ORLANDO, Fla., Nov. 8, 2012 /PRNewswire/ -- A coalition of leaders in hemophilia advocacy and treatment today announced a nationwide program that will offer free genetic testing to people with hemophilia and their families. The partnership will be officially unveiled this evening at the 64 th National Hemophilia Foundation (NHF) Annual Meeting in Orlando, Florida.
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The initiative, called My Life, Our Future: Genotyping for Progress in Hemophilia, is a partnership of the NHF, the American Thrombosis and Hemostasis Network (ATHN), Puget Sound Blood Center (PSBC), and Biogen Idec (NASDAQ: BIIB). It is designed to help uncover genetic information that can be used by physicians to individualize the care of people with hemophilia, as well as generate data that may lead to new scientific discoveries.
Genetic testing, or genotyping, is used to identify the genetic mutation that causes hemophilia, a rare inherited disorder that impairs blood clotting. Research has shown that certain mutations are associated with an increased risk for severe bleeding and inhibitors, a major complication that involves an immune response to treatment. Healthcare providers can tailor treatment to the individual needs of patients when these risks are understood. In addition, women in a patient's family are often tested to determine if they carry the gene for hemophilia, and genetic counseling can inform family planning and pregnancy care."This partnership is about helping people affected by hemophilia gain a better understanding of their genetic make-up and working with healthcare providers to use that information to provide more individualized care tailored to the needs of families," said Val Bias, Chief Executive Officer of NHF. Program Will Address Barriers to Genotyping Despite the potential benefits, only about 20 percent of people with hemophilia in the U.S. have been genotyped, according to a survey of healthcare providers conducted by ATHN. In addition, the U.S. lags behind other developed countries such as Australia and the U.K., which offer genotyping to people with hemophilia as a matter of standard care. In a recent NHF survey of the hemophilia community, cost and insurance coverage restrictions were cited as primary barriers to genetic testing by people who did not know their genotype. Overall, more than 75 percent of survey respondents expressed a strong interest in receiving free or very low cost genotyping through this new initiative.