A Conversation With a Huntington’s Advocate About the HD Parity Act

My wife, Jill, has known of Jennifer Simpson, the assistant director of youth and community services at the Huntington’s Disease Society of America, for several months now. Jill first saw her in several YouTube videos on topics related to Huntington’s disease (HD) and was then part of a virtual “fly-in” that Jennifer led in mid-May with a senator’s office to lobby for the HD Parity Act.

Jill found her to be dedicated, thoughtful, and smart, so she suggested we reach out and ask Jennifer about the HD Parity Act. Because I like to keep Jill happy — “happy wife, happy life” — I asked Jennifer several questions via email. Excerpts of our conversation follow, with light editing for clarity.

CB: You’ve been working on getting support from Congress for the HD Parity Act. Can you explain what the act is?

JS: The HD Parity Act would waive the current two-year waiting period for folks on Social Security Disability Insurance [SSDI] with HD to access Medicare and waive the additional five-month benefit wait period for folks with HD who are approved for SSDI. When we pass the HD Parity Act, it means that if you are approved for SSDI, and you have HD, all of your benefits would kick in immediately.

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What have you been working on to get it passed?

A big question! We’ve been working on it from three major angles: grassroots engagement, “grasstops” engagement, and ally engagement. Grassroots engagement is making sure everyone impacted by HD across the U.S. is reaching out to their members of Congress to talk about the HD Parity Act. It can be as simple as going to [the HDSA Action Center] and sending a message there, or working with myself and our HD Advocacy Caucus and taking meetings with staff from your members of Congress’ office to talk about HD and the HD Parity Act.

“Grasstops” engagement is working with folks connected to HD who have strategic relationships to people in power who can help move the needle on legislation like the HD Parity Act. Engagement of allies [means] engaging folks like our partners in pharma and biotech to use their influence to advocate for legislation and regulations that will help those in the HD community.

How big of a difference will the act – if it is passed – make in people’s lives?

The reason why we’ve been pushing this legislation for so long is because it will fix a major hole in care that folks with HD face, where they have to scramble to piece together health insurance, access to care, and do it when they’re already under a lot of stress. When that two-year waiting period happens, folks with HD aren’t in a place where they are able to work anymore, and the system that’s been put in place to help them is causing additional burden and pain.

HD is a disease that throws a lot of burdens onto individuals and families, and passing this bill will remove one major burden that only the federal government can take away. Then, we can move on to continuing to look at how, through legislation or regulation, we can remove the other burdens that HD families face.

Why has it been so difficult to get this passed if the ALS Parity Act has already passed?

Passing legislation is a tricky business, especially at the federal level. It requires all those pieces coming together at the right time, and it requires those in power to act on the advocacy we put forward.

We know that ALS is a well-known disease in Congress. There are former high-level congressional staffers who have developed ALS, and, as a result, are able to influence the process on a very personal level, which is fantastic for the ALS community, and it means that important legislation has been passed that needed to be passed for folks impacted by ALS.

For us to see the same result, we need to raise our voices as loudly as we can, and in unison, for legislation to pass. We need to be visible. We need to tell the story of HD, the ways which HD impacts us, those we love, and our families. We know that the burden of HD makes that hard, so we need to share these stories with those around us, our friends, our [unaffected] family, our faith communities, and make this disease visible.

What can readers do to get the HD Parity Act passed?

You can go to [the HDSA Action Center] and send a message. Send one today, send one next week, and keep sending one until this bill is passed. You can also talk to your community about HD and ask them to do the same. Ask them to help us; ask them to join the fight against HD and the fight to pass the HD Parity Act.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.