From the Outside In: An Overview of Four Decades of Progress on HIV/AIDS

The Association of Clinical Research Professionals

New clinical treatments for diseases are conceived in a laboratory, then tested on animals or through simulations, and finally studied on human beings if deemed promising enough. Moving from point to point in this cycle is rarely a straight line, and costly and time-consuming trial-and- error efforts may be the key strategy for pushing a treatment forward.

This methodology is still the case for the majority of clinical research in today’s environment and, traditionally, studies have been designed without direct input from patient populations. This is becoming less common as researchers recognize that excluding patients from the process of creating effective treatments can lead to misinformation regarding new treatments, risks to generalizability, stigma toward those who are sick, and, overall, less effective treatments.{1} The U.S. Food and Drug Administration (FDA) currently mandates the inclusion of patient voices in study development; however, much earlier during the HIV/AIDS crisis, patient advocacy groups had an effective impact on new drug development and disease burden.{2}

The HIV/AIDS crisis in the United States and throughout the world devastated the gay and queer community and changed the world’s perspective on how clinical research is performed. A historical review of those who experienced the crisis from the beginning and what changes resulted from those events can provide valuable information for how the field of clinical research may continue to evolve. This four-decade retrospective will tell the story of how the HIV/AIDS crisis changed the process of how clinical research can be performed and, most importantly, how patients and patient advocates were able to make those changes to the system “from the outside in.” Read more…