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The National Association of People with AIDS (NAPWA) – the largest, oldest, and most trusted voice for the 1.2 million People Living with HIV/AIDS (PLWHA) in the U.S. – has ceased operations and has filed a petition in United States Bankruptcy Court to discharge its debts in bankruptcy and liquidate.
NAPWA was founded in 1983 to implement the Denver Principles, in which those living with the still-new disease syndrome claimed the right to be called 'People with AIDS,' not 'AIDS victims,' and to be at the table to speak for themselves when medical and policy decisions were being made. Thirty years later, that is recognized as best practice in medical and policy settings and will continue to be for as long as HIV is still with us.
NAPWA pioneered wonderful programs for people living with HIV and AIDS, and it has faith that such programs will be continued by other AIDS service and community-based organizations. Those programs included AIDSWatch, the annual event in which hundreds of PLWHA from across the country come to Washington, D.C., to meet HIV policy experts, learn how latest science and policy developments connect with their lives on the ground, and go to Capitol Hill to tell their elected representatives what they need and why it is fiscally more responsible to serve than not to serve them. AIDS Watch will continue under the leadership of our colleagues at the Treatment Access Expansion Project (TAEP) and AIDS United as they continue to recognize the critical importance for ongoing positive leadership.
The annual Staying Alive conference, recently rebranded the National Healthy Living Summit, was also founded by NAPWA for so many of those who now live for years and decades with undetectable viral load and good health. The conferences met participants where they were, with skills-building institutes for HIV-positive women, young people, and African American men. This work will also continue in other hands.
In 1998 NAPWA founded National HIV Testing Day (NHTD), the country's first national HIV awareness day, and supported The Mayors Campaign Against HIV to extend its reach. Thirteen years later, NAPWA recognized that many ethnic and other special groups had followed suit by founding their own awareness days, but there was still no day for men who have sex with men − America's only major HIV population in which the number of new infections is still rising − so it responded by founding National Gay Men's HIV/AIDS Awareness Day (NGMHAAD). NHTD and NGMHAAD will flourish.
Through a cooperative agreement from the Centers for Disease Control and Prevention (CDC), NAPWA founded SABER, an HIV advocacy and network building program for Hispanics and Latinos − one of America's fastest growing populations, one of its most medically under-served, and, in immigration-hostile states, one of its most excluded. With the support of the Washington, D.C. EMA Ryan White Planning Council, it created the Bayard Rustin Project, an HIV-positive peer-led outreach program for African American MSM in the heart of Washington, D.C., one of America's highest HIV-incidence urban centers. Also with the support of the EMA, NAPWA pioneered best practices in medical and support system navigation and practical interventions to help those not in care find care and sustain themselves in care. This initiative, too, first as the Consumer Advocacy Project and later as HealthConnect, was led and staffed by PLWHA drawn from the communities they served. These service models helped PLWHA in special populations take charge of meeting their own needs, and we are grateful that others will continue their work.
Today, with appropriate ongoing access to care and treatment, our communities have arrived in a new era of the domestic epidemic where HIV/AIDS is a manageable long-term chronic disease– for most, not all. It’s a pivotal moment in the epidemic where science underscores our ability to end the HIV epidemic, yet moving forward there is still much work to be done. People living with HIV still need a place at the policy table. Our communities need continued education. Americans living with the virus still need help finding information and navigating services. The spirit of NAPWA will live on in the lives of many to make those things happen.
NAPWA is grateful for the collaboration of other HIV advocacy organizations with national reach to maintain a consistent and constructive policy voice on Capitol Hill. Stigma, legal discrimination, poverty, and unequal access to health care remain not just health issues, but are issues of social justice and our equal rights as humans. NAPWA takes tremendous pride in having served the 1.2 million Americans living with HIV today over the last three decades.
Leaving the stage is bittersweet: bitter, because NAPWA so wanted to be here to see the end of the HIV epidemic; but sweet, because the end of HIV and AIDS is coming. With wider testing and treatment, the HIV epidemic could end today − but there are social and political barriers to getting the job done. In not too many years, there will be a cure and a vaccine, and it will be possible to campaign for the world-wide eradication of HIV.
When that day comes, one thing NAPWA always stood for should not be forgotten. HIV is only a virus. The HIV epidemic happened because of racial and gender inequality, discrimination against sexual minorities, increasing inequality in this country in economic and educational opportunity, and demagogic and divisive us-vs.-them politics that justify denying services to populations who deserve services and can more than repay them in increased economic and social productivity.
Chair of the Board of Trustees
National Association of People With AIDS