Failure of Principles?

Oldham at AIDSWatch

On Sunday the board of the National Association of People with AIDS (NAPWA) met to discuss how to move members of the pharmaceutical and AIDS industry off of the NAPWA board of trustees and make the board entirely run by people living with HIV/AIDS. But no changes were made to board policy, and many -- notably, two high-profile veterans of AIDS activism -- remained deeply concerned about NAPWA's ability to change the way it does business and effectively represent people living with HIV/AIDS.

The launch of the Denver Principles Project this year was supposed to represent a new beginning for NAPWA, which is hurting for both membership and political direction. When Housing Works President and CEO Charles King endorsed the Denver Principles Project last month, he said that NAPWA Executive Director Frank Oldham and Board Chair David Munar assured him that they would work to push back pharmaceutical and corporate industry influence on the board. They wrote in a letter, "We also believe that NAPWA would benefit from establishing an industry advisory council, one that prohibits industry representatives from serving in a legal or fiduciary role as a member of NAPWA's board of trustees. We expect NAPWA's board will agree to amend our by-laws accordingly."

According to those who attended Sunday's board meeting, however, the issue of pharmaceutical and corporate influence was discussed, but no action was taken. "Board members are reluctant to focus on member-driven priorities and pull back from grant-driven priorities," said board member Larry Bryant, who is also director of national organizing at Housing Works.

Oldham told the Update that he doesn't see NAPWA making significant changes. He said that NAPWA will make more financial contributions to ensure that more low-income PWAs sit on the board and that NAPWA will continue to ensure that a majority of its board members are people living with HIV. But he also said that NAPWA needed the support of a broad coalition to be effective.

"We need the private sector, the government sector and the community to work together," Oldham said.

King disagreed, saying that there are other organizations that already play that role. "Ostensibly the National Association of People With AIDS is about people with AIDS, and _not _the government or the private sector," King said. "What I'm most disappointed about is that the Denver Principles Project is an opportunity for NAPWA to maintain relevance for PWAs and NAPWA is frittering that opportunity away."

Sean Strub, founder and former publisher of POZ Magazine, which partnered with NAPWA to launch the Denver Principles Project, agreed with King that NAPWA needs to change the way it does business. Strub said that because many organizations, and NAPWA in particular, rely almost entirely on pharmaceutical money and government grants, they are unwilling to challenge the status quo. "For years NAPWA's business model has been fairly flawed," he said.

Time to Grow?

The Denver Principles Project has shown some promise, adding 700 members, 300 paid. Before the project started, NAPWA had less than 500 paying members, although a database of 20,000 people. Its goal is to have 100,000 new members. The project is based on the original Denver Principles, which was written in 1983 by PWAs and stated rights and responsibilities for people to be in control of their own health care and lives.

Oldham said the Project needs time to be successful. "Even the most noble efforts to revitalize the AIDS Community like the Campaign to End AIDS , and the NAPWA/POZ Denver Principles Project take much more time and effort to attract thousands and thousands of supporters. It's really about long-term dedication and commitment. Trying to accomplish these goals in only two or three months, or even one year is just unrealistic."

Strub is behind the project. He hopes it will energize PWAs around issues critical to ending AIDS. "In Washington, there's a lot of different groups that claim to represent people with AIDS, but there's not cohesive leadership. A lot of it has to do with the institutionalization of AIDS. Employees have to be paid, institutions need to be fed. And on some people's part there's a sense of complacency," Strub said.

King sounds less optimistic about the future. "When I endorsed the Denver Principles, I was assured that NAPWA's governance and empowerment and PWA members, beginning with this week's board meeting," he said. "Clearly they haven't taken any steps. This leads me to question how serious the NAPWA board is about revitalizing the Denver Principles and improving the lives of PWAs."