Huntington’s Disease Action Alert

The Huntington’s Disease Society of America is asking advocates to contact their Members of Congress to expedite Social Security Disability Insurance for patients upon diagnosis.

Huntington’s Disease 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.

People with HD applying for Social Security Disability Insurance (SSDI) are routinely denied or experience long delays due to the Social Security Administration’s (SSAs) use of outdated, medically inaccurate guidelines. The guidelines were written nearly 30 years ago and only take into account HD’s physical impairments.  We now know that the debilitating cognitive and behavioral effects of HD occur at least a decade before the visible, physical effects, often leading to loss of employment and employer provided benefits. As a result, the outdated guidelines cause individuals with HD to experience long delays and multiple denials of critical SSD benefits.

Please see the following action alert from the Huntington’s Disease Society of America. The link will take you to a form that will send your member of congress a email about the issue:

Click here to download the Huntington’s Disease legislation Fact Sheet.