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RE: Open Access Publication of Scientific Research -- FY 2005 Appropriations

August 6, 2004

425 Market Street, 32nd Floor
San Francisco, CA 94105

Honorable Ralph Regula, Chairman
Honorable David R. Obey, Ranking Minority Member
U.S. House of Representatives, Appropriations Committee
Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
Room 2358 Rayburn House Office Building
Washington, DC 20515-6024

Honorable Arlen Specter, Chairman
Honorable Tom Harkin, Ranking Minority Member
U.S. Senate Appropriations Committee
Subcommittee on Labor, Health and Human Services, Education
United States Senate
Washington, D.C. 20510

Elias A. Zerhouni, M.D.
Direction, National Institutes of Health (NIH)
9000 Rockville Pike
Building 1
1 Center Drive
Bethesday, Maryland 20892

RE: Open Access Publication of Scientific Research -- FY 2005 Appropriations

Dear Representatives Regula and Obey, Senators Specter and Harkin and Dr. Zerhouni:

Our organizations are volunteer and nonprofit HIV/AIDS treatment, vaccine, and prevention advocacy groups with a long history of community participation in all aspects of government and privately sponsored research to fight the AIDS pandemic.  In that capacity, we support at July 16, 2004 House Appropriations Committee recommendation that NIH develop a policy requiring a complete electronic text of any manuscript reporting work funded by NIH grants or contracts be supplied to the National Library of Medicine's PubMed Central.  (The specifics of that policy have yet to be announced or commented on publicly.)  Furthermore, we support greater efforts to increase open access to medical research/scientific publications, especially for those studies or reviews funded by taxpayer dollars.  We understand the House Committee calls on NIH to report by December 1, 2004 on how it intends to implement a policy.

Community advocates are frequently appointed to Food and Drug Administration (FDA), NIH and investigator science boards pursuant to Federal Advisory Committee Act procedures or to other official advisory bodies requiring advocates and their constituents to keep abreast of and speak knowledgeably on latest scientifc developments.  Community representatives are also included on the Institutional Review Boards (IRBs) federal regulations establish to oversee the ethics of clinical trials.  Your committees and the federal grant agencies require and solicit broad input based on sound science to decide numerous policy, research and funding choices.  The patient and at risk public community on whose behalf the published research is performed -- including the human subjects recruited by scientists to take part in clinical trials -- are, therefore, those with the greatest need to know first hand, promptly, what those studies say.  That knowledge helps the public argue credibly on vital health research issues and fulfill civic responsibility.  Without such access to knowledge, the value of public comment would be diminished.  

The Internet permits access to billions of pages of information.  But most interested taxpayers do not have effective access to significant reports on biomedical research conducted with U.S. Government funds.  Although the public paid for this research, informative, peer reviewed reports on the results are generall y available only through costly journal subscriptions averaging thousands of dollars annually or via per-article purchases that can run $30 or more each.  A single health issue may involve citation to dozens of related individual articles.  The public is at a double disadvantage because academic or published researchers themselves may not always absorb the costs of subscriptions and may on occasion pass on related overhead again to taxpayers through their grant conditions.  That is inequitable and creates economic dysfunction.

Our organizations support proposals that would require the results of research funded in whole or in part by the NIH be made available online expeditiously and at no extra charge to the public.  We also endorse principles of open access as articulated by the Wellcome Trust (http://www.wellcome.ac.uk/en/1/awtvispolpub.html) and the Organisation for Economic Cooperation and Development (http://oecd.org/document/15/0,2340,en_2649_34487_25998799_1_1_1_1,00.html).  Many experiences and models show that open access publication, and increasingly common approach with wide support, is economically and professionally viable.  Open access is consistent with cornerstone principles of beneficence and respect for persons when conducting research on human subjects and will contribute to the wilingness of individuals to participate in subsequent research because they have full, shared, knowledge of results.

This consumer-centered measure is a long over-due means to enhance public health education, speed the translation of scientific advances into quality, affordable health care, and empower patients in their health care decisions.

Reportedly, NIH has already conducted several meetings on this issue with representatives of publishers and researchers but without significant invitation to or inclusion of patient advocates or public interest groups. (http://www.biomedcentral.com/news/20040729/04).  We also request NIH include community and human subject research representatives in any further discussion to implement open access policy.

Please call either Mitchell Warren at 212-367-1084 (email: Mitchell@avac.org) or Robert Reinhard at 415-268-7469 (email: rreinhar@mofo.com) or by return address) if you have any further questions about this letter.  We appreciate your consideration.

Mitchell Warren                                                 Robert Reinhard
Executive Director, AVAC                                Board Member, AVAC

On behalf of the following signing organizations:

AIDS Vaccine Advocacy Coalition (http://www.avac.org/)
AIDS Action Baltimore (http://members.aol.com/baltoaids/index.htm)
Treatment Action Group (http://www.aidsinfonyc.org/tag/%20and%20http://www.aidsinfonyc.org/tag/about.html)
Elizabeth Glaser Pediatric AIDS Foundation (http://www.pedaids.org/)
San Francisco AIDS Foundation (http://www.sfaf.org/)
Alliance for Microbicide Development (http://www.microbicide.org/)
Protocol Working Group Community Advisory Board within the HIV Vaccine Trials Network

CC:  John Burklow, NIH
Lana Skirboll, NIH
Kevin S. Johnson, U.S. House Appropriations Committee
Richard Klein, FDA

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