KAMPALA, Uganda - A beacon of hope has emerged for the millions of Africans dealing with HIV/AIDS from an unassuming single story clinic, nestled in the hills of this city.
Since its doors were open in 2004, the Infectious Disease Institute (IDI) has been on the forefront of Africa’s response to the pandemic, quietly and methodically conducting scores of clinical trials while treating thousands. IDI and its staff have proved through their outreach and treatments that high-quality care can be given without having to build brick-and-mortar infrastructure in every rural area.
The friends, as the patients there are called, are regaining their foothold in society, living healthier, with their heads held high and some are even heading back to the workplace after being pull from the brink of death.
“When this clinic started in a small room, a HIV clinic was a specter of a lot of depression and sadness, people laying on the floors. Now as you will see it’s a vibrant population,” said Andrew Kambugu, IDI’s head of clinical services.
“People are well, they are going back to work, they are looking for spouses if they’ve lost their loved ones and they are looking to live life again. For me as a young African professional, I think there are fewer places that give more satisfaction,” the doctor added.
IDI’s success in rolling out anti-retroviral therapies (ARVs) while simultaneously conducting high level research work began as dream. American and African academics wondering how to deal with Africa’s AIDS crisis came up with the idea to open up a state-of-the-art regional center of excellence to serve the continent.
Thus, the Academic Alliance for AIDS care and prevention in Africa was born. The Alliance got the Pfizer foundation to donate funds for the building and operational cost for the first few years and IDI opened it’s doors in 2004. It costs $2 million a year to operate.
“When we came here in 2001, it was very clear that we would never be able to accomplish the vision with the physical infrastructure that was here at the time,” said W. Michael Scheld, a medical professor at the University of Virginia who has been involved with IDI since it was an idea. “We had the [nearby] Mulago Clinic, but it was only open a half day at a time. They saw about 100 patients a day and almost no one ever came back because there was nothing to offer.”
Today, thousands are treated, given medication, taught new activities to help them generate income, and most are smiling on any given day you find them at IDI. Indeed the miracle drugs paid for the Global Fund; the President’s Emergency Plan for AIDS Relief (PEPFAR) are partly responsible. But anti-retrovirals (ARVs) were just the beginning.
“Two and a half years ago, we had trouble in the waiting area. It was a very stigmatizing environment. Friends (patients) would come in and hide in the waiting area. Not wanting to be noticed. Some of them would actually cover their heads. There was a lot of stigma in that waiting area,” said Caleb Twijukye, 32, coordinator of IDI’s creativity initiative.
“So we saw a need to start something that would engage those friends and something to fight that stigma. We began by creating communes in those waiting rooms.” With participating in music, games, spiritual healing, and sharing, each patient found a place to feel more vibrant.
“They come in now dance and sing, and they are happy. By the time they get into that doctor’s room, they are already happy and treated. It really works,” Twikujye added.
IDI, at its core is a clinical research facility that holds its own with other such facilities the world over, despite being right in the middle of a relatively poor country in East Africa. Dusty dirt roads lead up to the hills where IDI is yet, its laboratories are only one of three College of American Pathologists(CAP) certified on the continent. Stepping into the sterile environment with its international cadre of medical professionals, it is easy feel like one is in a Western capital. “We’re not here to train Europeans or North Americans to have their African experience,” insists Phillipa Easterbrook, the head of research. Easterbrook is a medical professor who took a leave from Kings College in London to work at IDI.
“We are here to train the next generation of clinicians, teachers, researchers in sub-Saharan Africa." The era of scientific projects emanating from the West with Africa being the receptacle is ending. It will be us in sub-Saharan Africa saying these are the questions we want to ask together. We will write the grants, we will do the programs, we will do the analyses, we will write the papers. And that’s the spirit I’m trying to engender in IDI.”
In just a few years, 27 African nations have sent close to 2,000 medical professionals to be trained in the latest in HIV care. Yet, some trainees have come from Europe and Asia. IDI insists that those it trains go to their home country and train others. They keep regular communications and have staff waiting to take queries about difficult cases.
Taking a short break from one of the intensive month long training sessions, Zambian physician, Patrick Makelele, said he was drawn to IDI by the caliber of clinicians lecturing. “My expectation is to update my skills in ART management, get the latest if there is any and also to learn from the huge experience of Uganda,” he said. “I wanted to know more [see] what is going on, on the ground … realize my gaps.”
Nigerian military physician, Nathan Okeji, said he planned to return to his home facility and turnover how he’d been doing things. “I’m very impressed with what I’m seeing here, I think we are going to bring an entirely new face to HIV management in Nigeria especially among the military,” the doctor said. He said he immediately wants to begin testing infants born of HIV positive mothers at six weeks rather than wait 18 months as he’d been doing. “The standard here is exactly almost what I’ve been seeing going abroad the in the UK or USA. As far as I’m concerned, the USA is now here in Uganda.” He also plans to use an IDI inspired method of shifting medical tasks to competent nurses. “The doctors are doing everything and we are overwhelmed. We are seeing about 40-something patients, daily. You go from your house to the hospital. Then you are fagged out and you go to bed.”
Easterbrook, who has brought a strong focus on epidemiology to all staff and trainees at IDI, insists that Africa is the place to get answers for HIV now. “My role is to really make sure we’ve crossed every ‘t’ and dotted every ‘i’, in having a rigor in our procedures that rival those in North America and Western Europe.”
Yakari Manabe, a doctor from decamped to Kampala to run the labs here, said simply that “IDI has the ability to answer questions that cannot be answered in the states.” The New Jersey doctor added that: “If you want to look at HIV and tuberculosis co-infection and understand better the collision of those two infections and the devastating epidemic that comes from it, it is best done in places like this.”
While IDI serves some 10,000 friends, it has partnered with Kampala clinics and heads out to different clinic sites ach week to treat hundreds of other patients.
“My dream is maybe to see a negative generation. A new, negative, generation,” said Zam Nakawooya, 35, a former teacher now peer counselor at IDI.
IDI is part of my life now,” added Peter Kamlimba, 38. “I can’t relate it to anyplace. This is where I found my life. I’d lost my life and now I’ve gained my life again. I’m strong, I’m healthy, I can do anything.”
For IDI’s board, the goal is to replicate its success across the continent. Already similar centers of excellence are planned for Ethiopia and Nigeria.
This report is supported by the Project for International Health Journalism Fellowship Program as part of the Henry J. Kaiser Family Foundation’s Media Fellowships Program
IDI clinic by the numbers:
Patients/friends being served: Over 10,000 for free.
Clinical trials performed: Over 80
Tests performed yearly: 160,000
African countries trainees have come from: 27
Trainees trained since 2004: 2000.