Free Genetic Testing Initiative to be Available Nationally at Hemophilia Treatment Centers

  Free Genetic Testing Initiative to be Available Nationally at Hemophilia
  Treatment Centers

          – My Life, Our Future pilot phase successfully completed –

 – Initiative aims to offer genotyping to all people affected by the disorder
                            in the United States –

  – May help improve treatment and care today, and advance future hemophilia
                                  research –

Business Wire

ANAHEIM, Calif. -- October 2, 2013

Today, a coalition of leaders in hemophilia advocacy and treatment announced
the national rollout of My Life, Our Future: Genotyping for Progress in
Hemophilia, which offers genetic testing, or genotyping, to people with
hemophilia, a rare genetic disorder that impairs the ability of the blood to
clot properly. Following the successful completion of an eleven site pilot
program, hemophilia treatment centers (HTCs) across the U.S., where the
majority of people with hemophilia receive care, can now participate in the
program and offer genotyping to the patients they serve.

My Life, Our Future is a partnership of the National Hemophilia Foundation
(NHF), the American Thrombosis and Hemostasis Network (ATHN), Puget Sound
Blood Center (PSBC), and Biogen Idec (NASDAQ: BIIB). Through genotyping, it is
possible to identify the specific DNA mutation(s), or change(s), responsible
for a person’s hemophilia and provide potentially useful information about
his/her bleeding severity or risk for inhibitors, a major complication of
hemophilia that involves an immune response to treatment. Through My Life, Our
Future, participants can also contribute their data and samples to a secure
central research repository, which can serve as a roadmap to greater
scientific understanding of the disorder.

“My Life, Our Future is a potential opportunity to shape the future of
hemophilia treatment and care,” said Val Bias, chief executive officer, NHF.
“I urge all people with hemophilia to participate; by enrolling at a
participating HTC, they have a chance to learn more about their disorder today
while furthering scientific advances tomorrow.”

Barbara Konkle, M.D., director of clinical and translational research, PSBC,
emphasized the value of genotyping the entire hemophilia community and
creating a robust data repository for future research. “By examining a large
amount of genetic material rather than individual samples, we may be able to
answer important questions such as why some patients bleed more than others or
experience greater joint damage. Armed with this information, physicians may
be able to better care for their patients and scientists may be able to
develop more targeted treatments.”

My Life, Our Future was initially rolled out to eleven HTCs as part of a pilot
program. Since the initiation of that pilot, 275 people with hemophilia
enrolled in My Life, Our Future, with the majority opting to contribute to the
research repository. Diane Aschman, MS, president and chief executive officer
of ATHN, is hopeful that HTCs across the country will participate and provide
this valuable service to patients who would not otherwise have access to

My Life, Our Future is the first program to make a free genotyping test widely
available to people in the U.S. with hemophilia A and B. In contrast to many
developed countries where genotyping is considered standard of care, only
about 20 percent of people with hemophilia in the U.S. have been genotyped,
largely due to cost and insurance coverage barriers.

“My Life, Our Future enables us to offer something valuable to our patients,”
said Lisa Baker, hemophilia nurse, Hemophilia Treatment Center of Central
Pennsylvania at Penn State Milton S. Hershey Medical Center, a HTC
participating in the program. “We have long known the benefits of genotyping
but many of our patients couldn’t participate due to cost or insurance

“As part of Biogen Idec’s enduring commitment to help address unmet needs in
the hemophilia community, we are honored to be a founding partner of this
long-sought and important initiative,” said Glenn Pierce, M.D., Ph.D., senior
vice president of Global Medical Affairs and chief medical officer of Biogen
Idec’s hemophilia therapeutic area, which is providing scientific
collaboration and financial support for the program. The company will not have
special access to the data or samples generated by the initiative.

About My Life, Our Future: Genotyping for Progress in Hemophilia

My Life, Our Future is a partnership of the National Hemophilia Foundation
(NHF), the American Thrombosis and Hemostasis Network (ATHN), Puget Sound
Blood Center (PSBC), and Biogen Idec Hemophilia. The program offers a free
genotyping test to people in the U.S. with hemophilia A and B. Over time, the
program will be expanded to include potential carriers in their families. For
more information and a list of participating hemophilia treatment centers as
they become available, visit

About The National Hemophilia Foundation (NHF)

The National Hemophilia Foundation (NHF) is dedicated to finding better
treatments and cures for inheritable bleeding disorders and to preventing the
complications of these disorders through education, advocacy and research.
Established in 1948, NHF is based in New York City with 51 chapters throughout
the United States. NHF’s programs, initiatives and events are made possible
through the generosity of individuals, corporations and foundations as well as
through a cooperative agreement with the Centers for Disease Control and
Prevention (CDC). For more information, visit NHF online at

About The American Thrombosis and Hemostasis Network (ATHN)

The American Thrombosis and Hemostasis Network (ATHN) is a non-profit
organization committed to advancing and improving care for individuals
affected by bleeding and thrombotic disorders. ATHN’s mission is to provide
stewardship of a secure national database, adherent to all privacy guidelines,
which will be used to support clinical outcomes analysis, research, advocacy
and public health reporting in the hemostasis and thrombosis community. ATHN
represents over 130 Hemophilia Treatment Centers. More information is
available at

About The Puget Sound Blood Center (PSBC)

Puget Sound Blood Center is an independent, community-based nonprofit
organization with a tradition blending volunteerism, medical science and
research to advance transfusion medicine and improve patient care. A
recognized leader in transfusion medicine, the Blood Center serves patients in
more than 70 hospitals and clinics in 14 Western Washington counties. Patients
with leukemia, cancer, hemophilia, thrombosis, sickle cell disease and
traumatic injuries depend on Blood Center research. PSBC has a state-of-the
art laboratory with world-class expertise in hemophilia mutation analysis.
More information is available at

About Biogen Idec

Through cutting-edge science and medicine, Biogen Idec discovers, develops and
delivers to patients worldwide innovative therapies for the treatment of
neurodegenerative diseases, Hemophilia and autoimmune disorders. Founded in
1978, Biogen Idec is the world's oldest independent biotechnology company, and
patients worldwide benefit from its leading multiple sclerosis therapies. For
more information, please visit or

Photos/Multimedia Gallery Available:



Kathleen Van Gorden, +1-401-480-1840
Keith Hudson, +1-917-992-4403
Karen Kirby, +1-206-292-4670
Biogen Idec
Andrew Law, +1-781-464-2139
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