Taxes, Lodging, Faith and Service: a deeper look at the work of William Penn House

Thanks to the wonderful world of 21^st century social networking, many people now know of some of the challenges that face William Penn House, specifically the possible revoking of our property tax exemption. Just to clarify, this does not effect our sales tax exemption or our status with regards to accepting donations for charitable purpose. We greatly appreciate so many messages of support, and hope to harness these to influence the DC government to change this. At the same time, based on some of the comments, it seems that this is a good time to help educate the supporting community more about why we are so passionate about changing this.

For starters, while it is true that we are a 30 bed hostel, offering affordable, comfortable and safe housing is not about lodging but is embedded in Quaker values and is an express part of our mission. It is our "Ministry of Presence" in the nation's capital. It is why we talk about it is a practice of "Radical Hospitality" - all are welcome.  Lodging is just the starting point. It is what happens around the lodging where the ministry gains traction.  Here is some of what happens:

• Young adult internships – giving young adults, most often recent college graduates, a chance to live in the heart of DC and continue personal/professional/spiritual development. While interns do have responsibilities to the hospitality, we also encourage and allow for their engagement in other pursuits and consider that their “work time”. Examples from the past include development of Quaker Camps, serving on Quaker committees and with Quaker organizations (Yearly Meetings, FGC, Pendle Hill, AFSC), and developing new Meetings and Worship Groups. We also have active representation in working to stop the spread of HIV in DC with service in the HIV Prevention Planning Group. 
• Gap Year – providing an opportunity for high school grads who are not sure where to go next to develop independent living and work skills, as well as vocational/avocational direction. In an era where college costs are so high, we owe it to the youth to provide viable options for development.
• William Penn Quaker Workcamps. These serve multiple purposes – education, spiritual formation, outreach, and service. This section can be a whole pamphlet, but for now just know that these are ultimately about building bridges between issues, within community, and within ourselves, paying attention to everything from Quaker testimonies to neurological development that supports more open learning and mental health. At the same time, we are committed that these are deeply embedded in the community rather than created for those who wish to serve. To do this takes time, and means we – the staff and interns – are a constant presence in the community, especially when we don’t have Workcamp groups. Integrity demands this of us, and it takes time. Our involvement in the urban and community garden movement is how this is playing out right now. And as Friends Schools continue to explore service learning and Quakerism, these Workcamps and what we learn from them are (for some) and can (for others) a vital resource. In addition, we bring back veterans to help run Workcamps, furthering their own development while expanding the values.  
• Other regular activities such as weekly yoga classes and monthly potlucks, as well as providing meeting space for small non-profits who cannot afford larger spaces but also are doing important work. Each of these has maintenance costs.
• While so many Friends organizations talk about diversity, racism and intergenerational work, as well as outreach and spiritual formation, these are all very much a part of the fabric of our being on a daily basis. It’s truly striving to let our lives speak. 

Income from the lodging subsidizes all of this work. The staff and interns do much of what we do because it is a passion and a calling, but each of us also has to make ends meet, as does William Penn House. We have done a lot to make sure that fees do not exclude participation in Quaker Workcamps, and this, too, is possible because of the lodging. These are our values; they flow from our faith; the outcomes are not always quantifiable, but their presence is undeniable.

So where does this leave us? The immediate challenge is the financial burden that stretches our budget, no matter what our options are. If the final decision is we have to pay taxes for the percentage of guests who are not here for service/education purposes (although that is not as easily discernible as it sounds and would add to the administrative work), we can do this moving forward; sadly, this would mean having to raise rates which, as is always the case, felt more by those with less. Having to come up with the $18k+ is the challenge.  We have talked about increasing staff/intern workloads and reducing salaries to make budget, but how sustainable is that, really? We are already fairly stretched. An influx of new funds is really crucial to keeping our options open and the programs and services vital. (As I write this, we are awaiting the arrival of the plumber to fix the hot water heater - a reminder that a 100 year-old house also has physical needs.)

