Concerns from the clinic

I thought I'd post some of my notes from a meeting I went to last week about HIV+ teens a long with a few of my other thoughts. Dr. Donna Futterman is a dear friend of Mardge and she gave an excellent talk.

Some basic stats about HIV and transmission according to Dr. Futterman

• For every 4 HIV+ people, 2 of them contracted the virus as teens/young adults

• The average age of infection of girls is 5 years younger than boys--due to the tendency for girls to have male partners that are older than them and not being able to negotiate condom use in their sexual relationships
  
• The average age at first sexual encounter in Rwanda is 13 years old
• It is also easier to become infected via sexual transmission when younger

The majority of children in WE-ACTx have been positive since birth from mothers infected through genocidal rape. Ok, so they've been dealing with this since their first day of life. Not true for many of our teens. The heartbreaking dilemma of when to tell kids is something Rwandan mothers have been struggling with for years. Turns out, they're not so good at it...
The story, common to many Rwandan teens, is one of a struggle to reach the age of five. Battling malaria, TB, dysentery, malnutrition, poverty. Then a struggle to find money to go to school. Finally, they have hopes of more than basic survival...a family, a job, love and a home. Until their mothers announce to them they are HIV+. That's right, many Rwandan teens find out they are positive as teens, through no fault of their own. How do you cope with that?

HIV patients are heavily stigmatized all over the world and their situation is no different in Rwanda. Worst case scenario: death at the hands of the misinformed, scared community members; at best, social rejection well past being the odd duck or the black sheep of the family. I say family, because many people don't tell anyone outside of immediate family due to fear of abandonment. I say abandonment because that is truly what happens. These people are left to fend completely for themselves and often physically and geographically pushed out of their village or town because no one will hire them for work, no one will sell food to them, no one will help them get milk or clean water. Simply, they are seen as walking disease bags. Trash. To be stepped over.

Finding out their positive status as teens is devastating and often causes them to act out against their parents. There is definitely a blame game going on here. The question being is it temporary or will the teens be angry, pushing their parents away forever? The sad truth is that they can't afford to stay angry for long, not at their parents. These may end up being the only people who will support them if the community were to find out their status. The counselors at the meeting attested to stories of teens turning to drugs and alcohol and engaging in many reckless sexual encounters as a reaction to their new label. An increasing number of children are taking ARVs, which has much better success rates of medication compliance when they grow up on medication because they are used to it. It is part of their daily routine. Like a Flintstone vitamin if you will. However, when teens are striving to be like their peers, to fit in, to be accepted, introducing something as small as a pill each morning and night, can have a great effect. Throughout my stay here I have often heard ARVs are a daily reminder of the genocide and of it's direct or indirect consequences. For the young people of Rwanda who find out later they are positive, they are no longer one of the lucky ones. They are a statistic. Support services need to be in place to help them recover from the shock, work through their anger, and find hope in a future that is entirely possible.

I have attended the children's and adolescent support groups. I have spoken with many teen girls who need someone to share with and I am honored and privileged to have been chosen. This about sums up their worries: what will I do? The support groups here, for all age groups are truly the most striking feature of WE-ACTx and definitely a much needed service. The people, at any age, who attend their respective groups are able to find friends to confide in, extended family that shares their worries, shares in their burden. At every meeting I have been to, participants express the most sincere gratitude for the existence of the support groups. This, along with peer education has been life changing according to these patients. It is amazing to sit in a circle with young men and watch them open up about their fears and to see them comforted in each other.

So I suppose the question on everyone's mind, well at least mine, is what can I do about it? Yes, I'm finally here, in the middle of this new place, but still an outsider make no mistake. What will I do when I come home? What can people who are feeling incredibly ordinary do? It will take more than giving money. Giving money doesn't give hope. Giving money doesn't show love. There is a world of difference between charity and justice. So stepping down off my soap box, I say to you, educate yourself. I have come here to learn first. No one can act without first understanding.

