Disability, poverty, TB and HIV: where do you turn?

Being disabled, HIV positive and having treatment for tuberculosis is a challenge that Ellen Banda is all too familiar with.

Being disabled, HIV positive and having treatment for tuberculosis is a real challenge. Add to this, you are living in a rural area with no means of income, and the challenges become unimaginable. Yet this is the life that some people face in rural Africa.

Ellen Banda is 47 and lives in Mushandike village, in Masvingo in Zimbabwe. She tells her story: “I was first treated for tuberculosis in 2000 as well as 2002 before I tested HIV positive in 2008. I successfully finished the courses of treatment but it was very difficult. This year again I have tested positive for TB.”

Banda, married with six children, is disabled and finds it difficult to walk. At times she has endured 4.5 kilometres to travel to the local clinic. She says:  “We do not have a source of income. My husband does not work, he is mentally challenged. Two of my children are also mentally challenged and one is HIV positive.

“I have tested positive for TB the third time and I am already taking ARVs [antiretrovirals] but it’s now a challenge because I have to eat but we have nothing. I am not sure why the TB keeps repeating, but I believe the way we live with my family could be one of the reasons.”

The drought that has hit many places in the country has not spared them and the family does not have enough food from the harvest. Struggling to contain tears, Banda said that at times they have one meal per day and this tempts her to stop taking her drugs.

“When taking the drugs you also need to take enough food which I am not capable to do. Sometimes I feel like fainting after taking the drugs, but since I need to see my kids growing I end up carrying on,” she explains.

Adhering to treatment regimes

Tavengwa Mazhambe is chairperson of the National Council of the Disabled Persons of Zimbabwe and he said that people are in need of food assistance. “This year in this region we did not harvest much. Most disabled people are living in poverty, they have nothing to eat, so we just appeal to responsible authorities to take action because failure to do that will see that most who are taking ARVs or are on tuberculosis treatment no longer take their drugs,” he said.

Lack of funding is hampering the organisation’s activities to support disabled people who are HIV positive and being treated for TB. “We do awareness campaigns on different issues especially human rights issues but lack of money is the major reason we are not reaching many,” said Mazhambe.

People like Banda also face stigma and discrimination. She says: “You know when one is disabled usually you face discrimination but it gets worse when people know that you are HIV positive as well as being treated for TB. Few respect the way you are. I have nothing, my children did not go to school and they are also disabled, so I just appeal to everyone willing to help.”

A need for appropriate services

The situation is serious. According to UNAIDS, globally, 9.6 million people were diagnosed with tuberculosis in 2014 and 1.5 million people died of the disease. Tuberculosis also remains the leading cause of death among people living with HIV, accounting for one in three AIDS-related deaths every year. This is around 390,000 of 1.2 million AIDS-related deaths in 2014.

Dr Zishiri, director of TB Union Zimbabwe, said: “We believe that people with disabilities have the same general health care needs as everyone, including access to TB services. Article 25 of the UN Convention on the Rights of Persons with Disabilities (CRPD) reinforces the right of persons with disabilities to attain the highest standard of health care, without discrimination,” he said.

Earlier this year on World Tuberculosis Day UNAIDS called for a stronger partnership and a united approach to end the twin epidemics of tuberculosis and HIV. Michel Sidibé, executive director of UNAIDS, said: “We achieve the most when we work together and use all our strengths to reach ambitious goals. Harnessing the potential of everyone involved in the response to HIV and TB is needed now more than ever to end these epidemics and create a healthier world as part of the sustainable development goals.

Banda is clear about what she needs. She urges the government to construct more health facilities so that she does not have to travel the long distances to the clinics. She also wants projects for disabled people who are living with HIV and are being treated for TB.

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