Saturday, March 13, 2010

Last month, an Indianapolis man was arrested for knowingly spreading HIV. (Here's a link to the story:

No doubt, this man needs to be held responsible for his actions, but this story also raises questions for me, such as:
1. The sex with women was not coerced. To what extent are the women responsible for not taking measures to protect themselves?
2. If some of these women turn out to be HIV+, is it certain that this man gave them HIV if they have also been sexually active with other men?
3. Are we penalizing people who know they have HIV and acting irresponsibly, but letting those who do not knowingly spread HIV (meaning those who are undiagnosed) off the hook? How does this impact testing efforts?
4. If all participants were men, would the legal action be taken?

Your thoughts? You can post them here or on our website (

Wednesday, March 10, 2010

The De-Institutionalization of AIDS
Part 2:
The Lobby and Fear Game

For most of us, we have had this experience: our emotions and passions for a cause or a belief are sparked. We connect to an organization that represents, works for or advocates for that cause. In modern times, we sign on to this organization, receiving e-mails, updates and “calls to action”. Often these calls to action are for money or power. The money call is usually “give us your money so we can speak for you." The power call is usually “Meet with or call your elected official. Here’s the topic and here’s the script”. This process has been and is applied from wide-ranging groups such as the Tea Party Movement to MoveOn, and everything in between. Religious groups such as Focus on the Family have used these tactics, as have groups like Human Rights Campaign.

So what is the problem with all this? Isn’t it true that money is needed to keep services flowing and growing? No doubt money is a vital component of quality services, but this process that we currently have is too much about power and money, and not enough about accountability and truth. It is a process that allows society to "defer to experts" without being asked to think deeply about the issues and complexities - including how our own patterns of consumption and lifestyle might need to change. It is also a process that uses fear as a means to keep people from thinking deeply about the issues at-hand and considering that there might be more going on than meets the eye. It uses this fear to keep people divided, and to separate people from their money. It does not lend itself to understanding and compassion, but more to judgment and blame. Most importantly, it is a means of raising funds to keep the institutions open, but at great cost to the mission of the organization.

HIV/AIDS services have been no exception to this. In fact, I would say that “AIDS, Inc.” has become a master at this. Lobby Days (at state and federal levels) are perhaps some clear examples of this.

Lobby days generally use people with HIV to tell a story of how important the services they receive are. Keep in mind that it was during some of these lobby days, when DC residents were included, that there was a simultaneous misuse of funds happening in DC that was reported on just last fall. These “lobby days” are pretty formulaic; people with HIV/AIDS (called “consumers”) tell their stories, and then the lobbyist gets into the details of a legislation/funding issue.

Here is what does not happen at Lobby Days:
“Consumers” are coached to not bring up anything negative about the services they receive. These days are all about money, not accountability. So the question is: where does the accountability come in? I attended some of these lobby days in DC between 2003-2005 (all costs covered – again more money). These were some of the years of incredible fraud and even theft taking place in Washington DC AIDS services.

“Consumers” are not at all encouraged to consider how we are living our daily lives during these days when we are pleading for funds to underwrite our living expenses (I am using “we” in the broad sense of “consumers” as people with HIV/AIDS). Yet, at these lobby days, I am amazed at the amount of smoking and drinking that takes place among consumers. For two years, my regional team leader could not wait to get back outside to have another smoke. I’m not saying people need to live pure and chaste lives; I am saying that the organizers and leaders of these events - basically representatives of “AIDS, Inc.” – could say at least a few words about how, as we ask for funds to help us meet our living needs, we at least make an effort to live healthier, doing our part to ease the burden. One year, I brought two young men from Wheaton College with me to experience this event in DC. They were both young heterosexual men from Evangelical Christian communities. They were in a clear minority at this lobbying event. They were exceptional in their messages. They were also “hit on” by consumers. One was invited to a sex party. To their credit, both of these young men reflected on what was going on.

It is this kind of reflection that “AIDS, Inc” (or any institutionalized movement, for that matter) finds threatening and would prefer not take place. Generally, the pattern is to take enthusiastic and well-meaning college students, show them just enough of the current problem to get them aligned with what the organization wants, but not enough for them to see that the issues might be more complex or the action options might be more numerous and even less money-dependent. Ideally, bringing “consumers” into the picture helps to complement the experience, but again, consumers are ideal if they often fit the image. Then everyone traipses to state capitals or to DC and tells a story or demands action. This is often supplemented with signature campaigns. All very good, and important, but not necessarily helping society become more informed, more responsible, or more effective in stopping the spread of HIV.

