NORTHERN CALIFORNIA CHAPTER
MOVING TOWARD A WORLD FREE OF MS
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FALL 2010
GILENYA IS APPROVED THE ERA OF ORAL DRUGS BEGINS On September 22, the U.S. Food and Drug Administration approved fingolimod capsules for reducing the frequency of MS attacks and delaying the accumulation of physical disabilities in people with relapsing forms of MS. This is a milestone in MS therapy. The new medication, under the brand name Gilenya (pronounced Jil-EN-ee-ah), will be available as a “first line” treatment, meaning there are no recommendations for people to try other MS therapies before trying Gilenya. Novartis, the manufacturer, says the drug will be available for prescription in coming weeks. Gilenya is a new approach to controlling MS. It blocks receptors on some of the same T and B immune cells that have been implicated in causing MS damage. The drug causes some of these cells to remain in lymph nodes, inhibiting them from migrating into the brain or spinal cord. A second oral MS med is under review Last July, the FDA agreed to give “priority review” status to EMD Serono’s cladribine tablets with the hope of an approval decision this December. Cladribine is a chemotherapy drug that is used to kill T and B cells in the immune system and thus slow down the attack on myelin. The arrival of therapies that do not require
regular injections greatly increases options – especially for people who are not doing well on their current drug or who have deep aversion to needles. An informed choice While oral drugs have long been a goal for researchers, the choice will not be quite as simple as putting down a needle and popping a pill. Gilenya is a powerful drug with potential side effects and risks as well as possibilities. The label carries warnings about these, including decreased heart rate after the first dose. The drug also increases risks of certain infections. In the clinical trials, two deaths from herpes infections occurred in people who took Gilenya at a higher dose than the level that has been approved. A number of pretreatment tests will be required and people will be monitored for potential lowered heart rate for six hours following their first dose. On the up side, clinical trial data suggest that Gilenya has a stronger impact on reducing relapse rates than a standard drug, Avonex, and also delays accumulation of physical disability. For more details, including Frequently Asked Questions, and references to the clinical trials, please visit nationalMSsociety.org or call us for a printed copy of the September 22 News Bulletin.
MS CONNECTION FALL 2010 National MS Society Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 415-230-6677 | 800-344-4867 Chairman • Thomas Galizia Newsletter Editor • Jen Gainza The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS. © 2009 National MS Society, Northern California Chapter
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BOARD OF TRUSTEES Board Officers Thomas M. Galizia, Chair Deloitte Consulting Angela E. Lai, Secretary Wells Fargo Private Client Services David Larson, Treasurer Piedmont Grocery Board Members Laura Black, Audit Chair Needham & Company C. Budd Colby Colby Biomedical Consultants Elizabeth Crabtree-Hartman, MD UCSF MS Center, Department of Neurology Anthony DeLizza, Program Co-Chair First Light, LLC Michelle Dennedy Oracle Matt Frinzi Powervision, Inc. Douglas S. Goodin, MD UCSF MS Center David R. Hultman Davidson Investment Advisors H. Penny Knuff Fiduciary Trust International of California David Mauldin Doug Richardson, Program Chair John A. Schafer, MD Mercy Medical Group Dan Stokes JStokes & Associates Emeritus Board Members David Korn Fillmore Marks Gary Ryness The Ryness Company
NEWLY DIAGNOSED
LIVING WELL WITH MS
People live with MS, but is it possible to live well with MS? Many people do. They learn ways to address issues central to their overall well-being. “Wellness is not dependent on not having a disease—you can have a health issue and still live well. You can learn strategies to live optimally with the disease,” said Stephanie Fisher, MA, executive director of the Marilyn Hilton MS Achievement Center at UCLA, a joint program of the UCLA Department of Neurology and the Southern California Chapter of the Society. The Hilton Center recently shared its experiences as a leader in the wellness field. Here are some of what they view as core components of wellness. • Exercise. Physical activity blunts the impact of MS by improving the body’s overall condition—increasing strength, range of motion and cardiovascular health. “We know exercise is beneficial, within one’s personal limits,” said Denise Nowack, RD, executive vice president, Programs and Services, Southern California Chapter. Working with a health-care professional will help determine what and how much exercise works for you—whether it is tai chi, yoga, aquatic exercises, bicycling, or something else. • Eating well. “Good nutrition is important, as is managing weight, since extra weight adds to fatigue,” Nowack added. There are lots of
resources on eating healthily (and deliciously). Visit nationalMSsociety.org and search for “nutrition” to find recipes, meal planning and information on nutrients important to people with MS. • Knowledge. A current and accurate understanding of MS, its symptoms and treatments can help people navigate medical decisions and get more from their partnerships with health-care professionals. However, there’s lots of misinformation both online and off. Call us or visit nationalMSsociety.org to start finding up-to-date and helpful resources. • Emotional and spiritual resources. The grief and sense of loss that a diagnosis brings up are powerful factors. Paying attention to one’s inner self can help people learn “to recognize the things that drain them emotionally and how they can minimize them,” Nowack said. “People can develop practices to carry them through their lifetime.” For more information on all the aspects of living well with MS, visit nationalMSsociety.org/ healthyliving or call us for information about wellness-focused programs, classes, support groups and more for people with MS in this area.
