Office Work

And a lot less of this:

Dancing with an American Flag

For the past couple weeks, I’ve been writing a Knowledge, Attitudes and Practices (KAP) survey in relation to tuberculosis. Our theory is that even people with tuberculosis do not know a lot about the disease. A lack of knowledge can lead people to not take care of themselves in the way that they should, to abandon treatment, or–perhaps the most common–stigmatization of the disease. These survey tries to address these themes with mostly quantitative and little bit of qualitative questions . A question may read “How is TB transmitted to other people?” And you’ll get a lot of wrong answers such as “using the same plates” or “by blood” or “by kissing.” In fact, the only way TB is transmitted is through air.

Okay, so you have the survey. What then?

The point of the survey is not to stroke our own egos and prove the theory correct (As I feel a lot of academic research does). But rather to do two things: to show the Peruvian government that “hey, there should be a little more focus on educating TB-affected people during treatment” and to provide a baseline measurement for any education intervention that would follow. Too many poverty-fighting projects start without a baseline to work with and really, without accountability if the project does fail. Thus, it is hard to say whether the project was successful, whether it should be repeated, and how to fine-tweak it. Those are things we’d like to be able to do. J-PAL is an exemplary organization that demonstrates how to carry out programs to fight poverty with measurable and accountable results.

So with the survey-development work almost finished, I’ll be off to the field for the next few weeks: knocking on doors, talking to TB-affected families, crunching numbers, and squeezing my tall frame into lots of these:

Mototaxi used to get around Pisco

An example of house people now live in after the earthquake

I’ll understand that they don’t completely trust me right away.  After all, when’s the last time I willing answered the questions of  people who have appeared at my door and stated their good intentions?  That’s where the joke comes in.  Maybe it’s about my height.  If there is a little girl in the room, I’ll ask her what her age is and then claim to be five-years-old as well–always good for a shy smile.  And there’s no better way to get mother to open up than to show your care for her kid(s).  All I really want to do is show the patients that I care about them; that I’m not just there to fill out some stupid form and leave as fast as possible; that I’m interested in what they have to say.

If I’m successful in getting a person to open up, instead of hearing that she’s bored all day at home (because TB patients can’t work because of treatment), I get her to tell me that she hates being alone for three days at a time, waiting for her husband to come home from a fishing expedition, only to have him mistreat her.  I get her to give me the details of how she wishes her family, who lives ten hours away, could come see her but they can’t because she might give them tuberculosis.   I get her to tell me that she cried the entire first week after she found out she had tuberculosis.  Then I can recommend her to the women’s advocacy center in town.  Then I can use her family as motivation for her to continue with treatment.  Then I can recommend her to a psychologist and to group therapy.  Then I can do what I came there to do: provide support for her outside of the medication which she receives in the health post.

This approach is one which I take on an individual level, but it also can be extrapolated to a community level.  Do you care about the people of the community?  Or just the disease which you are trying to treat?  Why should the community welcome an organization whose goal is not centered around its people, but instead centered around appearing to good?  PIH uses TB treatment as a method for entering into the lives of the community, but from there, once we’ve gotten through the door, we direct our efforts and care toward the entire community.

Case 1: Susceptible TB

José started his treatment a month ago.  Everyday he goes to his local health clinic down the street to take his pill-cocktail.  He got diagnosed with TB when he was hospitalized because of the TB effects on his lungs.  It had spread to his extrapleural tissue.  Before he was hospitalized, he was working as a painter.  He can’t work now, because the treatment makes him weak.  More than that, ever since he started treatment, he has gotten a fever in the afternoon.  He has tried numerous times to see a doctor about this, but he has yet to successfully see the hospital’s doctor. His wife cannot work, because she is nearly blind from glaucoma.  His daughter is studying, but might have to drop out because they can’t afford to pay the fees for school.

Daily dose of TB drugs: Isoniazid, Rifampicin, Pyrazinamide and Ethambutol

Case 2: MDR TB

MDR TB is labeled as such because it is resistant to the two most common and effective first-line drugs: Isoniazid and Rifampicin.  Patients with MDR have a treatment that lasts anywhere from 18-24 months.  Juan has MDR TB.  Before he was diagnosed with TB, he was a tour guide for the Paracas nature reserve.  He has been receiving treatment for 6 months.  Which consists of daily injections of the second-line TB drugs.  He has got injections in his legs, his butt, and now he is getting them in his arm.  He has had several negative TB tests, and he hopes to change treatment from receiving shots to taking pills.  He says he doesn’t mind the shots (although the way he says it makes me question if he’s telling the truth), but the  dolorous side effects causing his legs to feel heavy and immobile is what he can’t stand.  But in order to be approved to leave treatment, he needs a doctor’s approval, and he has been waiting all month for his appointment, which he has this week.  There is no guarantee that the doctor will say he can change his treatment.  If he has to continue with the shots, he might abandon treatment.

