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PHYSICIAN SPOTLIGHT PAGE 3
Alfredo Fernandez, MD ON ROUNDS
5 Minutes with Bruce Rueben
Florida Hospital Association leader discusses myriad changes, burdens impacting the state’s healthcare industry ... 7
The Birth of BPAN
International team identifies new neurodegenerative disease. ... 9
HMA Mates
Courtship comes to fruition for Bayfront, HMA and the University of Florida Bayfront Medical Center Trauma Exterior
By LyNNE JETER
ST. PETERSBURG – Last month, the St. Petersburg City Council took a hard stand on a local sports franchise issue, yet softened for a controversial one impacting indigent care. Council members rejected a proposal 4-4 to allow the Tampa Bay Rays to consider relocating in the city, yet approved 7-1 the proposed $162 million sale of the city’s primary charity care and trauma center to publicly held Health Management Association (NYSE: HMA), the Naples-based hospital management company that historically provides low levels of charity care. The 480-bed Bayfront Medical Center, a non-profit that faced economic
hardships as a stand-alone hospital, will shift to for-profit status with HMA holding an 80 percent share. “There’s a lot of talk of non-profit and for profit,” noted council member Leslie Curran. “Is nonprofit better for a hospital that delivers charity care? Will the charity care still be delivered? I feel comfortable that’s the case. It’s going to be the same policy that’s in place now.” The University of Florida will join in the deal under ShandsHealthCare. Officials declined to disclose the financial arrangements. Also, when the deal is finalized, Bayfront CEO Sue Brody will resign. HMA plans to pump $100 million into the hospital through 2018, and funnel net (CONTINUED ON PAGE 4)
Breaking New Ground Moffitt takes first step toward transforming McKinley campus to outpatient service hub; CEO discusses high profile projects, long term plans By LyNNE JETER
Last month, the H. Lee Moffitt Cancer Center & Research Institute expanded its footprint in Tampa with the groundbreaking for a new $74.2 million McKinley outpatient facility. The first phase of expanding the McKinley campus, located less than a mile from Moffitt’s main campus and home to spinoff M2Gen, will include the construction of a 200,000-square-foot, eight-story outpatient facility slated for completion next year. The new center, scheduled to open in February 2015, (CONTINUED ON PAGE 4)
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PhysicianSpotlight
Alfredo Fernandez, MD Surgeon and founder of Tampa Bariatrics By JEFF WEBB
TAMPA - To say Alfredo Fernandez aimed high would be an understatement of astronomical proportions. When he was in high school and decided to study medicine, his destination was Mars. “I knew I would study science. I was always fascinated with space travel. I remember watching the first moon landing on television and I thought ‘If they are going to go on really long space flights, they’re going to need a doctor on board. You can train an astronaut to be a geologist and study rocks, but you can’t train someone to take care of a sick person in space,’” he remembered. So, after earning a bachelor’s of science degree in chemistry at his hometown University of Miami, “I went to medical school for only that reason ... crazy,” he said. He eventually let go of his dream of space travel, but it was at the Universidad Nacional Pedro Henriquez Urena in the Dominican Republic where he decided he would become a surgeon. Fernandez said he was “influenced by my anatomy professor in medical school,” a surgeon who “took me under his wing to assist frequently. I knew then surgery was my choice for specialty.” His time in Santo Domingo was eyeopening from a cultural perspective. Even though, as an emigrant from Cuba, he spoke Spanish, “going to medical school in a foreign country” was one of the greatest challenges of his life, he said. “It was a culture shock. Many of the simple everyday conveniences we take for granted here just didn’t exist there. All Americans should be forced to live outside the U.S. (for a while) to really appreciate our country,” he said. Returning to the U.S. for his general surgery internship and residency, Fernandez spent 1981-1986 at the Alton Oschner Medical Foundation in New Orleans, La., where he finished with top honors. He thought about moving back to Miami, “but the city had changed so dramatically it wasn’t appealing,” he said. A colleague from his residency was a gynecologist in Tampa, a family friend here was an ENT physician, and a general surgeon who also was Cuban-American, convinced him to move. “Those were the days when you could just move somewhere, hang out your shingle and start seeing patients solo. That’s almost nonexistent now,” he said. That was 27 years ago and, although about 40 percent of his surgeries are general – gall bladders, appendectomies, colons, hernias, anti-reflux procedures – his subspecialty of bariatrics and weight loss surgery is why Fernandez is well-known. “Bariatrics was my personal challenge. Ten years ago when I started doing weight medicalnews
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loss surgery, it was the most challenging general surgery procedure and not for the weak-skilled. Still today, successful weight loss surgeons are highly skilled and advanced laparoscopists,” he explained. Fernandez’ office is right next door to Town and Country Hospital, where “we first formed the laparoscopic bariatric center in 1988. Turmoil between doctors and administrators resulted in that Center of Excellence shutting down a few years ago, but “new leadership is righting mistakes and errors,” said Fernandez, who is bariatrics medical director there, as well as at Florida Hospital Carrollwood and Brandon Regional Hospital.