Again, we thank you all for your words of support. They warm us. Your voice in DC can certainly help. More importantly, if you value a presence like William Penn House not just in DC but as a part of the Society of Friends bringing Quakerism to the world now and for the future, voices alone may not be enough. Donations to cover immediate financial needs are necessary, and, moving to greater sustainability, either organize a Workcamp, make it possible for others to join or join us yourself on either our Pine Ridge or DC Workcamp this summer, or invite us to help you with your own challenges of outreach, spiritual formation and service are other ways to help. These are what flow from our building, and what give it life beyond the lodging.  Please get in touch with Byron (Byron@williampennhouse.org) to explore more ways to get involved.
                                                                                                                               -Brad Ogilvie

Reflections on "Emotional Correctness"

In October of 2006, I was preparing to do a workshop on HIV at a Christian high school in Illinois.  My co-presenters were from theologically conservative/evangelical churches.  As tends to happen during election years as this was, social issues are hot topics, and this year, gay rights/marriage was a big one.  As we were nearing the date of our workshop, one of my co-presenters called me and asked if we could have coffee together.  What Tom wanted to tell me was this: during the workshop, he would not bring up the issue of gay marriage, but if he were to be asked his opinion, he wanted to be honest - that he believed that marriage should be for a man and woman, not same-gender couples.  More importantly, Tom wanted me to know that he deeply valued our friendship, and he did not want that to burn our friendship.  It was a very moving moment for me.

I was reminded of this experience this morning as I was watching a Ted Talk given by Sally Kohn. Sally is a columnist who currently appears on Fox News. She's also a liberal.  She's also a lesbian.  The gist of her talk is that we as a society have been focused on political correctness, but what is more important is Emotional Correctness.  She describes emotional correctness as "the tone, the feeling, how we say what we say, the respect it conveys."  She says that political persuasion starts not with ideas and political correctness, but with emotional correctness that builds relationships.  She goes on to give an example of trying to understand and appreciate the feelings of someone who is against immigration reform because he/she longs for life the way it

"used to be" as being emotionally correct.

All of this really resonated with me.  For almost a decade, I worked and lived closely with social and religious conservatives doing HIV/AIDS work.  I saw so much of what Kohn was talking about.  I saw goodness in people and places where I expected Bible thumping and had been taught to expect hatred and ignorance.  Instead, I found respect, friendship and love.  I remember sitting with people who would talk about their beliefs about gay people, for example, that were far from where I am, but we were having conversations, exploring and appreciating the underlying beliefs and our struggles.  I sat with one church group to talk about HIV/AIDS work in Africa.  They expressed concerns about a gay person (me) being at the table.  I said that as long as they did not physically hurt me, we could still work together.  The levity and respect made conversation and action possible.

I also learned to appreciate the role that love plays in peoples' actions.  Once, at a Pentecostal Church, I watched a colleague talk about the challenges of opening doors to gays and lesbians.  Two women in the audience were vocal that it was gays and lesbians who needed to change, not the church. I marveled as my colleague held these women through their anger until it became clear that it was love of their daughter/sister (respectively) and love of their church that were tearing them apart.  It was love, not hate.  This is what I think Kohn is talking about - that we are all human; we all have love.  As she states, we liberals can be very smug and righteous in our political correctness, but this does not necessarily allow for persuasion.

It was during these days that my own faith deepened as I was challenged to articulate what I truly believe.  I was working with people fueled by their faith, and they were curious about mine.  It was then that I started to say that, for me, the core of Quakerism is that there is that of God in all, and ours is to joyfully seek it.  That meant having faith in others' goodness ("respect"), and enthusiastically appreciating that, despite our political and social differences.  It is what continues to be what I strive for in my work and life.

