At Housing Works, we have always believed that the movement to end the AIDS pandemic should be led by people living with HIV. That notion is true to our roots: Housing Works was born out of the New York AIDS Coalition to Unleash Power (ACT UP). ACT UP’s “nothing left to lose” militancy changed the course of the AIDS epidemic and had a positive impact on health care and drug development in ways that have benefited everyone, not just people living with HIV and AIDS.

But an AIDS movement led by people living with the virus did not start with ACT UP. In 1983, three years before ACT UP formed, a small group of people living with AIDS came together at an LGBT health conference in Denver to draft a manifesto. The manifesto demanded that people living with AIDS play a central role in determining their own fate and the right to live whatever remained of their lives with dignity.

The manifesto became known as “The Denver Principles” and is the Magna Carta of AIDS activism. The steps taken following that gathering led to the founding of the National Association of People with AIDS (NAPWA), our first unified national voice.

Sadly, NAPWA never received the full support of the community. Today, its dues-paying membership is almost nonexistent. In fact, NAPWA would not survive today if it were not for government contracts and grants from pharmaceutical companies that make it virtually impossible for NAPWA to serve as an independent voice on behalf of those of us who are living with the virus.

Notwithstanding the progress we have seen over the last two decades, we need a strong, membership-driven voice on behalf of people living with AIDS and HIV. For this reason, Housing Works is endorsing the NAPWA’s new membership initiative, The Denver Principles Project. This exciting effort has the potential to engage people living with HIV and AIDS and restore financial independence to an organization that could speak for the groups that are most infected and affected by the virus. The Denver Principles Project is intended to return NAPWA to its roots by actively diversifying its membership.

That means recruiting people living with HIV/AIDS (PLWHAs) who are poor, from rural areas, immigrants, young people and those who are uninvolved with AIDS advocacy. An expanded membership—NAPWA hopes to recruit 100,000 members the first year—will lessen the need for funding from government and the pharmaceutical industry, both of which compromise its independence and credibility. But possibility does not necessarily equal reality, particularly when it comes to money. And it’s not just a question of money. It is also about control. If NAPWA is to be truly independent, people living with the virus should control the governance of the organization.

To that end, I have recommended to Frank Oldham, NAPWA’s executive director, and the NAPWA Board that they create a series of benchmarks to ensure financial independence and restore leadership of the organization to people with HIV and AIDS as The Denver Principles Project unfolds. Those benchmarks include:

1) NAPWA should immediately ask members of the board whose jobs involve for-profit activities that benefit from the epidemic to resign from the board.

2) When it reaches a realistic and sustainable membership and revenue benchmark, NAPWA should move to terminate relationships with funding entities that compromise its voice on behalf of people with HIV and AIDS, including pharmaceutical grants and government contracts.

3) When it reaches a realistic and sustainable membership and revenue benchmark, NAPWA should implement a minimum number of seats—perhaps one third—that are filled through election of PLWHAs by the members and dedicate resources to ensure the participation of unaligned low-income PLWHAs.

4) NAPWA should commit to utilizing a percentage of its membership resources to cultivate and engage its membership in the development of NAPWA’s agenda, program and policies and in direct grassroots consumer advocacy.

5) NAPWA should commit to the principle that the number of people working for AIDS service organizations and other nonprofits in AIDS be limited to a percentage that is a significant minority of the board, perhaps no more than one third. I appreciate that there are many well-intentioned people, much like myself, who are HIV-positive and fill leadership roles in AIDS service organizations. We have valuable expertise and should be utilized. But most of us also sit at other tables where our interests are actually more aligned with various sectors of the AIDS community rather than explicitly with PLWHAs. At times, those interests are one and the same, but that is not always the case. Making those voices a minority would truly empower the grassroots.

6) NAPWA should eagerly seek alliances that strengthen the movement or lead to more efficient use of resources and build its grassroots base, but NAPWA must foreswear any alliance that would compromise its role as the singular national voice for people who are living with the virus.

I have had discussions with both Frank Oldham and NAPWA board chair David Munar about these issues. They have assured me that the board is seriously considering at least some of these proposals and that we will see the results of those efforts in the next few months. I appreciated their feedback and have high hopes for a reinvigoration of NAPWA. The progress we have made in fighting the pandemic was not made by sitting back and remaining passive.

Housing Works urges every single person in the United States who is living with AIDS or HIV to join NAPWA today. If you can pay the dues, pay them. If you can’t, sign up anyway. But don’t just sign up. Once you have become a member, act like you own the organization. Speak up, act up, organize and agitate. Demand that your organization, the National Association of People with AIDS, live up to its charter and be the organization it was always intended to be.