This is from the PKD Foundation, but the legislation would apply to everyone who has a genetic disorder.
Push Begins for Non-Discrimination Bill The push to enact Genetic Non-Discrimination legislation began Tuesday when U.S. Reps. Louise Slaughter of New York, Judy Biggert of Illinois, Anna Eshoo of California and Greg Walden of Oregon introduced legislation to prohibit the use of genetic information in employment decisions and prohibit health insurers from establishing enrollment restrictions on the basis of genetic information.
The legislation, H.R. 493, has 143 co-sponsors supporting the bill so far, including 90 Republicans and 53 Democrats. There is no word yet on a Senate bill. Passing this legislation is vitally important to the current and future health, productivity, life expectancy and peace of mind for millions of Americans who have life-threatening genetic diseases like PKD or the potential to develop such diseases. There are approximately 2,000 rare and genetic conditions affecting at least 14 million people in the United States, according to the Genetic Alliance.
The fear of genetic discrimination keeps many individuals at risk for PKD from testing for the presence of the disease, and it prevents many who know they have the disease from accessing the very treatments that could prolong their kidney function. In addition, current and future clinical trials will have problems recruiting critical volunteers because of the unwillingness to go public with their PKD status. These patients fear losing their health insurance or missing out on promotions, partnership opportunities, pay raises, increased work responsibilities and other employment enhancement options.
The PKD Foundation will be issuing an Action Alert soon to urge our members to contact their Representatives to support this bill.
http://www.pkdcure.org/site/PageServer?pagename=foundation07_discrimination
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