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FALL 2013 NORTHERN CALIFORNIA CHAPTER

MS CONNECTION NEWSLETTER WHAT DOES THE AFFORDABLE CARE ACT MEAN FOR ME? Starting this October, people will begin signing up for health insurance coverage that may have changed as a result of the Affordable Care Act, the federal healthcare reform legislation that was passed in 2010. How will it affect you and your family? Is there anything that people with MS need to know? A lot depends on the type of insurance coverage you currently receive.

Individual and Family Plans The biggest changes for people who currently have health insurance are in store for those people who buy health insurance on the individual market for themselves and their families. Will I be able to purchase health insurance if I have been denied in the past? Yes. The first critical change is that health insurers can no longer deny people for pre-

INSIDE 06 THIS ISSUE

NORTHERN CALIFORNIA’S FIRST MS ACHIEVEMENT CENTER

existing conditions such as MS. People who were previously uninsured will be able to purchase insurance as a result of the law. Perhaps more importantly, they will not pay more for their insurance premium than people who are healthy. A critical issue to understand is that “Obamacare” is not free healthcare. There are a significant amount of costs that people with health insurance will need to shoulder. People with high healthcare needs will still need to manage their medical expenses to the extent possible. However, the total out-ofpocket medical expenses are capped for the year at $6,400 for an individual and $12,800 for a family. Now that it is required for health insurers to offer coverage to anyone and health insurance companies are prevented from charging more to people who are sick, means that most Americans are now required to have health insurance coverage either through public programs (such as Medicare), their employer, or the individual market. However, there are exceptions to this rule for affordability, religious and other reasons. ... continued on page 3

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PROGRAMS TO HELP YOU LIVE YOUR BEST LIFE

12 LEAVING PARADISE TO VOLUNTEER AT BIKE MS: WAVES TO WINE

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MS NOW RESEARCH REVOLUTION

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MS CONNECTION: FALL 2013

LETTER FROM THE PRESIDENT

MS COMMUNITY PREPARES FOR HISTORIC CHANGES IN HEALTHCARE Dear Friends,

“THE SOCIETY’S PROMISE AROUND RESEARCH IS CLEAR: STOP DISEASE PROGRESSION, RESTORE WHAT’S BEEN LOST, AND END MS FOREVER. ADDRESSING THE CHALLENGES OF EVERYONE AFFECTED BY MS REQUIRES A SIMILAR FOCUS AND PROMISE.”

CONNECT WITH US ONLINE: Northern California Chapter nationalmssociety.org/can can_info@nmss.org Like us: /msnortherncal Follow us: /msnortherncal

As the cover story suggests, unprecedented change in our health care system is coming. The critical implementation phase of the Affordable Care Act (ACA) goes into effect in October. We at the National MS Society want to ensure that people living with MS and their loved ones have the information necessary to maximize the law’s benefits and know how to navigate the changes during the program’s roll-out from October 2013 through March 2014. Our article on the Affordable Care Act featured in this issue outlines the all-important aspects relative to those living with chronic conditions. Included in the ACA are key provisions which will improve the lives of those living with MS: • Persons with a pre-existing condition cannot be denied coverage. • Persons with MS and other chronic conditions cannot be charged higher premiums because of their health status. • There are no longer lifetime caps on health coverage because a person has MS or another condition and annual caps are limited. Please know the National MS Society is here to help. We are committed to comprehensive, quality health care for all. To learn more about the resources available to you please contact an MS Navigator at 800-344-4867 or turn to page 14. Warm regards,

Janelle Del Carlo Chapter President Northern California Chapter

NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867 ... continued from page 1 The penalty is small in the first year (only $95) but it rises to $695 by the third year. Will health coverage be affordable? Subsidies are available for working and middleincome people to help make health insurance more affordable. For a family of four, subsidies are available for those with up to $90,000 in income. You can find out whether you and your family are eligible for a subsidy when/if you apply for coverage through the Exchange. These subsidies are advances, meaning that if your income goes up, you may have to repay some of the subsidy money that you received from the government. People with moderate income can also see if they can receive financial help to reduce the cost of their premiums, as well as to reduce the amount of out-of-pocket expenses for health services and benefits incurred when they apply for coverage. The additional help toward out-of-pocket costs is

NATIONAL MULTIPLE SCLEROSIS SOCIETY Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158 1-800-344-4867 Board Chair: Angie Lai Chapter President: Janelle Del Carlo Editor: Jen Gawler © 2012 National Multiple Sclerosis Society, Northern California Chapter

