There was a time when people with HIV and those around them were actively banging on and banging down doors of legislators, public health officials, and pharmaceutical companies. If there was even a whiff of a possible treatment there were calls, letters, and protests to get these treatments out to people with HIV even if the treatments had not completed their rigorous trial phases. At the same time, countless alternative and experimental treatments were being done. Some of these at worst were benign (such as massage, acupuncture, meditations, etc.), and for many of us, were instrumental to our need to stay actively engaged in our treatment. There were other types of remedies that were being promoted – such as drinking one’s own urine – that spoke to the desperation of the times. Clearly, the big enemies of the times were the politicians, federal regulators, and the corporate pharmaceutical companies that were slow on investing in the development of products that could help slow the progress of the virus.
At the same time, there emerged a similar fight around means to stop the spread of HIV Condom distribution and needle-exchange programs continue to be political and cultural hot-potatoes, as the liberal left tend to be for full-dissemination of these programs, whereas the conservative right tend to resist such programs, regardless of statistics. The two sides have become so polarized that they often don’t see the emerging new threats out there such as the energized gay porn industry that is increasingly marketing unprotected sex, and the rise in unprotected sex in bath houses, events like the International Male Leather convention in Chicago every Memorial Day, and in solicitations on-line. This, for much of the gay HIV-industry, is like the crazy aunt. We know she’s there and a member of the family, but we don’t dare speak too loudly about it lest our enemies catch wind of what’s going on. Some of this has to do with an AIDS bureaucracy that, to this day, still has not adopted its message about HIV/AIDS to meet the new realities – that HIV is not the deadly disease it was, but is very much something we don’t want to see spreading. This is really a topic for another time.
Despite all of this, however, there is one interesting observation that I have seen over the past few month, that I find both interesting and troubling: home-based testing. For clarity’s sake, home-based testing is simply a test that one can self-administer and get the results within 20 minutes. The technology for doing this has existed for twenty years – it’s a simple assay test that screens for HIV anti-bodies It’s the same test that one gets in a clinic. For many who are afraid to go to clinics to get tested because of the lack of anonymity (you can’t be anonymous if you have to go to a public place, can you?), or for those who live in areas where medical providers may not be warm to the idea of testing their patients, or for those who do home-pregnancy tests and want to also make sure of their HIV-status, or for those who are in mixed “HIV” relationships and want to simply do what they can to insure that they are being responsible, or for those who are willing to spend $10 for a test at home rather than go through a lengthy process, or for countless other reasons, the option of home-tests may be just the kind of thing that can help people access testing and ultimately slow the spread of HIV.
So, where’s the outrage? Why is the FDA making Orasure, one of the manufacturers of self-administered HIV-tests (the very ones that are used in many HIV-testing clinics) go through a lengthy process to get approval to sell these directly to the general public? Where are all those organizations and activists that are demanding more funds and looser rules regarding needle-exchange programs, condom distribution, and mobile testing units? Why aren’t they lining up demanding that the FDA speed up this process, just as they did with HIV-medications that we now know were sped through an approval process despite minimal positive effect and high toxicity? Because they are lined up against approval of greater distribution of self-administered HIV-tests, and for many of them, testing is a job.
I have been engaged recently in an effort to advocate for approval and dissemination of self-administered tests. Perhaps naively at first, I was taken aback by the resistance of HIV-testing organizations. Over time, as I have settled into listening to the reasons why there is the resistance, I have come to see that many of the concerns are not permanent barriers. But there is a lack of conversation stifles creativity and possibility. Furthermore, many of the concerns about home-based testing already exist: many people do not follow-up with care, and the current tracking system is not accurate (notice the sharp increase in the estimates of newly-infected last year from 40,000 to 56,000 – still just estimates), nor is it timely as it tends to track where the leading edge of the virus has already been, not where it is going next. Finally, if the current system worked well, there would be no need for this conversation.
Cynically, I have to say that what I have seen is this: the very people who were demanding more action twenty years ago to get government to do something, still will make demands, but have also staked a turf around testing and do not want to see that go away. I don’t think that there is a real consciousness on the parts of the people working in these systems to do this: I really think it is more a matter of a movement becoming an institution (and perhaps becoming a bit of a racket).
One of my favorite expressions: Insanity is doing the same thing over and over and expecting different results. Other than when applied to computers, this generally holds true. I am not saying that home-based, self-administered testing will solve all the problems. But I do think it can bring about a new level of dialog and passion. That’s what we are venturing into (see www.dontguess-test.com). Join us.