This week I received a call from Nozipho Mkoko (Musa Mkoko’s wife) informing me that Mr. Mkoko has been hospitalized with tuberculosis. Today, the Mkoko family granted me permission to share this news with you all. As many of you know, Mr. Mkoko is the only surviving miner from the film. His recent TB infection is an exogenously acquired infection of drug susceptible tuberculosis, and not reinfection of his previous multi-drug resistant TB.

At the end of this message I have listed direct ways to contact the Mkoko family, either with messages of support or other means of assistance. I have also posted a way to access an unpublished link to a clip of Mr. Mkoko from the film. I invite you to watch.

This news is extremely worrisome, and though the facts that he is receiving care in Swaziland and that his TB is drug susceptible mitigates some of the worry, we must also remember that there are intense mental and psychological effects of such a diagnosis. Though the treatment for drug susceptible TB is less intense, it is by no means considered a simple treatment; put crassly, one’s family would not be ‘relieved’ that they were diagnosed with a different form of cancer. As you can imagine, this news has been mentally and emotionally devastating to not only him, but also his family and community.

It is easy to assume that ‘care’ equals ‘cure.’ We are fortunate that the Swaziland Health Minister Benedict Xaba has greatly improved care and that access to medication is no longer a hurdle. But given his physical state — weak, emaciated — and that his TB is complicated by HIV, a favorable outcome is not guaranteed and is not even necessarily probable. This all too seriously highlights the continued battle that high-risk individuals have for contracting TB. Mr. Mkoko’s family will fight tooth and nail to ensure his well-being, just as they did during his last battle, and just as they would if they faced one hundred battles more, but he is weaker, older, and his lungs are lacerated from spending decades in the dusty mineshafts where he once worked.

If you are like me, you empathize with Mr. Mkoko and have the urge to want to ‘do something.’ But we should remember our version of the TB epidemic is not the same as Mr. Mkokos, however our epidemic is equally as challenging. As the family of Mr. Mkoko fights their own battles, we must realize that our fight is not in the dim lit homes of a Swazi house. Our role is not to change the wet sheets of a shivering father who has perspired through them, or in navigating public transport for a full day to secure a blister pack of pills. Our fight is to ensure that those fighting these battles have the tools they need to win; that the Global Fund is funded, that the research and innovation we need comes to fruition, that TB REACH is expanded, that the mines lower risk, and that data-driven policies that support patient centered care are rolled out. In continuing to fight the battles we face in our epidemic, we can ensure that future patients avoid illness and such physical and mental distress. Though being behind a lab bench or keyboard can often times seem distant, it is equally as important as being in the field.

The TB epidemic will not be overcome in a single broad, sweeping gesture — rather success will manifest itself in sustaining the countless individual efforts fought daily around the globe. It is up to us to define our own fight.

I ask that you keep Mr. Mkoko in your thoughts and prayers. He is one case out of the 8.7 million cases of TB in the world at present, but he represents the positive side of fighting an epidemic — that people can overcome incredible obstacles. He and his family are a representation of why we all fight to overcome TB.

If you would like to help the Mkoko family, you can do so in the following ways:

1) Email the family a message of hope and compassion. We have set up Mrs. Mkoko with a Gmail account that she can check periodically. Click here to email the Mkoko Family. (Or copy and paste: noziphomkoko@gmail.com)

2) Donate to directly support Mr. Mkoko’s care. We have created a special fund for the Mkoko Family. We are not soliciting funds per se, but this is indeed a tangible way we can help; sometimes defining our fight is as simple as sustaining the efforts of others. Click here to donate. (Or copy and paste: http://goo.gl/jQRCt)

3) If you are in Swaziland or southern Africa and would like to help directly, please contact me for their phone and address.

4) To access the clip, click here and use the password ‘mkoko.’ I will leave this up for about two weeks.

I am attaching a few pictures of Mr. and Mrs. Mkoko. I will keep you updated as I hear more.

Onward,

Jonathan

The global failure of tuberculosis (TB) programs has reared its head again, and the recent strain of totally drug resistant TB (TDR-TB) has assuredly caught the attention of every TB official around the globe. Instantaneously the murmurs of ‘what are the global implications,’ and ‘what do we do’ have arisen like gossip in a grade school playground.  It has stricken fear into the hearts of men, and threatens to terrorize global public health systems. Soon, it would seem, we will be poised for a biological massacre of poverty-stricken populations.

But this has been happening for decades.

In our deranged world of relative importance, where headlines and catchy names transcend basic public health necessities, it is not terribly surprising that we forget about uncomplicated, drug-susceptible TB. This acronym-less killer is responsible for more deaths on the African continent than any other natural disease, yet is allowed to run rampant throughout poor and forgotten communities. The result of this negligence is hundreds of thousands of deaths each year, but they are hidden in shantytowns and remote villages of the world’s poorest countries. Communities that we continue to turn our backs on.

