TB sufferers sent home to die, and perhaps to kill

Out of options and out of hope, Phathisizwe Getye has come home to die.

Phathisizwe  Getye, 30, one of 5,000 South Africans with extensively drug-resistant tuberculosis, was discharged from hospital two months ago when the last available drug treatment failed.

Since then he has confined himself to a tiny shack on his aunt's property in Masiphumelele in southern Cape Town, with just a small TV for company.

"I keep my distance from people, especially when I speak to them. I do it because I wouldn't like to find out somebody got TB because of me," Getye told the Sunday Times this week.

"I don't want anyone else to suffer the way I am suffering."

Getye was diagnosed with TB five years ago and has undergone various treatments for multi-drug-resistant and extensively resistant TB.

He is one of hundreds of TB patients who go into self-imposed quarantine when treatment options run out and hospitals send them home.

"They may leave their home and their community to take off to the mountains to die," said Karen Duncan, a palliative care nurse from Missouri, in the US, who has just spent a week with TB patients in Cape Town.

"They don't want to infect other people. They do it out of selflessness."

John Thomas, the founder of Living Hope, the NGO that hosted Duncan in areas such as Capricorn and Ocean View, said the way highly infectious TB patients lived when treatment options ran out was an injustice.

"They are relegated to a hokkie or tiny shack where food is pushed under a door and they have to be totally isolated.

"We know of families who try and avoid infection by skidding food across the floor to the infected person. That was their form of infection control."

A study of the lifestyle and needs of uncured TB patients, published last year by the Lung Infection & Immunity Unit at the University of Cape Town, said models of care were failing. Patients were inadequately supported and faced stigma in the community.

"The lifestyle of patients whose treatments failed was described as one of loneliness and isolation," the study said.

"Patients whose treatment failed missed companionship and intimate relationships ... Where patients maintained friendships and personal relationships, they did so with limitations."

The study's senior author, UCT's head of the division of pulmonology, Professor Keertan Dheda, said extensively resistant TB had become such a big problem that capacity constraints at hospitals meant uncured people were discharged.

While patients were advised to have their own ventilated room at home, and were given guidelines on infection control, the expectations of adherence were unrealistic for most.

"In South Africa we have a lot of poverty and overcrowding, lots of smoking, malnutrition, HIV and alcohol abuse, and so it is a perfect storm for a lot of TB," said Dheda.

"What we need are long-term, community-based residential facilities where these people can live and work."

Health Minister Aaron Motsoaledi said although hospitals for the treatment of resistant TB had been built in every province, the World Health Organisation recommended patients should be treated within their communities rather than isolated.

When a patient's sputum tested negative, they were sent home. "We have injection teams who visit people at home and other support for people when they leave," he said.

"They are not discharged. They are still our patients, they just get treated in the community."

But Thomas said the crisis was among sputum-positive patients who were sent home - so-called "treatment failure" patients. "These cases are relatively new, and we are the first country to face the problem. We are taking people with a wild, highly infectious condition and putting them back into society for six to nine months before they die.

"If they infect someone else, it's not at level one: the infection they spread is the same one they have - it cannot be treated.

"Living Hope is investigating some form of community house of care and dignity where there is appropriate infection control but with the opportunity of some social interaction, unlike the old leper colonies."