Seeing ‘How AIDS Ends’

The book offers incredible perspective. Among the most powerful stories was the one from Jeanne White Ginder, the mother of Ryan White. She wants nothing more than to see the end of AIDS so she can know that her boy did not die in vain. The Whites' story is one of illness, discrimination, and struggle: Ryan, who was born in 1971 and died 18 years later, was born with hemophilia and took a drug that was later found to be laced with HIV. His family had to fight discrimination, threats to their safety and health care, and stigmatization, and eventually found enough allies in Congress to pass a law that bears Ryan's name. Although not available to everyone and far from a complete safety net, it's a payer of last resort for poor and uninsured individuals with AIDS.

In addition to the stories that make you cry, the stories that make you hopeful (from Ambassador Mark Dybul, the Director of the Global Fund to Fight AIDS), and the stories that teach you about viral load, treatment, and medical breakthroughs (Drs. Paul Farmer and Robert Gallo, the latter of whom discovered HIV as the cause of AIDS and developed the first HIV blood test), the greatest intellectual and strategic contribution of this short anthology is its explication of the role that stigma plays as a barrier to health care and eradication.

The most direct and sharpest paper on this topic comes from the famous activist Cleve Jones. His article tells us what we already know — that we need money — but argues that money is not the greatest barrier to ending AIDS. It's stigma, the malodorous social stigma that certain laws, many people, and, unfortunately, many people in the LGBT community, attach to HIV-positive individuals. As Mr. Jones writes: "Stigma keeps HIV underground. It prevents people from getting tested for the virus. It makes them too afraid to disclose their status and seek the medication and services that would otherwise save their lives."

Stigma allows conservative legislators to drag the public along when they want to overreact to HIV. For example, the fear surrounding HIV in the early 1990s helped scores of states pass specific HIV transmission laws and cemented a prosecutorial practice of charging an HIV-positive person who has sex — even safe sex — with a partner without prior disclosure with aggravated assault. Now, when someone maliciously tries to spread the disease, that's criminal; but there are many problems with these laws and practices. First, they treat all HIV-positive individuals the same — from the person with a 50,000 viral load (amount of virus in your blood) to the guy who is undetectable. But, you can't treat these two individuals the same because each carries a different likelihood of transmission, which is an essential element of the crime. Second, the manner in which some of these laws treat all HIV-positive individuals the same violates due process: prosecutors simply offer proof that HIV can be transmitted through intercourse, not that this particular defendant's HIV is likely to be transmitted under the standard and given the unique factors that constitute his HIV.

Stigma also makes it harder for us to talk about these issues in a civil manner. Comments to online articles about HIV are riven with hate, ignorance, and silly statements like, "there is absolutely no way to protect yourself when you're having sex with someone who has HIV." Even our own community, which lost so many young men to this epidemic, is fighting an internecine fight between two types of people who feel HIV can never touch them: those who feel invincible and engage in unsafe sex practices and those who have no concern for the HIV-positive community. Just ask Ryan White's mom if contracting HIV is all about personal responsibility. 

Paint-the-Castro-Red-LogoStigma also has the more subtle, but overpowering effect of keeping HIV hidden, locked in a closet. This could be the worst effect of stigma, as Lambda Legal's Scott Schoettes and others have said. Take the gay rights movement as an example: Years ago, when we were first getting started (pre- and post-Stonewall), a great debate raged about the value and importance of coming out. Some counseled caution, worried what being open would do to our jobs, our families, and our safety. Others said that coming out was not only a political statement itself, but a necessary prerequisite for freedom from discrimination: if you are too ashamed of who you are to come out, you are complicit in the discrimination foisted upon you. The problem is that stigma is not only perpetuated by our absence from the public sphere, it keeps us away, forcing us into a vicious cycle of fear, discrimination, and the inability to do anything about it. Perhaps the HIV-positive community needs to focus more on coming out and build on its own "we're here, we're queer, get used to it" movement that need no longer be so dominated by the AIDS emergency. 

We can all help end the stigmatization of the HIV-positive community. It starts at home, in our hearts, where our own community must come to embrace and include those who are HIV-positive. We can help by "Painting the Castro Red" on World AIDS Day or speaking with our legislators or donating to AIDS services organizations or working with AIDS patients. We can point out anti-HIV behavior just like we point out anti-gay behavior. We can create safe places for the HIV-positive community to come out.

How AIDS Ends allows all of us, not just HIV-positive individuals, to engage in this discussion and to stand in the shoes of those we know and love, but can't always know what it's like. It allows us to join in the amazing and necessary work the SFAF is doing everyday. It allows us to see a bright future and suggests how we might forge a path to this difficult, but eminently attainable goal — the end of AIDS, for everyone.


Ari Ezra Waldman teaches at Brooklyn Law School and is concurrently getting his PhD at Columbia University in New York City. He is a 2002 graduate of Harvard College and a 2005 graduate of Harvard Law School. His research focuses on technology, privacy, speech, and gay rights. Ari will be writing weekly posts on law and various LGBT issues. 

