Following the trail of missing people with AIDS in Africa

From The NY Times:

KISUMU, Kenya — The young woman perched on the edge of the bed in her tiny hut. She was 29 years old, an AIDS widow who supported herself by frying and selling potato fries by the side of the nearby road.

Yes, she acknowledged to Peter Ouma Mchembere, a young counselor from a local H.I.V./AIDS project, she hadn’t returned to the clinic for her antiretroviral medications in more than a year; no, she didn’t plan to come back anytime soon.

She disliked the drugs, she explained: “The first time I started taking them, I was having the feeling that my heart was pounding and I had no strength.” These days, she said, she chose to rely on prayer instead of medicine to give her strength so she could care for her two young children.

“It’s not bad to pray, but getting care is also important, because this is biological,” advised Peter, who works in Kisumu for Family AIDS Care and Education Services, or Faces. The organization is a joint clinical and research program of the Kenya Medical Research Institute and the University of California, San Francisco.

“It’s very painful,” Peter said to me after we left her home. “She has two kids and they’re at a tender age, and if she dies, who’ll take care of them?”

I was in Kisumu, the largest city in western Kenya, as both a journalist and a public health researcher from U.C. Berkeley. This scruffy but lively port of more than 300,000 people on the eastern shore of Lake Victoria is a regional hub for commerce, transient relationships and H.I.V. infection. About 15 percent of the adults in the region are believed to be infected.

At Peter’s clinic, as elsewhere in Africa, patients who have not come for their medications in recent months are considered to have defaulted from treatment. As a “defaulter tracer,” Peter tries to track them down, find out what’s gone wrong and get them back into treatment, if possible.

Epidemiologists refer to such patients as “lost to follow-up,” and their increasing numbers in sub-Saharan Africa are causing concern among providers of H.I.V. and AIDS care. Interruptions in treatment lead to viral strains that are resistant to the cheapest medications, and to higher rates of illness and death.

Several years ago, during the rapid international expansion of H.I.V. drug distribution, researchers reported very high rates of adherence to treatment in sub-Saharan Africa — as high as or higher than in the United States. More recently, however, studies have found that 15 to 40 percent of those who start treatment are lost to follow-up within one to three years. This unsettling trend has emerged at a difficult time; financing for treatment from the United States and other donors is not keeping pace with the rate of new infections, which has generated waiting lists for the lifesaving medications in some parts of Africa.

At Faces, the loss-to-follow-up rate is around 30 percent, according to Dr. Dennis Osiemo, the organization’s technical adviser for care and treatment. In many instances, he said, problems over which patients have little or no control — like lack of child care, distance from a clinic or the high cost of transportation — force them to miss appointments or drop out of treatment. Others, of course, have died.

But recent research from Uganda found that a significant number of patients designated as lost to follow-up were actually receiving care elsewhere. A similar tracking effort is being started at Faces, but efforts to determine the status of lapsed patients are not always successful. “If a patient is outside the catchment area, it’s very hard to trace them,” Dr. Osiemo said.

H.I.V. programs in Africa are experimenting with various strategies to reduce loss to follow-up — offering a two- or three-month supply of medication per clinic visit, delivering drugs directly to patients’ homes and reimbursing them for transportation costs. Faces is exploring modest projects to raise patients’ income and stabilize their lives, like creating a microfinance system to provide water pumps and other agricultural support to help them grow more crops.

While accompanying Peter on his rounds of the district, I discovered that many cases elude easy solutions — the technological, financial or pharmacological fixes that Western-financed programs seek to carry out.

In search of the defaulted clients on Peter’s list, we rode in matatus — the wheezing, overcrowded minivans that provide cheap local transportation — to outlying neighborhoods, past hundreds of ramshackle storefronts bearing names like Blessed Mum Butchery, Canaan General Retail Shop and the Yes We Can Hair Salon. (President Obama’s ancestral village, Kogelo, is an easy drive from here.)

Peter, a tall, lanky man in his early 20s, lost both his parents to AIDS in 2006. He is supporting two younger brothers and a younger sister, all in their teens, and he struggles to pay their school fees so they can continue their education.

“I know what people are going through, so I have the heart to help them,” he said. He spoke slowly, as if contemplating the import of each word, and wore a black and white rubber bracelet inscribed with the word “friendship.”

Peter says he loves being able to reconnect patients with treatment, but his days can also prove fruitless and frustrating.

On this afternoon, one client was a woman who had stopped taking her young H.I.V.-positive grandson to the clinic every month. When we arrived in their neighborhood, Peter asked passers-by if they knew the family. Most said no.

Finally, a young boy stepped forward, led us across muddy paths and rows of shacks, and pointed out their home. No one was there, and it was clear no one had been for some time. A neighbor said they’d left for somewhere else a month before.

Next was a young disabled patient whose mother used to take her to the clinic. When we located the dwelling, we found the young woman, who was 20, sprawled in the dirt. She appeared to be suffering from serious neurological and cognitive problems.

The woman living next door told Peter that one recent morning she woke up to find that the mother — her sister — had disappeared, with no forwarding information. She knew nothing about her niece’s medical condition, she said, as Peter tried to discuss arrangements to get the girl back into treatment.

But that day it was the decision of the young widow to continue praying instead of returning to the clinic that haunted Peter. Her determination to ignore the medical realities underscored the limitations of his efforts.

When the woman insisted that faith would heal her, Peter challenged her gently. “Even at the clinic, people are praying and still getting medication, because H.I.V. is in the body and blood,” he said.

She acknowledged that she’d recently tested positive a second time, but that did not dissuade her. “I’m still hoping to be tested again and be negative,” she said softly.

Peter and I stood up. He knew there was nothing more to say. He wished her well, encouraged her one last time to return. She smiled and shook her head.