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
- NYA Capitol Hill Takeover 2.0
- Eating Congress for Lunch
- Community Services
- Annual Convention
Meet Suzanne Imbriglio, PT
Suzanne Imbriglio, PT
Why are you an HDSA advocate?
As a 20 + year member of the HDSA, I have seen the organization grow from a small grass roots operation, to the nationally recognized organization that it is today. The journey has not been without struggle, and the road continues to be long and hard, but HDSA is a vital part of who I am as a professional caregiver.
How did you start advocating?
I have been caring for people with HD for the better part of my 35 year career as a physical therapist. I have come to know first hand the struggles that families and people with HD face as they try to access quality health care. I became an HDSA advocate in the early 1990’s when people with chronic illnesses such as HD, were denied therapy. I spoke to anyone who would listen about the importance of physical therapy for people with HD. I taught therapists how to write letters of necessity so that insurance companies would pay for services. I taught patients to speak up and tell their physicians of the benefits of PT. I spoke with medical reviewers on behalf of patients, educating them on the benefits of therapeutic intervention both for the short and long term. I had a soap box, and I was on it often.
What is the most rewarding part about advocacy?
The delivery of health care continues to change. The rules for payment of therapy services keep changing. But, the need for services continues to be ever so great. When people with HD tell me how much better they are doing after having a course of therapeutic intervention- physical therapy, occupational therapy or speech therapy, I know that my efforts have been worthwhile. Knowing that people no longer have to worry about being denied health insurance provides great satisfaction as well.
Why do you think it’s important for others to get involved?
The success of GINA is a great example of people with a common cause coming together to make change happen. It is not enough for people to sit back and think that the next guy will speak up. Each person needs to speak up for themselves and let their voice be heard. I am hopeful that enough people will speak up in support of the HD Parity Act and that too will come to fruition.