Box Turtle Bulletin

Rethinking HIV Testing

There is no good reason for any American becoming HIV positive today.

Which is not to say that there are not a lot of very understandable explanations why an individual might become infected. Social pressures, education, self perception, culture, diminished self worth, drugs and alcohol, and even trusting the word of a careless liar all play their part in the instances and circumstances that lead to poor choices and HIV infection.

And so infection rates stay consistently high in the gay community, and astronomical in some sub-populations. A study of HIV infection rates in Chicago found infection rates of over 17%* of gay men in that city. When looking at subgroups, the statistics become even more troubling:

Thirty percent of gay black men in Chicago tested positive, the study showed, while Hispanics and white men had rates of 12 percent and 11.3 percent, respectively.

A quarter of blacks aged 18-24 tested positive. More than 37 percent of blacks aged 25-34 – the highest of any age group – tested positive. The numbers are similar to national figures.

These are rates of infection that are simply unacceptable. And there\’s no reason, no justification, for 37% of any ethnic or age group to be infected with a virus that is detectable and preventable. Considering the weath in this nation and the billions spent on bailing out bankers and car makers, that black gay men have rates this high raises hints of racism, homophobia, and elitism.

But there is an explanation, one that makes sense to me; these men didn\’t know they were infected. Half of the infected gay men – and two-thirds of infected black men – were unaware of their HIV status.

Why?

Because they didn\’t get tested. They were “worried about the result.”

I understand that worry about what it means to be HIV positive can be a strong disincentive to get tested. As long as you don\’t know, you don\’t have to deal with it.

But I think this report, like all those I\’ve seen from the AIDS establishment, misses a component that is present with every HIV test that I or anyone I know has taken.

It isn\’t just finding out whether one is HIV positive. It\’s also going to some clinic (when they are open), filling out questionnaires, being grilled about the intimate details of your sex life, and then sitting in a waiting room where you are sure everyone is staring at you before being called into an office and being told by a total stranger whether you have a life-changing disease and, if so, reporting your name to the government.

It\’s an unpleasant process. And frightening.

And I think it might be time to begin considering a change. I think it\’s time to consider allowing people to test themselves in the privacy of their own home.

I know there are strong objections to this notion.

There is fear that inexperienced users will make mistakes and get false conclusions from improperly handled tests. There\’s also fear that at-home tests would not be sensitive enough to assure accurate results or may be too expensive.

But the current oral swab tests are pretty darned easy. If some scared teenage girl who missed her period can pee on a swizzle, surely a gay guy can run a swab over his gums.

Also, the oral tests are over 99% accurate. And there\’s little reason to think that they would be significantly less accurate in one\’s home than in the clinic. And if we as a city, state or nation, can afford to pay the clinic administators to provide free testing, I’m sure we can come up with some scheme to get the prices on tests affordable by those who need them; it just makes economic sense.

I will concede that some guys will ignore the fact that these tests only tell you whether you were infected before a three month (or so) window. Some will assume that a negative test means “100% negative today”. But this is also a misconception that can occur in a clinic and can be mitigated by careful packaging.

But the biggie reason given for opposition to the public availability to HIV tests that one can take and home and get immediate results is that in a clinic setting those who test positive can get counseling.

I appreciate the need for counseling. I\’ve even argued the merits of this approach.

But it\’s not working, folks. There are still thousands of guys out there that have been infected and do not know it. And they are not going to come into your clinic to find out. And maybe, just maybe, it\’s because they don\’t want to be subjected to your counseling.

I have come to believe that many of these “I don\’t know” guys might know their HIV status if they were able to anonymously purchase a little kit at the drugstore, take it home, and know the results in 20 minutes.

Yeah, some will freak out. And panic. And there won\’t be a counselor in front of them.

But they will at least know their HIV status.

And if they were provided with the option to immediately call a hotline for information and counseling, they might do so. Or they could go to a clinic. Or go online.

But they would know. And there\’s a very good chance that they would not then go out and infect someone else.

And this approach would be useful not only to unknown virus carriers, but to those they come in contact.

I think that many a gay guy – or black woman – would say, “Yes, I know you say you\’re ‘clean\’. But put this in on your gums and get comfortable because nothing is in going in anything for the next twenty minutes.”

It’s is bound to reduce infections better than the “baby, just trust me” method.

I don\’t doubt the sincerity of those who wish to keep HIV testing in carefully controlled environments. And I am sure that some readers will object to this proposal, fearing that it would be a catastrophe.

And I\’ll even grant that I may be wrong. Perhaps allowing people control over their own HIV testing would result in more problems than it solves. Maybe I’ve understated some concern or forgot some consideration.

But with infection rates – especially unknown infection rates – as high as they are, it\’s time to look for new solutions. It\’s time to ask the question. And it\’s time to start the conversation over whether personal access to HIV tests could help bring down the incidences of unknown infections and help stop the spread of this disease.

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* Though higher than our estimates of about 12% of gay men, this is consistent with our estimates. HIV infection rates in black gay men is far higher than other ethnic subgroups and with a population that is 37% African American, this skews the local average higher than the national average.

Addendum: This commentary does not attempt to address the specifics of the African-American community. I’m not qualified or adequately knowledgeable to address the exact circumstances leading to disparity in infection rates between ethic subgroups or to advance targeted solutions. Rather, this commentary seeks to start a discussion and new thinking about the lack of testing in infected populations of all races. For more information directed at HIV/AIDS in the African American community, see the Black AIDS Institute or the Minority AIDS Project.