Musings on Religion, gay rights, HIV and systemic change

I was recently having a conversation with an ethics and communications professor from a Christian college. We had been informal colleagues about a decade ago, and developed deep admiration for each other despite some differences of opinions and beliefs about gay rights. What I always admired about Ken was that he never shut down conversations. He had me speak to his classes a few times about HIV and gay rights, always being honest about his beliefs but really encouraging others to find their own way and connecting back to their own beliefs and values. It was working with people like Ken that deepened my own sense of Quakerism and the belief that there really is that of God in all. 

As we were catching up, Ken was sharing with me his university’s current healthy challenges to try and be a presence for students of the 21^st century – not just who are more open to the lesbian/gay community (I’m not sure where they are with regards to the transgender community), but also with a generation that has different sexual morality than 20 years ago – while staying true to the university’s Biblical teachings. He stated it is a good healthy discussion, but not easy as people have deeply held beliefs and ideologies, and there are also many hurts both from the past and the present that people would like to help heal.

Then we turned to my current work, especially as it relates to HIV since that was what brought us together. I told him about my on-going efforts to bring about change as best I can with the HIV/AIDS system in the era of self-testing. I related recent experiences of finally getting a prevention planning group I am a part of to talk about self-testing, and about the institutional rigidity to not acknowledge that self-testing is out there (as evidenced by the fact that few HIV organizations tell their clients about it in person or on websites despite the fact that they are readily available and 1.5 million have been sold).

Ken shook his head and said he doesn’t understand what the big deal is and what all the resistance is about.  I reflected that I suspect some of it is not that dissimilar from what he was relating with regards to the university; that there is an ideological belief about HIV testing that is deep, at one point was THE only way to engage in testing, and is not used to being questioned. This is a collectively-held belief that has been culturally indoctrinated throughout the world as evidenced by the fact that, when I post articles and opinions about HIV and self-testing that challenge the status quo, the push-backs are always the same from all over the world. While sincere, many of these push-backs (people need counseling, linkage-to-care, people will hurt themselves) are not backed up by facts. They are beliefs that are firmly held, have not been questioned or challenged until now, and do not easily adapt to modern times where testing can be done more democratically.

This has made me a bit more aware of how we can so easily embrace an ideology that we don’t even see it. When we don’t take time to appreciate the struggle to change to meet the times, and think people should just “get over it”, we do a great disservice. But when we can stay committed to each other with deep respect as we struggle to change, we will all benefit. Whether it has to do with religious beliefs and gay rights, or self-testing for HIV, the work is the same.  

Far-ranging activities in the name of Service

This past week’s range of activities is part of why I love my job:
Saturday: Led a retreat for a local Meeting on Core Truths and Radical Hospitality. It was a day that brought together a collection of experiences and resources with the real-life challenges of seeing how difficult it is to walk the talk.
Sunday: Helped to register and disassemble 25 bicycles donated for Bikes for the World
Monday: Attended the White House Office of Faith and Neighborhood Partnerships press briefing in honor of Earth Day. The majority of people I met this day were folks from evangelical and Christian colleges, not the usual list of cohorts we liberals expect to see at events supporting our causes. But, as I have learned from the years I lived in Wheaton, IL, the commonality of being human is far greater than the differences we may have. We just have to trust it. Thanks to Jose Aguto from FCNL for including me.
Tuesday: Started with a visit to an elderly couple about 10 blocks southeast of William Penn House to assess their request for help with some home renovation and security projects that we will do with groups that come during the summer. Later, a radio interview with a Chicago news radio program about the rationale behind planning the symposiums in Illinois called “HIV Self-Testing: Opportunities, Issues and Ethics.” Pieces of the interview aired throughout that evening and the following day. I also had a phone meeting with the manufacturers of rapid HIV-tests as preparation for giving oral comments at the upcoming FDA community hearings on self-testing for HIV.
Wednesday: A supposed day-off but still ended up in the office putting up pictures of Workcamps on the hall bulletin board so people can see the range of Workcamp activities.
Thursday: Took a small group of 8th grade students from a Quaker school to do some service work for an elderly woman. Weeding, planting, cutting hedges – the little things that bring joy to this woman. As importantly, this group did in a few hours what would have taken the daughter of this woman upwards of a week to do, freeing the daughter to care for her mother and do what she does best – advocate for affordable housing in the DC community. We need to do all we can to help keep people like this out using their gifts in the world to benefit all people.
Friday: Started the morning attending a breakfast and daily reflection at a local church. The majority of attenders at this grassroots community ritual are homeless men and women. It is an inspiring example of compassion and love that flows through a warm meal and a handshake. The 8th grade students joined us. The evening was spent welcoming 12 seniors in high school from China who checked into William Penn House at about 8:30PM. These are high-achieving students on a tour of the US, and will be doing a few hours of community service with us over the weekend. This was capped off with a great conversation with a “seasoned” Friend who had been staying at WPH for a few days while attending meetings with FCNL. We compared notes on advocacy, youth leadership, spirituality, opportunities, action and service. This is a conversation that will continue.
From getting dirty with 13-year olds to greasy while taking bikes apart to being on the radio to being at a White House briefing, interspersed with planning for West Virginia and South Dakota Workcamps and dealing with other issues that arise, this is why I love the work that I do.  This list doesn't include the meetings with book authors, Tahrir Square organizers, and the countless others who come through our doors to lobby, do service, deepen their faith, or simply visit the city.  For me, all these things are connected. They are about finding one's truth while learning to listen to others. They are a part of a passion for making a difference in the world and creating opportunities for others to find they voice, while also struggling to articulate how all this is connected. Is it making a difference? I hope so.

