Activism now! 2009 public policy priorities for the National MS Society.

In this era of bank failures and Wall Street meltdowns, where costs and oversight are front-and-center, the National MS Society continues to allocate valuable staff and financial resources to advocate for funding and legislation to better the lives of people with MS and move us to a cure. The concept is disarmingly simple. What's involved in bringing these efforts to fruition can be remarkably complex.

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Pragmatic analysis ...

"Our goal is to help address unmet needs within the MS community," said Shawn O'Neail, vice president for Federal Government Relations at the Society.

To determine priorities, the Society works closely with its Federal Activism Council, a diverse group of stakeholders including people with MS, caregivers, medical and research professionals and Society leadership. Choices are driven both by needs and by knowing what's possible. Society staffers continuously confer with our federal champions and allies to get a sense of what's achievable. n this era of bank failures and Wall Street meltdowns, where costs and oversight are front-and-center, the National MS Society continues to allocate valuable staff and financial resources to advocate for funding and legislation to better the lives of people with MS and move us to what's possible. Society staffers continuously confer with our federal champions and allies With a new administration in the White House, and many changes on Capitol Hill, what is the Society working on now? And how will these priority issues make a difference?

Comprehensive health care reform

Last year, zooming ahead of the curve, a Society task force developed a seven-point position paper on health-care reform. The principles were approved by the Board of Directors in May, 2008. Now, as a new administration and a new Congress take charge in Washington, there are opportunities to put the principles into action.

Even in the midst of our huge economic crisis, this nation spends more on health care per person than any other country, yet nearly 50 million of us have no insurance, millions of others are under-insured, and people living with chronic diseases are particularly disadvantaged. We believe these principles will help the nation--both the ill and the healthy.

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1. Health coverage should be accessible to all, regardless of disability, claims history, risk or other qualifiers.

2. Coverage and services should be affordable to all, with out-of-pocket costs limited to prevent financial devastation to those who need the most care.

3. Coverage of specific treatments should be based on "medically necessary" standards even if improvement of a condition is not expected.

4. Disparities in care should be eliminated. For people with disabilities this means having accessible facilities, equipment, and transportation--and the use of "telemedicine" and other technologies to bridge gaps.

5. Comprehensive quality health care should be available with a full spectrum of timely services throughout a person's life.

6. The value of care should be increased through universal electronic medical record systems and increased emphasis on prevention. Technology can reduce administrative expenses, halt waste, fraud, and abuse and make education and support for healthy choices widely available.

7. People should have access to high-quality long-term care services in settings that best meet their needs.

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Getting there

Many approaches to implementing these principles are already in the works. The Society is giving top priority to the following initiatives. already in the works. The Society is giving top priority to the following initiatives.

Eliminating Medicare's 24-month waiting period

An estimated 1.5 million individuals with MS or other conditions live with disabilities so severe that they cannot work. They qualify for Social Security Disability benefits because they have a work history and paid into the Social Security program. But currently they must wait two years to receive any health care coverage through Medicare. The consequences can be devastating.

Jeff Rubin, now 41, was diagnosed with MS early in 2006 and shortly thereafter was not able to work as a tax accountant. In December of that year, he was officially granted "disabled" status. Rubin had been the family breadwinner so his wife could stay at home with their four children. With no medical insurance, and the 24-month waiting period before Medicare coverage would start, Rubin began paying for treatments and medications using his credit cards. Then he borrowed from friends. Finally, he stopped getting prescriptions filled. In the end, the family lost their home and had to declare bankruptcy.

During this 24-month waiting period, already sick and vulnerable individuals often lose their health insurance. They are not able to afford COBRA coverage and cannot obtain other private insurance to cover their condition. Many forgo treatments, stop medications and therapy, and further compromise their health. Many, like Rubin, accumulate staggering health care-related debt, risking foreclosure and bankruptcy.

"It's counterintuitive that someone can be found disabled, not be able to work and still have to wait two years to qualify for medical assistance," Rubin said. "Being disabled means that a person is ill and needs medical coverage. How do you separate the two?"

The National MS Society and health-care advocates nationwide support ending the Medicare disability waiting period.

