Mosaic Initiative

2010-03-13T09:28:00.000-08:00

Last month, an Indianapolis man was arrested for knowingly spreading HIV. (Here's a link to the story: http://www.theindychannel.com/news/22636564/detail.html)

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 (http://www.mosaicinitiative.org/index.php?q=node/18)

2010-03-10T08:01:00.000-08:00

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.

2010-03-05T08:28:00.000-08:00

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 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.

2010-02-17T11:51:00.000-08:00

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.

2010-01-31T15:54:00.000-08:00

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.

2009-11-18T09:03:00.000-08:00

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.

2009-11-10T06:47:00.000-08:00

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

2009-11-02T08:27:00.000-08:00

OTC rapid HIV-tests: a monumental shift.

What happens when you ask a group of people to imagine that they are charged with the task of promoting a community-wide plan to get everyone tested for HIV? This is an experiment that we have been doing over the past few months, and it has been enlightening for me, as well as educational for the participants as questions about open up for conversations about the current system. Inevitably, issues of mandated vs. voluntary testing come up, and it is readily agreed that voluntary testing is the best way to go. But we can effectively promote a culture that makes HIV-testing the norm rather than the exception through marketing, and making access to testing as easy as possible. Issues about reporting and linkage to care also come up, but these are already issues in the current system, and issues that the current system has not been able to overcome.

Given that over-the-counter (OTC) rapid HIV-tests could become a reality in the near future, I have asked groups to consider ideas for promoting "KNOW YOUR STATUS". Here is a list of what two classes at Wilmington (OH) College came up with recently:

Do HIV-testing in 7th grade
Institute guidelines that offer HIV-testing upon high school graduation or earning a GED
Routine testing at medical appointments
Encourage HIV-testing when getting drivers licenses/state ID's, or registering a motor vehicle
Include information about HIV-testing on cigarette and alcohol packaging
Include HIV-testing as part of a marriage license
For employers, ask/encourage new hires to get tested, but not tying in results of the test to employment. A precedent for this is at a tea company in Kenya that offered testing and counseling, and insured that the employer did not know the employee's status. The result was a decrease in absenteeism.
Offer a tax-deduction for those who got tested (or purchased a test, at least)

Each one of these, in and of themselves, can raise concerns when they move towards "mandated" vs. voluntary, and it is a healthy discussion. The point is that there are many things we can do.

Compare this with what "experts" tend to come up with: expanding HIV-testing to ER/hospital admissions, and paying people with HIV to get into care. The blind spot here is that they are looking at ways to get people to where they are (looking from the inside out), whereas The Mosaic Initiative and William Penn House, through this work, are encouraging and nurturing an approach that remains outside the system. The hopefully-impending approval of OTC rapid tests can move this effort far further far faster than we could have imagined even 6 months ago.

How do you think you can use OTC rapid tests to complement the current system to move us towards the goal of getting all people to know their status?

2009-10-08T12:14:00.000-07:00

Imagine if there were no HIV-testing programs. HIV/AIDS was just as it is now as far as statistics, and the technology for testing and providing treatments for HIV were as they are now. The only thing different is the stigma. And then imagine some of the brightest minds coming together with the following task: Develop an action plan to get everyone to know his or her status as the first step to containing the virus, and insure that all people who are positive have access to treatment. Figure out all the ways we can get HIV-testing to people, giving them full-options to testing. Include using the power of social networking (blogs, youtube, facebook/myspace, etc) to reach as many people as possible. Engage college health centers, churches, public and private schools. Do whatever it takes to get everyone to know his/her status, and we can go from there.

This, in a nutshell, is the challenge we face. Rather than a community-based approach to stopping the spread of HIV, we have an institutional-based approach, and it is an institutional model that, despite pledges otherwise, are very much driven by the "high-risk/stigmatized" approach that stubbornly refuses to take a broad-vision approach to HIV-testing.

