By guest contributor and TEDMED 2015 speaker Anthony S. Fauci, MD
One of the best things I have done in my career is admit that I was wrong.
In the early days of AIDS – before we had the first effective treatments – I was a complete believer in the tried-and-true research-to-pharmaceutical pipeline. This rigorous process, based on the gold standard scientific and regulatory approach to clinical trials, usually required many years to run its course. However, for people living with HIV infection in the 1980s, that was time they did not have.
In the late 1980s, the frustration of those affected by HIV/AIDS was reaching a breaking point. Their anger about the pace of research to develop HIV treatments was often directed at me, as I oversaw much of the government’s HIV/AIDS research as director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health. I supported what I knew to be an effective research process. However, it was not until I listened to the activists and began to appreciate their concerns by imagining myself in their place, and by inviting them into my office when they demonstrated in protest on the NIH campus that it became clear that something had to change. At that moment, that something had to be me. I ended up working with the activists to develop an unconventional “parallel track” for drug development, one that provided access to experimental drugs for patients in need at the same time that rigorous clinical trials were still ongoing.
Change, especially the type of change that asks us to question the systems on which we have built our careers, can be difficult. It requires us to at least question and sometimes change our beliefs and habits, and step into unfamiliar territory. Embracing flexibility is sometimes more difficult than maintaining the status quo; however, having this mindset can generate novel solutions. In the case of HIV, by changing the research paradigm and engaging HIV activists as partners in the research endeavor, we were able to develop effective HIV drugs faster, ultimately saving millions of lives.
As the HIV/AIDS pandemic has evolved over the last 35 years, being open-minded remains crucial to defeating this disease. We must continually step back, reassess, look at the larger picture, and identify solutions to seemingly intractable challenges.
Today, science has presented a clear opportunity to end the HIV/AIDS pandemic. We now know that everyone infected with HIV should be offered antiretroviral drugs as soon as the diagnosis is made, for their health and to prevent further transmission of the virus. Last year, NIH-funded research provided strong evidence of the advantage of beginning treatment soon after diagnosis rather than waiting until immune system damage occurs. Clinical trials also have demonstrated that HIV treatment benefits not only the infected individual, but also his or her sexual partners, as lowering the level of virus in the body reduces substantially the risk of transmitting it to others.
Together, HIV treatment and other proven prevention interventions – such as pre-exposure prophylaxis, or PrEP, a single daily pill containing two anti-HIV drugs – provide a powerful toolbox for ending the HIV/AIDS pandemic. If the tools we already have for HIV treatment and prevention were widely implemented, and all HIV-infected individuals were identified and placed in stable, effective medical care, and uninfected individuals in high risk situations were provided prevention tools including PrEP where appropriate, more than 90 percent of new HIV infections worldwide could be prevented each year.
Sadly, the rate of new adult HIV infections has held steady at about 2 million per year since 2008, indicating that despite innovation and advances, we are still far short of our goal of ending AIDS as a major global health problem. Although we have the tools and knowledge to accomplish this goal, substantial barriers still stand in our way. Economics, race, gender, stigma and discrimination all play a role in preventing people from accessing prevention tools, getting tested, connecting to care and accessing treatment.
Hard-won scientific advances collide with these barriers, impeding the progress that research can bring. Just as we did in the early days of the AIDS epidemic, we must now step back and reassess. We must ask ourselves how we can think differently about bringing about an end to this pandemic by more effectively scaling up the powerful tools of treatment and prevention that we know can bring HIV/AIDS to heel. As I have learned, questioning and sometimes changing how we do things can be the first step toward getting things right.
In his TEDMED 2015 talk, NIAID Director Anthony S. Fauci, M.D., shares his deeply personal account of how he had to bend certain overly rigid rules of science to fit with the emergent needs of HIV/AIDS patients and activists.