Case 3: XDR TB

XDR TB, extremely drug resistant TB, is resistant to Isoniazid and Rifampicin, as well as several second-line drugs.  The cure rate for XDR is much lower than MDR, but it is still curable in some cases and treatable in all.  Miguel has XDR TB.  He has been in chemotherapy treatment for his TB for the last five years.  And he is still not cured.  The drugs are fighting the TB, but they can’t kill it.  He is weak and in a wheelchair–more so because of the drugs  than the TB.  He is mostly deaf, and has communicates by writing.  All these side effects are because his TB is resistant to the drugs with fewer side effects.  He had know choice but to take these damaging drugs.  His mother takes care of him, and for now, the government is still providing treatment for his TB.

I tried as best I could to represent these cases as I see them.  I try not to make them worse than there are, and I do not want them to be looked at as pity cases, but rather a snapshot of reality for three people with TB here in Peru.

Why aren’t there better drugs?

Well, TB is particularly tricky disease, different from normal bacterial infections  so simple bacterial drugs don’t work.  If you want some more in depth biology, check out the wikipedia page.  But also, Tuberculosis is largely a disease of the poor.  In the past, there had been little research money dedicated to the disease, because who would pay for the better drugs that can cure TB faster with less side effects?  In recent years, partly because of PIH, TB has started to get more publicity.  There is now a greater push from organizations such as TB Alliance.

Also interesting is perhaps the most important discovery I’ve ever seen: A self-replicating synthetic DNA cell.  This may not mean too much to you non-science folk, but I think with this achievement, the possibility for vaccine development is wide open.  We can now explore the possibilities of developing a vaccine that evolve to combat a constantly-mutating disease, such as TB.

A photo outside the restaurant with me and two nurses. This was taken to show my height.

After lunch, we went to La Huacachina, an oasis that has been so built up, it reminds me of Niagra Falls. People are climbing the sand dunes, sand boarding down them, taking dune buggies. It is a cheesy attraction, but it’s pretty nonetheless. To see trees growing in the middle of the desert is cool. The patients were taken out in row boats, which most , even though they live next to the ocean, don’t have the opportunity to do.

La Huacachina

And so went the day. But more than the sites we went to, the best part was giving the patients an opportunity to relax, away from the harsh poverty in which they live. Who doesn’t need a vacation?

Laguna Grande is a small fisherman’s town 2.5 hours drive from Pisco, its nearest city.  Its population varies according to the fishing season, but around 500 people are permanent residents.  The directions to get out there are as follows: stay as close to the ocean as you can, past the rock that looks like a turtle (Land Before Time, anyone?),try to find sticks  jutting out of the sand.  Sometimes we had to stop completely to just spot the next marker in the desert.  Twice we had to back track because we had gotten lost.  It was a pretty hard place to navigate, but we finally made it.

Fishing town, Laguna Grande

The purpose of our visit was to visit the government health post in Laguna Grande.  We greeted the nurse–one of only two that worked there.  We chatted for a while about how things were going.  Most of her patients are seasonal migrants, only living in Laguna Grande for part of the year.  They hadn’t seen a TB patient in ten years.  But they can’t really do tests for TB because they don’t have a fridge.  They also have no way to do tests for HIV, but she said she has seen symptoms of the disease in some of here patients.    They also have to import all of their water from Pisco.  A 2.5 hour journey, just for water.  The government gives the health post a monthly ration of water, but it is hardly sufficient.

Laguna Grande's Health Post

Laguna Grande is a geographically isolated community.  Many questions come to mind in this situation.  How can a health care facility not have enough water?  And no fridge?  Well, part of our goal in the next coming months will be to work with the  government to see that a fridge arrives, sufficient water is supplied, and HIV tests become available.  Our commitment is to providing the community with  sustainable sustainable structural development.  We will work  with the fishermen, with the nurses, and with–not around–the government.