I have recently joined a panel (called together by the National Institutes of Health) to develop a new "TNT" (Test and Treat) protocol for two urban areas. As with so much of what I have seen, it is a very passionate and intelligent group of people (we have not actually met face-to-face - that will happen next week). They have wisdom and experience in HIV-work. One of the charges is to expand testing. What I struggle with is this: they seem to have a huge blindspot about HIV-testing that limit the possibilities. The only vision they have about testing is how to get people into their systems. The only expansion of testing that they are talking about is including HIV-testing in hospital emergency rooms. Can you imagine going into an ER with a broken knee and somehow being expected to process with informed consent that you will be tested for HIV? Given that one of the main objections to community-wide testing is the concern for counseling, I can't imagine an ER being the kind of situation where people coming in for one condition being confronted with an HIV-test fits. One of the basics of counseling is to meet the client where he/she is at. HIV-testing in ER's for all people hardly fits, unless it is truly part of a "we are all doing it" approach.

The current HIV-testing system has its roots in a time when only people deemed at-risk were tested, the stigma was worse than now, the testing process called for a blood draw that was sent to a lab, and there were really no viable treatments available. Pretty much all of this has changed, but the institutional rigidity remains. Perhaps it is really time to call for a dismantling of the current testing system, start from scratch in a way that cheaply and efficiently makes testing available for all people, and put most of the resources into treatment. That would be my suggestion.

2009-09-03T18:24:00.000-07:00

PIGS at the TROUGH!

I just got back from a presentation at the DC Department of Health's AIDS Administration. Let me start by saying that all the people in the room were caring people who have their hearts in the right place, so this is not about them as individuals. This is, however, an absolute slamming of "AIDS, Inc." - an institution that has completely taken over and has no intention of going away.

Here's why: The presenters gave a lot of data about the sexual behavior of "msm" (men who have sex with men). What the data showed is that msm still make up the highest number of people contracting HIV and that sex and drugs impact behavior. There were lots of slides with numbers, statistics and terms - including one item that showed that 64% of respondents knew the HIV-status of their last sexual partner. The problem with this last issue - which I raised - was whether this information was reliable. The presenters said that it was a good thing that these people think it is, but I would actually say that it may not be good - it could be reinforcing the false sense of security that you could just tell if someone has HIV based on their word and how they look.

There were many other issues I had with the presentation (including the usual - what does any of this tell us that changes what we know? how does this help get people to get tested? How does this change the stigma? etc.). The fact is that this study only reinforces the stigma of HIV as a gay man's disease. But the real kicker is this: these presenters referred to this study as their "baby", that it's only three years old, and that they will be replicating it to two other high risk groups over the next 6 years (3 years each group), and then repeat as they fine-tune their data collection. Meanwhile, there were giggles and chuckles as they talked about the limitations of their work, how they defined msm, and how good they all feel about the data.

ARE YOU KIDDING ME?! We are talking about lives here. Where is the talk about stopping the spread of HIV NOW! Where is the concern that this is not a gay disease, a black disease, a women's disease, but a public health issue?

I did raise the question, with passion. It was heard, and I think registered. I also wonder, however, where is the community outrage?! These people are talking about multi-year studies that tell us what we already know (really, it seemed like what they were studying was a new methodology of epidemiological data collection rather than collection of useful data).

There was some talk about the high levels of support from among people ages 18-34 to make HIV-testing routine in doctor's offices. Two things about this (I mentioned both of these): this is the age group least likely to have a routine around medical care so it's less of a reality, and this is a group that is most amenable to testing, so let's get the tests to them. I made this impassioned plea: the community is ready to take action, to self-administer and make HIV-testing more portable. We either need people like these epidemiologists to help us make the case statistically, or to get out of the way so we can do it.

What is clear, based on all the meetings and conversations now at the highest levels of HIV-administration at both municipal/state (here in DC, sort of the same thing) and federal levels, is this: all people mean well and want well, but the bureaucrats are limited in their power, and the epidemiologists are calling the shots. Unfortunately the shots they are calling are for more studies. We know enough. We need the psychologists, social scientists, sociologists, theologians and artists to now step up and create more options. And, most importantly, the community voice and passion must be raised. This is the only way that change will really happen in any timely matter.

2009-08-17T10:17:00.000-07:00

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.

2009-06-29T07:25:00.000-07:00

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.

2009-06-19T13:59:00.000-07:00

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

2009-06-03T14:08:00.000-07:00

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.