Knowledge is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or e-mail formats. To register, call 1-800-344-4867, or visit nationalMSsociety.org/knowledge.
TOLL FREE NUMBER 1 800 344 4867
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RESEARCH
WHY DOES MS RESEARCH COST SO MUCH?
promising therapies will fail to prove out. For those that do, more time-consuming and expensive tests must be performed to ensure that a new drug is both safe and effective for people.
Fifteen years ago, Testing MS drugs is particularly complex, Dr. MS was a very Coetzee noted. A blood pressure pill either different disease. lowers blood pressure or doesn’t. But with MS, Some symptoms he continued, “We’re trying to measure what could be treated, happens to a person’s disease course, which you but there were no can usually see only over time. Changes in MS are drugs available to slow and subtle. All that time adds to the cost.” treat the disease The Society invests in university-based research itself. That isn’t Dr. Timothy Coetzee heads the so today, thanks across the world. But that research can only Society’s research subsidiary, become reality — a medication available for to MS research Fast Forward, LLC physicians to prescribe — with the involvement breakthroughs. of the private sector. Still, the need for better “You’re not doing treatments remains pressing “In today’s environment,” Dr. MS research in your Coetzee said, “there’s no guarantee and MS research continues toward this goal. that even good discoveries will garage.” actually make a difference in There’s no doubt that such people’s lives because of the expense involved in research comes at a cost. Bringing an MS drug from idea to reality can cost over a billion dollars. doing needed trials. Fast Forward wants to move the ball down the field a little faster. We don’t What exactly makes MS research so expensive? want to leave it to chance.” We asked Timothy Coetzee, PhD, president For example, Amplimmune, a startup of Fast Forward, a research subsidiary of the pharmaceutical company in Rockville, Md., is Society established to fast-track research currently testing a drug called Amplimmune-110 into MS and help bridge the gap between for MS and other autoimmune diseases, with research findings and the companies that will support from Fast Forward. manufacture and market the therapy. “We matched Amplimmune up with MS “You pay scientists to design and execute researcher Stephen D. Miller, PhD, of research plans, you pay technicians to analyze Northwestern University,” Dr. Coetzee said. “Dr. results,” Dr. Coetzee told us. This work requires Miller discovered new ways the drug works that highly specialized equipment in physical plants Amplimmune’s scientists weren’t aware of. We that the FDA has to approve. “You’re not doing now hope clinical trials can begin within the next MS research in your garage,” he pointed out. couple of years.” After all the lab and animal studies, many 4 |
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LIVING WITH MS
ADVENTURES IN CHOLESTEROL BY KATHERINE SHAW
check for me. As it turns out, I can’t blame the reading glasses on my MS either. Go figure. However, in thinking through this little cholesterol adventure, I have to say that I’m pleased with the outcome. Better normal aging than the progression of disease! Katherine Shaw lives in Ohio.
I’ve always considered my cholesterol level a source of pride. At a happy 150ish for the last 25 years, I was sure that cholesterol would never be a concern. I have MS. Isn’t that enough?! So last year, I go to the doc for a check up. Blood work comes back with a cholesterol level of 210. But the doc says no big deal. Since I didn’t fast beforehand, it’s probably nothing. But I made sure to fast this year and my level was 210 again! What? I haven’t gained weight, or done anything to deserve this. I don’t get it! On a visit to my MS doc, I whip out my blood tests and ask if this ridiculous jump could be related to my MS. Both the doctor and the nurse smirk. “What?” I ask, feeling left out of the joke. “You’re younger than we are, but not by much. It’s called aging,” explained the doctor. “And no, you can’t blame it on the MS.” Since that time, I’ve become a better listener when my middle-aged friends complain about their health. They’ve become a wonderful reality
Prevention Counts Although managing MS can feel like a fulltime job, it’s important to pay attention to general health, too. People with MS face the same risks of cancer, heart disease and stroke as everyone else. For a list of screening and vaccinations recommended for your age group, download the Preventive Care Recommendations brochure at nationalmssociety.org—or call us for a copy.
