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.

Healthcare, living well and letting go

Last week I was going through the mail during my few days at home and, among the many pieces were a few bills for a medical appointment I had in the spring. The total out-of-pocket expenses for this one appointment: nearly $1000. Granted, this includes the $750 deductible, but given the salary I make, it's still alot (considering that on top of this there is an additional $60/month for the co-pays of medication). As I perused the bills, I looked through the labwork that was done and it was filled with things I have no clue about.

At the same time, I was listening to the radio and the on-going debate about healthcare. No doubt we have a broken healthcare system and we need to do more to see that people have access to healthcare, especially preventive medicine. But looking through my own bills, and reflecting on my own recent interactions with my doctor (whose biggest concern seemed to be that I was rejecting the idea of pursuing elective cosmetic surgery to fill out my cheeks that have thinned out as a result of the HIV-progression or treatment).

What I am noticing that seems to be completely absent from the debate about healthcare is that not only should all people have access to healthcare, but perhaps we should also be having a national dialog about what we expect from healthcare and why. I suspect, based on my own bills, that my MD is milking me for billable services. I know that he needs to be monitoring certain things because of new medications, but I also know that in some cases, if something were off, the prescribed course of action is more medication. Do I really need to know that certain levels of something are off, if I am going to refuse the treatment?

That very week, the woman (Hilda) whose house I am living in died. She was in a nursing home for the past 2 years and had not been out of bed for that time, but on Sunday night she got out of bed and fell, breaking her leg and hitting her head. My friend Marilyn (the woman's guardian) got a call at 6:30 in the morning asking whether she wanted to have brain surgery performed on Hilda. She was told she needed to make the decision immediately, not for the patient's sake, but because this was when the operating room was available. Marilyn was told that the surgery was to remove a clot (for a woman who had been basically comatose for a few months). Marilyn was not told about the broken leg. It all smacked of a healthcare decision trying to milk this woman's estate before she died.

Basically, I think we need to open up the national dialog to include a frank discussion that, yes, we are all on the same train progressing to one common end result. We want to use healthcare to help us get there as safely, happily, healthily and productively as possible. But we perhaps should depend less on healthcare for the quality of life things, and focus on some of the basics, while we also commit to healthier living. I don't know that statistics, but have heard about the high proportion of healthcare dollars spent on the last month of life. A part of this makes sense - trying to extend lives is costly. But we should know that all we are doing is extending life, not saving it.

Friends and Indians

Over the centuries in the US, Quakers and Indians have shared a special relationship in the hearts and minds of many people. Artwork and lore have commemorated William Penn’s Peaceable Kingdom efforts in establishing the Pennsylvania colony in the late 1600’s and early 1700’s. Relative to other settlers and landowners of his time, Penn made a concerted effort to demonstrate that settlers and natives could live peaceably together. As we know now, the vision did not hold, but the reputation of Friends as protectors of Indians persists. Is it deserved? How accurate is it? To put it bluntly, Friends have benefited greatly from the relations with Indians, but have Indians benefited?
I recently had the opportunity to join the Joint Service Project/Western Quaker Workcamp to do some service work on Pine Ridge, the Lakota reservation in South Dakota. The group that was on this trip was Young Friends from Downingtown (PA) Monthly Meeting. Among the things we saw and visited was Wounded Knee, and we heard history presentations about the various treaties, broken promises and violence that took place in this region (including that Mount Rushmore was carved on land that had been previously given to Indians). At the same time, coincidentally, I was reading a newly written book called “Peaceable Kingdom Lost: The Paxton Boys and the Destruction of William Penn’s Holy Experiment” by Kevin Kenny. This book had been given to me by Byron at WPH prior to my even knowing about going to South Dakota.
So, here I was, touring new (for me) territory in South Dakota, hearing about the massacres of the late middle to late 1800’s, while at the same time reading about the violation of treaties and subsequent massacres that occurred in eastern Pennsylvania roughly 150 years prior. It was striking me that the template for what occurred to the Indians from the late 1600’s to the late 1800’s (and really continues to this day to some extent) was established in Pennsylvania. Throughout that history, some very familiar names (Washington, Franklin, Jefferson, Penn, Lincoln, among others) can be seen in a variety of lights. But for differences in time, names could be changed (Massacre at Wounded Knee, Massacre of Conestogas, for example) and the same narrative would unfold.

Some of my observations and thoughts, specifically regarding Quakers, are:
• William Penn, while certainly a progressive for his time, was no prophet. He was committed to trying to live peaceably among Indians, but he was also trying to protect his own extensive land-holdings that were granted to him by the King of England.
• Penn established one of the earliest treaties with Indians, but perhaps did not fully appreciate that the relation that Indians had with land ownership was very different than his. This misunderstanding led to future conflicts.
• Penn’s children were greedy.
• Penn’s early treaties were some of the first treaties to be broken, setting the template for making and breaking treaties.
• Pennsylvania and east coast Quakers were not necessarily good community members and leaders. They wanted to take Indian lands, be rulers of the government, but were not willing to really deal with the conflicts that were emerging. This avoidance of conflict in its early stages continues to challenge us.

