Part III: The deadly new tuberculosis

JOHANNESBURG — The room inside the Hillbrow Health Precinct had the makings of a typical conference: PowerPoint on the projector, distributed folders of materials, one guy nearly asleep. But nothing less than the medical treatment and human rights of tens of thousands of South Africans was at stake: They have drug-resistant tuberculosis.

The disease is one of the most controversial topics in public health today. The two forms of the disease, multi-drug resistant tuberculosis (MDR-TB) and extensively drug-resistant tuberculosis (XDR-TB), kill more than half of the people infected with them. HIV-positive people are 10 times more likely to develop active TB. Unlike AIDS, tuberculosis is airborne, hence the fear that has struck the public health community.

An outbreak of XDR-TB in a small South African town killed 98 percent of those infected within 16 days of specimen collection.

XDR-TB has the potential to be a devastating global threat. A recent study in Peru showed a 40 percent death rate, celebrated as a huge success for this disease. In South Africa, mortality rates have been significantly worse, with 60 to 85 percent of those diagnosed with XDR-TB dying from it. With more than 5.7 million HIV positive people in the country, South Africa has found itself trying to balance the rights of the infected with the safety of the public.

Participants at this South African conference debated whether or not to quarantine the TB patients against their wishes.

“We’re not trying to pit isolation against community-based care,” said Mark Heywood, the head of the AIDS Law Project, in his opening remarks.  Despite that pronouncement, a heated battle is exactly what occurred at the conference, and it was a battle that underscores just how controversial XDR-TB can be.

“Isolation is a given, the question is to what extent?” asked Adila Hassim, the head of litigation for the AIDS Law Project. South Africa’s draft policy on TB, which most of the country’s nine provinces are following, dictates that all patients with either MDR or XDR be admitted to drug-resistant tuberculosis hospitals until they have negative test results or for a period of six months.

However, in many cases, people are being kept for much longer than six months, and often without their consent. There have been numerous cases of mass escapes from these hospitals. In September, for example, 12 drug-resistant TB patients escaped from an isolation hospital in Port Elizabeth, South Africa.

Those with XDR may never achieve negative test results, and hence could literally face a lifetime in the hospital. “You have not committed a crime, but isolation feels like a crime,” said Hassim.

During the question and answer sessions the discussion became heated. “It is not okay for these patients to refuse treatment!” cried one doctor.

“What are the liabilities of not being in isolation?” asked Dr. Rianna Louw, the CEO of Sizwe Hospital. The fear is that someone will come to us one day, she explained, charging that he caught XDR-TB from someone who should have been quarantined and was not.

Isolation opponents argue that large-scale isolation may be a case of too little, too late.

“The patient who has come in and is on treatment appears to be a lot less infectious and dangerous than the patient who is sitting out there and hasn’t walked into our hospitals. That’s where the transmission is: undiagnosed, uneducated, untreated patients,” said Bruce Margot, head of the TB program at the KwaZulu Natal Department of Health.

Whereas one might think patients would fear the diagnosis of MDR or XDR TB, or perhaps fear the prospect of death, what they often fear most is isolation.

“If you forcibly quarantine, they go underground.  You drive the epidemic underground,” said Dr. Virginia Fernandes de Azevedo, of Medecins Sans Frontieres.

Patients are so afraid of being isolated far from their families and jobs that some never go to the clinic to be diagnosed, increasing the risk that they will expose others to their disease. An HIV educator in Johannesburg said he often hears patients say they won’t get tested for drug-resistant TB because they do not want to be isolated.

Even if patients do agree to isolation, there is no guarantee that there will be a bed for them.  The World Health Organization has estimated that there were 8,238 new cases of MDR-TB in South Africa in 2007. But there are only an estimated 1,700 isolation beds available, according to Brian Honerman of the AIDS Law Project.

Treatment often doesn’t start until patients are seen at one of the centralized facilities. Waiting lists abound, and while these MDR and XDR patients wait for a bed, they are back in their communities, and highly infectious.Toward the end of the conference, Bruce Margot spoke up again. The room became still; not a single person shuffled or even coughed.

“A lot of us sitting in this room are making policy that’s going to decide an action for a number of people sitting out there. I’d like you to go to five MDR patients’ homes, spend 25 minutes with them, and then come back here and tell me if you still have the same views you had before,” he said.

“You go see the conditions they live under, how they look when each of you say, ‘I’m putting you in hospital for a year. I’m taking your cell phone away; you’ll have enough money for one phone call home a week. And your family will get petrol money for one trip a month. I want to see if any of you could stay in hospital for a year.”

The room broke out in applause.

Part I of this series explains the challenge of treating patients in rural areas.

Part II of this series looks at the effect of the outbreak on children.