It’s not that we can’t cure TB, it’s that we can’t cure TB for poor people.

“We live in a fabricated world where Band-Aid remedies allow the poverty-stricken patients to be out of sight and out of mind. Then when it arises, we carry out our half-hearted attempts to manage drug resistance in TB with baffling stupidity.”

Total resistance to TB has been present for decades, but instead of pathological resistance the culprits are apathetic governments, broken promises, paltry support for R&D, and non-functioning infrastructures that elude accountability. We have seen the resistant-TB hysteria before: first with the emergence of multi-drug resistant TB (MDR-TB), and again with extensively drug resistant TB (XDR-TB). Yet somehow, despite knowing the exact cause in resistance etiology, we manage to continue underfunding essential programs. We dilute accountability. We cut off international aid. We mirror the same ineptitudes that created these drug resistant demons. Inadequate diagnostic capability allows the unrestricted spread of disease, lack of capacity forces clinics to struggle with patient load and drug security, critical support is ignored, and political indifference allows all of this to continue with no accountability.

TDR-TD reinforces my claim that tuberculosis management should be deemed the largest violation of human rights the global health community has ever seen. We live in a fabricated world where Band-Aid remedies allow the poverty-stricken patients to be out of sight and out of mind. Then when it arises, we carry out our half-hearted attempts to manage drug resistance in TB with baffling stupidity. Quarantine policies plagued by limited bed space means that the vast majority of patients remain in the community highly infectious. Forcing patients to trek to centralized clinics creates an insurmountable logistical and financial barrier and localizes the specialized clinicians that should be in the community. Diagnostic systems remain a disaster. Quality of treatment remains a disaster. Drug supply security remains a disaster. Resource allocation remains a disaster. Management of TB remains a tragedy.

This is not to undermine the fact that novel efforts to address existing TDR-, XDR-, and MDR-TB cases are paramount to containing these epidemics – this importance cannot be overstated. Nor can the importance of research and support for new vaccines and better drugs, which need desperate funding and scale up. But today, on the ground, the only solution lies in basic public health. Left gutted, unfunded, and understaffed, TB infrastructures that remain substandard continue to allow countless deaths while hemorrhaging cases of drug resistance into the surviving population. Trial after trial, human rights based, patient-centered approaches to TB care have been shown to have tremendously positive results. Yet these successful programs, such as MSF’s work in Khayelitsha, South Africa, remain inundated with excuses from decision-makers as to why they cannot be replicated.

Given our wealth of technology, it is embarrassing that a curable, treatable disease has become the largest threat to public health systems in our lifetime. We allow our rhetoric and policies to fail with no repentance, remaining in a pitiful cycle with no signs of change. We fail to recognize that TB has transcended merely a medical disease and is one of poverty that must be addressed appropriately, including full incorporation of human rights. And every few years when a new resistant strain ‘surprises’ us, we pretend that we summon enough momentum for change, but in reality, we make the same mistakes with mind-blowing irrationality.

TDR-TB calls for novel strategies to stem this and other resistant strains, but should highlight how basic public health infrastructure could prevent resistance in the future. As exogenous primary infection of drug resistant TB rises, the world cannot afford to bicker in political offices. Lets put it bluntly: it will take more money, action, support, and far less rhetoric. But with appropriately directed, patient-centered methods, it can indeed be overcome. So lets get to work.

The question of forced quarantine in the context of tuberculosis makes for a lively discussion amongst us in the human rights arena.  Isolation creates the opportunity to ensure accurate and appropriate treatment, as well as monitor our patients’ safety, recovery, and general well being.  There is, however, an abdication of one’s personal rights in doing so: they give up their personal rights for the greater good of the population.  In most contexts, people will acknowledge their need for quarantine and do so willingly.  But it gets a little hairier when people refuse to give up their rights — when the question of forced quarantine comes in. Canada has recently shown us an exquisite example of how to completely screw this up.

“But the article vilifies her — such as needlessly pointing out that she is a sex worker — which allows the public to become more tolerant of this nonsensical deprivation of human rights. It also makes TB a ‘shady’ or ‘dirty’ disease.”

First off, the article is about a woman who refused her TB treatment in Canada.  This is a context where isolation, even forced isolation, makes perfect sense. It is an isolated case in an otherwise ‘unexposed’ population, and with a woman who is refusing treatment.  Most normal human beings will agree that this woman poses a threat to public health, and is a classic example of ‘public health over human rights.’ (that age-old debate). However, Canada’s province of Manitoba has a health act that allows the health officials to obtain a court order that places individuals such as this woman in jail.  When did jail come into the picture? What criminal act has she done? There is a vast difference between jail and forced quarantine.