Instead we have many "experts" who can talk about some of the funding and legislative issues related to HIV/AIDS, but not many of them could tell you what the four body fluids that transmit HIV, nor have actually been tested for HIV, so they really have no real-life experience of how the current system works. This lack of knowledge fuels the very stigma and blind-spots that we need to overcome. The most blatant personal example I have of this was when one college student told me that I just don't understand the AIDS pandemic because she had been trained by Student Global AIDS Campaign and the One Campaign, and had been to Zambia. It becomes an "exclusive" rather than an inclusive narrative.

There have been times that I have been the only person with HIV around the table, but told flat-out that a lobby meeting needs to have an activist who has HIV but I don’t qualify because I am not the right gender or color. This is the way it goes – it is a very narrow narrative that is allowed to be told. “AIDS, Inc.” cannot afford for a complex narrative to emerge and have people stay on message.

While all this may sound harsh and heartless, I think it is actually the opposite. This is really about compassion for those in need, encouraging those who can do for themselves to do so, and to do what we can together to decrease the need. A good friend of mine, someone who was near-death in 1995, but got well and returned to work. He has a heart of gold, and has dedicated his life to serving others. He was one of the first residents where I worked who grabbed life by the horns and said “people, it’s time to move on if we are able”, used a term for these lobby days. He said these big organizations bring clients from around the country, coach them to tell their “poor me” story (he actually said “poor, pathetic AIDS story”) so that more money can be garnered. This is a template that has been proven effective all around the world, but is susceptible to misuse and abuse, as we have seen, not just in corruption but in tying in policies such as “Abstinence-only” that really do not advance the collective missions.

How do we break this cycle? The efforts of The Mosaic Initiative have been to continue to show up and speak up as best we can. Most recently, for example, we attended a workshop in Washington DC that brought college students and “consumers” together for what was supposed to be an advocacy training and networking weekend but was instead a “throat-cramming” of more dollars for treatment in Africa. We were the constant voice to raise awareness to HIV-testing as vital to stopping the spread of HIV, and to the fact that the current system is wasteful in limiting testing options. There were those who were interested in learning more. So sometimes the best we can do is to stay informed and stubbornly show up at places where people are being indoctrinated in the “money/power” paradigm, and plant seeds for deeper thinking.

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Friday, March 05, 2010

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 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 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.

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Wednesday, February 17, 2010

Enough with the Urgent Demands to Maintain the Status Quo

Over the past week, AIDS organizations and workers around the world have been experiencing wake-up calls. Out of Uganda was the article in The Wall Street Journal that the rate of people getting tested is slowing down because treatment programs are less available and, without that incentive, what’s the point of getting tested? In Washington DC, GOP House members are calling for a more thorough vetting of federal dollars spent on AIDS programs in the District in light of the report in the Washington Post last fall about waste and corruption. No doubt, these House members are looking to score political points, and shame on Democrats for not also calling for greater program accountability thus allowing this to degrade into another partisan issue. The predictable reaction among AIDS advocates in DC has been silence or added layers of blame and denial, stating that the corruption occurred under the Bush Administration (forgetting the fact that the Bush Administration did not commit the corrupt acts, at least in this case). Then, this morning I received an e-mail from the AIDS Foundation of Chicago about the Illinois fiscal crisis. The writer of the e-mail stated that this is “the most serious state fiscal crisis (he has) seen in … 12 years”. You would think that all of these, clearly illustrating that the challenges are not restricted to any one area, would lead to urgent calls for community action. They are all indications that we are on a slippery slope to losing many of the gains that had been made in the fight against AIDS, and perhaps it is time to shake everything up so we can get back on a positive trajectory. But no. Instead, the calls to action are to sign petitions and lobby to get more dollars back into the same system.

Personally, I cannot get excited about any of this. Waste and corruption has been rampant in AIDS work for well-over a decade pretty much throughout the world as organizations have stubbornly refused to commit to getting ahead of the HIV-curve. For almost a decade now, I have been convinced that a vital piece to stopping the spread of HIV is that everyone – E-V-E-R-Y-O-N-E – knows his/her status through testing. The constant message I have said is that testing includes education and compassion, and that this is a community responsibility, not a government-funded program. Routinely, people have responded by twisting and contorting almost everything in order to keep HIV-testing and education the purview of “AIDS Inc.”, with comments like people can’t be trusted to do this right, or people will find out they are positive and then kill themselves. Data does not support this, but the very same people that demand factual, proven-effective education create myths about testing with no facts to back them up and no desire to test the theories.

