Tuberculosis in Romania

I thought tuberculosis had disappeared.

Honestly, seriously, I thought it was one of those diseases that was from the era of Ellis Island—one of those illnesses that would get your coat marked with chalk as you waited in line to enter America after a couple months at sea, one of those sicknesses that made you unfit for entry into the country for fear of a public health crisis.  I thought it was a disease only of the past, of the era of the plague and smallpox and yellow fever.  I thought it was eradicated.

It’s not.

Last week, a Ph.D. student from New York, Jonathan Stillo, came to our sustainable development class and delivered a lecture that’s still making my head spin.  He’s been studying tuberculosis (TB) in Romania for his doctoral dissertation as a medical anthropologist, and thus has been in and out of the country for the last decade, spending time at sanatoria across the country, talking to patients and doctors, learning more about the epidemic which is wracking lungs across Romania—an epidemic that no one will talk about.

There are about a dozen sanatoria in Romania, most of them remote, isolated from society atop mountains “beyond the sight of God.”  Jonathan described the road to one particular treatment center as treacherous, filled with potholes, impassable in the winter, winding in a series of wicked switchbacks up the side of mountains inhabited by bears but not by people.  Most of the people who work there live there—it’s impractical, if not impossible, to commute.  Few patients get visitors.  There’s only one maxi-taxi a day, and it’s expensive.  Plus, who’s going to spend a full day traveling up a mountain to visit a place full of patients with a disease that no one wants to admit they have?

Tuberculosis is a social disease.  There are economic and social conditions that predispose you to getting it—namely, poverty.  Malnourishment, overcrowding, high stress: all conditions of poverty.  All of them also will reduce your body’s ability to fight off TB.  So tuberculosis is a disease of the poor—but it’s not only a disease of the poor.  It’s highly contagious (so contagious that if you’re found to have TB in the United States, you will be locked in a hospital for months until you can’t pass it on), so rich people can get it too.  Back in the States, that’s less common—but in Romania, many of the patients at the sanatoria are taxi drivers, nurses, teachers, lawyers.  Not people in poverty.

We’d read Mountains Beyond Mountains in preparation for the class, a great book by Tracy Kidder about a medical doctor and anthropologist named Paul Farmer who’s doing great work with tuberculosis in Haiti (and all over the world, but for the sake of simplicity, we’ll leave it there).  Farmer’s inspirational.  The book will make you angry, and make you sad, and probably make you feel guilty—and that’s as it should, because he gets it.  He cautions against the “immodest claims of causality” that anthropologists like to make—those exotic cultural habits that make foreigners seem ignorant, seem like the cause of their own problems.  He does more than caution, actually—he fiercely berates that practice, calling it ignorance in its own right.  Instead, he reminds us, there are political, economic, and social realities that are the real problem behind global health epidemics and poverty.  These are the real issues.  And it’s our duty to amend them.  It is our responsibility to create a “preferential option for the poor.”

And he’s right.  Looking at Romania (especially while living here) my heart jumps to my throat and I wish, for a while, that I was pre-med.  I want to help, you know?  I want to go to the sanatorium, to the hospitals, be a doctor who’s not corrupt, nurse people back to good health.  But that’s not my place.  That’s not my calling.  I’m an international relations major.  I have a good, solid understanding of the role of politics and economics and sociology, and the ways those things affect poverty and health and, ultimately, human life.  (Or at least, I hope that’s the understanding I’m developing!)  And that matters too.  It matters a lot, actually.  Let me try to explain.

Health outcomes in Romania are the lowest of any country in Eastern Europe.  They have the lowest life expectancy, higher rates of tuberculosis, etc.  But, Romania also spends only about three percent of its GDP on healthcare, which is clearly not enough.  In this case, you get what you pay for… which is minimal.  Although under communism, countless hospitals and clinics were built across the country, they’ve fallen apart, many of them dilapidated and under-staffed.  Doctors don’t get paid enough here.  It’s only going to get worse, with the financial strain of IMF policy causing a 25% cut in pay throughout the public sector—so the corruption that’s already prevalent in the medical system is only going to increase, as doctors still need to feed their families.  People here don’t go to the doctor if they can help it—they go six times less often than people in the Czech Republic, another former socialist country that’s fared a lot better financially in the years of recovery from communism.  And if they do go, it’s usually not until late—until the symptoms have become unbearable, and they’re suddenly coughing up blood. 

No one wants to hear that they’re sick.  But especially, no one wants to hear they have TB—and especially not in Romania.  There’s a huge social stigma against it here.  Many people will describe it as a “lung disease” rather than name it.  They’ll blame the coughing on years of smoking, and they’ll try to hide their symptoms, rather than seek treatment—even though TB treatment in Romania is free.  Better to hide it than to face being ostracized by the community, anyway—because that does sometimes happen.

But when people finally are diagnosed and given treatment, a new set of issues emerges.  First of all, there’s the issue of the treatment itself.  Sometimes there will be a shortage of drugs in Romania, often for unknown reasons.  Simple miscommunication or corruption, perhaps, but regardless, it disrupts patients’ treatment cycles and makes the already-awful side effects even harder to deal with.  Tuberculosis treatment (especially under the World Health Organization’s DOTS program) is extremely regimented, with big handfuls of pills every day for months on end.  If it’s missed, the bacteria—which is highly evolved, since tuberculosis is the oldest disease known to man—quickly evolves into a drug-resistant strain.  Most MDR (multi-drug resistant) strains are almost impossible to cure, involving long-term treatments with expensive drugs that produce terrible and frightening side effects.  But MDR-TB is becoming more and more common, especially as the first round of treatment options fails on patients due to such simple causes as an interruption in the drug supply.

But there are other issues involved in treatment as well.  Sanatoria, a seemingly-outdated method of care for infectious diseases like TB, fill a social welfare role in Romania that increases the difficulty of really helping and healing patients.  There really aren’t homeless shelters or nursing homes here, and many of the patients who, in the States, would be serviced by such places, are left without options in Romania.  Some patients will skip drugs on purpose to set themselves back in their treatment, because they know that if they leave the sanatorium, they have nowhere to go.  It’s not fiscally responsible at all to keep treating these patients in sanatoria—they’re high-cost centers, far less economically efficient than a nursing home would be.  But because none of those social services exist, doctors keep patients longer.  In the words of one such doctor, it would be ‘against her Hippocratic oath to ‘do no harm’ to let the patient leave’ without having a strong support network in place—and that’s often entirely lacking.

The issues go on and on.  It’s a troubling issue, full of nuance, but also—in the eyes of people like Paul Farmer and Jonathan Stillo—strikingly black and white.  People are sick?  Treat them.  It costs too much money?  Treat them anyway. 

But the root causes remain unsolved.  Thankfully, Jonathan agrees with Farmer: to merely study the epidemic and do nothing about it would be futile—in fact, it would be wrong.  Observation alone is impotent.  Documentation isn’t the point.  From objectivity we’ve got to move to activism, to taking the step of asking how to better the situation.  I don’t want to end this post on a cheesy note, but I do want you—whoever you are, reading this—to think about it.  If nothing else, read Mountains Beyond Mountains.  Begin thinking about how to control Adam Smith’s invisible hand.  Begin thinking about liberation theology.  Begin thinking about the issues of development, of the troubling connection between a 41% poverty rate in Romania in 2001 and a skyrocketing TB rate here in 2003.  Begin thinking about the fact that over 60% of the patients in the sanatoria never receive a visitor.  Begin thinking.  And let it move you to action.