2009-05-29T09:05:00.000-07:00

EMPOWERED

So often in social services and in community work, we hear the word "empower" (as in, "my job is to empower my clients..."). People become empowered when they are given choices, and allowed to make those choices. But when it comes to HIV-testing, this concept is elusive. The technology exists for people to find out in the privacy of their own home their HIV-status (at least through a screening), and in other parts of the world, people are able to acquire these tests easily. But here in the US, the purchase of these tests over the counter is illegal. Lacking FDA approval is the stated reason - which is true - but what are the reasons these tests are not available? Without going into a lengthy diatribe about this, the essential reason seems to be that people are concerned that our society is not ready for people to screen themselves in the privacy of their own home.

I (Brad) recently purchased an HIV-screening kit on-line. With co-workers in Washington, we screened ourselves. For the first time in the 17 years that I have known I have HIV, I visually confirmed for myself that, yest, I do have HIV. It was a subtle shift in my perception. It can also be an empowering experience to further turn around and offer this screening to others.

As we gear up for National HIV-Testing Day, getting government approval to expand the testing/screening options for people is one of our major goals. We cannot effectively stop the spread of HIV until all people know their status. We cannot effectively empower people to do this by limiting their options, but rather by expanding their options.

2009-04-24T13:33:00.000-07:00

I just found out yesterday about a company that sells home-based HIV-screening kits where the test is self-administered and the results are given in a similar way to home-pregnancy tests. (Information about these tests are available at: http://www.anytestkits.com/hiv-aids-test-kit.htm). Here's the thing: this company is a South African company. The tests can be shipped to the US (no additional costs), so they are discreetly available here in the US.

The fact is this: In many countries - ranging from sub-Saharan Africa to western Europe - it is possible to buy home-based, self-administered HIV-screenings, but here in the US, it is not easy to buy these things. Here at home, the message is that people need counseling to go with testing. While I certainly understand that there is a need for supports and for information about available services for those who get a positive on the screenings. My question is: why do we need these extra things more in the US than in other parts of the world. There is a cynical part of me that says this is just part of the institutional turf of HIV/AIDS services, and the more that people are told that getting an HIV+ result is traumatic, the more it becomes a reality.

Ultimately, if we are to be serious about stopping the spread of HIV and we want to have all people know their status, we need to provide a range of opportunities for people to do so. We have many pieces in place to reach out to the high-risk, but we also need to provide unobtrusive options to the lower-risk. To assume that all people need to go through a system like what we have now to get tested (either a public health clinic or a medical provider - both of whom can be intrusive and sometimes threatening despite best intentions) is erroneous.

2009-04-14T10:44:00.000-07:00

The Mosaic Initiative has continued to support the community development work in rural Kenya. In addition to helping with the development of the Buchifi Community Center so that it can be a fully-functional facility (currently, it is providing lunches to local school children 3 times a week), we recently sent some funds to help pay for the rent of an orphan tailoring school in Mumias. We have had a long history with Joel, a young man who lost his parents to AIDS in the 1990s, and he has had to do what he can to take care of his siblings - including a brother who is deaf. His is a story of struggle and survival - always trying to make do.

It is a constant struggle to be of assistance as best we can. We know that we don't want to do for others what they can do for themselves. At the same time, we can make such a difference with so little. Joel's rent is about $60/month for a two room facility. I'm sure many of us, just by cutting back on Starbucks, could cover this. And we are always willing to risk supporting an organization that is trying to help others, such as Joel is doing.

2009-03-25T10:49:00.000-07:00

What is it about HIV-testing that scares people so much? It's an on-going challenge that is fueled by stigma and fear. Over the past few years, the work of The Mosaic Initiative (www.mosaicinitiative.org) has been to promote HIV-testing as an essential ingredient to stopping the spread of HIV. We cannot effectively get ahead of the HIV-curve if we keep following where the virus has been, and the fact is that HIV-testing is really the only way to know where the virus is from a public health perspective.

But, when you talk with people about HIV, and the needs that exist to respond to the pandemic, you hear about the treatment needs, poverty, needle-exchange, sometimes education, and other things - but all with an eye on the "other" or "them". This "other" group can be in our own backyard, or in far-away places. Rarely do you hear, when at the end of the saga of HIV, the speaker turn to the audience and say "ok, here's where I want you to start - get tested". But that's really all that The Mosaic Initiative is focusing on right now. We have come to see that the resistance to getting tested is so real and pervasive that it absolutely must be overcome if we are to slow the spread of HIV. It is the ultimate in changing the stigma of action from something "they" must do to being something we all can do. The fact is that we cannot really know and develop an action plan around HIV unless we have a real good sense of who has it, and who needs education.