APPLY NOW FOR SCHOLARSHIPS Highly qualified high-school seniors who have been diagnosed with MS or who have a parent with MS are eligible for the National MS Society’s scholarship program. Additional criteria include financial need, academic record, participation in school or community activities, and an essay (written by the applicant) on the impact of MS on his or her life. Awards range from $1,000–$3,000 and a small number of four-year awards are offered. Applications for 2011 scholarships will be accepted (online only) between October 1, 2010, and January 14, 2011. For more info, visit nationalMSsociety.org/ scholarship or call us. TOLL FREE NUMBER 1 800 344 4867
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SCHOLARSHIP
$11,500 IN SCHOLARSHIPS AWARDED
seven years ago and it immediately became a source of great encouragement for families concerned that MS might put college out of reach. This year, 470 awards totaling $956,400 The Northern California Chapter of the were presented nationwide. Applications are National MS Society has announced this year’s evaluated on financial need, academic record, recipients of its annual Scholarship Program. leadership and volunteer activities, a statement of educational and career goals, and letters of Sten Hansen of San Jose has received a $3,000 recommendation. Applicants are also asked to scholarship to apply towards his education provide a personal statement describing the at Yale University. Sten was also selected as impact MS has had on their life. Scholarships a Top Scholar, placing him among the best range from $1,000 to $3,000 and typically applications on a national level. James Fanucchi cover one year, although a limited number of of El Verano was awarded $3,000; Claire awards may exceed this amount. Burtner of Alameda was awarded $1,500; Leah Thompson of Fort Bragg was awarded $1,000; Ryan Globus of Capitola was awarded $1,000; Ilene Rosas of Orinda was awarded $1,000; and 2010 a student in Sacramento was awarded $1,000. The program helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent living with MS; or anybody living with MS who has not yet been to a post-secondary school. In addition to the emotional toll, MS can have a substantial financial impact on a family. The direct and indirect costs of MS, including lost wages — even for those with health insurance — are estimated at more than $30,000 annually, or $2.2 million over a lifetime. This makes funding a college education that much harder.
SCHOLARSHIP RECIPIENTS
James Fanucchi
Leah Thompson
Ryan Globus
Ilene Rosas
Claire Burtner
Program Continues To Grow Across the Country The Society established its scholarship program 6 |
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ADVOCACY
PRESCRIPTION PARITY (D-OH)
(R-TX)
A collaborative effort between the Society, legislators, clinicians and other health organizations paid off in July when the Part D Off-label Prescription Parity Act (H.R. 5732) was introduced into Congress. Sponsored by Representatives Mary Jo Kilroy (D-OH) and Mac Thornberry (R-TX), the bill is designed to allow coverage of medication prescribed for an off-label use when such use is supported by peer-reviewed medical literature—as is currently the standard in Medicare Part B and Part D for medications used to treat cancer. Other Medicare consumers, including those with MS, are currently unable to access safe and effective medications under Part D because the program won’t cover off-label uses of drugs— that is, for uses not specifically approved by the FDA. Nonetheless, many doctors—using their professional judgment and information from the medical literature—do prescribe medications off-label to treat symptoms of MS. These include Provigil (modafinil) and Nuvigil (armodafinil) for fatigue, and Zofran (ondansetron) for tremor.
Without this change in policy, individuals will continue to be denied coverage for treatment that could vastly improve their quality of life. “Prohibition of medically necessary medicines reduces treatment options for patients and compromises the private doctor-patient relationship,” said Linda Buchwald, MD, chief of neurology and medical director of the MS Comprehensive Care Center in Cambridge, Mass. “I want to be able to prescribe treatments that will be beneficial to my patients, at no unnecessary economic burden to them.”
