Language Lesson #3 (October 22, 2006)

Here are words I've learned in the past few months here in Busia:

virusi: virus
ugonjwa/mgonjwa: sickness / sickly (person)
kwashiokor: "wet" malnutrition
ukimwi: AIDS

Busia district has one of the highest HIV/AIDS rates in Kenya (estimated at 25% by MSF), and it is the hub for Doctors Without Borders' East Africa ARV program. In a country where HIV/AIDS has already been declared a national emergency, it is criminal that transmission rates have increased over the past 5 years.

Granted, the Lake Victoria population has specific challenges that make them a higher risk community. For example, major transitways run along and across the top of the lake into Uganda, opening the border to a great deal of trafficking in persons, but also to sex worker markets. Additionally, polygamy is not uncommon, and some of the most at-risk populations are married women and girls. Further, there is a strange market exchange that happens along the lake that I still don't fully understand. Effectively there is a (somewhat) historic trend where fishermen demand sex from women in exchange for fish, etc. Consequently, women, especially single women and mothers, end up trading sex for food in order to survive, but also, there seems to be less of a stigma attached around this trade.

During the mid-90s I had several friends die from AIDS, and at the time a person's HIV status was still incredibly taboo. That said, I don't think I've ever been so jarred by the hyperpresence of the virus. When I first arrived I was inspired to see the openness with which people support organizations for those living with AIDS, as well as those supporting public health campaigns aimed at safe sex practices, VCT founding, and public health campaigns. It is not common to see posters and t-shirts advertising safe sex, ARV treatment, and pro-testing slogans.

In the same breath, I sometimes feel that I am walking through a community that is dying. To say that death is everpresent is an understatement. The cruelty lies in the unnaturalness of it; people are dying of diseases that have cures. They are dying while those in the west enjoy superior access to medicine and healthcare while western pharmaceutical companies squeeze every last drop of money out of third world countries (with their patent protections). This is not an uncommon fact, nor is it uncommon to know that those same countries use these populations as their human guinea pigs in trials where informed consent is a joke, not a standard.

There are already so many challenges here - malnutrition, lack of adequate medical access/care, malaria, poor water and sanitation, the list could go forever. I knew all of this logically before I arrived in Kenya. But if you've had a loved one pass away from AIDS, you will understand the gnawing feeling that seizes your heart when you know someone is dying. I don't know how to describe the disorientation and longing in the bottom of your heart when you are looking at another person, maybe someone you love, and know that you are staring at an inevitable and cruel death, compounded by the incidence of location. I can't describe the pain and the outrage knowing that this is ridiculous, unjust, and cruel. Most people here are not going to start up ARV treatment or even have access to any such thing, and many more are cast out of their homes to die; some will starve to death, and some will die from exposure. Nearly all will contract TB and die from it sometime during the course of the disease. By the time people reach morbidity, they have already been abandoned by the world. If you have seen someone cough up blood and parts of their lungs when there is nothing left to their body but bones, thin skin, and lesions - or if you can imagine that - magnify that feeling 1 billion times, and you might approximate the shroud of death that hangs over everything.

I often feel emotionally lost in a sea of despair. I am drowning, and the only way to reconcile all the pain and helplessness is to either detach coldly from the situation or the pretend that you don't notice anything. Sometimes I wonder what kind of battles we have to fight with our minds to maintain a shred of sanity in a situation that defies all logic and reason. While there are many good programs and organizations in the area, at the same time everything feels hopeless. For example, the Kenyan Ministry of Education requires that students be taught about methods of avoiding contracting AIDS (but are not allowed to teach about safe sex). One of our programs tries to decrease transmission for young women, but we find repeatedly that teachers tell their students that condoms have small holes in them that will allow them to catch HIV/AIDS, so better not to use one at all. What good is education if you then actively lie or obscure the truth from people under the guise of religion, conservative values, or whatever nonsense someone comes up with that day as an excuse?

I had mentioned MSF's ARV program. While they have offered amazing homecare and ARV services, the ARV program is shutting down in East Africa next year. I've heard mixed messages for why this is happening, but effectively the community here is not seen as being as "at risk" as other populations (e.g. the Congo, Sudan, west Africa). At the same time, MSF is trying to transition the program to Kenya's Ministry of Health (MoH) as part of their mission to achieve sustainability. More obviously, MSF is transitioning patients off of ARV treatment altogether. Why? Because no one expects the MoH to be anything short of inept at providing treatment, and further, most of the drugs they receive will probably be sold on the black market and will never reach patients. People will begin treatment and will not be consistent. As you might know, ARVs have to be taken on a very strict schedule and must be kept up throughout the entirety of treatment. If you go off part way or are not consistent in taking the drugs they do not help, and further, the virus mutates to become immune to treatment. This complicates things further because it puts everyone else at risk, effectively creating "super HIV" strains.

I know logically that does not mean that everything is hopeless, but sometimes I wish people had to live with the consequences of their actions. Sometimes I wish I could take every pharmaceutical chairman and leave him abandoned in a hospital wing full of dying African AIDS patients. I know that this may conjure some kind of stereotypical vision of AIDS in Africa, but to me this is about a larger issue of justice, compassion, humility, and humanity. How cruel that by an accident of birth we decide in a moment who deserves to live, and who is dispensible. How, with any moral conscious, can we continue to support systems that perpetuate the utter disregard and devaluation of human lives?

When I first saw the (red) product campaign, the bitter cynic in me laughed. Here is another way to make people feel good about their materialism, or here is a way to promote a "solution" through capitalism without looking at the regulatory issues that we [the U.S.] place as blockades to access to affordable treatment.

But then I thought about it a bit more. It's not like people are going to stop shopping tomorrow. So why not at least throw your dollars behind something that may alleviate someone's suffering? Does it address the larger issues in place? Not really. But maybe it offers some kind of solace in the interim. It's not like the world medical system and intellectual property system is going to do some kind of magic reversal or exception for the betterment of society overnight. The AIDS rate in Busia is not going to drop abruptly in the next year. I guess I have to hold onto the thin thread that says that maybe we are a generation who will care more today than others did yesterday, and that maybe we will use the information we have to inspire and to act. Maybe there will be a sense of responsibility to one another as a beloved community to love one another passionately, no matter how foreign or how far. And maybe that kind of passionate love can help us dedicate our lives to "righting" some of the wrongs we've allowed and benefitted from. Maybe it will help us to realize that we are hyperconnected and that each time we act or choose not to act we send out a ripple that touches the entire world. Maybe we will realize that we cannot continue to close our hearts to the suffering around us because it is difficult, but that the only way we can move forward is to open ourselves to this kind of pain and realize that we, each of us, are capable of even the smallest actions. And maybe all these smallest actions, in sum, are the kind of lifeline that we are all waiting for.

Here is the last word I've learned:
dawa: cure