Jailing unnecessarily deprives her of other basic human rights, such as watching TV or eating what she wants, and makes little or no sense as a public health measure.  But the article vilifies her — such as needlessly pointing out that she is a sex worker — which allows the public to become more tolerant of this nonsensical deprivation of human rights. It also makes TB a ‘shady’ or ‘dirty’ disease. Someone with TB that works in an office may pose the same risk to his or her colleagues; TB is in no way a sexually transmitted disease.  But she is instantly perceived as a social deviant and that allows many of us to assume it is ‘ok’ that she is jailed.  This is an incorrect thought process.

Why not forcibly quarantine her in a medical facility, where the vast majority of her rights will still be respected? She could even leave the facility under supervision (the risk of transmitting TB severely decreases after a few weeks of treatment).  Why not accommodate her needs and rights? Why not take a patient centered approach to her treatment, even if forcibly quarantined, instead of jailing her? Jailing will only push her away, enrage her, and galvanize her resolve not to finish treatment.  At least, thats what it would do to me.

A patient centered approach and forced quarantine are not mutually exclusive. Once we start associating criminalization with naturally-acquired disease, we are on the wrong path.  She is a patient, not a criminal. And a patient-centered approach is what we need in this case.

The odd paradox here is that this IS an isolated case, so we have more than enough means to tailer the treatment around her needs.  Even the most belligerent, hard headed person (which other accounts described her as) deserves to have her rights respected.

Canada has now set a precedent for other countries to do the same — other countries where forced quarantine may not make the most sense (i.e. South Africa, where TB runs rampant and there are no resources to quarantine everyone).  Again, this is a perfect example of public over human rights, and a perfect example of how to screw it up.

Clint Smith’s complete piece in the film They Go to Die

View Post for Lyrics!

Do you know what it feels like
to have a machete taken to your lungs?
To hold a drill in your hand for so long
you forget it’s not a part of your body?
To work in a place where light
at the end of the tunnel,
is more than just a figure of speech?

Welcome to the mines

Where men work so far underground
that sunlight is manufactured
from headlamps and golden soot.

Where the sounds of breaking bodies
are drowned beneath a cacophony
of hallowed coughs and hammers.

Where disease, festers in the air
as if the earth
were holding a grudge
against mankind for failing to keep her secrets.

In the South African gold mines,
the reality of tuberculosis
can make every breath feel like a death sentence.
The toxic dust from million year-old rocks
like a swarm of dancing landmines
along the walls of your ribcage.
A bombardment of bacteria
crawling through your throat.

Tsunamis of silicosis and sweat
crashing against shores of black backs
like a crystalline whip—

So these men,
with cobblestone skin, jackhammer hearts
and jawbones clenched like redemption—
Expose themselves
to a world of disease and degradation
unlike anywhere else on earth.

How ironic,
that the industry responsible
for the success of South Africa’s economy,
is also culpable for a pandemic
wiping out thousands of its people.

These are the consequences of corporate indifference.
Where executives unwilling to part ways
with a pocket change percentage of their profits,
enable illness to run rampant
in a community they’re supposed to protect.
With golden clocks hanging in their offices like stolen halos
they refuse to provide real care
for the very people who created their wealth.

So why would anyone subject themselves to this?
But what choice does a man have
when he has to feed his family?
When jobs are as scarce as roses
on a crumbling battlefield.
When he knows his wife and children can’t survive
off of unfulfilled promises.

So he puts on his hard hat,
turns on his light,
and marches miles beneath the earth
amongst flocks of brown faces.
With no choice but to pummel
his heart against the walls of this mine
as if he were searching for his dignity.

And when the miners are deemed too sick to work,
they are simply sent home,
Like disposable human tools
that have lost the sharpness of their edges.
With HIV and tuberculosis cascading
in a spiral-bound pirouette through their bloodstream.
Fathers falling into the eyes of their children,
praying they wont succumb to the same fate.
Lying on deathbeds made of debris and lost hope
Screaming, at the top of their lacerated lungs.
Ngiya gula!
Ngi khatele!
Ngiya fa!
I am sick!
I am tired!
I am dying!

Imagine your father, choking on the inevitabilities of his past.
Your mother, widowed by the misfortune of other people’s apathy.
Your brothers and sisters, settling for a future that seems all but inescapable.

How much longer can we watch
while generations of black men are cycled
through a system that treats them like dirt.
How much longer,
can we simply watch them,
sent home
to die.

There are a lot of public health mysteries; countless diseases have layers of complexity requiring a sophisticated knowledge of epidemiology.This is not one of them. This is basic public health. And this is a public health disaster.

