Volume XXV, No. 2
May 2011
The Independent Medical Business Newspaper
Care connection Nine organizations share electronic medical records By Bryan Rolph, MD
A
By U.S. Sen. Al Franken
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very week, Minnesotans affected by devastating diseases visit my Senate offices. While their circumstances vary, they’re often heartbreaking. Sometimes treatments aren’t working, or the best treatment available is unaffordable. Some of the most difficult stories I hear are from Minne-
FIGHTING to page 10
PAID
How we can progress in finding and expanding treatment options
PRSRT STD U.S. POSTAGE
rare diseases
sotans fighting diseases that are so rare that viable treatment options are not available. These visits with the child with neurofibromatosis or the husband with pulmonary fibrosis often aren’t about how to get treatment for the family members themselves. Frankly, it’s usually too late for them. Instead, families are asking for research dollars to help those who will be diagnosed in the future. This selflessness is inspiring and sobering: inspiring because these are Minnesotans taking the time to be spokespeople and advocates for a greater good; but sobering to look them in the eye and know there’s no treatment or device
Detriot Lakes, MN Permit No. 2655
Fighting
s many Minnesota physicians know, the electronic medical record (EMR) is becoming an ever more ubiquitous part of medical practice. Numerous health systems across the state either have implemented or are in the process of implementing an EMR. In 2010, according to the Minnesota Department of Health (MDH): • 67 percent of clinics in Minnesota reported they were using an EMR and another 9 percent reported they were in the process of implementing one [MDH, Office of Health Information Technology (OHIT), 2010 MN HIT Ambulatory Care Clinic Survey (2010)]. • 23 percent of acute-care hospitals reported they were already using a “basic” or “comprehensive” EMR system, and another 47 percent reported that they would be planning or implementing a “basic” EMR system within the next year. [MDH, OHIT, 2009 AHA Annual
CARE to page 12
IN THIS ISSUE: Rare diseases Page 20
You wouldn’t give a 2-year-old a drink, so why would you give one to an unborn child? As a physician, it’s your responsibility to let her know: the U.S. Surgeon General Advisory says no amount of alcohol is safe during pregnancy. Share 049: Zero Alcohol For Nine Months.
www.mofas.org
CONTENTS
MAY 2011 Volume XXV, No. 2
FEATURES Fighting rare diseases How we can progress in finding and expanding treatment options
1
MINNESOTA HEALTH CARE ROUNDTABLE
By U.S. Sen. Al Franken
Care connection Nine organizations share electronic medical records
1
T H I R T Y- S I X T H
SESSION
By Bryan Rolph, MD
How I got here Physicians’ stories of their divergent paths to medical specialties
DEPARTMENTS CAPSULES
4
MEDICUS
7
INTERVIEW
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13
PROFESSIONAL UPDATE: GERONTOLOGY Navigating the world of long-term care 28 By Robert L. Kane, MD
FEATURE The fulfillment of service
Carl Heltne, MD Essentia Health
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Accountable Care Organizations Accountable to Whom? Thursday, October 13, 2011 1:00 – 4:00 PM • Duluth Room Downtown Mpls. Hilton and Towers
SPECIAL FOCUS: RARE DISEASES Developing drugs to treat rare diseases
Huntington’s disease 20
24
By Martha Nance, MD
By James Cloyd, PharmD
Breaking ground in childhood cancer research
The patient-family perspective
26
By Theresa Zimanske
22
By Jack Priest, MD, and Yoav Messinger, MD
The Independent Medical Business Newspaper
www.mppub.com PUBLISHER Mike Starnes mstarnes@mppub.com EDITOR Donna Ahrens dahrens@mppub.com
Background and focus: Created as part of national health care reform, accountable care organizations (ACOs) are now part of every health care policy discussion. As defined by the 111th Congress, ACOs are organizations that include physicians, hospitals, and other health care organizations with the legal structure to receive and distribute payments to participating physicians and hospitals to provide care coordination, invest in infrastructure and redesign care processes, and reward high-quality and efficient services.
Exactly what this means is unclear, and a confusing array of levels and qualifications for ACOs has been proposed. With 2012 as a start date for Medicare reimbursement through ACOs, Congress is developing firm definitions at this time. Some say ACOs turn physicians into insurance companies; others say they are a way for physicians to take a leadership role in fixing a broken system. As health care organizations race to join, create, or redefine themselves as ACOs, they all face more questions than answers. Objectives: We will review the history, goals, and rationale behind the ACO model. We will review the latest federal guidelines defining what an ACO can be. We will discuss how the ACO will affect health insurance companies, employers, and the pharmaceutical industry. We will illustrate what must not be allowed to happen if the model is expected to succeed. We will examine who decides if ACOs are successful and how those decisions will be made. We will explore why so many people, representing very different perspectives on health care, are opposed to the idea and what can be done for it to achieve its best potential.
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MAY 2011 MINNESOTA PHYSICIAN
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CAPSULES
Alliance Updates Cancer Action Plan A new state action plan for cancer was unveiled at the Cancer Summit 2011, held March 24 in Bloomington. More than 250 participants, including health care professionals, community outreach workers, advocates, and survivors, attended the summit. The event was organized by the Minnesota Cancer Alliance, a coalition of more than 100 health organizations, community groups, and volunteers. In addition to providing up-to-date information about focus areas of Cancer Plan Minnesota 2011–2016, the meeting featured a panel discussion on how health care reform may affect cancer prevention and control in the state. Jane Korn, MD, MPH, director of the Comprehensive Cancer Control Program in the Minnesota Department of Health, reviewed the new cancer plan, describing it as “a framework for individual and collective action across a broad
spectrum of cancer control issues.� Korn noted that the Minnesota plan is aligned with national priorities of cancer prevention and detection. In addition, she said, Minnesota is one of 13 states to be funded by the Centers for Disease Control and Prevention to develop policy, systems, and environmental interventions for populationwide change. To maximize resources, Korn said, the state’s cancer plan for 2011–2016 will build on existing programs, support networking on specific topics (e.g., colorectal cancer, tobacco control, obesity), and integrate cancer initiatives with other public health programs aimed at chronic diseases.
Hospital Rankings Focus on Specialties US News and World Report, known for its annual ranking of best hospitals in the country, has introduced a new ranking system for hospitals serving metro areas. The new report uses the
magazine’s annual rankings of specialties at hospitals to determine rankings for metro area hospitals. Metro hospitals are ranked first by a hospital’s number of nationally ranked specialties and then by the number of other specialties in which it was among the top 25 percent nationally. US News and World Report notes that this methodology is most helpful in directing a patient toward the best care for his or her particular condition. “The No. 1 hospital in a metro area is not necessarily the best in town for all patients,� says Avery Comarow, senior writer for the magazine. “Other hospitals may outshine it in various specialties. We expect that savvy consumers will consider not merely a hospital’s overall rank in the metro area, but its expertise in the specialty relevant to their care. In the Twin Cities area, the magazine’s top-rated hospital is University of Minnesota Medical Center, Fairview. The rest of the top 10 are, in order: Abbott Northwestern Hospital,
Hennepin County Medical Center, United Hospital of St. Paul, Fairview Southdale Hospital, North Memorial Hospital, Regions Hospital, Unity Hospital, St. Joseph’s Hospital, and Fairview Ridges Hospital. The top-ranked children’s hospitals in the metro area are University of Minnesota Amplatz Children’s Hospital, Children’s Hospitals and Clinics of Minnesota, and Gillette Children’s Specialty Healthcare.
Health Plans, Dayton Agree to Cap Profits From Public Plans In an unprecedented move to respond to pressure from lawmakers, the state’s private health plans have agreed to cap profits they make in 2011 on the public health insurance programs they administer. The plans have been under a spotlight for making profits on public plans at a time of large state budget deficits, and both the Legislature and Gov.
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Mark Dayton have moved forward with measures to increase scrutiny on health plan finances. Dayton, using executive orders and the regulatory power of the state’s Department of Human Services (DHS), has taken the lead, negotiating directly with plans about returning some of the $3 billion they annually receive from the state to provide health insurance to low-income Minnesotans. After UCare’s announcement that it would return $30 million to the state, Dayton called on other plans to make similar moves. Following a report that showed insurance companies making a healthy 3.8 profit on public plans in 2010, the plans quickly announced an agreement with Dayton on capping profits in 2011. On April 5, Dayton announced he and DHS had come to an agreement with Blue Cross and Blue Shield of Minnesota, HealthPartners, Medica, and UCare to place a 1 percent cap on profits for state plan managed-care contracts in 2011. Any amount over 1 percent that the plans earn will be returned to the state’s Health Care Access Fund, officials say. State officials say that after 2011, other recently announced measures will help ensure that public plan financials are better regulated. In March, DHS put in place a new competitive bidding process for health plans, along with other new regulations such as regular audits by the Commerce Department. The move to cap profits came just days after the Minnesota Council of Health Plans (MCHP) released its annual financial report. Those data show that health plans in the state had an overall operating margin in 2010 of 1.5 percent. For public programs, the operating margin was 3.84 percent. MCHP notes that the 10year average operating margin for public plans is 1.77 percent of revenue. MCHP officials say they are committed to working with the state to reduce costs and
improve quality in the public plans they administer. “The state is really working to revamp and modernize how it purchases health care for Medicaid and MinnesotaCare,� says Eileen Smith, director of communications for MCHP. “They’re really trying to come up with better ways to purchase coverage.�
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IOM Report Sees Gap in Research on LGBT Patient Needs A new report from the Institute of Medicine calls for medical researchers to be more proactive in including lesbian, gay, bisexual, and transgender people in health research. The IOM report says researchers currently face a gap in understanding the health status and needs of the LGBT population, and that researchers often treat sexual and gender minorities as a single homogeneous group. “Based on a thorough review of the science, this report recommends a research agenda to better understand the characteristics of the LGBT population, assess their unique health needs, and to identify the factors that either compromise or promote their health and well-being,� said Walter Bockting, PhD, IOM committee member and associate professor at the Program in Human Sexuality in the Department of Family Medicine and Community Health at the University of Minnesota Medical School. “The report recognizes that the LGBT population is diverse in terms of gender, age, race, and ethnicity, and calls for intervention research that addresses the needs of those with documented health inequities.�
Health Groups Join To Promote ACA Insurance Reforms A new group has been formed in Minnesota to advocate for preserving the health care reforms enacted by the
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CAPSULES to page 6 MAY 2011
MINNESOTA PHYSICIAN
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CAPSULES
Capsules from page 5 Affordable Care Act (ACA). The Minnesota Patient Advocacy Coalition is a coalition of health care groups that support specific reforms that the ACA put into law, such as prohibiting insurance companies from dropping people because of pre-existing conditions, ending annual limits or lifetime restrictions on coverage, and guaranteeing coverage for preventive care. The coalition consists of 16 groups, including AARP, the American Cancer Society Cancer Action Network, the American Heart Association, and the National MS Society Minnesota Chapter. Matt Schafer, spokesman for the coalition, says the group seeks to be a voice for patients at a time when health care reform remains controversial. “There are coalitions for providers and for health insurance companies, but I don’t know that there is a advocacy coalition that focuses exclusively on the patient,” Schafer says. The member groups share a belief that the ACA is good for
the patients and families they represent, and they felt they needed to stand up and say so, he adds. “We have gone far too long in not telling our side of the story and we collectively made a decision amongst our organizations that it was time to do that,” Schafer says. “The media portray the reforms as too complicated. To us, we looked through the health insurance reforms, and said, ‘No, these are pretty simple, and we want them to remain in law.’”
Lakeview System, HealthPartners Agree On Terms of Merger Lakeview Health System and HealthPartners have agreed to a merger plan in which Lakeview, based in Stillwater, will become part of the HealthPartners system. Officials say the move will provide a wider range of services and resources to the St. Croix Valley region. Bloomington-based HealthPartners has
clinics throughout the East Metro area, as well as two hospitals in western Wisconsin. “The evolving needs of the people of the St. Croix Valley remain our focus in creating this affiliation,” said Jeff Robertson, CEO of Lakeview Health. “HealthPartners’ highperforming care system and patient-centered mission are well-aligned with ours. We see long-term benefits for our patients as well as our broader community.” Under the agreement, first announced last December, Lakeview Health will maintain its own board. The system’s two divisions—Stillwater Medical Group and the Lakeview Foundation—will continue to operate under the Lakeview Health brand, officials say.
STD Rates Increase In Minnesota in 2010 Officials with the Minnesota Department of Health (MDH) say the number of cases of sexually transmitted diseases (STDs) hit a new high in the
state of 17,760 in 2010. MDH tracks STDs such as chlamydia, gonorrhea, and syphilis. There were 16,912 STD cases reported in 2009. “Chlamydia reached a record level of 15,294 cases this past year,” says Peter Carr, manager of the STD and HIV Section at MDH. “Not only does this total represent a 6 percent increase from the previous year, it’s the highest number of cases ever recorded in Minnesota in a single year since we began tracking chlamydia back in 1986.” MDH officials are calling for increased screening for STDs and the department is launching awareness campaigns on chlamydia and syphilis. The agency also is promoting its Partner Services Program to provide follow-up services to patients, including strategies for providing screening services to partners. “Overall, the report shows that we need to give STDs our full attention in order to reverse some of these trends,” says Carr.
Upcoming CME Courses www.cmecourses.umn.edu Office of Continuing Medical Education U 612-626-7600 or 1-800-776-8636 U email: cme@umn.edu
2011 CME SPRING COURSES 12th Annual Lillehei Symposium: Cardiovascular Care for Primary Care Practitioners April 18 – 19, 2011 “Bridging the Transition to Life after Cancer Treatment” Cancer Survivorship Conference April 29 – 30, 2011 North Central Chapter Infectious Disease Society of America (NCC-IDSA) Annual Meeting April 30, 2011 Bariatric Education Day May 25 – 26, 2011 Workshops in Clinical Hypnosis “Introductory and Advanced Sections” June 2 – 4, 2011 Topics and Advances in Pediatrics June 9 – 10, 2011 Advances in Breast, Endocrine, and Cancer Surgery June 16 – 18, 2011
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MINNESOTA PHYSICIAN
MAY 2011
2011 AHRQ National PBRN Research Conference June 22 – 24, 2011 Global Health Training August 1 – 26, 2011
UPCOMING FALL 2011 COURSES Psychiatry Review September, 2011 Pediatric Clinical Hypnosis September 15 – 17, 2011 Pediatric Trauma Summit September 22 – 23, 2011 Obstetrics, Gynecology, & Women’s Health Autumn Seminar September 23, 2011 Pain Management for Primary Care September 28, 2011 Practical Dermatology September 30 – October 1, 2011 Twin Cities Sports Medicine September 30 – October 1, 2011
Urology for Primary Care October 6, 2011 Transplant Immunosuppression “The Difficult Issues” October 12 – 15, 2011 Internal Medicine Review and Update November 2 – 4, 2011 Emerging Infections November 18, 2011
ON-LINE COURSES Courses available for AMA PRA category 1 credit. http://www.cme.umn.edu/online s Reducing Recurrent Preterm Birth s Travel Medicine s Healthcare for Immigrant & Refugee Populations s ECG of the Week s Adult Congenital Heart Disease All courses are held in the Twin Cities unless noted
MEDICUS
James Donovan, MD, a family practice physician at Miller Creek Medical Clinic, a St. Luke’s (Duluth) clinic, has been named a diplomate of the American Board of Bariatric Medicine. He received his medical degree from the University of Minnesota, attending both Duluth and Minneapolis campuses, and completed his residency at the University of Minnesota Rural Family Medicine program in Waseca and Mankato. James Donovan, MD Donovan joined Miller Creek Medical Clinic in 2004. Before that, he was an urgent care physician at St. Luke’s. John Chang, DO, recently joined St. Luke’s Internal Medicine Associates. Chang is a nocturnist with St. Luke’s Hospital and is board-certified in internal medicine. He received his medical degree from the University of North Texas Health Science Center in Fort Worth. He completed his residency in internal medicine and served as chief resident at United Health Services Wilson Medical Center in Johnson City, N.Y. Prior to joining St. Luke’s, Chang was clinical assistant professor of medicine at the University of New England College of Osteopathic Medicine and director of the Samaritan Medical Center John Chang, DO Hospitalist Program. Patricia Fontaine Conboy, MD, MS, a primary care and maternal and child health expert, has joined the HealthPartners Research Foundation as a senior clinical research investigator. Her currently funded research includes the National Children’s Study and projects on the patientcentered medical home. Fontaine Conboy was president of the Minnesota Academy of Family Physicians from 2009 to 2010 and was recently appointed to the American Academy of Family Physicians Commission on Health of the Public and Science. Her 30-year full academic faculty career at the University of Minnesota included Patricia Fontaine broad research, teaching, and administrative Conboy, MD, MS responsibilities. Essentia Health has added several physicians to its staff. Cardiothoracic surgeon David Arzouman, MD, has joined Essentia’s Heart and Vascular Center. He earned his medical degree from Northwestern University’s School of Medicine in Chicago. Natalie Bachir, MD, has joined the gastroenterology department at Essentia Health– Duluth Clinic. Bachir, who is board-certified in internal medicine, received her medical degree from University College in Dublin, Ireland. Brenda Cary, MD, has joined the staff at Essentia Health–Virginia Clinic as a family medicine physician. Cary received her medical degree from the University of Minnesota in Minneapolis. She is board-certified in family medicine and has taught at the University of Minnesota Duluth’s Center for American Indian and Minority Health. Ramon Sotto, MD, has joined Essentia Health’s Duluth Clinic as a specialist in interventional pain in the pain management department. Sotto, who is board-certified in physical medicine and rehabilitation, received his medical degree from the University of the East Ramon Magsaysay Memorial Medical Center College of Medicine in Quezon City, Philippines. Steven Bauer, MD, has been promoted to medical director of the Human Development Center (HDC), in Duluth. HDC is a community mental health center that serves residents in four counties in northeastern Minnesota and one county in northwestern Wisconsin. Bauer graduated from the University of Minnesota Duluth Medical School and completed his internship, residency, and fellowship in general adult psychiatry, as well as child and adolescent psychiatry, at the Mayo Clinic. He joined the Human Development Center in 1995 and provides care at HDC’s Duluth, Two Harbors, and Grand Marais offices, as well as consulting at several other programs in the region.