I have seen the waste first-hand. I have not seen, perhaps, the blatant corruption of stealing and pilfering as has been reported in places such as Washington, DC, but I was not surprised by it, either. I have seen the corruption of greed and the waste of unnecessary expenditures, “needs assessments” and other kinds of delay-tactics that take time and money but by the time they lead to action, we are even further behind the curve. Some examples:
• Executive Directors blithely saying they only come to “partnership” meetings because they get money from the partnership and not being challenged to really collaborate.
• I have been recruited to be a participant in HIV-education presentations in order to meet a monthly funding quota, not because I needed the education.
• In the mid-1990’s, I was kept as an active caseload while not receiving any services, effectively being a statistic for funding.
• When I ran an AIDS Housing organization, the greatest pressure was to keep the apartments full regardless of whether the prospective resident was appropriate for that kind of housing. I resisted often. During this same time, many residents received travel vouchers to get cab rides for MD appointments at over $100 roundtrip. Public transportation could do it for under $15. Clients were given this independent of any physical-needs consideration; it was simply because the funds were available.
• One year in Kenya, I was told by a British worker that the US dollars are plentiful, but not very effective if spending must be done by the guidelines (Abstinence-only education), as they do not meet the community’s reality.
• I co-chaired a housing needs assessment in Chicago from 2000 to 2002. Despite my concerns about the waste of time and money put into the process (including bringing in out-of-state consultants), the project went on. The report provided no new information. The ultimate was this: the overwhelming majority of people with HIV/AIDS did not want AIDS-segregated housing. This was ignored because an AIDS housing organization had already made plans to build one. The ground had not been broken yet, but they proceeded anyway.
• As funding started to decrease, already-funded programs were forced to collaborate more. Prospective applications for grants are now often restricted to previously-funded programs, thereby decreasing the opportunities for truly innovative new ideas to emerge.
• Most recently, I have been participating on a committee to develop community-wide test and treat programs (under the purview of NIH and CDC). It is an expensive proposition that does not alter the current system at all, relying on even more funds in the future to be successful.

Throughout much of the 1990’s and into the new century, the mantra was “spend it or lose it”. I remember thinking to myself that the day will come when it will be “spend it AND lose it”. I always felt strongly that it is better to spend wisely and return funds if necessary rather than foster dependency on an impermanent system. It seems like that day has finally come. Sadly, what seems inevitable is that people all over the world – including in Illinois – with HIV are going to increasingly not be able to access funded treatment programs, HIV-prevention programs are going to be reaching less people, and HIV-testing will be increasingly limited to the highest-risk groups, always the most difficult to cherry-pick out of the fabric of society.

Instead of any innovative calls for community action, we are left with the same players putting out calls for people to advocate for the government to come up with more funds for these very same systems that, when the money was flowing, had no qualms about spending wildly and often unnecessarily. From city halls, to state capitals, to Washington, DC, people are converging (at no cheap cost) to learn how to lobby for dollars for the status-quo system both here in the US and in Africa, and they will be lobbying to systems that are flat broke and not going to be sympathetic.

If our AIDS leaders can come up with nothing better than “we need more dollars”, I say “enough”. It's been over two decades since AIDS, Inc. has come up with anything new or innovative, despite the fact that technological development now offers effective treatments, and we have the capacity to self-administer HIV-screening with results in 5 minutes. It’s been 8 years since I met with Senator Durbin and asked him to help us lead a campaign to have every resident in Illinois know his/her status. His response: “We can’t afford to do that”. I said at the time, "we can't afford not to do it", and every day, the cost goes up. Since then, I’ve kept to the same message – a message that the CDC now says is vital to stopping the spread of HIV. I know people get tired of hearing it but, just as over the past week many of us got tired of shoveling snow, the task remains, and won’t go away simply because we are tired of it or hearing about it. It will only go away when we take action. It is a simple fact – when we all know our status, our collective education as a society will rise dramatically, and as individuals armed with this education, we can be effective agents for taking this forward. The technology exists that we could do this on the cheap. We just need to change the policies around disbursement of self-administered HIV-screening and stop scaring people with the belief that they need "AIDS, Inc." to survive, and we can start moving.

