PEPFAR: An Oral History

How a "Dream Big" Global Health Partnership is Saving the Lives of Millions

In 2001, the HIV/AIDS crisis in Africa had reached new heights. Death tolls were in the tens of millions. Hospitals were overwhelmed. And the infection rates continued to rise. The United States faced a choice: respond to a call for help or watch a generation of lives be lost.

Photos, clockwise from upper left: Peter Mugyeni created a clinic in rural Uganda that became a model for healthcare delivery for PEPFAR (Marco Longari/AFP/Getty Images); the White House decorated with a red ribbon to commemmorate World AIDS Day in 2008; Secretary of State Condoleezza Rice greets the crowd as she arrives at the State House in Dar se Salaam, Tanzania on February 17, 2008 (Jim Watson/AFP/Getty Images); President Bush gives remarks at The AIDS Support Organization Center in Entebbe, Uganda on July 11, 2003.

Fifteen years after the passage of the United States President’s Emergency Plan for AIDS Relief, what was once a death sentence is no longer one in Africa and other developing regions. Thanks to the generosity of the American people's investments in PEPFAR, along with the political will of national leaders and commitment of engaged stakeholders, people with HIV/AIDS are able to live long and hopeful lives. Incredible gains have been made in the fight against HIV/AIDS. Recent estimates place the number of lives saved so far at 17 million.

But challenges remain. 1.8 million people worldwide were newly infected with HIV in 2017; new HIV infections are increasing in young populations; and people living with HIV remain vulnerable to other life-threatening diseases including cervical cancer and tuberculosis1.

When we look back to the situation in the early 2000s — when saying that an entire generation of lives could be lost was no exaggeration — we realize how far we've come. And as importantly, that we need to keep going. In this oral history, compiled from multiple first-person accounts*, we take a look back at the decisions facing U.S. leaders — and how those decisions saved millions of lives.

Accounts include memoirs, speeches, Congressional records, documentaries, conference speaking opportunities, written articles, and government updates from more than 40 speakers. Some quotes are adjusted slightly for clarity and abridged for brevity. Speakers are attributed by their title or role in the global AIDS response.

Posted on: December 1, 2018 / Updated: December 14, 2018

Part I: 2000-2007

2000-2001

A Generation in Peril

In the early 2000s, an estimated 36 million people were living with HIV/AIDS and nearly 22 million lives had been claimed.2 Without proper access to treatment and resources, AIDS was a death sentence. And while those drugs were available in developed countries, few in Africa had any hope of receiving treatment.

Mark Dybul
PEPFAR Architect 

A principal architect of PEPFAR while with the U.S. National Institute of Allergy and Infectious Diseases
U.S. Global AIDS Coordinator (2006-2009)
Executive Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria (2012-2017)
Full bio

"At one point, 75 percent of pregnant women had HIV in Botswana. Most diseases kill the very old and the very young. But this disease was killing the most productive and reproductive parts of society. So not only were many households run by orphans, but entire villages were run by orphans, because everyone [else] was dead."

A mother in Uganda reads a memory book with her children on August 6, 2000. The mother, living with AIDS, created the book for her children. (Louise Gubb/CORBIS SABA/Corbis via Getty Images)

Children orphaned by the AIDS epidemic in Malawi sit in the Tithanizane Orphan Care Center in Ndirane township in Malawi, August 13, 2001. The center acts as a pre-school for 209 orphans that lived within a 1/2 kilometer radius of the town. (Alexander Joe/AFP/Getty Images)

2001-2002

First Steps

On May 11, 2001, President Bush announced action to fight the devastation across the globe by making the first contribution to the Global Fund to Fight AIDS, Malaria, and Tuberculosis. Joined by Nigerian President Olusegun Obsanjo and U.N. Secretary General Kofi Annan, he noted that “the sheer number of those infected and dying is almost beyond comprehension.” AIDS alone had left more than 11 million orphans in sub-Sahara Africa, and in several African countries, as many as half of the 15-year-olds could die of AIDS.

“We have the power to help.”

President Bush welcomes Nigerian President Olusegun Obsanjo and U.N. Secretary General Kofi Annan into the Oval office on Friday, May 11, 2001. (Eric Draper / White Hosue)

A year later, President Bush escalated the fight on HIV/AIDS. On June 19, 2002, he announced a new Mother and Child HIV Prevention Initiative, under The Global Fund to Fight AIDS, Tuberculosis, and Malaria that was intended to treat HIV-infected women with an antiretroviral drug to block transmission of the virus from pregnant or nursing mother to child. By building the healthcare delivery capacity, this new effort was expected to greatly expand the reach of care. As importantly, the administration set a concrete benchmark — as it would do with future investments.