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MINNESOTA PHYSICIAN
7
INTERVIEW
Essentia’s integrated delivery system extends access ■ Tell us about why Essentia Health was formed.
Carl Heltne, MD Essentia Health Carl Heltne, MD, is chief medical officer for Essentia Health, an integrated health system that includes 17 hospitals and 66 clinics in Minnesota, Wisconsin, North Dakota, and Idaho. He is also on the faculty of the Physician Leadership College at the University of St. Thomas. Previously, Heltne was president of the Duluth Clinic and executive vice president of SMDC Health System. He also held several leadership positions during 25 years as an interventional cardiologist at the Duluth Clinic. Heltne received his medical degree from Texas Tech University School of Medicine and is a fellow or member of several professional societies.
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thing in cardiology and vascular. We brought electrophysiology services to Fargo so patients do not need to travel out of that community for procedures. We are in the process of starting doctor-todoctor teleconsults. I think patients are recognizing who Essentia is, and I think they are beginning to understand the value of integrated care.
There are two things that drove us. One was to improve the quality of care and the value that we provide in this region. Essentia has undergone a transformation from being a holding company to now being an operating company. Although Essentia Health was formed in 2004, we really did a significant transformation here in ■ Do you see ongoing consolidation? the last year or year and one-half. We did that I think we are attractive to other organizations transformation to improve the quality of care and because of our integrated delivery system and to provide value. We also believe in integrated because we have an operating system that is built health care delivery. Without being one system, around a dyad leadership model. we did not think we could realize the promise that Physicians are engaged with an ownership in is embedded within integrated health care delivery the mission—responsibility for quality, service, systems. Those are the reasons we moved in this safety, and cost. We have been able to prove that direction. It has been an evolutionary path over that model is sustainable from a financial standthe last four years. point, provides good quality care, and has high Essentia Health was formed by bringing SMDC satisfaction numbers. and the Benedictine Health System (BHS) together. People see that integratAt that time BHS had signifed delivery model, the strong icant long-term care assets The economic realities dyad leadership model, the and hospitals in Brainerd, responsibility and accountaDetroit Lakes, and three out frankly help us move bility we ask and get from in Idaho. We then spun off our physicians, and that is in the direction that BHS and they formed their attractive to them. I see furown corporation. Their we need to be moving. ther consolidations throughfocus is on long-term care, out the Essentia footprint in although we continue to Minnesota and North Dakota. have a relationship with them. Their acute care institutions became part of Essentia. ■ What is a dyad leadership model? The next iteration is that we brought Innovis, What we mean by a physician leader/administrain Fargo, into the system. At the same time the tive dyad is a working pair, a physician and an system in Brainerd became an integrated system so administrator, characterized by a singular mission, Brainerd Medical Center and St. Joseph’s merged shared accountability, and equal stature but conto form Brainerd Lakes Health. Then we moved to trasting perspective, know-how, and tools. This has an operating company model so that we are one been part of our DNA for years. I am the chief integrated system now. medical officer, my dyad partner is the chief operSo in Duluth, it’s Essentia East. In Brainerd, ating officer for Essentia. That dyad relationship it’s Essentia Central. In Fargo, it’s Essentia West. exists throughout the entire organization. Innovis goes away, Brainerd Lakes goes away, SMDC goes away. It’s all Essentia. ■ Many smaller practices in your area are adamant about remaining independent. How do you see ■ How has the public responded to these Essentia working with these groups? changes? I think the patients’ one-to-one interaction with their physicians and with the practice has in a lot of ways remained very much as it was before. The second thing is that the public appears to be more and more familiar with our name and brand. They see us living out our promise: “Here With You.” We have been able to express that in a very tangible way. If you look at the activities in Brainerd over the last couple years, we now have an excellent cancer center there. Our patients now have access to clinical trials. Physicians have access and participate in tumor boards and care conferences on a regular basis. We have also enhanced the program in oncology in Fargo so that the patients now have access where they are—we are “here with them” with a greater depth of services. We have done the same
MINNESOTA PHYSICIAN MAY 2011
The majority of practices around the area here are part of Essentia or St. Luke’s. In North Dakota, there are maybe a few independent practices, but most are with the former MeritCare or Innovis. We provide services for them and work collaboratively. Over the years there have been various waves of consolidations, and it will be more and more difficult for practices to remain independent in the current environment. If they wish to remain so, we wish to collaborate and help them practice. If they wish to be part of a group—we always explore that very carefully. ■ How is Essentia responding to the development
of Accountable Care Organizations? We already are an accountable care organization. We have a coordinated network, we contract with
our payers as a system. We have the ability and do take risks. All those things are there and have been with us for a period of time. We have been into care management or disease management for years and years. We welcome what is occurring in the environment this way. We not only deliver the care for the patient, but are able, with the patient, to manage the care. What has been exciting for me is the leverage we get by bringing patients into the discussion of how the delivery model should be defined to serve them best. It has been a very beneficial experience. â– All providers in the state are being
allows us to interface with patients in the form of MyHealth, which is the patient portal into Essentia and allows us to bring some of our disease management to the patients’ homes. It allows us to use telemedicine in a very effective way, which you could not do without a common medical record. It allows us to understand our quality and our cost and outcome data in a better way. So although there was a capital expenditure, it is the right decision, we think, in an integrated system to have one common electronic medical record. ■How is the federal health care reform law
affecting Essentia?
required to move to electronic health records. How is that going at Essentia? It’s going great. In Duluth, we put in Epic about eight years ago. We started that on the ambulatory side. A lot of systems start that in the hospital environment. But if you look at where the action is, as far as volume, it’s on the outpatient side. We made a decision to have one electronic medical record all across Essentia. So Brainerd, which had Cerner, is now going live with Epic. Fargo, which had another variation of Cerner, is going live with Epic this summer. Because we have a common medical record, we need to have a common lab system across Essentia, which we are doing. It
With the health care reform law, a lot of people focus on the accountable care organizations. I think that brings focus to what we have been doing. We feel we have been an accountable care organization. The other reality here that impacts us as much or more than the health care reform law is the current status of our state and federal budgets. The reality is that we are being asked to do more and more—and I think appropriately so—with less and less revenue coming it. We have to be more resourceful and better stewards of our resources, and I think that is fine. We can do that, and in fact I do not see it as discouraging. That is an obligation that we, as physicians, need to fulfill. The economic
realities frankly help us move in the direction that we need to be moving. â– What do you see as the biggest chal-
lenges the future will bring to health care delivery at Essentia? I think it is the same as everybody else. It’s the reality of meeting the needs of those who are entrusted in our care in an era of decreasing resources. What gives me a lot of optimism is that we have great, engaged docs. We would not be who we are without our physicians, who take a real ownership position in the mission. There are a lot of ways of describing ownership and one way is in equity—our physicians do not have that equity ownership, but they have an ownership in our mission. With our docs and our administrative staff, with dedicated nurses, I see the challenges but they don’t seem daunting to me. Some of these things are a stimulus to help us all step back and look at things. That brings patients not only into the decisionmaking about their individual care, but into how we design and deliver care and allows them to have an active voice in that. It has demonstrated to us that we all need to work collaboratively to get this done. That patient- and family-centered focus for us has been a positive thing throughout Essentia.
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Fighting from cover that will save their lives in the time frame they need. Challenges to progress
After hearing these stories of families affected by rare diseases, I’ve become interested in how we conduct research and product development for these diseases—because we clearly aren’t doing enough. I sit on the Senate Health, Education, Labor and Pensions Committee, which oversees the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), so I have an opportunity to help. I quickly learned that there are some key challenges to progress on rare diseases. Definitions. Definitions create the scope of a problem and set parameters for problemsolving. But estimates of the number of different rare diseases range from 5,000 to 8,000, and part of this wide range is the variation in how rare diseases are defined. For example, the Orphan Drug Act (ODA)
generally targets diseases that affect 200,000 or fewer Americans per year. This contrasts with the Humanitarian Use Device definition for medical devices, which provides an expedited review process for devices intended to benefit patients suffering from ailments that affect fewer than 4,000 Americans each year. Both definitions serve important purposes, but it’s difficult to create a definition that doesn’t feel like a line in the sand. While we may need to continue to use different definitions for different purposes, we also must find a way to resolve the problem that these different definitions create. Clinical trials. When a disease such as Guillain-Barré syndrome occurs in fewer than 2 in 100,000 people, it’s nearly impossible to recruit sufficient numbers of research participants to make a viable study. There are some promising models that we can learn from,
though. For example, the Children’s Oncology Group (which includes Mayo Clinic and University of Minnesota researchers), has more than 150 concurrent studies with more than 40,000 patients recruited through 200 medical institutions in the U.S. and internationally. This group has brought about real improvement for kids with cancer and shows that collaborative research models can improve recruitment and yield results. (Please also see the article on page 22 about the International Pleuropulmonary
Blastoma Registry, headquartered at Children’s Hospitals and Clinics of Minnesota.) We need to fund more of this type of work. Health insurance. Another barrier to clinical trials has been health insurance, since many health plans historically haven’t covered routine care if a beneficiary is participating in a clinical trial. The good news is that this changed with the passage of the Affordable Care Act in March 2010. Under the health reform law, health plans must cover routine care, regard-
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Options for most families affected by rare diseases continue to be too little, too late. less of clinical trial participation. We also limit annual caps and eliminate lifetime caps. This makes a huge difference for a family with a child with hemophilia, who may reach his lifetime cap before the age of 6. Market incentives. Laws like the Orphan Drug Act have fostered enormous progress in the treatment of rare diseases. Since the act became law in 1983, more than 350 new treatments for rare diseases have been approved by the FDA because companies saw the benefit of a longer period of market exclusivity, even if the target population is small. We know these incentives work because in the decade prior to passage of the ODA, fewer than 10 rare disease drugs went on the market. But 350 drugs in 20 years aren’t enough. And since most rare diseases are actually pediatric conditions, Congress also enacted laws like the Best Pharmaceuticals for Children Act, the Pediatric Research Equity Act, and the Pediatric Medical Devices Safety Act to remove barriers and create market incentives for treatments specifically for kids. The Safe Medical Devices Act that created the Humanitarian Use Device category at FDA has enabled more than 50 devices to be approved under this category. While these laws have helped, the reality is that the options for most families affected by rare diseases continue to be too little, too late. Priorities for Congress
Although we’ve learned a lot since 1983 from both research and market perspectives, we must do more. That’s why I was pleased that the Institute of Medicine published a report on these issues last year: “Acceler-
ating Rare Diseases Research and Orphan Product Development.” The report includes some concrete recommendations for next steps that Congress must consider. And we have some real opportunities to do so in the near future. For example, in the Senate, we’ll soon be discussing the laws that govern FDA user fees for drugs and devices. This is an ideal time to consider opportunities to improve treatments for rare diseases. Some top priorities for Congress should be: A national strategy. We need a cohesive, national plan to promote rare disease research and treatment development. The plan should include milestones so we can track our progress moving forward. A comprehensive plan for rare diseases at the National Institutes of Health. NIH needs to develop a comprehensive action plan that includes all NIH institutes and looks at public-private partnerships to enable researchers to share resources like biorepositories and animal models. The current NIH Office of Rare Disease Research does good work, but we must encourage researchers to work more collaboratively on rare disease research across the entire NIH. Improved market incentives. My top priority as we begin discussions in Congress is how Minnesota’s medical device industry can play a bigger role in improving the lives of patients with rare diseases. I’m proud that companies like Medtronic and EV3 have been leaders in developing humanitarian use devices, and I’d like to see more of these devices developed by Minnesota companies. That’s why I’m working on legislation that revisits the incentive structure for devices for rare diseases so we make sure that we’re maximizing
development of innovative devices and ensuring patient safety. There’s bipartisan interest in this topic since it makes sense for our families and our industries. So while the stories of rare disease are sobering, we can be heartened by the fact that we have opportunities. With organizations like the University of Minnesota’s Center for Orphan Drug Research (see the article on page 20 and the Cancer Centers at Mayo and the U of M, Minnesota has a great foun-
dation to be a leader in this area. I look forward to working with Minnesota’s health care and research communities to make real progress for the families who are affected by these conditions. U.S. Sen. Al Franken (D–Minn.) is an original co-sponsor of Senate Bill 606, the Creating Hope Act, introduced in March 2011 by Sen. Robert Casey (D–Pa.). This bill intends to spur private-sector innovation aimed at treating rare and neglected pediatric diseases.
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Care Everywhere Network Comes to the Midwest
Care from cover Survey Information Technology Supplement (2010).] EMRs of all types promise many potential benefits, the most important of which is improved access to patient information. However, that easy and immediate access to information is generally limited to the data within a given health system’s EMR. Information from other institutions usually has to be obtained prior to a patient encounter via fax, or even the U.S. Postal Service. In some scenarios, the patients themselves arrive for the appointment with the information in hand. And finally, there are encounters in which a physician faces a complex patient from another medical system with either no or incomplete records. In those situations, we often obtain the patient’s records late in the encounter or after the encounter. Probably each of us, at some point, has thought, “If only I could see the patient’s records from another institution electronically … quickly, easily, and at the point of care. After all,
The Care Everywhere network initiative in the Midwest was launched through the Minnesota Epic Users Group (MNEUG), a collaborative effort involving nine health systems that serve patients in Minnesota, South Dakota, and North Dakota and use the Epic electronic medical records (EMR) system. The MNEUG has met biannually since 2008 to organize and pool ideas and resources in an effort to improve the EMR experience for all of its members. Use of Care Everywhere in the Midwest was started through a pilot program involving two organizations belonging to the MNEUG. In January 2009, Amy Porwoll of CentraCare Health System and Beth Myren of North Memorial Healthcare were instrumental in organizing a demonstration version of Care Everywhere between their respective organizations. This was the first use of Care Everywhere in the United States between two non-affiliated health organizations. Based on the success of that demonstration, seven other organizations joined the Care Everywhere network, thereby allowing all of the member organizations to share health information electronically. The organizations currently using the system are: • Hennepin County Medical Center • Allina Hospitals & Clinics • North Memorial HealthCare • CentraCare Health System • Sanford Health (Fargo, N.D., and • Essentia Health (Duluth) Sioux Falls, S.D.) • Fairview Health Services • SMDC (Duluth) • HealthPartners Clinics and Regions Hospital Grand Forks, N.D.-based Altru Health System, serving northeast North Dakota and northwest Minnesota, and Park Nicollet Health Services are expected to join the EMR network within the year.
isn’t that what EMRs are supposed to do?” The answer is yes, and this goal has become a reality for nine of Minnesota’s health care organizations, using the Care
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Everywhere software and network developed by their shared EMR software vendor, Epic. One system’s experience with shared EMRs
CentraCare Health System, in St. Cloud, Minn., has used the Epic application, produced by health IT company Epic Systems Corporation, since 2006. The organization’s three hospitals, four long-term care facilities, and 12 clinics are all connected through the Epic EMR. Now, CentraCare’s medical staff can connect with eight other health care organizations serving patients in Minnesota, North Dakota, and South Dakota through Epic’s Care Everywhere feature. The feature provides secure access to another medical organization’s Epic records at the point of care. [The sidebar lists the organizations participating in Care Everywhere.] After consent is obtained from the patient, authorized CentraCare providers can view the patient’s medical records from one of the other medical systems—quickly and with little effort. The feature bypasses the need to contact the other organization and await faxed documents, and it allows the provider to see those records right at the point of care.
The information is displayed in Care Everywhere in a standardized format that includes a summary page listing the patient’s most recent encounters, allergies, medications, medical problems, immunizations, and medical history. Other sections include documents (visit notes, H & Ps and consultations, lab results, imaging and pathology results, etc.). Care Everywhere is commonly used in the following situations: 1. A patient is typically seen at one organization but requires emergency medical treatment at another facility. 2. A patient is referred from one organization to another. 3. A patient lives in one state during the summer and another during the winter, receiving care during stays at each location. 4. A patient regularly visits multiple organizations for care. One of our first uses of Care Everywhere involved a patient with cardiac disease who was passing through the St. Cloud area. Experiencing chest discomfort, this patient was evaluated in the emergency department at St. Cloud Hospital. Care Everywhere allowed prompt comparison of the patient’s ECG with an ECG done the previous week at North Memorial. At St. Cloud Hospital, we frequently take care of patients from the Princeton and Milaca areas who receive their health care in the Fairview system. Care Everywhere gives us the ability to quickly view Fairview records at the time of admission. At this time, the Care Everywhere feature allows direct electronic exchange of medical records among 325 organizations nationwide, in addition to the nine health care organizations in the Midwest. Presumably, the number of Epic users participating will continue to grow nationwide, helping to facilitate the flow of patient information among organizations. Bryan Rolph, MD, is an internist, nephrologist, and EMR physician champion who practices at CentraCare Clinic in St. Cloud, Minn.
