At the very end of the 19th century, Giacomo Puccini premiered his opera of doomed love among starving artists, La Boheme. The heroine, Mimi, has tuberculosis, and her beloved circle of friends is grieved as she declines, wracked by cough. At the end of Act Four, the lovers Mimi and Rodolfo remember their first meeting and falling in love, and following the heart-rending duet “Sono Andati?,” she expires. Mimi was doomed, but also beautiful, and romantic. If only.
The people I’ve met over the past several days suffering from tuberculosis are thin and listless, hunching over with the pain and effort of a cough. The King George Hospital in Durban has been turned over exclusively to the worst cases of all: those who suffer from Multiple Drug Resistant TB, called MDR-TB, and Extensively Drug Resistant TB, called XDR-TB. Intermeshed with the tidal wave of HIV cases, tuberculosis has become the leading cause of death among HIV positive people in South Africa.
The country has long had a TB problem. The disease was unknown here before colonization, brought here by European settlers in repeated waves starting in the late 17th century. The disease found a waiting population unused to the bacterium, and starting in the 19th century more and more fell ill — frequently those working in the gold and diamond mines that made white South Africans rich. Couple the long hours underground in confined spaces near the mine cities of Johannesburg and Kimberley with the dark, confined, overcrowded homes occupied by the rural poor, and tuberculosis gained a foothold in South Africa even as it was slowly being wiped out in many other places around the world.
TB has hitched a ride on HIV’s runaway train. The millions with immune systems suppressed by the virus are particularly susceptible to the disease, and threatening co-infection has become an increasing worry among sufferers and medical professionals. The infected worry about being seen walking into a TB clinic for a test, as it arouses suspicion and carries the stigma of HIV co-infection. The doctors are afraid strains of the disease will continue to strengthen against the arsenal of drugs used to treat TB today.
When people can no longer explain away a persistent cough, when their weight loss and night sweats start to be noticed by family and friends, many finally give in and head to the clinic, where their worst fears are often realized. Doctors counsel a test at the same time to check for HIV and often find HIV infection as well.
The virus that causes AIDS also prospered in the peculiar society created by apartheid. For decades, migrant workers were not allowed to bring their families to live in the sprawling metropolitan areas where the jobs in factories and mines could be found. It was government policy to pretend the hundreds of thousands of working men living in single-sex hostels had no families. Wives and children lived in rural areas far from the cities, and were unable to get the documents that would have allowed them to join their working fathers and husbands.
HIV thrived in the loosening of family bonds and the destruction of sexual exclusivity promised by marriage … unless you wanted to believe that men who could only spend a month or so a year at home were celibate for the other 11 months, and didn’t imagine the young women who were their wives would all wait patiently to carry on their sex lives. Men who visited sex workers, or joined sexual networks with “town wives” they could see more often created the conditions for HIV to thrive. Throughout this epidemic hundreds of thousands of men and women have headed to their graves in their 20s and 30s without ever having had the test that would confirm their progressive disease was in fact AIDS.
Clinical staff applaud the decision to get screened for TB. Billboards, TV commercials, radio jingles and health workers all praise anyone who gets the test for HIV status. It is, however, at that moment that the challenges begin. TB is often dormant long after infection, remaining “encapsulated” in the lung, until a triggering event or underlying health problems start the progress of the disease. At that point, TB moves fast.
HIV often moves slowly and can be managed by drug therapy but is incurable and often fatal. Tuberculosis moves fast, is deadly, and often easily treatable. The drugs are hard to tolerate for many patients if given together, are particularly rough on the liver in combination, and the drugs for one disease lessen the effectiveness of the other.
Today in Durban I visited a massive tuberculosis clinic that screens hundreds of patients a day, checking for TB on an industrial scale. The lines begin to form well before seven in the morning, and snake through the clinic for hours after that, as patients are processed, screened, and treated before being sent to the adjacent clinic for HIV testing. The designers of the Edward VII TB operation thought long and hard about design. This is, after all, a disease passed by proximity and exposure to other infected people.