GENERAL
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“I’ve always considered (Town and County) my hospital, so this is like coming home,” Fernandez said. “Hospital leadership is doing what it takes to make things right and that is a winning combination” for a partnership, he said. Tampa Bariatrics is a full-service practice that integrates all elements of physical and mental care that are key to patients’ success, Fernandez said. While he usually spends four out of five days a week in operating rooms, he said he always has two physician assistants in his clinic who are students from Barry University in Tampa. Other members of his team include a nutritionist, a psychologist and a husband-wife team who are support group coordinators. “Bariatrics is predicated on making lifestyle changes,” Fernandez said. “That lifestyle change involves a tremendous amount of education about how (patients) need to eat and addressing the psychological issues” that contribute to obesity, he said. “No one gets to be 350 pounds without having some psychological issues. We address all that because, if you don’t, eventually the patient fails. This is all about making lifestyle changes after the surgery.” “We do seminars and support groups. It’s almost like an AA (Alcoholics Anonymous) program. The people who do best
are the people who stay in the program and follow through,” he said, noting there are no charges for these sessions. “We have a tremendous support structure. Patients who have succeeded are (inspirational) and a big part of that success.” Speaking of success, Fernandez said he owes a great deal of his to Martha Rivera-Fernandez, “the most special person in my life, my business manager, friend and lover.” He met Martha when he was observing a surgery at Hialeah Hospital, one of the premier bariatrics program in the Miami-Dade area. “She was the operating room director and it was love at first sight,” Fernandez said. “The rest is history” and “icing on the cake,” he said of their 10-year marriage. Fernandez has “five kids from prior engagements,” ages 15-28, he said, and the oldest is in medical school in the Dominican Republic. “He’s going to be a surgeon. I hope he goes into bariatrics. It would be ideal because (the practice in Tampa) all set up, but this is really special stuff. You have to have the passion for it,” he said. Fernandez’ uniform when he’s not wearing surgical scrubs is a T-shirt and flip-flops, which he dons while on his 37foot Intrepid motorboat. He and Martha take it from the marina where they live in (CONTINUED ON PAGE 4)
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Breaking New Ground, continued from page 1 will include clinics with imaging services moved from Moffitt Cancer Center Screening and Prevention’s location on Fowler Avenue; an ambulatory surgery center with four new ambulatory surgery suites to serve patients with cancers including breast, melanoma, head and neck and sarcoma; medical offices; administrative facilities; research labs; and dining areas. The project, which calls for $54.2 million to be spent on the building and parking garage and the balance on new equipment, was made possible by a 30acre land donation from the city and Hillsborough County, and financial assistance from state lawmakers. Rep. J.W. Grant (R-Tampa), a Tampa attorney, and Sen. Ronda Storms (R-Valrico), who recently resigned from the Florida Legislature to challenge incumbent Rob Turner for Hillsborough County property appraiser, championed the effort to raise the cigarette tax allocation from 1.75 percent to 2.75 percent in the 2012 legislative session, allowing Moffitt to secure the funds to build on the McKinley campus. “Our cigarette tax allocation was at one time 4.8 percent, and had been whittled down through the years to 1.75 percent,” said Alan F. List, MD, Moffitt president and CEO. F. List, “Pushing it back up … AlanMD was critical to begin our expansion project on that campus.” The initial expansion will allow Moffitt to add more operating rooms to the main campus and expand inpatient services. The multi-phase expansion will eventually move most outpatient services to the McKinley campus, easing traffic flow onto the university campus, said List. “Even the research lab can move
there so our existing campus at USF will provide mainly inpatient activities,” he said. “It’s good for us to consolidate our outpatient and research efforts (at the McKinley campus).” The timeline for the second phase depends on funding. Moffitt plans to spearhead a comprehensive capital campaign, earmarked primarily for research efforts.
HMA Mates,
PhysicianSpotlight
continued from page 1 proceeds of approximately $150 million to the new Bayfront HERO (Health, Education and Research Organization) Foundation. Bayfront HERO will invest in a 20 percent ownership stake in the partnership, and will invest in research and education in partnership with Bayfront Health System, Johns Hopkins/All Children’s Healthcare and other healthcare and academic partners. “We’ve been very pleased with the collaborative process and the hard work everyone’s doing to make this partnership a reality,” said HMA CEO Gary D. Newsome. “We’re committed to high quality care and to positioning Bayfront as a flagship tertiary hospital for the entire region.” Upon transaction completion, HMA subsidiaries will operate 71 hospitals, with 11,000 licensed beds, in non-urban communities across 15 states.
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Inside the Walls
“Last March, the number of people enrolled in the total cancer care protocol at Moffitt was more than 85,000,” he said. “The collected tumor specimens banked was over 35,000, with gene molecular profiling done on more than 16,000 patients. Now the new technology is gene sequencing. Probably 8,000 have had limited gene sequencing performed. We’ve signed several contracts in the last several months with big pharmaceutical companies that are looking at interrogating data we have on gene sequencing for biomarker discovery.” Molecular diagnostics is another focus, said List. “On the third floor of M2Gen last year (on the McKinley campus), we moved our molecular diagnostics lab to allow us to test for gene mutations that are going to direct therapy,” he said. “Another focus is our clinical pathways … how to manage patients at Moffitt based on what we know about their specific tumor from a molecular mutation perspective. This laboratory will support anyone in the region with sophisticated molecular diagnostics that will help guide them in precise decision-making for therapy for patients with cancer.” Technology for interrogating malignancies and studying DNA continues to grow, said List. “The human genome was finally sequenced around 2000, and it took about
Fernandez, MD, continued from page 3 Tampa, to the Bahamas, via Key West and Miami, every Spring. “May and June are slow months for us, so we take advantage of that time,” he said. The couple dock the boat in Miami for about a month and fly back and forth to Tampa, working three or four days a week and spending a series of long weekends in Miami. Fernandez loves to fish, especially trolling in about 800-feet of water four or five miles out from Key West. “We target dolphin, tuna and wahoo. We catch a LOT,” he said, uncharacteristically bragging a little. These pastimes “would be meaningless without the company of my wife,” said Fernandez, who is looking forward to sharing the couple’s love of travel with trips to the Great Wall of China, Australia and his native Cuba. It’s not travel on an interplanetary scale, but Fernandez is still aiming high.
