Dear HDSA Advocates:
As you know, fighting for legislation that would protect against genetic discrimination has been the cornerstone of our advocacy efforts. With a new congress, this year is shaping up to be the most exciting year, in our fight, to date.
On the evening of January 16th, 2007 the “Genetic Information Nondiscrimination Act” (H.R. 493), also known as “GINA,” was introduced in the House with 143 cosponsors! This legislation, as it has in the past, will implement safeguards in health insurance and employment decisions for those who undergo genetic testing and help to close the gaps in privacy protections that exist under HIPAA and the ADA.
As the first of many action steps to take in the upcoming weeks, we ask that you copy the following letter of support and either E-mail or fax it back to HDSA. GINA’s original sponsors have asked for as many letters of support as possible to bring to the floor during the debate.
HDSA will be joining other members of the Coalition for Genetic Fairness in the collection and forwarding of these letters to the members of congress. This letter should be returned no later than Monday, January 22, 2007 Over the next few weeks you will also be receiving several bulletins outlining necessary action steps regarding GINA. We ask that you follow these steps and pass the alerts onto your friends, family, and colleagues. Encourage everyone in your community to become an HDSA Advocate and join the charge to pass GINA. To become an advocate please click on the following link: Become an HDSA Advocate Also, please check back to our website for additional updates on GINA. (www.hdsa.org)
Please find the attached letter and email or fax it to:
January __, 2007
Dear Representative Slaughter,
Thank you for your leadership on the Genetic Information Nondiscrimination Act (GINA).
This bill will benefit every American and directly improve the lives of those concerned with the misuse of their genetic information in health insurance and employment decisions.
As a member of The Huntington’s Disease Society of America and the Huntington’s Disease community, this legislation is of vital importance to my family and me. HD is a devastating, hereditary, degenerative brain disorder, which currently has no effective treatment or cure. If a person inherits the defective huntingtin gene they will develop Huntington’s Disease. Every child born to a person who carries the defective gene has a 50/50 chance of inheriting that gene and eventually developing HD.
The current lack of federal legal protections against the misuse of genetic information has restricted individuals’ access to health information and clinical trials. Fear of the misuse of genetic information limits access to genetic tests. Fear of discrimination also causes a large number of people to opt out of clinical trials. This lack of participation in research has a negative impact on researchers, clinicians, and industry, slowing the research and development process for targeted drugs and treatments. In order to fully promote personalized medicine and the use of genetic information in healthcare, we must pass GINA legislation.
GINA would protect HD patients from the discrimination that hinders genetic testing and would also encourage entrance into many promising studies of treatments for this devastating disease. HDSA has pledged to make this the last generation to suffer from HD. GINA would help make that a reality. Thank you once again for your foresight and bold leadership on this issue. We look forward to working with you to have the GINA legislation pass swiftly.