Esther Loleya is the epitome of discrimination that comes with TB. She was chased from her marital home. Why? Her in-laws felt she would pass her multi-drug resistant TB to her husband. Bobby Kabango has followed her. He writes:
It was a hot Tuesday, May 22 this year, when I first met her. Esther Loleya, 33, was sitting in the shade behind her windowless hut. The mud-and-thatch hut was home to 13 people, including her two under-five daughters.
Sad and hopeless, Esther was just a week-old at the house, after her mother-in-law, in group village head Chibweya in Traditional Authority (T/A) Chigaru’s area in Blantyre, chased her from her marital home.
She was forced to separate from her husband after she was diagnosed with multi-drug resistant tuberculosis (MDR-TB) on April 23 this year.
“His mother forced me to go for testing,” says Loleya on how she tested positive to the bacterial disease which does not respond to isoniazid and rifampicin, the first-line drugs given to TB patients.
On April 26, she started taking second-line medicine, an expensive dosage which requires extensive chemotherapy for up to two years.
She had taken the dosage for just a week when the mother-in-law banished her on May 4. Her life is a glimpse of the discrimination and exclusion of people with multidrug-resistant tuberculosis (MDR-TB) face.
“She called my relatives and told them that I had to leave because she was tired of taking care of me. This happened when I was in a critical condition. I could neither walk nor eat. I could barely speak,” she says.
In June, after her story was published in our sister newspaper, Weekend Nation, teams from the National Tuberculosis Programme (NTP) in Blantyre and Lilongwe were sent to meet Loleya, her relatives and in-laws.
After an assessment, the teams found out that the house she was living in was too small, with poor ventilation and there were no proper infection-control measures being observed.
According to national coordinator for Programmatic Management of Drug Resistant Tuberculosis (PMDT) at the NTP, Dr Lilian Beatrice Maliro, during the time of the visit, all the other 12 individuals sharing the home were at risk of getting infected with MDR-TB, especially her two under-five children, with whom she was sharing a bed.
“We also found acute food shortage. Therefore, we decided to admit her at Chiradzulu District Hospital as she had no psychosocial support. The other challenge that we had is that the patient is based in Mdeka, Blantyre, which has no district hospital or any other space to hold MDR-TB patients,” she said.
Maliro said Loleya developed complications due to capreomycin, the injectable drug used in the first eight months of treatment such as acute hearing loss and low blood potassium levels, which was life-threatening.
“We have since then managed those complications and started her on new safer drug, bedaquiline. The new drugs bedaquiline and delamanid have been in use in country since June and Esther [Loleya] is the sixth patient that I have enrolled on bedaquiline,” she said.
Global Fund, the United States Agency for International Development (Usaid) and the World Bank are supporting the PMDT team through the Challenge TB Project, to ensure that all patients have access to the new drugs.
According to Maliro, there is positive improvement, right after she started bedaquiline, her hearing normalised, she reports reducing TB symptoms and has since started gaining weight.
A clinical officer who is taking care of Loleya at Chiradzulu hospital, Patrick Chikuni, said after receiving treatment, Loleya has dramatically improved.
“Upon arrival at the hospital, the patient was alert, ambulatory, fairly sick looking patient but a little bit depressed. Today, we have a different story,” said Chikuni.
According to him, Loleya could have been discharged three weeks ago but the problem was lack of a suitable house to live in.
“Now, NTP, with financial support from the World Bank is to rent her a house in Blantyre. Money is already available and Blantyre assistant district TB officer is assigned to look for a house. Once a house is found, Loleya will be discharged,” said Chikuni.
Another group of well-wishers mobilised and formed a WhatsApp group called ‘Sharing is Caring’. The group, which has about 80 members, has been supporting Loleya with material support at the hospital and also donating pints of blood when she developed anaemia.
The group’s chairperson Richard Kambuluma said apart from supporting Loleya, they are also taking care of her children by donating beddings, clothes, foodstuffs and groceries.
“Plans are underway to build her a house in Mdeka. We have visited Loleya several times at the hospital. We thank God that she is improving,” said Kambuluma.
What is her reaction now? “It’s like I have resurrected from the dead. I still don’t believe this. These are not my relatives but they have shown support from day one. I have nothing to pay back. This doesn’t happen to all patients. Ndapambana chiyani ineyo (What is special about me?”) she wonders.
As she will be discharged from the hospital, the NTP will provide a unique patient adherence package for MDR-TB patients who have minimal or no social support systems.
According to Maliro, Loleya will be the first patient to receive this package. It includes a rented half-way home, a monthly food stipend, in addition to a food package to address malnutrition, a paid daily observed therapy (DOT) supporter and monthly transport refund.
This package will help Loleya and her two children to have enough food as well as someone to help her take medications. She will still have to visit the hospital every month for a medical check-up throughout her treatment which will last 18-20 months.
“As part of her reintroduction in the community, we are also planning to have a community awareness campaign before she goes back home.
“We are also putting in place a stigma intervention package that includes health education through awareness campaigns, trainings on stigma, introduction of the peer counsellors clients programme for MDR-TB patients apart from other interventions,” added Maliro.
Malawi has 120 MDR-TB patients. But there is a second drug resistance survey which is currently underway. n