Project Inform - September, 1997

Sadly, the political thinking of AIDS activism has not yet undergone a similar, but equally necessary revolution. Today’s debates, both federally and locally, focus on how to refine and expand existing care, prevention, and treatment support programs on a year by year basis. Each year, a new round of battles begin with the Administration, Congress and State legislatures as advocates seek to find additional funding for the AIDS Drug Assistance Program (ADAP – the program which pays for drugs for people who fall between the cracks of private insurance, managed health care and Medicaid). Skirmishes flare up between the various groups funded by the Ryan White Care Act, often pitting individual patients, support services and agencies and prevention activities against each other in an ugly fight over increasingly inadequate resources. Each budget year brings a new and increasingly critical debate about the adequacy of funding for Medicaid and how the funds are distributed by the states. Similarly, battle-weary treatment activists continue to launch drug-by-drug, company-by-company struggles over the makeup of patient assistance programs, drug prices and expanded access programs.

While all these battles are sincerely waged in the interests of people with AIDS, all of them miss the point. All are doomed to long-term political failure. The complex plethora of services and support mechanisms created in the name of AIDS is heading for near certain future disaster if we continue to engage in the short-term thinking which presently dominates the debate. Historically, most these programs have been modeled after one form or another of "disaster relief" efforts, the kind of quick-fix mechanisms applied to clean up after hurricanes, floods and earthquakes. A fundamental characteristic of such programs is that they have a beginning, a middle and an end. Another characteristic is that they exist at the political whim of whoever is in power. When Congress tires of dolling out billions of dollars in a particularly disaster-prone year, it can simply say there is no money left and let the next group of hurricane or flood victims fend for themselves. This is not an effective model for what is likely to be an increasingly predictable, decades-long fight against a killer disease.

With each passing year, it’s increasingly unclear whether the patchwork of AIDS funding can be sustained for another year. Consider, for example, the fact that the President’s recent budget agreement with Congress has quietly and without fanfare eliminated AIDS, as well as the National Institutes of Health, from the list of domestic spending priorities. What is this telling us? How should we expect the public react to the endless stream of overstatement about the recent success of AIDS treatment? How much longer can special programs be maintained for AIDS which are not available for people with other devastating life-threatening illnesses?

Ask any seasoned AIDS activists, lobbyists or support people what they are working on these days and the answer will almost always be some immediate crisis or problem. All of our present support programs have been created to resolve a short-term crisis – a shortage of funding, the sudden unexpected availability of a new drug or diagnostic tool, an obvious unmet service need. But all the mechanisms we have created are little more than a complex series of Band-Aids, not real solutions to the underlying problem. Everything has been created to address fundamental gaps in the American health care and welfare systems. How long can a seriously ill patient live on Band-Aids? Not much longer at all. For a quick test of this question, ask any of the people presently fighting to shore up the ADAP program: do you plan to keep doing this yearly for the next 30 or 40 years? Or ask the same question of people fighting to support any Ryan White funded program: do you expect to succeed getting refunded from the next 30 or 40 Congresses? The next 10 administrations? Of course not! Few people even relish the prospects of success next year, let alone next decade.

Another rapidly growing threat is the very success of such programs. Nothing like them has ever existed for people with other life-threatening illnesses, and the public has begun to notice this. For the first time, advocates for other disease-interest groups have begun to rise up and challenge various aspects of AIDS funding in the Congress. We may have a lot of arguments why such comparison are inappropriate or unfair, but the sheer numbers do not favor the long-term success of the political view that AIDS is special and deserves special treatment. The problems faced by people with AIDS, while substantial and severe, are not totally unique. The same inequities and failures of the profit-driven health care system affect millions of people facing other life-threatening illnesses for which no special programs exist. They are beginning to ask, "Where are the Ryan White Care Act primary care programs for cancer? The "ADAP" supplemental funding for heart disease or multiple sclerosis? There are plenty of people with other life threatening illnesses who look with great envy upon the framework of support services offered for people with AIDS. Sooner or later, we must accept the fact that it is not unfair for them to ask for equal treatment from government, whether or not their advocates are as well-organized and persuasive as those for AIDS.