-Brad Ogilvie

Institutions trying to Usurp a Movement

It has been interesting to watch the doings on at the various occupations around the country. In particular, watching some groups and organizations that grew out of movements of the past are now trying to latch on to the "Occupy Movement" to try and stake a claim in it has been most interesting. HIV/AIDS organizations and activists, Jim Wallis' Sojourners, environmental groups, healthcare groups, and organizations such as AFSC are all looking for ways to somehow get their message on the radar. Some seem to be trying to remain viable; others (Sojourners most blatantly) are using the movement as a fund-raising opportunity. Let me just say, I'm normally a big fan of Jim Wallis, but I was really turned off to get the most recent fund-appeal e-mail from Sojourners titled "we've been doing this for 40 years" and then asking people to join their "sustainers circle" (even going so far as offering a "free" gift if you donate which, to me, isn't free but bartering). It is exactly this kind of exploitation and manipulation done by the "establishment" that, it seems to me, many of the occupation movements are rejecting.

My take is that this occupation movement is a culmination of a whole bunch of things, and it is also unlike anything we've seen before. It's the result of not just leaders but entire communities punting on big issues and always deferring on making serious changes and difficult choices for a later day, and that day is now. As NYTimes columnist David Brooks observed last May, we now have young adults who played by the rules their whole lives (structured childhoods of playdates, sports, and academics driven not by learning but by test-scores and grades) with the promise that compliance would be rewarded, but instead are faced with high-rates of un- and under-employment and burdened with loans. There is anger for sure, but there is also the recognition that the previous generations failed to prepare for the future. This is a non-partisan issue; it was under the Clinton years that there was an explosion of McMansion's, big cars and unprecedented debt (to that point) - very much an "if it feels good, do it" time. It's not that this was Clinton's fault or responsibility; it was just part of the era we have been living since the 1950's of American capitalism.

It is easy to see that all the various social, environmental and health issues are related to this movement. In fact, there is a strong element of chaos related to this movement as it attracts the passionate, the disgruntled, the angry, as well as the dropouts looking for company and a chance to get high. A look at the various signs that pop up at these places can speak to this, as the "issues" are clearly present. But it is also fair, I think, to understand the rejection of the organizations that have been established to address these issues or, at the least, be very skeptical of their intrusion into the movement. Taking HIV/AIDS just as an example: at what point do we look around and say that the outcomes (in terms of the continuing spread of HIV and the growing wait-lists for treatment) are not just the result of bad politics or inadequate funding? It is also the result of an entrenched industry that played "spend it or lose it" that wasted millions of dollars in needs assessments and studies. It is not a movement but a business that holds expensive conferences in glamorous places, patting itself on the back but slow to adapt to new realities and technologies. Too often it is driven not by mission completion but by protection of turf, and now wants more money. There have also been organizations that have slashed programs and staff, but maintained salaries and pensions. It is the lack of balance to sacrifices that this generation is experiencing. Consider, as another example, in the wake of the Gulf oil spill last year, not one of the countless e-mails from environmental groups that I saw that called for protests or for more funding also called on people to reduce consumption. You can replicate this process with almost all the issues of our times. For many of these organizations and institutions, the goal is to keep their issue alive in people's faces, but they don't want to really be questioned about their corporate presence and how it influences our lives, which is the very thing I see much of what this movement is about.

It will be interesting to see where this movement goes. I fully support the idea of a major community transformation that connects us closer to the ideals we espouse (see another David Brooks column for more about this). For me, it's not just about taxing the rich, nor is it about healthcare for all. It's also not mine to say what it is about. I do think that a part of the movement that is healthy is that we all need to be fully engaged and responsible. If we are educated and informed while being engaged, we will absolutely be a better society. It will also spell doom to all those organizations that want to make this their cause and exploit it for their own institutional survival. I can't say that mine is to go and Occupy anything, but to do what I can to nurture the transformations for a better, more just world.

Enough with Urgent Calls for 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.

When was the last time we tackled a major problem?