03 only available for people who choose one of the silver level plans, and the amount will be based on income. The marketplaces, or exchanges, that were set up as a result of reform are also helping to drive down costs. People who have been buying plans from high risk pools, Guaranteed Issue Plans, or COBRA coverage as a result of reform are likely to see significantly lower premiums and out-ofpocket costs. Will I be able to keep my plan? During the health reform debate, President Obama repeatedly emphasized that “If you like your health insurance plan, you can keep it.” Technically, he was talking about the coverage that people had at the time that the bill was passed into law. However, the government did not force insurers to continue to provide products that they chose to cancel. ... continued on page 4

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 Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

04 It will be very important to keep a close eye on the mail for communication from your health insurance plan. Some may allow people to keep the coverage they had before March 23, 2010 when the law was passed; others will not. This pre-ACA coverage may be less expensive, but also have significantly fewer benefits. When can I buy coverage? People who need to buy a new individual health insurance plan must do so during a six month period between October 1, 2013 and March 31, 2014. This open enrollment period will be shortened to three months in future years. Coverage becomes effective on January 1, 2014 for people who sign up for coverage between October 1 and December 15, 2013. For people who sign up between December 16, 2013 and January 15, 2014, coverage will be effective on February 1, 2014. Following that, coverage will be effective on either the first day of the following month (if a consumer enrolls by the 15th of the month) or the first day of the second following month (if a consumer enrolls after the 15th of the month). There are special enrollment periods outside of this window for people who have had a change in life circumstance, such as losing a job. People cannot simply wait until they are sick in order to purchase insurance. Overall, the changes to the individual insurance market will benefit those who need health insurance coverage such as most people with MS. The tradeoff is that people who were buying bare bones coverage (or no coverage at all) will need to pay more into the system or pay a penalty.

MS CONNECTION: FALL 2013 Employer-Sponsored Coverage If you have coverage through your employer, you are not likely to see many changes as a result of the Affordable Care Act. There are a couple of key issues for people who get coverage through their employer. The first is that healthcare reform eliminates “job lock.” In the past, many people, such as those living with MS, stayed with their jobs to preserve their health insurance coverage, knowing that they couldn’t get or afford to buy health insurance as individuals. That may no longer be the case. The second is a technical issue, but an important one. People are only eligible for subsidies if they do not have an affordable offer of health insurance from their employer. An employer plan is considered affordable as long as it costs the employee no more than 9.5% of his/her W-2 income. Affordability is only based on the cost for individual coverage. If an employer offers family coverage but this broader coverage is not affordable, the worker’s family will not be eligible for a subsidy to purchase coverage on the exchange. This affects only a small number of people, since children are always eligible for S-CHIP, the public health insurance program for low-income household children under 18. Income eligibility for S-CHIP in California is up to 250% of the federal poverty level and is not a change brought on by health reform.

Medicaid (Medi-Cal) Coverage Medicaid, the program for people with lower incomes or ongoing long-term care needs they cannot cover through their own funds is called

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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867 Medi-Cal in California. If you are eligible for Medicaid coverage, most of the changes of the Affordable Care Act have already been put in place. California developed a Low Income Health Program that was a bridge to reform so few new changes will be apparent as of January 1, 2013. The biggest result of this process is that many people were moved into managed care coverage. This holds promise for better integration and coordination of care, but it can also create issues of access to healthcare providers.

Medicare Coverage There are very few consumer-facing changes to Medicare as a result of the Affordable Care Act but two changes are especially beneficial to people with MS. The prescription drug coverage gap (or donut hole) is being phased out. In 2013, the coverage gap begins when total prescription drug costs hit $2970 and ends when total costs reach $4750. During the gap, beneficiaries must pay the full cost of their medications. The ACA gradually eliminates the coverage gap by providing automatic discounts for any drugs needed during the gap period. In 2013, brand name drugs needed during the gap are discounted by over 50%. Additionally, Medicare now covers certain preventive services, such as screening mammograms, colonoscopies, bone density tests and more at no cost to you. No deductibles or copayments are required for these and other recommended tests and vaccines that help keep you healthy. You can also get an annual wellness visit or check-up at no additional cost. Some high-net worth individuals will pay more toward Medicare and the government has reduced

the amount that it pays to some (but not all) Medicare Advantage plans. Most of the changes to Medicare were directed at doctors and hospitals, penalizing them, for example, for having a higher than average number of preventable readmissions or healthcare acquired infections. These changes to the law should help improve the care that Medicare patients receive. There are also dramatic moves to improve the coordination between Medicare and Medicaid, which is important for people who have long-term care needs, such as some people living with MS.