Eliminating limitations on therapies

In the world of insurance, physical therapy (PT), occupational therapy (OT), and speech and cognitive therapy should have a start point, an end point, and be "curative." For tennis elbow or hip replacement, this requirement makes sense. For MS, it does not. As those who have MS know, these therapies help stave off decline, but they do not cure. Even when they don't produce measurable improvements, they can be essential for maintaining function and independence.

For Patty Bobryk, a PT at the MS Comprehensive Care Center of Central Florida, helping people with MS maximize their coverage for therapy is becoming increasingly challenging.

"For our patients on Medicare, we need to document significant functional gains every 30 days," Bobryk related. "While PT is clearly fundamental in maintaining function in MS, it is not always possible to show improvement."

Barbara Monaco has been seeing Bobryk for many years. Diagnosed in 1986, she is now 61 years old and continues to be covered under private insurance through her husband's employer.

"Our current policy allows me 30 visits per ailment--MS being considered one ailment," she explained wryly. "I've learned that I need a new diagnosis in order to qualify for any more sessions with Patty." So, after falling from her wheelchair and fracturing her leg, she qualified for 16 more visits. Later she started having Botox injections to ease spasticity, thus qualifying her for 60 additional PT visits. Monaco marvels at the absurdities involved in getting the help she needs. Here's another: because of rising insurance costs, her husband's employer has switched carriers every few years.

"It works for me because with each switch, my PT coverage starts all over again!"

The National MS Society is strongly supporting legislation that will provide a permanent lifting of the therapy caps currently existing in Medicare.There has been an exception process for exceeding the caps under Medicare, but that provision has had to be passed again each year. Lifting the caps permanently would not affect Barbara Monaco as she has private health coverage. However, private insurers typically follow Medicare's lead so in time, a change in Medicare might bring her some relief.

Medicare reform--filling the donut hole

The Medicare coverage gap or "donut hole" for prescription drugs is another critical issue. Once an individual qualifies for Medicare benefits, there is an annual deductible as well as a 25% co-pay for all prescription medications up to a ceiling, currently $2,700. Then a coverage gap ensues, in which there is no Medicare coverage and the individual is responsible for all costs. This gap is referred to as the "donut hole." When total drug costs reach another benchmark (currently $6,154), "catastrophic coverage" begins and the individual pays only 5% of all drug costs.

Both the co-pays and the donut hole can leave people with MS in a difficult position. This is precisely what happened to Kirsis Gonzalez.

Now 49, Gonzalez was diagnosed with MS 13 years ago and has been taking Avonex for the past 10. Until 2006, when her condition forced her to resign from her job, she was covered under a private insurance plan through her employer. When she qualified for Medicare, she found that she couldn't afford her Avonex because of the high co-pays--approximately $400 in the first month--and because she'd be in the donut hole by the end of the second month. Medicare beneficiaries like Gonzalez who require high-cost maintenance prescriptions need continuous coverage now. The National MS Society supports elimination of the Medicare coverage gap.

Making MS medications more affordable

Breakthrough disease-modifying drugs have made an incredible difference for many living with MS. However their high costs keep them out of reach of some who could benefit.

Back in 1984, legislation was passed that allowed the development of lower-priced generic pharmaceuticals. While this legislation was a tremendous victory for consumers in terms of affordable medications, this older law doesn't apply to biologic drugs--drugs that are made by living organisms, as all the newer MS therapies are. Thus there is no generic competition in this fast-growing and expensive category of drugs, even after all patents have expired.

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The National MS Society supports legislation that would provide the FDA with the ability to approve safe, effective, lower-cost versions of biologic drugs, known as follow-ons, while preserving a period of fair-market exclusivity to reward innovators and researchers.

Supporting stem-cell research

In 2005 the Society convened a task force on stem-cell research that included volunteers, people with MS, researchers, MS neurologists and staff. They heard presentations by bioethicists, stem-cell researchers and legal and regulatory experts, and they concluded that stem-cell research does in fact hold great promise for speeding a cure for MS.

Under current law, human embryonic stem-cell research in the U.S. can only be conducted using stem cell lines derived before August 9, 2001. Newer legislation lifted that restriction in order to make more cell lines available for American researchers. The Society supported the Stem Cell Research Enhancement Act of 2007, which passed both houses of Congress with significant bipartisan support. President Bush issued a veto on June 20, 2007. This year, the Society will work in coalition with many other groups to overturn restrictions on embryonic stem-cell research, either administratively or through legislative action.

