From Iowa to Washington D.C., advocating on behalf of those affected by Huntington disease

Monday, October 06, 2014


On July 15 and Sept. 22-23, 2014, members of the Huntington’s Disease Society of America National Youth Alliance headed to Capitol Hill to urge their members of congress to co-sponsor the Huntington’s Disease Parity Act. Joining the group was UI HDSA COE Research Coordinator Jolene Luther, who shared her HD story and successfully convinced four congressmen to co-sponsor the act.

By Christina Colletta

After losing her grandfather to Huntington disease (HD) in 2011, Jolene Luther decided she would do everything in her power to help those affected by HD. Now, the 22-year-old Belgium, Wis. native is commemorating her grandfather’s legacy while living out her mission through her career path, research contributions and, as of recently, advocacy work.

Motivated by her own journey with HD as well as the inspiring HD family members she has met along the way, Luther, who is a research assistant at the UI Huntington’s Disease Society of America (HDSA) Center of Excellence, traveled to Washington D.C. twice in three months with members of the HDSA National Youth Alliance (NYA) to advocate for the passing of H.R. 1015/S. 723, the Huntington’s Disease Parity Act.

The journey that defined her purpose

After Luther’s grandfather was diagnosed with Huntington disease, her mother and aunt decided to be tested to see if they inherited the HD gene. It came as a huge relief to learn both tested negative for HD.

Although Luther says she feels extremely lucky that her immediate family will no longer have to face HD, the people she has met through her involvement in the HD community inspire her to continue fighting.


“My family’s outcome was a very fortunate one, so I very passionately want to continue to fight back against HD for all of the inspiring people that I have met who didn't have the same luck that I had,” said Luther.

“HD is like a coin toss, and if my mom's coin toss had gone the other way, it would be me in that situation right now—with one parent suffering from HD and the prospect of having to face it myself on the horizon.”

Since Luther’s grandfather was in his 60s when he started experiencing symptoms, he qualified for Medicare. Her family’s financial situation also allowed them to care for him from their home with the assistance of a home health aide during the day.

Luther realizes most families affected by HD do not have these benefits, which she says can have a profound negative effect on the family structure.

“Often, cognitive and behavioral symptoms early on in the disease will lead families to bankruptcy, divorce, and other devastating outcomes long before they are ever qualified to receive Medicare because of disability,” said Luther.

The Social Security Administration’s outdated criteria (written nearly 30 years ago) for considering whether or not an individual with HD qualifies for Social Security Disability benefits only takes into account HD’s physical impairments, ignoring the debilitating cognitive and behavioral symptoms that can occur long before the motor symptoms.

Because of these inaccurate guidelines, individuals with HD who are not yet displaying motor symptoms are routinely denied or delayed receiving Social Security Disability benefits, and even if an individual is deemed eligible, there is a two year waiting period to receive Medicare benefits.

“These criteria need to be updated to allow affected individuals to receive care early on,” said Luther.

“This would allow their family members to better treat the disease's psychiatric and cognitive symptoms early on and also allow the family unit to remain together for longer, providing a much better quality of life for the person affected by HD.”

Taking her story to Capitol Hill


In an effort to help individuals with HD and their families achieve a better quality of life by improving access to these much-needed benefits, Luther headed to Washington D.C. with members of the HDSA NYA on July 15 to urge U.S. representatives from her home state of Wisconsin and adopted state of Iowa to co-sponsor the HD Parity Act.

If passed, the HD Parity Act would waive the two year waiting period for Medicare and require the Social Security Administration to revise its outdated guidelines for determining disability benefits to include the psychiatric, cognitive, and behavioral symptoms of HD, giving more individuals with HD access to these benefits earlier.

While on Capitol Hill, Luther met with staff members from a total of 21 Wisconsin and Iowa congressional offices, as well as meeting in person with Iowa Sen. Chuck Grassley, Wisconsin Rep. Reid Ribble and Senate Minority Leader Mitch McConnel of Kentucky.

“I went into it thinking that I should just be honest,” said Luther. “Some of the things that happened in my family after my grandpa began his journey with HD are disconcerting and difficult for me to discuss openly. But I think that it's important for me to share those aspects of my story with people so that they can see how devastating this disease is and hopefully affect change.”

And affect change she did. After her visits, Ribble, Wisconsin Rep. Jim Sensenbrenner and Iowa Rep. Bruce Braley agreed to co-sponsor the HD Parity Act. When Luther reached out to schedule a meeting with Wisconsin Rep. Ron Kind, he agreed to co-sponsor the bill right then and there.

“I used to find it easy to think that one single voice in this vast country can’t really make a difference,” said Luther. “After convincing three congressmen to co-sponsor the HD Parity Act, we are three steps closer to passing it. I really feel like it is possible to make a difference and affect change. It's a difficult and slow process, but hard work and persistence pay off.”

So, what is her advice for others looking to get involved in HD advocacy efforts?

“Don't think that things will just fall into place on their own or that your single voice won't make a difference. No one act is too small.”

If you are interested in getting involved and helping to advocate for the HD Parity Act, visit HDSA’s advocacy page.