/ 16 March 2007

A response from hell

I was diagnosed HIV-positive in 1990. I've been taking antiretrovirals for nearly eight years. I survived TB meningitis in 2002. I feel healthier now than I did 20 years ago. Maybe that history should make me fear a new, unstoppable killer within the TB and HIV pandemics. But newspaper stories on XDR-TB (extensively drug-resistant TB) do not leave me quaking with fear of this new illness, writes Judy Seidman.

I was diagnosed HIV-positive in 1990. I’ve been taking antiretrovirals for nearly eight years. I survived TB meningitis in 2002. I feel healthier now than I did 20 years ago.

Maybe that history should make me fear a new, unstoppable killer within the TB and HIV pandemics. But newspaper stories on XDR-TB (extensively drug-resistant TB) do not leave me quaking with fear of this new illness. Rather, I am upset, angry and depressed at how our society is dealing with this problem.

The first press reports on XDR-TB called on government to isolate people with “the killer disease” rather than to search for what was labelled expensive, unobtainable and uncertain treatment.

Chris McGreal in The Guardian wrote: “South Africa is considering forcibly detaining people who carry a deadly strain of tuberculosis that has already claimed hundreds of lives …The country’s health department says it has discussed … the possibility of placing carriers of extremely drug resistant TB or XDR-TB under guard in isolation wards until they die.”

These articles present arguments saying we should protect ourselves by harsh “control” of sick people, even where this negates their human — and constitutionally guaranteed — rights. This theme has become our most common response to XDR-TB.

In December TB patients at Sizwe Tropical Disease Hospital on the East Rand rebelled, taking control of their hospital ward. Officials announced that some of those patients had drug-resistant TB. The patients themselves claimed they had not seen a doctor for two months, and demanded “passes” to leave the hospital. The police then moved protesting patients to a “more secure” hospital in Pretoria, until security on Sizwe wards could be tightened. Three months later the Sizwe Hospital manager now admits they are holding 168 patients with drug resistant TB — including 18 children. Is this the practice of “isolate until they die”?

Doctors and activists both in South Africa and worldwide (notably doctors practising in the Western Cape, the Treatment Action Campaign and the World Health Organisation) have proposed a range of measures to deal with XDR-TB that do not violate patients’ human rights. But public debate in South Africa ignores these measures, and we see few steps here to implement them. Last week, a Sunday Times headline read: “No isolation, so TB carriers pose threat to all” — even though the article itself lists recommendations from the World Health Organisation to control the disease. Most medical authorities, in fact, agree on basic steps to control drug resistant TB.

First, we need desperately to improve treatment of “ordinary” TB with HIV, within our broader health system. Drug-resistant TB strains — MDR and XDR-TB — notoriously thrive in failed health systems, where patients cannot maintain an uninterrupted, sufficient and appropriate drug regime. The protocol in the developed world is 12 to 18 months’ treatment for patients who have TB and HIV, not the standard six months of drugs that the government health department provides for TB patients. Our health system today is failing to deal with TB piggy-backing on our HIV epidemic, and drug-resistant TB is the result.

The second step is to quarantine people who are actively infectious with XDR-TB. But many people with TB (and even XDR-TB) are not infectious. Patients who do not cough do not spread infection through the air. Patients who respond to treatment are no longer infectious after the drugs take effect. Patients need to be quarantined only until the drugs start to work — for days, not weeks or months.

This “quarantine” should be very different from “isolation”; and must never mean “incarceration”. XDR-TB patients must never be placed in closed rooms with others who have TB. This leads to cross-infection with drug-resistant strains.

An article in the Lancet late last year reported that in the Tugela Ferry outbreak of XDR, the only known contact between all 53 XDR-TB patients who had the same strain of TB was in hospital wards, suggesting the infection spread at the hospital itself. We must never prescribe that a patient must remain in quarantine “until death”.

Quarantine and isolation only work to prevent the spread of disease where the patient accesses treatment. Without treatment, many patients resist isolation (which appears a punishment for being ill, not a medical measure), break quarantine, and go into denial. We have seen all this with HIV and Aids.

The third principle is that treatment, unlike quarantine measures, must continue until the TB infection is cured, not merely suppressed. Patients who are sent home to recover must be able to travel to hospitals to get their supply of medicines. With HIV, treatment must continue for long enough to deal with more persistent opportunistic “piggy-backing” illness.

We need to identify drug-­resistant strains when those occur, and adjust medicines appropriately. Doctors must have access to alternative drugs to treat resistant strains, even where these are more expensive, or may have side-effects. (Consider that people receiving chemotherapy for cancer also face severe side-effects: most accept this to prevent death from untreated cancer.) This treatment requires added training for medical personnel, and access to laboratories.

Finally, we need to educate both patients and the community on what they can expect — what they should expect and should receive — both by way of treatment and infection control.

All of these measures require resources. But using our resources to improve our health system, to identify, quarantine, educate and treat TB patients, will be far more effective than spending our scarce resources on incarcerating ill people until they die.