The State of AIDS
"I love my country enough to risk its wrath, by drawing attention to the negative things we don't always want to see."
I've just returned home from trips to L.A. and North Carolina where I was in the room with a bunch of treatment advocates from all over the country. I heard many people echoing what we are experiencing here in Denver and throughout Colorado. Most of you already know that ADAP programs are in trouble all over the country, including Colorado. Medicaid programs are getting slashed from coast to coast, including Colorado. Many states are suffering right now The safety net is crumbling. My question is, does "right now" mean "right now," or "from now on"? Is this is a short-term crisis? I don't think so. While in L.A., I was reading the local version of Westword, it's called The L.A. Weekly. There was an article on President Bush's hypocrisy when it comes to AIDS. They were addressing his international hypocrisy (the Republicans are getting very good at making it look like they care while they screw us royally). Fifteen Billion for the world over five years -- in whose world? (Maybe in some alternate universe?) I think we've learned that we shouldn't necessarily take State of the Union addresses too literally. Between our own conservative State legislature here in Colorado and our nation's Republican-controlled House and Senate, anyone who thinks things are going to improve in this political climate is living in a Disney movie. As long as people who care more about corporate bottom lines are in control of our government, human beings will suffer. The person our President put in charge of the distribution of international funds -- Randall Tobias -- is the former CEO of pharmaceutical giant Eli Lilly & Co. This appointment, with a "wink and a nod" backs up the fear that our government will continue to support policies that protect pharmaceutical patents, rather than supporting foreign policy that allows developing countries to purchase generic drugs. Did you really think buying generic drugs with our money would be part of this administration's world AIDS policy? Also, our President is all but bypassing the UN Global AIDS Fund to which he promised 3 billion dollars, offering up instead $200 million. This allows for the American government's direct funding of programs, which means they can and you know will fund, abstinence-based prevention programs rather than community-based, pro-condom prevention programs.
Our community -- meaning the colorful, diverse HIV community -- in the United States and around the world will not be benefiting in these times. The solutions, in my humble and extremely biased opinion, are to:
Did I mention voting? We wouldn't be in this situation if those who have the right to vote exercised that right. We, as a citizenry, should be ashamed of ourselves. A horrifying low number of Americans vote -- less than 50% of eligible voters. Some sources say as low as 36% nationally; Colorado averages in the mid forties. What kind of exemplary democracy has a populace that doesn't vote? The grand American "democracy," that's what kind. To those who say that America may not be perfect, but it's better than anywhere else, I call bullshit. Where it is better is where 70%, 80%, 90% of eligible voters vote!
If you rely on any Ryan White or other federally funded services such as: education, case management, substance abuse treatment, mental health care, medical care, the AIDS Drug Assistance Program (ADAP), child day care, home health ... you'd better be paying attention. This is a local, State and Federal crisis. The world pandemic is horrific and the consequences of not funding the education and care services that PLWH/A need all over the world will lead to more horror, human loss, and political unrest than this world can afford. Phil Wilson's words on the cover of this issue have never been more salient. Our political leaders and many people around you will argue that dollars given to other countries, take away from AIDS funding in the US. That's a classic conservative argument meant to pit "us," Americans with AIDS against "them," non-Americans with AIDS. How about we pit tax cuts against services for people with AIDS; war spending against services for people with AIDS; multi-billion dollar corporations against services for people with AIDS. Not people with AIDS against services for people with AIDS. And while we're at it, we need to admit the truth. We are the richest country in the world and yet we seem to be slipping into a "second world" position when it comes to basic quality of life issues: access to health care and affordable housing to name a couple. As you will read in the press release from the Colorado Department of Public Health (on page 6, see PDF), our State ADAP program is in trouble. It is currently capped, meaning that if you're not currently getting ADAP meds and you need them, you're on a waiting list. Got 25 T-cells and need to start therapy? Make sure you have a medical staff (doctor, office manager ...) willing to fill out and push for independent drug company patient assistance programs. Need opportunistic infection treatment? ADAP isn't going to be able to provide it to you anymore. Access to HIV meds is no longer a given -- not here in Colorado, nor in many other states. Do you want to be at a friend's memorial service who died because he couldn't get meds? I sure as hell don't.
Aside from the ADAP crisis and the Medicaid crisis, we've got other crises here in the Mile High City, the Rocky Mountain State and the good 'ole USA. Nonprofits, in general, and small grass-roots nonprofits especially, are suffering in this poor economy. Resolute's publication schedule (yes the last issue really was the Winter 2002) is a perfect example of the general funding crisis across the nation. Funding sources are shrinking or disappearing altogether from the private sector as well as the public.
Speaking of the public sector -- what's up with that local Ryan White process of ours? Many of the services you rely on in Denver have a funding base that is supported by Ryan White CARE Act Title I dollars. For funding year 2003, PWACC's Peer Advocacy Project took a $60,000 or 38% hit in Ryan White funding -- this was due to local politics and the effective pushing us out of applying for Minority AIDS Initiative monies. This, for a program that served over 200 people in 2002 -- people who were falling through the cracks. Fifty percent were Latino, 25% African American and 25% White. Yet we can't access client advocacy funding specifically set aside for communities of color because the readership of Resolute is over 50% White. And, FY 2003 is the final year of Ryan White funding for education/risk reduction and child day care services. Why? Because the education/risk reduction service category, along with child day care were eliminated. Why? Well according to those who were in the decision-making room, there are, evidently, plenty of other funding sources for these service categories. Isn't the whole point of the CARE Act to assure a safety net for those living with HIV? We're eliminating education funds while our infection rates are rising and those being diagnosed have more and more complicated lives. We're eliminating child day care funds while State and Federal funding of Social Services (like Head Start and day care funding) are shriveling up and day care centers for those living in poverty are going under.
