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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 so 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 also 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.
The Friends of AIDS Foundation is
dedicated to enhancing the quality of life for HIV positive individuals and
empowering people to make healthy choices to prevent the spread of the HIV
virus. To learn more about The Friends of AIDS Foundation, please visit: http://www.friendsofaids.org.
TOGETHER WE REMAIN STRONG!
