In a world where power can corrupt, Dr. Penninah Iutung Amor, a down-to-earth, quick-witted, good-humored woman who is AIDS Healthcare Foundation’s Africa Bureau chief, has always been guided by doing the right thing — especially for her patients.
For the book Righteous Rebels: AIDS Healthcare Foundation’s Crusade to Change the World, I met Dr. Penny, as she’s known, inside her neat, well-organized office at AHF’s Africa Bureau headquarters in Kampala, Uganda — the nation’s pulsing, traffic-clogged capital of more than two million people. Outside, in front of the building’s entrance, stone-faced security guards held machine guns due to the ever-present threat of terrorism.
Even for a non-profit like AHF, work can be risky and dangerous in various parts of the globe; something Amor always had to keep in mind.
At 39 years old, Amor supervised 10 country program directors and hundreds of AHF staff members in 10 African countries — Uganda, Ethiopia, Kenya, Lesotho, Nigeria, Rwanda, Sierra Leone, South Africa, Swaziland, and Zambia. She was also in charge of AHF’s largest bureau with more than 300,000 patients — in the United States, AHF had 41,000 clients.
Amor was undertaking a massive, complex job, and AHF president and co-founder Michael Weinstein trusted her completely, which was easy to understood after talking with her.
We sat at a conference table a few feet away from her desk. She joined AHF, in 2004, as a doctor for one of the organization’s first free HIV treatment clinics outside the U.S., in Masaka, Uganda. Before that, she worked with dying AIDS patients who had no access to life-saving HIV drug therapy.
“It was very depressing,” she told me. “I am a person who in life I don’t like to fail, and at that point, as a doctor, I felt like I was failing these patients because there was nothing more for me that I could do. So the most we could offer at the hospital was hospice care.”
Amor continued, “But you knew that one week you’re treating this patient, and a week later, another one is going to come. Some of them had very severe end-stage of the disease. So then you had to talk to the parents, you had to talk to the relatives. Some of them couldn’t even afford their hospice care. You just had to counsel them, and make sure that they continue to have pain medications, and continue to treat their opportunistic infections, just to make sure they can be okay. So it was very depressing.”
But AHF’s Masaka clinic turned that around, saving tens of thousands of HIV-positive Ugandans with once hard-to-get HIV treatment. Amor deeply invested herself in the work.
“At the end of the day,” she said, “the success of the patients really depends on the patient, more than just the doctor. And if you don’t build that trust and help them, they are going to fail. And then you as a doctor fail. So for me, with HIV care, you are building a bond and going on a journey with the patient.”
Amor added, “A lot of doctors don’t want to do that. Some doctors do find that it is a burden, and they back out. But it is about how you’re relating with the patients. I know sometimes doctors take the patient’s burden and then make it theirs, instead of finding the position where you can empower the patient. In HIV, you have to empower the patient. You can’t just give them something and do nothing for them. You need to empower them and help them.”
It was a notion that never left her, even when facing different kinds of pressures from powerful governments.
“The government sometimes wants you to fund some of their programs,” Amor explained. “You’ll find some [AIDS organizations] do agree to fund government [jobs], but we have never done that. We always felt that it wasn’t the right thing to do. Our model of operation is to reach the patient directly as much as possible, and we wanted the money to go directly to the patient.”
Naturally, Amor said, officials were not always pleased with AHF.
“When it comes to things like training,” she explained, “the government will want you to fund those training activities, and that goes directly into the pockets of the government folks. We have not done that. Sometimes it has been unpopular, and they will favor other organizations over us. But we’ve stayed fine by doing what is right.”
For Amor, despite her hectic, time-consuming schedule, that included finding time to treat longtime patients.
Read more about Dr. Penny and AHF in “Righteous Rebels: AIDS Healthcare Foundation’s Crusade to Change the World.” Now available as an e-book and paperback.