Before I came I realized how truly confused many people are about HIV, transmission, and treatment. I was asked how I would avoid getting AIDS. My immediate reaction to this question was pure sarcasm...so I'll leave that to your imagination...But the more I thought about friends and family reaction to this trip, the fear of international travel was nothing compared to the fear of working with AIDS patients. And that's exactly it...that's the answer...the job waiting for me at home...Education. I have not been afraid, not for an instant, while being here. I am not afraid because I am educated. I have sat in a circle with older women and talked about domestic violence, HIV transmission through breast feeding, and their options for safe sexual encounters. I have sat with prostitutes, orphans, substance abusers, victims, thieves, and the lonely. The best learning experience of my life has been spent listening to the outcasts. Lessons learned: 1) listen...It is so hard for some to speak, but the voices of the people I have been working with need to be heard. It is out of respect at the least and love at the most. Simply listening makes all the difference to the Rwandan people. I heard this, straight from many mouths, while I was listening.
and 2) question...It is hard for us to ask questions partly because we don't want to admit to not knowing the answer, but partly because we are afraid of what the answer might be. My hope for my writings is that someone reads them and hears the stories of the people in Rwanda and the world's poor, wherever they are, and are truly shaken. I hope to challenge the fundamental beliefs of our community in such a way as to stir up our way of life. I don't think that anyone can begin to help without first evaluating their own lifestyle and making a conscience effort to include the poor in it.

Some stuff from this week

I spent most of my time this week working in the WE-ACTx town clinic doing the study. Patients were scheduled for Monday when I was supposed to be at Nyacungu and it was my turn to stay. The study is going well and progressing along at quite a rapid pace so hopefully we won't be away from the shadowing/clinical experience and support groups for much longer.

Tuesday I went to Icyuzuzo with Dr. JMV. We had an interesting day as we found out the local private pharmacy is scamming WE-ACTx and the patients. The Icyuzuzo clinic and WE-ACTx town clinic are partner associations. When Icyuzuzo doesn't have the medications the patients need, they are sent to the WE-ACTx town clinic. If the town clinic doesn't have it, they are sent to a private pharmacy in the area that is under contract with both associations to provide meds up front to patients. WE-ACTx pays by prescription each month and the patients still get their meds without having to pay. The patients were being turned away, told to come back each day for months at a time because the private pharmacy told them they ran out of their meds. They'd hand them a card stamped by their business with the date and medication written on it. Then, they'd turn in the original prescription and get paid by WE-ACTx as if they had given out the meds. The only way WE-ACTx finds this out is when patients come back to the doctor and tell their story. A trip that they can typically only make once a month. The man who told us about this came to the clinic for his July ARV meds and was still waiting from the private pharmacy for his May and June ARVs! To properly stress the significance of this--ARVs are saving his life...without them he will progress to AIDS and die. Period.

Another report this week was from a patient who came back from the private pharmacy with the wrong meds. They charged WE-ACTx for the expensive, top of the line meds (in Rwanda) and provided the patient with a cheaper drug that wasn't even the same type of medication. Unbelievable. Dr. JMV asked me to pass the message along to Mardge and now WE-ACTx has another issue to add to their list of concerns.

On Thursday at the clinic, I met a nurse who has been on leave named Christine, who spoke quite a bit of English. I told her that was my mother's name and she jumped out of her chair, hugged me, kissed me and we've been family ever since. Don't worry Mom, she told me to tell you that since you're so far away she'll be my Rwandan mother and I am now one of her girls. She said she will keep me safe, and make sure I'm eating well...It was as if my mother had teleported into this Rwandan clinic exam room...hahaha. She is bringing me a picture of her family as a gift, 'so you will know your new Rwandan family'. I need to find a picture of my family in return for her, which should be interesting since I don't have one on me, nor do I have any still left on my sim card in my camera, or have access to a printer...hmmm...

Every time this woman left the room she'd slap my cheeks...it's tough love all the way here... and when she left for the day she hugged and kissed me again and gave me a flower she'd brought to brighten up her office that day. The people here continue to amaze me. Something as simple as having the same name makes you family here. True, there are many Rwandans who are extremely interested in mazungos as it is a sign of privilege to have white friends, but today it was clearly beyond that.

