Tuberculosis: History and Its Discontents
NOTE: The in-person component of this event is SOLD-OUT and we are no longer accepting registrations. REMINDER -- even with a registration, entrance is not guaranteed. The event will be livestreamed via zoom and you can register for the livestream here.
Background: TB is the leading infectious killer of adults worldwide. In 2021 an estimated 10.6 million people fell ill with TB and it killed 1.6 million. Multidrug-resistant TB (MDR-TB) remains a public health crisis and a health security threat. Although only about 1 in 3 people with drug-resistant TB were treated in 2021, TB is curable and preventable; an estimated 74 million lives were saved through TB diagnosis and treatment between 2000 and 2021, according to the WHO. TB treatment, research and development are profoundly underfunded. Yet, experts estimate that the benefit cost ratio (BCR) for investments in TB care and research is a $46 return for every $1 spent. The authors note that, across a number of specifications tested, “ the BCRs place TB spending as one of the highest returning investments in global health and development.”
Recent events, such as the expiry of the primary patent for bedaquiline, one of only 3 new drugs for TB since the 1970s, have highlighted the underlying structures that impede the fight against TB. Bedaquiline benefited from substantial public funding. Taxpayers have supported the development, study and distribution of bedaquiline at a rate of at least 1.6 x the investment made by the originator. However, that same originator, after benefitting from 20-year patent exclusivity on the drug, chose to “evergreen” its patent in a bid to extend exclusivity. In March in India, TB activists successfully blocked secondary patents. And, in July a large movement called for the bedaquiline patent holder to pledge non-enforcement of secondary patents and withdrawal of pending patents in other low- and middle-income countries. Against this backdrop, the United Nations General Assembly will hold the second high-level meeting on the fight against tuberculosis on 22 September 2023.
Four authors will examine different historical and contemporary dimensions of tuberculosis and set the stage for a renewed push for elimination of TB, and the inequities that sustain it.
Handaa Enkh-Amgalan was raised in Mongolia at a time of social, political, and economic upheaval, educated in Europe and the United States, and as a survivor of tuberculosis, Handaa brings a unique perspective on the toxic yet universal narratives around personal battles. Refusing to be ashamed or silenced, she writes to promote survivor culture, fight stigma, and reclaim her identity along the way. In 2021, Handaa published her debut book - STIGMATIZED: A Mongolian Girl’s Journey from Stigma & Illness to Empowerment to destigmatize tuberculosis. Since then, Handaa has been speaking at international conferences of TB research and advocacy, including at World Health Organization, Stop TB Partnership, and the Global Fund. Her upcoming speech will be at the 78th United Nations high-level meeting on tuberculosis. Handaa earned a Master’s degree from New York University in public policy, and today she works in the global humanitarian sector, specializing in refugee empowerment.
John Green is the award-winning, #1 bestselling author of books including Looking for Alaska, The Fault in Our Stars, Turtles All the Way Down, and The Anthropocene Reviewed. His books have received many accolades, including a Printz Medal, a Printz Honor, and an Edgar Award. With his brother, Hank, John has co-created many online video projects, including Vlogbrothers and the educational channel Crash Course. John has recently become extremely engaged in the fight against TB and the structural inequities that produce and sustain it. He is working on a new project that examines the strong links among TB in history, the human characteristics that society values, and the lived experience of TB’s contemporary victims. He lives with his family in Indianapolis, Indiana.
Vidya Krishnan is an investigative journalist reporting on India’s HIV and TB epidemics for the past two decades, and on COVID19 more recently. Her work has been featured in the New York Times, the Atlantic, and The Caravan magazine, among others. Her awards include a global health journalism fellowship from Oxford University, a global health media scholarship from McGill, and a Neiman Fellowship at Harvard. Her non-fiction debut, Phantom Plague: How Tuberculosis Shaped History, is an autopsy of the global TB policy, centering the perspective of developing nations like India and South Africa. She lives in Goa, India.
Maria Smilios, a New York City native, holds a Master of Arts in religion and literature from Boston University, where she was a Luce Scholar and a Presidential Scholar. While working as a development editor in the Biomedical Sciences, she discovered the story of the Black Angels. Her debut non-fiction book, The Black Angels: The Untold Story of the Nurses Who Helped Cure Tuberculosis celebrates the tenacious Black nurses who were called to work at Sea View TB sanatorium when white nurses quit and who ultimately prevailed under impossible circumstances, showing us how the human spirit and the will to survive can ultimately change the course of history. She has written for The Guardian, American Nurse, The Forward, Narratively, The Rumpus, and DAME Magazine.
Moderator: Carole Mitnick, Professor of Global Health and Social Medicine at Harvard Medical School (HMS) and Senior Associate Researcher at Partners In Health (PIH).
This event will be in-person and also live-streamed. See the eventbrite page below for in-person registration and the zoom registration link here for registering for the live stream. NOTE: Registration for the in-person session is not a guarantee of entry. Seating will be on a first-come, first-served basis.