Living With HD
- HD Care
- HDSA Advocates in Action: Voices of HD
- Feedback Form
- HDSA Advocacy Video Contest (2012)
- Medicare Improvement Standard: JIMMO
- HDSA Comments on Proposed SSA Neurological Listings
- Community Services
- Annual Convention
- HDSA Forum
Why are you an HDSA Advocate?
It is critical for medical professionals to be involved in advocacy for HD. Having a medical professional meeting with legislators and echoing the stories of HD patients and their families and caregivers gives the legislators a different understanding of the challenges HD patients face, and the limitations that we have in caring for them in the medical, legal, and social realms. It also gives the medical profession a direct voice at the table at a critical time in the evolution of health care in the US. As the old adage goes, if you're not at the table then you're on the menu. I feel it is imperative for the medical profession to strongly and consistently advocate for our HD patients as another extension of our attempt to care for them and help be their voice at the table.
What special perspective do you bring to advocacy and why is this perspective important?
I bring the perspective of being involved in the science and medicine of HD, which in turn helps me communicate with legislators about the significant challenges we face in understanding and treating the disease. This helps inform the discussion about what new research avenues are exciting and important to support, what new therapies need to be supported, and what present and future challenges to understanding and treating HD need to be met and supported at the legislative level. I think this serves as an important complement the stories that HD patients and their families and caregivers provide.
What is the most rewarding part about advocacy?
Knowing that, although I have limited options as a researcher and doctor in understanding and treating patients with HD, I still have an important other option in caring for them--by advocating for HD patients and their families and caregivers. It takes more than a pill to care for patients with HD, and we must meet that challenge.
Why do you think it’s important for others to get involved?
I think it is critical for all medical professionals engaged with HD to get involved. There is more power in numbers than people understand when it comes to interacting with the legislature, but I've also been impressed with how much of an impact one voice can have in moving legislators to act. You never know which legislator will be so moved, so it makes sense to knock on as many doors as possible and that can only be done with as many medical professionals as possible engaged in the process.
Get involved! Become an HDSA E-Advocate at www.hdsa.org/join