A Social Epidemic from a Medical Perspective: The Work of Joep Lange

August 20, 2014 in inQueery

planeOn July 17th, Malaysian Airlines Flight 17 was shot down over Ukraine, with all passengers and crew on board killed. Among these passengers was Joep Lange, who was not only a prominent Dutch HIV/AIDS researcher in the medical field but also an advocate and activist for accessible treatment. Lange, who was 59, was on his way to the International AIDS Society biennial meeting in Melbourne. Given Lange’s untimely death it would do well to remember and acknowledge not only his achievements in medical research but also take note and inspiration from his social advocacy in the tumultuous history of HIV/AIDS research.

Lange was involved in HIV/AIDS research for 30 years not only as a medical researcher but also an activist for accessible treatment. The access of HIV/AIDS medication historically is highly controversial, especially as outrageous pricing often made medication highly inaccessible by those in need of treatment. Following the first official approval of the antiretroviral AZT by the FDA in 1987, it was at the time the most expensive single medication at an estimated $8,000 a year per person in history up to that point as pharmaceutical companies took advantage to make a profit in the midst of panic. Lange’s approach confronted the issue of accessibility as he aided in the development of treatment as prevention. Ultimately, as a medical researcher he believed that care and research should not be estranged from the actual patients who would be affected.

Thanks to considerable gains in medical research, the public’s initial panic of the HIV/AIDS epidemic has lessened due to new drug treatments. However, despite the popular belief in our social consciousness that the disease is now a manageable condition, stigmatization continues to persist around the globe. The history of the disease was at first steeped in social prejudices, an “epidemic of signification” in which HIV/AIDS was not only considered a death sentence but associated with deviance from societal norms. During the early years it went so far as to carry labels such as the 4 H’s of homosexuals, Haitians, hemophiliacs, and heroin users and researchers biased by stigma went so far as to label the disease as GRID or Gay-Related Immune Deficiency. Such assumptions in the medical field not only harmed the affected by reaffirming the social stigma. More harm came from biased research as anyone who did not fit the stereotypical mold was excluded from attention. Take for example, the belief the women and those who did not engage in the typical “risk associated behaviors” were immune from transmission. While medically such theories have been disproven, the panic of the media in the early days of the epidemic are still present in the minds of the public and the stigma of HIV/AIDS can continue to result in serious social consequences not only in the United States but around the globe. HIV/AIDS continues to be a growing problem globally as it is estimated that there are 35.3 million people around the world living with the disease.

In the context of the history of HIV/AIDS research not only as a medical epidemic but also a social one, Lange approached research by considering both faces of the epidemic. This mindset is prevalent in medical anthropology as activists and researchers recognize that in order to combat an epidemic, treatment must begin at the source of the problem rather than bandaging the consequences. As the president of the International AIDS society from 2002 and 2004, Lange attempted not only to approach the problem medically but also from a social perspective, integrating government policies, pharmaceutical companies, NGOs, and health insurers to provide more accessible care. Lange’s background in HIV/AIDS research began in conducting medical trials, with accomplishments such as the development of nevirapine to reduce the risk of mother-to-child transmission but eventually much of his focus shifted on bringing accessible treatment to those living in developing regions such as Sub Saharan Africa, where 69% of all HIV/AIDS cases are located and stigma combined with high cost can prevent the ill from seeking treatment. Lange believed that treatment should be provided to those living with HIV/AIDS “no matter how they became affected” and founded the organization PharmAccess in 2001 with the goal of providing accessible and affordable healthcare for those living with HIV/AIDS in Africa. Lange had the mentality that if we are able to deliver Coca-Cola to these regions of Africa then it must be possible to do the same with HIV/AIDS medication.

It’s been 33 years since the initial CDC report of HIV/AIDS and since that time countless lives have been shaped by the epidemic. Millions of people today around the globe continue to be affected by the disease, not only biologically but also socially. Through the initial panic, terror, and fear, HIV/AIDS became and continues to be a stigmatizing disease in the face of inequality. However, in the same 33 years progress has also been made, both medically and socially, sometimes with the best results coming out of the combination of the two. Joep Lange’s approach did just that and in his untimely passing we ought to remember his advocacy and accomplishments in access to treatment and to take inspiration and action into our own hands. Fear and sickness must be overcome with the knowledge that defeating the disease cannot be made solely through medical advancements but also the social, as what good is it if we have all the medication in the world but those who need it most cannot access it?

Meredith Tsang is a Guest Contributor and a volunteer at the Pacific Center.