MDR-TB survivor inspires innovative treatment centre in Peru

MDR-TB survivor inspires innovative treatment centre in Peru

When Melecio Mayta contracted multidrug-resistant tuberculosis (MDR-TB) in 2001, he thought it was the beginning of the end of his life. Unable to get an accurate diagnosis, let alone treatment or support, he was coughing so much blood that regular employment was rendered impossible.

Incredibly, this situation persisted for over four years. He lost his job; the slightest exertion meant more bleeding; he visited many hospitals and healthcare centres, but to no avail. While he later learned he had MDR-TB, the tests at the time showed only lung damage – and no-one knew what to do.

One day in 2004, after yet another hospital visit, Melecio went to the highest bridge in his home city of Lima with the intention of jumping from it and ending the situation his way instead.

"I thought, I can end this here and everything will be solved. While I did not jump that day, I did accept that my death would be in a year or less. Because I love life, I decided to make the most of the little time I had left”. He was 24 years old.

Driving home from the bridge, Melecio saw a private clinic and decided to walk in. He found a doctor who was a thoracic expert and who agreed to perform surgery. Just a few weeks later, they operated and removed part of the lung. “This was when I got my diagnosis. They said ‘you have MDR-TB’ – and I went into shock again.”

The diagnosis heralded another two years of hospital visits and unemployment. But Melecio was now determined to change his situation.

His experiences being treated for MDR-TB demonstrated first-hand the problems around TB in Peru at that time. TB care is run primarily by government healthcare facilities, and according to Melecio, treatment was regarded as secondary to more profitable areas of public health. He says, “The workers at the healthcare facilities were apathetic, it was like they were doing us a favour, the treatment is free so what do you expect? Proper care and attention? It simply wasn’t worth their while.”

Combined with significant social factors around TB, from poverty and isolation to shame in seeking out treatment, TB was effectively being sidelined and patients were being over-looked.

In 2007, to combat what he saw as the fundamental issues associated with poor quality care, Melecio formed an association with another MDR-TB patient. ASPAT-Peru was created with the vision of being ‘by affected people for affected people’. Focusing at first on advocacy and political communication, Melecio knew they had to find and demonstrate evidence of poor quality care – and how this was affecting the finding and treating of patients and non-adherence to treatment. Working with journalists to shine a spotlight on these issues, Melecio and his team began to make headway in proving that Peru’s TB problem was out of control – a direct contradiction to official government statements.

One of ASPAT-Peru’s triumphs has been a change in the law in Peru. Until the advocacy movement, there were clinical and technical instructions on treating TB, but no specific legislation that addressed issues of discrimination or mental health associated with having the illness.

In 2015, the law was adjusted. Now TB funding is protected, meaning it cannot be reduced from one year to the next or diverted into another cause. The law also addresses stigma and discrimination – a huge problem in preventing patients seeking out treatment due to fear of repercussions. Firing people because of TB is now illegal and the penalties are severe. Another positive is the commitment to making TB a multi-sectoral issue – with Ministries of Work, Women and Culture all having input into TB laws and administration. In government, as in real-life, TB is not simply the problem of ‘health’.

These are significant gains for a tiny team – still just eight people but supported by a network of 50 volunteers, and partnerships with healthcare providers and non-governmental organisations, both locally and globally. To date, the centre has aided 2,100 people, working with them on issues such as general health, nutrition, social and emotional support, and clinical advice.

Melecio says, “I feel we have helped a great number of people – far more than the official figures, when you consider that all patients have families, colleagues and other connections and networks. These all suffer when a person is sick and unable to function long-term. So work places, healthcare systems and more. The impact in this context is huge.”

Melecio had to give up the life he had worked towards because he was ill for so long. His dream of being a commercial pilot could not happen – but now he enables the ambitions and aims of other people by giving them access to the level of treatment and support that he was denied. He says, “I am the pilot of an organisation that makes a difference – that to me is everything.”

Notes:

The Union works closely with partners and stakeholders around the world to raise critical awareness of the multiple issues associated with TB and its drug-resistant versions. This story resulted from a Union-organised media and content gathering trip to Peru to highlight issues relating to TB in the region.

ASPAT-Peru (the Association of Persons Affected by Tuberculosis) is a non-profit organisation. Its efforts focus on health and development related to TB, HIV/AIDS and other communicable and non-communicable diseases. More than 50 volunteers are committed to provide those affected with the tools and resources needed to fight disease, with emphasis on health, nutrition, education, research and social support.

Find out more about ASPAT Peru

Photo by Javier Galeano / The Union

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