AIDS Action Committee’s Blog

Let’s be clear. The silence described by the NY Times in HIV Rises Among Young Gay Men is the result of explicit policies of the CDC, which have hamstrung prevention efforts by rewarding poorly vetted cookie-cutter approaches and stifling innovation and efforts at community building.

In June 1992, the waning days of Bush 41, the CDC created Program Review Panels “to consider the appropriateness of messages” used by recipients of CDC funding to communicate with various groups. [Source.] The Review Panels were to take their guidance from federal law which explicitly prohibited education “designed to promote or encourage directly, homosexual… sexual activity.” (It also prohibited messages designed to promote heterosexual activity but there are already plenty of supportive messages about heterosexuality throughout the culture.) The universal response of anyone who has prepared prevention materials in light of these Program Review Panels is that the Panels have a chilling effect on prevention work. Any comparison of the gay prevention efforts of the 80s to those of the 90s clearly illustrates the move away from condom distribution and edgy, graphic messages designed to catch the attention of a younger gay population.

Systems produce the results they were designed to produce. It should be no surprise that dramatic increases in HIV infections have resulted from the prohibition of messages positively portraying gay sexual activity.

The Times is right–there is a silence. But the silence has been imposed by the government while it is the gay community that is increasingly paying the cost.

This week, the New York Times ran an op-ed and a story which together illustrated the challenge facing AIDS advocates. The op-ed made the point that poor countries in Africa get too much money for AIDS and not enough for some basic infrastructure which would have more impact on people’s health. [Read the op-ed.] The story described the precipitous increase in new HIV infections among gay men under 30, particularly gay black and Latino men—between 2001 and 2006 the increase was more than 30%. [Read the article.]

I’m certainly not arguing against investing more money in improving the infrastructure in poor countries—I do challenge the zero sum mentality of the op-ed. And the story makes clear the challenge of reducing new infections. After all of the money and the studies and the social marketing etcetera, the issue remains sex: who should have it and what kind exactly they should have. Much greater strides have been made in combating intravenous drug use-related transmission of HIV than have been made in curtailing sexual transmission. Look at the numbers—new infections are increasing in young gay men, particularly young gay men of color. Because of cultural taboos, we have been unable to stop everyone from engaging in unhealthy sexual behaviors with AIDS-specific funding. How could anyone imagine it could be done in the more general context of public health?

God, yes, fund the infrastructure needs. But don’t do so at the expense of sexually active people here and abroad. And let’s not wait till AIDS sickens as many people as dirty water before we figure this out.

Well it seems the evangelicals have finally found a way to bring AIDS into their special fold of Christian charity—they skip the part about gay men. Apparently, if AIDS is contracted by drug use or unsafe sex between heterosexuals, or better still a transfusion or perhaps maternal-child transmission, God not only permits but encourages ministering to its victims. And, there’s the international waiver—if you’re outside the USA, preferably in some poor benighted African country, it doesn’t matter how you contract it. There’s room for all in the fold. But there still doesn’t seem to be any room at the inn for gay men in the United States.

Sadly, that seems to be a pretty accurate description of this administration’s position as well. Restrictions on proven interventions have essentially read the gay community out of prevention efforts and have resulted in–drum roll please–an increase of infections in gay men! Of course I’m sure that when the CDC does finally, officially, release its increased estimates of annual HIV infection we won’t hear anything about that—but I predict there will be much conversation about the refusal of gay men to abandon their “ways” and significant hand-wringing over their unwillingness to become heterosexuals. Unspoken, perhaps, will be the phrase “Serves them right,” but many of us will hear it nonetheless.

During the past month, some staff members at the AIDS Action Committee in Boston have been repeatedly contacted by sales reps from a company called Smart Genetics, which makes a test called HIVmirror. They’ve been asking for community input and help to spread the word about the HIVmirror.

The test analyzes the genetic structure of a person’s DNA to look for two specific mutations known as CCR5-Delta 32 and CCR2-64I.

In persons who are already infected with HIV, these mutations have been associated with slower-than-usual progression of HIV infection to AIDS. The mutations may also reduce the chances that an HIV-negative person will become infected.

Smart Genetics is marketing the HIVmirror test directly to consumers for $99. Their sales angle is that people will have additional “peace of mind” if they know they have genes that would slow the progression of HIV infection.

However, I have some serious concerns about the test and its marketing:

1) First, I don’t see any reason why a person should order this test on their own, without consulting a doctor. The test doesn’t indicate whether a person is HIV-positive or HIV-negative, so the concerns about confidentiality and stigma that motivate people to have anonymous HIV antibody tests wouldn’t apply here. There’s no stigma about having genes that might make a person a slow progressor.