HOW
A life in medicine, mellowed by music Fiddling physician balances work, play By Michael A. Hildebrandt, MD
I
GOT
HERE
Our second “How I Got Here” feature tells the stories behind a dozen physicians’ choices to pursue a career in medicine and to specialize in a particular field. Following the opening article by a musician-physician are the responses of 11 physicians to three questions: • How/why did you choose your
I love practicing medical specialty? medicine. Counting • What have been the rewards and residency, I’ve done challenges of your specialty as it for over 30 years. you've practiced over the years? But I’ve been practicing something else • What lies ahead in your specialfor even longer —the ty in the coming decade? violin. These two pasSome physicians knew from childsions and disciplines hood what kind of medicine they have intersected through the years wanted to practice; others were in ways I could have Photo credit: Katie Brien Photography surprised to find themselves never imagined. drawn to a specialty they had I grew up in Mendota Heights, a suburb never considered prior to their medof St. Paul, the oldest of six kids. I started ical residency; and still others added, music lessons through our school program changed, or combined specialties in third grade. Why the violin? Well, my mother had after years of medical practice. played her father’s violin in high school, We thank all of those who participatand she kept that old fiddle in a case under ed in this feature. the bed. I’m told that, even from a very young age, I was always asking to play with “the box”—my words for her violin where I ended up? case. She would hold the violin while I The music continued in residency. We sawed away with the bow. It must have residents would go Christmas caroling on been in the genes. the wards and to various faculty members’ My parents were committed to our homes. In the Bethesda ER, I met a fine musical education. All six of us took piano singer and guitarist, Dr. Bruce Neumann, lessons, and then moved on to various other and we began performing a little. I also instruments of choice. In addition to the met another partner at Bethesda —my wife violin, I also now play some piano, guitar, Paula, an RN and pianist. Bruce and I mandolin, banjo, viola, and, once in a decided we needed a bass player and a while, the musical saw. third singer, so we recruited her, trained I suspect that music may be what got her in, and the three of us played for several my medical career started. When applying years as a trio called—what else?—“Good for medical school, everybody has decent Medicine.” I was also fortunate to meet and grades, academic credentials, and MCAT play with a number of musicians in the scores. What makes a person stand out? In vibrant folk music community on the my case, I had given violin lessons, played in University of Minnesota’s West Bank. the University of Minnesota Orchestra, and Everything reached a peak in the sumperformed a senior solo violin recital. My mer of 1982. I finished my residency and, at application interview was with the wellthe same time, a group of us were invited to known Dr. Albert Sullivan. He turned out to play at the prestigious Winnipeg Folk be a great music lover, and to my great Festival—a yearly event featuring performrelief, we ended up talking quite a bit about ers from around the world. We called ourmusic. I think it helped! selves the ’49 Pickup Band since the music During med school, I took up fiddling we were playing was older country and we and began playing with a bluegrass band on had formed just for that event. Great fun, weekends, which helped pay some tuition. and it remains a highlight of my life. Many And during medical school rotations, I of the performers there have gone on to became acquainted with Dr. Don Asp, who become well known in the folk music and at that time was head of the University of entertainment business. I enjoy having Minnesota Family Practice Residency known them “back when.” Program at Bethesda Lutheran Hospital in After Winnipeg, I was at the proverbial St. Paul. Don has a tremendous bass singing fork in the road, career-wise. Music or medivoice and loves all kinds of music. Guess cine? But I never really thought of music as
a “job.” Maybe it was just too much fun! My life’s dream was always to be a physician. And so, with excitement but also with just a twinge of regret for what might have been, I began my career as a family practice physician in Faribault, a southeastern Minnesota town of about 20,000 people. Not so scary after all
An encounter early in my practice reinforced my decision to continue to pursue my love of music. After joining a church in Faribault, my wife and I played for services there one Sunday. Back at the office the next day, I saw that I was scheduled to see a young girl, Jenny (all names in this article are pseudonyms), for a recheck. I winced, remembering our first meeting the previous week. Due to some congenital problems, Jenny had required several painful surgeries at a young age. As a result, she was deeply fearful of all things medical. Our previous encounter, though only for a sore throat, featured loud screaming and thrashing about on Jenny’s part, and high levels of stress all around. I took a deep breath and entered the room to find ... a smiling, cooperative child—and a very relieved mom. Our visit was pleasant and uneventful. At the end, I asked Jenny’s mother what had happened to effect such a drastic change. “We were in church last Sunday when you played the violin,” she said. “Jenny recognized you and leaned over and whispered, ‘Mom, look— he plays the violin, just like Grandpa.’ ” This simple, non-medical connection transformed this child’s view of our medical encounter. For me, it underscored and validated the importance of maintaining a life outside medicine. In the 29 years since that memorable encounter, my life as a musician has continued to enhance my relationships with my patients and to keep me refreshed. A variety benefit show I’ve been part of has raised thousands of dollars for various Rice County charities. I’ve enjoyed playing in summer concerts in the park, annual Christmas carol sing-alongs, and school presentations, as well as the occasional opportunity to advocate for an ongoing balance between the arts and sciences in our public schools. I’ve had the good fortune to play with some nationally known artists touring through the area, have produced two CDs of my own, and have taken part in other people’s recording projects. And, as an intermittent player with one of the original bluegrass bands in Minnesota, the Platte Valley Boys, I was inducted into the Mid-America Music Hall of Fame in 2007. Mary
Artistic people, and musicians in particular, are unique individuals and very interesting to get to know. Because of the musical conMAY 2011
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nection, a number of musicians have gravitated to my medical practice over the years. Mary, now in her 80s and retired, is beloved in the community as a teacher for 40 years. An excellent piano player, she volunteers her time and talents five or six days each week playing for nursing homes, seniors’ events, and anything else anyone asks for. Though you would never know it to hear her play, she has developed some arthritis in her hands. We work to control these symptoms and keep her doing what she loves. Bongo
I saw Bongo, my favorite percussionist, play at Orchestra Hall in Minneapolis with a nationally known jazz group. Not long after, he came in with a large rotator cuff tear. He needed to be fixed fast to keep his career on track. We got it done, and he’s back thumping the skins as good as ever. Teddy
One of my more interesting patients is Teddy, a tattooed, multiply pierced teenager who is deeply committed to punk/heavy metal music, something I don’t understand at all. But he knew I was also a musician, so he came in for a couple of pressing concerns. As we talked, it became apparent that
Christine Athmann, MD Family medicine and obstetrics, Central Lakes Medical Clinic and Cuyuna Regional Medical Center, Crosby Years in practice: 1 How/why did you choose your specialty? Growing up as a patient of the Indian Health Service in a small clinic in White Earth, Minn., primary care was the dominant presence. Referrals to outside specialists were reserved for those with greatest need, and limited funding made efficient use of resources a must. As patients, we felt the pull between patient-centered care and health care on a budget. At age 17, the Center of American Indian and Minority Health (CAIMH) at the University of Minnesota Medical School provided me a preceptorship opportunity with these IMH doctors. I connected with their passion, dedication, and hard work. I came from an area that produced few physicians, so it was more than luck, hard work, and bootstrap-pulling that placed the initials MD behind my name. The CAIMH recognized a physician in me before I could even fathom the idea. The CAIMH provided guidance, encouragement, and mentorship during undergraduate education, the admissions process, and, later, in my training and practice. The CAIMH continues to be a constant presence and serves as a reminder that
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MINNESOTA PHYSICIAN MAY 2011
he was a very intelligent, well-spoken, and thoughtful young man. I was able to give him some helpful medical direction over several visits. Later, he told me that without the musical connection he likely would not have visited a physician. I went to hear his band play in the park. I still don’t understand the music, but we’re a lot closer to understanding—and respecting—each other. Melody
And then there was Melody. I looked after her and her family for many years. She had boundless energy and enthusiasm and was instrumental in starting the Tree Frog Music Festival in Faribault that continued for 15 years before shutting down this year. She sang beautifully and I was privileged to perform with her many times. Three summers ago she died, still young, from the ravages of cancer. At that year’s festival, our band played several of her favorite songs in tribute to her. As we played, an eagle appeared, circled over the concert area, then flew off as the songs ended. We might have set a record that day for goose bumps and tears. A life in medicine and music
remain close. I continue to play in a band with members of Melody’s family, and with my buddy Bongo. My practice, my personal well-being, and, I believe, my patients’ wellbeing have been deeply enriched by my musical pursuits. I believe my music has also been deepened and enriched by my clinical experiences and the many joys and sorrows I’ve shared with my patients over the years. Perhaps the most gratifying part of this is when parents or teachers tell me that one of their children or students has started playing an instrument or has chosen to continue a musical or artistic pursuit because they have seen this as a priority in my life. Looking back, I am grateful to have had the opportunity to pursue these two passions throughout my life, and hope to continue both as long as possible. After all, who knows what might be around the next bend in the road? Michael A. Hildebrandt, MD, is a family practice physician at the Allina Medical Clinic in Faribault, and a member of the “Over and Back Band” and “Jivin’ Ivan and the Kings of Swing.” In 2007 he was inducted into the Mid-America Music Hall of Fame.
After 29 years, Jenny’s family and ours
who I am and where I come from allow me to bring a unique approach and outlook to my practice. With a focus on rural primary care and Native health care, the U of M School of Medicine in Duluth was a phenomenal place to train. The opportunities to work with rural Native American family doctors exemplified how broad the family medicine specialty is and reaffirmed the importance of training more Native doctors. From burr-drilling eyes and managing rupturing aortic aneurysms in Dutch Harbor, Alaska, to chronic disease management on my local reservation, the world of family medicine was vast and exciting, reaching all walks of life. After finishing my residency at St. John’s Hospital in St. Paul, I found that, for me, full-spectrum family medicine, including obstetrics, was the only way to practice. This past August I started my first position, with Central Lakes Medical Clinic in Crosby, and I love the daily challenges. Rewards/challenges: As the most versatile specialty, family medicine is never boring! Daily activities can fluctuate from stabilizing a neonate, to splinting a fracture, to making a nursing home visit. My routine responsibilities encompass a wide variety of human experience, so I am constantly learning from
my patients and colleagues. Not a day goes by that I don’t grow and become a better doctor and person. Versatility is also the most challenging aspect. Keeping up with ever-changing data and literature can be daunting. Knowing my limits and effectively and efficiently utilizing my colleagues and patient care team are key to superior patient care. What lies ahead? It’s an exciting time for family medicine as primary care takes center stage on a national level. Data continue to show that primary care-oriented medicine reduces cost and improves outcomes. With reimbursement heavily procedure-based, family medicine doctors struggle to balance production expectations with time needed to provide patient-centered care that covers preventive medicine and chronic disease management. The structure of the office visit will likely be reexamined as we look into group visits and establish medical homes. Recruitment and fair reimbursement are key as we face a primary care doctor shortage and an aging population. Because Minnesota already leads the nation in training family physicians and is at the forefront of social justice, I am confident this state and its physicians will find creative solutions to these challenges.
Maggie O’Connor, MD Palliative care, Abbott Northwestern Hospital, Minneapolis Years in practice: 30 How/why did you choose your specialty? The bluffs along the Minnesota River abut the edge of the Great Plains, giving a bicyclist the challenge of a rugged, hilly ride and the gift of horizons where one can feel small in the immensity. The year I turned 50, I decided to ride 5,000 miles looping out and back through this landscape. A midlife crisis. Medicine had already led me on a path that had meandered. Eight years of primary care. Then twin boys, and the first waves of managed care, led me to become director of a student health service in Mankato. The labyrinthine bicycle ride began 15 years later. I thought I would leave medicine, and considered everything from chaplain to gardener. But I didn’t want to start over in school, and I liked working with people. “Can you practice ethics without being an academic?” I asked Dr. Steve Miles in his office at the University of Minnesota’s Center for Bioethics. He paused a few seconds before answering, “No. A philosopher can’t bill.” Then he asked if I had ever heard of pall-
Robert Hoch, MD Pulmonary/critical care/sleep medicine, HealthPartners, Twin Cities Years in practice: 16 How/why did you choose your specialty? My interest in medicine had its foundation in undergraduate liberal arts distribution requirements. As an English major, I initially didn’t plan on going to medical school. But after taking some required science courses, I found myself eating far more chips from that bag than I’d ever intended. I finished my undergraduate education having taken more science than English courses. I was accepted and ready to start at the University of Minnesota Law School, but decided to defer a year after talking with my lawyer brother, who suggested that I might not enjoy practicing law as much as I thought. After deciding the world might survive without one more attorney, I ended up on the university’s East Bank (med school) rather than on the West Bank (law school). Pulmonary and critical care medicine seemed like a good fit for my interests in medical school, since I enjoy the challenge
iative care. I shook my head absently, as my thoughts wandered down a path of disappointment. Two weeks later I ran into Dr. Mark Leenay (then medical director of Palliative Care and Hospice at Fairview Health Services) and realized he was doing palliative care. I peppered him with questions. By the end of our talk, I had found my dream job. “What should I do if I wanted to get into palliative care?” I asked. “Well, I’d go to the AAHPM [American Academy of Hospice and Palliative Medicine] conference …,” he began. “No. I really need to retool,” I said. “Then do a fellowship at San Diego Hospice,” he said. During that fellowship I felt like a sweater that was turned inside out. Instead of treating diseases, we focused on the goals of patients and families, or coming to grips with goals that were out of reach. (Nauseated for three months? No problem, we can handle that. Live until your pre-teen son gets married? Hmm, we need to talk.) When I returned to my hometown in Minnesota, eager to start a palliative care
practice, friends shared stories of nightmare deaths and suffering. When I pitched my practice to physicians, they said, “Palliative care? Oh, I do all that for my patients.” The practice failed. Now I work in a tertiary care hospital where science pushes against the current of life and dying. I miss the bluffs and plains that I loved to ride, but I ride a similar terrain each day: challenging work and feeling small in the immensity of mystery. Doctors still tell me, “I already do palliative care.” But now those same doctors add, “… but I need help with this patient.” What lies ahead? In the next 10 years, palliative care will be recognized as a critical piece in the health care puzzle. Studies show that people feel better and live longer with good palliative care, with less aggressive (i.e., expensive and often futile) care at the end of life. What does palliative care do to make that happen? It focuses on thorough management of symptoms. It helps patients understand the facts and meaning of their illness, and their prognosis. In doing so, they are able to clarify their goals as the illness evolves.
of applying knowledge of basic science and physiology to diseases both mild and severe. I’ve always been interested in knowing how things work normally and why they break down. A rapidly evolving body of knowledge has enabled us to have a much better grasp of the cellular and molecular events that orchestrate homeostasis and disease. I have been fortunate to engage in sophisticated basic science research on sepsis, inflammation, and acute lung injury at the molecular level, and even to pursue my interests in design of novel medical-device technology. Sleep medicine has become a much larger portion of my practice in the last 10 years. Rewards/challenges: My rewards have been too numerous to count. Helping patients get better has been the greatest reward. Sometimes that can take the form of something seemingly simple, like getting the right therapy to resolve a chronic cough. Other times, it can consist of transforming a patient’s life by diagnosing and treating his severe sleep apnea or narcolepsy. And other times, a reward can come from using
every ounce of knowledge to dramatically save a life, as occurred several years ago in the care of a woman with arrest after amniotic fluid embolism. Certainly, the challenges are many: Inability to fix all problems, a generally older and more frail population, and falling reimbursements, to name a few, put pressure on all involved. What lies ahead? Novel therapies continue to appear and exciting things are on the horizon, such as customized “organ farming” to grow replacement organs using one’s own cells in vitro on an organ matrix. Sleep research is rapidly evolving and holds promise for better and more sophisticated management of sleep/wake states for treatment of conditions such as insomnia and narcolepsy/hypersomnia. On the general level, a tsunami of aging baby boomers will fill our ICUs beyond capacity, and what constitutes reasonable versus futile care will be debated more in light of skyrocketing health care costs.
