Monday, June 29, 2009

What happens when an entrenched system faces competition?

We found some of this out last week. For years, I have been working with a diverse group of people to promote that all people know their HIV-status as the starting point for stopping the spread of HIV (see for more about this work). We have worked with HIV/AIDS organizations in Illinois, DC and western Kenya. I have seen people who want to volunteer their time to helping stop the spread of HIV, and be told that they can deliver meals once a week. I’ve met with senators, elected officials, and other government folks to see what we can do to make testing more accessible – including making tests more portable, and removing the pre-test history questions from the process. All to no avail, despite conflicting messages and policies between federal and state authorities. There has been a protective nature to tests and testing that borders on territorial. I have seen people turned away because there are not enough tests, while also hearing that testing is being under-utilized in other areas. I’ve seen “Catch-22’s” where there are no laws against distributing HIV-tests, but no access to acquiring tests. And I’ve seen panel discussions where organizations blame everyone else and call for National Strategies, but resist change. No wonder HIV continues to spread – the institutions need it to stay viable.

A chink in all of this took place last week. A few weeks ago, I heard about a home test kit that can be purchased on-line ( It’s not FDA-approved, but I ordered some anyway. We started to promote that we were going to be distributing these tests. Out of the blue, last week 8 FDA administrators got on a conference call to tell me to cease and desist. I responded that, unless there could be some kind of movement (speeding up FDA approval of home-test kits or removal of pre-test questions to name two possibilities) that I did not see why I should. Plus, after years of trying to reach people to see how we can make a difference, it took possession of these tests to catch attention. Now, a week later, there has been a meeting with one of these FDA people, plus the head of the White House office on AIDS and an MD within CDC who has done research to support greater access to and portability of tests. In talking with these folks, one thing is clear: the current system is not working. The other thing that is clear is that “AIDS, Inc.” is as entrenched in maintaining the status quo as anything else that is out there. Perhaps what has been most interesting is the extent to which people have been forthcoming with information, although there is tacit agreement that much of this information is “off the record”.

Interestingly, as we promoted and collected signatures for home-based HIV-testing (or, perhaps more appropriately, since we are really looking to promote a creative dialog, we should call it “portable testing”), it has been mostly the white gay community that has been the least receptive to this idea. I think there are two possible theories: the gay community still very much carries the scars and trauma of AIDS, and/or AIDS was the first legitimate social institution to have openly gay people leading. It has also been gay people that have said we have to do testing within the law. I maintain: when did any good laws come about without the bad laws being broken?

So, what to take from this:
• Viable options creates more opportunities for change than simply staying within the status quo.
• There has not been a real new idea regarding HIV-prevention. “Portable testing” might be just the ticket to spur new, creative dialog. Look at the doors possession of such tests opened.
• When you can catch people’s attention, you can take a 30 second conversation and turn it into a 5 minute conversation. For example, when someone says he/she is against home-testing, consider where these might be useful (i.e. for women who take home-pregnancy tests, or for repeat testers, or for couples where one partner is positive). I like to envision doing college classes, with visualizations of testing, and then giving options for testing.
• For HIV-testing organizations that say they want to empower people, I say you don’t empower by limiting options.
• On the sly, I was also told by a reliable source that the US-approved HIV-tests are inferior to what are used in other parts of the world.
• I have also now seen research that shows:
o 93.6% of people who do home-sample collections can do it accurately. 95% of clinics do it accurately. So the issue of poor sampling at home is minimal.
o The majority of people who do home-sample collections (the Home Access mail-in tests) are people who would not go to an MD or clinic for an HIV-test).
o People who have access to testing of any type are 47 times less likely to contract HIV.

Where do we go from here? I’m going to be following up with exerting pressure to speed up and open up approvals for options. I’ll also see how we can help facilitate community dialogs and pilot programs. One of the messages is that we don’t need a multi-million dollar marketing campaign to raise awareness; we need a 2 year campaign to get everyone to know his/her status, and we need to change the starting pronoun from “them” to “us”, including all of us.

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Friday, June 19, 2009

Self-administered HIV-testing and the AIDS Inc. Racket

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 Join us.

