Mosa's story: Returning an abandoned child
to home and health
When Mosa was first referred to Partners In Health Lesotho (PIHL), she was just 13 years old but she had already received four courses of tuberculosis (TB) treatment in the previous four years. With each new course, her doctors had added one more TB drug to the treatment regimen—the kind of misguided treatment approach that can lead to more drug resistance.
When the clinicians at PIHL met Mosa, her left lung had collapsed from the damage caused by TB and she weighed only 55 pounds. She had been abandoned by her mother at a public hospital in the capital of Lesotho because she was seen as a burden on the household. After PIHL clinicians learned that Mosa’s father was a TB patient who had died while receiving first-line TB treatment, which is very effective at curing drug-suspectible TB, they suspected that her father had been infected with multidrug-resistant (MDR) TB and the disease had spread to Mosa. Realizing that if they waited to confirm the diagnosis—which is very difficult in children—Mosa might not survive, they instead started her on MDR-TB treatment immediately. The clinicians and her community health worker counseled Mosa’s mother and convinced her to take Mosa back so she could finish the rest of her treatment at home.
Six months later, the results of the drug susceptibility testing showed that Mosa indeed had MDR-TB. Twenty-five months after starting treatment, she was cured.A recently published study in the scientific journal PLoS ONE shows that children being treated for multidrug-resistant tuberculosis (MDR-TB) in the small, mountainous country of Lesotho have achieved a treatment success rate of 88 percent–one of the highest in the world.
Led by Dr. Hind Satti, country director for Partners In Health Lesotho (PIHL), the researchers reviewed the records of 19 children–ranging in age from 2 to 15–enrolled in the organization’s MDR-TB program between 2007 and 2011.
Three-quarters of the children included in the study were also infected with HIV, and 63 percent were malnourished before starting treatment. Additionally, the mountainous terrain often made traveling to clinics difficult for patients and their families. However, the results from this study indicate that, as the authors write, “it is possible to achieve favorable outcomes … despite the geographically challenging setting and the high rate of baseline malnutrition, severe lung damage, and co-infection with HIV.”
Of the 17 children for whom final outcomes were available, the study reported treatment success for 15. Two of the patients, both of whom were also infected with HIV, died. None were lost to follow-up. The study defined treatment success to mean either that the patient was cured, with five consecutive negative cultures, or that the patient had completed the full course of treatment and had no symptoms or evidence of TB.
While many children living with MDR-TB simply go untreated because of the difficulty diagnosing and managing the illness, PIHL’s findings prove that children affected by the disease, if addressed with a proper standard of care, can have strong results.
Building a successful model of treatment
PIHL’s success rate is largely attributed to two factors.
First, clinicians didn’t wait weeks or months for slow and often inconclusive tests to confirm a diagnosis of MDR-TB. If they had evidence that children had been exposed to MDR-TB or had not responded to standard TB treatment, they started them on a course of treatment for MDR-TB right away. This “empirical” diagnosis and treatment avoided delays that could prove deadly for the children and lead to further transmission of MDR-TB.
Second, PIHL’s system of comprehensive and continuous care ensured uninterrupted support for patients and their families. In addition to providing the children with free medical care, the team relied on a "community-based treatment delivery model," in which trained community health workers closely monitor patients and evaluate their family situations, helping them overcome psychological and social factors that may impede their access to treatment.
For example, the program helped the patients reenroll in school, covered the costs of transportation to appointments, provided food supplements, and partnered with families experiencing financial instability. The workers assessed each patient’s household and worked to provide income-generating activities for families without stable earnings. “Providing for these psychosocial needs likely helped to achieve zero defaults and favorable treatment outcomes,” the article states.
Achieving results in challenging circumstances
MK's story: With treatment, orphan gains weight—and hope
Fourteen-year-old MK is a double orphan and lives in an orphanage in Lesotho. Infected with both HIV and TB, she was first treated for TB last year with first-line TB drugs, only to have large lymph nodes develop on both sides of her neck after a few months. These lymph nodes are painful and limit her ability to turn her head left or right. After sampling one of these lymph nodes, and testing the sample with GeneXpert MTB/RIF, a state-of-the-art TB detection technology at PIH Lesotho, she was diagnosed with first-line TB treatment failure and was referred to Botsabelo Multidrug-Resistant TB Hospital in Maseru.
As is common for pediatric HIV/TB patients, MK is severely malnourished and has significant growth stunting. When she arrived at our hospital, she weighed 40 pounds and was 3 feet 10 inches tall. At Botsabelo Hospital she is receiving nutritious meals as well as supplements to help her gain weight. She's also receiving directly-observed standardized treatment for MDR-TB and antiretrovirals for her HIV. As of early July, MK's doctors reported that she is responding well to treatment and is almost ready to be discharged from the hospital to continue her treatment at home.
Lesotho suffers from one of the world’s highest incidence rates of tuberculosis infection–634 people per 100,000 are infected annually, compared to just 4 per 100,000 in the U.S. More than 75 percent of those affected are also HIV-positive. The World Health Organization estimates that roughly 8.8 million people worldwide fell ill with TB in 2010, with 1.4 million dying as a result of the disease.
Globally, children make up roughly 10 to 15 percent of those affected by MDR-TB. However, little research has been published about the prevalence, diagnosis, or treatment of MDR-TB among children, and even less has been written about children living with the disease.
Since 2007, Partners In Health has partnered with Lesotho’s Ministry of Health to provide community-based care to children and adults infected with MDR-TB across the tiny nation. PIHL’s treatment success rate with children treated for MDR-TB far exceeds both the national success rate for treating adults with MDR-TB and the nationwide estimated cure rate for drug-susceptible tuberculosis–a much easier disease to treat. That national number stands at roughly 70 percent.
The positive results of this study indicate that a strong and coordinated treatment strategy, combined with a community-based approach to patient care, can be an effective means of targeting MDR-TB—even in a setting with high HIV prevalence and pervasive undernourishment.
In addition to Lesotho, Partners In Health has provided care to more than 13,000 patients infected with MDR-TB in other international sites, including Peru, Haiti, Russia, and Kazakhstan.