Advocacy Slide2
Issue Background

Tell Congress: Pass the Huntington's Disease Parity Act

What Can I Do?

Step 1: Send a message to your Members of Congress about the HD Parity Act by clicking HERE

Step 2: Go to the Resources & Action Center to check out where to start as an advocate for the HD Parity Act 

Step 3: Join the HD Advocacy Caucus! If you're ready to get engaged and have the time and energy to dedicate to being an active advocate, the HD Advocacy Caucus is where you want to be. 

The HD Community had a huge win with the recent updates to the Social Security Disability guidelines for Huntington's disease. But, we still have to wait two years to access Medicare. 

Medicare Benefits

Medicare’s two year waiting period is particularly devastating for people with HD.  Once a person with HD is finally deemed eligible for SSD benefits, they are forced to wait two years to receive Medicare benefits.  During the two year wait, HD’s destructive impact cognitively and physically robs the person of their ability to live independently.




Who are our Champions? 


In the Senate, we have two Senators who lead our bill: 

  • Senator Kirsten Gillibrand (D-NY)
  • Senator Bill Cassidy (R-LA)


In the House, we have two Representatives who lead our bill: 

  • Rep. Adam Kinzinger (R-IL16)
  • Rep. Bill Pascrell (D-NJ9)


Each bill that is introduced in the House and Senate is forwarded to a committee, and subcommittees within that committee, who oversee the issues germane to the bill introduced. For the HD Parity Act, our bill sits in one committee in the Senate and one in the House: 


HOUSE: Ways & Means Committee (click to find out more about W&M)

SENATE: Finance Committee (click to find out more about Senate Finance)