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Elizabeth Klodas, MD Cardiologist, Preventive Cardiology Consultants, Edina Years in practice: 15 How/why did you choose your specialty? I grew up in Toronto, where my father is a primary care physician, and it was always assumed that I would go to medical school and eventually take over his practice. My becoming a cardiologist in Minnesota was never part of the plan. In fact, even by the time I finished my internship, I really didn’t know how to read an electrocardiogram. The first month of my internal medicine fellowship at Mayo put me on this path. The rotation was cardiology, and the attending was Pierce Vatterott (currently a practicing electrophysiologist in St. Paul). Sometimes you cross paths with individuals who are passionate or knowledgeable or encouraging or inspiring. Pierce was (and still is) all of those. He could make the most mundane problem fascinating, the most challenging one approachable—and he sure taught me how to read those EKGs. That rotation helped me to see medicine as the amazing combination of science and humanity that makes it a calling, and it instilled in me an awe for the miracle that is the human heart. Rewards/challenges: I have had the privilege to train and practice during the golden age of cardiology. I was part of the first genera-
Steve Grandt, MD Psychiatrist, Brainerd Lakes Health, Brainerd Years in practice: 1 How/why did you choose your specialty? I had no interest in psychiatry when I started my rotation at Regions Hospital, in St. Paul, during medical school. However, I was amazed by my interaction with two patients in particular. One was a devastatingly depressed man who had nearly continuous suicidal ideation. He was given electroconvulsive therapy (ECT), and after only a couple of treatments he experienced a profound turnaround and began to see hope in his life. The second patient was a man with disorganized schizophrenia whom I admitted one afternoon while he was acutely psychotic. His answers to each of my questions were bizarre and unrelated; he was unable to even tell me his name. We started him on an antipsychotic, and when I returned the next morning, I was stunned to discover that he was able to have a coherent conversation. I had no idea how intelligent and insightful he actually was. On previous rotations, I had seen how
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tion of cardiologists to be trained to perform TEE (transesophageal echocardiography), cardiac MRI, and cardiac CT. I’ve witnessed the implementation of stents and implantable defibrillators. We’ve seen amazing improvements in the treatment of myocardial infarction, seismic changes in imaging, marked advancements in arrhythmia care and sudden death prevention, and even a revolution in cholesterol management. Caring for patients within such an environment has been immensely rewarding. The challenge is that we appear to be butting up against a plateau of efficacy. At the big national meetings now, it’s not unusual to learn that a new drug has no clear benefit over the standard of care, or that a new procedure fails to improve outcomes. I believe we are starting to see the limits of what technology and pharmacology can accomplish. In addition, the costs of cardiovascular care are unsustainable and we need to look at solutions beyond expensive tests and treatments. What lies ahead? Cardiologists will have tremendous job security—the aging baby boomer generation should keep our waiting rooms filled. But more and more of these patients will be complex and resource-
intense, straining the limited cardiologist workforce—so management of “routine” cardiac patients will fall on the shoulders of primary care. Without significant changes, continued pressures to cut costs and reduce utilization will be accompanied by reductions in reimbursement, forcing most cardiologists to abandon private practice and become health system employees. This has already happened in Minnesota. We will need to rethink management algorithms to maximize outcomes while reining in costs. I believe in the next 10 years we will put as much effort into discerning how to best prevent cardiovascular disease as into finding new ways to treat it. Cardiovascular disease, to a great extent, is a lifestyle disease, and cardiologists will need to take leadership in optimizing cardiovascular health, focusing on actionable advice and attainable goals. I also see high-quality, possibly prescriptive, nutrition as taking center stage. I predict the emergence of a more engaged patient who is actively involved in self-monitoring and care. Perhaps we’ll see the promise of individualized therapies materialize, but I anticipate the next “big thing” will be optimization of the fundamentals—not just because it’s time, but because it’s a necessity.
well many patients were able to cope with significant illness and pain; but in mental illness, the disease attacks the very organ system that gives people that ability. I quickly realized that, as a psychiatrist, I would be able to very profoundly impact the lives of people who suffered quite significantly. Rewards/challenges: My main interest within psychiatry is treatment-resistant depression. I find intense fulfillment when I am able to work with patients who have been depressed for many years and develop a treatment plan that enables them to feel like themselves again. Many folks become discouraged quickly after several failed medication trials, but I love motivating and encouraging people to persevere and try new combinations, ECT, or other strategies to treat their depression. Far and away my biggest frustration with psychiatry (and medicine in general) is the amount of time that my staff and I have to spend in often unsuccessful attempts to have medications covered by insurance companies. While there are some
very good, inexpensive antidepressants, all psychiatric drugs are not created equal. I feel that all patients, regardless of financial resources, should have equal access to the medications that have fewer side effects or carry less long-term risk. What lies ahead? The next 10 years are going to be an exciting time in the field of psychiatry. Recent refinements in ECT techniques have very significantly decreased its cognitive side effects, and I think its use will increase dramatically. There has been some promising research into finding genetic markers that may eventually help us to better select antidepressants for each individual patient. Transcranial magnetic stimulation appears to be growing into another tool we can use to treat resistant depression. The University of Minnesota is also developing a fantastic program involving early intervention for people experiencing the initial symptoms of psychosis. I hope that this program will enable the greatest amount of functionality in those with what is often a chronic, debilitating disease.
Noel Laudi, MD, MRCP (UK) Hematologist/oncologist, Minnesota Oncology Hematology PA, Coon Rapids; Mercy Hospital, Coon Rapids Years in practice: 19 How/why did you choose your specialty? I grew up in Malta, a little island in the Mediterranean, located 60 miles south of Sicily. I am not sure what prompted me to go into medicine, but being in a position to help people had something to do with it. I graduated from the University of Malta in 1992. As a fourth-year medical student, I was able to cross the Atlantic and spend a month’s clerkship in hematology at the University of Minnesota. There, Harry Jacob and Bob Howe certainly had a big impact on me. In addition, spending time on the bone marrow transplant floor, attending grand rounds, and rounding with residents were things that I had not done before. After this experience, I knew that this is what I wanted to do and where to do it. I came back to the University of Minnesota to pursue an internal medicine residency. By the time I completed my residency, my wife and I had two children and we started becoming more accustomed to
Holly Boyer, MD Otolaryngologist, University of Minnesota Medical School, Department of Otolaryngology; and Stillwater Medical Group Years in practice: 12 How/why did you choose your specialty? Third-year medical school: As I watch the resident make the postauricular incision, which starts at the top of the ear, arches behind the ear, and ends basically at the ear lobe, I say to myself: “This resident is in trouble, there is no way this ear is going to survive, he has nearly cut it off.” The surgery had seemed to go very well. The team carefully drilled away the mastoid bone, dissected the cholesteatoma away from the tiny ossicles, and patched the tympanic membrane. The attending didn’t even seem concerned that the resident had made an incision that must have left the ear clinging to life on just a trickle of blood flow. To my dismay, the resident handed me the needle driver and said, “Let’s see how well you do with closing this incision.” He was taking me down with him! When the ear died and fell off, he would have me to blame it on. I couldn’t sleep that night. I came in 15 minutes early to round
the American way of life. I took a sabbatical from my training and practiced primary care in Pine City, Minn., for three and a half years. I resumed my training in hematology and oncology and completed my fellowship in Minnesota in 2005. Since then, I have been in private practice. Rewards/challenges: Delivering bad news to patients is never easy, and working with cancer patients means a lot of disheartening moments. On the other hand, I cannot imagine more joyous news than telling a patient, “Your cancer is in remission.” The anguish that my patients and their families go through is real and often palpable. Walking this journey with them is a privilege, given to me by them, their families, and their primary doctors who refer them to me. My patients are my heroes. I see incredible courage as they fight their illnesses. This job has certainly taught me a lot about life and what’s really important. It has taught me a great deal about the gifts of family, health, and life itself. For someone who has few months to live, every day is precious and memorable. It should be like this for all of us.
People often ask me, “How do you it?” The honest answer is, “I don’t know.” I rejoice at my victories and cry at my losses, but I still thank God every day for this calling. It has become harder to care for patients with cancer in the last couple of years. A lot of patients have lost jobs due to their illness and they cannot afford health insurance. It’s a common occurrence lately that patients’ main concern is not their cancer, but losing their home or not being able to feed their children. I cannot ignore this. What lies ahead? There has been a renaissance of new treatments for cancer over the last few years. The advent of targeted therapies such as imatinib and rituximab has revolutionized outcomes and tolerability by patients. Patients with renal cell carcinoma have choices not available to them a couple of years ago. Despite the daily challenges we face, these continue to be very exciting times for oncologists. The key is finding a balance between research and innovative therapies but still making cancer care available and affordable to everyone. I am not sure how to do this. Hopefully, smarter people than myself will figure it out soon.
and peeked under the ear dressing. The ear was pink and healthy. I was hooked. During my otolaryngology rotation, I helped perform a tracheotomy and place a PE tube, examined the inside of the nose and larynx with endoscopes, examined ears with microscopes. And when I became a resident, I reminded every medical student that the ear’s blood supply comes mostly from its anterior aspect—and that the large incision behind the ear would in no way put the ear in danger. Rewards/challenges: It may be a cliché, but the rewards have really come from helping people feel better, function better, and look better. Otolaryngology encompasses the treatment of disorders of hearing and balance, smell and taste, and communication and swallowing. Otolaryngologists can also affect how people breathe and use their voice. Having an impact on how people perceive their surroundings and how they are perceived by others is both challenging and rewarding. The challenges come from having outcomes that are less than you and the patient had hoped for. Sometimes there are outside factors beyond
your control, and sometimes you just wish things had gone better. I practice at the University of Minnesota and have the privilege of teaching residents and medical students and participating in the research mission. Being a part of this tremendously rewarding and stimulating environment in the midst of our current economic situation has added challenges to fulfilling our mission as clinicians, educators, and researchers. What lies ahead? Technology and treatment innovation have affected and will continue to affect how otolaryngologists treat their patients in future. Amazing advances in hearing aids and cochlear implants, tissue engineering to design compatible implants, face and larynx transplants, minimally invasive surgical techniques, and robotic surgery are all very exciting. These advances and a better understanding of pathways of disease and treatment will make the field of otolaryngology rewarding for both physicians and our patients. Innovation will help us bring these benefits to our patients in a cost-effective way. MAY 2011
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Rahshana Price-Isuk, MD Community health/family medicine, Neighborhood HealthSource, Minneapolis Years in practice: 6 How/why did you choose your specialty? I was in the family physician’s office discussing the management of a complicated patient: a 46-year-old African American female with dermatomyositis, hypertension, cardiomyopathy, renal insufficiency, depression, alcohol dependency, and homelessness. As we prepared to go to the family meeting, the family doctor turned to me and said: “All of your mother’s specialists have asked me how I put up with her. My response to them is, because I knew her when times were good.” Reflecting on this moment, which occurred when I was 24 years old, confirms what I have known since I was a child: It was my destiny to become a physician—a family physician. For more than 20 years our family’s physician, Dr. John Haugen, served as my sole example and definition of a doctor. In my eyes, family medicine was the only specialty and all physicians served in the same capacity as my family doctor. Since my childhood, he has managed our family
Ronnell Hansen, MD Staff radiologist, Minneapolis VA Medical Center; assistant professor of radiology, University of Minnesota Medical School (appointment pending); president, Hansen Imaging Diagnostics, PC Years in practice: 17 How/why did you choose your specialty? As the son of an electrical engineer and a computer applications specialist, medicine wasn’t always a part of my career plan. I was into analytics—chemistry and geophysics. The turning point was a VFW/AHA (American Heart Association) scholarship in high school that landed me in the electrophysiology lab of Dr. David Benditt at the University of Minnesota Heart Hospital—one of the luckiest things to happen to me. I worked there for over 10 years in research with AHA college/medical student grants and a threeyear Howard Hughes Medical Institute Research Training Fellowship for Medical Students (including a rare Return to Medical Studies grant). Analytics and computer skills helped me bridge clinical cardiology and biomedical engineering. One of my projects, imaging cardiac activation sequences, was closer to medical imaging of physiology than actual clinical medicine. My cardiologist mentors and radiology professor Dr. René DuCret guided me as a medical student into imag-
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medical problems, tackled our social issues, and provided a sound support system. Throughout a lot of family chaos, he has continued to be a caring and empathetic individual, which is just as important as his competency as a physician. As a young girl, my only desire was to one day give others what he had so freely given to me. Pursuing medicine, for me, has always been a means to touch the lives of others. My plan and desire has always been to give back to the Minneapolis North Side community, where I grew up, through the practice of medicine. Rewards/challenges: Given the reason I chose family medicine as my specialty, I have to say that my patients are truly my biggest reward. They trust me with some of the most intimate details of their lives in order to get the care they need. [I feel as if most of my patients accept me as part of their extended family!] I will be eternally grateful for this. The job I do is a privilege that I do not take lightly. Meeting the medical needs of patients and community has always been a chal-
lenge and likely will continue to be. The current challenges and potential barriers to meeting a myriad of needs include (but are not limited to): sicker patients signified by longer problem lists and more medications (for individual patients); an increase in stress-related illness (depression and anxiety) across all age groups; differing languages and (differing) cultural concepts of illness versus wellness; and insurance and other financial barriers. These all play a part in appropriate diagnosis and treatment of disease processes, while time allotted for direct patient care is limited. Balancing patient care, continuing medical education, continuous quality improvement, and family life is an ongoing challenge that has to be faced daily. What lies ahead? We as family physicians will re-establish ourselves as the foundation for health care delivery. We are not just the “gatekeepers” for medical services; we are the foundation of wellness—for individuals, for families, for life.
ing. I decided to swim with, not against, the current and pursued radiology. My current view: Our future is sometimes more random than we predict, and we must appreciate the advice of our colleagues who help us arrive where we belong. Rewards/challenges: For more than the past decade, radiology has been rife with the challenge of the technology explosion; it is frequently on the bleeding edge of implementation of what we are all now coming to understand as both the benefit and bane of e-systems in medicine, such as EHR/PACS/ RIS. In this realm, expertise in analytics is an asset. Professionally, I’ve benefited from the perfect storm: A U.S. Department of Energy Fellowship for Intensive Study in Nuclear Chemistry at Lawrence Livermore Laboratories during college; research-based computer exposure in Dr. Benditt’s lab; and a fellowship in IT for Radiology Departments when I trained at the University of Michigan all coalesced, tempering me into a reasonable consultant on tech implementation and purchasing for both practices and health systems. The challenge: understanding and separating the hype from the reality of technology marketing promises. The reward: making judicious choices that are truly cost-effective, peer-review-supported,
and patient-safety-focused. A tall order in the world of tech implementation! Separating practical reality from spin has become a habit and hobby for me. I enjoy serving on various legislative committees and boards while assessing public policy/health reform. I find students and colleagues eager to understand more about policies that affect their patients and practices—and potential policy consequences not always congruent with the “marketing.” I lecture on technology and public policy to Carleton premed classes, U of M med students, and metro-area radiology tech conferences; write articles for metro journals; and testify at the Legislature. It is, without question, in our best interest as physicians to understand evolving technology and health policy. What lies ahead? Continued technology expansion! How financial/innovation pressures of health reform will affect this, I am not certain, but I am guardedly pessimistic—and many economists and policy experts agree. Ideally, molecular medicine with targeted agents to image specific disease is the new frontier, as is improved quality imaging techniques with substantially reduced dose—hopefully all increasing diagnostic specificity and patient safety.
Cindy Firkins Smith, MD Dermatologist, Affiliated Community Medical Centers, Willmar; adjunct professor, Department of Dermatology, University of Minnesota Medical School, Minneapolis Years in practice: 21 How/why did you choose your specialty? I like to say that dermatology chose me. From an interest and talent standpoint, I was always more of an artist than scientist and toyed with a career in television journalism, but the practical side of me won out. I decided that I wanted a career for a lifetime, not one that would end when someone younger and better looking came along to replace me. So I chose medicine and entered medical school thinking that I wanted to pursue ob/gyn, but was completely open-minded about every possibility. I liked something about every rotation, but it was always the skin diseases that compelled and fascinated me. Dermatology is the perfect balance of art and science, research and practical application, medicine and surgery, young and old. For a visual artist who is fascinated by how people think, who likes to work with her hands, and who is still always looking for the
Lisa D. Erickson, MD Ob/gyn, reproductive endocrinology, and infertility specialist, Center for Reproductive Medicine, Minneapolis Years in practice: 22 How/why did you choose your specialty? I volunteered in an emergency room during my last semester of high school. When a job opened up in the summer, I became the ER orderly. I went on to become an EMT and an ambulance dispatcher, and then I completed paramedic school. Entering medical school, I already knew I wanted ER medicine. However, my first clinical rotation was ob/gyn in Waconia. While there, something strange and magical happened to me. I had stepped into a field steeped in history and folklore, rich in traditions and superstitions. There was an ebb and a flow, a beginning and an end, that revolves around the months, like the tides or the moon. We arrested labor; we induced labor. We prevented fertility; we assisted infertility. Babies arrived; families started. Some of the patients had never seen a “woman doctor,” and they were as delighted to see me as I was to be treating them. I went to clinic, the ER, the OR, L&D (labor and delivery), all at top speed—the more variety, the better. I was hooked on health care for women. In 1983 I entered my ob/gyn residency at St. Paul Ramsey Medical Center just five
answers, there couldn’t be a better job. Rewards/challenges: Dermatology is challenged in the same way that all medical specialties are challenged: trying to do more with shrinking resources, trying to do what’s right for patients despite arbitrary insurance company dictums. Practicing dermatology primarily in a rural setting, I am particularly challenged by the shortage and maldistribution of dermatologists, particularly dermatologists willing to care for complicated medical dermatology problems. There aren’t enough hours in the day, days in the week, or weeks in the year to see everyone who needs to be seen. I am always rewarded when someone offers heartfelt thanks for making them better, especially when I am the fourth or fifth doctor they’ve seen. I love it when the teenager whose formerly severe acne nearly kept her homebound now greets me with a smile and shares her prom pictures. When I have removed a huge skin cancer and repaired it with a complex flap and have to refer to photographs to locate the scar, that
is tremendously rewarding. Perhaps most rewarding is knowing that I have saved many lives by identifying and excising melanoma in its early, curable stages. What lies ahead? I’ve thought about that and I just don’t know. My specialty is a mix of medical, surgical, and what many might deem cosmetic components. Removing a skin cancer might be necessary to save a life or save a nose, but should society pay the burden for a cosmetically appealing reconstruction or just leave a hole to heal on its own? Psoriasis is a physically and socially debilitating disease, but some of the new biologics can cost $20,000 a year or more to treat it. Severe acne, if left untreated, can leave lifetime scarring, but a teenager will usually not die from it. Who decides what disease or what patient justifies what treatment? I don’t know. I suspect that in the next decade my specialty, like all of medicine, will change. But I have no doubt that dermatology—unique in its combination of art and science, medicine and surgery—will survive.