The De-Institutionalization of HIV/AIDS

Part 1

1996 was a critical year. I had dealt with my own personal crisis of finding out in 1992 I had fairly advanced HIV (my t-cells were around 200 at initial diagnosis). I had come to grips that the "fact" that I would most likely not see my 40th birthday in 2001. I had finally gotten a full-time job working in HIV/AIDS services after spending a few years volunteering in various capacities while biding my time in more arduous social service jobs. I was going to be doing counseling at a holistic health clinic for people with HIV/AIDS. I had also been a client at this clinic. The pay was not great, but I didn’t care. I was doing something fulfilling – providing support for people who were on a fast-track to death, as I was. As a group (as people living with HIV, and as organizations committed to supporting people with HIV), we were resigned to a fate where HIV=death. Just two years before, the news about HIV-treatment was not good. Treatments were minimally effective and highly toxic. Weekly gay newspapers were full of obituaries of young men. Increasingly at this clinic, the demographic of clients also included people of color, especially black women. It was a real community of love for those of us who had only that to hold onto.

Then, the world changed. Protease Inhibitors were introduced, and I remember one of my first thoughts was “Uh, Oh”. If these new medications were as good as promised, the landscape had just dramatically shifted. I remember running support groups, and seeing people almost magically becoming healthy – in one case literally rising from his wheelchair. Andrew Sullivan, senior editor for The New Republic at that time, wrote a cover story for the New York Times Magazine called “When Plagues End”. He observed how skeptics were challenged to hold on to their skepticism in the face of such news, and how the big shift was that AIDS was no longer a death sentence, but a chronic condition (the entire article can be seen on-line at http://www.nytimes.com/1996/11/10/magazine/when-plagues-end.html?pagewanted=1). Sullivan took a beating over time from the skeptics. He was proved wrong, as AIDS remained a permanent fixture in the world. But was he really wrong? I think he was right, but he underestimated the power of the skeptics – many of whom had a career investment in him being wrong.

"Every great cause begins as a movement, becomes a business, and eventually degenerates into a racket” - Pat Buchanan, May 2008

So here we are, 2010. HIV is still vibrantly with us. We stand on the verge of another turning point. This time, the turning point is funds are drying up for treatment, and waiting lists are starting to emerge and grow. Despite advancements in treatment and testing technology, and significant advancements in communications (cell-phones, internet, texting, social networking), we continue to lose. But, despite the pleas that are heard for more money, none of this is a crisis. It is the course we have been on and as a society – a global society – we have no one to blame for this but ourselves. To be sure, “AIDS, Inc” has done little to encourage us to truly be different, or to seriously think about what should be done. From the beginning of the pandemic to the present day, we have not been encouraged to be reflective, only reactive and to obey the orders of the Institutions of AIDS. These include:
• “Spend it or lose it” policies that have resulted in keeping case loads full (this is not simply a problem is AIDS services, but of our whole sick-care approach). Since 2000, the real message should have been “Spend it and lose it, so spend wisely”.
• AIDS = poverty, women and children in Africa. This is a favorite among the evangelical world, as many can deny that HIV is primarily a sexually-transmitted disease. Thanks, Bono, for that one.
• Advocacy groups hold workshops (often made up of a mix of energized college students, people living with HIV), and immerse them in information about what to say and what to do. I even heard at one such training that people receiving HIV-services were actually told not to mention any complaints he/she might have about services. The message is never about systemic change, just money.
• Countless people talk about HIV/AIDS in countless arenas without covering and in many cases even knowing the basic (such as the four body fluids that can spread HIV).
• The Gay/HIV organizations do not speak at all to the fact that anal sex is the easiest means of sexually transmitting HIV. This is not a judgment, just a fact.
• More money, but maintain the cultural status quo.
• When it comes to HIV-testing, you have nothing to fear but you really NEED Counseling. The kicker is that the training to be a counselor is only three days, certainly not enough time if giving one an HIV+ diagnosis is so devastating.