MS REGISTRY The Society has continued to work hard to help pass a bill in Congress that would establish an MS registry at the Centers for Disease Control and Prevention. A more accurate estimate of who has MS and how common it is could enhance areas of research, including genetic and environmental risk factors. The last national study of MS incidence and prevalence was conducted 35 years ago, and the lack of upto-date information inhibits MS research and makes it harder to target programs and services. Take Action If you are interested in either of these measures, check if your senators and representatives have co-sponsored the bills. Look up H.R. 5732 (Part D Off-label Prescription Parity Act) and H.R. 1362/S.1273 (National MS and Parkinson’s Disease Registries Act) on Thomas.gov. If they have not sponsored the bill, ask for their support by calling or writing their offices. Be sure to thank them if they have already become supporters. TOLL FREE NUMBER 1 800 344 4867
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MONEY MATTERS
QUESTIONS ABOUT HEALTH INSURANCE CHANGES? BY THE HEALTH CARE REFORM IMPLEMENTATION TEAM Health care reform is now law, so the name of the government’s official Web site has changed. Visit healthcare.gov (not healthreform.gov). While many regulations remain to be written, not everything you may hear about this law is accurate. Check the official Web site. A section on this site allows comparison shopping for health insurance. It links to what’s available in each state -- private plans, public programs, and community health-care services. Prices are being posted as they are set, so users are invited to check back often for updates. If you currently have employer-based or individually-purchased insurance that works for
you, you don’t need to do anything. About 50% of Americans living with MS have this kind of coverage. The Affordable Care Act is designed to protect people from some potential insurance abuses. These changes are being called “The Patients’ Bill of Rights.” As of September 23* all new or renewed jobbased or private plans: • Cannot exclude your children under 19 because of disabilities or pre-existing conditions. • Cannot drop coverage because of high claims. • Cannot impose “lifetime” limits. • Must allow your adult children to stay on your plan until age 26. *Please note that most job-based plans renew at the turn of the year, meaning that these protections kick in on January 1, 2011, for most people. If you encounter exceptions to these provisions, call us. Our staff and people in the Information Resource Center in Denver can help.
If you currently have no insurance and have been uninsured for six months or more, call us to discuss the Pre-existing Condition Insurance Plans (PCIPs). They are starting up in every state, and no one can be refused coverage due to their health. But until the tax breaks and help that start in 2014, you may find the cost a problem. Call us anyway to explore other options. Planning for 2011
“You can choose two out of three.” 8
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As usual, people on Medicare can switch their plans between November 15 and December 31. Review your choices carefully. Government subsidies for Medicare Advantage plans are being reduced, and some of these insurers will respond by raising prices or limiting benefits. Traditional Medicare benefits are being increased, not limited. Mammograms, colon
MONEY MATTERS
cancer screening, vaccinations and more will be covered in full with no co-pays or deductibles. Medicare Part D will be different The “donut hole” is still with us, but in 2011 name-brand drugs including biologicals will be offered at 50% off while the individual is in the gap. Generics may be even more steeply discounted. Check the list of covered drugs (the formulary) in any plan you are considering. As
before, drugs for MS symptom management prescribed “off label” —as many are— will not be discounted. MS activists are working hard to change this. If you have no Internet or need more help, call us at 1-800-344-4867. The Health Care Reform Implementation Team is 12 chapter and national Society staff members tasked with explaining the new law.
MORE RESOURCES ON THE AFFORDABLE CARE ACT GO TO THE SOURCE:
THE BIG PICTURE:
U.S. Department of Health & Human Services Web site for consumers
Health Reform GPS – A joint project of George Washington University’s Hirsh Health Law and Policy Program and the Robert Wood Johnson Foundation. See especially their “Reform Overview.” Healthreformgps.org.
healthcare.gov cuidadodesalud.gov cms.gov medicare.gov
HELPFUL TIME LINES SHOWING CHANGES TO COME: The Kaiser Family Foundation: kff.org/ healthreform/8060 .cfm. Families USA: familiesusa .org/assets/pdfs/healthreform/reform-in-the-firstyear.pdf
FOR PERSONAL COUNSELING: National MS Society insurance specialists: Call 1-800-344-4867 and ask for an MS Navigator.
Consumers Union: consumerreportshealth.org AARP’s Users Guide to Health Care Reform: http:// www.aarp.org/health/ health-care-reform/info-042010/a_user_s_guide_to_ health_care_reform.html The National MS Society: nationalMSsociety.org/ healthcarereform
TOLL FREE NUMBER 1 800 344 4867
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WAYS TO GIVE
A CHARITABLE GIFT ANNUITY BY DIANE MAGLIERI, NATIONAL GIVING OFFICE It’s the perfect gift: a lifetime of payments and a lasting legacy benefiting people with MS. A charitable gift annuity is a simple contract between you and the Society that can benefit you or a loved one that you designate, and the movement toward a world free of MS. In exchange for your irrevocable gift of cash, appreciated securities or qualified real estate, the Society agrees to pay you, or the beneficiary you choose, a fixed yearly amount at favorable rates for the rest of your life or that of your chosen beneficiary. You choose when the payments start: now or at a later date, such as during retirement years. Benefits to you
programs and services critical to addressing theLook for t ‘Communi needs of those affected by MS.
benefits a
To receive personalized details on how a charitable gift annuity with the Society can work www.nat for you, contact us at 1-800-344-4867, call the National Individual Giving Office at 1-800923-7727 or e-mail giftplanning@nmss.org.