years after the birth of the first test-tube baby. At that time, advances in reproductive endocrinology and infertility were on a logarithmic rise. The first pregnancy resulting from a donated egg was reported in 1983, and the first birth from a frozen embryo in 1984. In 1991, intracytoplasmic sperm injection (ICSI) revolutionized treatment of male factor infertility. In vitro fertilization (IVF) was in its infancy. The legal, philosophical, ethical, and moral issues were being hotly debated when I entered my fellowship at the Mayo Clinic. Rewards/challenges: The rewards are seen in the positive pregnancy tests resulting in a healthy baby. The rewards are also seen in watching patients overcome adversity with resiliency and perseverance. Four million babies worldwide have been conceived with IVF. One challenge is age. Birth control and higher education for women have resulted in an elective delay in childbearing. Women who wait until their 30s or older to conceive experience higher rates of infertility due to diminished ovarian reserve. Our most important challenge is to avoid multiples. A singleton pregnancy is desired and best achieved by transferring a single embryo with IVF. Patients who elect
to transfer more than one embryo need to understand their increased risk of complications. What lies ahead? Third-party reproduction continues to grow. Donor egg, donor sperm, gestational carriers, and embryo donation are all available. These programs require sophisticated support services. Reproductive tourism is on the rise; when countries legislate against services, patients travel to where they can find services. Preimplantation genetic diagnosis (PGD) is currently the most exciting area of assisted reproduction. It involves testing for aneuploidy, single gene disorders, translocations, and HLA typing. PGD can reduce the chances for a pregnancy to be affected by a specific genetic condition or chromosomal abnormality. Egg freezing eliminates the moral issues regarding supernumerary embryos obtained from IVF. Patients may elect the number of eggs they choose to fertilize and freeze the remaining eggs for their future use. Egg freezing can also be done prior to cancer treatment. This field is only 33 years old, and I expect to see continuous dramatic improvements. It is very humbling.
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SPECIAL
Rare diseases are beginning to get the attention that patients and families have long sought. This month’s special focus
FOCUS:
RARE
DISEASES
Developing drugs to treat rare diseases The U of M Center for Orphan Drug Research By James Cloyd, PharmD
looks at four Minnesotabased advances: research to develop new or improved drug therapies to treat rare disorders, a registry for a rare form of lung cancer in children, studies that offer hope to Huntington’s disease patients and their families, and an organization to encourage partnerships to address the needs of patients and families coping with a rare disease.
R
are diseases, as defined by the 1983 United States Orphan Drug Act, are conditions affecting fewer than 200,000 people. Some rare diseases, such as cystic fibrosis, are well known to the public, while many others, such as adrenoleukodystrophy, Dravet’s syndrome, and Refsum disease, are unknown even to most physicians. There are an estimated 7,000 medical problems that meet the rare-disease definition, and with advances in human genetics, the number will increase. Individually these disorders are uncommon, but collectively they affect nearly 30 million people, many of whom are children, in the United States.
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For decades, Americans with rare diseases had little hope; often diagnosis was delayed, if made at all, and few treatment options were available. Now the Center for Orphan Drug Research (CODR) at the University of Minnesota is working to address this unmet medical need by developing new or improved therapies for rare disorders. CODR was established in 2005 as a result of a large gift to the College of Pharmacy. Its mission is to improve the care of individuals suffering from rare diseases through research on new drug therapies; education of health professionals and health professions students; and contributions to the discussion and formulation of public policy relating to rare diseases and orphan drugs. The primary focus of the center’s research is rare pediatric neurological disorders. Interest in orphan drugs has accelerated since the enactment of the Orphan Drug Act in 1983. The act, which provides incentives such as market exclusivity, tax credits, and grants, was designed to attract companies and other organizations to orphan drug development. It has been remarkably successful: More than 2,308 drugs or biologics have been designated orphan products, of which 367 have been approved by the Food and Drug Administration (FDA) for one or more rare diseases (FDA Law Blog, Jan. 13, 2011: www. fdalawblog.net/fda_law_blog_ hyman_phelps/orphan-drugs/). Much of this productivity has taken place in the last 10 years. The most common indications for orphan drugs are rare cancers, metabolic diseases, and neurological disorders. A new approach to drug development
Since its inception, CODR has employed a multidisciplinary
approach to drug development, bringing together basic scientists, clinical pharmacologists, and physicians to work collaboratively on research projects. In addition, the center leverages the outstanding faculty and resources in the University of Minnesota Medical School, the College of Veterinary Medicine, and the College of Pharmacy, and has established partnerships with the pharmaceutical industry to accomplish its goals. Our general approach to development is to identify marketed drugs, usually generics, that show promise in treating a rare disorder. The pharmaceutical industry typically is uninterested in generic drugs because it is difficult for companies to recover the cost of the research needed for FDA approval. In contrast, the CODR is able to pursue these projects using grants from the university, government, and foundations. The research needed to determine whether a drug is safe and effective may include development of a new formulation to meet the specific need of the affected population (e.g., young children), as well as animal research, pharmacokinetic and safety studies in healthy volunteers and patients, and phase 2 proof-of-concept trials. In some cases, a company may assume responsibility for the final stages of development and FDA approval. In other cases, where commercial development is unlikely, the center will complete the research needed to establish safety and efficacy and then publish the study results in peer-reviewed journals, allowing clinicians to use the information to treat the rare disease. Drug development projects
In its first five years, the CODR has obtained several million dollars from the University of Minnesota, industry, foundations, and the FDA Orphan Grant program to support its research. Current center projects include: Nasal benzodiazepine for seizure emergencies. A small subset of people with epilepsy, particularly developmentally disabled children, are prone to seizure clusters and status
epilepticus. These emergencies have devastating effects on health and quality of life. Delays in treatment may result in refractory seizures, increased morbidity and mortality, and higher medical costs. The center is partnering with a small pharmaceutical company to develop a novel, FDA-approved, intranasal diazepam delivery system for the treatment of seizure emergencies in children and adults. The availability of a safe, effective, and easily administered therapy allowing patients, parents, or caregivers to initiate treatment at the onset of a seizure emergency would greatly improve the management of epilepsy. Intravenous baclofen for management of baclofen withdrawal syndrome. Baclofen is a generic drug commonly used to treat spasticity such as that which occurs in children with cerebral palsy. It is most often taken orally, although some patients are treated with an intrathecal pump. Acute withdrawal syndrome can occur when spinal cord infusion of
FIGURE 1. Survival following hematopoietic stem cell transplantation (HSCT) with and without N-acetylcysteine (NAC). Survival after HSCT + NAC is superior to survival after HSCT alone. Survival of eight consecutive ALD patients with severe disease (defined as PIQ < 80 and Loes score > 14) who received HSCT at this institution is zero at one year after HSCT. In contrast, all three adrenoleukodystrophy (ALD) patients (with the same degree of severity) who received NAC before and after HSCT are alive between eight and 11 months after HSCT. A test for the quality of the survival distributions using log rank statistic was significant (3.91, df = 1, P < 0.05). Reference: J. Tolar et al., Bone Marrow Transplantation (2007) 39, 213. baclofen is interrupted due to pump dysfunction, catheter dislocation, or site infection; or when oral baclofen is interrupted because of a patient’s inability to take medications by mouth. An estimated 5,000 cases of acute baclofen withdrawal occur each year. The center is undertaking the development of an intravenous formulation of baclofen as a means to treat this condition more effectively. Dose escalation studies in research animals indicate that the formulation is safe and follows pre-
dictable pharmacokinetics. The next step in this project is to apply for orphan drug designation and initiate a safety and pharmacokinetic study in healthy adult volunteers. Use of N-acetylcysteine as adjunctive therapy in childhood cerebral adrenoleukodystrophy. Childhood cerebral adrenoleukodystrophy (CCALD) is an X-linked peroxisomal disorder that results in demyelination of the central nervous system and early death. It affects approximately 20,000 boys in the U.S. Hematopoietic stem
cell transplantation (HSCT) halts disease progression and extends life when CCALD is diagnosed and treated at an early stage. HSCT for late-stage disease is offered at some centers, including the University of Minnesota. Initial results were poor; but, as shown in Figure 1, the addition of N-acetylcysteine (NAC), an antioxidant that reduces free radicals and facilitates glutathione biosynthesis, significantly improves outcome (Tolar et al., Bone Marrow Transpl, 2007). ORPHAN DRUGS to page 38
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MINNESOTA PHYSICIAN
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How a registry was born
One of the first cases of PPB in the U.S. was treated at Children’s Hospitals and Clinics of Minnesota in 1982. Two-yearold Trisha Schoettler Anderson presented with several episodes of severe respiratory distress and collapsed lung due to the unrecognized cystic form of PPB. Trisha responded well to treatment, but two years later her 3-year-old brother devel-
By Jack Priest, MD, and Yoav Messinger, MD oped a more severe form of PPB and died. Years later, two other brothers were discovered to have a benign form of PPB. Given the rarity of the disease, it was troubling to have multiple diagnoses within the same family. Because Trisha’s family was cared for at Children’s and because we had been involved with the original medical description of PPB along with University of Minnesota physicians, we developed an interest in PPB. We fielded questions and collected inquiries from around the world. It turned out that other families had more than one case of PPB and that
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Building a registry for a rare disease
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Breaking ground in childhood cancer research
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leuropulmonary blastoma, or PPB, affects about 25 children in the United States each year. PPB is such an unusual form of lung cancer in children that many physicians are still unaware of the condition. Its symptoms, such as mild to severe respiratory distress, can be easily confused either with benign congenital lung cysts or pneumonia (see sidebar). A so-called orphan disease, PPB is so rare that it wasn’t officially named until 1986, after a team of Minnesota doctors began researching and gathering information about the disease.
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MINNESOTA PHYSICIAN MAY 2011
an unusual set of childhood diseases occurred with PPB in these families. We knew that in order to find the best treatment, the medical community needed to start monitoring PPB cases to track treatment successes and to identify the genetic nature of the disease. Toward that end, we at Children’s have collaborated since 1987 with researchers from the Washington University School of Medicine in St. Louis and, more recently, Children’s National Medical Center in Washington on the International PPB Registry, headquartered at Children’s. The registry is entirely nonprofit, concerned only with clinical and scientific advancements, and funded since 1987 entirely by Minnesota philanthropy. Its mission is simple: to improve the diagnosis and care of children with PPB. Today, the International PPB Registry is the only organization in the world focused on this disease. The registry strives to enroll all patients diagnosed with the disease and tracks PPB clinical data, including symptoms, diagnosis, treatments, and longterm follow-up, while providing expert pathologic review and collecting clinical and outcome data to provide clinicians and families with sound treatment recommendations. Early registry findings
Through more than two decades of collecting and analyzing data, the International PBB Registry has uncovered a great deal about this type of cancer. Three forms of PPB are known, which, on average, are diagnosed from age 9 months through 4 years. PPB is very treatable if diagnosed early, like
Trisha’s PPB. Roughly 90 percent of PPB patients with the earliest stage of the disease (Type I) are curable using surgery and chemotherapy. However, it is cured just more than 50 percent of the time if diagnosed in later stages (Type II or Type III). Major research breakthrough
A major focus of the registry has been the familial aspect of the disease. In 2008, through the work of the registry, our collaborating team from Washington University and Children’s made a groundbreaking discovery, identifying mutations in a specific gene that make a child vulnerable to PPB. The gene is called DICER1, so named because its job is to chop up large molecules into smaller control molecules that help regulate the output of many of the 30,000 human genes. Patients with mutations in DICER1 are more likely to develop PPB or other related developmental tumors. The discovery of the DICER1 gene has major implications for PPB families, as it is now possible for PPB survivors to have their children tested to determine if they are at risk for the disease. It was also a significant breakthrough for cancer research overall. While observing PPB cells, researchers found that healthy cells in the lungs may be instructing neighboring cells to become cancerous— something that hadn’t been previously observed as a mechanism of cancer biology. The discovery of DICER1 as the genetic basis of familial PPB, published in Science (Aug 21, 2009; Vol. 325, p965), resulted in much excitement within the scientific community. In addition, because the DICER1 gene itself controls most other genes and because families with PPB have many different kinds of cancers and other medical problems, the discovery of a disease in this control system has major scientific importance. Lessons from PPB will extend into research of many other childhood and adult cancers.
Pleuropulmonary blastoma Looking forward
Thanks to the many families and physicians who participate in the International PPB Registry, we have collected data from more than 300 PPB patients and their family members from around the world. Multiple studies have been published on the topic, virtually all coming from Children’s and registry collaborators. Not only has this in-depth data collection helped physicians and researchers better understand the disease, but it has also been instrumental in providing clues to its genetic cause. While a cure for PPB has not yet been identified, the registry’s research and recent findings represent a big step toward knowing how and why it occurs. A sign of progress is that 32 percent of such cases are now diagnosed in the earliest and most treatable stage. Previously, just 16 percent of children with PPB were diagnosed that early. The registry has also overturned several incorrect diagnoses of PPB—in some cases sparing children
Pleuropulmonary blastoma (PPB) is a rare, soft-tissue sarcoma occurring in children under the age of 7–8 years Symptoms of PPB: • respiratory distress • coughing blood • fever • cough • chest pain • asymptomatic in early stages Types of PPB Type I: • made up of cysts, with early evidence that it is cancerous • difficult to find and diagnose in this early form • occurs in very young children (on average, 10 months to 2 years)
with benign conditions the harsh chemotherapy. In addition to PPB, registry physicians have identified two other childhood illnesses that mimic PPB and have described them in recent medical literature. The registry is currently initiating a worldwide study of PPB treatments. It also sponsors national and international
• has a better chance of being successfully treated than Types II and III Type Ir (the “r” stands for regressing): • similar to Type I, but does not have cancerous cells Type II and Type III: • cancerous tumors requiring intensive chemotherapy • generally occur in children between the ages of 2 years and 7 years (typically, ages 3 or 4) • Type II shows thickening areas (nodules) within this cystic lesion; Type III shows solid masses family education meetings every two years. For 25 years this effort has been mainly supported by the Pine Tree Apple Tennis Classic (PTATC), a local White Bear Lake philanthropy. This fund allowed research into this rare tumor and has been committed when no other funding was available. The finding of
DICER1 mutations sparked funding agencies such as the NIH to support the genetic research of PPB and related diseases. The National Institutes of Health is now funding two studies of the PPB family syndrome, and collaborators from Canada, the United Kingdom, and other institutions in the U.S. are actively working on the PPB Family Tumor and Dysplasia Syndrome. However, the registry and clinical research will be funded continuously by the Minnesota local PTATC and additional local and national funds. There’s more work to be done, but our small, dedicated team pledges to continue until a cure is found. Jack Priest, MD, a pediatric oncologist, is the founder and research director of the International Pleuropulmonary Blastoma Registry at Children’s Hospitals and Clinics of Minnesota. Yoav Messinger, MD, is the registry’s medical director. An active pediatric oncologist, Messinger oversees the activities of the registry.
MAY 2011
MINNESOTA PHYSICIAN
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T
he single most important thing to know about Huntington’s disease (HD) is this: There is never “nothing I can do” for a person confronting this difficult disease. Though disease-modifying treatments have yet to be identified for any neurodegenerative disease, patients with HD benefit from symptomatic therapy, education, and proactive management of disease complications. HD is a neurodegenerative disease, an adult-onset genetic disorder, a movement disorder, a dementing disorder, and a psychiatric disease. The onset age is widely variable, with an average in the fourth decade. Importantly, all affected individuals have the same root cause of their disease: a CAG repeat expansion in the huntingtin gene. The variation in onset age is partially explained by the size of the CAG repeat expansion, with larger repeat sequences associated with earlier onset ages. The typical course of HD is 15–20 years after diagnosis. HD occurs in about 1 in 10,000 people; more than a quarter of a million
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Huntington’s disease Clinical research gathers steam, gives families and patients hope By Martha Nance, MD Americans have HD or are “at risk” of inheriting the disease from an affected parent. Although it is individuals who are affected with the disease, the unit of care in HD is truly the family. No single health professional can provide all of the services an HD family needs;
Symptoms
The primary symptoms of HD include the movement disorder, dementia, psychiatric and behavioral disturbance, and weight loss. The movement disorder includes the presence of involuntary movements (chorea, atheto-
No single health professional can provide all of the services an HD family needs. the HD Center of Excellence at Hennepin County Medical Center has been providing teambased care for HD patients and their families since 1977, and serves as a model for multidisciplinary chronic disease management.
sis, myoclonus, or tic-like movements); increased muscle tone (dystonia); and loss of coordination of volitional movements, which leads to progressive impairment in gait and performance of the activities of daily living, and oral-motor dysfunction
(dysphagia and dysarthria). The dementia includes slowness of mental processing, impairment of executive function and learning, and difficulty initiating, sequencing, and persisting at complex cognitive tasks (and, eventually, even simple motor tasks). In contrast with Alzheimer’s disease, individuals with HD generally do not have prominent dysfunction of language, visual perception, mathematical skills, or other cortical functions. The psychological, psychiatric, and behavioral disturbances in HD are variable in nature and severity, with depression, anxiety, and irritability being extremely common and paranoia, overt hallucinations, and mania much less common. Impulsivity, substance abuse, obsessive-compulsive symptoms, explosive behaviors, apathy, and sleep disturbances are also common. Weight loss in HD is multifactorial, in some patients caused by excess expenditure of calories due to severe chorea, and in others by financial con-
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straints, inability to prepare food, choking, food obsessions or restrictions, or a combination of several factors.