Many people in our community and around the country feel that when AIDS Service Organizations accept pharmaceutical funding, their services become biased. In our experience, it has been the community politics surrounding Ryan White funding that biases services. If you're afraid of losing $60,000 because you pissed someone off, it's a lot more limiting than Industry dollars. We have been silenced by community politics, not Industry money.
Breaking that silence I must ask: how did Child Day Care monies get killed???? Who decided that the parents in our community no longer needed those services? The Denver HIV Resources Planning Council did at their annual Planning Council Retreat. The current Council mantra is "these are tough times that require tough decisions." We all know that. Those of you who are homeless or can't access meds or have to trek around to your appointments on public transportation, with your kids, then have to try and listen to your doc with your kids in the room, know it better than the rest of us. I have also been assured by people in the room that there was a serious, but lively and engaged discussion concerning these difficult choices. Something had to go. The problem is that after that discussion, which only included Council members, there was an anonymous written ballot used to make the decisions. Some service categories were represented and others were not; some communities were represented and others were not. Everyone voted no matter their declared conflict of interests. There is no public input at the retreat, in fact, only Council members are invited. It is not an open public meeting. Not voting by voice or hand further reduces accountability in that there is no individual Council member's voting record available.
When first approved, one unique thing about the Ryan White Care Act was that it was federal funding that gave decision-making power to local communities. This is a good thing, unless there is too little money allocated to the legislation in combination with too much latitude in how processes are carried out. To give the Council credit, they are trying to figure out how to deal with conflict of interest. But the focus has been placed on the summer time Resource Allocation process that is open and public and accountable. So I have to ask, is it really fairer to make these decisions locally? I'm not so sure any more. By trying to write legislation that gives power to communities, Congress has actually created local strife. If we had clear rules of participation and voting procedures across the country, for all Ryan White processes, then it would at least be local decision-making with equity in application. There is a lot going on locally right now. Who may participate in the summer allocations process and who may not is currently being discussed. Term limits on Planning Council terms have been implemented, but individual council member terms are of differing lengths. Personally, I think service limits are good, but shouldn't they be time-based, not term-based? Or, shouldn't a term always be the same length? As I said, there's a lot going on in our local community. If you want to be a part of how the future of the Ryan White CARE Act and our AIDS service continuum of care continues to reshape itself, I suggest you start showing up at Planning Council meetings. Participate. Vote.
What really defines a democracy is the number and volume of dissenting voices that are allowed to be heard. If you disagree with this editorial write a letter to the editor. We'll print it. This publication will continue to speak its truth for as long as we manage to publish -- with or without Ryan White funding. Think I'm a hypocrite for criticizing President Bush's pro-Pharma policies while we (openly) accept pharmaceutical money? You're probably right. Capitalism often demands hypocrisy to survive.
When I was an idealistic Marxist anthropology student, I was prepared to turn down fellowships if they were funded by The World Bank, because it was a puppet of the imperialist, capitalist machine. I would dream of the day that capitalism collapsed and an economic revolution took place. Well, now I'm just a practical middle-aged socialist. I still believe that capitalism is inherently and necessarily exploitative. I still believe that social democracy is the most humane, compassionate government model that we know can work. But the collapse of capitalism, I'm afraid is a few decades off (OK, I'm still an idealist at heart). And realistically, I can sleep OK at night as long as I don't start providing biased services. But I am worried. Worried that many of us are just plain tired. I know that I am and I know that many people across this town, this country and this world are. Tired of not being sure if we can raise the money necessary to keep our organizations alive so that we may continue to provide the services that people need -- to fight disease and historically entrenched social ills and ignorance. I'm tired of the local politics and personal back-stabbing that seem to have emerged in our community as soon as people started to live. Some of you reading this have been in the fight for over 20 years, have survived HIV disease for over 20 years. I know you're tired too. It is an unfortunate irony that the miracle of antiretroviral therapy has ultimately led to an emotionally unhealthy AIDS service-providing community. We are all a part of an amazing community, with a unique history. We are now at a critical moment in how we will be viewed by the future. Borrowing from Phil Wilson's words I ask you, are we being cowards? Are we being monsters? Are we passing on our knowledge and mentoring a new generation of activists, advocates and care providers? Do we participate in the world -- not only the world of AIDS, but the world of human rights, women's rights, Gay rights, and civil rights? What happened to the fight for universal health care in this country? We wouldn't need the Ryan White CARE Act if everyone had access to health care. If you're passionate and want to share in stewarding our services into the future, we need you. We need to replenish the ranks; pass the torch; assure the future.
When I was just starting out in this work, when my friend Kevan had just died, I asked a friend what I could do. He said something so simple and true. He said, "just keep showing up." So, if you want things to be different; if you consider yourself a citizen of a country and a participatory member of the human race and you want things to be better in the future -- vote and do what you can to help others vote. Scream and scream loud. Demand democracy. Demand a place at the table. Demand justice. And show up, in what ever way you can.
Shelley Cohen McKittrick is the Editor of Resolute and the Director of Treatment Education at the PWA Coalition Colorado. She may be reached at 303.329.9379 or firstname.lastname@example.org.
This article was provided by PWA Coalition Colorado. It is a part of the publication Resolute!.