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How HIV/AIDS Activism Shaped Nepal, Changed the World

In 2008, shortly after arriving in Achham, in the far west of Nepal, I met a woman with advanced AIDS. She would die shortly thereafter of fulminant pneumonia. Her death was over a decade after highly active antiretroviral therapy came out, a scientific achievement made possible by a social movement that mobilized resources for HIV/AIDS.

Social movements rarely move fast enough, especially in a landlocked, impoverished place emerging from a civil war, and her death was a humbling reminder.

Last week, Congress reauthorized, by a bipartisan consensus, funding for both the President’s Emergency Plan for AIDS Relief (PEPFAR), a testament to the staying power of the HIV/AIDS social movement that, even in such polarizing times, with a White House skeptical about foreign assistance and the government’s role in public health, Congress would act with such moral clarity.

The global HIV/AIDS social movement had a profound impact on my generation of medical students. In my freshman year of medical school in 2002, Randy Shilt’s And the Band Played On was as foundational a text as Frank Netter’s magisterial Atlas of Human Anatomy or Boron and Boulpaep’s epic Medical Physiology. These words shaped everything I know about treating patients.

Shilt would die of HIV/AIDS seven years after the publication of his book. He, like so many other artists, taught me what I didn’t learn in a classroom: how to respond to tragedy, pain, and suffering.

In the United States, medicine has been defined by the cultural and organizational norms of white men, reflective of who, historically, had privilege to serve as physicians. HIV/AIDS social movements pushed at those historical roots. Concepts like global health, patient centeredness, adherence, implicit bias, LGBTQI care, social justice, and human rights are now at least familiar to medical students. These activists taught us radical love that transcended simple categories.

On this 30th World AIDS Day, the 10th year since Possible (with local NGO Nyaya Health Nepal) started delivering care in Achham, so much has changed, yet structural barriers, biases, and economics continue to conspire to lead to preventable deaths.

Over 40 million people around the world have died of HIV/AIDS. As of 2018, there were approximately 1 million deaths due to the now-highly-treatable disease.

In Bayalpata Hospital in Achham, where we have worked over the past decade, the day is observed with an early morning gathering. Staff gather in circle, light candles and retell the motivation that led us to this work more than ten years ago.

Bayalpata Hospital has been the largest and highest quality of HIV care in the far west, and one of the first to implement CD4 counting. This program, including all medications, is exclusively funded by the government, and one example where the government has championed both policy and practice.

Treating HIV/AIDS was our first example of longitudinal care delivery, and provided a path toward building a truly integrated health system. It helped us consider the broader social aspects of health, and the role of communities in improving health outcomes.

Today, I remember the genius of tactivists who changed the world, eventually influencing even the most remote corners, as they faced death and mourned the loss of family and friends.

Duncan Maru, MD, PhD, is co-founder and CEO of Possible.

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