Last week's 19th International AIDS Conference saw over 20,000 activists, scientists, health workers, celebrities, and people living with HIV from virtually every corner of the world together in Washington D.C.
It was a historic occasion for countless reasons. As I replay the events of the week in my head however, I find my mind going back to two people among the countless faces I encountered.
Mr. and Mrs. Mkoko.
Last Monday night at E Street Cinema, a much-loved independent theatre in the heart of the district, ACTION, in partnership with the Open Society Foundations, the Yale Visual Epidemiology Project, and RESULTS Educational Fund, hosted an advanced screening of They Go To Die, a documentary film currently in production that tells the personal story of four gold miners in South Africa. Mr. and Mrs. Mkoko are one of four families in the film -- Mr. Mkoko, who was present at the screening, is the only one of four miners who has survived the hardships resulting from his time in the mines.
Ultimately the stories in They Go To Die are about family. Scenes from cooking dinner to requesting the newspaper are made more poignant however by being set against the backdrop of the family hardships created by multidrug-resistant tuberculosis (MDR-TB), a disease that is rampant in the mines (28 times declared a health emergency). All four of the miners acquired the disease while working in the underground mines. All four were sent home when they were no longer well enough to work. Only Mr. Mkoko ultimately survived.
The hope of these families is that their sons will replace these men in their mines, where contracting tuberculosis is a certainty, death is a risk, but not a more powerful certainty or risk than the inability of these families to survive without this income.
The producer and director Jonathan Smith, a recent Yale public health graduate, is a scientist by training and a filmmaker by accident.
While studying public health at Yale, Jonathan was assigned a research project: to study the epidemic of tuberculosis (TB) within the South African mining workforce. What he found was that miners have been studied so often over the last hundred years that they now feel like guinea pigs in service to academia but without seeing any tangible benefit in terms of the health burdens they suffer.
So Jonathan scrapped the idea of a research paper, grabbed a video camera, and flew to South Africa to get a different kind of story. Over the next few months, families graciously opened their home to Jonathan. He lived with and filmed the lives of four men, all of whom had acquired MDR-TB on the job and had been sent back to their villages -- places where treatment for such a complicated and aggressive disease was rare or nonexistent.
Mr. Mkoko is one of those four miners -- the only one to have access to treatment, and the only one alive today.
Mr. Mkoko is tall and wiry, with a face weathered by hard work and softened by an enduring sense of humor. He sat with his beautiful wife at the front of the theater, fielding questions from the crowd. The moderator had to relay the audience's questions directly into his ear, deafness being one of the permanent side effects of the drugs used to cure him.
Mr. Mkoko described his health (he is stable and feeling healthy these days), the treatment he received from his employer after he found out he had TB (he was released from the company and told they couldn't care for him), and his wife's love and loyalty through all of it -- the only reason, he says, he's still alive.
I asked Jonathan what opportunities lie ahead for advocates fighting to eliminate TB in the mines -- where stale air, close working quarters, high rates of HIV, and noxious silicon dust combine to form the perfect storm of risk factors for acquiring TB and inadequate care and treatment fuel the MDR-TB epidemic.
"Late in August, heads of state from 15 governments within the South African Development Community (SADC) are signing a declaration calling for zero TB deaths among the mining workforce," he says. "This is a multi-government commitment to fighting this problem. But civil society needs to ensure that member states keep their promises, and they need to ensure adequate resources and mobilization around the issue."
According to Jonathan, coordination is the number one barrier to achieving the goal of zero TB deaths from TB acquired in the mines.
"There are a lot of people doing a lot of good things, but individually they have limited effectiveness. There isn't adequate communication between the various actors. This absence of coordination is killing people."
But this can change.
First, civil society living in SADC countries can help ensure their governments implement the commitments in the "zero TB deaths" declaration when it's signed next month.
Second, mining companies -- a few of which are now providing quality health services to their workforce -- can come together with the health agencies, civil society, and faith-based groups to implement TB screening and treatment programs within the companies and provide community support to families already impacted by the disease. There is a huge opportunity here to make the mining industry not only one of the biggest economic drivers, but one of the best and most focused contributors to healthy and productive families and economies.
Third, eventually consumers should be able to use the power of the pocketbook to hold gold companies accountable for ethical health practices in their operations. Jonathan has already begun working on an effort to certify gold mined ethically as "Lung Safe."
It's not inevitable that gold miners should have the highest rates of TB in the world. It's not acceptable that they should be sent home to die.
Next month, eyes will be on SADC heads of state, and I expect their declaration to the beginning of the end of this injustice. Civil society awaits the leadership of these heads of state and the mining companies.
Kolleen Bouchane is the Director of ACTION, a global partnership of advocacy organizations working to influence policy and mobilize resources to fight diseases of poverty and improve equitable access to health services. ACTION's current focus issues are tuberculosis (TB) -- the leading killer of people with HIV/AIDS -- and increasing equitable access to childhood vaccines.
Follow Kolleen Bouchane on Twitter: www.twitter.com/bouchane