Spreading the burden

A new experiment is being tried in rural Mozambique to deliver crucial medicines to AIDS patients.

Rogerio Bernardo slung a black satchel over his shoulder and waited by the roadside in the morning mist for a bush taxi. In dusty wingtips, frayed pants and a gray pinstripe suit coat so big it swallowed his slender frame, he looked like any peasant farmer dressed up for a trip to town.

In fact, Bernardo, who has AIDS, is in the vanguard of a promising new effort to reverse one of the most worrisome trends in treating the disease: the growing number of patients across Africa who fail to collect their lifesaving antiretroviral medicines.

The simple solution devised by Tom Decroo, a Belgian physician working here in Tete Province for the aid group Doctors Without Borders, was to organise patients into groups of six. They would then take turns making the monthly trip to pick up refills, cutting the number of times each had to go to town — to just two a year, from 12.

A two-year test of his brainstorm here in Tete, comparing about 300 of these groups with patients who continued going alone, found that almost none of those in the groups stopped taking their medicines and only 2 per cent died, according to results published in The Journal of Acquired Immune Deficiency Syndromes. By contrast, 20 per cent of the other patients quit treatment or died.

“No one abandons treatment in the group,” said Inocencio Alface, a talkative, slightly built farmer who has become Nkondedzi’s champion for people with AIDS and leads one of the village’s four patient groups. “We give each other courage.”

On a recent morning, it was Bernardo’s turn to go to town. Before he joined the group, if he was short of cash for taxi fare he needed to hike four hours through the bush to the district hospital in Zobue.

But as his group huddled against the chill, each member contributed 15 meticais, or about 50 cents, for taxi fare. They also counted out their leftover pills and noted the tally on their medical cards, so a clinician could tell whether they had taken the previous month’s pills. Bernardo tucked the cards into his satchel.

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As he watched the express taxi go by, waiting for a slower one to save 35 cents on the fare, village life floated past him through the mist — women balancing buckets on their heads, men on bicycles with jangling bells, schoolchildren carrying stalks of sugar cane as long as fishing poles. When the bush taxi finally arrived at 7.50 — it was just a pickup truck loaded with people and bags of charcoal — Bernardo clambered in for the 29 km ride. The study of this new approach also found that it profoundly lightened the load on the health professionals who are one of this poor country’s scarcest resources, sharply reducing their caseloads at public hospitals and clinics — and, health economists say, trimming the cost of treatment.

“We went up there and were blown away,” Kebba Jobarteh, who heads the HIV care and treatment program in Mozambique for the United States Centers for Disease Control and Prevention, said after his visit to Tete. “We met five groups. They were amazing. This is a potential game-changer for HIV.” Decroo acknowledged in an interview that the study design for his approach did not produce as high a quality of evidence as a randomised trial would. And Tim Farley, an AIDS expert with the World Health Organization who was not involved in the research, cautioned in an email that because the programme was limited to clinically stable patients, the comparison with other patients might be skewed.

But Farley added, “Reducing the health-system burden from these patients is fantastic and allows the scarce clinical resources to be used for more complicated patients.”

The shifting of responsibilities for AIDS treatment from doctors to nurses to community health workers and even patients has been necessitated by Africa’s extreme shortage of medical professionals. Mozambique has only 2.7 doctors per 100,000 people, according to World Health Organization estimates; the United States has 100 times that.

When Doctors Without Borders began providing antiretroviral drug treatment to AIDS patients here in 2003, there were fears that illiterate rural Africans would not take their medicines properly. Before the expatriate doctors would even prescribe the complicated combination therapy, patients were required to show up on time for eight appointments. For the sickest, poorest patients, the bar was impossibly high. “Before the eight consultations were done they would die,” Decroo recalled.

The rules for AIDS care have eased greatly since then, but Decroo became convinced that they needed to change even more. Though more than 6 million people are on antiretrovirals in developing countries, the United Nations estimates that 9 million patients who need them are not getting them.

“If you wait to have enough doctors and nurses to treat everyone, how many generations have to die?” he asked.

Decroo had his “aha” moment in 2006 while reading a paper co-written by Wim Van Damme, a professor at the Institute of Tropical Medicine in Belgium, who argued for a radical rethinking of how to deliver AIDS treatment in poor countries, shifting some tasks to patients. The professor described how people in rich nations with asthma, diabetes and other chronic diseases had become involved in managing their illnesses, and AIDS patients, too, were a potential resource in Africa, he wrote.

“It was like a thunderbolt from the sky,” Decroo said. The idea of patient groups leapt into his mind.

The government of Mozambique has been so encouraged by Decroo’s approach that it has decided to test it in every province this year. “When patients are organised in these small groups, they’re not ashamed anymore,” said Rosa Marlene, a senior official in the medical assistance department that oversees AIDS programs. “People start respecting them because they’re stronger.”

In Nkondedzi, some groups, including Bernardo’s, do not hide the fact that they are HIV-positive, but neither do they flaunt it. They join for practical reasons: to save money and time.

But the groups have also brought leaders like Alface and his wife, Margarida Isaque, to the fore. At a village meeting, Alface rose to speak. “I broke the silence,” he said. “I told them: ‘I’m taking antiretrovirals. If you see I’m healthy, it’s because of that. All those who feel in the same situation, come close to me and we will try to help each other.’” Many villagers have privately approached him, and about a dozen have joined groups as a result. But Azesta Vasco came too late.

She suspected that her daughter, Cesaltina Pedro, a 27-year-old with two young daughters, was sick. Pedro confided to Alface that she had AIDS and had quit collecting her medicines because she was too ashamed to tell her mother she was infected or to ask for money for taxi fare.

He got Pedro to the hospital, but she died a week later. Her two sad-eyed little girls sat with their grandmother recently in front of their hut.

“She lacked money and encouragement,” Alface said. He and his wife are now trying to fight the stigma that drives people with AIDS to hide their disease. Isaque’s nostrils flared angrily as she described a recent incident when a drunken man, in front of other villagers, said she had AIDS. Such accusations are against the law in Mozambique, and she and her husband went to the village court. The offender was ordered to pay her about $20 and to apologise.

The village chief, Aviso Supinho, said that Alface and Isaque had raised awareness about AIDS in Nkondedzi and that the groups had improved villagers’ lives.

“If I’m sick and isolated, kept at home, I’m considered a dead body, though still breathing,” Supinho said. “But when a person is in a group, he feels, ‘I’m sick, but I count.’”

©2011 The New York Times