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Lifting lifetime caps on health-care coverage

A $1 million lifetime cap, at first blush, sounds like a more than sufficient sum. It's not. When you consider the rising costs of MS therapy and care, the development of high-tech equipment and the fact that MS typically requires care over many decades, reaching that million dollar limit is very possible. Add a diagnosis of another disease on top of MS and the cap can be reached even sooner.

The National MS Society supports legislation to completely lift lifetime caps on much healthcare coverage for people with MS and other chronic conditions.

Increasing federal research funding

The National Institutes of Health (NIH) conducts and sponsors the majority of MS research in the U.S. and has contributed significantly to the development of the MS therapies now on the market. Generous investment in medical research was long a hallmark of federal policy and has been credited with sparking huge improvements in care, prevention and treatment of many diseases.

In 2006, NIH provided $110 million for MS research. In 2007, that number slipped to $109 million. At press time, projections for 2008 showed approximately $97 million had been allocated. The National MS Society encourages Congress Lifting lifetime caps on health-care coverage to fully support funding for the NIH. Federal investment in research will result in better treatments, more effective and efficient diagnostic and monitoring tools, and improved rehabilitation to manage MS symptoms.

Moving together to make a difference

The next time you are tempted to ask yourself--But what can I do? I'm just one person--consider the historic $5 million for MS research that MS activists across the country just helped to secure from CDMRP. A few years ago, who in the MS movement even knew what CDMRP was, let alone that it could help?

The Society's Web site is an invaluable tool for keeping up with current advocacy efforts. Go to nationalMSsociety.org. Click Government Affairs and Advocacy on the gray navigation bar at the top.

Get the full text of the Society's National Health Care Reform Principles and review our summary of federal policy priorities. Our Web site will have the latest updates on key issues, which participants in this year's Public Policy Conference will use in their visits to Congressional legislators.

For state and local issues, go to Find A Chapter on the top of the national home page, access the Web site of the chapter nearest you, and explore Advocacy. Or call 1-800-344-4867 and ask your chapter about its Government Relations Committee.

Working together, we do make a difference!

Prospects for Public Policy in 2009

"The MS movement has a standing it has never before enjoyed," said David Chatel, executive vice president for Advocacy Programs. "President Obama and his wife, Michelle, are personally aware of the challenges to people living with chronic disease. Both have spoken movingly about Michelle Obama's father and his MS. We are eager to work with this new administration in developing health policies that will benefit the whole nation. I believe our voices will be heard."

On March 9, MS activists from all over the country will convene in the nation's capital to take action on our issues by visiting their legislators.

For information about becoming an activist at home, all year long, call us at 1-800-344-4867.

The first lady on living with MS

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Michelle Obama spoke movingly about her father in her speech at the Democratic National Convention last year:

"My dad was our rock. And although he was diagnosed with multiple sclerosis in his early thirties, he was our provider.... But as he got sicker, it got harder for him to walk.

Took him longer to get dressed in the morning. But if he was in pain, he never let on. He never stopped smiling and laughing, even while struggling to button his shirt."

To view the entire speech, go to youtube.com and type in "Michelle Obama DNC" in the search field.

Two big wins in 2008

Society advocacy is often a juggling act of political and budgetary moving targets, but time and again it results in remarkable achievements. This was clearly demonstrated last fall.

* Passage of the ADA Amendments Act of 2008 which restored and clarified the intent of the original 1990 legislation to provide protections for people with disabilities in transportation, telecommunications, employment, and access to public facilities.

* $5 million for new MS research which was awarded through the Defense Department's Congressionally Directed Medical Research Programs (CDMRP).

In typical grass roots fashion, MS activists began work obtaining CDMRP funding back in 2006. Having collected more than 100,000 signatures and participated in hundreds of meetings, they achieved a win for MS research in a time when federal dollars for this purpose have been in steep decline.

Katherine Shaw is a freelance writer based in Portland, Oregon. She was diagnosed with MS 10 years ago and most recently wrote about the Americans with Disabilities Act in the Fall 2008 issue of Momentum.