TABLE 1. Huntingon’s disease-related symptoms for which prescription medications may be considered Symptom
Medications to consider (all “off-label” except tetrabenazine for chorea)
Chorea
Tetrabenazine; possibly dopamine-blocking agents (neuroleptics), amantadine, benzodiazepines (particularly if movements are worse with anxiety)
Dementia
None; case series suggest that cholinesterase inhibitors and memantine are safe, but no firm evidence of efficacy
Depression
Any of a large number of antidepressants
Anxiety
Benzodiazepines
Obsessiveness
SRIs are often used as a first choice
Irritability
Antidepressants (if there is underlying depression); neuroleptics (particularly if there is underlying suspiciousness or paranoia); anticonvulsants (used as mood stabilizers) such as valproic acid, lamotrigine
Paranoia, suspiciousness, delusions, hallucinations
Neuroleptics (none proven to be more effective than any others)
Apathy
Activating antidepressants (e.g., venlafaxine, fluoxetine); stimulants (e.g., methylphenidate) used with caution because of the potential to exacerbate irritability and aggressiveness, which may coexist in a patient with apathy
Explosive or impulsive behavior
Beta-blockers, anticonvulsants (used as mood stabilizers) such as valproic acid or lamotrigine; benzodiazepines (may reduce coexisting anxiety); prn use of benzodiazepines or neuroleptics
Perseveration
SSRIs may be tried
Sleep disturbance
Sedating antidepressant (particularly if there is coexisting depression), temazepam or clonazepam (longer-acting benzodiazepines)
Treatment
The goals of HD treatment are 1) to maintain function, 2) to minimize side effects, 3) to ensure that milestones of disease progression do not come as a surprise to the patient or family, and 4) to improve the quality of life. Patients, caregivers, and at-risk children all need support and education. All at-risk and diagnosed individuals should be offered genetic counseling, as misunderstandings about genetic risk still abound; and some at-risk adults may be interested in predictive genetic testing. HD-related symptoms for which prescription medications might be used are shown in Table 1. The only medication that has a specific indication for use in Huntington’s disease is tetrabenazine, which was approved by the FDA in 2008 for the treatment of chorea. All other uses of any medication could be considered “off-label,”
except insofar as they are used to treat the same kind of symptoms (such as depression or anxiety) in people who do not have HD. No specific psychoactive drug must be avoided because of the underlying diagnosis of HD, but recommendations of specific medications are based purely on physician preference or expert opinion. Allied health professionals play an important role in the management of HD (see Table 2). Throughout the course of HD, including the end stages, much can be done to relieve the burden of HD on the patient and the family, and to help them to prepare for the future. HD families in Minnesota can take advantage of the HD Center of Excellence at HCMC, as well as remarkable resources, not available in most parts of the country, including a long-term care unit specializing in HD (at Good Samaritan-University Specialty Care), three family-run HD group homes, and a wide variety of lay chapter-organized support groups, advocacy efforts, and HUNTINGTON’S to page 36
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Medical Director of Community-Based Outpatient Clinics The Minneapolis VA Medical Center (MVAMC), affiliated with the University of Minnesota, is seeking a dynamic leader for the position of Medical Director of the Community-Based Outpatient Clinics (CBOCs).The Director supervises the clinical operations and providers of 10 clinics throughout Minnesota and Wisconsin, and oversees the development of several new clinics in both metropolitan and rural settings.We seek a physician with experience in ambulatory medicine and administration who will provide leadership and clinical duties for the CBOCs.The CBOCs provide primary care, and mental health care onsite and through telemedicine to more than 20,000 veterans.This position would include an academic appointment at the University of Minnesota. Applicants must be board-certified in Internal Medicine and experience working in VA facilities is preferred. Competitive salary, recruitment incentive, and benefits with performance pay. Send CV and application to: Human Resources Management Service Attention: Brittany Buck MVAMC One Veterans Drive Minneapolis, MN 55417 or, e-mail Brittany.Buck@va.gov For additional information, please call 612-725-2060. Equal Opportunity Employer MAY 2011
MINNESOTA PHYSICIAN
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A
fter a quick examination of my 12-year-old son, the doctor asked me to step outside the intensive care unit room before he continued on his morning rounds. My son, Michael, was in the midst of a lengthy hospital stay after a traumatic code blue incident that had resulted from several staffing errors. The doctor proceeded to offer harsh and unsolicited opinions about Michael’s behavior during his recovery from an induced coma, as well as my role as Michael’s mother. Interrupting him a few minutes into the one-sided conversation, I asked the doctor if he had ever heard of Michael’s complex and rare disease, Schimke immunoosseous dysplasia (SIOD). Despite his strong opinions on Michael’s condition, he had never treated an SIOD patient or even heard of the disease. It was after this brief consult in the ICU hallway that I knew, without doubt, our health care system desperately needed healthier patient/family/ provider relationships. My story is one of many
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The patient-family perspective Uniting the human experience and the medical experience By Theresa Zimanske that illustrate the need for understanding the patient and family perspectives in health care, particularly in addressing the unique challenges of living with rare diseases. Communicating our challenges helps narrow the gaps in perspective between providers and families/patients and offers the opportunity to use the expertise of shared experiences to ensure a positive outcome for all. A spectrum of health care experiences
In 1999, following an exhausting two-year diagnostic rollercoaster ride, my son was diagnosed at the age of 7 with SIOD. SIOD is an autosomal
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MINNESOTA PHYSICIAN MAY 2011
recessive multisystem disorder characterized by spondyloepiphyseal dysplasia (SED) resulting in disproportionate short stature, nephropathy, and T-cell deficiency. At the time of Michael’s diagnosis, he was one of 25 SIOD patients in the world afflicted with this extremely rare syndrome. Knowing that many rare diseases are misdiagnosed, we were grateful to finally have an answer for Michael’s variety of symptoms. His diagnosis was complex, involving five areas of his body. We had to call in cardiology, nephrology, neurology, genetics, and orthopedics, among other specialties, to treat him. The inability to schedule multiple specialty care appointments together in one day, due to independent clinic/provider schedules, was a constant source of frustration to us. In addition, the results from one specialty care appointment often were not communicated in a timely manner, slowing the effectiveness of another appointment. Though “patientcentered care coordination” was discussed, in reality it was never implemented. Over time, we became more and more frustrated for Michael, and our family was left extremely vulnerable. Michael’s life with this horrible progressive disease ended abruptly in March 2005 after 13 years of suffering through the complications of SIOD. Our family’s journey with Michael and SIOD was eight years of intense education and training on how to maintain a family life inside the chaos of a rare disease and the medical environment. The spectrum of difficult health care experiences produced a diploma’s worth of valuable knowledge, but no
celebratory ceremony. It was through these experiences that I realized the undeniable value of the patient and family perspective in health care. My passion for this relational approach has led to the creation of Be The Change (BTC), an organization I founded to share Michael’s story and to educate others about the importance of creating a provider/family/patient partnership. BTC is the missing link between the patient and family perspective and the medical perspective, and sharing the human experience within the medical experience. BTC builds a shared platform for all of us to stand on as partners, outside of medical trauma or crisis, allowing the knowledge of prior experiences to inform present and future experiences. BTC gives a face and voice to the patient and family perspective, which uses real experiences to strengthen relationships and create partnerships with medical providers to improve current methodologies and the quality of health care. We heard buzz words like “patient/family-centered care” and “coordinated care” during Michael’s medical journey, but they were not demonstrated in action. Patient- and familycentered care is necessary in any treatment plan, but it is even more critical for patients and families with rare and chronic diseases. It requires a belief system that’s filled with processes set apart and uniquely defined for rare-disease patients and their families. A message for health care providers
As a mother of a child with a rare disease, I encountered many challenges with the medical community, who I know were equally challenged in delivering high-quality health care plus high-quality family life to patients and families with rare diseases. The medical world is complex and fastpaced, but working together we can Be The Change. Here are some things that health care providers can do to support patients and families in
this partnership: • Learn about the rare disease. A rare disease diagnosis requires additional time prior to the consult or examination to understand the disease, its varying complications, and possible treatment options. This sometimes requires the provider to go beyond conventional methods and individual opinions or agendas. • Develop a personal relationship with patients and families. Rare-disease patients and families need providers to know their life outside of the medical arena to avoid misjudgments or incorrect assumptions. Patient and family-centered care means addressing emotional and spiritual needs, which are attached to physical needs, to help produce the best possible outcome. • Recognize the increased demands on marriages and siblings. A partnership of patients, their families, and providers means providing timely, flexible appointments that accommodate school, work, and home schedules; this is critical with patients who have an unknown prognosis. Patients with rare or chronic disease have complications that require longer appointment times and need a continuity of care that avoids additional problems. Coordinated care for rare-disease patients with multiple specialties is a must, so that multiple appointments can be scheduled together on one day. This coordinated scheduling should be handled by clinic staff, not the rare-disease patient or family. • Respect the knowledge rare disease patients and families have acquired. Each person brings something of value to the table. In a rare-disease diagnosis, it’s critical that the patient, family, and provider act as trusted partners and share the vast amount of information they have all acquired over the course of the illness. • Be honest in admitting your own limitations. It’s essential that providers always be hon-
Michael Zimanske (far left) died at age 13 of the rare disease Schimke immunoosseous dysplasia. At left: Jessica (Michael’s sister), Theresa, and Donn Zimanske.
est when they feel overwhelmed or are not educated in the rare-disease diagnosis. Rare-disease patients and their families are uniquely vulnerable and suffer in many ways, both physically and emotionally, from decisions and choices medical providers make when they are unable to truthfully come forward when unequipped to handle the situation at hand. Facing challenges together
Our son challenged medical providers to recognize he was a boy with a life outside the complex rare disease he was forced to live with. Again and again, he asked medical providers to respect his years of medical experience despite his young age or sick body and include him in the decisionmaking process. The challenge for patients and families with a rare disease like Michael’s isn’t just in the medical care, but in what happens after leaving the clinic or hospital. Providers need to keep in mind that patients and their families cannot separate emotion from the disease, for good reason: When you’re told your son won’t live to be a teenager and that 85 percent of marriages involved in this type of medical scenario end in divorce, you need more than a reminder to “pick up the prescription when you leave” and a next-appointment card. Providers should regularly ask themselves and their staff, “Do we operate in concrete ways that coordinate care and put the patient and family first, or do we serve our agenda more than the patient’s and family’s?” Allow the impact of a boy named Michael with a rare disease to guide you in your practice as you embrace the patient and family perspective. Step outside your office or examina-
tion room and really look at your patients and their families, especially those affected by a rare disease. Examine their faces, not their diagnosis. They are beyond tired, weary to their core, struggling to stay hopeful, positive, and committed while consumed with worry, confusion, and the burden of what this diagnosis will do to someone they love. Hold the hand of a rare-disease patient or family member and admit you don’t completely understand the complexity of the rare-disease diagnosis, but show them you’re willing to stand with them and fight it. Rare-disease patients and families need you to partner with them and be there for
them in a distinctive way. From the grateful and hopeful heart of a mother, I ask you to value your rare-disease patients in a new way and unburden them of one of their challenges by forming real relationships with them. See them as individuals, see their families, and see the life that inspires them to keep fighting that disease. You will never regret the opportunity. Theresa Zimanske is founder of Be The Change (http://bethechangemn.com), an organization representing the patient and family perspectives in health care, and writes the Be The Change blog (http://theresazimanske.blogspot.com). She lives in Lakeville, Minn.
Caring for mind, body and spirit. Mille Lacs Health System is seeking a Family Physician to join their rural practice on the southern tip of Lake Mille Lacs in Onamia, Minnesota. Our 7 Family Physicians, 8 PAs, and a Gen Surgeon provide a unique rural health opportunity with 4 outreach clinics, a 25-bed Critical Access Hospital, and attached Geriatric Psych Unit and LTC facility. We also provide services to the Mille Lacs Band of Ojibwe. Minimum qualifications: Must have an MD/DO in medicine from an accredited school and be licensed to practice in the state of Minnesota. Must have current appropriate Certifications
of Registration and a minimum two years of direct work or intern experience. • ER is staffed 24/7 by skilled PAs • OB is required; C-section training is a bonus • Guaranteed competitive salary Mille Lacs Health System is an integrated healthcare organization that tends to the lifelong healthcare needs of all its patients. Come live where there is excellent hunting, fishing, and cross-country skiing. Practice medicine where your skills and experience can be fully utilized, and where you can make a difference.
Please send inquiries to; Rob Stiles; 320-532-2606 rstiles@mlhealth.org or Dr. Tom Bracken; tbracken@mlhealth.org ONAMIA • ISLE • HILLMAN • GARRISON • MILACA
MAY 2011
MINNESOTA PHYSICIAN
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PROFESSIONAL
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s America ages, more and more patients and their families will be struggling with how to make informed decisions about longterm care (LTC). They see physicians as a trusted and informed source of information. Indeed, physicians can—and should—be informants, advocates, and facilitators of this big leap for their patients. But to meet that responsibility, physicians will have to become more informed. While most physicians are not ready or able to devote the necessary time to the often complex counseling that surrounds LTC decisionmaking, they need to be able to help families identify people who can fill that role. At a minimum, physicians need to know the LTC options available in their communities and to be able to discuss the pros and cons of each. They need to be able to provide (or direct families to appropriate sources for) information on the likelihood that different forms of LTC will be able to achieve the family’s primary goal.
U P D AT E :
GERONTOLOGY
Navigating the world of long-term care Physicians can be a key resource in helping patients meet challenges of aging By Robert L. Kane, MD Someone needs to help the family sort out its goals and recognize the potential tensions between alternatives like safety and autonomy. Physicians
rest of an older person’s life. Professional guidance by an informed but disinterested facilitator is critical during the hospital discharge process. But
Physicians are in a unique position to steer patients and their families toward quality resources and good, informed decisions. should be advocates for the family, often in stressful times like hospital discharges, when discharge planners are pressing for a quick decision to a complex problem that will affect the
hospital discharge planners may not always be well suited to assisting with long-term care decisions because their mandate is rapid discharge. Physicians, on the other hand, can advocate for better decisionmaking. Unfortunately, this vital assistance is not reimbursed. Medicare does not pay for counseling or decision facilitation. Counties have LTC coordinators who are trained to help families understand their options. In theory this service is open to all, but it often focuses on Medicaid clients. Private-pay patients will often have to hire their own case managers. It is worth the investment. Families need informed advocates. They are neophytes in the LTC world. They don’t know what questions to ask. They don’t understand how to prioritize their goals. Frequently intra-family discord complicates the discussion of vital LTC issues and the choices that go with them. Helpful resources
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In an article for the Jan. 19, 2011, issue of the Journal of the American Medical Association (see sidebar), I wrote about how physicians can help patients find the right level of care following a patient’s hospiMINNESOTA PHYSICIAN MAY 2011
talization. In the JAMA piece, I outline the need for evaluating each patient’s care goals, family circumstances and resources, and clinical status to determine if more aggressive medical care might improve an individual’s clinical trajectory. Even if the physician can’t serve as the planning facilitator, he or she should ensure that this task is done well. More than just learning about long-term care options, caregivers must also prepare financially, emotionally, and practically for the job they face. Physicians, no doubt, will be asked more and more in the coming years for tools to help the more than 15 million adult children who care for their elderly parents. I recently published a survival guide for caregivers to help them deal with the complex and taxing challenges of providing assistance to family members, “The Good Caregiver: A One-of-a-Kind Compassionate Resource for Anyone Caring for an Aging Loved One” (Penguin Group, 2011). For those unexpectedly facing the caregiving role for the first time, the book can be read as an instruction manual, covering the nittygritty realities of caring for an older person. Advice on the nuts and bolts of managing care for a loved one can make a lasting impact on the quality of life for everyone involved. For the rest of us—those who will likely care for a loved one in the years to come—“The Good Caregiver” can be read as an essential planner. Preparing to care is key to avoiding hasty decisions later on, often in a time of crisis. Nursing home report cards
Ideally, patients and their families can make decisions about long-term care before incidence of hospitalization. But even then, the task can be overwhelming. A few years ago, the University of Minnesota School of Public Health partnered with the State of Minnesota to develop a tool to help consumers find the right long-term care, based on their unique needs, and to motivate improvements among low-scoring facilities.
