HIV/AIDS: an Anniversary Retrospective

This year marks the 25th anniversary of AIDS. HIV, the virus that causes AIDS and that was unknown to us a scant three decades ago, has shaken the very foundations of our health care system. In the past 25 years, more than half a million people have died of AIDS in the U.S., and a staggering 25 million have died worldwide. Despite all of our efforts, some 40 million individuals are currently living with HIV throughout the world.

It has been a somber anniversary, indeed.

The Story of Rob

In 1989, Rob was diagnosed with HIV. Over the next several years, he tried most of the available antiretrovirals, the class of drugs designed to suppress HIV, but they were not working. By the mid-1990s, he had withered to 113 pounds and was going blind.

Within the same time period, more powerful antiretrovirals, including protease inhibitors, were studied through clinical trials and approved for use. We discovered that, for many people, a combination of three of these powerful drugs could keep HIV and its symptoms at bay.

Rob participated in the clinical trials that were designed for people in whom the earlier waves of drugs were no longer working. And while there was no guarantee of success with participation, the inevitable outcome of not participating was all too well documented. Rob’s early access to these newer drugs through his participation in clinical trials changed his life radically. The medications stopped the onslaught of his HIV infection. As a result, he gained weight, was restored to his pre-AIDS health and vitality, and started planning for the future. He went back to school, became a writer, and is now completing a novel.

What does Rob’s story tell us about the HIV/AIDS pandemic? One important lesson we have learned in facing this global crisis is that research is the cornerstone to our greatest successes so far. At the XVI International Conference on AIDS in Toronto in August 2006, Bill Clinton and Bill Gates dedicated their joint presentation to all researchers and people with HIV/AIDS worldwide who had participated in clinical trials, and they emphasized the need for expanded research efforts. None of the successes that we have seen in treatment and the subsequent reduction in mortality would have been possible without the tireless work and partnership between clinical trial participants and researchers.

Furthermore, Rob’s story illustrates that the most powerful weapon we have at our disposal today and in years to come is effective treatment — the use of antiretroviral drugs, in combinations designed to maximize safety and efficacy, suppress viral replication, and restore immune function. “Antiretroviral treatment has changed HIV from a death sentence to a manageable disease,” Clinton observed at the opening session of the Toronto conference. “With treatment, HIV-positive people can raise their families, return to work, and participate in the lives of their communities.”

Countless men, women, and children here in the U.S. and abroad have had their lives restored through drugs and drug regimens developed and refined in extensive research trials and clinical use. Recent estimates show that in the U.S. alone, more than three million years of human life have already been saved by HIV-related medications and treatments.

Despite this progress, huge challenges remain. First among those challenges is that scientists see no end in sight to the pandemic. Despite a great infusion of energy, resources, and passion over the past 25 years, the development of an HIV vaccine remains elusive.

“The world of research is preparing increasingly for the outcome that there may never be a vaccine,” observed Dr. Calvin Cohen at the Boston-based Community Research Initiative of New England (CRI), an organization dedicated to exploring new drugs, regimens, and treatment strategies through clinical research. “That doesn’t mean that we’ll stop trying. But we have to ask ourselves — what else must we begin to do in case we don’t find a vaccine?”

Another major challenge is finding a way to affordably produce and distribute these life-saving medications, so that all people in need can benefit from them. Tragically, less than one-fifth of all adults and one-tenth of children with HIV worldwide currently have access to antiretroviral drugs.

Local Work on a Global Problem

Here in Massachusetts we are working hard on these challenges. The state is home to four medical schools, some 16 teaching hospitals, and a large network of community health centers, private health maintenance organizations, and physician practices, along with the nation’s first public health department. The state’s HIV/AIDS Bureau, part of the Department of Public Health, has shown a long-standing and consistent commitment to supporting treatment programs, especially those that reach the poor and underserved. They have fostered innovative and effective prevention initiatives and supported collaborations among agencies. The Massachusetts HIV Drug Assistance Program (HDAP), run by CRI in partnership with the HIV/AIDS Bureau, is one of the most forward-thinking and comprehensive AIDS drug assistance programs in the country. As one of the first states to purchase health insurance within HDAP, this Massachusetts program is also one of the nation’s most cost-effective.

In addition to administering HDAP, CRI works to address the challenges of HIV treatment through research. Some of these research trials are developed by the pharmaceutical industry sponsors who make the vital new treatments. Others are designed by the CRI medical team to test innovations, including those that might not be sponsored by traditional industry sources. One example of such research is the FOTO (Five Days On, Two Days Off) study. Developed and designed entirely by CRI’s own researchers, this study explores the effectiveness of state-of-the-art antiretroviral treatment using a weekends-off schedule that provides a brief respite each week from these powerful, lifelong drugs while maintaining viral suppression. Early data suggests that this approach has worked for certain antiretrovirals. Researchers are testing whether this study can improve adherence and reduce side effects and, if effective, demonstrate the impact of the subsequent 29{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} reduction in the cost of these expensive medications. These are all important considerations when examining how to make effective drug treatments less expensive and more accessible to those in developing countries.

Looking Forward

In spite of all our efforts, this disease still rages across the global landscape. HIV/AIDS has outlined in stark relief the magnitude of our most systemic global failures: widespread poverty, enormous gender inequality that leaves women and girls especially vulnerable to HIV infection, lack of health care infrastructure, and food scarcity.

HIV/AIDS has highlighted the tremendous prejudice and inequities based on race, gender, class, and sexual orientation that are deeply entrenched in societies around the world. It has eliminated almost overnight thousands of future years of productivity and potential creative and intellectual contributions of women and men who have died before their prime. It has cost billions of dollars to treat once-rare and persistent infections and related diseases. It has raised mortality rates and lowered life expectancy in many countries, and it has cut a wide swath across a generation of men and women in developing countries in Africa and Asia, leaving behind orphaned children and aging grandparents with few resources to care for them. And the vast majority of the 40 million people living with HIV worldwide do not even know yet that they are infected.

Thus the 25-year mark of HIV/AIDS in our lives provides us with a perfect opportunity to reflect on both what has been accomplished and what remains for us to do.

We must expand our efforts to ensure access to critical research, more effective treatment, and life-saving drugs. We must develop and implement new HIV/AIDS prevention strategies and technologies. These seemingly disparate priorities are actually intimately linked; effective treatment, which lowers viral load, is one method of preventing transmission.

The goal is to keep people alive while we simultaneously make improvements in the vast systemic problems that people with HIV/AIDS and those at great risk face in their daily lives. We must continue to expand our worldview and our commitment to individuals around the world who face enormous challenges of survival.

We must continue to hope. It is hope for a future without HIV/AIDS that drives scientists, activists, advocates, people living with HIV/AIDS, and so many others to continue the search for better prevention and treatment options.

We cannot afford to allow politics, fear, and ignorance to guide us through the next 25 years. Nothing less than the health of the world is at stake.

Julie Marston is executive director, and Craig Wells is the deputy executive director, of the Community Research Initiative.