“If we fail to support the families that fight on the ground in this epidemic, we are neglecting our largest ally”.
The third post in our World TB day 2014 blog series comes from epidemiologist and campaigner on TB among gold miners, Jonathan Smith.
He didn’t know what to say when I asked him. He was completely jarred by the question, a deer in headlights. With his eyebrows raised he shifted his eyes nervously between his sister and wife as they looked at him, as if he was watching a Ping-Pong match between the two. The room was silent as the two women waited in anticipation while the former South African miner – bedridden from the multi-drug resistant tuberculosis complicated by silicosis and HIV – mustered up the energy to respond. They both doubled as his caregivers, and his response would have significant impact on them far beyond the obvious. He composed himself, slowly took a sip of water from the glass resting on his bedside table, and delicately began to speak.
“I’d say they’re both pretty good cooks.”
The room exploded in laughter as a barrage of pillows flew his way. “That’s not an answer!” one woman shouted as she laughed. “Pretty good?” another lamented. He sheepishly cracked a smile, and then finally began to laugh. His laugh was deep, labored, and heavy; as if his emaciated body was doing all it could to get the chuckles out. Both women continued to proclaim that, indeed, they were the better cook.
That afternoon, the two women situated the miner in a chair before they carried his bed outside. With the southern African sun beating down, they placed it beneath the shade of a tree. “Outside is better, he likes it better out here,” his wife said as she made sure his head would be in the shade. “He hated indoors.” Once the bed was situated, the two women carried the former miner outside and laid him down, where we then ate lunch. Neither of the women were particularly good cooks.
It was rare for the two women to be together, as they typically had separate responsibilities. Each week, the wife would travel to the capital city, about a half-day’s travel away, to work as a cleaner at a bank. She also would secure the complex MDR-TB medication for her husband and bring it home each weekend. The sister, on the other hand, would travel from her home to the miner’s home in order to care for him on the weekdays, keep the children at bay, and get his HIV treatment from the local clinic.
This had been going on for two years, but now, without significant improvement, the women feared the worst. His body was becoming weaker, the drugs were becoming harsher, and his energy was depleting. He was dying. That evening, his wife pulled me aside.
“I’m not sure we will make it through the night. Is there anything you can do for us?” she asked.
Herein lies the confrontation that curiously only the wife of a miner can afford me.
Every expertise has its definition of success. In epidemiology, we often look at successes and failures of public health as a fluctuation in data – a regression line, an R0. This is a good thing. These analyses are critical in knowing how to overcome the world’s most pressing public health issues. In health policy, we look at successes and failures in public health as the influence of a policy on the health of a population – the uptake, the behavior change, etc. This is a good thing, and allows us to shape policy and rhetoric to be most efficient. In innovation research, we look at success and failures in public health as the ability to prove a vaccine, or a new way to deliver diagnostics. This is a good thing, and because of innovation, we have prevented countless deaths.
As an epidemiologist I could have told these women any number of things about overcoming TB in the mining sector – the changes that need to be made for silica dust reduction, the need for single dwelling and family style housing, continuation of care at home, and the list goes on and on. But even the most eloquent explanation would not have helped answer her question. In this moment, to these women, success was not defined by charts and graphs, or policies, but rather by one man making it through one night. It was that simple.
On the surface she was much better equipped to answer her own question. She knew his nutritional needs – where to find the vegetables, where to get fresh water. She knew how to navigate the public transportation to get his medications, and when to administer them. She knew to call her son over to lift his spirits; to remind him that his mother “would be so mad if you left us.” After all was said and done, these were the things that kept him alive. Hope. Grace. Love.
We overlook many of these things in our discussions of disease; they are looked at as soft, bleeding heart, or otherwise ancillary. Scientists get scared at things we can’t quantify. I don’t mention these things to draw an emotional response; these factors – factors that bind families and communities together – have a significant, tangible role in overcoming the epidemic. I can assure you that without the love of his wife, the hope of his recovery, and the grace of his family, this miner would have long since passed away. They are who got him his medication, fed him, bathed him, and all the while made sure he had a smile.
TB in the South African gold mining sector is the single worst public health issue in the world today. The mines have the highest incidence of TB ever recorded in the world, spanning any period in history, and the vast majority of the hundreds of thousands of men who work in the mines are oscillating migrants who travel back and forth between their rural homes and the urban mines. In addition to exposure to the TB bacilli, they are exposed to high levels of silica dust and HIV – two contributing factors to TB that, when combined, exhibit a multiplicative risk for development of the disease. Ultimately, this leads to a population that is incredibly large and highly mobile, and that is exquisitely susceptible to contracting and disseminating TB. Overcoming these issues will take a considerable amount of manpower, time, and ingenuity; and in many other writings my colleagues have provided data-driven papers to address them.
This is not one of those writings. The unattainable expertise of a family who suffers through TB is an area of the epidemic that is woefully under-represented. We speak of these things often – to put a “face to the epidemic,” the “people behind the data,” and so on – but we never consider how, and why this is important beyond the obvious.
If we fail to support the families that fight on the ground in this epidemic, we are neglecting our largest ally. If we fail to consider their lived expertise as equally important to our medical and epidemiological expertise, we are doing an injustice; not just to the individual, but to the entire global machinery that is TB control. To draw from the old adage – our data, policies, and recommendations can lead the horse to water, but the families make them drink.
But how do we provide this support? In the context of millions of cases of TB, how is this logical? The key is realizing that our version of the epidemic is not the same as those families fighting TB, though ours is equally as challenging. Our TB epidemic will never be characterized by cooking dinner for a man dying of TB, nor will we ever traverse the public transit system to locate the appropriate clinic. But that doesn’t mean there is nothing we can do. Our fight is to ensure that those fighting these battles have the tools they need to win; that the global TB funding for innovation and research is secured, that the new developments we need come to fruition, and that data-driven policies that support patient-centred care are rolled out. In continuing to fight our epidemic, we can ensure that future patients avoid illness and the devastation that accompanies TB.
Jonathan Smith is a lecturer in Global Health and Epidemiology of Microbial Diseases at Yale University and an affiliate of the Yale Global Health Leadership Institute, where he researches epidemiology of TB and HIV in the context of migrant populations. He is currently spearheading the Visual Epidemiology Project at Yale, an effort to combine data-driven academic dialogue with an individual, story-driven component. He also filmed, edited, and directed the film They Go to Die, a documentary film-in-progress investigating the life of four former migrant gold mineworkers in South Africa and Swaziland who have contracted drug-resistant tuberculosis and HIV while working at the gold mine.
This post first appeared on the blog of AERAS, a not-for-profit TB vaccine development organisation. http://www.aeras.org/blog/recipes-for-survival#.UymNHfl_uSo