It seems clear to me that Friends have greatly benefited (and perhaps we pat ourselves on the back as well) for our intentions with regards to Indians over the years, and to be sure we have compassion for all that has happened. But I also think that because we have benefited from this reputation, we have work to do. We cannot turn the clock back, but perhaps we can look forward with a vision of the Peaceable Kingdom once again. One of the things we heard in South Dakota was that the US government has never apologized for the Massacre at Wounded Knee. That has started some of us thinking that if we are going to be a force for creating the Peaceable Kingdom, perhaps we should start with promoting reconciliation and forgiveness, and then following this up not just with our own trips and project on the reservations, but also with our advocacy to keep promises that are currently in-place but not being met. Basically, it seems like a great opportunity for Friends to earn the reputation of being good Friends to the Indians, rather than simply resting on our questionable laurels in this arena.

Portable HIV-Tests: Do we have to break the laws to change them?

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.

Home-based HIV-testing and the AIDS Inc. Racket

There was a time when people with HIV and those around them were actively banging on and banging down doors of legislators, public health officials, and pharmaceutical companies. If there was even a whiff of a possible treatment there were calls, letters, and protests to get these treatments out to people with HIV even if the treatments had not completed their rigorous trial phases. At the same time, countless alternative and experimental treatments were being done. Some of these at worst were benign (such as massage, acupuncture, meditations, etc.), and for many of us, were instrumental to our need to stay actively engaged in our treatment. There were other types of remedies that were being promoted – such as drinking one’s own urine – that spoke to the desperation of the times. Clearly, the big enemies of the times were the politicians, federal regulators, and the corporate pharmaceutical companies that were slow on investing in the development of products that could help slow the progress of the virus.
At the same time, there emerged a similar fight around means to stop the spread of HIV Condom distribution and needle-exchange programs continue to be political and cultural hot-potatoes, as the liberal left tend to be for full-dissemination of these programs, whereas the conservative right tend to resist such programs, regardless of statistics. The two sides have become so polarized that they often don’t see the emerging new threats out there such as the energized gay porn industry that is increasingly marketing unprotected sex, and the rise in unprotected sex in bath houses, events like the International Male Leather convention in Chicago every Memorial Day, and in solicitations on-line. This, for much of the gay HIV-industry, is like the crazy aunt. We know she’s there and a member of the family, but we don’t dare speak too loudly about it lest our enemies catch wind of what’s going on. Some of this has to do with an AIDS bureaucracy that, to this day, still has not adopted its message about HIV/AIDS to meet the new realities – that HIV is not the deadly disease it was, but is very much something we don’t want to see spreading. This is really a topic for another time.
Despite all of this, however, there is one interesting observation that I have seen over the past few month, that I find both interesting and troubling: home-based testing. For clarity’s sake, home-based testing is simply a test that one can self-administer and get the results within 20 minutes. The technology for doing this has existed for twenty years – it’s a simple assay test that screens for HIV anti-bodies It’s the same test that one gets in a clinic. For many who are afraid to go to clinics to get tested because of the lack of anonymity (you can’t be anonymous if you have to go to a public place, can you?), or for those who live in areas where medical providers may not be warm to the idea of testing their patients, or for those who do home-pregnancy tests and want to also make sure of their HIV-status, or for those who are in mixed “HIV” relationships and want to simply do what they can to insure that they are being responsible, or for those who are willing to spend $10 for a test at home rather than go through a lengthy process, or for countless other reasons, the option of home-tests may be just the kind of thing that can help people access testing and ultimately slow the spread of HIV.
So, where’s the outrage? Why is the FDA making Orasure, one of the manufacturers of self-administered HIV-tests (the very ones that are used in many HIV-testing clinics) go through a lengthy process to get approval to sell these directly to the general public? Where are all those organizations and activists that are demanding more funds and looser rules regarding needle-exchange programs, condom distribution, and mobile testing units? Why aren’t they lining up demanding that the FDA speed up this process, just as they did with HIV-medications that we now know were sped through an approval process despite minimal positive effect and high toxicity? Because they are lined up against approval of greater distribution of self-administered HIV-tests, and for many of them, testing is a job.
I have been engaged recently in an effort to advocate for approval and dissemination of self-administered tests. Perhaps naively at first, I was taken aback by the resistance of HIV-testing organizations. Over time, as I have settled into listening to the reasons why there is the resistance, I have come to see that many of the concerns are not permanent barriers. But there is a lack of conversation stifles creativity and possibility. Furthermore, many of the concerns about home-based testing already exist: many people do not follow-up with care, and the current tracking system is not accurate (notice the sharp increase in the estimates of newly-infected last year from 40,000 to 56,000 – still just estimates), nor is it timely as it tends to track where the leading edge of the virus has already been, not where it is going next. Finally, if the current system worked well, there would be no need for this conversation.
Cynically, I have to say that what I have seen is this: the very people who were demanding more action twenty years ago to get government to do something, still will make demands, but have also staked a turf around testing and do not want to see that go away. I don’t think that there is a real consciousness on the parts of the people working in these systems to do this: I really think it is more a matter of a movement becoming an institution (and perhaps becoming a bit of a racket).
One of my favorite expressions: Insanity is doing the same thing over and over and expecting different results. Other than when applied to computers, this generally holds true. I am not saying that home-based, self-administered testing will solve all the problems. But I do think it can bring about a new level of dialog and passion. That’s what we are venturing into (see www.dontguess-test.com). Join us.

