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.