One of the best ways an advocate can help in the fight against HD is by raising awareness among members of Congress. Informing our elected representatives about HD and urging them to take an interest in the issue can lead to their support of legislation favorable to our cause. This type of advocacy may be done in writing by addressing a letter to our representatives in both House and Senate or in person by arranging a visit to the Congressman's office, either in Washington, D. C. or in one of their district offices.
When writing to your elected officials, you can help support the following:
- The "Genetic Information Non-Discrimination Act of 2003" was passed by the Senate, but is currently stalled in the House of Representatives. This bill is designed to protect individuals from discrimination in health insurance and employment on the basis of genetic information.
- The "Ending the Medicare Disability Waiting Period Act of 2004" seeks to phase out the 24-month waiting period for individuals who receive Social Security Disability (SSDI) benefits to qualify for Medicare coverage. It was recently referred to the Committee on Finance.
- Increased funding to the National Institutes of Health (NIH) and more specifically to the National Institute of Neurological Disorders and Stroke (NINDS).
If you would like to encourage Congress to pass these bills and to increase funding for HD research, please follow the instructions below.
For updates and alerts concerning legislation that may affect HD patients and families, please check our What's New and visit the HDSA website.
If you would like to receive advocacy information via email and/or regular mail, please contact Advocacy and Family Services Coordinator Annie Sukhnandan at sukhnandan@hdsa.org .
Thank you for your support!
