This story was published by African Independent
Lerato was walking home from school last September when she felt a severe pain in her left thigh. The next morning, as the sun rose above Lesotho, the young girl couldn’t walk. In the following days the pain got worse. She would cry all night. The family had little sleep.
After several visits to the local hospital over the next five months, Lerato, aged 10, was diagnosed with tuberculosis (TB) of the bones. It was an x-ray and blood tests that confirmed her condition. She began treatment on 19 April 2016.
On a warm April morning, with the help of a translator, Lerato and her parents tell me this story as we sit inside their small, sand-brick home in Ntsirele, a village on the outskirts of the capital Maseru.
Since she first felt the pain in her leg, the TB has spread through her body. Crippled over a small green walking frame, Lerato now has the figure of a withered grandma. Her face, though, is alight with youth and resolve.
All but bedridden, in March 2016 – before the TB diagnosis – doctors told her she had a septic abscess (a type of infected sore) on her buttocks. This wound requires regular medical attention, ensuring it is cleanly dressed to prevent further infection.
Lerato’s mum, ‘Malebohang Mokone, 41, is proud of her daughter for staying strong through this difficult time. But underneath the welcoming smile and hospitality, a mother’s strain and uncertainty shows. Her eyebrows dip and the worry enters her eyes when discussing her daughter’s health. The stress, she says, is made worse because the family does not have the funds to fully support her.
When there is not enough money for public transport, Mrs Mokone hoists her child onto her back and carries her to the main road, where they’ll get a minibus or taxi to the clinic. She used to sell brooms on the streets of the capital and this helped bring the family a little money. But since Lerato fell ill, Mrs Mokone’s time is spent caring for her daughter and doesn’t have the opportunity to work.
In Lesotho, TB medication is free. But the associated costs – travel to the health clinic and food to go with the medication, to name two – are often difficult to meet for poor families. Mrs Mokone says the cost of a round-trip to the hospital to see a doctor and get an x-ray is about R45 ($US3). This expense is a huge burden for a family with no reliable income.
Asked what questions she has about her daughter’s illness, she says she wants a better understanding of how the TB got into Lerato’s body.
After many visits to the hospital and several consultations with health workers, she is still waiting for a clear explanation.
“I want to know exactly how she has this type of TB,” she says.
Dr John Badia, a Lesotho-based clinician, says tuberculosis “can affect any body tissue”, but the airborne and contagious infectious disease more commonly attacks the lungs “because of its affinity to reach an oxygen-concentrated region of the body”.
Tuberculosis is spread when people who are sick with TB of the lungs (pulmonary-TB) cough or sneeze, expelling the infectious bacteria into the air.
“Occasionally,” says Badia, “when the bacteria replicates, and you get a blood borne infection, or there is a high concentration of the bacteria within the lungs, it basically can reach any part of the body, especially the brain where you have TB meningitis.”
Back in the sand-brick home, talking with the family, it’s impossible not to notice Lerato’s calmness. A quiet strength and authority resides within her. From the moment she crawls across the bedroom floor and gathers herself up onto her walking frame, she unwittingly commands the respect of the room. She doesn’t complain, nor does she expect any special treatment. Her parents are on hand to assist, but the girl wants to do as much on her own as she can.
When asked if she has any questions about her illness, Lerato promptly replies: “Truly, no questions.”
Boitumelo Mofolo, a social worker who supports the family, has seen Lerato’s body deteriorate since September last year.
“The story I got was that she was okay, you know, until just one random day when she complained of a pain in her leg,” says Mofolo, 27.
“That’s where everything started. And the next morning, she couldn’t walk. So the parents took the initiative to take her to the doctor.”
The social worker takes a deep breath when asked how the mother is coping.
“Well, you know, she’s a mother.”
“She’s trying to be brave for her child but I know deep down it’s breaking her.”
Lerato’s father, Napo Mokone, who says he had TB in the past, relies on part-time gardening work for income. But the draught that’s crippling his country leaves little work for him – and many others.
Similarly to his wife, Mr Mokone, 45, is dignified in the face of his daughter’s condition, but his concern and confusion are visible.
Compounding his worries, Mr Mokone is not convinced that Lerato actually has TB. He believes she could be the victim of witchcraft.
“I don’t believe that it is TB for the bones,” says Mr Mokone through the translator. “I just believe because doctors said so. When I look at her I believe it is something done deliberately.”
The translator, Justice Kalebe, later tells me: “In the local context when someone says it is a deliberate thing it means witchcraft.”
