by Joe Cosentino, Corporate Outreach, NJ Chapter Board

For families affected by Huntington's Disease, this story may seem all too familiar. A patient is diagnosed with HD, denied disability benefits, and then, after reapplying and finally being approved, the patient must wait an additional two years to receive benefits. For those with early HD, this may not come as a surprise - outwardly, everything seems normal, how can one prove an inability to multi-task or the loss of memory? While this may be the process we've become used to, we will not accept it as the status quo. The fact is, during the two-year period where newly diagnosed HD patients are forced to wait for Social Security Disability Insurance (SSDI) benefits through Medicare, 1 in 25 will die, and many more will be forced to quit their jobs, or worse.

To ease the burden on HD families, the Huntington's Disease Society of America (HDSA), in conjunction with various members of congress, has advocated for the passage of the HD Parity Act. The bill would remove the mandatory two-year waiting period for HD patients to receive benefits after being approved. The act was brought before congress in 2015 and received bi-partisan support, earning co-sponsorships from more than half of the House and one-fifth of the Senate. While this was an impressive amount of support, it was not enough, and the legislation will be reintroduced to Congress next month.

Absent from the co-sponsor list were several Representatives from New Jersey, as well as Senator Cory Booker. Nancy Small, Chair of the HDSA NJ Chapter's Education and Advocacy Committee, pushed relentlessly for Senator Booker's ear on the issue and managed to secure a meeting with his healthcare team. On March 31, 2017, a team of volunteers from New Jersey met with Hanna Mori, Deputy State Director, and Bianca Madzarova, Projects Specialist, to share our stories and why we need Senator Booker's sponsorship of the HD Parity Act.

The volunteers included individuals living with HD, caretakers, spouses, and family members who have lost too many to the disease. We shared stories of lives taken too soon, life savings lost, and the uncertainty of one day being diagnosed as gene positive. Each individual exuded emotion, and tied their situation back to why the two-year waiting period is unacceptable. By the end of our meeting, we had the hearts of Hanna and Bianca, and felt that we made real progress towards getting Senator Booker's sponsorship. The last question that Hanna asked during the meeting was, "What is the purpose of this two-year waiting period?" To this, our group had no answer.

Apparently, a two-year waiting period is not uncommon for receiving a variety of disability benefits and is mandated as a cost-reduction measure. That said, exceptions have been granted for both Amyothropic Lateral Sclerosis (ALS) and End-Stage Renal Disease, as a result of similar advocacy efforts. In addition, the HD Parity Act has already received a provisional cost estimate from the Congressional Budget Office, and the projection, $150 million over the next decade, is small by the standards of a typical congressional bill. HDSA was not surprised to see this cost estimate come in so low, as studies have shown that providing health insurance to individuals during the waiting period should reduce Medicare spending on these individuals over the long-term.

HDSA NJ Community, we need your help! Call the offices of your Senators and Representatives and ask for their support! In 2015, sponsors included Senator Bob Menendez, and Representatives Bill Pascrell Jr., Leonard Lance, Rodney Frelinghuysen, Donald Payne Jr., Albio Sires, Christopher Smith, Frank LoBiondo, Scott Garrett, and Frank Pallone Jr.  Absent from this list are US Senator Cory Booker, and Representatives Donald Norcross, Tom McArthur, Josh Gottheimer, and Bonnie Watson Coleman.