By Meclina Chirwa:
Veronica Kanyama 29, wore a heavy heart.
She had just been diagnosed with Drug Resistant Tuberculosis Bacillus (TB) alongside her then four year old child. Understandably, she feared for their lives.
“How can life do this to me? Why me, and why my child,” this had become her daily routine.
Consequently, she resorted to leave in denial. TB, let along the drug-resistant type, was a new phenomenon in her community and the diagnosis meant an automatic rise to stigma and discrimination from among the very same society she had been friends and family with all along.
For ages, she stayed indoors. She just could not have faced the world “in this way,” so she reasoned.
When quizzed, Veronica suspects she contracted the disease from her husband who did later ignored and dumped her eventually.
Her parents, despite her age, took her back in their care at their Mangochi home..
“It was a very terrible experience for me. In October 2020, I together with my daughter were found with Drug Resistant TB. I had been sick for a while but I couldn’t make anything of it. The discrimination among my family and friends made matters worse.
“I was very much afraid. I felt alone.
“Luckily, I met very supportive health workers and couples with the support from my family, I found it easier to stop living in denial,” Veronica explained.
Acceptance phase was there but Veronica was still ij the dark. She still did not know what is it was she had been suffering from.
With her husband still ignoring her, a thing that forced her to move back into her parents’, Veronica also had to contest with rumours he allegedly kept spreading that she had died.
This, coupled with her increasingly deteriorating health, forced Veronica to seek medical attention for the umpteenth time.
This time around, a breakthrough was finally made. She and her child were diagnosed with [Multi] Drug Resistant TB.
“I was shocked and devastated. It wasn’t expected. I felt doomed. I But the health workers have been good to me, they restored hope in me worth living for. I am very proud of them,” She said.
However she complained of high levels of stigma and discrimination which gradually ate her health and affected her daily life.
She said despite having information and knowledge about Tuberculosis (TB), majority of people in her community still had a negative mentality that TB is not curable.
Her coming out to declare the status brought a hostile environment which prevented her from enjoying public life.
“Life was not the same at all after the community realized I was diagnosed with Drug Resistant TB. I became a laughing stock, I was tormented and insulted big time, because by then my health had heavily deteriorated,” lamented Veronica.
Meanwhile she indicated that lack of food was another problem which needed immediate intervention and therefore appeals to government and other well wishers to support her with food and transport to be used when visiting a health centre to receive drugs situated at a distance of about 15 kilometers, citing them as major challenges affecting her health and that of her child.
“Food is my biggest challenge. I usually struggle to get food and transport to the hospital. Of course we receive food stuffs on quarterly basis but it’s not enough considering that I don’t have any source of income and I only depend on my mother to provide everything for me,” She said.
Continued stigma and discrimination towards people with Multi-Drug Resistance TB worries patients as they face community exclusion. This could be an isolated case out of many cases happening in various communities where such patients are dying in silence.
For the authorities the continued spread of the disease is one of the most urgent and difficult challenges facing TB control.
Another drug resistance patient Charles Chibisa 26 of Thom Allan village Traditional Authority Mwambo in Zomba district said high levels of discrimination are heavily affecting livelihood of TB patients in the country.
“It is very unfortunate that we are being discriminated against and insulted just because we are on TB treatment. For some time I have been indoors to avoid the insults from community members. My guardian tries his best explaining to them that TB is curabl. Unfortunately, and anyone can suffer from it, but some do not understand chich is very pathetic”.
Chibisa said physicians told him that TB is curable provided he adheres to their instructions and not defaulting on drugs. He expressed optimism he will be full again after the stipulated period of taking MDR- TB drugs.
He owes much respect to health authorities at Zomba Central Hospital (ZCH) for their tireless efforts in ensuring that TB patients are getting the necessary support.
“Since I was diagnosed with MDR-TB the health workers have been visiting me and ensuring that I adhered to the drugs that I receive from the hospital. Every time I visit the hospital to take drugs, they always attend and assist me accordingly, a clear indication that the civil servants and government are committed to eradicating TB in the country.” said Chibisa.
A TB officer at Zomba Central Hospital responsible for urban services Madalitso Chiundira admitted that TB patients are facing stigma and discrimination in their communities.
Chiundira lamented “It is very true that stigma and discrimination is happening in the communities. We have been receiving such reports for quite some time. However we are still discussing on how best we can address the situation.”
However Sosten Mtalika Deputy Drug Resistant Tuberculosis Coordinator at the National TB control and Leprosy Elimination program says despite the challenges, Malawi is on the right track in fighting TB.
“Indeed there are some challenges that we are facing in as far as fighting MDR TB is concerned, but I can proudly say we are on the right track.
“We have done a lot especially implementing interventions of ensuring that patients are receiving the best treatment services ever,” he said.
However he was quick to point out that the National TB Control and Leprosy Elimination Program is conducting psychosocial trainings to community to community volunteers and facility health care workers as one of the measures to fight stigma and discrimination.
“Currently we have 126 DR-TB patients on treatment. Based on the 2018 data, 73 per cent of DR-TB patients completed treatment an indication that we are on the right track in as far fighting DR-TB is concerned in the country,” he said.
Based on the data from the Malawi National TB and Leprosy Elimination program from 2017 to 2018, the country experienced a double increase in MDR-TB cases.
In 2018 alone, 126 laboratory-confirmed cases of MDR-TB were reported, of which 107 started treatment from 58 cases in 2017.
According to World Health Organization’s 2020 annual report, an estimated 10 million people fell ill with TB in 2019 and close to half a million developed rifampicin resistant TB of which 78 per cent had MDR-TB.