On the surface, these all may make sense. But upon reflection, they are not going to get the job done or, more accurately, based on where we are now, they certainly haven’t gotten the job done. Given that state and national governments throughout the world are simply running out of funds (in Illinois, for example, the entire annual state budget is going to be spent by the end of the 6th month), we are once again at a turning point.

Crisis – a crucial or decisive point or situation; a turning point; a stage in a sequence of events at which the trend of all future events, esp. for better or for worse, is determined.

This time, the turning point is not the result of a new condition such as when HIV first emerged. The word “crisis” will be thrown about as if this was unforeseen, but this turning point has been long-coming, ever since “AIDS, Inc.” (this encompasses not just organizations, but the collective groupthink that pervades much of our global community) did not make the adjustments necessary after the second HIV/AIDS crisis – the introduction of protease inhibitors as effective treatment. That was a major turning point that, partnered with technology that allows for all people to self-administer an HIV-test (but remains unavailable to the general public) should have greatly altered our course. Unfortunately, despite so many accolades to people like Bush, Bono, Gates, Clinton, and the countless local, regional and global people and organizations who have played along, we have remained on the same course of chasing the virus – always remaining a few years behind.

What we need to do now is to take time to reflect while also taking action. In a very uncomfortable way, the current financial crisis may make this work easier. In his most recent book In Praise of Doubt, sociologist Peter Berger and philosopher Anton Zijderveld write that “a society’s taken-for-granted programs of action are called ‘institutions’…Individuals follow the institutional programs automatically, without having to stop and reflect” (pg. 15). Many of these institutions – public and private – are drastically reducing and eliminating programs, with more to come. But rather than fall into chaos, I would like to propose that through reflection – not lengthy reflection, but a few minutes of reflection – we can see that we have many choices at our finger tips and that, through these choices, we may actually be able to do some things more effectively. Our collective pluralist voices, rather than the singular voice of institutions, might be our saving grace.

Over the next few weeks, I will be writing some reflective pieces on what the institutional approaches have done and trained us to believe, and how we can help de-institutionalize some of the tasks and explore and create new ways of moving forward. There are no quick fixes, or easy answers. But we can do much to avoid the chaos as we come together.

Are we going to lose the fight against HIV?

It was with sadness and disappointment, but not surprise, to read the Wall Street Journal article published January 30 titled “War on AIDS Hangs in Balance as U.S. Curbs Help for Africa”. The gist of the article is this: “Seven years after the U.S. launched its widely hailed program to fight AIDS in the developing world, the battle is reaching a critical turning point. The growth in U.S. funding, which underwrites nearly half the world's AIDS relief, has slowed dramatically. At the same time, the number of people requiring treatment has skyrocketed.” The article goes on to point out that the global effort to prevent new infections has suffered some reversals due to a combination of factors such as complacency because of effective treatments, abstinence-only education, and testing that continues to suffer from the oppressive burdens of prejudice and homophobia.

