Los Angeles, Calif. -- This week marked a bittersweet footnote in the thirty-plus year history of the domestic HIV/AIDS pandemic. The week started with President Barack Obama including "the promise of an AIDS-free generation" in his State of the Union Address. But the week ended on a painful note for our movement. The National Association of People With AIDS (NAPWA) ceased operations.
"NAPWA has been the leading voice for people living with HIV/AIDS," said Leisha McKinley-Beach, the director of stakeholder engagement and technical assistance at the Los Angeles-based Black AIDS Institute. "That remarkable voice sounded a battle cry that HIV positive people were here and they matter."
NAPWA was founded thirty years ago in 1983. It was first, the oldest and perhaps most trusted voice for the 1.2 million people living with HIV/AIDS (PLWHA) in the United States -- many of whom are disproportionately Black and low income.
African-Americans and other Black communities represent only 14% of the nation's population but account for nearly half -- some 44% -- of all new HIV infections, according to the Centers for Disease Control and Prevention.
NAPWA challenged the framing of the new disease in the dark days of the epidemic in the 1980s. NAPWA rejected the then-common descriptions of "AIDS victims" and embraced "People Living with HIV/AIDS." The group also founded National HIV Testing Day in 1998, the nation's first national HIV awareness day, among many other achievements.
Another early achievement: NAPWA demanded that PLWHA should 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," said NAPWA's board of directors.
"NAPWA had an historic role for all Americans who have lived with HIV/AIDS," said Jesse Milan, Jr., chair emeritus of the Black AIDS Institute. "We owe a great debt to its brave founders, staff and board members. They paved the way for PLWHA across the nation to live longer and healthier lives -- and free of stigma and discrimination."
NAPWA's transition comes as the domestic HIV/AIDS pandemic is at a crossroads. There is an expanding suite of biomedical HIV prevention strategies, such as "treatment as prevention" and pre-exposure prophylaxis, or PrEP. There is a general bipartisan political consensus on funding programs such as Ryan White and the AIDS Drug Assistance Program. PLWHA also will enjoy historic access to treatment and care, thanks in large part to President Obama's re-election and the Affordable Care Act.
Unfortunately, many obstacles remain on the road to "the promise of an AIDS-free generation." Black Americans continue to suffer from many HIV-related health disparities. Many of our communities are "fighting" the epidemic at the same time they face discrimination, stigma, homophobia, unemployment and/or homelessness. Infections are rising faster in the Southern states -- which are disproportionately Black and low income. Those state governments are overwhelmingly conservative and against expanding health care access.
"NAPWA will be missed but its role should never be forgotten," added Black AIDS Institute chair emeritus Jesse Milan Jr.
"The founding mission of NAPWA is still relevant," said Black AIDS Institute first vice chair Grazell R. Howard. "Keep up the good fight!" are the final words in the NAPWA statement.