PastPresentand_Future@20 Years

June of 2001 marked the 20th anniversary of the first official report that a deadly new illness was showing up in young men. All those initially reported were gay men suffering from a previously unseen form of severe immune deficiency. Dr. Michael Gottlieb, an immunologist at the University of California noted five such cases in his practice and reported them to the Centers for Disease Control. In subsequent weeks and months, the illness that was initially known as Gay-Related Immune Deficiency (GRID) and eventually called AIDS began to reveal itself in additional reports, particularly through the discovery of groups of men exhibiting an otherwise rare form of cancer known as Kaposi's sarcoma. Remembering this unhappy occasion is a difficult task at best, one fraught with the risk of hurt feelings, sad memories, or charges of inadequate attention to one or another of the communities affected by the disease. Past, present and future seems like a reasonable perspective for viewing the epidemic, as each has its share of calamities and triumphs and taken together, covers all people with HIV.

The Past

No honest story of AIDS can be told without first recognizing and honoring the generation of people who fought so hard to build the organizations, tools, and the scientific and political support we all but take for granted today as the framework for confronting the epidemic. The gay, lesbian and transgender communities and their heterosexual supporters should forever be acknowledged for their immediate, aggressive and humanitarian response to AIDS. Years before government was ready to accept its rightful role, these communities were caring for the sick, fighting for treatment and research and making remarkable changes in personal and organizational behavior to curb the risk of AIDS. Their efforts and accomplishments are without precedent in modern medical history.

In this issue, Project Inform reprints, as a memorial, the names of the many deceased who have worked with us, either directly or in spirit, since 1985 to better the lives of people with HIV and hasten the end of the epidemic. Most were honored in earlier issues of PI Perspective, but for many, that was a long time ago. We fully recognize that any such list of names will be incomplete and that it may bring renewed sorrow to some. We also believe it will bring joy and honor to others, especially the friends, lovers and families of those we have lost. We wish to say to them: your loved ones are not forgotten, nor will the world ever forget the contributions they made.

Many of those listed worked with Project Inform, either as staff, board or volunteers. Others are activists with whom we had the honor of collaborating. Many left their marks permanently on Project Inform and other organizations. Some are people whose work we respected, even though we didn't have the chance for direct collaboration.

Given the space, we would love to tell each of their stories and what they did. Suffice it to say that they were people who answered the hotline calls, sent out packets of treatment information, performed office duties, demonstrated in the streets, worked without pay at Project Inform, raised money, served on the board, worked with us on activist issues, organized and provoked scientists to think in different ways, fought for sane public policies and learned the science of AIDS and how to deal with drug companies. Above all else, they were people who cared for each other and the communities of people living with HIV who they served.

Today's more recently infected people may not recognize the names, but they should know that without the efforts of these and others who came before them, the nationwide infrastructure of AIDS care, prevention and treatment education would not exist. Whatever weakness and failings exist in the current structures, they do provide structures to build and improve upon. Those who have passed on have left a legacy that can guide us all in the future as the epidemic cuts it way through new groups here and around the world.

If there is a single message from the past 20 years experience, it is the need for personal and community empowerment. Where once empowerment was primarily the domain of gay men with HIV, today it is becoming the domain of women, people of color and all those more recently afflicted by HIV. There are no solutions except the ones we make for ourselves. AIDS treatment, support and care will not be delivered on a platter to anyone. We must demand it as a fundamental human right. We must educate ourselves because only by knowing as much or more than the bureaucracies can we influence government and institutional policies. We must learn enough of the science of AIDS to make wise treatment decisions, rather than putting those choices in the hands of others. We must know the benefits and the limitations of treatment and the systems through which treatment and care are delivered in order to be mobilized to fight for better solutions. And we must better understand the world if we are to help combat the devastation of AIDS in developing countries.

The Present

Nothing better describes the current state of the epidemic than "a job half done." While so much has been accomplished, we still lack the ability to truly save lives. At best, today's treatment and care programs offer a respite in the fight against AIDS, a time in which the virus is not gone but at least beaten into temporary submission. But the price for this, in both dollars and quality of life, is high, too high. It is still too early to know how long people will be able to live with the current drugs. For some, it is but a matter of a few years before drug side effects and viral resistance begin to outweigh the benefits. For others it has been nearly seven years since potent triple-drug therapy became available and shifted the balance in the battle between virus and immune system. The lucky ones are still doing well and experiencing only minor side effects.

It is increasingly clear that most people will not be able to stay on treatment for the rest of their lives. Between cumulative drug resistance, long-term side effects and simple weariness with the demands of the various regimens, it is almost naive to expect people to be able to succeed for periods of 20 to 50 years or more. But that's what it will take to allow people to live a normal life span despite HIV.