Another Way to Make a Difference Participating in your employer’s charitable giving campaign is yet another way to fund research and help people with MS and their families keep moving their lives forward. Designate the amount you’d like to contribute and your gift will be automatically deducted from each paycheck and donated to the National MS Society.
• Provides a legacy of discovery and care • Provides a lifetime of consistent payments to you, your spouse, parent, caregiver, child or other loved one • Eligibility for an immediate charitable income tax deduction • Option to select an advantageous start date for the fixed lifetime payments • Membership in the Lawry Circle, a group of generous donors making legacy gifts Benefits to people living with MS and the National Multiple Sclerosis Society • The Society receives the remaining balance of your gift annuity to support MS research and 10
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CFC# 11409
LOCAL NEWS
UC DAVIS MEDICAL CENTER CLINICAL STUDY OPPORTUNITY The Neurology department of the UC Davis Medical Center is taking part in a research program for the development of a new oral drug for multiple sclerosis. We are currently looking for patients suffering from relapsingremitting multiple sclerosis for a clinical study. If you are a man or woman, 18 to 55 years of age, with a diagnosis of relapsing-remitting MS, you may be a potential candidate for this study. There will be a 4-week period to evaluate your eligibility followed by a 24-week study period. During this time you will visit the Neurology department 11 times and will have an MRI (Magnetic Resonance Imaging/Image) seven or eight times. You will also be asked to come back to the Neurology department one week and four weeks after the end of the study. You will have an additional MRI at the visit four weeks after the end of the study. Following the 24 week study period, participants will be offered to continue with an extension study. Janelle Butters, RN, can provide you with more information about the study.
NORTHERN CALIFORNIA CHAPTER ANNUAL MEETING SAVE THE DATE! Sunday, November 14th 1:00 pm – 3:00 pm Sacramento, CA Come celebrate a year of progress. Join members of the Northern California Chapter for a research luncheon and celebration of our 2009 fundraisers and volunteers. Attendees will learn about the research successes in 2010 and our chapter will honor volunteers and event participants who have gone above and beyond to move the chapter closer to a world free of MS. Join other members, volunteers, and staff to commemorate the Chapter’s accomplishments in the past year and to elect the 2011 Board of Trustees. Cost of program is $25. Pre-registration is required by Friday, November 5th. To register, please call 1-800-344-4867 or visit us online at www.MSconnection.org.
Participation in the study (including study medication and all clinical examinations and laboratory tests) will be free of charge. Study participants will be reimbursed a reasonable amount for their transportation costs. Are you interested in taking part in this clinical study? Please contact Janelle Butters, RN at 916-734-6276 for more information. TOLL FREE NUMBER 1 800 344 4867
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PHIL KEOGHAN HOSTS MOVIE SCREENING FOR NORTHERN CALIFORNIA CHAPTER Phil Keoghan, host of the hit CBS series The Amazing Race hosted an exclusive screening of his new movie “The Ride” in San Francisco on September 17, 2010. “The Ride” chronicles Phil’s coast-to-coast voyage where he puts his 41-year-old body to the test like never before. In March of 2009, Phil left Los Angeles on his bike for a 40 day ride across America that covered over 3,500 miles. Joining Keoghan for this grueling journey were his wingman Ben, best friend Scott, a former CHP Officer and his father. Together they faced everything from sand storms and freezing temperatures to illness and injury. His cross country journey raised $500,000 for MS and provided invaluable media exposure for the National MS Society. The screening was held at the Metreon theater in San Francisco. After the screening , Phil took audience questions about his cross country ride, current projects and plans for the future.
GET INVOLVED WITH NORTHERN CALIFORNIA WALK MS 2011 Walk MS is the rallying point of the MS movement, a community coming together to raise funds and hope for a future free of MS. In 2010, Walk MS Northern California was a huge success and raised $1.28 million, money that went to fund innovative programs and services and groundbreaking research for the 20,000 Northern Californians living with MS. Volunteers are an integral part of Walk MS and the success of Walk MS 2010 is in large part due to the support of our volunteers. We’re currently looking for individuals who would like to be part of the planning process for 2011 Northern California walks and help us continue to plan successful, fun events. Please contact Nicole LiaBraaten at Nicole.LiaBraaten@nmss.org or 800.344.4867, option 2, ext. 73018 to get involved.
Thank you to Phil for hosting this great screening and to the Metreon for hosting. A special thank you goes out to Tom Sherak, a Southern California Chapter board member who facilitated the event. If you are interested in learning more about Phil and “The Ride”, please visit www.philridesacrossamerica.com. 12
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Members of the Modesto Walk MS committee