Partner’s In Health’s slogan is a preferential option for the poor in health care.  They target underserved populations, much like many other health care non-profits.  So what’s different about PIH?

The difference is in how they define “health care.”   It is not simply that they give medicines to people without explanation, expect them to be cured, and then leave the community (like what  happened during the much acclaimed WHO’s Smallpox Eradication Program).  Health care to PIH is the mental well-being of their patients.  Health care to PIH is giving out baskets of food for their patients that are too weak to work.  Health care to PIH is delivering beds to patient’s homes so that they can sleep well.  Health care to PIH is ability of their patients to lead lives that they can be proud of.

Socios En Salud (Partner’s In Health in Spanish) works towards this definition of health care.   That is why they have microfinance program with zero interest loans.  I’m down here working with that program, that is in no way a sustainable program (because of not charging interest), but is nevertheless successful at helping the people who have just finished TB treatment in a way that a sustainable program couldn’t be.  These people take loans, and pay them back in monthly installments.  The money that they pay back goes into a socioeconomic fund, which is then used to provide support such as food baskets or beds.

If we give people treatment for one issue, but fail to address another, what is it we really care about?  The issue we treat, or the people?  You can’t solve every issue, but you can sure try to care more for the people you are treating than the issues you are treating.

A street in Pisco after the earthquake in 2007

Next week, I’ll be heading to Pisco, a town of 100,000 that was destroyed by a 2007 earthquake that was  stronger than the one that happened in Haiti this past January.  As most of the town’s structure and industries crumbled along with its buildings, there is dire need for economic opportunities.  We’re hoping to start our microfinance program down there.  Hopefully I’ll have some cool experiences to write about.  But more than that, hopefully we can work with the people so they can continue on their never-ending road to recovery.

(For those who are wondering why we are having so many earthquakes these days, I happened upon a neat little explanation)

My volunteer friends and I were going to see a Cumbia concert (Peruvian Cumbia is a mix of Pop and Latin music that everyone here is obsessed with).  After bartering for a few moments, we decided that we had a reasonable fee, and we wanted to just get to the concert.  The fee was 28 soles (Peruvian currency, about 10 dollars).  We told him we were going to a place near the Megaplaza.

While conversing, we told him we were Americans.  He asked if we were Christians, we told him no.  Our conversation was short, and in our opinion, he was a bit rude.  But that happens with taxi drivers and it’s no big deal.  We ended up driving a little past Megaplaza, by about 1 km.  When we got to our destination, the driver asked for a little more money because we had passed our stated destination.  This is a common taxi tactic: They ask for a landmark, and then when you don’t go exactly to the landmark,  they attempt to charge you extra.  Usually, I don’t give them anything, but this time, we gave him 30 soles just to make it an easy payment and avoid asking for the two soles back.

The extra two soles were apparently not enough, he wanted an five extra.  To which I responded that we were not going to pay.  If I were by myself, I would have gotten out of the car, and that would have likely been the end of it.  But, my friend wanted to avoid an argument, so she wanted to pay.  But she didn’t have the money.  Which led to me arguing with the taxi driver for a couple of minutes while waiting for my friend to get out.  This was the opposite of the intended effect.

Right before she had gathered up her change to pay, the agitated taxi driver implored me “But this amount of money is nothing in your country, it’s only 10 dollars.”  And that’s when I really got upset.  But my friend was paying, so I we got out, and I was left to stew on it.

I don’t mind the extra haggling, nor the extra haggling because we are Americans, but it was the incessant rudeness which he demand his money because we were Americans that bothered me.  And we knew it was unfair.  But it does beg the question, just because we can pay more, should we pay more?  Is it right for places to charge foreigners more for things?  I like to consider myself more than a tourist, I am a person  who lives in Peru.  I don’t feel I should pay more for a taxi than a Peruvian does, but in the end, the taxi driver probably needs the money more than I do; however, he should not feel entitled to it any more than I feel entitled for my opportunities because I’m American.

Conversely, I would argue that those who can’t afford to pay should pay less than those who can.  My job here, for example, is dedicated to giving a preferential option for the poor in health care.  That is something I believe in.  And maybe if I thought that the taxi driver were in the business of giving a discount poor people, which was covered by his taking advantage of foreigners, I wouldn’t have minded.  But I doubt that was the case.

