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Twenty-Five Years in the Fight Against AIDS: What Have We Learned?

October 2006

Twenty-five years of fighting HIV and AIDS has taught us many hard lessons, and the learning is far from over. We've learned a great deal about the intersection of epidemics of addiction, violence, poverty and disease as well as the many ways in which politics and prejudice affect what is fundamentally a medical problem. So many have paid with their lives for the lessons learned that it is hard to remind ourselves that society is bettered by the experience. One aspect of the medical fight against HIV that should be carefully studied is what we have learned about confronting a new disease and how it might be applied in the future.

An informative contrast can be found between the 1970's "war on cancer" (generally considered a failure) and the 1980's and 1990's war on AIDS (considered one of the great success stories of modern medicine). Why did one fail and the other succeed? Though the answers are complex (and it's clear that AIDS research itself benefited greatly from the prior assault on cancer), important lessons can be drawn about why the AIDS fight has done so much, at least among those with access to care and modern medicine, to reduce the terrible suffering and death rates seen in the early years. How was this achieved? What does it tell us about fighting other illnesses?

The perceived failure of the War on Cancer left many in the scientific community humbled and the government wedded to the belief that "throwing money" at research for a disease doesn't work. Most scientists came to believe that directing research toward specific goals doesn't speed progress; that advances largely come only from serendipity and encouraging scientists to work on whatever interests them. Time and again, we were told that studying yeast cells was as likely to bring an advance against cancer as studying the cancer itself.

The AIDS experience has in many ways shown exactly the opposite. It has shown that large, consistent long-term funding -- directed toward specific objectives and goals in the context of a particular disease -- really can pay off. AIDS activists and supporters in Congress and the last three Administrations successfully secured major increases in funding for the National Institutes of Health (NIH). Some of the largest increases went to supporting research against HIV, allowing the NIH and in particular the National Institute of Allergy and Infectious Diseases (NIAID) to lead a full court press against the disease. Importantly, these funding levels were either increased or sustained with each passing year for nearly two decades -- far longer than support was provided for the War on Cancer.

Leadership within NIAID wisely created a balance of programs that supported basic science about HIV itself, HIV pathogenesis (how HIV causes disease), drug discovery, and clinical testing of new drugs. The funding was spread throughout the country to attract the involvement of our best universities and. The more these groups saw the opportunity for secured long-term funding, working in AIDS became the smart thing to do.

Similar directed funding was used to kick-start the involvement of America's pharmaceutical companies. Federal grants helped identify the basic targets for therapy and supported the screening and testing of new drugs. Within a decade or less, industry had taken the ball and run with it. Smaller and newer firms were seeded with federal grants to do the early work on novel AIDS-related products while the larger companies funded the development of compounds through the costly and time consuming FDA approval process. Today, most HIV drug development is the work of a small cluster of major firms, each heavily invested in developing a full portfolio of products that attack HIV from multiple angles. As treatment has begun to be made more accessible in developing nations, the international generic drug industry has taken on the task to producing less expensive and sometime innovative new versions of existing drugs.

Another key element of the success achieved in treatment has been the unprecedented inclusion of the patient and primary care physician communities into the research process. After years of initial reluctance, patients and their care givers were eventually welcomed into scientific meetings and onto drug company advisory boards. For many years now, every clinical study has been massaged by the patient community, not just institutional review boards and professional groups. This involvement of an aggressive and well informed patient constituency has been widely heralded by scientists and patients alike. Its contrast with the passive community advisory boards of the past couldn't be more stark. Its contribution to progress and understanding cannot be overstated.

Despite the painfully slow start in the Reagan era, steadily increasing funding of AIDS programs at the NIH orchestrated our academic and industrial resources toward achieving long-term goals. Long-term, consistent funding made it possible for academia and private industry to confidently invest in HIV without worrying when or whether the funding would dry up. Opening the doors of academia and private industry to the voices of those affected by the disease has humanized the science and brought it new levels of both support and useful constructive criticism. Collectively, these efforts proved that investing heavily and consistently in the fight against a disease and opening the doors to greater public input does indeed pay off. They showed that science can be guided toward specific goals, albeit with a gentle but wise hand. The key to such wisdom has been to bring all the relevant parties to the table and to continually remind ourselves of the importance of the patients' voices.

These efforts have changed HIV disease from a rapidly progressing, almost always fatal condition to what is today a largely manageable condition, at least for those with access to medical care. In this 25th year of AIDS, we have nearly 25 new drugs that have collectively changed the nature of the disease -- an unprecedented rate of new drug development. When people have access to the medicines and medical care, HIV can be held at bay for decades. Though this is not yet a cure, it is a stunning and welcome advance over the suffering that people faced early in the epidemic.

We have also learned the critical importance of combating drug resistance through patient adherence training and developing a constant stream of newer and better drugs, something neither tried nor accomplished very well in any other disease. Developing newer and better drugs continues to this day with at least four or five important new medications nearing approval over the next two years. With each passing year, HIV becomes more manageable, the drugs safer and easier to use, and the development of resistance ever more distant.

If only we could make as much progress against the social, economic and political obstacles faced by people with HIV worldwide. Drug prices, lack of infrastructure, sanitation and medical care, and the callous indifference to the needs of the poor keep many millions from benefiting from these advances. As long as these obstacles remain, these benefits remain out of reach for far too many. We have also failed miserably in the pursuit of prevention, both nationally and internationally. We would not need to struggle so mightily to find the funds to support treatment for tens of millions of people around the world if we had perhaps invested more effectively in prevention along the way. Conversely, had we succeeded in prevention, the cost of treatment would be greatly reduced since fewer people would need treatment in the first place.

We cannot afford to ignore these important lessons. In addition to bringing the success of HIV treatment to the developing world, these lessons should now be applied to the fight against any number of other major illnesses that have not fared as well at the hands of government and science. In the same developing countries so badly in need of access to HIV treatment, millions more die annually from such diseases a tuberculosis, malaria and hepatitis. We cannot go back to serendipity and lower, inconsistent funding levels. We cannot go on under-funding prevention efforts. A vaccine for HIV still tragically eludes us and the vaccine research effort still seems inadequately funded and lacking in leadership. These challenges are as great and as unmet today as they were in the 1980s. Our very success in treatment research and development points the way toward success in prevention: it requires bold, consistent, long-term funding and worldwide collaboration among patients, physicians, researchers, governments and the general public. That is what it took to change the nature of HIV disease through treatment research, and it is what it will take to stop its spread.

Beyond HIV, we face new threats like the bird flu and other less well known pathogens, plus whatever nature will bring us in the future. Thanks to the efforts of scientists, activists, doctors and nurses, the National Institutes of Health, our universities, private industry and supporters in government, we now know a great deal about fighting HIV and any other new disease. The challenge before us now is to apply those lessons worldwide.

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This article was provided by Project Inform. It is a part of the publication Project Inform Perspective. Visit Project Inform's website to find out more about their activities, publications and services.
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