Legislative Status The proposed Cancer Treatment Fairness Act is in the hopper with the Florida Legislature, thanks to sponsors that include Rep. J.W. Grant (R-Tampa), a Tampa attorney who represents District 64, parts of Pinellas and Hillsborough counties, and rallied the increase of the cigarette tax allocation last year. Now in the Health Innovation Subcommittee, the bill requires individual or group insurance policies or health maintenance contracts to provide coverage for orally administered cancer treatment medications. It also prohibits insurers, health maintenance organizations, and other entities from engaging in specified actions to avoid compliance. “The whole intent is to benefit patients,” said Alan F. List, MD, Moffitt president and CEO. “These days, more and more cancer treatment drugs are oral, as opposed to intravenous. Many intravenous treatments have oral analogs. What’s happened is that insurance will commonly cover the intravenous administration of cancer drugs, but they may not give full or adequate coverage of the oral forms. Those cancer patients without coverage can’t pay for it, and that’s not fair. There should be equal weight on providing insurance coverage for IV and orally administered drugs for cancer.”
13 years and billions of dollars from NIH to do it,” he said. “Now where it used to take bioinformatics people weeks and weeks to analyze data from that, they’re developing software that can sequence the entire genome, or Xomes, in a matter of hours.” List’s own research lab focusing on myelodysplastic syndrome (MDS) has seen increased activity as a result of media attention on Good Morning, America’s Robin Roberts, following her diagnosis of MDS last year, bone marrow transplant, and return to work last month. “We’re very excited about what’s going on,” he said. “In 2005, we first developed the drug, Revlimid®, for a relatively rare subtype of MDS with a specific chromosome 5 abnormality known as deletion 5q abnormality. We’ve learned a lot more about how the drug works, what the targets are, and how mechanisms of resistance can occur. We presented data at the last American Society of Hematology meeting in December about strategies to overcome or prevent resistance. That was exciting.” Even more thrilling, said List, is learning more about how MDS develops. “More information is pointing to abnormalities of innate immunity,” he said. “Sustained activation can actually lead to a very inflammatory state in the bone marrow that can promote the development of MDS. By understanding that biology, it gives us the opportunity to develop new therapeutics that can be used early on, that can actually interrupt that process so that MDS doesn’t develop and become an autonomous malignancy. It opens up the opportunity for prevention; that’s what we’re focusing on now.” Moffitt investigators are also rolling out cutting-edge clinical trials for improved outcomes, especially concerning malignant melanoma. “Once it spreads and becomes metastatic, melanoma becomes a deadly disease,” said List. “Going back a few years ago, we had no FDA-approved treatments specifically that were meaningful in making a difference to patients. In the last two years, we’ve had
two drugs approved. We were very instrumental in developing and understanding how the new drugs work, who should receive them, and how to prevent resistance. All that research began here with Drs. Jeff Weber and Keiran Smalley. We found that over 40 percent of tumors with metastatic melanoma have a mutation in a specific gene called BRAF. Dr. Weber was instrumental in leading some of those trials that eventually led to the development of the first FDA-approved inhibitor of BRAF for the treatment of patients with metastatic melanoma. It’s extended survival for those patients from a matter of months to more than a year.” Importantly, Smalley discovered why patients with metastatic melanoma develop resistance to the drug. “He found that those tumors, with time, could start to signal down a different pathway to compensate for the inhibition of BRAF, and the team identified a second drug to block that compensatory pathway,” he explained. “Dr. Lever took it into a clinical trial using a combination of two drugs. It’s good to know those discoveries are being driven by some of our own investigators at Moffitt.”
Making the Proper Diagnosis The success rate of treating cancer involves using the right treatment for the right diagnosis from the very beginning of the disease discovery, said Alan F. List, MD, Moffitt president and CEO. “Plenty of studies have been done, and it’s been our experience too … that the initial cancer diagnosis is incorrect one of three times,” he said. “It may be cancer, but it’s an incorrect type of cancer, and therefore the cancer treatment will be incorrect. I encourage physicians with patients with cancer, particularly those with rare tumors, to make sure it’s reviewed at a center with experts who only see those types of tumors to make sure the diagnosis is correct for the best chance of success.”
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Closing the Gap in Florida’s Colorectal Cancer Screening Rates By ALLISON BARNES-CARTER
If you have patients who are 50-plus, here’s a staggering fact: 60 percent of deaths from colorectal cancer could be prevented if everyone age 50 and older received regular screening. Since March is Colorectal Cancer Awareness Month, it’s a good time to call attention to the facts. Screening, when coupled with changing modifiable risk factors, is a first line of defense in colorectal cancer prevention. Some research shows that as many as 70 percent of colorectal cancer cases could be prevented with lifestyle changes including healthy eating, physical activity, and avoiding tobacco. Furthermore, adults who increase their physical activity, either exercising longer or more often, can reduce their risk of developing colorectal cancer by 30 to 40 percent. With such powerful supporting evidence, convincing patients to get screened and make healthy lifestyle changes should be easy. But not so – colorectal cancer remains the second leading cause of cancer deaths in the state and cancer is the leading cause of all deaths. The Florida Colorectal Cancer Con-
trol Program is working to change the statistics through the use of regional program navigators strategically located in Miami, Tampa, and Gainesville. These navigators are a key component in raising colorectal cancer awareness and screening rates across the state.
