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Letter to the Senate: Protect Affordable and Accessible Health Care

Letter to the Senate: Protect Affordable and Accessible Health Care

The Michael J. Fox Foundation (MJFF) continues to advocate for access to prescription drugs and to promote our health care principles on behalf of the Parkinson's community. On September 20, 2017, Ted Thompson, JD, the Foundation's Senior Vice President of Public Policy, wrote a letter that was sent to all senators regarding consideration of the new health care legislation, the Graham-Cassidy-Heller-Johnson (GCHJ) proposal. This latest proposal could do lasting damage to the health care system, and access to and affordability of health care for people with Parkinson's disease and all pre-existing conditions. The full letter is below.

Act now and make your voice heard. Write an email to your senator now and follow up with a call.


September 20, 2017

Dear Senator,

On behalf of The Michael J. Fox Foundation for Parkinson's Research (MJFF), I write to express serious concerns regarding key provisions of the Graham-Cassidy-Heller-Johnson (GCHJ) health care proposal and its impact on people with Parkinson's disease (PD). I strongly urge you to oppose this damaging proposal and, instead, work toward a new, bipartisan approach to health care reform that stabilizes markets, addresses problems in current law, and truly meets the needs of patients.

It is estimated that between 750,000 and 1 million people in the United States have Parkinson's disease, with an annual economic burden of between $19.8 and $26.4 billion. As the world's largest nonprofit funder of PD research, MJFF is dedicated to accelerating a cure for Parkinson's and developing improved therapies for those living with the disease today. In providing more than $750 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure.

As you carefully weigh your decision regarding the Graham-Cassidy-Heller-Johnson health care proposal, please consider the detrimental impact of the legislation on the most vulnerable Americans. Of particular concern to the Parkinson's community are the proposal's modifications regarding:

  • Pre-existing condition discrimination/Waivers to essential health benefits. The GCHJ proposal permits states, through waivers, to eliminate coverage for the essential health benefits currently mandated by the Affordable Care Act. This would allow states to erode coverage for individuals with pre-existing conditions and subject them to increased costs, as well as annual and lifetime caps. Chronic disease management is part of what is considered an essential health benefit. The proposal provides significant and nearly unrestricted flexibility to states by requiring those seeking waivers to only explain the manner in which they intend to maintain access to adequate and affordable coverage for individual's with pre-existing conditions. There is, however, no requirement that states demonstrate whether or not it is realistic or possible for such access to be maintained. The net consequence of these waivers would be that individuals' protection against discrimination and access to the essential health benefits will depend entirely upon the state in which he or she lives, and the protections afforded by each state. This is a dangerous and costly result for individuals with PD. 
  • Discrimination based on health status. Currently, the Affordable Care Act prohibits the use of actual or expected health status when setting group premiums. This practice, known as Community Rating, protects individuals with pre-existing conditions by ensuring that premiums offered by insurance providers are the same for all individuals within a specified geographic territory. The GCHJ health care proposal would allow states to waive this prohibition and permit insurers to charge higher premiums to individuals based on health status. Without the safeguards against community rating provided by the Affordable Care Act, premiums based on health status for individuals with pre-existing conditions or higher than average health care costs would skyrocket and price these individuals out of the market. 
  • Repeal of Medicaid Expansion. The GCHJ healthcare proposal would repeal the authority to cover adults through the Medicaid expansion immediately for non-expansion states and by 2020.For expansion states, repeal the enhanced Federal Medical Assistance Percentage for the Medicaid expansion that currently covers 15 million adults, and make significant cuts to traditional Medicaid. Furthermore, the proposal would create capped block grants that combine federal funds for the Medicaid expansion, cost-sharing subsidies, and Basic Health Programs for low-income residents that would be lower than current spending and would require states to limit coverage. These block grants would maintain the aforementioned federal funding through 2026, with no indication regarding funding after that date. Currently, up to one-third of the Parkinson's community are dually eligible for both Medicare and Medicaid, leaving this population particularly vulnerable to the impact of the allocation of scarce resources by state Medicaid programs. In addition, the GCHJ health care proposal allows states to require beneficiaries to re-certify their eligibility for Medicaid every six months. This requirement would be overly burdensome. Individual's with Parkinson's who are on Medicaid due to disability do not one day lose their disability. The disability status is permanent. Requiring recertification with such frequency is cruel and appears to be a mechanism to dissuade people from accessing this important program.

As you consider the Graham-Cassidy-Heller-Johnson health care proposal, I urge you to reconsider many of these problematic provisions. Our shared goal of better health care coverage at lower costs for all Americans is ultimately attainable, but the GCHJ proposal does not take us in that direction. Rather, it would move us to a system with lower quality coverage options and no guarantee that every American has access to affordable health care insurance.

On behalf of the 750,000 to 1 million Americans with Parkinson's disease, I strongly urge you to oppose this damaging proposal, and again, encourage you to work in a bipartisan manner to develop reforms to our health care system based on regular order; expert analysis; and patient, caregiver, provider and industry input, that truly meets the needs of the patient.


Ted Thompson, JD
Senior Vice President of Public Policy

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