He says in Lesotho it is common for people to believe that witchcraft can cause illnesses or that supernatural spirits are responsible for events.
Kalebe, also a photographer who sits on the board of a nearby centre for disabled children, is trying to raise funds for Lerato’s family and increase awareness about the debilitating impact TB has on kids.
“In Lesotho children make up about five per cent of all TB cases,” says Dr Koen Frederix, technical director at ICAP Lesotho, citing 2013 ministry of health data.
ICAP, founded in 2003, is headquartered at Columbia University’s Mailman School of Public Health in New York. It calls itself “a global leader in HIV and health systems strengthening”, providing “technical assistance and implementation support to governments and non-governmental organizations in more than 21 countries”.
According to the 2013 Lesotho ministry of health data, 579 new cases were reported of children with TB. Of the 579, 73 were extra-pulmonary (outside the lungs).
In more recent figures, the 2015 global report on TB – produced by the World Health Organization (WHO) based on data collected in 2014 – said Lesotho had 368 new cases of tubercules in children (0-14) in that year.
Doubt, however, clouds the accuracy of these statistics.
Frederix, a paediatrician himself, suspects “the true number of paediatric cases to be higher, as diagnosis remains difficult and clinicians, mostly nurses, do not feel confident with making the diagnosis”.
Finding specific figures on TB of the bones, which falls under the extra-pulmonary category, proves more difficult.
But, Thato Mokhehle, a nurse who now works with UNICEF on public health programs, says TB of the bones in children is very rare and it is often “misdiagnosed”.
“The signs and symptoms are different from that of pulmonary TB, which is the most common type here, so you find people getting all sorts of treatment which is not for TB.”
From 2009 to 2014, Mokhehle worked at a health clinic in Thaba-Bosiu, about 20 kilometres east of Maseru.
“Working at the clinic I met with only one case of a child diagnosed with TB of the bones.”
What’s more, in her five years at the clinic she saw only two adults with the condition.
In simple terms, doctors and health workers will tell you that TB is a disease of poverty.
Born from poverty and fueled by poverty, TB cannot be defeated without resolving wider social and economic problems. Education, jobs, good housing, proper sanitation. The list goes on.
“Tuberculosis has been a health concern for several thousand years, and millions continue to be afflicted with this disease,” writes Dr David Spiegel in a 2005 paper on TB of the bones, in the medical journal Techniques in Orthopaedics.
“Tuberculosis is most common in areas with crowding, poor sanitation, and malnutrition,” says Spiegel.
“Only a small number of patients with tuberculosis will have osteoarticular [bones and joints] involvement, half of which will have spinal disease.”
United Nations and World Bank figures show that 57 per cent of Lesotho’s two million population live in poverty. As for the wider region of sub-Saharan Africa, the figure is about 40 per cent.
In 2014, the WHO estimated 9.6 million people fell ill with TB. In the same year, 1.5 million people died of the disease. In better news, since 1990 there has been a 47 per cent decline in TB deaths globally.
However, in league with HIV, TB remains a major cause of death, particularly in the poorer regions of the world such as sub-Saharan Africa. In 2014, globally, 1.2 million people living with HIV developed TB.
With these mind-numbing statistics swirling around, it is critical not to lose sight of Lerato. This young girl represents the reason why more needs to be done to eradicate this persistent yet preventable health problem.
For now, Lerato just wants is to get better and return to school.
Asked about her future, an easy smile emerges on her face as she says: “I would like to be a teacher.”
More on the story
WHERE TO FROM HERE?
When crisis strikes, poor families need money
“Solutions are available,” says Dr John Badia, a Lesotho-based clinician who focuses his time on people living with HIV.
Badia suggests the “creation of a mild medical insurance for lower income people to take advantage of during emergencies”.
The Kenyan-born doctor, who studied in South Africa and Australia, says “there would still be a need for immediate services like an x-ray and scan”.
Such medical services are currently available in Lesotho’s public hospitals but at a modest fee.
“Because many people don’t even have those little amounts of money, it’s increasingly putting a lot of strain on families,” says Badia.
“Delays in care often result in worse health outcomes. This is particularly tragic for diseases such as TB that are otherwise curable and preventable.”
Meeting in the middle: witchcraft and modern medicine
It is common in much of Africa “that a super natural being is part of the society”, says Dr John Badia, a Lesotho-based clinician.
Many people believe various forms of witchcraft can explain events, particularly when someone falls ill or bad luck is visited upon a family member.
Badia believes that modern medicine should be placed within existing structures of traditional remedies. That is, work with traditional healers, using their language, but incrementally introduce more modern practices from within.