Gays

In this morning's Washington Post, some military folks wrote an editorial about gays in the military - and how they should not be allowed (see http://www.washingtonpost.com/wp-dyn/content/article/2009/04/14/AR2009041402704.html). What is most interesting for me is not so much what these writers adhere to (and the amazing loopholes in their thinking - it's not as if you can tell who's gay by his/her skin color, and it is not uncommon for people to come to grips with their sexual orientation at about the same time they would be in the military); what is most interesting are the comments made by readers. They are a clear example of the desperate need for the art of dialog. I have written before that love and logic will be the means through which our world will come together; both of these are necessary. Unfortunately, we too often start with logic; I think we need to start more with love, and then engage in dialog. (Perhaps one of the internal dialogs could also be that we actually support no gays in the military as a starting point to getting everyone out?)

I also think learning, practicing and engaging in dialog that is led by love is something that those of us who are truly passionate about non-violence and doing what we can to remove the occasions for future violence should start to embrace. Anywhere we turn in the world, it seems that there is an edge of violence in the air, and we can expect more as people become more fearful, and more vulnerable. I know that for many, glbt issues are not at the forefront of people's minds but, as with HIV-prevention, I think that how we can engage in these issues can be good opportunities for practicing how to deal with some of the more difficult issues. The issues are becoming more prominent in the media (two examples: http://www.advocate.com/news_detail_ektid78359.asp, and http://www.washingtonpost.com/wp-dyn/content/article/2009/04/14/AR2009041403455.html), so we may as well get involved.

Progress on Gay Rights

Over the past few months, there has been an enormous amount of movement on the rights of same gender-couples to get married. We all know about California and the voter decision to support Prop 8. There was also, in November, legislation in Florida and Arizona that put various restrictions on same gender families. But then, this week alone, Iowa courts and Vermont legislature made same-gender marriage a reality in those states. The District of Columbia is taking similar action. On a national level, there has been increased discussion about letting civil unions be the rule of the land for all people, and marriages be the acts of churches - a compromise that for many seems to have merit.

At the same time, in Iraq, (see NYTimes article: http://www.nytimes.com/2009/04/08/world/middleeast/08gay.html?_r=1&emc=eta1) there is a backlash in some of the more conservative regions against gay men. As quoted from the article: "Clerics in Sadr City have urged followers to help root out homosexuality in Iraqi society, and the police have begun their own crackdown on gay men. 'Homosexuality is against the law,' said Lt. Muthana Shaad, at a police station in the Karada district, a neighborhood that has become popular with gay men. 'And it’s disgusting.' For the past four months, he said, officers have been engaged in a 'campaign to clean up the streets and get the beggars and homosexuals off them.'”

All progress has elements of violent reactivity. No doubt that there is a rapid change in the expansion of gay rights, but we can expect an increase in reactivity as well, unfortunately. It always seems to be a part of the struggle.

I think it is important that we as Friends and Friend-communities look to see what we can do to support the movement. Paradoxically, I do not think that what we should do is create a litmus test for gay marriage. I just don't think society as a whole is there yet. But I think we can create allies for gay marriage among those whom are not yet there, but who are repulsed by people such as Fred Phelps (see www.godhatesfags.com), and by the attitudes of Lt. Shaad as quoted in the Times. Patience and perseverance will get us there, with a dash of faith. We know that opponents to gay marriage are gearing up, and their tactic is going to be to divide, and let gay marriage be the dividing issue. If we react along these lines, rather than continue to reach across these lines to those who are not at the far extreme but just on other side of the line, we will do more harm than good. To react divisively plays right into the "us vs. them" game. I, for one, will continue to look to expand who the "us" is rather than focus on "them".