NHF Launches My Life, Our Future Genotyping Initiative

Benefits of genotyping are both individual and communal
Author: Val D. Bias

As CEO of the National Hemophilia Foundation (NHF), I can honestly say this news has been decades in the making: the launch of My Life, Our Future, a new genotyping initiative for people with hemophilia A and B. (See “Genotyping for Progress,” page 20.)

Officially announced at NHF’s 64th Annual Meeting in Orlando, Florida, in November 2012, the program gets under way this year at 10 pilot sites at various hemophilia treatment centers (HTCs) across the country. Genotyping, which is the process of determining an individual’s specific genetic mutation, is not new. It has been done for years on patients with hemophilia in the UK, Australia and Iceland. And now due to NHF’s partnership with the American Thrombosis and Hemostasis Network, the Puget Sound Blood Center and Biogen Idec Hemophilia, it will begin in the United States.

In the late 1990s, NHF’s Medical and Scientific Advisory Council passed a resolution that all people with hemophilia in the US should be genotyped. In the early 2000s, the US Congress agreed with this resolution, but did not have the money to fund the initiative. Since then, people in the bleeding disorders community have shown interest in genotyping but lacked the education to fully understand the benefits and risks, and the financial resources to follow through. Thanks to NHF and its partners in the My Life, Our Future genotyping program, patients with hemophilia A or B will be educated and offered free or low-cost genotyping at their HTC once the program expands nationwide.

The benefits of genotyping are both individual and communal. As a person with hemophilia, I practice what I preach. I have been genotyped, and the information this simple lab test provided has already benefitted my family and extended family. Also, my genotype has been stored in a de-identified, secure database that will help researchers identify genetic patterns and possibilities for future treatments, and a cure for future generations.

I foresee that genotyping will have great benefits for you and your family as well. So if the initiative has not reached your HTC yet, please be patient. Our goal is to have every patient genotyped within the next five years.

Val D. Bias is CEO of the National Hemophilia Foundation.