2) Perhaps more important: What practical use would this information have to a person?

For HIV-positive persons: Although the presence of one or both genes might slow HIV progression, an HIV-positive person would still need to see their doctor regularly, have CD4 and viral load tests several times a year, and follow the guidelines for when to start or change HIV treatment. One danger is that, if an HIV-positive person concluded from the test that they were a “slow progressor,” they might decide to go it alone and not see a doctor regularly nor start treatment in a timely way.

For HIV-negative persons: If a person learned that they had one or both of these mutations, they might mistakenly think they were “immune” to being infected with the virus. This might lead to greater risk-taking that could ultimately increase their risk of becoming infected.

3) If a person were to have this test, I think they should do it under a doctor’s guidance. The doctor could provide context for the results, with the appropriate cautions for both HIV-positive and HIV-negative persons. But my guess is that most doctors would view the test as unnecessary, since it has few, if any, practical implications for preventing or treating HIV. That may be the reason why Smart Genetics has chosen to market direct to consumers – if you can’t find a compelling reason for a doctor to order a test, try marketing to the patient.

The POZ web site has an article from earlier this year about the HIVmirror test, with more opinions about the concerns that have been raised about it. Here’s the link.

As someone who has lived a relatively sheltered life, I always viewed homelessness as a problem that was addressed by legislators and officials. It was a problem that never seemed to affect me personally. It had to do with money and resources, and not with me.

And then I went to hear speakers from Youth on Fire, a program that works with homeless youth. Listening to these young people talk about their lives, I was shocked by how like me they were. They were people. They were my peers.

Shunned by a society that has no system of social support in place for them, kids are being placed in danger. My generation is in danger. These people, by virtue of being homeless, are three times more likely to have any type of chronic disease, including HIV/AIDS, than are those who are not homeless (http://www.nationalhomeless.org/publications/facts/HIV.pdf).

What’s worse is the cycle: those who are homeless are at high risk for HIV/AIDS and those who are HIV+ are at high risk for becoming homeless. Without social supports in place to stop this cycle, future patterns are, unfortunately, easy to predict. There is clearly a place within this issue for the legislators, but they cannot be alone. We need a system of people caring about people, not just of laws. It is time for us as a country to care about each other and stop detrimental patterns before they grow beyond our control.

Youth on Fire (Y.O.F.), a program of Cambridge Cares About AIDS, is a drop-in center for homeless and street-involved youth in Cambridge, MA. Through Y.O.F.’s Speaker’s Bureau, members share their experiences and perspectives as well as  provide advice to youth providers and students in the hopes of improving the services offered to high risk youth in the Boston area.

Was anybody else bombarded with email alerting us to the uncomfortable truth that our mothers are having sex and our daughters will someday soon? If nothing else, my inbox last week reminded me of what many people work to deny - that our mothers are sexual beings. Take that one logical step further and we see why HIV preventionists and reproductive rights advocates are taking this opportunity to talk about sexual health and safety.

In case your inbox was neglected: Planned Parenthood reminded us to “Protect Her Future. Protect Her Health.” by (HPV) vaccinating our daughters. The Global Campaign for Microbicides didn’t miss a beat in taking Mother’s Day as an occasion to remind our legislators that mothers, and all women, around the world need new prevention methods like microbicides to protect themselves, their partners, their children, and future generations.

Though it was a couple degrees of separation to get there, I commend these groups for creatively drawing attention to that fact that mothers and daughters are also women who have sex – and are thus vulnerable to HIV and HPV - and that they deserve access to current and future technologies that give them the power to keep themselves healthy.

Today, March 15, is a day of bountiful and diverse celebrations, amidst National LGBT Health Awareness Week (Mar. 11-17).  It’s the Ides of March, the height of NCAA basketball’s March Madness, the opening of the LGBTI Health Summit and Medical School Match Day, when medical students receive an envelope inviting them to join a medical institution.

For them, it means much excitement and little sleep.  For us, it’s a day of hope.  What do you want from physicians as the next generation is identified and paired with hospitals? Here’s my short list:

Be diverse, like the U.S., and speak the same language – not just share a native tongue – with your patients.  Advise everyone who’s sexually active to receive STD testing.

Neither erase lesbians from condom discussions nor include them for reasons that don’t resonate with them.  Ask questions, and talk about gloves and dams.