Understanding Health Reform There are many places where consumers can get assistance understanding their new rights and responsibilities under health reform at a more detailed level. The first is to work with an insurance agent who has been certified to sell coverage which is compliant with health reform. Agents will be earning this certification over the next few months. Using an agent does not cost the consumer any additional money, and most have become experts on health reform. Californians can also call the service center of Covered California, the state’s new exchange, at 888-975-1142. Information can be found online at www.CoveredCA.com, such as, which insurance plans will be available on the exchange, what the benefits are and what the cost will be. Consumers can also call their insurance plan or contact the HR department of their employer. Health reform is a big process, not limited to the provision of the bill that was passed by Congress over three years ago. Many more changes have ... continued on page 14

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MS CONNECTION: FALL 2013

NORTHERN CALIFORNIA’S FIRST MS ACHIEVEMENT CENTER

MS Achievement Center. Mercy’s new MS Achievement Center will work closely with the National MS Society to provide wellness programming to address the physical, mental, cognitive, recreation, and information needs of people with MS.

The Mercy MS Center, a National MS Society Partner in Care, has been awarded a grant from the Conrad N. Hilton Foundation in the amount of $890,000 to establish Northern California’s first MS Achievement Center, introducing wellness services for patients and their families facing the challenges of MS. The center, slated to open in December 2013, will partner with the Northern California Chapter to deliver programming for people living with MS in the Greater Sacramento area.

“These services will greatly improve the physical function and quality of life for both patients and their families,” added Dr. Schafer. “We hope the success of the new Mercy MS Achievement Center will contribute to the momentum for establishing similar programs nationwide.”

The Conrad N. Hilton Foundation has a long history of generous support for National MS Society programs. The Marilyn Hilton MS Achievement Center at UCLA was established in 2001 by the Southern California Chapter in honor of Marilyn Hilton who died from complications of the disease. The Marilyn Hilton MS Achievement Center at UCLA has pioneered new National MS Society programming for MS care, emphasizing wellness services to complement traditional clinical care. “Mercy MS Center recognizes the substantial work of the Hilton Foundation and the Marilyn Hilton MS Achievement Center in establishing a framework and knowledge base of wellness programming for people with MS,” said Dr. John Schafer, director of the Mercy MS Center and the future Mercy

The Hilton Foundation’s grant of $890,000 will provide the necessary startup capital and operational expenses for the project’s $1.5 million budget. “The Hilton Foundation grant support has created the necessary catalyst to initiate long-needed MS wellness programming in the Sacramento region,” said Michael Taylor, Dignity Health’s senior vice president of operations for the Sacramento-San Joaquin service area. The Mercy MS Center was the first in California to be designated a Center for Comprehensive MS Care by the National MS Society. “Mercy MS Center is committed to the care of people with all stages of MS,” said Dr. Schafer. “The gift from the Hilton Foundation will allow us to extend the comprehensive clinical services of the Mercy MS Center to provide access to much-needed programs and services that are not currently available for people in our region living with MS.” ◊

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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867

ACCESSIBLE FROM THE COMFORT OF HOME Registration is required for all programs. Please call 1-800-344-4867 or visit www.nationalMSsociety.org/can to register.

Teleconference: Affordable Care Act: Key Provisions for People with MS Thursday, October 3rd | 6:30 - 7:30 p.m. This teleconference with speaker Kim Calder, MPS will cover: • The Society’s involvement in healthcare reform • How the Affordable Care Act impacts private health insurance, Medicare, and Medicaid • An overview of the new Health Insurance Marketplace and state Exchanges • Additional resources about the Affordable Care Act for people with MS

Teleconference: Organizing and Clearing Clutter Tuesday, October 8th | 12:00 - 1:00 p.m. Learn ways to nurture yourself through the sorting and clearing process with Catherine Freemire, LCSW.

Teleconference: Managing the “Roller-Coaster” of Emotions in Chronic Illness Tuesday, November 12th | 12:00 - 1:00 p.m. Living with a chronic illness can sometimes make life unpredictable. Lisa Geren, MSW

will help you identify the tools to manage the emotional impact of living with MS.

Online Newly Diagnosed Orientation Thursday, November 14th | 6:00 - 7:30 p.m. A diagnosis of MS can create many unexpected emotions that leave you with a strong need to understand the changes you may be facing. Dr. Elizabeth Crabtree will address the most common concerns for people who are newly diagnosed. This orientation provides an opportunity to have your questions answered and learn more about resources available.

Teleconference: Eating Well, Eating Easy Thursday, December 5th | 6:30 - 7:30 p.m. This teleconference with speaker Denise Nowack, RD will cover: • What gets in the way of eating well • Strategies to integrate healthful eating • Diet and overall health, MS and managing symptoms.