Follow Ari on Twitter at @ariezrawaldman.


  1. Alexander says

    Now people can get tested in their own homes do it before you DO IT eh? You want to be done with pesky condamns well get those at home testing kits and try to be a monoganympho please.

  2. DW says

    AIDS has not ended. Judging by the degree of denial in our community, HIV (and drug-resistant gonorrhea, and other yet-to-be-identified STDs) will be with us for a long time. Irresponsible concepts like “barebacking” and “breeding” are now mainstream, and becoming “poz” has even been eroticized. I recently came across a porn video entitled “Infect the boy.” Do we have such short memories? Are we so full of self-loathing that we seek to deliberately propagate an incurable disease among our gay brothers? Are we utterly unaware of the vast devastation that HIV/AIDS has rained down on men, women and children around the world?

  3. randall says

    Want to end AIDS in our community? Stop doing anal. Yes, it is as simple as that. All the rest is a distraction.

  4. dms says

    The frustrating thing about HIV is that there are so many people who seem to WANT to get the disease or completely disregard it. I hear about people who are “cum dumps” or want bareback sex on grinder and various sex sites. HIV was a tragedy in the 80s. Now, when I’m writing checks to APLA, etc. I wonder. Why am I still having to do this?

  5. Wilberforce says

    Well now, thirty years after the fact the SF AIDS Foundation is finally asking the question. Isn’t that just adorable.
    Given the self hatred of this community, one book won’t do any good. People don’t read books anyway, and of course the issue will never be discussed on either of the gay TV stations.
    The steps to stop hiv have always been obvious: condoms always, testing, sero grouping, confronting rampant internalized homophobia, open discussion of the issues, and demanding adult standards in the community.
    Queue the ghetto crowd to change the subject or scream that it’s every man for himself.

  6. Hank Plante says

    Thanks for the nice review, Ari. Contributing a chapter to this book was a doubled-edged sword for me. Writing it brought back so many memories from when I was one of the first TV reporters in the country to cover AIDS. But it also filled me with hope about the new treatments which we wrote about in the book.
    Best Wishes,
    Hank Plante

  7. andrew says

    @Randall: I don’t thimk that people have to stop “doing anal”, they just have to “wrap it up”. PUT A CONDOM ON IT!

  8. anon says

    Well, a cure would help. A vaccine would be nice. There’s only been two new vaccines released in the last 20 years. Medical progress is grinding to a halt.

  9. Randy says

    “a long life is a prerequisite for the enjoyment of rights and the good life”

    No, it certainly is not.

  10. jamal49 says

    Would it be so. Yesterday, there was an ad that 1 in 5 gay men in NYC are HIV+. I don’t know if that is true or a scare ad, but it depressed me so much. Having seen this horror from the very beginning, I only hope that guys realize that it ain’t over ’til it’s over and even then it won’t be over. Put a condom on it!

  11. Nathaniel Siegel says

    New York City Public School Curriculum for H.I.V. / A.I.D.S. Prevention

    HIV/AIDS Curriculum Overview 2005-2011
    Grades 7-12: Adolescents learn to avoid alcohol and other drugs, which may impair their judgment and put them at increased risk for HIV/AIDS infection. They are strongly encouraged to abstain from sexual intercourse. Some lessons also address methods of prevention, including the correct and consistent use of latex condoms, which can greatly reduce the risk of HIV/STD infection among people who are sexually active. Lessons also address HIV testing and explore how HIV/AIDS has affected our society.

    HIV/AIDS Curriculum Overview 2012
    Grades 6-12: Some lessons include information on HIV testing and address methods of prevention, including the correct and consistent use of condoms, which can greatly reduce the risk of infection from people who are sexually active.

    Help change some to all. Please teach all New York City public school children and teens the proper use of a condom to prevent H.I.V. / A.I.D.S. in 2012.

    In the USA, you need to be 13 years old before September to start 8th grade.

    Infected and unaware: HIV hitting America’s youth

    Young people ages 13 to 24 account for 26 percent of all new HIV infections, according to the report by the U.S. Centers for Disease Control and Prevention, which was released on Tuesday in advance of World AIDS Day on December 1.

    In 2010, 72 percent of the estimated 12,000 new HIV infections in young people occurred in young men who have sex with men, and nearly half of new infections were among young, black males.

    “We are particularly concerned about what is happening with HIV among young black gay and bisexual men,” Fenton said. “They account for 39 percent of all new infections among youth and more than half of new infections among young men who have sex with men.”

  12. Bill says

    @Alexander: nobody should assume that an HIV test that turns out negative implies that unprotected sex is safe – there is a time interval between when someone becomes infected and when a test can detect it. The interval depends on the test, but can be weeks or months for some tests. Before even considering unprotected sex, both partners should be monogamous for long enough that a test can detect an infection. And don’t just count on a single test – there is a small chance that the test can be botched in some way.