For context of this article, a precedent-setting case for South African miners was won on March 3rd 2011. In short, in a surprising decision by the Constitutional Court, the recent overruling of the Supreme Court of Appeal’s judgement made in 2008 has broken ground for thousands of former miners stricken with the deadly diseases of tuberculosis and/or silicosis to make direct claims against their employer. Now, eighteen former mineworkers are taking Anglo American South Africa (AASA) to court, claiming they developed silicosis and tuberculosis from prolonged underground exposure to silica dust.

“You can pre­dict where minework­ers pri­mar­ily migrate from based on the level of wid­ows in the com­mu­nity. Does any­one else find this com­pletely absurd?”

And as if Hollywood scripted the setting, the former AngloGold Ashanti worker in the initial case, Thembekile Mankayi, tragically died six days before the monumental ruling due to complications with silico-tuberculosis But Mankayi is not a martyr, actually far from it. The only difference between him and tens of thousands of mineworkers every year is the fact that his death was noticed.  The methodical exodus of these deathly ill, highly infectious men has been practiced for well over a century, but these deaths are hidden in the crevices of Africa — far from the courtrooms of Johannesburg.  These deaths are equally as painful, however, and even more devastating to the families of these workers.

I will cut past the human rights talk. The importance of this transcends the obvious human rights violations and one does not even have to discuss ethical considerations to support this ruling.  Plus, I need you to pay attention, this is important. I am interested in public health — it is not about who is good, who is bad. This issue, quite simply, is about public health. I can’t say that enough.

This persistance of this issue is quite frankly ludicrous. We are literally running out of public health statistics to throw at it.  Lets put the issue of individual rights and health aside for a moment and focus on the impact this has on the general population.  Up to 760,000 incident TB cases can be attributed to the circular migration of these men (Stuckler, et al) and countless other statistics prove that mining is not only dangerous to individual health but to the community as well. You can actually gauge the extent of mining activity in any sub saharan country based on its incident TB rate in the general population. You can predict where mineworkers primarily migrate from based on the level of widows in the community. Does anyone else find this completely absurd? Can you imagine in the U.S. if there was an industry directly responsible for a disease in the general population? I can say with full confidence that it would not take 107 years for a lawsuit to be won. Remember Andrew Speaker? Probably not, but he was the U.S.‘s MDR-TB patient that flew to Europe a few years back to make sure he got to his wedding.  He got on a plane and the entire western society went into hysteria.  He was hit by at least 8 lawsuits that combined for $1.3 million from passengers — none of which were even infected. This happens thousands of times a year in the mining industry, but these men are more infectious and live in cramped, squalid conditions where disease can more easily be transmitted. This is a public health problem of considerable dimension.

The above mentioned paper continues to state, “comprehensiveTB control strategies should explicitly address the role of mining activity and environments in the epidemic.” The general population of South Africa will never overcome their TB epidemic, one of the largest in the world, if nothing is done to stop it at its primary source: the mining industry.  As South Africa’s Minister of Health Dr. Aaron Motsoaledi so eloquently states, “If TB and HIV were a snake, the head would be in South Africa, in the mines. Mineworkers come from all over the subregion to fetch TB and HIV and take it back home. We are exporting TB and HIV.”  Any public health initiative that seeks to lower TB in the general population will be seriously undermined if it fails to address the mining industry’s impact on the epidemic.  We don’t need more statistics, more rhetoric, we need action. If there is any health issue that public health officials can pick and be able to win (and there are only a few of these, mind you), it is lung disease in the mining industry.  The resources are there. The means are there. Its a controlled environment.  The infrastructure to enforce checks and policies are there. Everything is there, already in place.  The past century has been plagued by political and financial decisions that have directly resulted in this epidemic, but this is in no way insurmountable.  Silicosis is an occupational hazard that can be significantly reduced given the political and financial will. Tuberculosis is easily preventable and curable with drugs that have been used for decades. It is increasingly frustrating to think about how absurd this situation is, and how easily steps can be taken to fix it.  These court rulings are examples of the steps we should be taking, and provide some comfort in those of us who are fighting this battle.

But as public health people, what we have to understand is that we don’t just need the public health understanding and realization of this issue. Its there, trust me.  Every public health official with a mother has commented on the issue and damned it to hell and back. We need help. In order to address this we can’t just keep regurgitating numbers and suggestions. We need to understand that this is a multidisciplinary battle that must be approached both politically and legally.  This ruling will not only provide the mineworkers with financial resources to obtain the critical medicines they need, but also further influence policy and action to be taken on this issue. Mines will begin to seriously consider their dust level reduction and TB programs, because quite simply, they wont be able to afford not to anymore. The decisions in this industry have always been made on a financial basis, and allowing mineworkers to sue their employers for direct negligence will directly force the mines to consider this issue. The support of these cases is paramount to overcoming the challenge that lies ahead.