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Story October 6, 2016

Pulitzer Center Launches 'To End AIDS'

Media file: cohen.jpg


Ending AIDS

An on-the-ground look at efforts in Africa and the United States to end the HIV/AIDS epidemic.

Cover designed by Jordan Roth. Image by Misha Friedman. South Africa, 2016.
Cover designed by Jordan Roth. Image by Misha Friedman. South Africa, 2016.

Available free on iTunes, Atavist, and Kindle.

"90-90-90": These numbers were a major subject of discussion among participants at the 21st International AIDS Conference held in July 2016 in Durban, South Africa, who asked how countries could meet the targets set forth by the Joint United Nations Programme on HIV/AIDS. 90 percent of people living with HIV will know their status; 90 percent of those with a diagnosed HIV infection will start on antiretroviral (ARV) drugs; and 90 percent of those receiving antiretroviral treatment will be virally suppressed.

Among the participants at the conference were Pulitzer Center grantees who reported on HIV/AIDS in nine countries in the past year. They have all contributed their stories, photographs, and video to a new e-book published by the Pulitzer Center called "To End AIDS."

Their articles have appeared in Science, BuzzFeed News, Nature, Scientific American, Global Health Now, NPR's Goats and Soda, and The Guardian.

Jon Cohen, a reporter for Science, and photographer T J Maposhere depict a program in the Nyamutora village in Zimbabwe that erases stigma, changes behavior, and saves lives—by ensuring that infected people take their antiretroviral drugs. It's a program that creates a sense of community. It is, Cohen tells us, "simple, cheap and effective."

Together with William Brangham and Jason Kane, Cohen produced a series for PBS NewsHour called "Ending AIDS." These reporters take us to Kenya, South Africa, and Rwanda to look at strategies to end AIDS. They also examine what is happening here in the United States as they look at programs with varying degrees of success in both scope and efficacy in San Francisco, Atlanta and New York state.

Their videos are interspersed throughout the e-book. Also included is a video profile of Diane Havlir, the co-founder of the Getting to Zero campaign in San Francisco and a strong advocate of PrEP or pre-exposure prophylaxis.

PrEP calls for those who are uninfected but vulnerable to take daily antiretroviral drugs to help prevent infection. Amy Maxmen, who writes on science and medical issues, focuses on young women in South Africa who become infected by older men and looks at ways to make PrEP more effective. She reports that the importance of supporting young women socially and economically is not lost on health care providers: "Until I know the context of a woman's life I can't make a difference," says one.

Photographer Misha Friedman created two photo essays—both stunning and alarming. One is on South Africans who have contracted HIV and tuberculosis, and the other on the more than 6,000 people living with HIV in the Donbass region of Ukraine. Their way of life may differ, yet both groups share bleak futures.

Reports by Ana Santos and photographs from Veejay Villafranca show not only the increase of HIV/AIDS in the Philippines since 2009, but the shame associated with it; Santos also talks about those who are making a difference: Filipinos who are "quietly trying to heal the stigma of HIV": A monk who provides condoms, free advice, and shelter to those who are disowned. And a midwife who works in a clinic that provides HIV testing.

Three Pulitzer Center student fellows who have received international reporting grants also contributed to this e-book. Jennifer Stephens from The George Washington University's Milken Institute of Public Health writes about young women in Malawi who were born with HIV—but may not have discovered this until they were in their late teens. They've learned to deal not only with the medical implications but the emotional challenges. Many find comfort and a sense of community in teen clubs, learning "you can live the life you want."

Rebecca Sananes, who now works for Vermont Public Radio and was formerly a Boston University College of Communications student fellow, looks at the role sanitariums played in Cuba. Critics there claim the government quarantine facilities for HIV positive people were like prisons; others say they helped control the epidemic. For one HIV positive resident, an Eduardo Martinez, the sanitarium became a place of refuge—it led to a "second career" as Martinez became Samantha—a cross-gender performer at the Tropicana Club in Havana.

Aditi Kantipuly from the Johns Hopkins Bloomberg School of Public Health writes about the effect of cytomegalovirus retinitis (also called CMV retinitis), the leading cause of more than 90 percent of blindness in HIV patients. She examines stigmatization in India—and the limited access to ARVs and medications for opportunistic infections such as CMV.

In To End AIDS, you will also find an AIDS timeline that stretches from 1981 to the present day, interactive maps (showing the cost of antiretrovirals in various countries), a glossary, recommended resources, graphics, and an interview with Sandra Thurman, the chief strategy officer for the U.S. Global AIDS Coordinator at the State Department. Thurman weighs in on ending AIDS: What can we expect in our lifetime—and beyond? How can we make this happen? Who ultimately is responsible?