This past Sunday in The New York Times, Frank Rich wrote a column called “The State of the Union is Comatose”. He cited historian Alan Brinkley’s observation “that we will soon enter the fourth decade in which Congress — and therefore government as a whole — has failed to deal with any major national problem, from infrastructure to education.” This statement really jarred me, and has me thinking that it’s not just government that has failed to deal with any major national problem in a proactive manner, its our whole society.

I have been spending the past few months working with colleagues at William Penn House and Washington Quaker Workcamps on ways to move Workcamps into the 21st century. In doing this, I have been doing some reading about the history of Quaker Workcamps and Service Learning. The origins of both of these can be traced back to the early 1900’s, and both grew out of the pacifist movement. At the time, given the new technologies of transportation and communication (as well as of warfare), they were very innovative. But now, a century later we continue to experience wars, environmental and economic violence and injustice that include poverty, hunger, homelessness, and preventable disease.

At the same time, I have been continuing my efforts to being a part of stopping the spread of HIV. This week has been interesting on this front as well. There was an article in the Wall Street Journal last week about the pace of funding for HIV-treatment in Africa is falling far behind the needs. In Illinois, the word has come down that prevention programs are being eliminated so that current dollars can be allocated to treatment programs. I have continued to be a part of a consulting group for the CDC and NIH to develop protocols for community-wide test-and-treat of HIV, and continue to be amazed at the slow pace of implementation as HIV enters, ironically, its 4th decade as well. Meanwhile, waiting lists are starting to emerge for treatment.

Meanwhile, the earthquake in Haiti has awakened the general public to the fact that there is this poor nation with a history of corruption and neglect in our hemisphere of the world. As we have seen with tsunamis, AIDS, and hurricanes, these events are not what seem to shock us, but the devastation these things have on the poor that really wake us up. In general, this is where Workcamps and many Service Learning programs, as well as faith –based mission trips, tend to go – places where the devastation is clear, and there are some quick fixes that require short-term sacrifices, but not transformative changes in how one lives his/her life. They have the potential to ingrain in people that we should always be chasing the devastation, not doing the hard work to minimize the harm of the next one – whether it is disease prevention, or addressing the despair and injustices that are the fertile ground for natural and man-made disasters to do their worst.

The big question I have with all of this rattling around the brain is: when was the last time social services/social justice movements have tackled anything new or tackled things in new, innovative ways. We for the most part have become a society that works at the margins – we will rise somewhat to the occasion when people have been devastated by a disaster, and we will advocate/blame the government for doing the rest (such as not giving enough money). These are just tweaking the societal system that needs a major overhaul. If ever there were a wake-up call for community action that is responsibility-driven, it is now. But I think the harsh reality is that social services has become an industrial complex as much as the military has, and we have become too complacent and dependent on these institutions to do our work. How else to explain that people cannot fathom spending $10 for an HIV-test as part of a “greater good” effort.

No doubt that technological advances have carried their weight. We have cars that are lighter, get more miles per gallon than ever. We have communication systems that make connecting easier than ever. We have had advances in medical testing and treatment. Unfortunately we often use these technologies to make our life easier and more of the same. When was the last time you heard someone talk about how their hybrid car has made them more conscious about driving, and they are actually driving less and walking more?

Another reality is that I am not sure Workcamps/Service Learning has had a new, innovative idea to breaking the cycles of violence and injustice. But with a century of being under our belts, perhaps it’s time; in fact, there is no better time than now. We have the means to connect with others, to share ideas, and to have voices heard far more than ever before. I know that here at William Penn House, and in conversations with folks in the community, we have started to really consider what this might look like, including that service is much more than physical labor; it’s community-building in a way that the health of the community comes before the needs of the individual, and is accomplished with community members as equal partners, not volunteers/recipients.

