It's time for us to notice - SA's dying of TB

Sitting in the Section27 offices on Tuesday, Johnny Clegg said he was shocked when he learned TB was the leading cause of death in South Africa. Two of his band members have been infected and even the daughter of his manager in France had TB. On World TB Day, he was sitting alongside health activists and medical professionals, demanding renewed efforts to fight tuberculosis, before handing over a R100,000 cheque to the Treatment Action Campaign (TAC) and announcing plans to raise R1 million to fight the epidemic. “I probably have the TB bacteria dormant inside myself. Apparently, I understand, 80 percent of the population has it. All of you might have it in this room. It is dormant,” said the award-winning musician. “All of us are potential carriers... It's that kind of information the general public has to get and understand.”

In the press conference on Tuesday and a civil society march in Cape Town to Parliament, the activists again called for drastic change. Before the national TB conference in Durban last year, Section27, TAC, and Medecins Sans Frontiers said the state should declare TB an emergency and encouraged provinces to establish war rooms to confront the epidemic. With the same tone in which they confronted the HIV crisis, they warned of the increasing prevalence of drug-resistant TB, the struggle to provide and keep patients on medication, a lack of support for patients, who often take a horrific amount of pills and struggle with side effects, and the lack of availability of linezolid and bedaquiline, which help treat some types of drug-resistant TB but remain expensive.

The demands are repetitive, almost to the point of being monotonous, but that's because TB is so prevalent and damaging beyond measure in South Africa. TB, which has been around since humans have been recording their histories, is the leading cause of death in the country, despite being both preventable and curable. An SA National Aids Council estimate says 119,000 people died of TB in the country in 2012 and in the same year, the World Health Organisation estimated there were 530,000 new infections. In the five years leading up to 2012, multi-drug-resistant-TB doubled to over 14,000 cases. Drug-resistant TB is caused by inappropriate treatment and patients failing to follow treatment regimes. The medication for such strands can require taking up to 14,600 pills over two years, daily injections, and side effects like nausea, hallucinations, and even blindness.

TB is killing the country, but garners little attention in public discourse. Two months before he died, Franz Kafka wrote from a sanatorium, “Verbally, I don't learn anything definite, since in discussing tuberculosis of the larynx everybody drops into a shy, evasive, glassy-eyed manner of speech.” It seems little has changed. In her Master's thesis to the University of Pretoria, Sara Compion mentions Susan Sontag's writing on TB: “Tuberculosis has always been 'imagined as a disease of poverty and deprivation. If not in the sense of poor nutrition, hygiene and unheated rooms, then poor in emotion, lack of stimulation or a deprived and broken spirit'. Her argument is that what once made tuberculosis seem so interesting and romantic 'also made it a curse and a source of special dread'.”

The sense that no one cares, that TB's a condition of the poor (which can nevertheless touch all sectors of society) prevails. “Poverty is a major driver of the spread of TB as well as overcrowded and unventilated housing and public transport and a lack of good nutrition. For this reason TB is mostly a disease of poor people in poor countries,” reads Clegg's statement. “Tuberculosis does not occupy enough of the South African consciousness,” said Professor Bavesh Kana, who sat next to Clegg on Tuesday, photos of patients and healthcare professionals in the background.

The demands of the organisations represented on Tuesday, which also include Sex Workers & Advocacy Taskforce, Sonke Gender Justice, the Desmond Tutu HIV Foundation, and the People's Health Movement, are hardly enticing for sub-editors creating headlines. The groups want TB care to be decentralised to clinics, as promised, so diagnosis and treatment can be accelerated and adherence to treatment regimes increased. They want key TB medicines made available and a reduction in overcrowding at prisons, where TB often spreads. They want a reform of the patent laws, so new TB medicines can be accessed cheaply, and an audit of the mines to ensure safe living and working conditions.

Mark Heywood, a leader in both TAC and Section27, on Tuesday reflected on the origins of TAC. He mentioned two deaths, one brutal, one tragic, which spurred a movement that reformed South Africa's HIV policy and improved millions of lives. We need a new movement to battle TB, he suggested.

That revolution isn't yet forthcoming. The issue of HIV/AIDS had the mobilisation draw of being new and it responded to specific enemies: in prejudice (homophobes) and in ignorance (Thabo Mbeki). TB, meanwhile, has been around as long as humans have been able to read, and faces an extremely competitive news cycle. On World TB Day, the deputy director of the National Prosecuting Authority was evading arrest, the head of the police watchdog was suspended, and the Proteas were kicked out of the Cricket World Cup.

But as Robert Koch, who discovered the bacillus that caused TB and was later awarded the Nobel Prize, said in 1882, “If the importance of a disease for mankind is measured by the number of fatalities it causes, then tuberculosis must be considered much more important than those most feared infectious diseases - plague, cholera and the like.” The state, under Minister Aaron Motsoaledi, is getting behind the issue and has made positive strides. But until the greater public follows Johnny Clegg and sees TB as more important than issues of sport and daily scandals, a killer we could stop will continue. DM

Photo: Musician Johnny Clegg announced his support for initiatives to fight tuberculosis in South Africa on Tuesday. (Greg Nicolson)