Mark Dybul
PEPFAR Architect  

A principal architect of PEPFAR while with the U.S. National Institute of Allergy and Infectious Diseases
U.S. Global AIDS Coordinator (2006-2009)
Executive Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria (2012-2017)
Full bio

"The world was moving, but moving slowly. People weren’t thinking big. They were thinking a little here, a little there… no one was thinking billions… that we have to really get after this thing. We were thinking $500 million was a lot of money. But the President was thinking something much bigger."

Video: Anthony Fauci recalls the early days of PEPFAR and the Global Fund to Fight AIDS, Tuberculosis, and Malaria in this video by HIV.gov.

President George W. Bush announces a new Mother and Child HIV Prevention Initiative in the Rose Garden on June 19, 2002. Standing by the President from left to right, are Secretary of Treasury Paul O'Neill, Secretary of Health and Human Services Tommy Thompson, and Secretary of State Colin Powell. (White House)

The HIV/AIDS pandemic continued to worsen. By the end of 2002, more than 40 million people were living with HIV and the death toll was rising, leaving more than 14 million children orphaned3. Hospitals throughout sub-Saharan Africa were overwhelmed by the number of people needing help. In the worst-affected countries, life expectancy decreased by 20 years.

To commemmorate the 15th anniversary of PEPFAR, Mark Dybul and Michael Gerson recall their experiences in its development with Barbara Bush and Agnes Binagwaho at The Lazarus Effect at Engage at the Bush Center, presented by Highland Capital Management, on May 9, 2018.

Up to this point, Anthony Fauci and Mark Dybul had worked on clinical trials in Africa to research the feasibility of various approaches of delivering antiretroviral care. Modeled after a clinic in Uganda’s capital created by Peter Mugyenyi and a program in rural Uganda from the AIDS Support Organization, Dybul and Fauci formed the early versions of what would eventually become the foundation of PEPFAR.

Mark Dybul
PEPFAR Architect 

A principal architect of PEPFAR while with the U.S. National Institute of Allergy and Infectious Diseases
U.S. Global AIDS Coordinator (2006-2009)
Executive Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria (2012-2017)
Full bio

“[The trials] showed me that it was possible to treat AIDS both in clinic and through rural outreach.”

Peter Mugyeni, pictured above in 2005 in Kampala, earlier created a clinic in rural Uganda that became a model for healthcare delivery for PEPFAR. (Marco Longari/AFP/Getty Images)

Planning in earnest for an approach that leveraged new developments in antiretrovirals that could prolong the life of AIDS patients began in August of 2002, with Fauci and Dybul making regular visits to the White House to work through details. In November, Josh Bolten asked Fauci and Dybul to provide a panel of experts that had real-world experience in delivering the drugs in developing nations.

This meeting — whose topic was intended to be a surprise to its guests, though Fauci secretly gave them warning — would serve as final litmus test before White House officials made their recommendations to the President.

Paul Farmer with a patient in Haiti. (via Partners in Health)

The movie Bending the Arc takes an in-depth look at Partnes in Health's work in innovative methods of delivering high-quality health care in the fight against HIV/AIDS, following their PEPFAR-inspiring work in Haiti along with their later work in Rwanda. Watch the trailer

In early December, a small team made their recommendations to the President in the Oval Office. After discussion, the President told them he was ready to announce a plan at the State of the Union address in January. The advisory team had moved quickly in part because it had moved quietly, dodging the bureaucracy of the federal government.

A family — both parents HIV-positive — visits Ugandan clinic run by the AIDS Support Organization (TASO) in 2000. TASO would later become a model for PEPFAR. (Louise Gubb/CORBIS SABA/Corbis via Getty Images)

2003

Making the Leap

In 2003, with Dr. Mugyenyi at the side of Mrs. Bush at the State of the Union, the President unveiled the President's Emergency Plan for AIDS Relief (PEPFAR).

In his speech, the President requested $15 billion for combating global HIV/AIDS primarily in fifteen countries, twelve of them in Africa. The plan was designed to prevent seven million new HIV infections, treat at least two million people with life-extending antiretroviral drugs, and provide humane care for 10 million people suffering from AIDS and for children who had lost one or both parents to AIDS.

Mrs. Laura Bush turns to Peter Mugyenyi of Uganda, whose work was instrumental in the development of PEPFAR, during President George W. Bush's State of the Union address at the U.S. Capitol Tuesday, Jan. 28, 2003. (Susan Sterner / White House)

President Bush had announced his plan – but now had to make sure that the American taxpayers and their representatives would be on board as the bill went through the legislative process. Both houses of Congress recognized the urgency of the matter, and the bill received bipartisan support.

