Due to clutch (auto) problems I was unable to participate in the HDSA Advocate conference call on GINA, but I did get the information packet and since Erin has asked that this information be shared with the community I thought I'd take the liberty here to share with my cybercommunity.
So what ARE HDSA's legislative priorities? I think I'm at liberty to present them. I suppose the HDSA lawyers will contact me if that's not the case.
Genetic Privacy and Non-Discrimination: HDSA supports federal and state legislation prohibiting the disclosure of genetic information to employers, insurers and other institutions without the permission of the individual. Also, HDSA supports federal and state legislation that prohibits employer discrimination based on the outcome of a genetic test or a family history of genetic disorder. Current federal law (HIPAA and
NIH Reauthorization: HDSA supports increased funding for NINDS (National Institute of Neurological Disorders and Stroke) and other institutes at the NIH that deal with Huntington’s Disease (HD) and other related brain disorders. This funding will insure continued money for research. HDSA opposes any measure that would abolish or consolidate any of the independent institutes within the NIH.
Medicare Part D/Government pharmaceutical price negotiation: HDSA is not opposed to the government acting as party in negotiations with pharmaceutical companies on the behalf of Medicare recipients. However, HDSA does oppose the “Medicare Enhancements for Needed Drugs Act of 2007.” This was introduced on
Stem Cell Research: HDSA supports the use of stem cell technology, in finding a cure for Huntington’s Disease, consistent with the recommended guidelines of the National Institutes of Health and as permitted by law. Stem cell research may eventually play a role in the treatment of Huntington’s Disease. HDSA supports the Stem Cell Research Enhancement Act, which would increase the number of stem cell lines available for use in federally funded research, and would follow the guidelines set forth by the NIH.