Doctors and nurses showed us through long screened corridors open to sunlight, and ventilation, both enemies of the TB bacterium. Once indoors, the waiting areas are bathed in sun courtesy of massive skylights. The chairs are well-spaced, and sit on a long rail with no legs to make it easier to mop and disinfect. There are ducts throughout the baseboards of the massive room, specially designed to continuously draw air out of the room to the outside, where it’s scrubbed by HEPA filters.
The NewsHour team at the hospital, producer Merrill Schwerin, videographer Dennis Levkovich, and local field producer Cecile Antonie all moved around the facility in heavy-duty medical masks. The threat of airborne infection is very real, though the medical staff, much of them long since exposed, show us around mask-free and talk about their own risks with a healthy dose of gallows humor. Call me a wimp but I wasn’t taking any chances. I’m sure my family appreciates it, and I’d be willing to guess my 250 or so fellow passengers on the coming 22 hours of flights back to Washington appreciate it as well.
When we talked to patients about their own illnesses, some were open about their co-infection with HIV, others dropped their voices to a whisper and didn’t want to talk any further about it. Khaya, 26, started getting treatment for TB over two years ago, and at the same time found she had contracted HIV from a lover already dead. She was losing weight, she told me, and finding it harder and harder to breathe. When she got the results of her HIV test, she was sure she was going to die.
In her case, the HIV infection had not yet proceeded to the point where her CD4 count, the measure of infection fighting cells deployed by her immune system, forced doctors to make a difficult choice on a course of treatment. It was decided the HIV would wait until the tuberculosis was under control. After her 6-month course of TB treatment she began her antiretroviral treatment. She has gained back the lost weight, has no trouble with her breathing, and has healthy skin and hair. She feels great, she says, and would never take the risk of skipping her HIV meds, remembering to take them with dinner (and just in case, setting her cell phone to ring at 8pm).
Staying on TB medications for the full course of treatment is critical, and the failure of so many sufferers to do so has led to the frightening development of multiple-drug resistant strains of the disease. TB specialists figure any patient who takes at least 85 percent of the course of treatment will be clear of the disease and never threaten anyone else. But an incomplete course of the drug only kills the weakest traces of the infection in the body, and leaves the survivors stronger than ever, impervious to one or more of the most popular drugs once the infection comes charging back.
But it gets worse.
Multiple-drug resistant patients eventually become infectious again, and go on to infect others with this new, virulent strain. MDR-TB needs an even longer treatment period, and even with that poses a much higher risk of death than run-of- the-mill tuberculosis. Some do manage to live with HIV and MDR-TB co-infection. Innocent beat the odds. He is in his thirties, tall and thin. He told me he was already so weakened by both diseases he headed to his TB screenings in a wheelchair. He could no longer stand on his emaciated legs.
Innocent was lucky. His CD4 counts had dropped so low his body was more or less defenseless. The nightsweats and emaciation left him exhausted, and the shock of co-infection had him assuming he was going to die. The doctors could not wait through the much longer MDR-TB treatment period to start the anti-retrovirals for his AIDS. Though he took up to 20 pills a day for months, he didn’t suffer the nausea so many co-infected do when they get simultaneous treatment. Today, he says, he feels better than he has in years. He is once again strong enough to work, and is still gaining weight. The woman from whom he believes he contracted the disease is already dead.
All during this story you’ve got to keep in mind how poor South Africa is. It emerged from half a century of a legally mandated, separate and unequal form of medical care for its black majority ready to begin addressing the injustices. But the years since democracy’s arrival have only seen a greater and greater emphasis on HIV/AIDS and TB, forcing the Minister of Health to become something more like a Minister of AIDS, and keeps the country from achieving its full potential when it doesn’t have a pair of hands to waste.
I’ll have more on all of this in a series of reports on the NewsHour, and further details of our trip in my online reporter notebooks from South Africa.