To End AIDS was designed by Jordan Roth and produced by the Pulitzer Center. Patrick Reilly and Jane Darby Menton brought the project to life. Editorial and design consultants Kem Knapp Sawyer and Evey Wilson oversaw the project. Also included in the editorial team: Rebecca Kaplan, Education Specialist and Mellon/ACLS Public Fellow; Libby Allen; and John Morrison. The introduction was written by Emily Baumgaertner, Pulitzer Center Health Projects Coordinator.

This e-book will appeal to high school and college students—as well as a general audience. See the Lesson Builder for suggested lesson plans. Educators: click here for a college-level lesson plan designed by the Pulitzer Center education team.

About "To End AIDS":

From Jennifer Beard, Assistant Professor in the Department of Global Health at the Boston University School of Public Health:
"To End AIDS" is a beautiful book. Those of us doing global health research spend too much time talking to one another within our scientific circles, thinking in terms of data, and the next intervention. These are all critical to addressing and, yes, maybe someday ending one of the most complex and transformative pandemics of our time. But our fixation on scientific jargon, methodology, and numbers often blocks out the compelling stories of the effect HIV has had on individuals, communities, and countries. The stories in "To End AIDS" are a wonderful antidote to the scientific obfuscation. Rigorously reported and informed by the science and theories of public health, the stories told here focus on the resilience of those affected by HIV and the critical importance of local context.

At face value, the global response to HIV is also filled with success stories, but the successes shouldn't crowd out information about urgent gaps. Almost half of the people living with the virus have access to life-saving medicines, yet over half of those in need of medicines do not receive them, and one quarter of babies are not protected. And we will never end AIDS if we don't prevent infection in the first place. We are still struggling to reach those who are most vulnerable to infection and most often overlooked: teenage girls involved in sexual relationships with older men, transgender women, men who have sex with men, injection drug users, and the list goes on. We have the knowledge and the tools to help them stay safe. But complicated global policies, funding mechanisms, supply chains, local laws, social norms, poverty, and the many layers of stigma and discrimination still consistently thwart our best efforts. "To End AIDS" inspires but it also warns us that we are nowhere near the end of this difficult journey.

From Scott Campbell, Executive Director, Elton John AIDS Foundation
For the global movement to end the AIDS epidemic to succeed, the challenges we face and the successes we achieve must be communicated to scientists, activists, policy makers, and the general public. One of the most important ways to tell the story of HIV is to portray the lives of people affected by the disease around the world through multimedia journalism. Jon Cohen and his colleagues participating in The Pulitzer Center's To End AIDS are some of the best journalists in the field."

From Dr. Paul Volberding, Director, UCSF AIDS Research Institute and Director of Research, UCSF Global Health Sciences:
"To End AIDS" is a remarkable achievement in reporting that employs a variety of media to inform the public on an ambitious effort to bring the HIV epidemic finally under control. Featuring the work of leading science writers, photojournalists and videographers, and with strategic support from sources including the Pulitzer Center, this e-book and associated materials highlight the global effort to employ potent new anti-retroviral drugs not just for the health of the individual infected with HIV but as a public health intervention. Treating HIV infection now almost uniformly suppresses the growth of the virus to a level that can, almost always, prevent transmission even without barrier protection from condoms. We also now know that some of these same drugs if taken by HIV-uninfected persons can prevent viral acquisition, another vital aspect of a growing global approach aimed at "getting to zero." Zero new infections, AIDS-related deaths and HIV-associated stigma and discrimination.

"To End AIDS" presents a multifaceted description of these efforts to control the epidemic as well as challenges still being encountered. While getting to zero is on target in San Francisco, barriers are still limiting progress in Atlanta. Ambitious community-wide programs in East Africa are following hundreds of thousands and offering universal HIV treatment, while the much more concentrated epidemic in South Africa continues to infect young women who also face all too common sexual violence. Photos of those affected by the epidemic amplify the message in powerful ways including especially sobering scenes of the devastation in Eastern Europe and South Africa. The Pulitzer team brings years of experience to telling this compelling story which is available free of charge as a downloadable e-book. This project is a powerful reminder of how far we've come in facing the HIV/AIDS epidemic but also a reminder of how far we have yet to go. This is highly recommended as an essential resource.

[This blog was updated on January 23, 2017.]



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