Candida's Fabulous Biscuits

Today Margot and I made dessert biscuits with Candida, our friend who works at the WE-ACTx house we're staying in. She's fabulous and so this recipe is all thanks to her and her fabulousness. It makes a lot...

Ingredients:
8 eggs 8 tablespoons flour 2 limes (trust me on this one) 8 tablespoons sugar
1 tablespoon baking powder oil for frying

Grate both limes (rinds only--for zest) with the finest side of the cheese grater. Set aside.
Add all 8 eggs and 8 tablespoons of sugar into bowl and mix well.
Add 2 tablespoons of grated lime rinds to bowl and mix again.
Add 8 tablespoons flour to bowl and mix well.
Add 1 tablespoon baking powder, mix.
Add more flour if necessary to make the consistency of pancake batter (We ended up with 10 tablespoons of flour total in our batter). Mix it up again.
Add the rest of lime and mix it.
Fill a shallow pan halfway with oil and turn on low/medium heat.
Put some oil in a small bowl (not in batter).
Coat hands in oil (we did all the scooping by hand). Dip tablespoon in oil and use to drop batter into pan with oil once oil is heated. The batter is going to be fried so heat the oil appropriately and be careful.
Drop about 1/2 teaspoons of batter into oil and fill pan. Dip tablespoon in oil when batter starts getting stuck and hard to drop into pan. The batter should drop fairly quickly otherwise it (like my first few) ends up stringy, but tastes great anyway so I suppose it doesn't matter.
Use a strainer spoon to turn over each biscuit when the top of the biscuit bubbles (like pancakes). Each side should be lightly browned, then take out and put in strainer.
Make sure to use strainer spoon and put in a strainer to drain any excess oil before eating.
Tada! Eat and enjoy!

I'm really bad at updating

People were telling me that promising to post everyday is quite a lofty goal and I turned up my nose at them saying, 'Pish. I'm on top of my stuff.' I lied. Sue me.

Last Saturday was day of the African Child. MOST FUN EVER!!! I started off my day at the futball field welcoming some kids and then made my way over to the crafty activities. No, I did not participate in the futball fun.

I worked at the mask making station and all of our supplies were jacked by the kids before I even got there. Poor Nina...she never saw the stampede coming...The kids were incredibly creative with a few stickers each and some garland. Note to Rebecca: All of your stickers were snatched up and considered a very hot item! I have a picture of a little boy wearing some. I tied masks on little heads for about two hours. The kids took pictures with my camera and while most of them turned out with people missing body parts, they still look great! Pictures are difficult to post on my blog because the internet takes a very long time to load them here so I will be adding an online photo album soon.

After masks I was mobbed at the face painting station. Being one who isn't known for artistic abilities, my lizards looked like bloated turtles, flowers looked like blobs, and cars were unrecognizable. Good thing there weren't any mirrors.

Lunch followed craft time. Fanta's all around. Fanta is a strange fad here. It's a very coveted treat and unfortunately is cheaper than clean water here. I find this to be absolutely ridiculous. Especially since I've yet to see a dentist anywhere here and tooth decay is clearly an extensive problem for this population...can't blame it on the food, they don't get a lot to eat...For lunch we had some meat, wedge french fries, and a really good roll/cake thing. The little girl in the photos I posted with the yellow hat and red coat sat on my lap while she ate and I felt very much at home, like Thanksgiving dinner, cutting up food and helping to control the milk spillage situation. The girl on my lap and the little boy next to me kept sneaking pieces of my meat, so by the time I started eating I didn't actually get to taste any of it. Everything else was delicious though!

The kids danced and sang...I've got video and audio recordings that sound amazing. After the festivities concluded, the other interns and I broke into a spontaneous dance party and I must say, my dance skills were quite good. I danced with a lot of the kids who just really enjoyed the attention and the fun time in such a safe and welcoming place.

Sunday was definitely a day of rest and relaxation. The perfect end to a fabulous week!

How to Ride a Minibus in Kigali

Coauthored by Margot R. Moinester
1. Is the Minibus Right for You?

