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, June 29, 2009
What happens when an entrenched system faces competition?
We found some of this out last week. For years, I have been working with a diverse group of people to promote that all people know their HIV-status as the starting point for stopping the spread of HIV (see 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.
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.
Labels: hiv-testing, HIV/AIDS, Rackets