Teleconference: Depression and MS - Why it occurs and what you can do about it Tuesday, December 10th | 12:00 - 1:00 p.m. Dr. Steven Gemignani, Licensed Psychologist will describe the signs and symptoms of depression for people with MS. He will also review specific factors that may cause depression for those with MS and various options available to reduce depression.

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MS CONNECTION: FALL 2013

LEAVING PARADISE TO VOLUNTEER AT BIKE MS: WAVES TO WINE

“I always felt like I should be right there with them somehow, helping raise funds but I have never been a biker,” said Linda. “So, in an effort to support them and do my part, I decided to volunteer to work at the event and support them in a way that I can.”

Linda Green and her husband, Dan are living the dream all because of MS. Dan was diagnosed with MS 24 years ago when he experienced "drop foot" and found himself falling frequently. His progression was slow and steady over the course of seven or eight years and in 1998 they decided to fulfill Dan’s dream to set sail for Mexico in their sailboat. After a year or so in Puerto Vallarta and Mazatlan, Dan’s MS progression made it unsafe to sail so they bought a power boat on which they lived and cruised for the next seven years, logging over 20,000 miles. They finally settled down in Puerto Vallarta where they live today.

Some volunteers like Linda don’t just give their time to support the event and cyclists; they raise money as well. “I simply added email addresses from my contact list, modified one of [the] great templates [on the Bike MS website] and sent the email,” she said. When this publication went to print, Linda had already raised $2,665! You can be a Star Volunteer like Linda if you raise over $100 in addition to volunteering. As a thank you, you will receive a Star Volunteer dog tag.

Linda and Dan will travel to the Bay Area for the 30th anniversary of Bike MS: Waves to Wine on September 21-22. This is the first year Linda will volunteer at Bike MS, although close friends have been riding for the past five years on Team Green in Dan’s honor.

DAN GREEN (SEATED) AND WIFE, LINDA (TO HIS LEFT) WITH TEAM GREEN AT LAST YEAR’S POST-RIDE PARTY

To volunteer like Linda, ride like Team Green, or donate to create a world free of MS, visit www.WavesToWine.org. And if you attend, be sure to say hello to Linda- she’ll be greeting cyclists at registration on Saturday. ◊

NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867

135 MILES FOR A WORLD FREE OF MS Ken Zemach of Redwood City recently ran for 28 hours, 37 minutes and 22 seconds in The Badwater Ultramarathon, a 135 mile run which starts in Death Valley and ends, if you manage to finish, halfway up Mt. Whitney in California. He participated as part of the Race to Stop MS program, where participants can choose any run, ride or swim and fundraise to create a world free of MS.

13 for the extensive training (running, daily sauna exposure, strength workouts, etc.), preparation, planning, scheduling, and crew logistics,” said Ken. Race organizers tweeted that road surface temperatures had reached 178 degrees with air temperatures reaching 130. “Knowing that I had a lot of donors who had supported the MS Society was a big motivator to push on. Remembering that there are people with MS who would have traded places with me in a heartbeat helped me to appreciate the gift of being able to take part in an event like this.” Ken placed seventh overall. The next time you are preparing for a competition, consider raising money to help create a world free of MS. Go online to www.RacetoStopMS.org to register your event, start a fundraising page, and access tools to help you succeed. ◊

YOU DON’T HAVE TO BE A RUNNER TO BE A ROCKSTAR.

Ken and his amazing entourage surpassed their original goal of $2,000 and raised $11,695! A close family member with MS was Ken’s motivation. “I ran because I chose to; having that choice is not an option that everyone gets,” said Ken. Like MS, Badwater is grueling. “Badwater takes an excessive amount of time and effort

LEARN MORE OR REGISTER TODAY AT MSROCKSTARS.COM

14 ... continued from page 5 been made in Washington and Sacramento and there will be many more to come. In general, the changes that are being made are beneficial for people who are living with chronic conditions such as MS. Please join the Northern California Chapter for the teleconference Affordable Care Act: Key Provisions for People with MS on Thursday, October 3rd from 6:30 - 7:30 p.m. Register at www.nationalMSsociety.org/can or call 800-344-4867. ◊ __________________________________ Thank you to Micah Weinberg, CEO of Healthy Systems Project, a Sacramento-based healthcare consultancy, for his contribution to this article.

NOW: AN MS RESEARCH REVOLUTION The National MS Society recognizes that while much progress has been made in research, much more is needed. In response the Society has committed to invest $250 million in MS research, and it will take each and every one of us to make sure we reach our goal. NOW. No Opportunity Wasted. To move toward a world free of MS, the Society provides grant funding, tools and information resources to support the brightest scientists and physicians exploring questions underlying MS. The following are highlights of progress being made.