When arriving at the bus stop you will see a variety of modes of transportation. There will be mottos which look like adult dirt bikes and private taxis which are all white with an orange stripe down the side. Lacking in seatbelts, these vehicles are also quite expensive. Lastly there are the minibuses. These are large, white conversion vans with more windows and incredibly funky upholstery. There are four rows of seats including the most coveted spots next to the driver. Squish in because everyone’s family in Rwanda! If you are at all claustrophobic, be wary. If you are highly talkative and enjoy close interaction with those around you…this ride’s for you.

In addition, it’s the cheapest mode of transportation in Kigali. Enough said.

2. Choosing the Appropriate Bus

It is key, when traveling, to pick the correct mode of transportation as well as the correct route. A happy trip starts with heading in the right direction, geographically speaking; no one likes to start off being lost. However there are often complications for even the savviest traveler. Be sure to speak directly to the driver, though this position may vary as the driver seems to switch at almost every stop. Be wary of the money man. He just wants your money and will tell you any lie to get you on his bus. More about the money man to follow.

On occasion the final destination of that particular bus is written on the back of it. If you have a poor sense of direction or are in any way less than an expert on the layout of Kigali, the final destination does not assist you in any way on successfully getting to your desired location, but simply exists to further complicate your life. We suggest ignoring it completely unless, conveniently, that’s where you’re going.

Choose a bus that is primarily full because you are now on Rwandan time and the money man will not signal to the driver to leave until the bus is completely full. There is no sense of urgency here; and yelling at the driver about strict time commitments will not make the bus start moving any sooner. Therefore we advise you to choose your bus wisely!

3. How to choose a seat

This only applies to nearly empty buses.

If you’re getting out early in the route, sit closest to the sliding door on the right side of the van. This will allow you to trample and inconvenience the least amount of people on your way out.

However, we are often the first on the bus and therefore have some advice about which seat to choose. You can always wait until the bus fills up more, but you run the risk of losing a seat and being stuck on the outside, having to get up every stop to allow other passengers to exit. This can be quite cumbersome, especially when carrying any bags. Authors’ note: we recommend not carrying anything with you that is not absolutely necessary because it will be residing on your lap the entire trip.

Seats are not clearly demarcated on the minibus. This means the number of people riding in each row, depends solely on the size of each person and the money man. If he says move, you’d better move in because more people are going to join you. Don’t forget that there are two seats on each bus that fold out from the inside rows, closest to the door. Avoid getting stuck between the folding seat and the main row, as this is an incredibly uncomfortable position which will leave you with a pole in your butt.

Authors’ choice: the window seat, on the left side of the bus, is the way to go as it provides a nice breeze and a place to lean as well as allowing you the comfort of not having to get up with each passing passenger.

4. The Money Man

The money man is an integral player in every bus ride. Obviously, he takes your money and assures that every passenger pays, but his job extends far beyond fare collection. He is a recruiter and advertiser, a cheerleader of sorts. He will run to other buses and try to steal passengers to fill his own bus. If it’s a slow day, a persuasive money man can make your trip begin a lot sooner.

Side note: if the bus starts moving and you’re looking around, thinking, “where did the money man go?” No worries. Look out the window, as he’s probably running alongside the bus. Money men are dedicated and will sacrifice their own seat for another 100 francs from an additional passenger. Look forward to cheering on an out of breath money man at the next stop. The whole bus will share a laugh at this entertainment.

5. Bus etiquette

Move over, move over, move over. You must fill every nook and cranny in the bus and the driver won’t leave if you’re taking up enough room to fit in an additional passenger. Don’t be offended if someone actually sits on you. Just hope they move over a bit.

The upholstery is unexplainable and can serve as entertainment. Enjoy.

While you may be pleased to recognize US ‘90s pop music blasting on the radio, don’t sing too loud. You will get looks from the passengers around you.

When you are ready to exit, you must signal the money man who will get the driver’s attention to stop the bus. This is done by knocking loudly on the wall or roof of the bus. The money man, hearing this, will collect your money and make sure the driver knows to stop.

