Bringing Dawn to Night
Many of us with experience battling the AIDS pandemic in the global north are familiar with a story -- perhaps it describes your own experience -- which unfolds something like this: a physician who has been treating patients with HIV/AIDS since its outbreak in the early 1980s is startled by not being able to remember exactly the last time he or she lost a patient to HIV disease; it was years ago. Where once there was nothing to do but hold patients' hands, offering a modicum of support and relief from pain and suffering as so many died, now there is effective treatment, and it has had the result of bringing dawn to night.
Such stories are often used, effectively and justifiably, to illustrate the point that in much of the world, where health systems are not well developed and national economies are weak, the darkness of the night that is HIV/AIDS without antiretroviral therapy (ART) has not lifted. Want of money and privilege keeps essential medicines from those who need them most.
Recent events have conspired to remind us, however, that these stories, for all that they point to a very real problem of unequal access to medicines in general, leave out some of the complexity of the problem.
While HIV/AIDS morbidity and mortality have been greatly reduced in wealthy nations, people in these countries, most often the poor and medically indigent, continue to die of HIV disease. Many more may stave off the grips of AIDS-related death but lack the care and support, and often the state-of-the-art treatment, that would allow them to approximate, if not attain, the greatest possible quality of life available. We have accomplished much, but the shortcomings of "the system" are very real.
It is a system dependent on the priorities of politicians who must increase funding for HIV treatment assistance nearly every year, and whose willingness to do so fluctuates with the strength or weakness of the economy, as well as their relative confidence that this is a perceived priority among their respective constituencies. In this regard, a few visionaries who have taken up this noble call continue to stand against a backdrop of seas of public representatives for whom this plague remains a far lesser concern. It is also a system reliant on pharmaceutical companies that, while a driving force behind development of life-sustaining treatments, must answer to the dictates of market forces. And, it is a system in which privatization of healthcare service delivery and the trumping of patient care by cost concerns has obfuscated the evident moral imperative that no patient in the wealthiest nation should have to go without appropriate care.
This ad hoc response, despite its flaws, has had impressive results and ones for which those in the United States and other wealthier nations should be extremely grateful. But we should ask ourselves the degree to which it is truly effective and, more important, sustainable over the course of the decades to come. I believe that the answer is relevant not only to those of us in the United States -- the country with which I have the greatest personal familiarity -- but for the entire audience of this international publication. We are able to anticipate difficulties associated with ongoing ART in the developing world by looking at challenges that have cropped up in the places where sustaining widely available ART is an issue of the here and now. It is imperative that these lessons be heeded and that planning for ART scale-up in poorer settings addresses the need for novel approaches to sustainable care and treatment.
The increasing costs of ART are beginning to outpace the funding of government programs designed to bring HIV treatment to medically indigent HIV-positive patients in the United States. The AIDS Drug Assistance Program (ADAP), a network of state initiatives that receive a large part of their funding from the national government through the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act, is in disarray, with 13 states closing enrollment to new patients. As of fiscal year 2004, 700 patients find themselves on ADAP eligibility waiting lists, and that number is expected to increase fully ten-fold over the course of this year if a funding increase is not secured. Additionally, we are seeing in some states the explicit exclusion of once-sacred drugs -- specifically the prohibitively expensive antiretroviral enfuvirtide (ENF) -- from state ADAP formularies. Drug rationing is a reality, and general public care and support for those in need has plateaued astride increasing need, particularly among communities of color.
Much of the difficulty that state ADAPs are facing as they strive to provide treatment stems from the high, and, in some cases, increasing costs of antiretroviral (ARV) drugs. We have relied on the patent system to ensure that the market rewards investment in research and development, but this reliance leaves us open (even vulnerable) to the business decisions of companies that must, for their survival and, indeed, the survival of the whole market-based healthcare enterprise, privilege profit above all other pursuits. High prices and seemingly arbitrary price hikes, such as those we have seen recently, are practically built into the system. The need for resources to fuel research and development of new ARV drugs and other forms of therapy remains an ever-present priority as well.
Is there an alternative -- a viable, sustainable method of developing new drugs and making sure they are available to all who need them? I do not profess to have an answer, though I admit that even if a workable counter-paradigm could be drawn up in theory, I do not see how it could be implemented without a devastating intervening period of stagnation. My personal opinion is that market forces and the continuing involvement of the pharmaceutical industry are required. I believe that most industry representatives are our teammates in the same Olympic contest, and if we must change the rules so that they play the game differently we, as officers and servants of the public health, nonetheless want them on our side. For, in healthcare as in other sectors of various, vibrant national economies, innumerable case studies extole the virtues of systems that thrive upon a diversification of public and private responses to causes of public concern, matching the bottom line of market competition with the inherent public interest of public services.
Whatever the eventual solution to our current dilemma, however, solving this puzzle is a priority that must remain near the top of our agenda. Antiretroviral therapy has turned HIV night into the dawn of a new day, where it is available. At the same time, holding off the forces that could carry us speedily to a new dusk is an ongoing struggle for all peoples in all nations.
José M. Zuniga is President/CEO of the International Association of Physicians in AIDS Care, and Editor-in-Chief of the IAPAC Monthly.
This article was provided by International Association of Physicians in AIDS Care. It is a part of the publication IAPAC Monthly.