family treatment fund
The Family Treatment Fund:
In Uganda, A Vital Drop in the Bucket
Telling your spouse you are going to take an HIV test is a delicate and difficult task. In Uganda, Elijah led a troupe that used song and dance to persuade their audiences to take the test and suggest ways for them to tell their partners. But by 2003, his wife was dead from AIDS, and his own body was ravaged by it. Elijah faced imminent death, until he was chosen by physicians at the Mbarara University HIV Clinic to become the first recipient of free AIDS medication provided by the Family Treatment Fund.
“Now, he’s absolutely thriving,” beams David Bangsberg, co-founder of the fund. “He’s our program coordinator and only full-time paid employee. He provides strength in his example to individuals living with HIV/AIDS in his rural Ugandan community.” With his song and dance troupe, Elijah is back performing regularly at HIV testing programs and in surrounding villages. Meanwhile, the Family Treatment Fund has gone on to save hundreds more men and women and their families.
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Dr. David Bangsberg with Elijah Musinguzi, the first FTF recipient, and now program coordinator |
In offices overlooking San Francisco’s gritty Tenderloin district, from which Bangsberg directs the Epidemiology and Prevention Interventions Center of San Francisco General Hospital Medical Center, he describes the path that led him ten thousand miles to Uganda. “For the last 15 years, our group has studied the impact of poverty on access and adherence to HIV treatment and how that impact affects treatment outcomes,” explained Bangsberg.
“The process started with the assumption that poor people wouldn’t take their medications, and when they didn’t take their medications, they would get drug-resistant virus and spread it.” Over eight years following 600 homeless, HIV-infected patients, they collected enough data to counter that assumption and show that lack of treatment adherence among poor patients was not the primary cause of HIV drug resistance.
In 2000, Bangsberg was invited to Uganda to collaborate in a pilot study addressing treatment adherence and outcomes among AIDS patients living in severe poverty there. Once the trial was up and running, Bangsberg and his colleagues were overcome by the tragic reality that few patients could afford their own drugs for treatment. Medical care was provided free of charge, but medications were not.
The researchers witnessed firsthand how, without life-saving drugs, families unraveled as parents fought losing battles with AIDS. Unable to work, money for schools fees, then food and housing, disappeared. When parents perished, orphaned children were dispersed among other families or left to fend for themselves. For Bangsberg and his colleagues, generating health outcome data wasn’t enough.
A child with her mother's medication purchased with Family Treatment Fund donations Photo: Bea Ahbeck |
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Reaching out to friends and families, Bangsberg and his co-workers solicited donations and founded the Family Treatment Fund in 2002 with a goal to provide free medication to Ugandans who most needed them. With antiretroviral treatment (ART) costing less than $1 per day, even small donations could keep people alive and families together.
At the outset, the strategy of the fund was to guarantee free medication for five years to individuals selected by local Ugandan clinicians. It was likely, they figured, that within five years, government and multinational, long-term aid programs would be established in Uganda. If those aid programs did not materialize, dependent children would at least have five more years with a parent to grow and become more independent.
The leap of faith paid off. Emergency response organizations including the President’s Emergency Program for AIDS Relief and the Global Fund stepped in to provide funding for treatment, and the Ugandan government established a highly successful free medication program. Yet, to no one’s surprise, potentially serious cracks emerged in these large programs.
With an HIV-infected patient base of ten thousand, and with 300 new HIV patients presenting every week at the Mbarara clinic, waiting periods for qualified patients to receive medication can extend several months. For a seriously ill patient, that delay can be deadly. Small and nimble, the Family Treatment Fund adapted its strategy and began to provide short-term bridges of medication to critically ill, wait-listed patients.
Recently, the cracks have taken the form of funding irregularities that threaten the supply of HIV medication to pharmacies serving the Mbarara University HIV Clinic. The implications are enormous. Citing a recent publication1, Bangsberg explained, “If a pharmacy that is caring for 5000 patients runs out of medication, you can create resistance in that entire population over a very short period of time, beginning in as little as a few days.”
The Family Treatment Fund recently prevented one such impending supply interruption by mounting an emergency outreach campaign to raise cash from loyal supporters whose numbers have grown to nearly six hundred. “The physicians really like having a safety net in terms of drug supply,” commented Bangsberg about their effective response. “There are enormous challenges caring for patients in that setting—the severity of illness, the number of patients—and you shouldn’t have to add worries of whether the pharmacies will have medications in stock.”
Elijah Musinguzi teaching his son how to read Photo: Bea Ahbeck |
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As health outcome data and field experience accumulate, it is becoming ever clearer that the predominant factors affecting the spread of drug-resistant AIDS virus are the logistics of maintaining a consistent drug supply and distribution chain, not the ability and willingness of patients living in poverty to take their medications faithfully. At the August 2006 meeting of the International AIDS Society in Toronto, six years after Bangsberg and his colleagues began their pilot study, Bill Clinton quoted a meta-analysis of their research conducted in sub-Saharan Africa as driving the “final nail into the coffin” of the misconception that poor people in resource-poor countries could not adhere to HIV treatment2.
For Bangsberg, the fruition of long-term research would at last become actionable, informing the policy and actions of large non-governmental organizations (NGOs) as well as governments.
Filling gaps in ART provision would be a sufficient challenge for most small NGOs. But the Family Treatment Fund also casts an eye to the future, a future in which local Ugandan clinicians develop their own solutions and strategies to respond to AIDS, tuberculosis, and malaria. “Who else is in a better position,” asks Bangsberg, “to identify questions, design programs, argue for funding, and come up with both clinical and policy answers than local clinical scientists who have been given a strong academic and leadership training?”
With its Health Scientist Training Program, the Family Treatment Fund attempts to partially reverse at least two kinds of “brain drain” that deplete Ugandan health leadership: The external drain draws Ugandan research clinicians to other countries; the internal drain occurs when local NGOs engage promising clinicians in positions that develop managerial but not leadership capacities. The program is already attracting sponsors and the attention of at least one major foundation.
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The children of Family Treatment Fund recipient Saidat Makopo playing outside Photo: |
In the global war against the AIDS pandemic, Bangsberg admits what the Family Treatment Fund contributes in Uganda is just a drop in the bucket. But their drop is a vital one. The fund is fluid enough to fill new treatment access gaps as they arise, ensuring critically ill patients like Elijah survive to help others. And it is nurturing enough to grow seeds of sustainable change by sponsoring local health science leaders.
To learn more about the Family Treatment Fund, or to make a donation, please visit the FTF website.
Notes:
1 Oyugi, Jessica H; Byakika-Tusiime, Jayne; Ragland, Kathleen; Laeyendecker, Oliver; Mugerwa, Toy; Kityo, Cissy; Mugyenyi, Peter; Quinn, Thomas C; Bangsberg, David R. Treatment interruptions predict resistance in HIV-positive individuals purchasing fixed-dose combination antiretroviral therapy in Kampala, Uganda. AIDS. May 11, 2007;21(8):965-971.
2 Edward J. Mills, PhD, MSc; Jean B. Nachega, MD, MPH; Iain Buchan, MD, FFPH; James Orbinski, MD, MA; Amir Attaran, DPhil, LLB; Sonal Singh, MD; Beth Rachlis, BSc; Ping Wu, MBBS, MSc; Curtis Cooper, MD, MSc; Lehana Thabane, PhD, MSc; Kumanan Wilson, MD, MSc; Gordon H. Guyatt, MD, MSc; David R. Bangsberg, MD, MPH. Adherence to Antiretroviral Therapy in Sub-Saharan Africa and North America: A Meta-analysis. JAMA. 2006;296:679-690.