So, when you have the opportunity, please do this, and encourage others to do the same. If you are in the Wheaton, IL area, join St. Paul Lutheran Church on June 5 for HIV-testing. Or go to your health department or medical provider. Going to your provider may be best. It's the opportunity to really break down the stigma while also testing your own doctor's awareness of the 2006 CDC guidelines that all people get tested.

2007-04-24T08:08:00.000-07:00

On Saturday, April 14, I attended a workshop at the Downers Grove Friends (Quaker) Meeting about the history and applications of the Quaker Peace Testimony which is, as much as any oath is possible among Quakers, the one oath or vow that is taken. The most important message that I took from this day was that the true essence of the Peace Testimony is not the stand against war and violence, but the commitment to rooting out the seeds of violence (usually the -isms of society - classism, racism, sexism, etc. - those little things that then become struggles for power and control, as well as what allows us to turn our heads away from poverty and disease).

The following day, I heard on the radio a man from Harvard University talking about a program he developed called The Third Side (see www.thirdside.org). The concept of the third side is that it is "a way of looking at the conflicts around us not just from one side or the other, but from the larger perspective of the surrounding community".

This double-whammy message struck me that this is exactly what The Mosaic Initiative has been trying to accomplish since inception and, for me and Cathy personally, since well before that. In the HIV/AIDS world, there have long been two sides - pretty much along the liberal/conservative fault lines, at first those who were touched by HIV/AIDS, and those who stated AIDS was moral judgment for immoral behavior, and more recently, along local and international lines, but culturally, still looking pretty much the same on each side. But, there are actually many "Third Side" organizations that have emerged in the HIV/AIDS arena over the past 5 years (such as Student Global AIDS Campaign and The One Campaign). One of the challenges has been that while these organizations have in spirit been "third-siders", their actions have been primarily on one side (focused beyond US borders, primarily Africa and Asia).

We will continue our commitment to engage these oganizations locally, most importantly by promoting testing for everyone. In this global community, what happens overseas will impact on us, and conversely, what we do (or don't do) at home impacts the world. Our continued struggles to connect local and global - that all communities need education and testing, for example - will be where we focus our energies. With over 11,000 estimated people in Illinois living with HIV who are undiagnosed, and with the myths/misinformation out there, we believe the integration of some simple things (testing, knowing the four body fluids that transmit HIV) will make a huge difference.

2007-03-23T11:09:00.000-07:00

There are 11,000 people living with HIV in Illlinois who don't know it. These are the latest estimates released by the Illinois Department of Public Health in early March, 2007. The AIDS Foundation of Chicago spread the message through it's listserve and then promptly called for all people to get tested, imploring all citizens of the Chicago/suburb area to join together and stomp out the spread of this preventable, costly and deadly virus. Actually, no, in announcing these numbers, they instead implored on all people to call on legislators to give more money to organizations.

Why the cynicism? Because I fear we are at a serious crossroads, and after two months of seeing divided services, apathetic responses, denial that testing matters, and yet heartfelt statements that people really do want to make a difference (while continuing to not do the one thing we all can do), I am more convinced that our institutional approaches are as much a part of the problem as they are in providing the solution, if not more so. In addition to these professional experiences, I have had a couple of personal blows (currently being uninsured, although that will change), and perilous financial situation that was triggered as much by my former employer not paying off a $100 visa bill from when I worked there, and this account going into 90 day late cycle adversely affecting all of my interest rates to the point that I can no longer keep up (and all this by a corporation that has made not one but THREE commmitments to people with AIDS apparently as long as they can keep them at arms length). So I find myself being increasingly skeptical that the institutional approach to slicing and dicing the population beyond recognition and beneath humanity is going to accopmplish much of anything.

I recently asked the coordinator of the clinic in one of our neighboring towns how that clinic is implementing the new CDC guidelines that are encouraging MD's to offer HIV tests to all people. The reply: "We first identify who we thingk needs to be tested, and then we refer them to our partner clinic (about 15 miles away). What part of this suggests that all patients are being encouraged to be tested? And, with transportation challenges, and the fact that testing requires two visits, how feasible is this?