So, until these urgent calls for action and demands for more funds start to include a strong message for community action to get everyone to know his or her status, and include as a part of their gatherings opportunities for people to learn how to administer and talk to people about these tests, I’m out. Enough chasing the virus. Too much money has been wasted, and too much time has passed. It’s time for the current system to collapse, and let something else emerge.

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Sunday, January 31, 2010

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 that has me 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 treatment and testing will decrease. 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 need for treatments.
• 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.

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Wednesday, November 18, 2009

I attended a part of an FDA Blood Control conference yesterday, and was one of 7 people to have 3 minutes to present my opinions on whether FDA should approve over-the-counter (otc) rapid, self-administered HIV tests. In partnership with RJ Hadley in Chicago and Christine Harris in Austin, TX, we had submitted a written statement the week before.

Here’s how things went yesterday: I arrived at 11:30 with Amanda Haase, a William Penn House intern. We went to the lunch that was hosted by OraSure. At the table, we had some great conversations about how entrenched “AIDS, Inc.” is, and how it is only money that is asked for. We shared the same passions that bureaucracy and institutionalization of services is as much if not more of a problem than the lack of funding. Amen to all that. It’s always nice and affirming to connect with someone that shares sentiments, especially someone in her position. We will certainly continue this dialog.

Then it was on to the committee hearing about the approval of otc tests. The first part of the afternoon was 20-30 minute presentations on the science/technology of rapid tests, and the hoops that have been jumped through so far. While all of these people are clearly smart and dedicated people, what I noticed was how, as is so often the case, they seem to have developed a myopic approach to stopping the spread of HIV that is reliant on the status quo, institutionally. It was the same song and dance about high-risk groups (labels, labels, labels), and a limited appreciation of how otc tests could fundamentally change the landscape. One guy even presented detailed stats and graphs of a model – not even real numbers. I think we would all get more for our money if he were paid to study something that is happening, rather than what could happen.

They were looking at the challenge of marketing and packaging otc tests so that people the highest risk individuals could buy them and use them properly, but never mentioned the power of facebook and youtube to play a role in this, let alone that there are many of us out here who in no way will mark the shift in the landscape of HIV-testing by just letting them sit on the shelves. One epidemiologist, in particular, who kept insisting that “hard science” is needed to prove that these tests can be used effectively before approval can be given, but seemed to be relying on physical science, not social science which is needed here. He even made an analogy between these rapid tests and the development of a vaccine as holding out false hopes, even though these are two very clearly different beasts. Again, the myopia of one’s profession interfering with the big picture.

One option they are considering is buying these tests with a pharmaceutical consultation. It’s a step in the right direction, but I don’t think it will make much of a difference. There was also a healthy discussion of concerns over false-negatives and false-positives. Clearly the latter is more anxiety-producing. Their concern was that false negatives were terrible because of the erroneous security. One panelist, however, felt that in the entirety of all people getting tested, false positives among a few are better than not getting tested at all. I agree with this, especially if there is solid education about all of this that includes that false positives are a distinct possibility, so the person taking the test is more educated regardless of the results.

During the open comment time, every single speaker read statements supporting otc approval. They cited that rapid tests have helped dramatically improve test access, and otc could improve that. Some talked anecdotally; some talked with numbers. One presenter, a rep from a test manufacturer, showed stats from Europe that clearly indicate this can be done well.

As I got ready to speak, I decided to trash what I had prepared, as it was all being said by others, and went from the heart. I talked about how these tests in and of themselves won’t make a difference – that there are entire armies of us that will be the vehicles of change. I mentioned that I have sat around similar tables as they are, and seen great energy and intelligence wasted while ultimately maintaining the status quo. I observed that we are all pieces of a puzzle, and that community efforts are a piece of this puzzle (including the social networking) that they are missing but I know stands ready. I said that it has been over a decade since there has been any big shift in the HIV/AIDS landscape, and that approval of otc tests could be just the ticket. I also held up a sample of the tests we have bought, and said that I already know that these are being used by people who don’t feel comfortable or need the present testing system, and it makes a difference. I challenged the committee to see for themselves what the present HIV-testing experience is like. Go to an MD in Kansas; go to a clinic in Elgin, IL, Salt Lake City, or Washington DC, and do it without fanfare. Experience first-hand the questions, the time limitations, and the costs, and then come back and consider the issue of this option.