I can say the same for HIV/AIDS services: outside of technological advances, when was the last innovative thing created? The same funding boxes for the most part are there, and there is an institutional rigidity to maintain turf. But with the cuts in prevention, all of a sudden we in the community are going to need to step up. AIDS organizations will inevitably say we need to advocate for more dollars: I’m not so sure. I think we need to stop advocating so much, and start doing more. I also think that some of the basic testimonies of Quakerism can help lead the way, if we can only get the institutions out of our way.

Are we going to lose the fight against HIV?

It was with sadness and disappointment, but not surprise, to read the Wall Street Journal article published January 30 titled “War on AIDS Hangs in Balance as U.S. Curbs Help for Africa”. The gist of the article is this: “Seven years after the U.S. launched its widely hailed program to fight AIDS in the developing world, the battle is reaching a critical turning point. The growth in U.S. funding, which underwrites nearly half the world's AIDS relief, has slowed dramatically. At the same time, the number of people requiring treatment has skyrocketed.” The article goes on to point out that the global effort to prevent new infections has suffered some reversals due to a combination of factors such as complacency because of effective treatments, abstinence-only education, and testing that continues to suffer from the oppressive burdens of prejudice and homophobia.

As I sit and write this, it is a quiet Sunday afternoon and I am reflecting on, among other things:
• The radio program presently airing about being gay in Africa (in Namibia in particular), and how policies that outlaw homosexuality devastate HIV-prevention efforts. American Family Association radio host here in the US also thinks gays should be put in prison.
• The sermon at the National Cathedral this morning that talked about how Love, not our love, but God’s Love, is everywhere
• The Sunday forum at the Cathedral, with Congressman Tom Perriello (D-VA) talking about faith and politics. He mentioned how the financial bailout rewarded failure, and it had me thinking that when huge dollars are given to the big players in HIV/AIDS work (“AIDS, Inc”), are we not doing the same thing?
• In 2003, I pitched the idea to Senator Durbin that Illinois be the first state in the country to commit to getting all residents tested as part of the effort to get ahead of the HIV-transmission curve. He said “we can’t afford to do that”.
• This Wall Street Journal article, while certainly ringing an alarm that we all need to pay attention to, also perpetuates the misconception that “global HIV” is “Africa-only”. We are starting to see waiting lists for HIV-treatment in this country. If we cannot offer people who test positive some treatment options, we have lost a major selling point for testing. This is not an African truth, it’s a global truth that exists here as well.
• The two written comments to the WSj article include these comments: “This is a classic case of trying to fix problems in a retarded society using modern technology…AIDS isn’t the problem, it’s only one of the many symptoms…Until a people decide they want to join civilization, no amount of money will save them…” and “maybe what we are seeing is nature (gods) way of population control?”. Gotta love the compassion of ethno-centric Americans.

The nice thing about blogs vs. publications is that there is wiggle-room for venting, and that’s what the combination of the above drives me to. Are there no adults anywhere that can sit people down and say, ok, let’s be serious here: this is a deadly disease that is very treatable, preventable not curable, costly to treat, and the sooner we contain it, the cheaper the collective treatment costs will be. I’m not a public health expert, theologist, politician, financial whiz, prophet etc, but it just seems increasingly clear to me that we are a society that is trying to tinker with a system that needs a major overhaul. HIV/AIDS is both an example of this in action and an opportunity to learn what it takes to make a major overhaul. Funny thing is that this overhaul is not one of bricks and mortar, but of mindset. The image that comes to mind of our current state is this: the best mechanics in the world have been asked to work on the engine of an old car. They are all looking at the parts of the engine, talking about a new air filter, an oil change, perhaps some spark plugs. Then a kid walks by and points out to them that the car has rust, torn seats, no tires, smashed trunk, broken windows, and is basically beyond repair. By focusing on the engine, they did not see the big picture. That’s what we seem to have with HIV/AIDS work; no one in a position of authority seems to be willing to connect the dots. For example:
• The need for treatment will go up no matter what we do. Ideally, if we can quickly implement community-wide, compassionate, non-judgmental HIV-testing, the need will spike dramatically as we quickly decrease the collective “undiagnosed”, and then the needs for testing and will decrease over time. Under the current testing system, however, that tries to “cherry-pick” the most at-risk from society (basically the approach of the last 30 years), we will stay on the same course of ever-increasing needs for treatment.
• We cannot effectively stop the spread by saying everyone should be tested, and then focus on “them”.
• It is not possible to encourage the openness needed to have everyone know their status while condemning and judging the people most at-risk.

