AIDS Treatment Activists Form New Coalition

Twenty-one U.S. AIDS treatment activists met for three days in August and began to outline a new coalition to improve AIDS research, treatment access, and empowerment of new activists in communities most affected by the epidemic. The August 17-19 meeting, hosted by The Center for AIDS: Hope and Remembrance Project in Houston, Texas, resulted from earlier community meetings held at the annual Retroviruses conference in 2000 and 2001.

The new organization, tentatively named AIDS Treatment Activist Coalition, will address several concerns:

• There is no national organization or meeting of AIDS treatment activists to discuss and develop overall strategy. (NATAF, the North American AIDS Treatment Action Forum, serves another purpose, educating new activists and advocates.)

• Each year there are at least a dozen pharmaceutical company meetings with AIDS treatment activists. These meetings are called by different companies, each of which sets the agenda and decides who will be invited to represent patients and the public. U.S. activists want to move toward the European system of ongoing, structured meetings with the companies, where the community selects its own representatives and invites the company whose products will be discussed, instead of letting industry determine who will represent the community at major company/community meetings. ATAC also hopes to improve communication about the discussions that take place at these meetings, so that activists who do not attend can be informed.
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• Treatment activists must be more representative of the demographics of the epidemic (including more people of color, women, and young people). The new organization will emphasize mentoring, educating, and empowering new activists -- and may require members to recruit others from underrepresented groups.

• Today a small number of highly experienced activists are overcommitted. We need to help provide more opportunities for treatment education, and otherwise make it feasible for more people to become treatment activists.

ATAC will focus on biomedical research, including diagnostics, vaccines and microbicides as well as drugs, and will include AIDS-related illnesses such as hepatitis C and tuberculosis, as well as HIV infection and its complications.

Membership policies, bylaws, and other specifics are still being determined. For example, it is likely that membership will be open to all persons with HIV and their advocates, with members joining as individuals (not as representatives of organizations) and paying nominal dues; but there might or might not also be a separate category of organizational member for nonprofit organizations. The organizers are seeking input from the public and can be reached through the email addresses below.

Standing committees so far are Bylaws; Communication; Fundraising; Membership; Mentoring; and Research, Development, and Access.

For More Information; Contacting ATAC

ATAC has started a Web site at http://www.atac-usa.org; you can also send email to info@atac-usa.org.

ATAC has a temporary steering committee, and you can also contact the members individually:

Parrish Crosby Parrishfc@yahoo.com

Yvette Delph YvetteDelph@aol.com

Larry Diaz sadatatx@hotmail.com

Mike Donnelly MrDonnelly@aol.com

Gregg Gonsalves greggg@gmhc.org

Michael Marco Mikemarco@aol.com

Bob Munk bobmunk@ix.netcom.com

Claire Rappoport clairer@itsa.ucsf.edu

Notes

1. This writer participated in the organizing meeting in Houston, and drafted the statement above with the assistance and approval of the group.

2. We are especially impressed that this coalition has started useful work immediately, within a week of its organizing meeting; see http://www.atac-usa.org.

ISSN # 1052-4207

Copyright 2001 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.

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