We’ll see how far they go with this and how quickly, but without a doubt, the public support and willingness is there. Interestingly, that afternoon, I received an e-mail of a study out of Johns Hopkins that self-administered testing is safe, effective and desired, so now the stats are coming out to.

I think it is really going to take a rise-up in activism akin to what ACT-UP did in the 80’s and 90’s to get medications and research going. There were some on the committee who did react to and seemed to be moved by the passion of the public comments. We need to increase the volume of this ten-fold, a hundred-fold, a thousand-fold. It will make a difference.

On a related note, I also saw that POZ magazine has an article about how youth are not talking enough about HIV. As I observed from this FDA meeting, I don’t think it’s that they are not talking enough; it’s that we have not adapted our communications and our relationships enough to keep the issue present. Heck, we are barely doing it among our peers. As always, it is easier to blame the youth rather than ask what we can do about it. I much prefer to be open to what I can do.

Tuesday, November 10, 2009

Here's a copy of the comments that Christine Harris (in Austin, TX), Rob Hadley (Chicago) and I have submitted to the FDA regarding approval of over-the-counter sale of tests.

We, the undersigned, are submitting these comments to the FDA supporting the approval of over-the-counter rapid HIV-tests. We are people living with HIV/AIDS. We have been active and vocal about HIV/AIDS issues as a whole and have observed the unfolding of the community conversations about the prospect of over-the-counter HIV-testing. What we have noticed is that the driving question has been “Is this a good or a bad thing?” when the question really should be “In what ways can the availability of over-the-counter HIV-tests help us in our collective desire to stop the spread of HIV?” This opens doors to look at the possibilities – many of which are actionable. Here are some thoughts we have:

· The current HIV-testing system is very cost-ineffective (with administrative over-head among other costs). We can also attest to the limitations of the current system – it is often intimidating, humiliating and embarrassing, not always compassionate, and not always free. This includes HIV-testing clinics, health departments and medical providers.

· The current strategy of targeting “high-risk” groups and bringing them into the current testing system only adds to the stigma that we are striving to overcome. All persons sexually active are at risk.

· The concerns about linkage to care can be addressed when people such as ourselves are able to sit with or speak with co-workers, family, and friends to self-administer tests. We know first-hand the importance of care, as well as the limitations of care and the need to assert ourselves. OTC tests can be a means to help us educate others while promoting testing.

· OTC tests are ideal for repeat testers and for people without HIV who are in relationships with people with HIV. The presence of these tests in places where people are highly sexually active and are ignoring the bowl of condoms in the room. The mere presence of these tests may get people to stop and think.

· Women in either healthy or domestically abusive/violent relationships will be more empowered and able to take control of their own health much safer and quicker with the availability and approval of OTC HIV home tests. Placed next to the “at home pregnancy test”, more women would be alerted to the message anyone can become HIV+.

· For many people, the stigma of getting tested can be very intimidating resulting in not testing at all. Many of these people, if they knew they were positive, they would go for treatment and counseling. We know many people who have stated this including ourselves had the option been available.

· There is a concern that people who self-administer HIV-tests and find out they have HIV will harm them selves. Clinically, there is no data to support this. Besides, the FDA routinely approves medications that have harmful, even deadly side effects, and issues warnings about this. Similar warnings can be added to OTC tests including 24-hour hot lines and live peer support lines.

· In the past 2 years, we have seen first-hand many individuals, members of congregations including entire congregations be turned away from testing because they are not in the “high-risk” groups. Many of these people live in communities where asking for an HIV-test from a medical provider carries social and professional consequences as well and is more costly and time consuming for the consumer. Many of these people would be willing to pay $10-12 for an OTC test.

· The ability to test oneself can be extremely empowering.

· The presence and availability of OTC HIV-tests in stores will help market the message that we all can get tested for HIV.

Approval of OTC HIV-tests will not solve the problems we face, but such approval will provide a new option for people. It will provide a new way for those of us who are passionate and committed to stopping the spread of HIV to reach out. To be sure, vigilance about compassion, linkage to care, and factual education is required. We view these tests as a means to accomplishing all of this.

Christine Harris, Woman to Woman Advocate

Austin, TX

RJ Hadley, Community Organizer, Activist

Chicago, IL

Brad Ogilvie, Program Coordinator, HIV-testing advocate

William Penn House, Washington, DC

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