To the ends of the earth
SEKHUT LONG, Lesotho – She left this village in the mountains gaunt and weak, taking tiny steps along a thin ribbon of a path, the community’s only link to the outside world. Matsepe Lenkoe’s five children tearfully said their goodbyes – goodbyes, they feared, for good.
For three hours she walked with great difficulty, supported by her elderly mother, until she reached a town named Ketane. There, a small aeroplane flew her and her mother to the capital city Maseru – less than 160 km away, but a journey that takes more than six hours by road.
Lenkoe’s body harboured a grim cocktail of two deadly infections – HIV and TB – which was later diagnosed as multidrug-resistant TB. But she was fortunate in one important respect: her government had only months earlier started fighting the spread of TB with everything it could muster.
This was no simple task, especially in Lesotho, a small mountainous kingdom landlocked by South Africa. Its population of approximately 2 million inhabits mostly rural areas – some living near treacherous roads that are sometimes obliterated by floods or blanketed by heavy snows. Others live far from roads, tucked into the folds of mountains that can be a day’s ride by horse to the nearest town. Cell phones do not work here; foot messengers bring news.
When it came to mounting a national response to multidrug-resistant TB, or MDR-TB, Lesotho faced other obstacles. It had no laboratory capacity to process sputum samples for TB diagnosis; it shipped all samples to South Africa. It had no pharmaceutical system through which to order the proper drugs for patients such as Lenkoe. It had almost no doctors or nurses trained in treating MDR-TB. It had no hospital with the proper infection control measures to protect health-care workers. And most frighteningly, its TB epidemic was being fuelled by the explosive number of HIV and AIDS cases: an estimated 23% of adults aged 15 to 49 years were infected with HIV, the third highest rate in the world, unknown thousands of whom were coinfected with TB.
But the country did respond, acting almost immediately in 2006 when, in the words of Health and Social Welfare Minister Dr Mphu K. Ramatlapeng, “we had the scare from South Africa”.
The scare was an outbreak of extensively drug-resistant TB (XDR-TB) in Tegula Ferry, a town in South Africa’s KwaZulu Natal province, just beyond Lesotho’s eastern border. Of the first 53 patients, 52 had died. From that moment, Lesotho treated drug-resistant TB as an emergency. It created a national plan of action, and from the start sought outside experts.
The Ministry of Health and Social Welfare asked the World Health Organization (WHO) for ideas, which led to an application to the Green Light Committee, a WHO initiative that oversees distribution of quality assured drugs used to treat MDR-TB; the committee approved, with money from UNITAID, the release of drugs for up to 400 MDR-TB patients.
The Ministry also asked for help from two knowledgeable outside groups: Partners In Health, which has experience in treating drug-resistant TB in the developing world, and the Foundation for Innovative New Diagnostics (FIND), which has experience in setting up laboratory systems for a range of diseases, including for TB diagnosis.
In April 2007, FIND renovated the country’s main laboratory in two months, reconfiguring the facility from six to four rooms, installing a negative air system with air locks on rooms to protect workers from infection, and introducing a MGIT machine that could complete a number of tests to determine the drug-resistance patterns of TB cases. For the first time, Lesotho would do its own MDR-TB laboratory tests.
Meanwhile, Partners In Health trained doctors, nurses and community health workers to treat patients coinfected with HIV and TB. It began renting several one or two-room homes for TB patients who lived far from Maseru but would need to live there during their treatment in case of emergency. And on the outskirts of Maseru, the Government identified an underused health centre for leprosy patients and turned it into a 20-bed TB hospital that also had a negative air pressure system to lessen the risk to health workers. The renovations, and other work on the MDR-TB project, were paid for with a US$ 3 million grant from the Open Society Institute. The Ministry of Health and Social Welfare also made available its in-house air service – the Lesotho Flying Doctor Service – which picked up TB patients at three remote locations and flew them to Maseru for treatment.
By June 2007, the laboratory was operating.
By July, health workers were treating the first MDR-TB patients.
By September, the hospital was open.
And by October, the hospital was full; one of the patients was Lenkoe, the woman from faraway Sekhutlong.
Since then, the Government’s effort has continued to expand, although the response has not yet covered the entire county. One of the most important developments came in late 2008, when the laboratory began using state-of-the-art DNA-amplification techniques to identify drug resistances in a TB sputum within two days – a huge technological leap in controlling TB. Earlier tests, involving growing cultures from sputum samples, would take between three and four months, which meant that TB patients received the most common drugs; for anyone with MDR-TB or XDR-TB, that was the wrong treatment and months wasted.