For more information The Nursing Home Report Card rates each of the state’s 379 certified facilities. Each nursing home can receive up to five stars. The rankings are based on factors such as hours of direct care, staff turnover, state inspections, and quality of life. Users of the site enter a ZIP code and range of miles, and select among a list of priorities to access a customized list ranked by those criteria. While other states have published nursing home ratings, Minnesota’s system is the first to include eight quality measures, including quality-oflife measures based on a survey of more than one-third of the state’s 13,000 nursing home residents. New surveys are conducted every year, and at least 25 residents in each home are interviewed. The report card—the most comprehensive tool of its kind nationally—is designed so that users can prioritize the quality measures based on their needs. The online resource is a good place to start—it’s a screening
• “Finding the Right Level of Posthospital Care,” Journal of the American Medical Association, can be accessed at http://jama.ama-assn.org/content/305/3/284.full. • The Minnesota Nursing Home Report Card is available at www.health.state.mn.us/nhreportcard. • To learn more about Professionals with Personal Experience with Chronic Care, go to www.ppecc.org. • “It Shouldn’t Be This Way” and “The Good Caregiver” are available from major book retailers. tool that can help patients and families begin their search. “It shouldn’t be this way”
For more than 40 years, I’ve worked in the field of aging and long-term care. I’ve written more than 30 books and 300 articles on the subject. A few years ago, I had to arrange longterm care for my mother, who had suffered a stroke. Despite a lifetime of professional expertise and a long list of personal contacts, I couldn’t get the system to work right. If I was having troubles, I wondered how someone coming to long-term care for the first time would be able to make good decisions. Those experiences prompted me, along with
my sister Joan West, to write a book designed to help families navigate the confusing world of hospitals, clinics, and long-term care. Part memoir, part selfhelp, “It Shouldn’t Be This Way: The Failure of Long-Term Care” (Vanderbilt University Press, 2005) explores the illogical reality where Americans pay more than $200 billion annually for care that no one likes. I also launched PPECC (Professionals with Personal Experience with Chronic Care), a national organization now 600 members strong. PPECC members have shared their own personal experiences in hopes of raising public awareness and bringing improvements to longterm care.
Working together
Of course, there are countless other resources on long-term care available. Indeed, there is no shortage of information on aging issues; rather, the problem is wading through all the data, advice, and, conflicting information. Physicians are in a unique position to steer patients and their families toward quality resources and good, informed decisions. They are the ones families turn to in these times of crisis. In the coming years, as our population faces an unprecedented era of aging, physicians will become critical in helping elderly Americans achieve effective health care and a good quality of life. They need to be prepared and they need to be willing to take on this task, at least as the first line of defense. Robert L. Kane, MD, is a professor who holds the Minnesota Chair in LongTerm Care and Aging at the University of Minnesota School of Public Health, where he directs the Center on Aging.
Opportunities available in the following specialty:
Olmsted Medical Center, a 150-clinician multi-specialty clinic with 10 outlying branch clinics and a 61 bed hospital, continues to experience significant growth. Olmsted Medical Center provides an excellent opportunity to practice quality medicine in a family oriented atmosphere. The Rochester community provides numerous cultural, educational, and recreational opportunities.
Family Medicine Rochester Northwest Clinic Rochester Southeast Clinic St.Charles Clinic Internal Medicine Southeast Clinic Occupational Medicine Southeast Clinic Dermatology Southeast Clinic
Send CV to: Olmsted Medical Center Administration/Clinician Recruitment 1650 4th Street SE Rochester, MN 55904
Olmsted Medical Center offers a competitive salary and comprehensive benefit package.
email: egarcia@olmmed.org Phone: 507.529.6610 Fax: 507.529.6622 EOE
www.olmstedmedicalcenter.org MAY 2011
MINNESOTA PHYSICIAN
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F E AT U R E
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he tragic events of Sept. 11, 2001, affected virtually every American in some way. One of the most tangible effects on the state of Minnesota has been the evolution of the Minnesota National Guard and its more than 13,000 citizen-soldiers. For 28 days of every month, this part-time force lives and works much like other Minnesota residents. But for two days each month, the National Guard members don their military uniforms and congregate at more than 60 training and community centers located throughout the state. Then these part-time soldiers and airmen perform training and service projects that add value to our Minnesota communities. Moreover, since that fateful day in September 2001, more than 19,000 Minnesota National Guard members have mobilized in support of national missions to more than 33 countries. The Minnesota National Guard ensures full missionreadiness of this citizen-soldier force through a team of profes-
Perspectives of two National Guard physician-officers sionally qualified medical doctors, dentists, physician assistants, registered nurses, health service administrators, and emergency medical technicians. Specifically, the Minnesota Army National Guard (MNARNG) includes 22 physician officer positions to care for more than 11,100 authorized soldiers. Two such physician-officers, Col. Basil Leblanc, MD, and Col. (Retired) Michael Rath, MD, joined the MNARNG force together as board-certified family-medicine physicians more than 20 years ago. Both of these physician-officers have served in a variety of clinical and leadership positions throughout the organization; both served rotations as state
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EEOE OE An A n eequal qual opportunity opportunity employer employer and and provider provider
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MINNESOTA PHYSICIAN MAY 2011
Editor’s note: We asked Cols. Rath and LeBlanc to respond to the following questions in their remarks about their service with the Minnesota Army National Guard: • What are some of the most memorable tours of duty you’ve seen over the past 20 years? • How has the physician-officer’s role changed over your years of service (especially post-9/11)? • What have been the most challenging and/or rewarding aspects of your service? • What would you like to say to Minnesota physicians considering joining the National Guard? Col. (Retired) Michael Rath, MD
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surgeon, the top physicianofficer position in the state. Their perspectives on service as Minnesota Army National Guard physician-officers, especially through the lens of both pre- and post-9/11, offer remarkable accounts of service, contribution, and fulfillment. —Maj. John R. Zillhardt, Minnesota Army National Guard
I joined the MNARNG on June 8, 1988, after recruitment with Capt. Mark Gibson. I had approached him about joining four months earlier, coming from a military tradition in my family that included two brothers in the Army and one brother in the Navy. I retired from the MNARNG on Feb. 28, 2011, with nearly 23 years of service. Over the years, my tours of duty took me to eight countries on two continents. I toured with the Norwegian Troop Exchange in 1996 for 18 days, with cultural exchanges, winter training, and weekends in Bergen and Oslo. Our mentor was an infantry captain who shared stories of
guard duty on the frontier with the Soviet bloc before and after the collapse of the Iron Curtain. I did a NATO tour to Zagreb, Croatia, in 2004 for six days, instructing the Croatian Military Academy on medical topics in preparation for membership in NATO. I was also a guest lecturer to the Croatian Academy of Public Health—the first Westerner to lecture since the Balkan Wars in the early 1990s. That evening there was a symphonic concert and reception by government officials. In 2004, I did an eight-day MNARNG support mission to Kosovo, where our troops were performing a stabilization mission for NATO. This included a tour of operations and travel to Pristina, Kosovo’s capital city. A sector tour revealed the destruction of Serbian villages, churches, and cemeteries during sectarian violence. I did three tours of duty in Iraq. My first tour, beginning in November 2005, was to Kirkuk, where I served for three months as a field surgeon with the 116th Brigade Combat Team (BCT) from Boise, Idaho. My duties included routine sick call and advanced trauma life support when necessary for coalition forces. My second tour was to Tallil, beginning in November 2006; I was there for 7.5 months with the 1/34th BCT from the MNARNG. This tour was (in)famous for the 4.5month extension ordered by President Bush during the “troop surge,” making the MNARNG forces the longest continuously deployed during the Iraq conflict. My duties included staff work as brigade surgeon, travel to other bases to confer with staff from other health facilities, and attending a conference in Baghdad with senior staff, including a conference with then-Army Surgeon General Lt. Gen. Kevin Kiley. I did my third tour to Iraq in April 2009, serving in Basra for 11 months with the 34th Infantry Division from the MNARNG. This tour was highlighted by efforts to rebuild medical infrastructure in Iraq, and included staffing to coordinate medical and nursing eduSERVICE to page 32
DIRECTOR AND CHIEF HEALTH OFFICER Boynton Health Service at the University of Minnesota invites applications and nominations for the position of Director and Chief Health Officer. The Director and Chief Health Officer is a senior leadership position within the Office of Student Affairs at the University of Minnesota. Reporting to the Vice Provost for Student Affairs, the Director is responsible for the day-to-day operation of Boynton Health Service, the assessment and monitoring of campus health issues, the coordination of services with other campus and community organizations, and the development of programs to address the personal and public health issues of the University of Minnesota community. Boynton Health Service is recognized as a national leader in college health and provides ambulatory health care and public health services on the University of Minnesota, Twin Cities Campus. With over 100,000 visits per year, the on-campus clinic is a primary care site for students, faculty, and staff with 34 provider FTEs and a $20+ million operating budget. Our integrated health services include medical, dental, vision, mental health services, a pharmacy, and a range of public health services.
REQUIRED QUALIFICATIONS:
TO APPLY:
A terminal degree (MD, PhD or equivalent) plus at least 5 years extensive progressive administrative and management experience in a complex health care and/or higher education setting, or an equivalent combination of education and experience.
Applications will be accepted through the university’s online employment portal at https://employment.umn.edu/applicants/ Central?quickFind=93500
DESIRED QUALIFICATIONS: • At least 5 years progressive experience in health care management. • Knowledge of successful group practice, reimbursement, financial systems, managed care, clinical affairs and management. • Understand and manage costs, enhance revenue and assist in developing strategic direction for the health service. • Possess a broad business perspective, public speaking and presentation skills. • Considerable knowledge of administrative operations in student health setting, institutional, academic medical and clinical management, and public health. • Experience in working with diverse populations.
• Increasingly responsible leadership experience in health care executive management; some experience in public health management. • Knowledge, experience and public presence to work effectively with internal and external constituencies including students, staff, and other stakeholders, including community, local and state health agencies. • Knowledge, experience and understanding of college health, strategic management practices and experience with self-funded benefit plans. • Significant supervisory experience and the demonstrated ability to work with staff to set goals, to empower and inspire them, and to hold them accountable for results. • Excellent written and oral communication skills. • The ability to work effectively in a layered and complex work environment.
The University of Minnesota is an affirmative action and equal opportunity employer and educator.
Service from page 30 cation with the University of Minnesota. Dr. Dergham Mohammed, an Iraqi-trained anesthesiologist and translator, was very helpful in providing background and guidance. He has since returned to the United States and will be starting a residency in internal medicine in Chicago soon. The role of the physiciansoldier remains much the same as it was pre-9/11: caring for soldiers, assessing medical readiness, advising commanders, evaluating training, and providing technical expertise in the management of servicerelated medical issues. However, the urgency of providing timely services has changed since 9/11. Physicians can now expect U.S. or overseas deployment every two to five years, depending on needs. This has proven an obstacle to recruitment and retention of priorservice physicians, who have been willing to complete retirement requirements for benefits but unwilling to leave private practice for limited duration.
Above, Col. LeBlanc, with schoolchildren in Tallil, Iraq. The original school was replaced by a new one, built with the assistance of the 34th Infantry Division Red Bulls. Below, Col. Rath, holding a birthday box sent to him during a 2007 tour of duty in Tallil. The most challenging aspect of military medical practice is deployments. The uncertainties of these military tours place stresses on a marriage, children, and employers. The
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EssentiaHealth.org/Careers 800.342.1388 ext 63165
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MINNESOTA PHYSICIAN MAY 2011
most rewarding aspect of military medical practice is the good work that is done taking care of soldiersâ&#x20AC;&#x2122; basic and emergent needs when issues arise unexpectedly. The resources
available in a combat zone are formidable, and air evacuation to large military medical centers with specialty care just hours away. A message to Minnesota physicians: I attended medical school at the University of Minnesota during the Vietnam War. I watched the barricades on Washington Avenue from Owre Hall Anatomy Lab, the occupation of Morrill Hall, and some of the demonstrations when not in class. I did not sign up for the Berry Plan (the federal program that had allowed drafted physicians to defer active duty until completion of specialty training), but took my chances and wasnâ&#x20AC;&#x2122;t drafted. I could envision myself performing medical services for soldiers in an unpopular war, and was ready to do so. Questions for physicians: What about the current conflicts postpones your service, or your childrenâ&#x20AC;&#x2122;s service? What is your civic duty, or is this remanded to the few to make sacrifices? SERVICE to page 34
Associate Medical Director
RiverSource Life Insurance Company For the physician who is intrigued by the idea of leveraging their clinical experience in a non-clinical career. Roles & Responsibilities:
• Provide mortality and morbidity risk assessment opinions on case referrals from underwriting. • Interpret electrocardiograms, treadmills, chest x-rays obtained as underwriting requirements. • Interact with underwriters and other insurance professionals within the company • Provide training to underwriters, both on an individual basis and in the classroom setting. • Stay current with latest medical treatments, diagnostic testing • Begin the course work necessary for Board Certification in Insurance Medicine, including LOMA or CLU courses
Education & Experience:
• Doctor of Medicine or Doctor of Osteopathy degree • Current license to practice medicine in good standing • Residency completed; Board Certification in Internal Medicine, Internal Medicine/ Pediatrics, or Family Practice background preferred • Minimum of three years of clinical experience beyond residency • Public speaking experience a plus but not a requirement • Ability to travel
Overview:
The position of Associate Medical Director with RiverSource Life Insurance Company (an Ameriprise Financial company) provides a singular opportunity for primary care physicians who enjoy the intellectual aspects of medicine, would like a challenging and stimulating career but are interested in leveraging their clinical skills in a non-clinical career. This unique position reports to the Chief Medical Director and provides on the job mentoring to help facilitate the transformation of clinical skills into those necessary for the practice of Insurance Medicine. It provides the clinician an opportunity to do so in a gradual fashion, allowing the practicing physician to work on a part time basis while building their new skill set. Insurance Medicine requires knowledge in the fundamentals of mortality and morbidity risk selection, the ability to analyze how medical disorders and diseases impact risk selection, as well as superior skills in the interpretation of electrocardiogram and stress tests. Other areas developed through on-the-job training and self-study are product design, life insurance company operations, and reinsurance functions. In the US, there are about 500 doctors practicing Insurance Medicine in the life and disability fields. Beginning salaries vary and corporate benefit packages can add 25-30% or more to total compensation. While a career in Insurance Medicine does not involve direct patient care, it provides an intellectually stimulating job where a physician is able to evaluate the risk presented by a spectrum of unusual diseases and disorders that they may never have had the opportunity to see in practice. Busy clinicians may not have the time to read and research a potential disease in a patient; in this job it is what we do every day while enjoying the benefits of a less stressful lifestyle without evening, holiday and weekend call. The Associate Medical Director position is initially a part time position consisting of one or two half-days per week, with the potential of full time employment and expansion of responsibilities for those individuals who are interested and excel. The ultimate goal is to obtain Board Certification in Insurance Medicine, a field recognized by the AMA. The coursework required to obtain certification is fully supported by RiverSource Life Insurance Company.
Take the next step Call or email Lisa Arnold (612) 678.6734 lisa.f.arnold@ampf.com
Brokerage, investment and financial advisory services are made available through Ameriprise Financial Services, Inc. Member FINRA and SIPC. Some products and services may not be available in all jurisdictions or to all clients. Ameriprise Financial Services, Inc., is an Equal Opportunity Employer. © 2011 Ameriprise Financial, Inc. All rights reserved.
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I believe we all incur the obligation to serve, whether in our community, our church, the military, or any number of other worthwhile organizations.
Service from page 32 We have had one civilian physician join the MNARNG since 9/11. The remainder were transfers, medical students, or medical residents receiving tuition assistance from the Army or the state of Minnesota in exchange for service, and all fully completed training before any requirements for deployment. I’ve seen other parts of the world, and we are very fortunate. Please share these blessings of freedom with your time and energy. That would be thanks enough for me. Col. Basil LeBlanc, MD
Following residency, I moved to New Ulm, Minn., where they had an opening in the 125th Field Artillery unit. I had always wanted to serve and saw this as an opportunity to do so. I originally agreed to do it for one year to see how I liked it. That was 23 years ago. Among the most memorable tours of duties were those in Iraq in 2006 and 2008.
