I feel outrage everyday.
I think of the stories I know about those who have lived with and died from tuberculosis and I feel truly deeply irreparably angry.
There are millions of such stories. There are reams of data about how this has been allowed to happen. And many who care deeply, who are equally outraged, spend their lives counting, assessing, quantifying, costing, profiling, modeling and testing. It is their data and their sophisticated use of science and math that has saved millions of lives so far in this fight.
Yet sometimes, the graphs and numbers melt together, power point after power point bringing us closer to quantifying 'disease burden' and somehow farther from the basic humanity of the millions who live with and die from this brutal and unjust disease.
Farther away from the outrage necessary to change the global health crime of tuberculosis.
When I get very far away I rely on the 'activist ju ju' of colleagues and friends to bring me back to the 'why' of my outrage.
Jonathan Smith, who recently won (in absentia) the TB Survivor Award here at the Union Lung Conference in Lille, France for his as yet unfinished film, 'They Go to Die' is someone who I can rely on when I get too far from my outraged core.
I met Jonathan a few months ago at the UN High Level Meeting on AIDS. He was supposed to be in medical school, not wandering around meeting folks at UN meeting asking to show them rough cuts of a film he was making. Medical school was a solid plan. But before starting his MD, Jonathan decided to spend about a year in South America delivering hepatitis B vaccinations. He traveled to remote areas of Peru, Ecuador, Bolivia, Chile, Colombia, and Brazil (often lugging vaccinations 2-3 days on foot through the Andes) to deliver and administer these vaccines. He lived in the communities and witnessed preventable deaths, mostly from infections or diseases that in richer countries we barely think about anymore. That changed him. Jonathan decided that when he headed back to Yale, it would be to first pursue a Masters in Public Health, before his M.D.
One of his first reports for his M.P.H. was on tuberculosis and mining. He told me that it wasn't for a grade and so he didn't really put that much effort into it, but as he delivered it to his class he looked at the numbers again and thought, 'Shit, these statistics are wrong, I dropped a zero or something.' The statistics were so damning, he did not believe they could actually be true. He thought, 'I am at Yale -- a [leading institution] in global health. I would have heard about this. This is too blatant of an issue for me not to have heard about it.'
And so it was that his current journey began. The numbers were not wrong. The World Health Organization has declared the rates of TB in the mining industry a health emergency 28 times. Deloitte did an audit and found that only 400 out of 28,000 men who applied for compensation for becoming sick with TB in the mines actually received compensation. That is 400 out of the 28,000 that actually initiated claims. There are countless others who never tried. Men are sent home to die with a fistful of corporate indifference and with no medication. There is no legislation or regulation to protect them or their families. Men go home to die, spread TB to their loved ones and communities and their sons replace them in the mines.
Most mineworkers are migrants, who travel long distances back to communities that lack access to even basic health care. Miners in southern Africa experience rates of tuberculosis up to ten times greater than the general population (already high) and an Oxford led study in 2010 found that migration to and from mines may be amplifying tuberculosis epidemics in the general population -- may even be driving the entire continent's tuberculosis epidemic. After HIV, mining is the 2nd largest driver of TB in sub-Saharan Africa.
Yet, mining is a controlled, regulated activity, not an unpreventable catastrophe or an untreatable disease. 'How,' Jonathan asked, 'Is this allowed to happen?'
Jonathan emailed the National Union of Mineworkers, and their response was, 'we are happy to help you, but so you know, mineworkers have been researched so much that they are being used as guinea pigs.'
So Jonathan went to Southern Africa in the summer of 2010 for a few months to do his own research including filming some interviews. He later described these interviews as, '... the same BS rhetoric... boring to watch... a bunch of talking heads.' He arranged then to go live with mineworkers. He had at this point basically forgotten he was in school.
Living with families, he saw that the primary focus wasn't the disease it was the person. The disease he says, was an 'unwelcome visitor that changed the entire dynamic of the family. Everyone's lives were affected. It wasn't about death, it was about the life that disease affects. I became friends with these families -- they were kind, loving -- they were brought up to respect the same values I was as a southern Georgia boy.'
Though the work was rewarding and life-changing it was also grueling and frustrating. In a recent thank-you letter to those who contributed to a funding drive to continue production of the film, Jonathan told a story about walking long miles when his car could go no further, tripping and falling, bloodying his shins, sending camera gear he wasn't even sure he knew how to properly use yet tumbling into the dirt.
As his frustration at the absurdity of his situation, his frustration at the men dying, the families infected, the communities being shattered gathered into a perfect storm, Jonathan began to scream.
He screamed and screamed and screamed. Until his lungs gave out. His outrage temporarily spent.
But only temporarily.
When his film is fully funded and finished, Jonathan, who eventually taught himself to use that dusty camera equipment hopes to 'turn an epidemic into an emotion' to motivate change. I asked him about his medical studies and he noted, 'I don't need an MD to make this point. The data is there -- this isn't an obscure idiosyncrasy. It's a huge goddamn public health disaster. Can anyone name a worse public health disaster? Its not just that [miners] have the highest incidence and prevalence of TB and HIV in the world, but they are highly mobile, leave highly infectious, and go to communities that have absolutely no healthcare. And nothing is being done. I use the phrase: the strength of data plus the power of humanity equals public health action. That's what will have to happen to change this issue.'
At the moment, Jonathan has enough outrage for all of us who advocate on tuberculosis -- and we have all done plenty of screaming of our own.
But will anyone listen or will he too be screaming into the wind?
See what you think: www.theygotodie.com
Kolleen Bouchane is the director of ACTION (Advocacy to Control TB Internationally), an international partnership of civil society advocates working to mobilize resources to treat and prevent the spread of tuberculosis (TB), a global disease that kills one person every 20 seconds.
Follow Kolleen Bouchane on Twitter: www.twitter.com/bouchane