Probably their first large-scale policy change came in their treatment of multi-drug restistant tuberculosis (MDR TB) in the mid-nineties.  The World Health Organization’s (WHO) official stance on MDR TB was that it was not cost effective to treat, and did not pose a major threat (potentially because those who had MDR TB were dying without treatment).

PIH’s contacts in Peru begged to differ.  They knew many people with MDR, and they knew it was spreding rapidly throughout  the marginalized areas of Lima. So they went about studying and treating a group of people with MDR TB, the largest cohort ever treated up to that point: 10 patients.  And they found cure rates better than those in the United States.  They were able to barter with drug companies to lower the prices of MDR TB drugs and, in 1998, change the WHO’s policy on MDR TB.  Furthermore, they have been working with Peru’s Ministry of Health to have them adopt their MDR TB treatment program nationally.  In March, PIH in Peru held the a week-long conference training the WHO in TB treatment.

Yes, so they’re kind of a big deal. But the idea behind their success is not revolutionary. They use community health workers.  What that entails is training members of the community to visit patients, make sure they take their medicines, and provide them with support.  This idea works so well because these health workers have either been patients in the past, or have had someone close to them who has had to get treatment for TB.  They know what it’s like to take medicine every day for 6 months, or in some cases of MDR TB, a year and a half.  They know what the patients are thinking and feeling.  They know what the community needs and have ideas how to help with that.  They know it’s worth it to treat patients. They are not doctors, nurses, or statisticians from outside, but people who have grown up their entire lives walking the same streets that they walk to visit patients.  They can’t meander five minutes through the community without getting stopped and asked for help.  And they do help.  It is because of this community-feedback mechanism that PIH has developed it’s mission of integrative health, a topic which I will touch on next week.  But just so you know, these big policy changes and idea shifts did not come from Paul Farmer, they came from people in the community.

I heard shots being fired. I saw a helicopter arrive on the beach (at least we were at the beach). I saw tear gas fired. I saw tires burning. I saw 5 buses pass through that had been at the front of the strikes, their windows smashed as concerned Peruvians looked through the broken glass. Thankfully, I was not near the front. Then we heard rumor that some miners had died. The protests had just been moved up a notch. I could see armed military men standing on top of the police station. We would have turned around, but around 100 km behind us, there was another blockade. So we were kinda stuck. The miners never wanted to hurt us, but they did want to make their voices heard. I was never in trouble, just uncomfortable and on edge.
We decided to move 5 km back to a what I would call a trucker stop. Along with about 20 other coach buses (1000 people) we cleaned out the restaurant, the food, and desanitarized the toilets so you couldn’t go to the bathroom without holding your breath. We were in the desert, next to the ocean. I went to bed having eaten one meal that day, but having stocked up on plenty of water. I went to bed calmly, knowing the miners would not come to where we were. I went to bed almost positive that in the morning, we would be on the way to Lima.
The next morning, things started getting ugly, people were screaming at each other about what to do. The bus company wanted to just wait it out. There was not food. Only a small portion of cheese for children. Our bus collectively decided to go back to Arequipa. Some people couldn’t afford to go back and pay for another ticket, so they decided to wait it out. The place was a disaster–no clean toilets, no food, hardly any water. Unfortunate that people were forced to stay there (voluntarily or not). There was no news as to when the blockade at Chala would stop, but it was rumored that things were ugly there. On the other had, it wasn’t clear that we would actually be able to make it past the blockade that was behind us, but we had heard that other buses had made it through the less severe blockade of only 3,000 miners, and no deaths.
We made it back, with only a 45 min stop at the other blockade, and relatively peaceful passing.  Seven hours later we, were in Arequipa. And thus ended my over 48 hours on a bus. We went to the airport, where the government was giving out free military flights back to Lima for those who had been on buses. Why was the government was investing their money in that, rather than in quelling the protests? Well, they didn’t want to give into the miners demands. And they decided to just wait it out. So Monday night, at 12 in the morning, I got on a Peruvian air force plane and flew home. The main reason I got a flight so rapidly, was because I was American. I felt bad.  So did the other volunteers, and two of them stayed behind, to wait there turn in line. I felt it was a situation that did not have a correct response. Any Peruvian would have lambasted me for giving up my opportunity to go home. Yet I didn’t feel it was right. I wanted to stay. Then I started thinking about what would happened if I stayed. Well, I would probably just be getting on a flight the next morning, in front of some other Peruvians, and still feel bad. Really, there was no right answer. I got my house at 3 in the morning, and crashed.