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Treating Ethiopian Nomads Living with Tuberculosis
by Lorna Chiu
August 22, 2005
As dawn slowly creeps over the horizon of Galaha's desert landscape, 52-year-old Mado emerges from his mushroom-shaped hut–called a daboyta–and limps on his crutch a hundred yards to the Doctors Without Borders/Médecins Sans Frontières (MSF) tuberculosis (TB) center.
"I got the 'coughing' disease," says Mado, a nomadic herdsman, who was diagnosed with pulmonary TB. "I was coughing up phlegm, had a fever for two months, and endured sharp chest pains on my right side. I live in the desert with my herd of goats and travel from one water site to the next. There are no health clinics near where I live, but I had heard that there was a hospital in a small village called Galaha that provided free treatment. Galaha is very far, so I sold a goat to pay for transportation and made arrangements with my neighbors to take care of my herd during my absence."
Mado lost his left foot when a crocodile attacked him over 30 years ago, so on a crutch and in a weakened state he walked towards the nearest town where he took a bus to Mille, a town 15 miles to Galaha. In Mille he bought a seat in a taxi to take him to the MSF TB Center. The journey took one and a half days.
Centuries Old Disease Afflicts Forgotten People
Mado is one of more than 200 people from the Afar region, the northeastern most part of Ethiopia, who are receiving treatment for TB and living in a village built by MSF in Galaha. For centuries, the Afar have survived as pastoralists, migrating with their livestock in search of pasture and water. Every three or so months, they dismantle and re-assemble their traditional daboytas, which are made with thin branches bent and tied to form a semi-circular frame and topped with layers of rattan mats, plastic sheeting, or used grain sacks, and move their family and herds "in the path of the rain." However, the area is drought prone and erratic rainfall patterns force the Afar to frequently move their daboytas.
Their nomadic life has not helped them escape the scourge of TB. The disease is endemic in the Afar region, but access to treatment and other medical care was virtually nonexistent before MSF established the TB center in 2001. Health facilities are only found in towns along the roads and they are few and far between. For a region roughly the size of California with a population of 1.3 million people, there are only two hospitals, eight health centers, and around 100 health posts. These health facilities are not only remote, but also offer limited medical care provided by health workers who do not speak the Afar language.
Designing TB Treatment for Nomads
Since the doors opened at the Galaha TB center five years ago, nearly 2,500 people have been treated there. The TB Center includes an outpatient department, where around 1,000 consultations are carried out per month and an inpatient ward with a 42-bed capacity.
"The Afar nomads were neither receiving quality TB treatment in the local health system, nor were they welcomed there, as they are a marginalized group with a different language and culture," says Dr. John Pratt, a Welsh general practitioner working at the Galaha TB center. "MSF wanted to address their lack of access to good health care and made a good effort to adapt the delivery of services to this special group with its TB Center in Galaha."
To maximize the chance of the Afar nomads completing their TB treatment, MSF implemented a program designed especially for the Kenyan nomadic population called Manyatta. The idea behind Manyatta, which means mobile homestead, is to build a 'patient village' consisting of locally-designed and built daboytas and located in the vicinity of the health center as nomads are willing to stay in one place for the length of their treatment if effective care is available and food and housing are supplied. The Galaha center has a capacity for 400 daboytas.
"MSF is successful in treating the Afar nomads of TB because the Manyatta strategy provides for patients to live near the clinic throughout the intensive phase of their treatment regimen," says Dr. Ayub, MSF medical coordinator in Galaha. "With the national TB program, people living with TB are traveling with their animals daily. Imagine telling people whose livelihood depends on being with their animals that they have to go to a health facility every day for six months to take your drugs."
Newly diagnosed pulmonary positive TB patients live in the patient villages while being directly observed taking their TB medicines for four months, then they are sent home with a three-month supply of medications to administer on their own. In most countries, TB patients follow the World Health Organization (WHO) recommended Directly Observed Treatment Short-course, or DOTS regimen, which requires patients to be supervised taking their medications for their entire six months of treatment.
"At the health center where I used to work, the patients traveled 20 to 30 miles for TB treatment," says Abdu Hassan, an Ethiopian TB nurse working for MSF in Galaha. "Many patients did not complete their treatment because they just couldn't travel this long distance every day to be directly observed taking their medicines."
At 6 am every morning in the MSF TB center, adults and children are broken up into two lines so they can receive their daily dosage of medicine. The drugs are administered before breakfast to increase the absorption into the body. Three patients are let in at a time. They sit facing three health workers, one who will check for jaundice, the most common side effect of TB drugs, the other who will dispense the drugs if there are no side effects, and the last health worker who will remind the patient of any medical follow-up consultations, counseling sessions, or group education meetings.
Depending on the stage of the treatment course, patients take two to five fixed-dose–three drugs in one pill–combination pills. For children living with TB, a health worker has to crush the pills and mix it with water since there is no liquid formula available. After patients take their medicines, they weave around the building where they pick up a ration of milk or a double ration if they are very sick. Four health workers conduct this daily observation exercise in approximately two hours, seeing around 200 patients.
