With only a month left in Peru, I find myself as busy as ever. Additionally, since the World Cup has ended, I have been doing a lot more of this:
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:
If it hasn’t already been mentioned within the first two minutes, I usually start the interview off with a joke about how tall and awkward I am. A joke that has been well received wherever I have traveled. Nothing like good physical humor to make up for my inadequate language abilities.
Most of my day-to-day work in the field involves doing a socioeconomic assessment of incoming TB patients. This involves about 45 minute interview in which I insert myself into their living situation, their education, their family members, alcohol abuse, monthly income, and health history. Their personal life is my interest, and I need them to want to share it with me.
The newly diagnosed TB patients are usually in a state of disbelief that this could happen to them–that is, if they don’t already know someone with TB. Most don’t know what to expect during their treatment or if what they are feeling is normal. That’s when I show up to explain that I’m from the health post and want to do an interview with them to see if we can support them in addition to the medication they already receive (with extra food or an extra room with good ventilation perhaps). This explanation and their fragile desire to learn more about their disease is enough to get me in the door. But that’s the easiest part. Getting the information is the challenge.
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.
TB treatment is bad. It’s hard on you. It’s hard on your family. It lasts six months. You have to take a cocktail of pills everyday for at least the first two months. The pills make you weak and unable to work. And that’s the most amicable treatment for regular TB. There also exist longer, more arduous treatments for MDR TB and XDR TB. Here I profile three cases of TB treatment which I’ve seen (The names have been changed to generic Spanish names to protect the patients).
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.
The patients in Pisco whom we work with are poor. Most don’t have the money, let alone the time, to take a day of travel for pleasure. This weekend, we took a group of patients and their kids to various attractions around the Ica area. One patient said to me, “The only time I have been to Ica, is when I was hospitalized because of TB, and need surgery.” For you Michiganders, that’s like living in Ann Arbor all your life and never visiting Detroit.
The patients we brought were participating in group therapy sessions in dealing with TB treatment. TB treatment is a long, taxing process that can last anywhere from 6 months to two years. As you can imagine, taking daily medicines that have debilitating side effect can be mentally tough. Add to that the stigma from the disease–which is still a huge problem–and you get a disease that attacks the body and the mind. PIH has group therapy sessions with current and former patients to help work through these issues.
Saturday was a day of fun. The patients, their kids, the PIH workers, and the government health employees piled into a bus to go from Pisco to Ica. First we stopped at Ica’s town square. Taking pictures in front of the fountain and enjoying the sights. Next we went to tour a bodega, a winery. I got to play with the kids a bit while the adults tasted some sweet Peruvian wine. But when I was chasing one kid, he fell down and scraped his knee. The next day, he claimed he fell because he was scared of me because I’m so big.
Later we had duck at a nice restaurant. And when eating meat in Peru, they don’t typically give out knives. So it was a fork-and-hand-to-mouth process. To those who know me well, this form of ingesting suits my style of eating better than the “more civilized” form.
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?
When I think of rural poverty, I imagine lush, mountainous countrysides with windy dirt roads. And that’s pretty much what things looked like along the coast of Peru. Except there was nothing lush, and the mountains were made sand instead of rock.
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.
As you may know, it was Easter this weekend. Which means everyone in Latin America takes Thursday and Friday off. The other volunteers and I decided to go to Arequipa, a 15 hour bus ride to the south. It’s known as Canyon country. I spent Friday and Saturday hiking, climbing ruins, seeing condors, and seeing the second deepest canyon in the world. It was a lovely extended weekend.
Then came the fifteen hour bus ride back. We made seven hours of the journey. We stopped at two in the morning, and did not move for the rest of the night. I saw lines of cars around us, so I knew we were not in trouble. If we had been reading every piece of Peruvian news, we would have known that the miners were planning on striking; however, we had not been up to date on the current events. We woke up in the morning to find ourselves in a line of buses, filled with people like us, trying to get back to Lima after the holiday.
We were in Chala, a small finishing/mining town. We learned why we had stopped. The government wanted to legitimize an illegitimate mining industry, meaning creating environmental restrictions, and, presumably, taxes. It was seven in the morning, the word on the street was that we might get through the blockade by 1pm. And by blockade I mean 8,000 miners blocking the road, with only 500 policemen.
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.
I am the visitor. I am from Kiva. I am Jeremias. This has been my introduction for my first days in Guatemala.
Tueseday, we went to San Martin. It is a two hour drive from Guatemala City: thankfully it was Marco and not me who was driving so I could observe the scenery as we passed through beautiful rolling hills covered in forests. In the distance we could see small peaks, and each one was covered in trees.
Once we arrived, we were greeted by Bertha Carmelina Tohon, who just finished fundraising on Kiva. She gave us a warm welcome and insisted that we have tea before we leave her comedor (eatery). She was not shy to share her life story. I quickly learned that her kids attending college, one studying psychology and the other chemistry. I learned that she thought the Guatemalan school system did not teach the children anything practical, and that she has a typing school where kids learn using typewriters. I learned that she was hard working: “There is time to rest when you die,” she said.