“I think the best way to address this is to reach towards things that people still believe in [and start your medical interventions from this point],” says Badia.
“Habit change, basically, begins with relating to people at the realms where they understand best. And in that process, then, you turn around tides but in the [language and concepts] of what they understand.
“So, for instance, if people believe tuberculosis is part of witchcraft, then the best thing to do is to inculcate medical know-how within the witchcraft … or religious norms.
“Put your medical interventions within those kind of systems so that people continue to relate with what they understand best.”
In short, use the language of witchcraft to persuade people towards medicine that can save more lives and heal more patients.
Covering travel costs and airtime: simple solutions go long way
In Lesotho, HIV and TB medication is free. But the associated costs, such as travel expenses to get to the clinic, are difficult to meet for poor families. Organising medical appointments also needs a phone, and without airtime to make calls or send texts, medical problems get worse.
Lerato, 10, has TB of the bones. She fell ill in September last year. Her mum takes her to the hospital for x-rays and to meet health workers. By public transport (minibus), a round-trip to the hospital costs R24 ($US1.60). In a taxi, the round-trip is R100 ($6.70). For Lerato’s family, these travel costs are never easy to meet.
Dr Koen Frederix, technical director at ICAP Lesotho, points to a recent study that outlines solutions to support families in similar predicaments.
ICAP, a US-based medical organisation that works with developing countires on improiving their health systems, partnered Lesotho’s ministry of health in 2012 on a program in one district of the country. The minsitry and ICAP designed an “intervention package” that included “practical, feasible, and scalable interventions” to help people living with HIV and TB get their medication and stay on their medication.
An evaluation report, known as the ‘START study’, was completed by ICAP as part of the program.
“Data were collected for the START Study between April 2013 and December 2015,” says the final report. The health outcomes of patients enrolled in the program (‘the intervention arm’) were compared against patients who were receiving the standard level of care. Here is a summary of the findings:
- Anti-retroviral treatment (ART) initiation was higher among patients in the START intervention arm compared to those in the standard of care arm.
- Time to ART initiation was shorter among patients in the START intervention arm compared to those in the standard of care arm.
- TB treatment success was more common among patients in the START intervention arm than in the standard of care arm.
- Among a sample of 371 TB/HIV patients who initiated ART, there was no difference in ART retention at 6 months by study arm.
The success of the program, says Dr Frederix, can be explained by the practical and personal support given to HIV and TB patients.
The START evaluation report lists several reasons why people were able to begin their treatment earlier and remain on medication for the full course.
- Access to coordinated and concurrent TB/HIV treatment.
- Treatment literacy sessions and frequent counseling.
- Positive interactions with clinic nurses, during which their concerns about treatment initiation were addressed.
- Consistent, personalized support from village health workers throughout the course of TB treatment and systematic engagement of their treatment supporters
- Access to transport reimbursements, which alleviated some of their financial hardships.
- Reminder SMS messages and cellphone airtime vouchers for patients and cares, which facilitated communication with health workers.
The question is: Would it be possible to implement this program across the country?
These solutions are good and should be pursued on a larger scale, says Frederix, but “there is no simple solution for poverty-struck families”.
WHAT’S THE LINK BETWEEN HIV AND TB?
HIV and TB: double trouble
When discussing TB in Lesotho, the subject of HIV is never far away. The two health problems have become intrinsically linked. When someone is diagnosed with TB, it should trigger a test for HIV.
In Lerato’s case, she has not yet been tested for HIV. The doctors I spoke to, who have not been treating her, said she should have had an HIV test by now.
“Lesotho has one of the world’s most severe epidemics of HIV and TB,” says a 2016 ICAP study on co-infection. The statistics in the study paint a conclusive picture: “an estimated 72 percent of TB patients are co-infected with HIV”.
Globally, in 2014, 1.2 million people living with HIV developed TB, according to a world health organization (WHO) report. And 1.5 million people died of TB in 2014.
Put simply, HIV weakens your immune system and leaves your body more susceptible to contracting TB.
Lesotho’s ministry of health is well aware of this persistent problem.
“Lesotho, like all countries with a high HIV prevalence, has a very high TB prevalence rate,” says a 2013 government report.
According to WHO, Lesotho has the highest incidence rate of TB in the world: 852 people out of 100,000 people are suffering from the disease.
And UNAIDS figures have Lesotho with the second highest adult prevalence of HIV, with 23 percent of the population living with the virus. According to the most recent UN figures, 360,000 people in Lesotho (of all ages) are living with HIV. From a population of two million, that’s a significant chunk.