[no subject]

["John D'Ignazio" <john@arl.org>]

For Immediate Release
July 21, 2004

Genetic Alliance Backs Open Access to NIH-Funded Medical Research

Disease and Patient Advocates Must be the Bridge to New Knowledge

Washington, D.C. (July 21, 2004) 
The Genetic Alliance, a coalition of 600 member organizations that
advocate for patient families across America, have urged Congress to
support a National Institutes of Health (NIH) policy requiring that
biomedical research funded through NIH grants or contacts be available at
no extra cost to the public.

Sharon Terry, President and CEO of the Genetic Alliance, noted, "This
consumer-centered measure is a long-overdue means by which to enhance
public health education, speed the translation of genetic advances into
quality, affordable health care, and inform and empower patients in their
health care decisions."

In the text of her letter to Representative Ralph Regula (R-OH), Chairman
of the Labor, Health and Human Services, Education and Related Agencies
Appropriations Subcommittee, Terry also argued: "Today, the Internet
brings access to billions of pages of information -- yet most American
taxpayers do not have access to the reports on biomedical research
conducted with U.S. Government funds."

"It is sometimes suggested that this information is not available to the
'homemaker in Nebraska' because she is ill equipped to deal with this
information. We know, from our 600 members, disease-specific advocacy
organizations, that the homemaker has many resources to help her use that
information -- this access is critical for the thousands of rare diseases
-- clinicians are unable to keep up with information on 6000 rare
diseases, and patients must be the bridge to new knowledge."

Terry's letter [copy available at
http://www.geneticalliance.org/openaccess.asp] supports a provision
developed by Regula's subcommittee and approved by the House
Appropriations Committee to remove barriers to open access by requiring
the results of researched funded by the National Institutes of Health
(NIH) be made available online, upon or shortly following publication, for
no extra charge to the American people.

The Genetic Alliance is a nonprofit international coalition comprised of
millions of individuals with genetic conditions and more than 600
advocacy, research and health care organizations that represent their
interests. The Genetic Alliance promotes healthy lives by working to speed
the translation of genetic advances into quality and affordable health
care, public awareness and consumer-centered public policies.  More
information on the alliance may be found at www.geneticalliance.org.

Contacts:

Sharon F. Terry
sterry@geneticalliance.org

Susan Ghabarpour, MA
Director of Outreach
sghanbar@geneticalliance.org
Phone: (202) 966-5557