Authors’ note: it is common that you will have no idea where to get off the bus. As Rwandans don’t use street signs, it is best to be aware of major landmarks. If you are sitting in the middle of a row, it might be difficult to see out of the windows so attempt to alert the money man of your final destination before getting on the bus. If you look lost, he may take pity on you and alert you to exit the bus at the appropriate time. Otherwise, Good luck.

Pictures from Day of the African Child

Let's Play Pretend Again

It's officially last Thursday...

I arrived early at the clinic to await a ride to Icyuzuzo and sat down at a table on the balcony where the women wait to be seen. I decided to put my headphones in and listen to some music while I was cutting out more of those eyeholes for the paper plate masks. At first I was alone. Being engrossed in my own musical world, I continued to feel alone and ended up singing loudly. I look up as I feel eyes watching me to find that I was no longer alone...a few women had filed out onto the porch and as I looked up, began laughing hysterically at me. I continued to sing, and playing the fool, started to dance. It was great, and I'd like to think everyone was entertained. These are the little moments that make my day here.

I also played with another cute baby that was crawling around on the floor by her mother. She kept watching me out of the corner of her eye and I was really hoping this wouldn't end up a repeat of the sobbing toddler incident from the day before. After a few minutes she wandered over to me, stuck out her chubby hands, and pulled herself up. Within a few short minutes, she was on my lap giggling and cooing in that special way that only little ones do. All the women seemed to let me in after that and became very smiley and talkative. Fabulous start to my day!

The WE-ACTx clinic in town (our home base if you will) accidentally scheduled patients for our arterial stiffness experiment/project, so I went to the Icyuzuzo clinic and Nina, awesome as she is, graciously volunteered to stay behind and work with these patients. At the clinic I began my ARV (anti-retroviral) non-compliance study with Dr. JMV. We're asking patients what kinds of things effect their ability to take their medication correctly each day.

Another little boy came in today. He looked to be about 3 years old, but appearances are very deceiving here with respect to age. Many people look far younger than they are. Anyways, little peanut walked in stuck out his hand, which I took to shake and, with lightening speed, was settling into my lap. (I swear, I've held more kids in my two weeks here than I have my entire life in the US.) He snuggled with me and had an intense desire to hold my hands. He was sitting on me, laying his head on my chest, and yet that wasn't enough. Every time I moved my hands, his fingers found mine and he just wanted that special attention. I was goofing around with him, looking at him, then away, little kids are excited by the simplest things! Then, out of the corner of my eye, I see a tiny finger sneaking up to the side of my nose and he started talking to me. Dr. JMV told me the little boy noticed my nose piercing and thought it was pretty (ha! mom, some people do like it!).

Dr. JMV continued, by telling me the young boy that had clearly worked his way into my heart with lightening quickness was here to start ARV therapy. His CD4 count was 246. Under 200 is AIDS defining. This child was very sick, though you'd never know it. (CD4 is a receptor found on the surface of white blood cells that alert the immune system of a need to mount an immune response when you're sick. HIV strips the cells of these receptors and so your body is not able to get its shit together to mount a successful immune response. Hence the severity of the disease and the commonness of opportunistic infections, such as TB, herpes, etc. The more severe the stage of HIV, the less CD4 receptors-->the worse the immune system functions.)

This is the epitome of my experience in Rwanda. Powerful, loving interactions that leave me feeling drained and heart broken. Everyone's story has a twist...it's never good. I knew that this would be a hard place to spend the summer. But I never expected to see such hopeful, loving people here. This is what makes it hard. I feel jerked around emotionally, even in this short time, because I build up hope that the patient in front of me will be different. Something will be positive for them. It is uplifting to interact with them, and crushing to hear their story. How can people so loving, have such terrible lives?

I'm really learning a great deal about Paul Farmer's theory of structural violence here. The idea that social structures act in ways to keep the poor, poor. More on these thoughts later, I'm sure.

Friday:
Masks, Masks, Masks. I saw patients at the WE-ACTx clinic for our study then worked on those damn masks all day. They're finally done! We had awesome pizza for dinner and had a mask making party. I don't know how I always seem to volunteer for the most time consuming stuff. I can't wait to see the kids decorate them. That'll make it all worth it!