Yet even this limited success is not met with equal political success. In several states, people still must wait on long lists before getting access to protease inhibitors and other new potent drugs. Making matters worse, the current Administration is proposing flat funding for the Ryan White Care Act and the AIDS Drug Assistance Program. Since the number of people being served by these programs is increasing, flat funding is in fact reduced funding. Not surprisingly, issues of international access to treatment and care remain almost completely unresolved (see more about this issue in "The Future" in this article).

In theory, better drugs are coming, but their reality seldom equals their pre-FDA approval promises. Even more worrisome is that a variety of economic and social factors are rapidly making HIV/AIDS a less than attractive target for the pharmaceutical industry. AIDS activists may debate the extent of this problem, or its possible causes, but not its reality. Two companies, Pharmacia & Upjohn and Dupont Pharmaceuticals have already sold off their HIV product lines. Several others quietly ended their HIV research projects after protease inhibitors were first approved. Another major firm has narrowed its HIV research program and will only continue with one or two drug candidates already in development, forgoing any investment in new approaches or viral targets. Still others have shifted their interest to vaccine work. More worrisome, from the companies' point of view, is that few of the recently approved drugs have been successful in the market place. Some argue that, despite their improvements over current therapy, new drugs will have a rough time facing off against the 15 better-known drugs already available unless they offer clear-cut advantages.

A number of small companies have AIDS drugs in development, but history has shown us that such companies rarely are able to bring a product to market without entering into a partnership with one of the major companies. The major pharmaceutical firms are now much less inclined to take the financial risks associated with truly new product development, leaving that task instead to smaller start-up companies. At the same time, venture capital has dried up for funding high-risk AIDS drug development at such companies. Even if a small company discovers an important new concept, it must then enter into a licensing agreement with a company large enough to complete the task of development. With fewer such major companies interested in AIDS, new products will increasingly end up in the hands of the same few companies that now have large portfolios of HIV drugs, such as Glaxo SmithKline and Bristol-Myers Squibb.

Thus, the present (and future) situation is that the pipeline of new drugs is relatively empty beyond the next few years, while more and more drugs are becoming concentrated in the hands of fewer companies, a dangerous trend for many reasons. This places even more power over pricing in the hands of the remaining companies and greater dependence upon them for future advances -- a poor negotiating position to be in.

Activism surely has its work cut out for itself.

The Future

For many, the future of AIDS is seen primarily as an issue facing the developing world, particularly such places as Africa, the Caribbean, India, Asia, Central and South America, and in some cases, Eastern Europe. Countries on these continents have varying levels of medical infrastructure to make treatment feasible, and few if any have the economic ability to deliver care and treatment to all who need it. In some African countries, there is great governmental uncertainty and ambivalence about how best to deal with AIDS. After winning great reductions in the price of drugs, as well as the rights to independent production, South Africa still announces on an almost weekly basis that it has no intention of providing anti-HIV drugs to its citizens. It can no longer honestly blame the problem solely on the drug companies. Fortunately, at least some employers have clearer vision than the government and can see the economic ruin that will ensue without treatment. They are thus establishing contractual relations that will allow them to provide treatment to their employees as needed.

There is no single solution to the problem of AIDS in the developing world because "the developing world" is not a single place with uniform needs. Each country presents its own mix of challenges and opportunities. Nonetheless, the work of activists to achieve dramatically discounted drug prices and to permit generic production is a critical place to start. Without this victory, the rest of the debate would be moot, since many of the countries involved spend only a few dollars per person each year on health care. But even at greatly reduced prices, even at the cheapest generic prices, treatment still is not feasible without financial assistance from the developed nations.

Historically, we have also learned that drugs alone do not solve the problem of infectious disease in impoverished nations. Effective treatments for malaria and tuberculosis, for example, have been available at reasonable prices for decades in many countries, yet millions still die annually from these diseases. If we have learned anything from the past, it is that making public health advances in the developing world requires a long-term, worldwide commitment to comprehensive healthcare solutions. Yes, drugs will be needed, but so will supportive care, diagnostics, side effect management, clean water, sanitation and basic nutrition. We can either wring our hands in despair at the overwhelming level of need or we can acknowledge the complexity of the problem and begin collaborating worldwide to take on the challenge.

Unfortunately, the very success of people working on individual parts of the problem sometimes has the effect of setting off conflicts with those working on other parts. Great debates have raged in the last year over whether funding should be spent on treatment, vaccines, prevention or care. Each issue is supported by its own network of non-governmental and academic organizations, many of which are all too quick to feel threatened by attention being given to other parts of the problem.