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With such powerful supporting evidence, convincing patients to get screened and make healthy lifestyle changes should be easy. But not so – colorectal cancer remains the second leading cause of cancer deaths in the state and cancer is the leading cause of all deaths.
Navigating Change
A key link in the chain of public health, program navigators teach patients about evidence-based guidelines, encourage patient screening adherence, and work with providers to link those patients to needed resources. In the Tampa Bay area, a program navigator worked with more than 30 primary care clinics to provide colorectal cancer screening services for patients and also provided colorectal cancer education, including fecal immunochemical testing (FIT), to primary care physicians around the state. Physicians and other healthcare professionals along with all of the hospitals in Hillsborough, Manatee, Pinellas, and Sarasota counties received a total of 4,500
patient reminder cards and screening guideline facts sheets from the U.S. Preventive Services Task Force and American Cancer Society. In Miami-Dade, the local program navigator attended last July’s Florida Medical Association Annual Meeting and shared information regarding FIT with more than 400 physicians. The navigator worked locally with physicians and insurance companies to get more than 300 patients screened in six months. North Florida’s navigator works with the North Central Florida Cancer Control Collaborative, to improve colorectal cancer screening access in 11 predominantly rural counties: Alachua, Bradford, Dixie, Gilchrist, Lafayette, Levy, Union, Putnam, Columbia, Hamilton, and Suwannee. With their understanding of colorectal
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cancer resources and evidence based guidelines, navigators can support physicians to help assure that many more patients take advantage of colorectal cancer screening. Need help with your patients? Find out about patient navigators and ways physicians can participate in increasing colorectal cancer screening and creating change, visit www.doh.state.fl.us/Family/cancer/crc/ partnerships.html. Allison Barnes-Carter is a marketing specialist for the Florida Department of Health Bureau of Chronic Disease Prevention. Her experience in public health encompasses creating and disseminating action-driven messages for public and private agencies. She collaborates with the Florida Colorectal Cancer Control Program to encourage medical professional to promote screening and healthy lifestyle behaviors to patients as tools to prevent cancer.
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5 Minutes with Bruce Rueben
Florida Hospital Association leader discusses myriad changes, burdens impacting the state’s healthcare industry By LYNNE JETER
TALLAHASSEE— With the Florida Legislature convening March 5, Bruce Rueben is monitoring myriad issues at the state level in an era that’s arguably the most challenging time for the healthcare industry. Tampa Bay Medical News spoke to Rueben, president of the Florida Hospital Association (FHA) since 2008, about legislative priorities, industry challenges, and healthcare trends in Florida.
How has the recent shift in hospital ownership impacted Florida’s healthcare landscape?
When there’s consolidation, if you’re a provider within that organization, and the organization expands, you’re hoping they’re achieving economies of scale to be more cost effective, and also to coordinate clinical resources and operations more effectively so it benefits the patient. Often, smaller hospitals will become part of larger systems to gain access to capital or better contracts with payers, or even a combination of those things.
When you consolidate physician groups and clinics, then you’re able in theory to more effectively align incentives and create common goals around clinical performance and other factors. It makes it easier when everyone’s under the same governance. But what looks good on paper has to work effectively in the real world. We’ll see how all of it plays out.
What recent major legislative changes have impacted the industry?
The biggest change is the statute that directed the Agency for Health Care Administration to move from a per-diem payment methodology for inpatient acute care hospital services and Medicaid, to an all-payer refined (APR) diagnostic related group (DRG) methodology. That’s a major change and they’ve just introduced their recommendations for how that’ll be done. So that’ll play out as early as July, though it’s questionable at this point whether they’ll put it into place. The plan they’ve recommended is deeply flawed, so the Legislature will likely consider some changes to it.
What are top priorities on your legislative agenda for 2013?
To fix this APR/ DRG payment methodology, and to determine what the state’s going to do with the Patient Protection Affordable Care Act (PPACA). Is the state going to extend coverage for over 1 million Floridians through the exchanges and Medicaid? They have to do it Bruce Rueben through the exchanges, but will they extend that coverage through Medicaid to people who are up to 130 percent of the poverty level? Florida’s state senators and representatives must decide on implementing the PPACA and, more specifically, whether to extend healthcare coverage to nearly 1 million uninsured Floridians. Also on the table are changes to the way hospitals are paid through the Medicaid program and a variety of other regulatory matters. (View
the full breadth of FHA’s legislative priorities, as identified by the FHA Board of Trustees, in the 2013 Advocacy Agenda.)
What are the greatest challenges for hospitals in 2013?