As I sit and write this, it is a quiet Sunday afternoon and I am reflecting on, among other things:
• The radio program presently airing about being gay in Africa (in Namibia in particular), and how policies that outlaw homosexuality devastate HIV-prevention efforts. American Family Association radio host here in the US also thinks gays should be put in prison.
• The sermon at the National Cathedral this morning that talked about how Love, not our love, but God’s Love, is everywhere
• The Sunday forum at the Cathedral, with Congressman Tom Perriello (D-VA) talking about faith and politics. He mentioned how the financial bailout rewarded failure, and it had me thinking that when huge dollars are given to the big players in HIV/AIDS work (“AIDS, Inc”), are we not doing the same thing?
• In 2003, I pitched the idea to Senator Durbin that Illinois be the first state in the country to commit to getting all residents tested as part of the effort to get ahead of the HIV-transmission curve. He said “we can’t afford to do that”.
• This Wall Street Journal article, while certainly ringing an alarm that we all need to pay attention to, also perpetuates the misconception that “global HIV” is “Africa-only”. We are starting to see waiting lists for HIV-treatment in this country. If we cannot offer people who test positive some treatment options, we have lost a major selling point for testing. This is not an African truth, it’s a global truth that exists here as well.
• The two written comments to the WSj article include these comments: “This is a classic case of trying to fix problems in a retarded society using modern technology…AIDS isn’t the problem, it’s only one of the many symptoms…Until a people decide they want to join civilization, no amount of money will save them…” and “maybe what we are seeing is nature (gods) way of population control?”. Gotta love the compassion of ethno-centric Americans.

The nice thing about blogs vs. publications is that there is wiggle-room for venting, and that’s what the combination of the above drives me to. Are there no adults anywhere that can sit people down and say, ok, let’s be serious here: this is a deadly disease that is very treatable, preventable not curable, costly to treat, and the sooner we contain it, the cheaper the collective treatment costs will be. I’m not a public health expert, theologist, politician, financial whiz, prophet etc, but it just seems increasingly clear to me that we are a society that is trying to tinker with a system that needs a major overhaul. HIV/AIDS is both an example of this in action and an opportunity to learn what it takes to make a major overhaul. Funny thing is that this overhaul is not one of bricks and mortar, but of mindset. The image that comes to mind of our current state is this: the best mechanics in the world have been asked to work on the engine of an old car. They are all looking at the parts of the engine, talking about a new air filter, an oil change, perhaps some spark plugs. Then a kid walks by and points out to them that the car has rust, torn seats, no tires, smashed trunk, broken windows, and is basically beyond repair. By focusing on the engine, they did not see the big picture. That’s what we seem to have with HIV/AIDS work; no one in a position of authority seems to be willing to connect the dots. For example:
• The need for treatment will go up no matter what we do. Ideally, if we can quickly implement community-wide, compassionate, non-judgmental HIV-testing, the need will spike dramatically as we quickly decrease the collective “undiagnosed”, and then the needs for testing and will decrease over time. Under the current testing system, however, that tries to “cherry-pick” the most at-risk from society (basically the approach of the last 30 years), we will stay on the same course of ever-increasing needs for treatment.
• We cannot effectively stop the spread by saying everyone should be tested, and then focus on “them”.
• It is not possible to encourage the openness needed to have everyone know their status while condemning and judging the people most at-risk.

I could go on, and have for years. The point is, this WSJ article should be our wake-up call. I remember saying to a friend in Wheaton, IL, perhaps 4 years ago that the reason we were so insistent on community-wide testing in Wheaton is that’s where we were, we have to start where we are, and if we can’t do it here, is it realistic to expect places like Africa to take the lead? Most importantly, I felt then that if we do not implement a program like this locally, regionally, nationally, and internationally, we will see HIV become worse. I fear that that day has now come. We humans think we are so smart, but this simple virus has exposed a dark side of us that we need to overcome: greedy, arrogant, judgmental, afraid, and very short-sighted.