In short, unless there are sweeping changes, we are heading toward a future in which there will be no such thing as an ADAP program, a Ryan White Care Act or any other kind of special medical or social support program for AIDS. Such programs will not and cannot be sustained by sheer political will for decades on end. At the risk of causing utter hysteria among our fellow AIDS activists, perhaps it really is time that we ourselves start talking about shutting down such programs as ADAP, patient assistance programs, and Ryan White-funded health care services. Whether we like it or not, all such programs are going to wind up on the chopping block over the next several years.

It is time for us to end our reliance on short-term solutions and to get focused on the true solution – repairing or replacing the American health care system. The United States remains the only wealthy "first world" country with a third world health care system for tens of millions of its people. The needs of people with AIDS should be routinely and automatically met by a fair and balanced national health care system. No such system is in sight, and no one even seems willing to talk about it, let alone work on it. All discussion ended with the demise of the efforts made by Hilary Clinton in the early years of the first Clinton administration. Whatever one’s feelings about the methods or proposals put forward at that time, at least the debate was in the national spotlight where it belongs.

It takes only a little honest introspection to realize the degree to which we as AIDS advocates and our communities may have been diverted, if not "bought off" by the special programs and funding erected in response to our crisis-driven advocacy. While such programs may meet the individual needs of people in crisis, they do not solve the underlying problems that made AIDS such a crisis in the health care system. AIDS put the deficiencies of the system in the spotlight. But instead of fixing the system, we ended up settling for a literal side-show of programs, while leaving the system as deficient as ever. We may have gotten the basics of what was needed for some people with AIDS, but lost the opportunity to solve the problems on a larger scale. Today, we continue taking this short-term view and no longer are making national health care reform a major goal. We took our money and our jobs and we dropped out of the national debate. In the early days of the Clinton administration, most of our major AIDS service organizations were active players in the effort for health care reform. Today, no one mentions the issue, while we go about fighting for our annual program allowances. The communities affected by AIDS should be playing a leading role in the fight for healthcare reform because no other disease interest group is as well organized or politically savvy. But like Hilary and the Clinton administration, we folded up and went away when the powerful forces of the insurance industry, factions of the medical establishment, the pharmaceutical industry and other corporate interests banded together to mislead the public about the implications of national health care. We gave up when an incredible bill of false goods was effectively sold to the American people.

In future months when the competition for dollars heats up with other disease interest groups, we need to avoid going to war against them and instead invite them to join together with us in a massive coalition to reform the health care system. We must learn to be as concerned with the needs of their constituents as we are with our own. It is the only way we will achieve a lasting solution.

Make no mistake about it. The problems faced by people with AIDS should and must eventually be "mainstreamed" into the health care system. There is no other way to address these problems for the long haul. Such a transition will not be painless, however, since it almost guarantees that not all of our agencies, jobs, and buildings will survive. But that’s not what matters – it never did. The outcome will ultimately be good for people with AIDS, and it will be good for the American public as we take what has been learned in the fight against AIDS and make it applicable to all life-threatening illnesses. Obviously, we must continue to meet the immediate needs of our constituents with existing, short term solutions. We must also begin to devote a significant portion of our political energy to developing the long-term strategies for dealing with AIDS as an expensive, life-long chronic illness that may soon be fully manageable but perhaps not ultimately curable. We need to make sure that we take responsibility ourselves for engineering a graduated sunset on such programs as ADAP and Ryan White-funded health care and not leave it up to the whims of our political enemies. This time, we need to create solutions which can last a lifetime and which don’t leave people with AIDS forever sitting on the fragile political limb of special, annually renewed programs and services.

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The original of this article can be found at http://www.projinf.org/pub/22/Sunset.html