When a hospital looks at its makeup of patients from a clinical perspective, they’re looking at individuals. When they’re looking at it from the standpoint of operating and delivering services to the community, they look at their patients in terms of coverage. In Florida, we have over 19 million people. Right now, 3.3 million are in the Medicaid program. Medicaid pays far less than what it costs to treat a patient, so that brings a lot of unmet costs to a hospital. Then you’ve got 3.3 million on Medicare. (CONTINUED ON PAGE 11)
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On the CUSP of Culture Change Making Patient Safety, Quality a Shared Priority By CINDy SANDERS
Mistakes happen. For many years that was the conventional wisdom in healthcare settings, but innovative programming from the Agency for Healthcare Research and Quality (AHRQ) shows mistakes don’t have to happen if everyone is on board to make safety and quality a priority. James Battles, PhD, a social science analyst with AHRQ’s Center for Quality Improvement and Patient Safety, noted the Comprehensive Unit-based Safety Program (CUSP) is an example of how to change the culture to achieve dramatic results. Battles, who has worked in the field since the mid-1990s, was focused on patient safety even before the landmark Institute of Medicine Report, “To Err is Human,” was released in November 1999. The report became a catalyst for the creation of intervention strategies to avert medical errors. A year after its release, Battles became the first expert hired by AHRQ to focus strictly on patient safety initiatives. By 2001, AHRQ began funding the work of Peter Pronovost, MD, PhD, FCCM, the renowned patient safety ad-
vocate with Johns Hopkins. The roots of CUSP can be found within that early work. In 2003, a large-scale demonstration project for CUSP focused on CLABSIs (central line-associated blood stream infections) was underway. The unique partnership between AHRQ, the Health Research & Educational Trust (HRET), Johns Hopkins University Quality and Safety Research Group, the Michigan Health & Hospital Association’s Keystone Center for Patient Safety & Quality and more than 1,000 U.S. hospitals yielded dramatic outcomes. Battles said the national program has resulted in a 41 percent decrease in CLABSI rates among participants. “We’ve prevented nearly 500 deaths and averted nearly $36 million in costs … and that’s a conservative estimate,” Battles noted. Building on that success, other CUSP programs have been launched with similar results. The next, Battles noted, is a new national CUSP program in the area of labor and delivery. The Perinatal Safety Improvement Program is expected to roll out this fall.
CUSP is a strategic intervention that integrates communication, leadership and teamwork to create a culture of safety. The program utilizes evidence-based strategies and includes training tools, standards for consistent measurement, leadership engagement and methods to improve teamwork among physicians, nurses and others impacting the safety
and well-being of patients. “The CUSP model is designed for a unit of care, but that unit of care can be anything. CUSP itself is an intervention strategy, and then the areas where you apply it are the targets of CUSP,” Battles explained. Based on the success seen in demonstration projects, he continued, “We are ‘CUSP-izing’ everything.” Previously, Battles said, the traditional approach to safety was to measure results … good or bad … and publish the information. “We miraculously thought just providing the information would lead to change.” What’s different about CUSP is the level of engagement of the entire team … from housekeeping all the way up to the CEO. Battles noted that former U.S. Speaker of the House Tip O’Neill once famously said, “All politics is local.” That same premise applies to patient safety. “It’s going to be at the unit level,” he said of implementing real change. Half jokingly, Battles added, “In the past, we’ve anointed someone as the ‘infection control czar,’ and if it didn’t (CONTINUED ON PAGE 10)
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The Birth of BPAN
International team identifies new neurodegenerative disease tion affecting the protein pantothenate kinase 2 (PANK2). Other mutated genes “The more we learn, the more we realize how were subsequently identified, most notalittle we know.” — R. Buckminster Fuller bly C19orf12 and PLA2G6. The common tie among the three is the accumulation While that particular version of the of iron in the brain, hence NBIA, which quote is attributed to American architect, results in developmental delays and neusystems engineer and poet Bucky Fuller, rological deterioration in movement and the sentiment behind it is one that has been cognitive functions. expressed by men and women of discovery Now a newly-discovered mutation for centuries. Certainly that holds true for in the WDR45 gene, located on the X an international team that has identified a chromosome, has been identified as a disnew neurodegenerative disease associated tinct entity of NBIA. Harik, who served as with iron accumulation in the basal ganchairman of the Department of Neurology glia located deep in the brain’s cerebral at the University of Arkansas for Medical hemispheres. Sciences from 1994-2010 “We are just scratching and continued on as a prothe surface here … we have fessor until his retirement a new disease,” said Sami I. at the end of 2012, said the Harik, MD, who was one discovery came from studyof the researchers involved ing MRI scans of patients, in identifying BPAN (betaparticularly pediatric papropeller protein associated tients, who were not achievneurodegeneration). ing normal developmental Neurodegeneration milestones. with brain iron accumula“Iron happens to give tion (NBIA) has been reca characteristic appearance ognized since the 1920s. to the head MR,” explained Originally called HallervorHarik. “You look and you den-Spatz disease, it was see dark areas in the basal Dr. Sami I. Harik later tied to a gene mutaganglia.” With PKAN (panBy CINDY SANDERS
For More Information Susan J. Hayflick, MD, chair of the Department of Molecular and Medical Genetics at Oregon Health & Science University, has focused much of her career on iron deposition in the brain. She spearheaded the BPAN research and was lead author on a scholarly paper that appeared in the Dec. 7, 2012 edition (vol. 91, issue 6, pp. 1144-1149) of the American Journal of Human Genetics. Sami I. Harik, MD, who recently retired from the University of Arkansas for Medical Sciences, was a contributing author on “Exome Sequencing Reveals De Novo WDR45 Mutations Causing a Phenotypically Distinct, X-Linked Dominant Form of NBIA.” The article can be found at www.sciencedirect.com/science/article/pii/S0002929712005782.
