Friday, March 05, 2010
The De-Institutionalization of HIV/AIDS
Part 1
1996 was a critical year. I had dealt with my own personal crisis of finding out in 1992 I had fairly advanced HIV (my t-cells were around 200 at initial diagnosis). I had come to grips the "fact" that I would most likely not see my 40th birthday in 2001. I had finally gotten a full-time job working in HIV/AIDS services after spending a few years volunteering in various capacities while biding my time in more arduous social service jobs. I was going to be doing counseling at a holistic health clinic for people with HIV/AIDS. I had also been a client at this clinic. The pay was not great, but I didn’t care. I was doing something fulfilling – providing support for people who were on a fast-track to death, as I was. As a group (as people living with HIV, and as organizations committed to supporting people with HIV), we were resigned to a fate where HIV=death. Just two years before, the news about HIV-treatment was not good. Treatments were minimally effective and highly toxic. Weekly gay newspapers were full of obituaries of young men. Increasingly at this clinic, the demographic of clients also included people of color, especially black women. It was a real community of love for those of us who had only that to hold onto.
Then, the world changed. Protease Inhibitors were introduced, and I remember one of my first thoughts was “Uh, Oh”. If these new medications were as good as promised, the landscape had just dramatically shifted. I remember running support groups, and seeing people almost magically becoming healthy – in one case literally rising from his wheelchair. Andrew Sullivan, senior editor for The New Republic at that time, wrote a cover story for the New York Times Magazine called “When Plagues End”. He observed how skeptics were challenged to hold on to their skepticism in the face of such news, and how the big shift was that AIDS was no longer a death sentence, but a chronic condition (the entire article can be seen on-line at 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.
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.
Labels: bureaucracy, greed, HIV Prevention, hiv-testing, HIV/AIDS, home-based testing, Rackets, waste
Thursday, October 08, 2009
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.
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.
Labels: bureaucracy, hiv-testing, HIV/AIDS, Rackets, self-testing
Thursday, September 03, 2009
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.
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.
Labels: AIDS, bureaucracy, healthcare, HIV Prevention, hiv-testing, Rackets, stigma
Monday, August 17, 2009
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.
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.
Labels: bureaucracy, hiv-testing, HIV/AIDS, home-based testing, home-testing, politics
Wednesday, June 03, 2009
Every great cause begins as a movement, becomes a business, and eventually degenerates into a racket.
--Pat Buchanan
When did the AIDS movement become a racket? And what is it going to take to go back to being a movement. At this point, HIV/AIDS organizations are clearly a business. The degeneration to being a racket has happened perhaps most clearly in the arena of HIV-testing as organizations seem more invested in reporting demographics and meeting numbers than doing what they can to get everyone to know his/her status. This is not to say that the people who work in these organizations are conscious of this. I think it is more a matter of a corporate “groupthink” that takes over.
Here’s what I mean:
At a meeting of AIDS organizations last week that is planning a series of events around National HIV-Testing Day (June 27), I mentioned that one of the things I am working on with some colleagues is advocating for FDA approval and use of home-based HIV tests. The response I got from was swift and harsh. The people that work for various organizations, from public health to HIV/AIDS to glbt support, were adamant that home-based HIV-testing was a public threat, that people NEED counseling, and that with home-based testing there is no way to track and report accurate numbers (as if estimating between 40-65,000 new cases a year is “accurate”).
Many of the reasons for opposing home-testing are familiar, and not unjustified. Certainly, many people who do go for HIV-testing do benefit from education and counseling. And, yes, from a public health standpoint, it is somewhat important to be able to track the virus by knowing some of the demographic and transmission data. But the fact is that, as one person openly admitted, the reason I got that kind of reaction was that I was touching on people’s livelihood – jobs. Now, I am not against jobs for people that need them, but when they come at the expense of a mission, then we need to take pause and have a real conversation, something this group was not able to do at that time.
The fact is that the current system of providing HIV-testing is not accessible to the broad community. Clinic hours are limited, clinics are not always accessible, and certainly, despite pledges of confidentiality and anonymity, it is hard to maintain these in a public arena. Furthermore, the pre-test questionnaires can be off-putting, especially for people who are nervous about being too forthright about their lives. Consider the cases of people who have been scorned by family, church, or military because they were honest about themselves. To ask them to trust strangers in a clinic is a stretch. Personal physicians are another option but, despite Centers for Disease Control guidelines, this is not even close to happening routinely. I have heard a few stories of openly active gay men needing to explain why they are asking for HIV tests. In one case, the man was not offered an HIV test by two successive doctors despite a persistent rash (he subsequently was diagnosed with full-blown AIDS). The bottom-line is that even if the current system worked optimally it would not be easily accessed by everyone, and the current system hardly works optimally.
My own personal experience: after the above-mentioned meeting, I decided to see how the current public testing works, so I went to the local (DC) HIV-testing clinic. I got to the receptionist, and asked how I can get an HIV-test. He gave me a clipboard with a 4-sheet questionnaire to fill out. I said I don’t want to fill out any information, and he indicated three areas that needed to be filled out (including a place to put my name and signature). I returned a few minutes later, after scanning questions about my sexual identity, sexual preferences (meaning what kinds of sexual activities I engage in), and drug use, and said I did not want to answer any questions. His first response was that I could not get tested if I did not answer the questions, but that they were not going to be reported. I pushed the matter, saying that I thought the tests were anonymous. He called for another person to come over, who then said he would see if he could get someone to test me. A few minutes later the tester came and met me and took me back. Briefly, she was great – compassionate, understanding, and ever-so-gently trying to squeeze information out of me. After completing the test, I returned to the waiting room. While waiting, she called two other people into her office, asking “are you here for testing?” Basically, by the time the tester finally meets with a person, many people in the waiting room know why you are there. In addition, despite the fact that the questionnaires are not mandatory, anyone who does not know his/her rights is not informed.
So I am now more convinced than I was before that the present system is not accessible to all people, and is actually somewhat intimidating. What we should be doing and will continue to do is to advocate for and even start to offer options for people. At a minimum, it seems there is fairly universal agreement that home-based testing could be useful for the following:
• Women who take home-pregnancy tests
• Couples where one of the partners is HIV+ and the other is HIV-
• People who have been tested before and like to make it a routine
• People who are feeling intimidated and or a need for complete confidentiality and anonymity, but are trying to be responsible
• People in rural and/or conservative areas where asking for an HIV-test raises suspicions
• People who want to be tested, but current testing systems cannot accommodate great numbers or are threatened with losing funding because of demographics.
For the next month, we will be stepping up our efforts to raise these issues and to advocate for more options.
--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.
Labels: bureaucracy, hiv-testing, home-based testing, prevention, stigma