MS CONNECTION: FALL 2013

RESOURCES TO BETTER UNDERSTAND THE AFFORABLE CARE ACT • Visit www.healthcare.gov for a

comprehensive listing of all aspects of health care reform.

• Visit www.coveredca.com for fact sheets

and FAQs which can be found on the About Us, Coverage and Resources pages.

• Contact the service center for Covered

California at 888-975-1142.

• Visit the National MS Society online at

www.nationalMSsociety.org/ACAkickin with links to helpful resources, new Society Fact Sheets and more.

STOPPING MS

Progressive MS: A study of an oral bloodpressure medicine, Amiloride, found a reduction of brain shrinkage associated with the disease in 14 people with primaryprogressive MS. Researchers in a large trial of Gilenya for primary-progressive MS reported good progress in setting up the trial. MS Therapies: Results of a study on peginterferon beta-1a (a new form of Avonex) designed to stay in the body longer than the standard form suggest that peginterferon injected every two or four weeks was effective in reducing relapse rates and the risk of progression of disability. Another one-year phase III trial found that injections of twice the standard dose of Copaxone taken three

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NATIONALMSSOCIETY.ORG/CAN | 1-800-344-4867

times per week were effective in reducing relapses and MRI-detected disease activity, with no unexpected safety issues. A study found that among 200 people who switched from Tysabri to Gilenya, 32% experienced a relapse during the “washout” interval of 3 to 6 months when no therapy was given. The researchers concluded that switching increases the likelihood of disease reactivation and that the washout period should not be longer than 3 months. Results of two phase III trials of oral Tecfidera suggest that the treatment begins to take full effect after three months’ use. Exploring disease activity: A study on whether vaccinations can trigger MS attacks found that yellow fever vaccines may substantially increase the risk of MS relapse. A study in Louisiana found that people with higher levels of glucose were more likely to have higher levels of disability.

RESTORING FUNCTION

A study on CCSVI did not find a significant difference between 61 people with MS and 20 people without MS when technicians trained in CCSVI assessment used various ultrasound techniques to detect the condition. The first results of another study of controlled endovascular treatment at six months found no adverse events, but also no sustained improvement in venous outflow.

ENDING THE DISEASE FOREVER

Several reports focused on risk factors for MS, including one indicating that dietary salt may stimulate activity of key immune cells involved in MS attacks.

LOCAL MS RESEARCH

Last year the Society invested more than $44 million in a diverse portfolio of research projects, fellowships and strategic initiatives. Currently, the Society invests almost $12 million in critical MS research initiatives locally at J. David Gladstone Institutes, Stanford, UC Davis, UC Berkeley and UCSF such as the following: • Ben Barres, MD, Ph.D. of Stanford is

researching how myelin is made with the goal of finding ways to repair damaged myelin in people with MS. Amount funded: $505,936. • Lawrence Steinman, MD of Stanford is attempting to predict who will respond to treatment with interferon beta. Amount funded: $510,975. • Dirk Baumjohann, Ph.D. of UCSF is researching the function of immune cells in MS-like disease for clues to developing new treatments to stop MS. Amount funded: $175,804. Learn more about MS research online at www.nationalMSsociety.org/research. ◊

Northern California Chapter 1700 Owens Street, Suite 190 San Francisco, CA 94158

DIY FUNDRAISING EVENT IMPROVES QUALITY OF LIFE In 2009, two Northern California Chapter volunteers, Doug Thomas and Mat Rossman, created a Do It Yourself (DIY) fundraising event called The Terry Rossman MSGolfexperience. The purpose of this event, held in honor of Mat’s late wife, Terry, is to fund a service at the Chapter called Terry’s Closet and to honor the memory of Terry’s battle to end MS.

TERRY ROSSMAN

Terry’s Closet helps provide assistance for the cost of durable medical equipment for people living with MS who cannot afford the insurance copayments on prescribed equipment or do not have insurance that covers their equipment needs. This program was developed to bring meaningful financial assistance to as many people living with MS as possible, with an emphasis on helping people maintain their independence, safety, health and quality of life.

This year, The MSGolfexperience raised $11,600, bringing the total contribution to more than $35,800 over the last five years. To learn more about Terry’s Closet, call the National MS Society at 800-344-4867. To donate or play in next year’s golf tournament, visit www.msgolfexperience.com. To learn how you can host a DIY fundraising event and find tools and resources to help you, visit the Fundraising Events page at www.nationalMSsociety.org/can. ◊


Fall 2013 ms connection all areas