I could go on, and have for years. The point is, this WSJ article should be our wake-up call. I remember saying to a friend in Wheaton, IL, perhaps 4 years ago that the reason we were so insistent on community-wide testing in Wheaton is that’s where we were, we have to start where we are, and if we can’t do it here, is it realistic to expect places like Africa to take the lead? Most importantly, I felt then that if we do not implement a program like this locally, regionally, nationally, and internationally, we will see HIV become worse. I fear that that day has now come. We humans think we are so smart, but this simple virus has exposed a dark side of us that we need to overcome: greedy, arrogant, judgmental, afraid, and very short-sighted.

Beware the Common Enemy

What do Stalin, Saddam Hossein, and the Taliban all have in common? Each one, at one point in our history, was an ally of the US. It was not that these people were at one time fundamentally different in character than what we now know them to be, but it was that we shared a common enemy; with Stalin, it was Hitler; with Hossein it was Iran, and with the Taliban in Afghanistan, it was Russia. In the latter two cases, there was much more to it than just the common enemy. There were also issues of corporate greed, and the desire to control oil that was the underpinnings of the US economy that was dependent on the auto and housing industry. As Franklin Roosevelt said about a mid-20th century Nicaraguan ruthless dictator, "Somoza may be a son-of-a-bitch, but he's our son-of-a-bitch". (Note: there is some question about whether Roosevelt said this, but there is no doubt that he was a strong supporter of this corrupt, greed-driven dictator because he was against communism)

What does all this have to do with current events? Beyond international policy practices that still continue, this phenomenon of "my enemy's enemy is my friend" has reared its head in the healthcare debate as well. The "enemy", in this case, is Obama. For some, it is his policies, including a proposal for a single-payer option in healthcare. There is certainly room for debate here, as there are legitimate concerns about funding a program like this. (I personally have two concerns about the healthcare issue: the first is that we expect too much from healthcare, and the second is that government is an institution that is way too slow and bureaucratic to really get anything done, but I welcome the discussion).

For the fiscal conservatives who have legitimate concerns about either the financing of a program or merely have concerns about the role that government might play in healthcare (keeping in mind that Medicare, Medicaid, and the VA are already in place), having your issues heard is currently being drowned out by other "anti-Obama" allies who have more insidious motivations. Among the allies include a colllusion of: corporate greed folks, the Republican leadership that is looking for any opening to regain some power, a right-leaning media looking for viewership, and blatant racists who simply cannot believe that a black man is President. Here's how, to me, it seems to be playing out: The more corporate folks (Dick Armey, healthcare corporations, Fox News) whip people into an emotional frenzy that then comes out in the form of fear of communism, fascism, government killing old people, loss of gun rights. The racism gets thinly veiled by comments about the country being taken over by Muslims. The success of this movement is dependent on keeping people's fears heightened, and calling these fear "patriotism".

For the benefit of all of us, it would be great if we could all take a deep breath, relax, listen, and re-engage the frontal lobes. If we could open up dialog with real exploratory questions, and seek common solutions, we would all benefit. But for those who really have concerns about any government expansion in the role of healthcare, it is important to pull apart from those who are dependent on polarizing effect of "my enemy's enemy is my friend" approach. The blatant racists, partisans looking merely for power, and corporate greed folks are exploiting you for their personal agenda and care little for your real concerns. In fact, they don't want you to think. They just want you to be angry.

What we did on our summer journey into HIV-testing

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.