South African mine workers have always lived in mortal fear of tuberculosis. They saw miners disappearing into grim hospitals and never returning. It was seen as the end of life.
"We thought if you had TB, you should give up," says Amos Ntlantsane, a former gold miner. "A lot of them never came back."
So when his son caught TB last year, he felt the same anxiety. But his son, Sonwabine, didn't vanish into an institution. Instead he was allowed to live at home while visiting a nearby clinic. "I feel a lot stronger now," the 19-year-old says. "A hospital would have been more stressful."
The innovative stay-at-home program is part of a growing wave of long-overdue efforts to improve TB treatment. Tuberculosis is one of the world's biggest killers, causing 1.4 million deaths annually. It's the leading cause of death in South Africa and many other developing nations – yet it's long been neglected, overshadowed by AIDS and stigmatized as a disease of the poor.
About one-third of the world's population is infected with TB (usually without being aware of it), and the percentage is as high as 80 per cent in South Africa's impoverished townships. But only one new TB drug has been approved by U.S. regulators in the past 50 years, limiting the flow of medical resources for TB sufferers in Africa and elsewhere.
In South Africa, where 1,544 clinical trials for new drugs are currently under way, only 37 of those trials are for tuberculosis drugs, according to Médecins Sans Frontières (Doctors Without Borders), one of the leading innovators in TB treatment. There are seven TB drugs involved in the 37 trials.
Most of the TB drug trials and treatment experiments are in townships such as Khayelitsha and Delft, on the outskirts of Cape Town, where tuberculosis has wreaked havoc for decades. But in many regions of South Africa, people with TB must still wait for hospital-based treatment, and almost all are still treated with the old drugs, even when they are ineffective, because the new ones are highly expensive and still officially unapproved.
Waiting for a hospital bed is not only stressful. It can also be dangerous. Bed shortages mean that some TB patients are dying before they can be admitted to hospital. They tend to be healthier if they live at home while getting out-patient treatment at a clinic. "It's such a massive difference," says Vivian Cox, an MSF infectious-disease specialist in Khayelitsha.
Some clinics and health officials have resisted the shift, fearing that home-based treatment could pose a danger to clinic staff. Others have accepted the idea, making adjustments to clinics and homes to reduce the risk of contagion. Fans are added for ventilation. Doors and windows are kept open as much as possible to provide a breeze. Clinic staff, along with patients such as Sonwabine Ntlantsane, are given face masks and special training.
The new treatment methods and drug trials are a sign that TB might finally get the same attention as other diseases. Tuberculosis researchers hope to find drugs as efficient as the anti-retrovirals that led to dramatic breakthroughs in reducing AIDS mortality. The new drugs have had encouraging results. "It's very exciting," says Zoja Novelijc, who is supervising clinical trials in Delft township.
Until four years ago, Dr. Novelijc was running an HIV/AIDS clinic in South Africa. She witnessed the miraculous effect of the new ARV drugs. "Patients went from being zombies to being human," she remembers. But she discovered that many HIV patients were also suffering from TB – yet they weren't being diagnosed or treated, and there wasn't enough medicine for them.
"It was so frustrating," she recalls. "Out of desperation, I used to stash TB medicine with my nurses because the TB clinics wouldn't give it to me. I realized that I had to become a TB doctor if I wanted to get anything done."
The key, she says, is to reduce the normal six-month treatment period for TB patients – a period that can stretch to two years for the 10,000 South Africans such as Mr. Ntlantsane who are diagnosed annually with a drug-resistant form of the disease. (Globally, only about one-fifth of patients with drug-resistant TB are getting medical treatment, and even those who get treatment will still die in nearly half of cases).
The normal treatment process is so lengthy that many patients fail to follow the full regime, which can breed more drug-resistant forms of the disease. If the treatment period can be cut in half, Dr. Novelijc says, the chances of relapse or drug resistance would be greatly reduced.
Several breakthroughs are already offering new hope in South Africa. One is the arrival of new testing machines, known as GeneXpert, which offer far more rapid diagnosis of drug-resistant TB, providing results within 90 minutes instead of several weeks. South Africa has acquired 150 of the machines since 2011.
Another new weapon is a high-strength antibiotic called linezolid, currently being tested in South Africa. Last month, a 23-year-old patient named Phumeza Tisile was declared cured after two years of a treatment program that included linezolid. She suffered from "extensively drug-resistant tuberculosis" – a severe strain of the disease with only a 20 per cent treatment success rate.
Her treatment was so gruelling that she became deaf, a common side-effect of intensive TB drugs. She had to take more than 20,000 pills over a three-year period, including nine months of unsuccessful treatment before she began taking linezolid. But now she can resume normal life. "Phumeza's cure is nothing short of miraculous," said her doctor, Jennifer Hughes.
One major problem, however, is that linezolid is still covered by a patent by the U.S.-based multinational Pfizer, so it costs nearly $70 per pill – far too expensive for most South Africans. Activists are lobbying for a price reduction.
Another new drug is bedaquiline, which gained U.S. approval late last year. Early results from trials in Khayelitsha have shown dramatic progress in the first patients to receive it.
Dalene von Delft, a South African doctor who caught drug-resistant TB during her public-health work, was one of the first to receive bedaquiline. She had tried the older drugs, but began suffering a loss of hearing and feared she would become permanently deaf. In 2011, she was allowed to take bedaquiline on an experimental basis – and within six months she was dramatically improved. Today she is back to work as a doctor.
Editor's Note: The original print version of this article and an earlier online version said 1,544 new drugs are currently undergoing clinical trials, while only 37 of those drugs are for tuberculosis. Those numbers should have been described as the number of clinical trials, not the number of drugs getting trials as some drugs receive multiple trials. In fact, there are 1,544 trials underway and 37 of those trials are for TB drugs. There are seven TB drugs undergoing trials. This online version has been corrected.