Wendy's Letter

Because of its impact on cognitive behavior, people with HD gradually lose their ability to work. As a result, many people with HD rely on social Security income. The Social Security system has not revised its criteria for the medical evaluation of people with Neurological disabilities since 1985. The current criteria are not appropriate and do not adequately measure the types of disability caused by HD. Even if someone is approved for SSDI income, there is a 24-month waiting period for Medicare eligibility. Many people are left without adequate medical treatment in this gap while waiting for Medicare benefits.

Many are working to change this. A bill was introduced to the House of Representatives in 2009 called HR 678, the Huntington's Disease Parity Act. If passed, this bill would require Social Security to change the medical criteria for evaluating disability caused by HD, as well as eliminate the 24 month waiting period for Medicare eligibility. The bill has been referred to the House Committee of Ways and Means.

To get more information about HR 678 and to express your support for it, click here.

W endy Klish, a member of the Triangle Support Group, wrote her congressman, David Price, to express her support for HR 678. Below is his answer to her which reveals a deep understanding of the issues at hand.