What we did on our summer journey into HIV-testing

In June, we ventured into a new area with regards to promoting HIV-testing and “KNOW YOUR STATUS”. We joined with people from Washington DC and DuPage County, IL to coordinate and support HIV-testing events, while also handing out materials about testing options (including home-based/portable HIV testing that is available on-line and not FDA-approved). Awareness that we had these tests led to, at first, admonition from the FDA to “cease and desist” with having these test. After receiving a call from FDA and talking further about our desire not to break laws but to give people testing options, while also being clear that the current system is laden with limitations, bureaucracy and wasteful spending, we found some doors opening to promote our ideas and energy flowing in the right direction. Subsequent conversations with FDA and CDC also led to a meeting at the White House Policy Office that took place on Thursday, August 13. Joining this meeting were Byron Sandford, Ex.Dir. of William Penn House, Lois Johnson, a Wheaton resident who lost her son to AIDS in 1995 and has been very passionate about stopping the spread of HIV, and Hannah Kelley, an intern at Penn House. The meeting was very exciting for us, as a grassroots group, to be at this level of conversation. The person we met with, Greg Millett, is an epidemiologist who is new to his White House position (having moved over from the CDC), and is one of only two people in the White House AIDS office (Jeffrey Crowley being the other). They are awaiting clearance of more people to work with them.
Rather than focus on just the White House meeting, I am going to summarize here all that we have learned about HIV-testing, the HIV/AIDS system of testing and treatment, and where we might go from here. Included is some information that was given “off-the-record” which to me means that, as a grassroots person, I can be affirmed in what we have suspected, and we need to exert pressure to bring about change so that fear of knowledge is no longer a deterrent to doing what we need to do.
• There is a lot of agreement from people in all these governmental offices that there is waste, there is frustration, and no one really knows how to implement the best plans. For example, the CDC has been encouraging all people to get tested for HIV, but at the state level, HIV-programs continue to ask discerning and intimidating questions that date back to the time when the only people being tested were people who had discerned a certain level of risk. Routinely, we asked “how do we eliminate these questions from the testing process?” and no one really had a good answer.
• The current HIV-tests in this country are considered a level 3 community risk, meaning a rigorous approval process by the FDA. The current issues have little to do with efficacy or toxicity of tests, but are more a question of whether our society is ready for portable/home-testing. There are also arguments that accurate data cannot be collected, but we already have that problem.
• The current, approved HIV-tests in the US may be inferior to tests that are used overseas.
• It seems like “AIDS, Inc.”’s solution is simply more money for to pay for tests and testers. This is a costly and risky proposition, especially if the current testing protocols remain.
• “HIV-testing is free and easy”, according to one activist. Testing, in fact, is not easy everywhere, nor is it always free. Consider my experience at a testing clinic in Washington: a 4-page intrusive questionnaire, and sitting in a waiting room where any semblance of anonymity is lost. In addition, pragmatically, this clinic is not a place that all people would find comfortable. Going to the MD for testing is an option, but not all MD’s are up-to-date on HIV-testing issues, and there is a cost here. Other anecdotes: in Salt Lake City, clinic hours are from noon to 4, weekdays, and cost $25 (for a $10 test), and in Elgin, IL, because of funding, one clinic is discouraging people from coming to them for testing if they are not in a high-risk group.
• Perhaps one of the biggest problems we face is this: the Obama Administration is committed to following hard facts and stats, not morality, as the guiding principle. This is great, but presents its own challenge: how do we get stats about the community ability to self-administer HIV-testing unless we roll-out self-administered HIV-testing? This seems to be the big catch-22, and perhaps one reason we need an anthropologist, sociologist and psychologist as well as epidemiologists calling the shots.
Ultimately, what I think we take away from this is that within the various departments, all people mean well, are intelligent, passionate and committed, but our biggest challenge is that we need to shift the paradigm in our society of responsibility for prevention and testing from “them” to “us”. It seems like the only way to do this is to just do it. Lengthy multi-year studies will move policies forward, but won’t shift the paradigm of responsibility; meanwhile, HIV will continue to spread.
Here are some specific next steps for us:
• Continuing to work with Bernie Branson (at CDC) on having input on an NIH-led trial to promote and increase testing among gay men.
• Apply for CLIA waivers to be approved as a testing organization (perhaps 2 – one for WPH, one for Mosaic).
• Promoting community participation in White House Office on AIDS town-hall meetings around the country in developing a national strategy to end AIDS.
• Continue to work with developers of HIV-tests to get the FDA to open the doors for “over-the-counter/portable/home HIV tests”. This will also take input from community voices.
• I will also continue to promote that people who do not necessarily want to go to through the current testing process look into buying tests on-line ($10).

After all of this, it seems increasingly clear that we really do have all that we need to stop the spread of HIV – tests, willingness to get tested, desire within the “powers that be” to change the system, etc. What we seem to be missing is that “leap of faith” moment to make it happen, or perhaps more accurately, the paralysis of bureaucracy and comfort within the status quo. In my work at William Penn House and through Mosaic Initiative, as I am able to, I will continue to promote the community change. Outside of these organizations, I will also continue to offer demonstrations and sample of the portable tests. I truly believe that all people can find out their status, and we don’t need to sit around waiting for others. We can make it such that no people ever get turned away or are discouraged from testing. I also believe that you empower by giving options, not limiting them. I’ve learned over the last few months that there are kindred spirits working in this vein in the system, but the real change may need to take place outside the system.

Portable HIV-Tests: Do we have to break the laws to change them?

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 www.mosaicinitiative.org 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 (http://www.anytestkits.com/hiv-aids-test-kit.htm). 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.

Home-based 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 www.dontguess-test.com). Join us.