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The hidden cost of treating TB

Treatment of  disease in Kenya is free, but with it comes hidden expenses that could take a toll on a family  and push them into poverty

Evelyn Makena @evemake_g

Through her daughter’s eyes, Martha Njoki saw fulfilment of her own broken dreams and a more reassuring future. Joyce Wangechi, the last born and the only girl of three children, was her mother’s replica in so many ways.

She mirrored her sharp wit, loud infectious laugh and unapologetic love for life. But just when her life was blossoming, tuberculosis brought it to an abrupt end. At only 12, Joyce died in April 2018, leaving the family grief-stricken and financially crippled.

Joyce first complained of chest pains one May evening in 2017 after getting home from school. “Playing became difficult for the outgoing girl.

To the extent that she would forego swimming during school trips despite it being one of her favourite activities,” says Njoki, who then took her to Mama Lucy Hospital, where she was diagnosed with advanced pneumonia and admitted for two weeks.

Put on oxygen

Despite being on the pneumonia drug, azithromycin for two months, Joyce showed no signs of improvement. “Instead of growing bigger, she was becoming smaller. I was getting frustrated since I was incurring Sh500 every two weeks to buy the drug yet she was not getting better,” says Njoki, who later sought  a second opinion at a different hospital.

An X-ray test at Ngaira Health Centre, Nairobi, in July showed that Joyce had TB. The disease had spread so much and doctors recommended that she starts a six-month treatment immediately.

“’TB is a killer disease. I am going to die’,” Njoki recalls Joyce’s reaction on learning about the diagnosis. But the treatment regimen presented hope for the young girl. Determined to heal, Joyce swallowed daily pills for the next two months without fail before going back to hospital for a review.

However, Joyce became more ill. Her legs and hands swelled, convincing doctors that there was another undetected problem. In the ensuing weeks, Joyce endured another hospital admission at Marula Nursing Home, Mathare North for about 15 days before being referred to Kenyatta National Hospital.

The shock on doctors’ faces once they ran tests on Joyce is still fresh on Njoki’s mind. The two were whisked into the TB isolation unit, where Joyce was admitted. Her mother later learnt that she had Multi-Drug Resistant TB, a severe type of the disease that required a combination of injections and pills to treat.

During admission, Joyce developed breathing complications and had to be put on oxygen.  With no health cover, the out of pocket hospital expenses were slowly draining the family. Joyce, a Class Six pupil, dropped out of school and her mother closed down her small grocery.

“We visited Joyce with her father twice a day incurring costs of up to Sh700 daily. My husband, a casual labourer, became the family’s sole breadwinner,” Njoki says.

Two months into her treatment at the isolation ward, doctors diagnosed Joyce with a heart disease. Her liver was also showing signs of damage as a side effect of the drugs. She was put on more drugs to treat the heart problem. When she was later discharged in February 2018, after five months admission, her medical bill totalled to Sh1,193,143.

That’s in addition to the daily transport costs, lost employment for her mother and days of school Joyce had missed. “We were very fortunate to have the medical bill waived by the hospital following a directive by the President. Patients who had been admitted at the hospital for more than five months benefited from the directive,” she reveals.

Financial strain

Though TB was subsiding, Joyce’s breathing problems persisted necessitating oxygen through out.  The family acquired an oxygen concentrator costing Sh120,000 to keep her breathing at home.  “As we committed most of the finances in treating Joyce, my son, a Form Four candidate then, was at the verge of being sent home due to school fees arrears. I pleaded with the teacher to keep him in school,” she adds.

The family, which relied on illegal electricity connection, resorted to buying a second-hand generator worth Sh7,000 to keep the machine running. That, too, came with additional costs as they needed to buy diesel worth Sh1,000 to keep it running on days they experienced blackouts.

“We were so optimistic that she would recover. The high costs and long nights we spent awake watching over her did not bother us. All we wanted was for her to get better,” she says. This did not come to be.

In April, two months after leaving hospital, Joyce succumbed to the disease. A year after the demise, the family is yet to recover from the financial strain of the treatment. Martha is yet to re-open her business due to limited funds.

Despite there being free service policy for TB treatment in the country, hidden costs consume a huge chunk of patient’s incomes. They include nutrition, loss of jobs and transport to health facilities as patients need routine monitoring and monthly sputum tests and follow-ups.

According to the TB Patient Cost Survey, drug-sensitive and drug resistant TB patients can incur non-medical costs of at least Sh25, 874 and Sh145,110 per episode respectively.   The report shows that 62. 5 per cent of drug resistant and 39.1 per cent of drug-sensitive patients lost their job because of the disease. Additionally, education of 9.3 per cent of children in TB affected households was disrupted.

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