Let someone be tested for HIV and not have their name disclosed.  Remember that everyone is at risk for HIV/AIDS, and all conversations should be fair game when they arm people to make the safest choices they can.

Welcome gay and other men who have sex with men to discuss and ask questions about sexual practice without judgment and stigma so that they can get the best medical counsel.  And let’s remember bisexual people, too.

Address trans people by their preferred name, pronoun and gender and know that some men need pap smears and some women need prostate exams.  Don’t forget the intersexed people, either.

LET ME GET THIS STRAIGHT: last week the Bush Administration saw fit to increase funding for abstinence –only-until-marriage programming by 28 million dollars while simultaneously eviscerating healthcare funding for poor children. That means our government is putting kids at greater risk of HIV/AIDS, pregnancy and cervical cancer but is taking resources away from the very programs that will help these kids when they get sick and/or pregnant.

Young people need access to comprehensive health and sexuality education to make responsible decisions, prevent disease, and reduce unintended pregnancies so that they can lead healthy lives. Abstinence-only-until-marriage programs masquerade as education but in fact promote sexual ignorance. As a member of the AIDS community -and a new mother- I think that abstinence is a very important choice for young people. But it must not be presented in such a way that the health and well-being of young people are placed at greater risk.

For example, abstinence-only-until-marriage programs promote ambivalence about the efficacy of condoms. Under federal guidelines, these programs are prohibited from even discussing condoms except to emphasize their failure rates. Public Health professionals have spent the last 25 years trying to convince sexually active people of any age to use condoms to protect themselves. Besides – there is no evidence that these programs work. In fact, they have not been proven to delay the initiation of sexual activity, reduce the frequency of sex or the number of partners. To have the progress against the spread of HIV/AIDS undermined by programs that put ideology ahead of safety and health is heartbreaking and unconscionable.

Massachusetts currently accepts federal abstinence-only-until-marriage funds. We must join California, Maine and New Jersey and halt use of these funds immediately and reject any further funding. The health and well being of our young people depend upon it.

Word has quickly spread that (another) Phase III microbicide candidate has been taken off the shelf. Cellulose sulfate, an attachment inhibitor, may have been causing increased risk for HIV transmission in trials being done at several sites. As a result, these trials have been halted.
This news follows the closure of another phase III trial in August 2006. As Keith Alcorn wrote yesterday, that trial was showing “a lower than expected rate of HIV infections”. Though this is a less controversial reason for trial closure, both were cellulose sulfate and showed promise as contraceptive gels.
This is quite disheartening news for those of us working diligently to make microbicides a reality for the millions of women and men at risk for HIV through unprotected sex. Microbicides, a topical gel that could be used inside the vagina or anus during intercourse to reduce the likelihood of HIV transmission and possibly other STDs, would provide a non-barrier risk prevention option to the rather slim arsenal of HIV prevention options that currently exists.

Advocacy will now focus on the three products (all are not cellulose sulfate based) still in Phase III development, one of which is nearing completion and expected to have results by the end of this year. In the meantime, the microbicide advocacy community will continue to call for the necessary funding and support to meet the highest standards in HIV clinical trials and to put forth a greater inventory of promising candidate products.

Despite very little if any concrete epidemiological data to support the assertion that bug-chasing (people intentionally seeking to become HIV infected) really exists, this urban legend continues to surface. In today’s Boston Metro an article about the shameful statistics of homelessness among gay youth a throw-away comment about the phenomena was highlighted and pulled out in a special box in the article labeled “Contracting HIV.”

When pressed, the source for the article agreed that there is only anecdotal evidence that homeless queer youth claim to be seeking HIV in order to receive services, and that in fact, these claims are likely to be cries for help rather than actual plans of action. Adolescence is by its very nature a time for drama, and what’s not more dramatic than alleging suicidal intentions? I don’t doubt for a minute the desperate nature of being a homeless queer kid – I just don’t want us all to overreact and further marginalize and demonize homeless queer kids by taking everything they say too seriously. And, the truth about homeless queer kids is that an estimated one-quarter to one-third of them report engaging in survival sex during their time on the streets. That’s a horrifying enough reality without over blowing anecdotal cries for help.

And as for the hullabaloo that there is a community of gay men out there seeking HIV, again, I think the evidence is incredibly limited. I’ll even agree with Andrew Sullivan for a moment in his brilliant piece on Salon.com refuting claims made in Rolling Stone Magazine in 2003.

There’s more than enough work to be done to support queer youth and support people at risk for HIV without making up scary stories.