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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