Video: The 2003 State of the Union address delivered by President Bush.

President Bush discusses the HIV/AIDS Bill with, from left, Secretary of State Colin Powell, and Senators Joseph Biden, Bill Frist and Richard Lugar in the Oval office May 8, 2003. (Eric Draper / White House)

Senate Majority Leader Bill Frist speaks during a news conference on global AIDS suffering, May 15, 2003 on Capitol Hill in Washington, DC. (Alex Wong/Getty Images)

2003-2007

Turning a Pledge into Action and Results

PEPFAR was signed into law with bipartisan support in May of 2003. America would lead the way in addressing HIV/AIDS with PEPFAR, the largest commitment in the history of any nation for a single disease.

It began by ensuring PEPFAR had the freedom and resources to be effective. By placing PEPFAR within the State Department of the U.S. government, it was ensured both programmatic and budget oversight of the HIV response across multiple implementing agencies including USAID, the Department of Defense, Health and Human Services, and the Food and Drug Administration. Those agencies each had different missions, but PEPFAR was able to harness diplomatic, developmental, and health expertise from across the government.

PEPFAR changed the development paradigm from donor-recipient to the ethic of a partnership; this required strong leadership to move from a fragmented response with various players to the oversight and coordination by a non-implementing entity of multiple budget lines across several implementing agencies.

In support of PEPFAR, President and Mrs. Bush traveled to Africa multiple times during, and since, their time in office and saw the effects of the HIV/AIDS pandemic firsthand – as well as the hope brought through progress.

President George W. Bush, Mrs. Laura Bush, and to the President's right, Ugandan President Yoweri Museveni and Mrs. Museveni sing along with a choir and staff members of The AIDS Support Organization (TASO) Centre in Entebbe, Uganda Friday, July 11, 2003. (Susan Sterner / White House)

Mrs. Laura Bush and her daughter Jenna at the Kagarama Church in Kigali, Rwanda, July 14, 2005. (Krisanne Johnson / White House)

Intended as a medical version of the Marshall Plan after World War II, the intent of PEPFAR was not to simply send money overseas. Key components of PEPFAR were its innovative methods of delivering aid as Fauci and Dybul envisioned it, including its partnerships with the countries involved.

Mark Dybul
PEPFAR Architect  

A principal architect of PEPFAR while with the U.S. National Institute of Allergy and Infectious Diseases
U.S. Global AIDS Coordinator (2006-2009)
Executive Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria (2012-2017)
Full bio

“We were doing work in Africa, we saw people delivering ARVs by motor scooter… we knew it was possible. We knew it was possible to treat. We knew prevention was possible.”

The government health clinic in Nyagasambu, Rwanda, is supported by PEPFAR and caters to 30,000 people living in the surrounding hills. (Shashank Bengali/MCT/MCT via Getty Images)

Marked results were not seen immediately, as predicted by the plan President Bush put forward. Early foundation building such as strategizing, mobilizing manpower, and building infrastructure were necessary first steps.

But by the end of 2005, the numbers started to quickly ramp up: 401,000 individuals were receiving antiretroviral treatment in the 15 focus countries of PEPFAR, leading to 319,950 estimated cumulative years of life added by 2009; 1.7 million individuals were receiving care, including 630,000 orphans and vulnerable children; and 6.6 million individuals received counseling and testing – more than double that of 2004.

The hope in the voices of many HIV/AIDS patients returned – and since PEPFAR relied on local community resources rather than far-away governments, the voices also felt heard and empowered. As a patient in Rehoboth, Namibia, noted, "We are usually invisible here. But we are all being hurt by this disease. Now our ideas are being heard."4

Mrs. Laura Bush visits with representatives from the Mothers to Mothers-To-Be program of South Africa, Monday, March 13, 2006. Mrs. Bush had met with members of the program on her visit to South Africa in July 2005. L to R: Babalwa Mbono, Aunt Manyongo "Kunene" Mosima Tantoh and Gloria Ncanywa. (Kimberlee Hewitt / White House)

President Bush shakes hands with President John Kufuor of Ghana on Wednesday, April 12, 2006. (Kimberlee Hewitt / White House)

Acwola volunteers prepare to distribute food from the U.S. to HIV and TB outpatients on July 4, 2006 in Arua, Uganda. Acwola is a support group of HIV-positive women who participate in HIV prevention and awareness. (Jean-Marc Giboux/Getty Images)

×

Fill out the brief form below for access to the free handbook.