This is a mild example of the institutional approach. And the thing is, this May is the one year anniversary of the CDC announcing its intention to shift focus for testing. But many local and regional HIV-testing organizations are awaiting further instruction on how to implement this (what part of "all people" is so hard to understand?).

So here's my proposal: all people go get tested. Let's rally the troops and make a regional and statewide commitment to get everyone tested, including ourselves. For each person who is living with HIV who is undiagnosed, there are countless more at-risk every day. And yet, every day presents an opportunity to shift direction. And with each test, we move closer to the truth while having an opportunity to educate about HIV, about compassion, and about making a difference. The worst feeling we could have is to see HIV rise in Illinois from 40,000 to 60,000 and beyond (especially since the funds for treatment are decreasing). We've been down that road before; it's not pretty, and the toll on finances and human lives is too costly.

2007-03-12T08:51:00.000-07:00

Last week, I was at the DuPage County Board's Health and Human Service Committee to try and accomplish three things: 1. Introduce The Mosaic Initiative, hopefully as a community partner to help fill gaps created by on-going funding issues; 2. Ask the County Board to get and HIV test and promote county-wide testing; and 3. Support us in promoting "KNOW YOUR STATUS" on print and internet dating service companies.

While initially to response seemed luke-warmly positive, one question that seemed to be lingering was: since DuPage County has such a low disagnosis rate (average of 30 per year), how much effort should the health department put into this effort? (See: http://www.suburbanchicagonews.com/napervillesun/news/285723,6_1_NA07_HIV_S1.article

A couple of thoughts about this:

With an undiagnosed rate of between 30 and 50%, we know that there are more people out there. In Illinois, it is estimated that thereare 10,000 people undiagnosed. Each one has the potential to easily give the virus to someone else, which could bring this number to 20,000. If that process replicates one more cycle, we are all of a sudden at 40,000 cases (30,000 new infections plus the 10,000 undiagnosed). This is not to say that this will happen, but it certainly is in the realm of possibility. Most importantly, if we can promote global testing (and it has been demonstrated that this is more effectively done when community leaders get tested and promote it), we will certainly move closer to getting these undiagnosed folks in for testing.
A few years ago, Senator Durbin commented to me that the government could not afford to promote universal testing. I don't think we can afford not to, given the high cost of treatment. In fact, the Centers for Disease Control is now encouraging all people to get tested.
Even at an average of "only" 30 new cases per year, that's 30 families. And this also doesn't count the families of people who live out of DuPage County. And, with treatment costs of $20,000 per year, do the math. And, if you are one of the 30 (or families of those 30), or someone with HIV, or lost someone to AIDS, think how hurtful it is to know that your elected officials look at your life and pain as a statistic.
Finally, when everyone gets an HIV test, it moves us all closer to the truth about our community. In the ethical analysis, doing this does no harm, and there is a community benefit. It is rare when the benefits so clearly outweigh the costs.

We certainly have our work cut out for us, but as Queen Latifah, fellow Rutgers grad, says in her new HBO film in which she plays an HIV/AIDS activist, "We will keep talking about this as long as people keep getting HIV".

2007-02-12T08:39:00.000-08:00

Cathy Hetrick, my colleague with Mosaic, and I just recently returned from Kenya. We were there to continue our community partnership with people from Buchifi. Emotionally, it's a draining experience, especially since we are trying to do prevention. The challenge of prevention is culture change. Not easy, slow, and often frustrating, but necessary, both in Kenya and at home.

Below is something from the trip:

Kenya/Can you/Will we?
- Brad Ogilvie

Beautiful Country
Hard Country
Dead dog on the roadside, killed by a car
Dead Child on the roadside, killed by a car
People Standing
People Staring, No sign of an ambulance
Witnessing doesn't change the truth
It changes your truth
About the world as it is

So, as we return
To our world of healthclubs
of coffee shops
of playdates,
of resorts, vacations, and therapy
and massages and healing arts
How do we never forget
That we are one world
That Kenya exists everyday
But not only in Kenya,
at home as well.
People die from AIDS at home
People acquire HIV at home
And it’s not just AIDS
It’s poverty, hunger, disease
It’s homelessness, it’s greed, it’s climate change
And we say "but it's Africa that matters"
We now are the Kenyans of America
Waiting, watching
For the ambulance that doesn't come.
How do we become that ambulance
That responds to that child of humanity that we all see
That is lying at our feet.