Medical care in Iraq involved two basic services: ongoing health care concerns (i.e., management of chronic medical issues and everyday problems) and the preparation for and treatment of trauma care. There was a huge change between the ’06 and ’08 tours in the amount of trauma we saw. In 2006, the major trauma center in Balad managed an average of 16 major trauma cases a day. In 2008 that number had dropped to one a week. In my last tour I was the aviation brigade flight surgeon, running the aviation medical clinic. Our main job was to see to the health of the pilots, air crews, and supporting staff. I was also responsible for keeping the commander abreast of emerging health issues, in addition to maintaining the
medical preparedness of the emergency response. A major challenge of the deployments is that they were very stressful on my practice in general and my partner, Dr. Phil Bachman, particularly. He had to see all of his patients and mine for the Iraq deployments, which were five months on average during both 2005 and 2008. Accordingly, I now have full-time employment at the St. Cloud VA Medical Center. It has been my privilege to serve with thousands of professional, well-trained, committed National Guard personnel. One of the major changes that occurred in the last half of my career, post-9/11, was the heavy involvement of the National Guard in all duties. Actually, 70 percent of all Army medical
NEW POSITIONS:
Come home. Where organizational strength lies in the diversity of people who call SANFORD HEALTH – home. Sanford Health – Fargo Region is redefining health care. Serving northwestern Minnesota and eastern North Dakota, we offer innovative technology, support of a multi-specialty organization, and dependable colleagues. Excellent practice opportunities exist in family-oriented communities that offer year-round outdoor activities, cultural events, and superior education districts that will allow you to balance your work & life. Our employment model features competitive salaries, a comprehensive benefits package, paid malpractice insurance, and a generous relocation allowance. Contact: Kathryn Norby, MHA Physician Recruiter Phone: (701) 280-4851 Kathryn.Norby@sanfordhealth.org
assets are in the Guard, so we were the main contributors to the war effort. As a result, the current Guard is the most vital, well trained, and experienced since WWII, much to the benefit of the country in general and Minnesota specifically. The relationships formed while deployed are some of the richest and most rewarding. It is a fellowship that is hard to duplicate or explain. Quoting from the Bible, President John F. Kennedy once said, “Of those to whom much is given, much is required.” I believe we were all fortunate to have been born and raised in America. In return, I believe we all incur the obligation to serve, whether in our community, our church, the military, or any number of other worthwhile organizations. As our country, for better or worse, has elected to support democracy and protect those less fortunate than ourselves, the military continues to need willing medical providers to support those missions.
Cardiology Dermatology ENT Emergency Medicine Family Medicine Gastroenterology Hospitalists Internal Medicine Neurology Occupational Medicine Oncology Orthopedic Surgery Pediatric Specialties Psychiatry Pulmonology (Sleep) Rheumatology Urology
Family Practice Urgent Care Dynamic, independent 3 location, single-specialty practice in northwest Minneapolis suburbs is seeking additional associates for its Rogers site and has Full Time/ Part Time shifts in the Crystal and Rogers Urgent Care. • • • • •
Partnership opportunity after 2 years Competitive salary with incentives Excellent benefits, 401k/employer paid pension Practice at one site/one hospital Physician-owned
Please contact or fax CV to: Joel Sagedahl, M.D. 1495 Highway 101 North, Plymouth, MN 55447 763-504-6600 • Fax 763-504-6622
Visit our website at www.NWFPC.com
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MINNESOTA PHYSICIAN MAY 2011
Come to the Alexandria Lakes Area... • Dermatology • Emergency Medicine • Family Medicine • Internal Medicine • Pediatrics Broadway Medical Center is a rapidly growing, independent, physician-owned multi-specialty group practice with over 35 caregivers in 10 different medical specialties. We are located in Alexandria, MN; a beautiful and growing community with tremendous recreational opportunities. Welcome! Contact Daniel J. Jones, MHA at Broadway Medical Center 1527 Broadway Street, Alexandria, MN 56308 (320) 762-6841 or e-mail djjones@broadwaymedicalcenter.com
Practice Well. Live Well.
Lake Region Healthcare is located in a magnificent, rural, and family-friendly setting in Minnesota lakes country where we aim to be the state’s preeminent regional health care partner. Our award winning patient care and uncommon medical specialties set us apart from other regional health care groups. Lake Region’s physicians and their families also enjoy an unmatched quality of professional and personal life. Current opportunities including competitive salary and benefit packages available for BE/BC physicians are: • Internal Medicine • Internal Medicine • Pediatrics • Pediatrics
• Family Medicine • Urology • Family Medicine • General Surgery • Psychiatrist • General Surgery
For more information contact
1527 Broadway Street, Alexandria, MN 56308
To learn more about our practice, please visit our website at www.broadwaymedicalcenter.com
Sioux Falls VA Medical Center “A Hospital for Heroes” Working with and for America’s Veterans is a privilege and we pride ourselves on the quality of care we provide. In return for your commitment to quality health care for our nation’s Veterans, the VA offers an incomparable benefits package. They all come together at the Sioux Falls VA Medical Center.
• Pulmonologist
Barb Miller, Physician Recruiter bjmiller@lrhc.org • (218) 736-8227
712 Cascade St. S. Fergus Falls, MN 736-8000 | (800) 439-6424
Lake Region Healthcare is an Equal Opportunity Employer. EOE
Physician-owned multi-specialty group is seeking additional BC/BE pediatricians to meet an increasing demand. Join 7 others in a firmly established practice with a huge built-in referral base. A Call rotation of 1:8 and greater with the addition of new providers is supported by a 24-hour, nurse triage phone-line. You'll see 20-30 outpatients/day, and an average of 1-3 inpatients/day. Service lines that support our group include our own lab, sleep center, nuclear medicine, Medicare Certified endoscopic center and radiology department with a 128 slice CT and co-ownership in an ambulatory surgery center. Opportunity highlights: • Market competitive compensation guarantee to start, followed by RVU based production income thereafter • Fully integrated Allscripts electronic medical record • 35 PTO / CME Days + paid holidays; generous CME allowance
• Orthopedic Surgeon
• Practice connects to a regional, 270 bed, not-for-profit Mayo-affiliated hospital, Level 3 Trauma Center
• Oncologist
• State university with 14k students; 150 undergraduate / 100 graduate / 4 PhD programs; 1800 Faculty / Staff • Named one of America’s Promise “100 of the Best Places for Youth” • Essential retail in the community; Target, Best Buy, Lowe’s, Sears, Old Navy
To be a part of our proud tradition, contact:
Human Resources Mgmt. Service P O Box 5046 Sioux Falls SD 57117 605-333-6852
www.siouxfalls.va.gov
• Affordable housing: 4-bed, 4.5 bath, 3,572 Sq/Ft. home - $264,900 • 50 miles of local, paved trails / hundreds of acres of community parks Contact Dennis Davito, Director of Physician Placement, Mankato Clinic, 1230 East Main Street, P.O. Box 8674, Mankato, MN, 56002-8674; phone: 507-389-8654; fax: 507-625-4353; email: ddavito@mankato-clinic.com
www.mankato-clinic.com
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MINNESOTA PHYSICIAN
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TABLE 2. The roles of allied health professionals in the management of Huntington’s disease Team member
Early to middle stages
Middle to late stages
Physical therapy
Exercise program, gait assessment
Recommend assistive devices for gait
Occupational therapy
Workplace assessment, home safety
Special seating for chorea; adapt the bed, mattress, bedroom; padding of joints, helmets; equipment for eating; home safety
Speech therapy
Proactive evaluation of swallow; repeated assessment as dysphagia develops; communication evaluation
Augmentative communication device (rarely) or, more commonly, a simple word board; dysphagia evaluation
Dietitian
Healthy eating; high-calorie foods and supplements
Assist with texture changes; calorie counts and recommendations for supplements or tube feedings
Psychologist
Support and counseling for the patient, spouse, and family; involved in predictive testing of at-risk family members
Counseling for family as disease progresses
Neuropsychologist
Neuropsychological assessment; assist with competency evaluation, counsel families in managing dementia
Repeat assessments as needed
Social worker
Crisis management; disability, insurance, legal issues, financial issues, family issues, in-home care, day programs, out-of-home placement; support groups
Crisis management, out-of-home placement, family issues
Genetic counselor
Genetic counseling for newly diagnosed patients and families; predictive and prenatal testing
Research team
Invite participation in clinical and observational research trials
Lay organization
Connect patients with the local and national Huntington’s Disease Society of America support, educational, and advocacy activities
Help and support caregivers—and use their experience and knowledge to help newer families in the community
Primary care physician
Attend to primary care needs (immunizations, surveillance tests, managing other health problems)
Manage medical complications of late-stage HD (infections, injuries, etc.)
Dentist
Annual dental care (particularly important because of the dysphagia) Assist patient and family during the last weeks/months before death
Hospice team
Huntington’s from page 25 fundraising events. This year, the annual conference of the Huntington’s Disease Society
of America will be held in Minneapolis June 24–26; more information about the conference is at www.hdsa.org/nationalconvention/convention.html.
Look for the friendly doctor in a MN based physician staffing service ...
Physicians: • Let us do your scheduling & credentialing • Paid Malpractice • Physician Friendly • Choose where and when you want to work • Competitve Rates • Courteous Staff
Clients: • Prevent loss of revenue • BC/BE physicians • Competitive rates • Quality coverage • Malpractice coverage paid by us
P-763-682-5906/F-763-684-0243 michelle@whitesellmedstaff.com www.whitesellmedstaff.com
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MINNESOTA PHYSICIAN MAY 2011
The future
Clinical research in HD has gathered steam over the last decade. Large-scale clinical trials conducted by the Huntington Study Group (www.huntingtonstudy-group.org), a consortium of HD clinical researchers in the United States and Canada, have studied remacemide, coenzyme Q10, riluzole, tetrabenazine, ethyleicosopentanoic acid (Ethyl-EPA), minocycline, and phenylbutyrate, and led to FDA approval for tetrabenazine. Current studies are looking at the possible neuroprotective effects of creatine, and high doses of coenzyme Q10, as well as the symptomatic effects of dimebon and pridopidine. As laboratory scientists use genetic animal models of HD to elucidate the processes that lead to neuronal degeneration, translational scientists are developing therapies based on those processes. Both the Huntington Disease Society of America (HDSA) and an international foundation, CHDI Foundation, Inc., promote the international collaborative efforts needed to bring therapies from the laboratory to the clinic. One novel therapy currently under development is “gene
silencing”—a way of “turning off” the abnormal huntingtin gene so that it does not produce the abnormal huntingtin protein. If this therapy worked perfectly and could be delivered to the correct cells at the right time, it would represent a cure for HD. Currently, the treatment is not perfect—it is difficult to deliver, does not silence the abnormal gene completely, and may affect other genes as well— but the concept is exciting to researchers studying HD and many other diseases, and provides a real reason for families to have hope. With thoughtful care from the medical providers of today, patients and their families in Minnesota are able to use their energy and creativity to improve the lives of others in the HD community, and to support researchers in their quest to find better answers for the future. Martha Nance, MD, is director of the Huntington’s Disease Society of America Center of Excellence at Hennepin County Medical Center, Minneapolis; medical director at Struthers Parkinson’s Center, Golden Valley; and an adjunct professor in the Department of Neurology, University of Minnesota Medical School, Minneapolis.
Growing multi-specialty group practice in Northern Minnesota is looking for a BC/BE Family Practice Physician, Internal Medicine Physician, Emergency Room Physician, OB/GYN Physician, Urologist as well as an Orthopaedic Surgeon. Join an existing group practice and take over existing practices from departing physicians. Grand Itasca Clinic & Hospital in Grand Rapids, Minnesota has recently opened a new state of the art clinic & hospital. Excellent salary guarantee with outstanding income potential, full benefits and sign-on bonus. Community located in the beautiful northern Minnesota lakes area.
Contact: Gail Anderson (218) 999-1447 gail.anderson@granditasca.org.
St. Cloud VA Medical Center
The perfect match of career and lifestyle. Affiliated Community Medical Centers is a physician owned multi-specialty group with 11 affiliate sites located in western and southwestern Minnesota. ACMC is the perfect match for healthcare providers who are looking for an exceptional practice opportunity and a high quality of life. Current opportunities available for BE/BC physicians in the following specialties: • Family Medicine • General Surgery • Geriatrician/ Outpatient Internal Medicine • Hospitalist • Infectious Disease
• Internal Medicine • Oncology • Orthopedic Surgery • Pain Management • Psychiatry
• Pediatrics • Pulmonary/ Critical Care • Radiation Oncology • Rheumatology
For additional information, please contact: Kari Bredberg, Physician Recruitment karib@acmc.com, 320-231-6366 Julayne Mayer, Physician Recruitment mayerj@acmc.com, 320-231-5052 www.acmc.com
JOIN/BUY IN
is accepting applications for the following full or part-time positions:
• Internal Medicine
• Geriatrician
(Nursing Home— St. Cloud, Brainerd)
(Nursing Home—St. Cloud)
• Hematology/Oncology
• Family Practice
(St. Cloud)
(St. Cloud)
• Neurology (St. Cloud)
• Psychiatrist (St. Cloud) • ENT
(St. Cloud)
• Dermatology (St. Cloud) • Disability Examiner (IM or FP) (St. Cloud)
US Citizenship required or candidates must have proper authorization to work in the US. J-1 candidates are now being accepted for the Hematology/Oncology positions. Physician applicants should be BC/BE. Applicant(s) selected for a position may be eligible for an award up to the maximum limitation under the provision of the Education Debt Reduction Program. Possible relocation bonus. EEO Employer.
the Leading Minneapolis Anti-Aging and Preventive Medicine Clinic Anti-Aging Medicine is the fastest growing field of medicine today. You will be coached by a leading Anti-Aging Specialist in the country in a truly satisfying practice. • Improve vigor, vitality, and • Good earning potential looks of your patients • Expansion opportunities • Delay diseases of aging • NO evenings and weekends
Innovative Directions in Health
Physicians with background in internal medicine, family medicine and emergency medicine preferred.
Edina, MN
Excellent benefit package including: Favorable lifestyle Competitive salary 26 days vacation 13 days sick leave CME days Liability insurance
Khalid Mahmud, MD, FACP
Interested applicants can mail or email your CV to VAMC Sharon Schmitz (Sharon.schmitz@va.gov) 4801 Veterans Drive, St. Cloud, MN 56303 Or fax: 320-255-6436 or Telephone: 320-252-1670, extension 6618
To learn more about our practice, visit www.idinhealth.com
Contact Lisa Rhodes at (952) 922-2345 or lisa@idinhealth.com
MAY 2011
MINNESOTA PHYSICIAN
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The Center for Orphan Drug Research Orphan drugs from page 21 CODR, in partnership with the University of Minnesota Blood and Marrow Transplant Program, is studying NAC mechanism of action and clinical pharmacology to optimize therapy. Our long-term goal is to develop safer, more effective therapies for CCALD, including the use of NAC as preventive therapy in children with earlystage disease. Intravenous topiramate for neuroprotection and seizure control in neonates. Seizures in newborns are often caused by brain injury at birth. The injury and the resulting seizures combine to cause grave neurological sequelae, including impaired cognition and further brain injury. Management of neonatal seizures involves administering high doses of phenobarbital or phenytoin. Both drugs have serious adverse effects and, in the only controlled trial evaluating their efficacy, were found to be effective in less than 50 percent of babies. Topiramate is an FDAapproved antiepileptic drug prescribed as either a tablet or a
The University of Minnesota’s Center for Orphan Drug Research provides the following services: • Clinical pharmacology and clinical trials. Center staff has expertise in the design and execution of Phase I-IV studies. Using the relatively new discipline of pharmacometrics, staff generate and use pharmacokinetics and pharmacodynamics data to construct models to define the relationship among doses or concentrations, patient factors, disease, and drug responses, as well as to determine optimal, efficient study designs. • Bioanalytical laboratory. The center operates a bioanalytical laboratory equipped with high-performance liquid chromatography, liquid chromatography/mass spectrometry, and gas liquid chromatography systems. It has the capability of developing assays for drugs and metabolites. • Drug design, synthesis, and formulation. The center, through its collaboration with other university centers, is able to assist investigators with drug design, molecular modifications, synthesis, and formulation. • Orphan drug regulatory support. Center staff have expertise in preparing and submitting orphan product designation applications to the FDA. sprinkle capsule to treat older children and adults. Studies in newborn laboratory animals suggest that intravenous topiramate holds the promise of controlling seizures and providing neuroprotection in newborn babies. CODR, with funding from the FDA Orphan Drug Grants Program and the Epilepsy
CME Conferences 2011
Research Foundation, is undertaking development of intravenous topiramate. We have already completed safety and pharmacokinetic studies in adult volunteers and patients on oral topiramate. The next phase of this project will be completion of toxicity studies in newborn laboratory animals, followed by a pharmacokinetic and safety
study in children taking oral topiramate, and, finally, a randomized, controlled clinical trial in neonates. A safer, more effective treatment for neonatal seizures combined with the potential for neuroprotection would represent a significant advance in the care of babies with brain injury. Addressing unmet needs
The Center for Orphan Drug Research offers an innovative approach to developing new therapies for rare conditions that the pharmaceutical industry may ignore. In partnership with government, foundations, and smaller companies, the center is undertaking research that addresses unmet needs of patients and families affected by rare disorders who heretofore have had few options. James Cloyd, PharmD, is the director of the Center for Orphan Drug Research, a professor of experimental and clinical phamacology, and the Lawrence C. Weaver Endowed Chair–Orphan Drug Development in the College of Pharmacy at the University of Minnesota, Minneapolis.
Pediatric Fundamental Critical Care Support May 19 - 20, 2011
Fundamental Critical Care Support July 14 - 15 and October 13 - 14, 2011
29th Annual Strategies in Primary Care Medicine September 22 - 23, 2011
Pediatric Conference • Urgent Care Focus: October 28, 2011 • Pediatric Update: October 29, 2011
12th Annual Women’s Health Conference November 4, 2011
Emergency Medicine and Trauma Update • Beyond the Golden Hour November 17, 2011
Otolaryngology Conference November 18, 2011 Education that measurably improves patient care.
healthpartnersIME.com 952-883-6225
38
MINNESOTA PHYSICIAN MAY 2011
33rd Annual Cardiovascular Conference December 1 - 2, 2011
ON THE MEDICAL CAMPUS IN CROSBY
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