tothenate kinase-associated degeneration), he continued, “You get the so-called ‘eye of the tiger’ sign on the MRI … the dark area and in the center there’s a white area that is compatible with tissue necrosis.” In other entities of NBIA, he noted, “There is tissue iron accumulation but without necrosis.” Harik and other physician-scientists in Europe and America who were studying NBIA under the leadership of Susan J. Hayflick, MD, chair of the Department of Molecular and Medical Genetics at Oregon Health & Science University, would send blood samples from patients with NBIA to Hayflick. She performed genetic
and other biochemical studies on the samples and found a considerable fraction … 30 to 40 patients … did not fit the known diagnostic gene abnormalities. “In collaboration with the Institute of Human Genetics at the University of Munich in Germany, who performed exome sequencing on samples from these patients, in 20 of them, they described a definite gene mutation in the WDR45 gene located on the X chromosome,” said Harik. Interestingly, of the 20 patients, 18 were women and two were men. Harik said there are various explanations as to (CONTINUED ON PAGE 13)
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On the CUSP, continued from page 8
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change, you’d take them out and shoot them.” However, that approach hasn’t been particularly effective. Instead, Battles said, “Everybody has to have a shared ownership of risk. If they don’t own that risk and don’t share in the solution, you’re not likely to change.” To apply CUSP, the team looks at the area of concern, identifies the risks and begins to pinpoint solutions to avert or circumvent those risks. Through CUSP, the staff is educated on the science of safety and given the tools to utilize, such as checklists, to improve teamwork and processes. A senior hospital executive also partners with the unit to improve communications up the food chain so that the leadership is engaged in supporting the culture of safety. Battles said the ‘unit’ could be anything … an ICU team, a med-surg floor, an ambulatory surgery center, or an entire skilled nursing facility. It could also potentially be broadened to include new methods of care delivery, such as ACOs, but might need to be tweaked a bit. No matter the setting, using the
principles of CUSP allows for a culture change and measurable improvement. “It can be done. That’s the good news … the really good news,” Battles said. However, he cautioned, CUSP isn’t a magic bullet. “You’ve got to work at it, and you have to work really hard,” he said. “If you’re interested in improving patient care and delivering the best care to your patients, you can make improvements … and rather dramatic ones … but you’ve got to work at it, and everybody has to play.” He concluded, “The amazing thing is when everybody does get on board and start to see the changes, it’s immensely satisfying because no one ever wants to cause a patient harm.”
Learning More About CUSP A basic CUSP toolkit is offered on the Agency for Healthcare Research and Quality website. The materials — which include videos, Word documents and Power Point displays — are available to download at no charge at www.ahrq.gov/cusptoolkit.
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5 Minutes, continued from page 7 Then sadly in Florida, we have 4 million uninsured. Of that population of 19 million, more than 10 million are either covered through government programs that underfund healthcare, or 4 million have no coverage whatsoever and can pay nothing for their healthcare. It’s a huge challenge for hospitals. They provide nearly $3 billion annually for tremendous unmet costs and the number grows. Those costs are a hidden tax the federal government takes through the Medicare/Medicaid shift to people who can pay. That burden keeps growing. We’re now looking at another round of deficit reduction at the federal level that’s almost guaranteed to reduce further what Medicaid pays for hospital services. That hidden tax will grow on people who have commercial insurance to a point where it’ll be difficult to see all that shifted, so hospitals will be pressured to find ways to reduce services, to limit programs to limit their exposure, to stay in business. All of that is in the uncertainty of whether the state will extend coverage through Medicaid as a result of the health reform law. The problem with that is we’re already going to pay for this – no matter whether the state says yes or no. There’s already going to be a $10.7 billion cut to hospital payments under Medicare over the next 10 years. There’s already going to be a $700 million cut to Florida hospitals over the next 10 years for the patch they put on the debt ceiling at the end of the last Congress. That’s just a start. They’re going to be cuts to what Medicaid pays for Disproportionate Share Hospitals (DSH) to pay for the PPACA. Again, our patients are going to pay a premium tax for it through their insurance plans. So people in Florida are going to pay for the increased coverage for over 30 million Americans. If Florida says no to that coverage, then we’ll have higher levels of uncompensated care, unmet costs through Medicare and Medicaid, and less financing to deal with all that. That’s probably one of the greatest challenges we face. All of that, knowing the whole way hospital services under Medicaid for that 3.3 million people will change, too. The uncertainty and risk of change will challenge hospitals over the next year or so.
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Proactively Preserving Fertility New regulations from the American Society of Reproductive Medicine make it possible for healthy young women to freeze eggs for better chances of conceiving when they are ready for parenthood crystals that can damage the eggs’ chromosomes. The lack of ice crystals – a problem often encountered when using earlier, slow-freezing methods – is vital for healthy eggs. The woman’s age at the time of egg freezing also figures prominently, as success rates with egg, or oocyte, cryopreservation appear to decline as the woman’s age increases. Healthy women were not encouraged to use egg freezing unless they have fertility issues, and the report encourages counseling for women considering this option. But the overarching message is clear: Egg freezing offers advantages to women who choose to or must postpone childbearing into their late 30s or beyond, as well as women of any age who are considering invitro fertilization (IVF). Each fertility case is different, and women are advised to talk with their reproductive endocrinologist before making their decision.
By SEJAL DHARIA PATEL, MD
Life’s events don’t always happen on schedule. Sometimes young women fall in love, get married and start having healthy babies at a young age, when their fertility rate is highest. Other times, something else happens –economic circumstances, lack of the right relationship or serious health issues – to make pregnancy less than optimal or even impossible. For many years, the only real option available to healthy women was to wait it out, and hope that circumstances changed. But recent changes from the American Society for Reproductive Medicine (ARSM) now make it possible for those women to freeze their eggs, increasing the chance for a viable pregnancy later in life. Until the end of 2012, egg freezing was considered experimental, meaning it was only available to women with extenuating circumstances, such as a cancer diagnosis that required treatment that could leave them infertile. In its report titled “Mature Oocyte Cyropreservation,” the ASRM stated that pregnancy rates using eggs that were frozen led to the birth of healthy babies at a rate comparable to in vitro fertilization (IVF) methods using fresh eggs.
