To the Editor:
Nine years ago, I made my first foray into legislative advocacy because my nephew asked me to visit Olympia’s Snowe’s office and ask her to co-sponsor The Parity Act for Huntington’s Disease (HD). I knew nothing about the act but said I would learn and go. It was then that my nephew told me he had tested positive for this devastating disease and I was launched into becoming the Maine Affiliate Chair for the Huntington’s Disease Society of America. Since that first visit I have continued advocating for the Parity Act along with members of the Maine Affiliate without gaining one co-sponsor from Maine — that is, until this year.
In April, Luke Brochu, Marcia McGarry, Valerie Mekras and I (all from HD families) visited Congressman Jared Golden’s office in Bangor and met with his representative and Morgan Urquhart, who listened most respectfully and relayed our personal stories and information about Huntington’s disease and the Parity Act to Dan Jenkins, Golden’s health care staff member in D.C. Dan requested the language of the bill from me as it was to be reintroduced to the House May 15. Shortly thereafter, he contacted me to say that Congressman Golden had agreed to co-sponsor the bill. He is the first from Maine to honor our request.
If the bill finally passes, people with HD who qualify for Social Security Disability will not have to wait two years before receiving Medicare. Currently, the waiver applies only to ALS and end-stage renal disease. HD strikes in prime working years and leaves the affected person unable to work or live independently. A spouse often needs to become the full-time caregiver, leaving the family with no income or the health insurance that is needed for specialized care.
A few years ago, Sen. Collins wrote a letter to the Social Security Administration on our behalf requesting that that 30-year-old criteria to qualify for disability be updated to include the cognitive and psychiatric components of HD. That change was made. However, we still need both Sens. King and Collins to reverse their former stands on this critical bill and become co-sponsors.
The Maine Affiliate is grateful to Jared Golden for taking this big step to support families suffering from HD.