Putting People First
Many moons ago, when a reporter tried to elicit a response to the AIDS crisis from the Reagan Administration’s White House press secretary, he was met with laughter. We were a joke to those in power. Surgeon General C. Everett Koop led the federal response to the AIDS epidemic, and the President remained mum. There was a time when we wanted those who represented us to help set the tone and educate the public from their platforms and use their legislative power to increase funding for research.
Yet when President Trump, in his recent State of the Union address, boldy declared the government was dedicated to ending AIDS in the U.S. in ten years, it rang hollow. We are older and wiser. As Editor At Large Hank Trout stated in his coverage of the announcement in depth this month’s Access to Care, no plan was offered—just a promise. And, oddly, or perhaps not so oddly, he made this announcement without mentioning actual human beings. He did not mention us who live with HIV/AIDS, nor those who love us, nor anyone at risk—you get the picture. It is a way of envisioning HIV/AIDS without thinking about the people involved.
Without the human element, HIV/AIDS becomes a pawn on a chessboard, a game for those in power, and for the listening public, the issue becomes abstract. Who are these people buried in the statistics? Over the past decade, the HIV community has responded—we are just like everyone else! We may have different needs and we may be facing different barriers, but we are just like everyone else. We bleed the same. And we are people first, patients second. It’s not big news, but apparently we need to keep saying this.
Medical doctors, and HIV and human rights advocates, Arash and Kamiar Alaei know very well how to put people first, even when leaders are trying to make them disappear. The brothers, who were interviewed by JoAnn Stevelos and photographed by J.D. Urban for this month’s cover story, weigh in on fighting the epidemic in New York as well as back home in Iran and other countries. Says Arash Alaei about putting people first: “This is the beauty of medicine and health. Doctors want to reduce pain. Pain doesn’t have culture. Pain is pain in any culture. HIV does not have culture.” Kamiar Alaei adds, “We use a patient-centered approach that promotes empathy. If we listen to our patients they will tell us what they need from us. Our core values of respect and empathy help break through stigma in many different cultures.”
Here at A&U, we put people first and this issue is no exception, as we offer features on advocates who are wrestling (or wrestled) with a political and aesthetic question: How do we represent the lived realities of individuals living with HIV/AIDS? Hank Trout interviews filmmaker Cassandra Roberts, Literary Editor Raymond Luczak interviews writer Nicola Griffith, and new contributing writer John McIntyre looks back at the work of Vernon “Copy” Berg, who died in 1999.
Sometimes it felt like we were begging for crumbs—for representation, for a mention that we exist, for any slice of the budget, any minute of attention to the cause, for just one treatment that worked.
Now we know it should have been “bread and roses” from the start. In 1910, women’s rights activist Helen Todd popularized the political slogan in an article: “Not at once; but woman is the mothering element in the world and her vote will go toward helping forward the time when life’s Bread, which is home, shelter and security, and the Roses of life, music, education, nature and books, shall be the heritage of every child that is born in the country, in the government of which she has a voice.”
And, as we call for bread and roses, we will continue to put people first!
David Waggoner is Editor in Chief and Publisher of A&U, the first national HIV/AIDS magazine in the U.S.