To date, international AIDS activism has achieved some great successes, particularly in the area of drug pricing and production. But what is still lacking is a place or setting where the various needs can be discussed and addressed in the context of the whole problem. Neither pills, nor words of prevention, nor addressing poverty and malnutrition alone will ever solve the developing world's problems with HIV and AIDS. Somewhere, somehow, all these concerns and interests must all go on the same table and priorities and sequencing must be set.

The "table" of players needed to effectively address AIDS in developing nations must include the United Nations, the heads of the world's richer nations, the governments and NGOs of affected nations, interested and involved activist organizations, international relief agencies and major sources of private funding. Several of these groups have met separately to discuss the problem, but they have yet to all come together at the same time. The heads of African nations, for example, have met to discuss AIDS, as have the leaders of the eight largest economic powers. But they have yet to meet together or on an on-going basis. Until a forum is found to bring all the players together on a routine basis, efforts to solve this problem, perhaps the worst problem in human history, will continue to be spotty and incomplete. No single meeting or conference is sufficient for solving the worlds greatest problem. If world economics warrant the routine gathering of the heads of nations, so too must AIDS. If the world cannot find the resources and compassion needed to come together over this problem, then the future looks dark indeed. It is a test of our maturity as a civilization. So far, we are failing that test.

Yet, however critical such matters may be, it would be wrong to suggest that the future is only about AIDS in developing nations. HIV and AIDS are again on the rise in urban settings in the US, and there is little reason to expect anything to the contrary in Europe, Canada and Australia. Our own prevention and education efforts are no longer sufficient, much like our drugs. If we fail to meet the standard of continual improvement in education, care and research, AIDS will once again gain the upper hand even in the richest of nations.

One major shift in thinking in AIDS research which warrants the support of activists and scientists everywhere is the increasing trend to address HIV as a disease of the immune system, rather than just as a target for anti-HIV drugs. Recent experience may already tell us the limits of anti-HIV therapy are clear: we can almost completely suppress viral replication and it helps a great deal but it cannot eliminate the virus, and it only works with continuous use. Whether people can tolerate continuous lifetime use of powerful antiviral therapy is another story. Some scientists believe that the longer people remain on anti-HIV therapy, the more dependent they become on it for controlling the virus. A more fruitful strategy may be to seek to redirect and strengthen the immune system's response against HIV, while reducing dependence on drugs. This means a shift in thinking that places more emphasis on the immune response. We already see the first stages of this today in research on the use of interleukin-2 (IL-2, Proleukin) and interest in new, more powerful generation of therapeutic vaccines. Yet such interests have the attention of only a small number of researchers, while most remain devoted solely to the pursuit of anti-HIV drugs. Surely, this must change.

Similarly, increasing attention must be given to the pursuit of a truly effective vaccine. Great progress in vaccine funding and research has occurred in recent years and the trend is clearly in the right direction. But many pitfalls may still lie ahead. Most dangerous is the possibility that strong public, political and financial interest in a vaccine may rush a product into use that is neither safe nor very effective. A real vaccine is critically needed, but we must have medical discipline to support one only when the data truly warrant it.

Moreover, we must not forget that treatment and care in developing nations will at best be only as good as what we can offer in the developed world. Currently and for the near future, that is a relatively weak standard, made up of complex treatment regimens that almost certainly fail over time and which demand an excessive cost in terms of side effects. Thus, while taking on the needs of poorer nations, at least some of the energy of activists and political workers must continue to focus on improving treatment, care and prevention in the western nations. We must continue to improve the efficiency of our scientific discovery, our regulatory (FDA) process, and the drug discovery and development efforts of academia and industry. If we fail to first meet these challenges at home, we have little of value to offer developing nations. What good are treatments for Africa and Asia if they ultimately fail those who use them, yet add complexity and toxic side effects to their lives?


Whether our individual focus is on improving AIDS treatment and care at home, improving the equity of access throughout the US, or bringing relief of suffering to developing nations, we are all working on the same thing, fighting for the same goals. In many ways, the hardest work of AIDS activism lies yet ahead of us.

In the spirit of so many who gave their energy in the battles and activism of the 1980s and 1990s, let us all commit to a renewed war on AIDS around the globe in this first decade of the new millennium. Let's hope that day will someday come when someone gets the privilege of writing about the last five cases of AIDS seen on this planet. Such a day will only come if we continue the fight today, each in our own way. For some, this means pushing the frontiers of science to find the cure that will someday surely be found. For others, it means waging war with the tools of public health, honed in previous battles. And for still others, it means confronting the HIV-associated demons of racism, poverty, hunger and social injustice wherever they appear. If we can do all this together, each with respect for the other, surely no disease -- social or biological -- can stand for long.

Back to the Project Inform Perspective August 2001 contents page.