March 23, 2007
Monica Juma takes more than 20 pills a day. She also receives a very painful injection each morning and has to swallow granules mixed with lemon juice, which upset her stomach. Sundays she gets to take a break. Monica is infected with both HIV and multidrug-resistant tuberculosis (MDR-TB), a more persistent form of the disease that continues to kill nearly two million people every year.
When Monica started coughing heavily in late 2005, it seemed clear that her TB infection had relapsed for the third time. In less than four years, Monica had been through two full courses of TB treatment, each lasting eight months. If she wanted to stand a chance against MDR-TB, she would now be facing two years of twice daily clinic visits to receive her medicines.
A widowed mother of five, Monica found out she was HIV positive soon after her husband died in 2000. Though he had never been tested, she assumed he died of AIDS, as she watched him become very thin before his death. Monica began taking antiretroviral (ARVs) medicines in 2003, and does well on them. She receives treatment through the "Blue House," a clinic on the edge of Mathare, one of the more violent slums of Kenya's capital, Nairobi, where Doctors Without Borders/Médecins Sans Frontières (MSF) treats people with TB and HIV.
"When I started taking ARVs, I felt good and I continued to go to my hometown of Busia near the Ugandan border to buy clothes and shoes to bring back and sell in Nairobi," Monica says. "But then I started coughing up blood again, the chest pains were back and my joints began to hurt. I was getting weaker and I had to stop working."
Doctors at "Blue House" knew they had to act quickly. It was unclear whether Monica had developed MDR-TB by failing on previous TB treatment and becoming resistant, or whether she had been directly infected by an MDR-TB strain. But as a patient co-infected with HIV, Monica did not have time on her side.
MDR-TB treatment, which ideally requires a place to hospitalize patients that are still in the very contagious early stage of treatment, along with drugs that are extremely expensive and scarce, was unavailable until MSF began admitting patients last year. MDR-TB does not respond to the two primary medicines used in standard treatment. What is left is a series of much less potent but much more toxic drugs that have to be taken for a much longer period of time, costing health care providers up to $ 10,000 a full treatment course.
MSF began treating MDR-TB in Kenya in May of 2006. With four patients enrolled at "Blue House" and three on the shores of Lake Victoria in a town called Homa Bay, MSF remains the only provider of MDR-TB treatment in the country today. Around Nairobi alone, it is estimated there are about 50 cases, but there is no capacity to absorb them.
"Blue House" does not have a facility where people with MDR-TB can be hospitalized, so the four patients are seen in a small makeshift isolation area near the back of the clinic. They enter through a special door to avoid contact with other patients, especially those with HIV, who would be prime candidates for developing the disease. A fifth patient is on the way.
"We had two options: start treatment on an ambulatory basis with good follow-up, or wait until there was an isolation facility, knowing that the first 30 to 40 patients would die," says Dr. Liesbet Ohler, MSF's doctor in charge at "Blue House." "We chose to start treating, but what we have now is only an emergency solution."
Monica lives roughly four kilometres from Blue House, in a room she shares with her five children and her four-year-old granddaughter, Joyce. Although tiny, Monica's place at least has two windows to allow for crucial ventilation and sunlight, which both help cut down on the amount of infectious TB bacilli floating in the air. None of her neighbors know she is ill with this aggressive form of TB.
"I worry about giving MDR to my family, but I have to take care of my children, so I have no choice but to live here with them."
– Monica Juma, MDR-TB and HIV patient
"Only the children know I'm sick," she says. "I worry about telling the neighbors because of what they might think."
Monica doesn't wear a mask in and around home, but she tries to at night, when she shares her bed with three of her children.
Since Monica has no longer been able to work, her daughter is the sole breadwinner for the family. Working as a household help, she is barely able to earn enough to cover the rent, and Monica takes care of the children in between her trips to the clinic. One of Monica's teenage sons and her grandchild Joyce are suspected of having been infected by her. Joyce in particular spends much of her day with her grandmother.
"During the day, Joyce plays and enjoys nursery school, but at night she sweats and coughs, and complains of chest pains," Monica says.
The doctors at "Blue House" ordered a chest X-ray on Joyce. The white cloudy bits on the X-ray indicate she could have TB.
Diagnosing TB is extremely difficult and requires patients to produce sputum samples from within their lungs. To be sure it is a case of MDR-TB, samples must be sent away to labs where the bacilli are grown for up to two months. The wait to be sure about whether a person is infected with "regular" or with MDR-TB can be too long for some, especially those who also have HIV. For children, producing a sputum sample is even more difficult, and requires the expertise of specialists.
"It's hard not to feel like we're fighting a losing battle with the tools we have today."
– Dr. Liesbet Ohler, (MSF, Nairobi)
"TB is difficult to diagnose and treat under the best of circumstances," says Dr. Ohler. "But here in these cramped quarters of the slum, where many people don't have windows to bring in a flow of fresh air and sunlight, and where many people are already living with weak immune systems because of HIV/AIDS, the risk of MDR-TB spreading like wildfire is immense."
TB remains the leading killer of people with HIV/AIDS, who are prone to developing the disease. But diagnosing TB in people with HIV is very difficult and treating both illnesses at the same time can be complex because of drug interactions.
"I dream of a treatment for standard and MDR-TB that could be as short as several weeks," says Dr. Ohler. "It's hard not to feel like we're fighting a losing battle with the tools we have today."
Monica, meanwhile, is motivated to take her pills every day. She knows how important it is to stick to her treatment and encourages herself each morning to have the strength to continue.
"I am feeling quite a bit better, so I can't complain, but I worry about not being able to provide for my kids," she says. "When I complete the treatment, I hope to be able to work again."
Monica has 21 months of treatment to go. That's 542 more days, and 1,084 more trips to the clinic.
© 2013 Doctors Without Borders/Médecins Sans Frontières (MSF)