Lesotho's painfully slow fight to treat HIV

This article first appeared in the Globe and Mail, April 6, 2006.

MORIJA, LESOTHO - Lebohang Mokete weighs no more than a porcelain tea pot. Her tiny face alternates between expressions of pain and alarm, a range that neatly covers not only her own situation, but that of her country.

Lebohang is two months old, born in an isolated village in the highlands of this little mountain nation ringed by South Africa. Her mother, Malebohang, died two weeks after Lebohang's birth of what was most certainly AIDS. For two weeks, relatives kept Lebohang alive on water, before carrying the featherweight bundle of baby down from the hills and turning her over to her maternal grandmother, Mojorose Ndaba.

Mrs. Ndaba knew the child was desperately ill, and wanted to take her to hospital, but this presented her with an anguishing dilemma: Her granddaughter needed doctors at a clinic in one direction, but she needed to see doctors in another. Mrs. Ndaba has AIDS, and is one of a few thousand in Lesotho on anti-retroviral treatment. Her stock of drugs was running low and she needed to travel several hours to one of the few treatment centres to have it replenished. She couldn't leave the baby, but she had to get those drugs.

In the end, she brought the baby here, to Scott Hospital, a Christian mission, and staff from a new Médecins sans frontières (MSF) project took the unusual step of giving her enough ARV tablets to tide her over so she could stay to tend to the child.

Little Lebohang's problems are not so easily solved: The odds are high that she too has been infected with HIV, but she can't be tested accurately until she is at least six months old. (There is a type of test that is accurate in newborns but it costs hundreds of dollars more and there is no lab in Lesotho that can perform it.) Meanwhile, she is so malnourished, and generally miserable, that is hard for the staff at the Scott to know where to begin. "There it is: Three generations with AIDS," one doctor said, gesturing at the baby. "That's what's happening in this country. Three whole generations."

Lesotho has the third-highest HIV prevalence in the world. At least a third of the adult population is living with the virus. AIDS has hit all of southern Africa savagely hard, but the decimation of Lesotho is wretched: this country was poor and isolated long before AIDS. When the disease dug in, Lesotho had few resources - and almost none of the people - who would have been required to fight it.

The world woke up to the plight of Lesotho a few years ago, and everyone rushed here, from the big international movers such as the World Health Organization and the Global Fund, to the small but influential shakers in the world of AIDS such as the Clinton HIV-AIDS Initiative and Partners in Health. Lesotho was offered pots of money and technical assistance.

Despite that, 70 people a day are dying of AIDS in a country of 1.8 million. At best, about 10,000 people are on anti-retrovirals. Despite all the money and attention, the rollout of treatment in Lesotho has been glacially slow. This raises some alarming questions, because in many ways, this ought to be a comparatively easy country in which to respond to AIDS: It's tiny; it's culturally, ethnically and linguistically homogeneous; and it's peaceful and democratic. And unlike neighbouring South Africa, where the government continues to drag its feet and prevaricate on AIDS, Lesotho has a government that is passionately engaged and committed to fighting this disease.

So what's the problem here?

The answers serve to illustrate some of the most bedevilling problems in the African pandemic. Even with plenty of cash and crack teams of experts from New York and Geneva, you can't make up for a lack of nurses, doctors, health educators and pharmacists -- and all the money in the world can't quickly change the fear, shame, myths and lies that still cloak AIDS here.

Lesotho began its national treatment program in November, 2004. The government says that 10,762 people have since begun anti-retroviral treatment in the country -- that includes people who accessed the drugs through their employers or by paying themselves to see a private doctor.

But according to the Clinton AIDS program, which is procuring the drugs for all of the government sites, just 5,200 people were given tablets this month, meaning many of the 10,762 who were initially enrolled have since died (high death levels at the start of a program are not uncommon, because the sickest people come forward first), while many others are choosing to keep paying for drugs privately rather than disclose their status and get free drugs from the government.

"I think we have had incredible progress," said Senate Matete, who is in charge of monitoring the program for the government AIDS directorate. "The only problems would be uptake. We would have been happier if there was more uptake but people still feel a bit afraid to come and test, some are not ready to make that lifelong commitment."
But some of the main international players in Lesotho are less positive. "They're trying so incredibly hard and they can't pull it off," said one senior UN figure, who would not speak on the record. "Everything comes down to capacity and they just lack the capacity, especially management capacity."

Mphu Ramatlapeng, one of only a handful of local physicians still working in the country, is now the country director for the Clinton HIV-AIDS Initiative. A key problem is that "the systems in the Ministry of Health are weak. They are very, very weak," she said.

The bulk of trained health-care workers have either fled the country for better-paying jobs elsewhere in southern Africa or, in many cases, have fallen ill themselves. "There are many empty posts in the ministry," she said. "But even if they filled them all, it would still not be enough staff."

International organizations such as hers have tried to fill some of the gaps. The Clinton project imports North American AIDS specialists to train local staff, has assisted with better lab facilities and has built a sophisticated management system to track the drug distribution and the success of the rollout. But that doesn't plug the holes in the basic health system.

"You have clinics in the mountains that have not one doctor, not one nurse, maybe only a nurse assistant if they are lucky."

There are said to be just 40 practising physicians in the entire country, almost all of them foreigners who don't speak Sesotho, the most common local language.

The government now offers ARV treatment in 30 sites around the country and is in the process of training staff at the rural clinic level to administer AIDS treatment. This is crucial, Dr. Matete pointed out, because many people in the highlands live hours from a health-care centre, and cannot afford transport "or they are too sick to come even in a donkey cart," she added.

The ministry is also planning a national "Know Your Status" campaign, set to kick off by June, in which every person will be offered an HIV test, an effort to push some people past the fear of the disease and into the expanding network of care.

Jim Yong Kim, the former director of AIDS programs for the World Health Organization who thought up the Know Your Status plan and heads the Partners in Health initiative here, agreed it was "all real and all problematic" that treatment has moved forward so slowly to date in Lesotho, but said he believes that the next few months will show a difference. "We can go from 5,000 to 20,000 in a matter of few months. They really do have a lot of infrastructure and there is a very high quality of technical assistance. And in a year or less, once people start seeing the impact of treatment, it will change and change quickly."

Dr. Ramatlapeng, too, sounded a cautiously optimistic note. "We're starting to see it, the curve is starting to curl up [showing an increase in the number of people tested and treated]." Close to 500 more people a month are enrolling in care programs, she said.

For Mrs. Ndaba, sitting in Scott Hospital with her waif of a granddaughter, there can be only optimism. She doesn't know it's not possible to test the baby for HIV, nor that just 400 children in the entire country are getting AIDS drugs. She's lost her daughter, and been entrusted with this child. "I expect the baby will get help like me," she said. "I get treatment and I'm still alive."

Landlocked kingdom

Formerly Basutoland, it was renamed the Kingdom of Lesotho upon independence from Britain in 1966. It's made up mostly of highlands where many of the villages can be reached only on horseback, by foot or light plane.

Years of military rule came to an end in 1993 and political unrest calmed with the reinstatement of a constitutional government and the return of King Moshoeshoe from exile. His son, Letsie III, is now ruler of the constitutional monarchy and peaceful parliamentary elections were held in 2002.

Surrounded on all sides by South Africa, much of the tiny country with spectacular canyons and thatched huts remains untouched by modern machines, but developers have laid down roads to reach its mineral and water resources.