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Wednesday, June 03, 2009

Every great cause begins as a movement, becomes a business, and eventually degenerates into a racket.
--Pat Buchanan
When did the AIDS movement become a racket? And what is it going to take to go back to being a movement. At this point, HIV/AIDS organizations are clearly a business. The degeneration to being a racket has happened perhaps most clearly in the arena of HIV-testing as organizations seem more invested in reporting demographics and meeting numbers than doing what they can to get everyone to know his/her status. This is not to say that the people who work in these organizations are conscious of this. I think it is more a matter of a corporate “groupthink” that takes over.
Here’s what I mean:
At a meeting of AIDS organizations last week that is planning a series of events around National HIV-Testing Day (June 27), I mentioned that one of the things I am working on with some colleagues is advocating for FDA approval and use of home-based HIV tests. The response I got from was swift and harsh. The people that work for various organizations, from public health to HIV/AIDS to glbt support, were adamant that home-based HIV-testing was a public threat, that people NEED counseling, and that with home-based testing there is no way to track and report accurate numbers (as if estimating between 40-65,000 new cases a year is “accurate”).
Many of the reasons for opposing home-testing are familiar, and not unjustified. Certainly, many people who do go for HIV-testing do benefit from education and counseling. And, yes, from a public health standpoint, it is somewhat important to be able to track the virus by knowing some of the demographic and transmission data. But the fact is that, as one person openly admitted, the reason I got that kind of reaction was that I was touching on people’s livelihood – jobs. Now, I am not against jobs for people that need them, but when they come at the expense of a mission, then we need to take pause and have a real conversation, something this group was not able to do at that time.
The fact is that the current system of providing HIV-testing is not accessible to the broad community. Clinic hours are limited, clinics are not always accessible, and certainly, despite pledges of confidentiality and anonymity, it is hard to maintain these in a public arena. Furthermore, the pre-test questionnaires can be off-putting, especially for people who are nervous about being too forthright about their lives. Consider the cases of people who have been scorned by family, church, or military because they were honest about themselves. To ask them to trust strangers in a clinic is a stretch. Personal physicians are another option but, despite Centers for Disease Control guidelines, this is not even close to happening routinely. I have heard a few stories of openly active gay men needing to explain why they are asking for HIV tests. In one case, the man was not offered an HIV test by two successive doctors despite a persistent rash (he subsequently was diagnosed with full-blown AIDS). The bottom-line is that even if the current system worked optimally it would not be easily accessed by everyone, and the current system hardly works optimally.

My own personal experience: after the above-mentioned meeting, I decided to see how the current public testing works, so I went to the local (DC) HIV-testing clinic. I got to the receptionist, and asked how I can get an HIV-test. He gave me a clipboard with a 4-sheet questionnaire to fill out. I said I don’t want to fill out any information, and he indicated three areas that needed to be filled out (including a place to put my name and signature). I returned a few minutes later, after scanning questions about my sexual identity, sexual preferences (meaning what kinds of sexual activities I engage in), and drug use, and said I did not want to answer any questions. His first response was that I could not get tested if I did not answer the questions, but that they were not going to be reported. I pushed the matter, saying that I thought the tests were anonymous. He called for another person to come over, who then said he would see if he could get someone to test me. A few minutes later the tester came and met me and took me back. Briefly, she was great – compassionate, understanding, and ever-so-gently trying to squeeze information out of me. After completing the test, I returned to the waiting room. While waiting, she called two other people into her office, asking “are you here for testing?” Basically, by the time the tester finally meets with a person, many people in the waiting room know why you are there. In addition, despite the fact that the questionnaires are not mandatory, anyone who does not know his/her rights is not informed.
So I am now more convinced than I was before that the present system is not accessible to all people, and is actually somewhat intimidating. What we should be doing and will continue to do is to advocate for and even start to offer options for people. At a minimum, it seems there is fairly universal agreement that home-based testing could be useful for the following:
• Women who take home-pregnancy tests
• Couples where one of the partners is HIV+ and the other is HIV-
• People who have been tested before and like to make it a routine
• People who are feeling intimidated and or a need for complete confidentiality and anonymity, but are trying to be responsible
• People in rural and/or conservative areas where asking for an HIV-test raises suspicions
• People who want to be tested, but current testing systems cannot accommodate great numbers or are threatened with losing funding because of demographics.

For the next month, we will be stepping up our efforts to raise these issues and to advocate for more options.

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