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MSA Coalition Advocacy Agenda

The MSA Coalition is commited to advocating and advancing key legislative issues that affect the multiple system atrophy community. By utilizing our unique position as the voice of the MSA patient, care partner, and researcher, we will inform, influence, and positively impact legislation that advances our mission and vision.

We will focus on four major areas of public policy.

1. Eliminating Barriers to Medicare Access and Federal Benefits

There are two barriers for MSA patients to receive financial support through the federal government. The first is the five-month waiting period from the date of approval in order to receive Social Security Disability Insurance (SSDI) benefits. The second is the additional 24-month waiting period for MSA patients under 65 to become eligible for Medicare. The two waiting periods are incredibly detrimental to a patient population such as MSA as the financial hardships, rapid disease progression, and support required to provide necessary care are extraordinary. We will advocate to end both waiting periods for MSA patients to advance care and access and relieve the financial burden for MSA patients and families.

2. Care Partner Support

The MSA Coalition is a strong advocate for providing resources to individuals who serve as care partners for MSA patients. As MSA progresses, many patients may require considerable assistance with their normal daily activities as well as coordination of health care and administration of complicated medication regimens. Caregiving, which usually falls to a relative, takes a considerable emotional, physical, and financial toll, often leading to the care partner’s own health-related implications. Increased support services and financial relief for family caregivers are necessary to ensure quality of life for both care partners and people living with MSA.

3. Research Funding

The federal government provides more medical research support than any other entity. It is critical that there is significant funding available for multiple system atrophy research in order to beter understand the disease, improve diagnostics, enhance treatments, and ultimately find a cure.

The National Plan to End Parkinson’s Act, is a no-cost bill that will create an advisory council comprising members of federal agencies that support research, care, and services for Parkinson’s, along with caregivers, patients, and other non-federal experts. This group will create a strategic framework towards ending Parkinson’s and atypical Parkinsonisms, including MSA. We know this strategy will require financial support and we stand ready to advocate to elected officials about the lives that will be positively impacted by curing this disease.

4. Access to Care

Access to multi-disciplinary healthcare professionals and affordable treatments is paramount for MSA patient care and quality of life. Resources such as comprehensive care, accessible and affordable healthcare insurance and prescriptions, telehealth, and access to healthcare across state lines can significantly enhance patient care and care partner well-being.

We will advocate to advance equitable access to quality healthcare for all people regardless of race/ethnicity, sex, gender identity, sexual orientation, disability status, or country of origin, etc.

A Brief Summary of Social Security Disability Benefits (SSDI) and the Two Year Medicare Waiting Period

Federal Disability Benefits

  • Under current federal law, individuals are entitled to Social Security Disability Benefits (SSDI) if:
    • they become disabled due to a medical condition that is expected to last at least one year or result in death
    • meet certain work history requirements (such as paying Social Security taxes on their earnings.)
  • Multiple System Atrophy (MSA) is on the Compassionate Allowances list, which streamlines the SSDI application process and reduces the standard waiting time for a decision, which may take months

Two Year Medicare Waiting Period Overview

  • Medicare is health insurance provided by the federal government for people 65 and older.
  • If you are under 65 and receive SSDI benefits, you automatically become eligible for Medicare after two years on SSDI – this is what is referenced as the Two Year Waiting Period. If you turn 65 during this Two Year Waiting Period, you are immediately eligible to receive Medicare benefits.
  • There are currently only two exceptions to this two-year waiting period: (1) patients with end-stage renal failure, and (2) patients with ALS (Lou Gehrig’s Disease.) In other words, patients with those diseases receive Medicare as soon as they are eligible for SSDI without any waiting period.