Managing and treating MDR-TB are never simple, not even in the most advanced medical settings, and the programme has wrestled with several complications. Dr Hind Satti, Director of Partners In Health Lesotho’s MDR-TB programme, said it appears that patients there have experienced more serious side-effects from anti-TB drugs than in other countries, likely related to HIV-TB coinfection and severe malnutrition. That has complicated efforts to return patients to their communities as quickly as possible; one side-effect, renal or kidney failure, “could create an emergency situation that has to be managed in a few hours or the patient could die.”
She said one major unmet need is economic support to families of patients; in many cases, the patient had been earning wages and the loss of that money often is devastating.
In addition, there’s the worry of undetected MDR-TB outbreaks because the effort does not cover the entire country.
“We have fear about cases in the mountains that we don’t know about,” said Archie Ayeh, Partners In Health’s programme manager in Lesotho. “Unless they present in a clinic or a health worker reports their illness, we have no way of knowing whether they have MDR-TB. It could go on until a whole village is infected.”
The Government’s efforts to control MDR-TB have already resulted in many benefits. One has been to bolster the country’s entire response to TB. “The place to start preventing MDR-TB is to strengthen all TB services,” Satti said.
A key strategy towards that end was training hundreds of community health workers in the basics of TB control, including making sure patients adhered to their treatment. One such worker was Lenkoe’s mother, Malenkoe Lenkoe, aged 67 years. The mother had moved with her daughter to Maseru; after Lenkoe’s stay in the new MDR-TB hospital, the two lived in a rented house provided by Partners In Health. “It was a long effort,” the mother said in 2008, after returning home to Sekhutlong. “My daughter sometimes didn’t want to take the drugs – they were making her confused and angry. I had to talk to her a long time about the benefits.”
Along with other nearby community health workers, the elder Lenkoe walks to the Nohana Health Clinic in Ketane once a month for training updates. Each worker is paid 300 rand a month, or roughly US$ 30. It is enough to buy many food staples.
The path to Sekhutlong hugs hillsides, dropping to riverbeds, and climbing to villages. On a late summer afternoon, the elder Lenkoe walked to her village with Lesole Mokele, a 35-year-old counselor with Partners In Health. Above them, on a steep slope, a sheep herder sang to his sheep. Nearby, a bent-over young girl picked moroho shoots – wild green vegetables. This was a slower pace of life, and travelling long distances was an accepted part of living here.
Matsepe Lenkoe smiles outside her house in Sekhutlong, Lesotho. She returned home having been cured of MDR-TB.
Mokele said the Ketane-based project alone serves 75 villages, many of which were more remote than Sekhutlong.
“We have patients beyond the mountains,” he said. “Sometimes the patients are so sick they cannot walk or stay atop a horse. So people carry them on a stretcher. Last month, men from a faraway village carried a patient coinfected with HIV and TB. When one got tired, another took over. It took them six hours.”
When they arrived in Sekhutlong, waiting for them was a thin woman wearing a red wool cap, a purple shirt, a white skirt, black socks and pink plastic sandals. It was Matsepe Lenkoe, and she was smiling broadly. She had returned to her village on 27 October 2008 – a year after she had left seeking help. On the day of her return, when she crossed the crest of the hill leading into Sekhutlong, her five children ran to her, one after the other, hugging her.
Her middle child, 12-year-old Palamang, wept at her side. He said nothing, he just clutched her. He thought he would never see her again.
Matsepe Lenkoe solemnly looked back at that moment. “I wasn’t sure I would live,” she said, sitting on a stool that overlooked a broad valley and mountains beyond. “If it weren’t for my mother, if it weren’t for the government, if it weren’t for my doctors and nurses, I wouldn’t be alive.”
“I am very happy,” she said. “I can go collect water. I can clean the home, I can prepare food for dinner, and I can be with my children.” She started preparing dinner – rice, greens, and other vegetables. Palamang watched.
The night of her return, he said, he crawled into his mother’s bed. “I slept the whole night with her,” he said.
He had never done this before. He did it the next night as well, and the night after that – and every night since.
“I just want to be near her,” he said, and he rose to help his mother with dinner.