But instead, we look away
we analyze and study
We gaze overseas or deep within
Never realizing we see the same thing
Never making the connection
that when we start from afar
or deep within, and don't look between
we must sidestep the child
That is lying at our feet.

How did that child get there?
Who is this child?
Was he a boy, or was she a girl?
Was he gay or was she straight?
Would she have been a doctor
or would he have been a drug addict?
If I could have prevented this,
would it matter?
Should it matter, if
I can stop another child from lying dead at my feet?

To look in horror,
To look away,
To shake our heads,
To say "That's another world" or "That's not my concern"
Will not do.
We cannot save this dead child at our feet.
It is the next one, and the next one
That matter now, in Kenya, in Chicago, in Salt Lake, in Wheaton
So that we no longer stand and stare at the dead child
That is lying at our feet.

This was written on Wednesday, January 24, 2007 in Kericho, Kenya on the return trip from Buchifi to Nairobi. The first six lines are actual scenes, not metaphors.

2006-12-29T07:59:00.000-08:00

I am usually very pleased with the press coverage of the NY Times, but when it comes to HIV/AIDS issues, I often think they do more harm than good in their coverage when they oversimplify things to the point that the reader can become confused without knowing it. This past week, there were two such examples.
First, there was the editorial about the high rate of malaria among people with HIV/AIDS in sub-Saharan Africa. The editorial ultimately was pushing for more research into treatment for malaria (that's a no-brainer), but the repetitive "HIV/AIDS/Malaria" mantra does a disservice to both HIV/AIDS and Malaria challenges. Of course there is a higher rate of malaria among people impacted by HIV/AIDS: people in the latter category have compromised immune systems. Plus, we know well that the poor are disproportionately impacted by HIV/AIDS because of a lack of education, lack of testing and prevention resources, and a daily desparation that places them at greater risk to exposure, as well as cultural practices (such as group circumcisions without adequate sterilization practices; this too seemed to be "news", as an article appeared about traditional cultural practices like shared breast-feeding responsibilities in some tribes was spreading HIV/AIDS, and this was a surprise to "experts"). Many of these same folks cannot afford mosquito netting or anti-malarial medication; combined with the compromised immune systems, the higher rates of malaria (as well as jsut about any other condition) should be expected and a surprise to no one. The damage, from a media perspective, is the melding of HIV and malaria, rather than using these connection to better understand both and how they are different. We already know from my work that the majority of people here in the US (including nurses and healthcare providers) don't know the four body fluids that transmit HIV, so when the media adds malaria to HIV, without truly clarifying and appreciating how they are spread, this is only going to get worse. The behavioral, cultural and transmission issues are vastly different.
The other news was that circumcised males have far lower rates of HIV than uncircumcised males. Fantastic! But, in the NYTimes article about this, the word "prevention" was connected with this news. To this I shout "DANGER!" If people think that because they are circumcised, they have to take less precautions, we are on a slippery slope to a no good place.
Every day, it seems clearer to me that we need a serious session of re-defining what we are talking about. The paradox is that we seem to need a simplification of definitions (such as HIV as a disease of body fluids so that no one is surprised when they read that shared breast-feeding is spreading HIV) in order to better understand it in all its complexities and ultimately end the spread of HIV/AIDS.

