Editor,
This is an open letter to Congressman Rick Larsen.
As you may be aware, Huntington’s disease, or HD, is a rare, fatal, genetic neurodegenerative disease that progressively causes total physical and mental deterioration during an individual’s prime working years. Every individual with HD will ultimately lose the ability to live independently.
Today, 30,000 Americans are known to have HD, and another 200,000 are considered “at risk” of inheriting the disease from an affected parent.
You have done so much for our community, but we still need your help.
Finally, after 30 years of inaction, the Social Security Administration updated the guidelines for Huntington’s disease earlier this year.
We were hopeful that all of our work, coupled with the tremendous bipartisan support of Congress, had finally broken the bureaucratic logjam at Social Security.
We were extremely disappointed to find that Social Security made the disability listing for Huntington’s disease even worse than before. Social Security ignored decades of medical science and the experiences of HD families and determined that only those with the physical symptoms of the disease are disabled.
It is because of this lack of understanding that we need your help.
Over 30 years ago, my husband and I adopted a baby whose father and grandfather had Huntington’s Disease. We were aware that our baby son would be “at risk” for the disease, yet we felt that this child was the answer to our prayers. As it turned out, our son began to show symptoms of Juvenile Huntington’s Disease in his teens and, today, is totally unable to work or to live on his own. As 60-plus-year-old parents, we are taking care of our 30-year-old son.
Recently, I received discouraging questions, challenges and responses from Social Security, which may affect the small amount of disability income our son receives.
The small amount of disability income our son receives would not cover his care or living expenses if he doesn’t have our family to provide the growing daily physical care to meet the needs he has. It would cost the state and federal government far more money if our son was institutionalized or needed to be dependent on other programs.
I want to again extend my thanks for your enthusiastic support of the Huntington’s Disease Parity Act of 2013. This legislation brings necessary and life-changing government services to those individuals and families battling this merciless disease.
The Parity Act addresses problems with Social Security Disability Benefits and Medicare benefits, which are currently out of reach to so many families.
I am so grateful for your support of this bill, but we still need your help, now more than ever.
Please keep up the good work and know that it does not go unnoticed.
The only way that we can ensure that HD families in our community are protected is by passing the Huntington’s Disease Parity Act today. As a co-sponsor of this vital bill, we need you to weigh in with congressional leadership to get this bill passed.
We wish that we didn’t need an act of Congress to protect our families, but unfortunately we do.
I am counting on you to continue standing up for our community by doing everything in your power to pass this bill.
Cheryl L. Lawler
Oak Harbor