While MSF has been able to adapt TB treatment to the nomadic life of the Afar people, there still remains the difficult task of correctly diagnosing the disease in people like Mayram. Mayram is rail-thin and has a piercing stare. She looks much younger than her age, 22, but that could be due to her gaunt appearance. She is very self-conscious about her thinness and continuously grabs at her veil to make sure her bony arms are covered. Her sister was treated at MSF's TB Center, so she decided to go there. Her brother went with her, as she was too weak to go alone.
"I had been coughing for five months, had night fever, experiencing a lot of chest pain, and feeling very, very weak," says Mayram. "I couldn't even go to the toilet by myself."
TB has taken away much more than Mayram's breath. "My husband left me when he found out I was sick with TB. He also took our two-year-old daughter with him. My other child died when she was three and a half months old. I thought I would die from being sick and die from sadness."
All her clinical symptoms point to a TB diagnosis. But Mayram's sputum-smear test produced a 'negative' result. This is no surprise to Dr. Jamil, an Afghan internist and MSF aid worker at TB center in Galaha, because the 122-year-old sputum smear microscopy test fails to detect extra-pulmonary TB, which was his diagnosis. The main conventional tool medical professionals use to base their diagnoses is this century old test. This test requires patients to produce a sputum (lung fluid) sample, which is then examined under a microscope to find the presence or absence of the tubercle bacilli.
There are several problems with sputum smear microscopy. The test relies on a quality sputum sample. Three sputum samples must be given, one each day for three consecutive days as doctors use the results of two out of three tests to make a proper diagnosis. However, a 'negative' smear result does not exclude the diagnosis of TB as some patients harbor fewer TB bacilli than can be detected by microscopy and some people, like Mayram, may have TB outside their lungs. Children are usually physically incapable of producing the sputum sample and people living with HIV/AIDS generally have immune systems that are so weakened that they either cannot form sputum or have a form of TB, involving other organs, that require, much more sophisticated testing.
"We are trying our best for our patients, but the tools we have to diagnose and treat this disease are old and have not developed for decades," says Dr. Pratt. "If HIV and TB were as common in the West as they are in Africa and other developing countries, I am sure that we'd have more research and development of diagnosis and treatment than we do now. We would have good diagnostic tests that would assure doctor and patient that they indeed have the disease and need treatment. We wouldn't be using medicines that make you feel sick. We would be treating the disease in less time, not condemning people to spend months away from their normal lives. Like the tablets, it is hard to swallow."
Mayram believes she's going to get well. After just ten days of treatment her cough turned dry and she has felt less pain in her chest. Eight months is a long time for Mayram, but she is determined to stay and complete the treatment. "I want to return to my village healthy," says Mayram "MSF is very good to give us food, a place to live, doctors, and medicines for free, so I can stay."
Adherence Counseling is the most important component of any TB treatment program as DOTS is long and arduous for patients and, currently, there is no other recommended alternative therapy. Patients have to be repeatedly reminded to stay consistent with their regimen and complete the entire course of treatment or they will not be cured. Each patient at MSF's TB Center is required to meet with the adherence counselor for several individual sessions and is also obliged to attend a group education session. This approach has yield strong results–80 percent of people complete their treatment with around 10 percent defaulting–but not without big investments in human resources.
"DOTS strategy demands a lot of human resources to ensure that patients comply to treatment," says Francois Colonval, MSF nurse and the Adherence Team Coordinator. "At MSF's TB Center in Galaha, we have staff to follow every patient as best as we can. This Manyatta approach where our patients live steps away from the center allows them to follow more easily the daily observation requirement and come for their medical follow-ups, counseling and group education sessions. It also makes it easier for MSF to first locate its patients in their daboytas if they are absent. But this program involves a lot of scheduling and people. A new treatment approach is badly needed as most health facilities cannot afford the heavy human and financial resources necessary to run a high quality, effective treatment program."
In this first meeting, Ahmed Youssuf, the individual counselor, reviews the treatment regimen the TB doctor prescribed and its requirements, including the importance of finishing the regimen and the repercussions of discontinuing treatment. Disease transmission and strategies to prevent infecting others are also emphasized, such as ventilating their daboyta by raising the mats facing the sun, avoiding spitting inside their daboyta or in the shaded places, and not having many guests visit them in the daboyta especially during night time. With approximately 200 registered patients per month in MSF's TB Center, Ahmed Youssuf conducts an average of 100 consultations per month. "I spend a lot of time sharing information, but I also give them time to share their concerns because it is such a big adjustment they have to make," says Ahmed.
It's been four months since Mado first arrived at the TB Center. Today, Dr. Jamil is conducting a general physical examination on Mado, as he has just completed the four-month intensive phase of the Manyatta TB treatment regimen. Mado says he feels strong and that he is no longer plagued by the sharp pains in his chest. Once discharged, he will be given three months of medicines which he will take at home.
Mado should have been discharged today, but he wants to stay another two months because the International Committee for the Red Cross has promised him prosthesis. He was told there was some delay. "I want an artificial leg so that I can walk like everybody else," says Mado. "I want to wait for it here in Galaha because MSF has made it easy for me to live. I have a daboyta to sleep in, get medical care, and food every week."