2006-12-29T07:56:00.000-08:00

Tuesday, July 25, 2006

Social Service Lament
We here at The Mosaic Initiative are committed to HIV prevention, and have a concrete goal of blanketing the local community with an effective prevention message between now and December 1, 2006. Someone recently asked how often we will be promoting this; I'd say for the next two years, if absolutely everyone in this country (and around the world) were to be tested, AND were then adequately educated about "not spreading/getting HIV", we could make dramatic shifts in the current course we are on. What is interesting, and perhaps telling, is that the arenas where people are at the greatest risk in our local community receive their services seem to be the most reluctant to engage in the work. I have recently started to shift focus from churches to social service providers in developing the fall campaign. Of the nearly dozen providers I have contacted in the past months, two have replied. This despite having met some of the others face to face and agreeing to follow-up with a call. I don't think that the reluctance is deliberate or, possibly even conscious. I think it is more a function of a systemic demon - people are so overworked that they don't have the opportunity to take a step back, be introspective, and reflect on how our missions (really, no matter what our individual causes) really overlap. I also believe that when we work together we can accomplish so much more, but the institutional divides create barriers to effective and efficient partnerships. Of course, people may feel that HIV is not "their issue" (as I've been told), but when we are talking about prevention, isn't that something that can benefit everyone. Further, if the promise to to work with people, and we will do much of the leg/grunt work, we can actually help ease some of the burden. The need to collaborate is here, but the challenge to do so requires deep change, and this is where I believe the "status quo" of service continues to trump effective prevention.
posted by mosaicinitiative at 12:10 PM

2006-08-29T08:38:00.000-07:00

This week marks the anniversary of the disaster we know as Katrina. More than a natural disaster, this was one of those events that brought to our consciousness the things that exist in our world that we might be aware of but are able to successfully disconnect from, for better or worse. What we have seen in the aftermath of Katrina that the poverty and class divisions in our society leave the poor horribly invisible on a daily basis, and horribly exposed and vulnerable in the wake of disaster. What we have also seen is a governmental system (from the federal level all the way down to the local wards) and a culture that is slow to react, unable to be proactive (despite clear warnings to impending danger), is disconnected, is rife with “cronyism” and ineffectiveness and corruption, and just not up to the task. And, the hardest part of all, it is a “blame-driven” government, marginally able to be introspective but instead denies responsibility. Now, the kicker is that “the government” is us, it is “we the people”. We all have partaken in the denial/blame process, and continue to do so. Just look at this past summer: Soaring gas prices, wars, tension and mechanical failures throughout the oil-producing regions of the country, and yet barely a dip in the patterns of consumerism, and a big yawn at the shocking profiteering of the oil companies.

So, what’s this got to do with The Mosaic Initiative and HIV/AIDS? Everything. If you merely replace “Katrina” with “HIV/AIDS”, and the subsequent timeline adjustments, you’ve got the same issues, and the same challenges. In fact, I maintain that no matter what one’s cause, once beyond the surface issue – be it depression, suicide, HIV, teen pregnancy, drug abuse, cancer, or most any other cause – we all arrive in the same arena, and that is the arena of poverty, greed, prejudice, selfishness, isolation, etc. And, what we can then tend to do, often with the complicit support of the institutions that evolve to address the cause, is slowly become unconscious to the interconnectedness of it all, and to the challenges of prevention vs. treatment. In fact, most often, the institutional survival often depends on our remaining only semi-conscious – know that there is a problem, but not do what it really takes to eliminate it, otherwise the institution goes away. We can see this clearly with HIV/AIDS because for so long it has been preventable, and in the news, but people still are surprised how bad it is, that it is even a problem, or operate within the false boundaries of demographics and geographics, and to avoid the sometimes painful but hugely rewarding introspection when we ask ourselves “How did it get this bad? What’s been my part in this?”

Being a firm believer that one of the mistakes we routinely make is to pursue answers, looking for safe guarantees where there are none, and also looking to make sure that our own beliefs remain untouched and in-tact. Instead, I think what is most important is in answering questions, we look for what is the next question, and what action can I take to lead me there. The first (pursing answers) can lead to paralysis, as we never really get there, so we take no action. The second, at least for me, results in a balance of flow between introspection and action. With this in mind, perhaps these questions can be of help to all people in looking to not only get involved, but to become increasingly conscious in the process:

1. When did HIV/AIDS come into your consciousness (“Consciousness” being called to respond)? What was the moral reasoning that allowed HIV to raise to consciousness? Did HIV lead you to awareness and consciousness about other issues, or did your consciousness about other issues lead you to HIV/AIDS?
2. When were your first aware (“Awareness” being heard of, knew of, but not called to action or compassion) about HIV/AIDS? What was the moral reasoning that allowed for awareness but not consciousness?
3. Knowing now that HIV/AIDS first emerged in the early 1980’s, how does your own timeline of awareness and consciousness overlap?

These questions can open the way to the deep issues that divide and thwart our collective efforts and desires. It is my hope that they can help break down the walls of separation, and promote the unity we all need.