With the HD Parity Act stalled, is it time to shift gears?
It's been over a decade since the vital bill was proposed, to no avail
My wife, Jill, is generally an optimist. But lately, I’ve seen frustration cloud her eyes. It’s not just the daily battles we fight together against Huntington’s disease (HD). Those are struggles we’ve learned to face, one day at a time. This frustration is tied to something bigger: the Huntington’s Disease Parity Act, a cause Jill’s family has championed for years.
For more than 13 years, the dedicated people in the HD community have poured their hearts into getting this legislation passed. The bill’s goal is straightforward and vital: to eliminate the two-year waiting period for Medicare and the five-month waiting period for Social Security Disability Insurance (SSDI) for people with HD. These waiting periods are devastating for those in the most critical stages of the disease, delaying care when it’s needed most.
Despite countless meetings, petitions, and advocacy campaigns, the bill has repeatedly stalled in Congress. Jill has always wholeheartedly supported the cause, but recently, she voiced something I hadn’t heard her say before: “What if our community’s time and energy could be better spent elsewhere?”
Focusing on results
Her concern is rooted in political reality. Convincing lawmakers to invest their limited political capital in a bill for a rare disease — one that costs money and serves a small constituency — is an uphill battle. It’s not that we don’t believe in the cause. We do. But after more than a decade of disappointment, we’re left wondering: Is there a better way to help the HD community?
One of Jill’s ideas struck a chord with me. Instead of focusing so heavily on the HD Parity Act, what if we shifted all of our efforts toward more immediate, actionable changes?
Jill believes the community could benefit if advocacy groups partnered with healthcare professionals to educate clinicians about writing appointment notes that fully support patients’ SSDI applications. She also thinks it would be invaluable to provide HD families with guidance on how to review and collect the medical information needed to support their applications.
Many HD patients and families struggle with the complex paperwork required to prove eligibility, and notes that lack detail or fail to explain functional limitations can mean the difference between approval and rejection. While streamlining this process may not eliminate the Medicare waiting period, it could help patients access disability benefits more quickly.
She emphasized the importance of expanding investment in education and research — not only to develop new treatments or a cure, but also to discover effective strategies that help gene-positive people delay the onset of symptoms and slow disease progression. There remains much to uncover about how lifestyle choices, medications, and other therapies can influence the course of HD. Advancing research in these areas holds the potential for immediate and transformative benefits for those affected.
And then there’s the wider medical community itself. Too often, patients and caregivers must advocate for themselves because many doctors lack a deep understanding of HD. By pushing for better education, more training, and greater awareness among the entire community of healthcare providers, we could create a ripple effect that improves care for everyone living with the disease.
Let me be clear: My wife and I are deeply grateful to everyone who has fought for the HD Parity Act. Their passion and dedication have united our community and reminded us of the power of collective action. But after all these years, we can’t ignore the question: Is it time to pivot? Could we channel our energy into initiatives that yield quicker, more tangible results?
For Jill, this isn’t about giving up — it’s about evolving. The HD Parity Act could help many people, but it’s not the only way to create meaningful change for the HD community. Maybe it’s time for a new approach.
We don’t have all the answers. But we do know this: Our community deserves better; better care, better understanding, and better research. It’s time to ask not just what we’re fighting for, but how we’re fighting. By shifting our focus, perhaps we can find new ways to help Jill — and everyone living with Huntington’s — live fuller, healthier lives.
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.
About the Author
Jeannine Wheeler
All information is useful as we have many family members with Huntings. Thank you for any and all useful information regarding Huntington's Disease
Alan A. Pfeffer
Carlos I just did a search on the Congressional web page. The HD parity act has not even been introduced this year. How do you suppose I feel since I was the first person back in 2009-10 to work with Sen Gillibrand staff to get her to be the sponsor in the Senate. That was the first time it was introduced in the Senate. Before that it was only a House Bill. Similarly it was not introduced last year either. BTW today marks a year since my daughter Charise left us. I have written a Memoir "CHARISE, A MEMOIR AND POETRY OF A WOMAN WITH HUNTINGTON’S DISEASE AND HOW SHE CHANGED THE WORLD". Large section on her Peace Corps experience changing lives of children in Turkmenistan. Now looking for a publisher.
Patricia Huffman
Yes. Our HDSA advocacy group is focused on bills introduced in119th Congress and some yet to be introduced. These bill are fall in to categories the HD when surveyed said were most important. Check out HDSA advocacy page , look at past Advocacy in action monthly newsletters and subscribe to future mailings. Carlos we ask people to do as much as each feels they can. I can share more info directly. Email me.