Delaying Parenthood The ASRM reviewed data from nearly 1,000 published papers on the topic, including many observational studies and a few randomized controlled trials. In these studies, eggs were frozen using a fast-freezing method, vitrification, which eliminates the forming of ice
So, why would a woman choose to postpone parenthood, particularly when research shows that fertility rates drop as we age? One of the primary reasons women wait to have children is because they have not found the right partner yet, and single parenthood is not something they want to pursue. With the new egg
freezing techniques, a woman can freeze a healthy egg when she is young and retain her opportunity to have a genetic child with her future partner. Likewise, some women have education and/or career plans that preclude having a child at a young age. Still others may want or need to wait until they are financially secure enough to raise a child. Of course, serious medical concerns still pose an issue for many young women. In those cases, cryopreservation offers a new line of hope. These women may have been diagnosed with medical conditions that require them to take medications that can damage or destroy ovary function; they may have specific genetic conditions; or they may have severe endometriosis or other problems that could require removal of the ovary. Yet they still have the ability to safely carry and give birth to a baby. Then there’s cancer. About 70,000 American women under the age of 45 are diagnosed with cancer each year. After diagnosis, the first question many of them ask is: “Will I still be able to have children?” Egg freezing before treatments such as radiation and chemotherapy, or before having surgery on their reproductive organs, can give them hope. This strategy typically requires a 10-14 day period of hormonal treatments to mature the eggs, thus making them suitable for freezing. This is a good option for patients who can safely delay their cancer therapy for at minimum two weeks. Recent strides in egg freezing techniques, such as vitrification, have made a big difference in subsequent pregnancy rates for women under these circumstances. This technology has also provided tremendous peace of mind for women and their families.
Relishing the Results
The best thing about egg freezing, of course, is the end result: A healthy baby for parents who are ready and eager to give him or her the absolute best that life can offer. The reality is that women have a precious window of time to protect their fertility. It’s always satisfying for physicians when technologies and new regulations allow for better chances of fulfilling that dream of a future family. Dr. Patel practices at the Center for Reproductive Medicine. Located in Orlando, CRM has achieved some of the highest success rates in the Southeast. The Center for Reproductive Medicine’s five infertility specialists share more than 90 years of combined experience and are nationally recognized as leaders in the field of reproductive medicine. For more information, please visit www.ivforlando.com.
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The Birth of BPAN, continued from page 9 why there is a female predominance in this form of NBIA. One reason might be that more pregnancies carrying a male fetus with the XY chromosome spontaneously abort if the WDR45 gene is defective. In the XX female fetus, it’s possible the healthy X chromosome provides some protection against fetal loss. In those born with BPAN, Harik explained, “This gene that is defective — WDR45 — encodes for the beta propeller protein.” However, he continued, at this time researchers do not know of a link between this protein deficiency and brain iron accumulation. “So there’s a lot we don’t know,” he said. What is known so far is that the mutation doesn’t seem to be hereditary. Blood studies were run on siblings and parents without finding evidence of WDR45 gene mutations. Those who present with BPAN have a number of neurological symptoms, often from very early childhood. “Many believe this abnormality has a high penetrance, which means it is unlikely it will go unnoticed by an astute clinician,” Harik said. However, he noted, there may be a major selection bias in those identified with BPAN by the researchers. All of them exhibited clear signs of developmental delay in childhood, with progression in adulthood with parkinsonism, dystonia and dementia. “These patients have hallmarks of neurodegeneration,” said Harik. “They don’t attain developmental milestones.” He added, “Some of them did relatively well until they were older and then because the basal ganglia is involved, they had basal ganglia dysfunction which manifests as a movement disorder.” What isn’t known is whether or not there might be those with a mutated WDR45 gene who have a milder form of the disease or even no visible symptoms. “The next step is to catalogue the clinical manifestations of the disease. There seems to be considerable variations amongst patients.” Particularly with women who have two X chromosomes, he continued, “There is a process in the body where one X chromosome is activated and the other is suppressed. There may be variations in how much the diseased X is expressed.” Ultimately, of course, researchers will hope to one day understand the mutation and find a way to reverse its effects. Echoing Fuller, Harik concluded, “There’s a lot of work to be done. Every time you discover a new thing, you discover just how much you didn’t know.”
It was the first note I ever got in crayon. “Thank you for making my daddy feel better.” I keep it on my desk, where I pore over patient records and cash flow statements. Because even if the medical field seems to be changing by the day, the reasons I practice never do.
SM
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GrandRounds St. Joseph’s Enrolling Residents for Cancer Study St. Joseph’s Hospitals are helping the American Cancer Society find “cancer fighters” in the Tampa Bay area who want to join a historic nationwide study about how genetic, environmental and lifestyle factors may cause or prevent cancer. Men and women ages 30-65 who have never been diagnosed with cancer are encouraged to enroll in Cancer Prevention Study-3 (CPS-3), and can do so during a registration event hosted by St. Joseph’s Hospitals on May 2, 10 a.m. – 4 p.m. in the Medical Arts Building. During the May 2 enrollment event at St. Joseph’s Hospital, research participants will complete a questionnaire and give a small blood sample, along with height, weight and blood pressure information. Participants don’t have to know all of the answers to the questionnaire at the time of the enrollment event. The most important things to do are explore the CPS-3 website, get answers to any questions and consider registering for the study. The study will follow participants for at least 20 years. So far, 100,000 people across the United States have enrolled in CPS-3 in the past two years, but this is the final year of enrollment and Hillsborough County has a goal of 900 participants for 2013. Last year St. Joseph’s Hospitals alone enrolled 240 participants. For more information about the study, or to enroll visit www.cancer.org/ cps3florida.
