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
Wednesday, February 17, 2010
Enough with the Urgent Demands to Maintain the Status Quo
Over the past week, AIDS organizations and workers around the world have been experiencing wake-up calls. Out of Uganda was the article in The Wall Street Journal that the rate of people getting tested is slowing down because treatment programs are less available and, without that incentive, what’s the point of getting tested? In Washington DC, GOP House members are calling for a more thorough vetting of federal dollars spent on AIDS programs in the District in light of the report in the Washington Post last fall about waste and corruption. No doubt, these House members are looking to score political points, and shame on Democrats for not also calling for greater program accountability thus allowing this to degrade into another partisan issue. The predictable reaction among AIDS advocates in DC has been silence or added layers of blame and denial, stating that the corruption occurred under the Bush Administration (forgetting the fact that the Bush Administration did not commit the corrupt acts, at least in this case). Then, this morning I received an e-mail from the AIDS Foundation of Chicago about the Illinois fiscal crisis. The writer of the e-mail stated that this is “the most serious state fiscal crisis (he has) seen in … 12 years”. You would think that all of these, clearly illustrating that the challenges are not restricted to any one area, would lead to urgent calls for community action. They are all indications that we are on a slippery slope to losing many of the gains that had been made in the fight against AIDS, and perhaps it is time to shake everything up so we can get back on a positive trajectory. But no. Instead, the calls to action are to sign petitions and lobby to get more dollars back into the same system.
Personally, I cannot get excited about any of this. Waste and corruption has been rampant in AIDS work for well-over a decade pretty much throughout the world as organizations have stubbornly refused to commit to getting ahead of the HIV-curve. For almost a decade now, I have been convinced that a vital piece to stopping the spread of HIV is that everyone – E-V-E-R-Y-O-N-E – knows his/her status through testing. The constant message I have said is that testing includes education and compassion, and that this is a community responsibility, not a government-funded program. Routinely, people have responded by twisting and contorting almost everything in order to keep HIV-testing and education the purview of “AIDS Inc.”, with comments like people can’t be trusted to do this right, or people will find out they are positive and then kill themselves. Data does not support this, but the very same people that demand factual, proven-effective education create myths about testing with no facts to back them up and no desire to test the theories.
I have seen the waste first-hand. I have not seen, perhaps, the blatant corruption of stealing and pilfering as has been reported in places such as Washington, DC, but I was not surprised by it, either. I have seen the corruption of greed and the waste of unnecessary expenditures, “needs assessments” and other kinds of delay-tactics that take time and money but by the time they lead to action, we are even further behind the curve. Some examples:
• Executive Directors blithely saying they only come to “partnership” meetings because they get money from the partnership and not being challenged to really collaborate.
• I have been recruited to be a participant in HIV-education presentations in order to meet a monthly funding quota, not because I needed the education.
• In the mid-1990’s, I was kept as an active caseload while not receiving any services, effectively being a statistic for funding.
• When I ran an AIDS Housing organization, the greatest pressure was to keep the apartments full regardless of whether the prospective resident was appropriate for that kind of housing. I resisted often. During this same time, many residents received travel vouchers to get cab rides for MD appointments at over $100 roundtrip. Public transportation could do it for under $15. Clients were given this independent of any physical-needs consideration; it was simply because the funds were available.
• One year in Kenya, I was told by a British worker that the US dollars are plentiful, but not very effective if spending must be done by the guidelines (Abstinence-only education), as they do not meet the community’s reality.
• I co-chaired a housing needs assessment in Chicago from 2000 to 2002. Despite my concerns about the waste of time and money put into the process (including bringing in out-of-state consultants), the project went on. The report provided no new information. The ultimate was this: the overwhelming majority of people with HIV/AIDS did not want AIDS-segregated housing. This was ignored because an AIDS housing organization had already made plans to build one. The ground had not been broken yet, but they proceeded anyway.
• As funding started to decrease, already-funded programs were forced to collaborate more. Prospective applications for grants are now often restricted to previously-funded programs, thereby decreasing the opportunities for truly innovative new ideas to emerge.
• Most recently, I have been participating on a committee to develop community-wide test and treat programs (under the purview of NIH and CDC). It is an expensive proposition that does not alter the current system at all, relying on even more funds in the future to be successful.
Throughout much of the 1990’s and into the new century, the mantra was “spend it or lose it”. I remember thinking to myself that the day will come when it will be “spend it AND lose it”. I always felt strongly that it is better to spend wisely and return funds if necessary rather than foster dependency on an impermanent system. It seems like that day has finally come. Sadly, what seems inevitable is that people all over the world – including in Illinois – with HIV are going to increasingly not be able to access funded treatment programs, HIV-prevention programs are going to be reaching less people, and HIV-testing will be increasingly limited to the highest-risk groups, always the most difficult to cherry-pick out of the fabric of society.
Instead of any innovative calls for community action, we are left with the same players putting out calls for people to advocate for the government to come up with more funds for these very same systems that, when the money was flowing, had no qualms about spending wildly and often unnecessarily. From city halls, to state capitals, to Washington, DC, people are converging (at no cheap cost) to learn how to lobby for dollars for the status-quo system both here in the US and in Africa, and they will be lobbying to systems that are flat broke and not going to be sympathetic.
If our AIDS leaders can come up with nothing better than “we need more dollars”, I say “enough”. It's been over two decades since AIDS, Inc. has come up with anything new or innovative, despite the fact that technological development now offers effective treatments, and we have the capacity to self-administer HIV-screening with results in 5 minutes. It’s been 8 years since I met with Senator Durbin and asked him to help us lead a campaign to have every resident in Illinois know his/her status. His response: “We can’t afford to do that”. I said at the time, "we can't afford not to do it", and every day, the cost goes up. Since then, I’ve kept to the same message – a message that the CDC now says is vital to stopping the spread of HIV. I know people get tired of hearing it but, just as over the past week many of us got tired of shoveling snow, the task remains, and won’t go away simply because we are tired of it or hearing about it. It will only go away when we take action. It is a simple fact – when we all know our status, our collective education as a society will rise dramatically, and as individuals armed with this education, we can be effective agents for taking this forward. The technology exists that we could do this on the cheap. We just need to change the policies around disbursement of self-administered HIV-screening and stop scaring people with the belief that they need "AIDS, Inc." to survive, and we can start moving.
So, until these urgent calls for action and demands for more funds start to include a strong message for community action to get everyone to know his or her status, and include as a part of their gatherings opportunities for people to learn how to administer and talk to people about these tests, I’m out. Enough chasing the virus. Too much money has been wasted, and too much time has passed. It’s time for the current system to collapse, and let something else emerge.
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.
Labels: corruption, greed, hiv-testing, HIV/AIDS, waste