St. Joseph’s Children’s Hospital Earns National Recognition as Cleft Palate and Craniofacial Team The Commission on the Approval of Teams of the American Cleft PalateCraniofacial Association (ACPA) and the Cleft Palate Foundation (CPF) recently voted to fully approve St. Joseph’s Children’s Hospital’s Craniofacial Center as
CORRECTION In our story last issue on new ACOs, we listed all the new organizations named by CMS. In the original CMS list, there was an error in the phone number for Physicians Collaborative Trust ACO, LLC. The correct contact information for that group is: PHYSICIANS COLLABORATIVE TRUST ACO, LLC Larry Jones (407) 475-9213, ext. 204 ljones@pct-aco.com
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a Cleft Palate and Craniofacial Team for a period of five years. The approval is given to cleft palate and craniofacial teams that meet essential standards for care as set forth by the ACPA and CPF. St. Joseph’s Children’s Craniofacial Center provides pediatric patients with a comprehensive, state-of-the-art, interdisciplinary approach to treating head shape, cleft lip and palate and other complex craniofacial anomalies. Pediatric specialists that comprise the center’s team include:
• Audiologist • Child Life Specialists • Dentist • Geneticist • Lactation Consultant • Neurosurgeon • Ophthalmologist • Oral and Maxillofacial Surgeon • Orthodontist • Orthopedic Surgeon • Otolaryngologist • Pediatrician • Prosthodontist • Psychologist • Pulmonologist • Speech Language Pathologist Some of the procedures performed by St. Joseph’s Children’s Craniofacial Center team include facial reconstruction, cleft lip and palate surgery, skull reconstruction, correction of vascular anomalies (birthmarks), ear reconstruction and treatment of plagiocephaly (misshaped head).
HealthPoint Medical Group Welcomes Breast Surgical Oncologist Claudia Lago Toro, MD is Board Certified in General Surgery. She earned her Doctor of Medicine at the University of Puerto Rico School of Medicine in San Juan, Claudia Lago Toro, MD and completed a Surgical Residency as Chief Resident at Baystate Medical Center in Springfield, Massachusetts. She then served a Fellowship in Breast Surgical Oncology at Bryn Mawr Hospital in Bryn Mawr, Pennsylvania. As a Breast Surgical Oncologist, Dr. Lago Toro set up the current breast cancer center in Vineland, New Jersey. She treats both male and female breast cancer patients, as well as benign breast disease. She has extensive experience in minimally invasive breast biopsies, mastectomies with reconstruction, and the administration of breast brachytherapy for radiation therapy. She has also served as a Resident Clinical Educator at Tufts University in Boston, Massachusetts. Dr. Lago Toro’s clinical interests include patient education and creating awareness of breast cancer. She is a member of the American Society
of Breast Surgeons, Society of Surgical Oncology and American Society of Clinical Oncology.
20Th Annual Stepping Out Gala: Emerald Evening Join the St. Joseph’s Hospitals Foundation on Saturday, March 23, 2013, at 6:30 p.m. for the 20th Annual Stepping Out Gala: Emerald Evening. Chaired by Carl and Lyda Lindell, the gala will take place at A La Carte Pavilion. Benefiting St. Joseph’s Hospitals, this signature black-tie event is presented by Rooms to Go Children’s Fund and will feature live and silent auctions, dinner, and dancing. The featured entertainment for the evening is Grammyaward winning artist JT Taylor, former lead singer of Kool & The Gang and the voice behind hits such as “Celebration” and “Ladies Night.” This year’s Stepping Out Gala Honoree is St. Joseph’s-Baptist Health Care President and CEO Isaac Mallah, who is retiring in April after more than 35 years with St. Joseph’s Hospital. Since its inception in 1994, the Gala has raised nearly $4 million for patient care programs and services at St. Joseph’s Hospital, St. Joseph’s Children’s Hospital, St. Joseph’s Women’s Hospital and St. Joseph’s Hospital-North. Limited reservations are available starting at $300. To purchase tickets, or for information on sponsorship opportunities, please contact the St. Joseph’s Hospitals Foundation at (813) 872-0979 or visit www.SJHFoundation.org.
Jason North Appointed COO of TeamHealth Urgent Care Centers TeamHealth has appointed Jason North as Chief Operating Officer of TeamHealth Urgent Care Centers (THUCC). North has served as Jason North Executive Director of TeamHealth subsidiary After Hours Pediatrics Urgent Care since February 2009. North will work closely with THUCC’s senior leadership team to develop and implement an aggressive business plan that will align TeamHealth-owned urgent care centers and identify opportunities for hospital partnerships and expansion. Prior to this position, North was Director of Operations for Concentra Medical Centers in Florida, the nation’s largest provider of occupational medicine and urgent care. He is a national speaker on the topic of urgent care development; a faculty member of the Urgent Care Association of America; and a contributing editor for Health Matters and other healthcare-related publications. Medical News is pleased to provide space for press releases by providers in our Grand Rounds section. Content and accuracy of the releases is the sole responsibility of the issuer.
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