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The Tumaini Project:
March 6, 2003 March 6, 2003 Today Grace received a sheet of paper that read: LAB REPORT FORM March 9, 2003 March 13, 2003 The last time I faced this I was in a Rwandan refugee camp. Thousands of refugees
were infected with cholera, a disease that causes such profuse diarrhea that one
dies of dehydration. Tens of thousands died and hundred of thousands were left
malnourished and dehydrated. We ran a feeding center where we fed babies less
than two years of age and weighing less than a certain weight. We restricted the
number of babies who could receive the food because we had a very limited supply.
The sickest babies were treated first, but there was no comfort in this. Everyday
the camps echoed the cries of mothers and babies who were skinny and young, and yet
neither skinny enough nor young enough to eat and survive.
In the Tumaini Project, with donations making medications available, the difficulty
is determining who should go first. The Kenyan physicians and I discuss the list of
patient names at length. By treating this patient instead of another patient, we
have saved one and doomed another. There is not enough medication and not enough
money. Who will make it into this lifeboat of HAART (highly active antiretroviral
treatment)? Is membership based on grades in high school, athletic accomplishments,
or dreams and aspirations? Who deserves to live and who deserves to die?
Should anyone be asked to make this choice?
In the end, we hide behind the shelter of defining illness to escape from the sun
of evaluating a life’s worth. We return to objective criteria to choose a patient
to receive medication, but sometimes I still hear the cries of hungry babies at
night.
March 25, 2003 Where can you find the stuff? It isn’t easy. You’d think that with
all this political hoopla about trying to make AIDS drugs accessible,
with Mandela himself saying that the situation is despicable, that you’d
find some cheap drugs at the nearby pharmacy. Dime a dozen. What about
those Indian pharmaceuticals, you say, the ones who are making them on
the cheap and undercutting the major drug companies so badly that they
can’t wait to shut them down? True, they’re supposed to be around and
people are supposed to be buying them and giving them to the ones
suffering from AIDS, but there are other forces at work. Laws which
say how a government hospital is supposed to work and who they’re
supposed to buy from. Hospital “shareholders”, who represent certain
drug companies, take it personally when you want to go in with the
competition. They don’t like it and they get more attention than any
poor man with AIDS.
The ones at the bottom of the barrel are lucky to be getting any of
the good stuff. What they don’t know is that sometimes you can find
a hole in the barrel and get out to take a look see. It’s amazing
what you can find and what you can get a hold of when you climb between
the wooden slats and metal encasings. But it takes a little detective
work; you can’t rely on what everyone tells you. You’ve got to find the
holes yourself.
I found one, a hole that leads to an oasis in the middle of bustling
Nairobi. Not many people know about it. The air is quiet there and
leafy trees form a grove where a pharmacist named Joseph sits next to
a treasure chest. Joseph works at the Coptic Christian Hospital and
he’s been getting generic antiretroviral drugs left and right. His
white medicine cabinet contains life. What costs nearly a hundred
bucks in a public hospital, he can get for fifty. He hooks you up
with the good stuff and he’s happy to do so. Doctors can fight about
generics vs. brand names, but that’s because people who don’t have the
disease easily forget that those who do have it are dying. Something
is always better than nothing and nothing is what most people are
getting these days. But if you peer through the hole, you can see
Joseph smiling back, and you feel that the world is a better place
to live.
April 3, 2003 Susan was told she was HIV positive at the antenatal clinic. Some public
clinics in Kenya offer free HIV testing for pregnant mothers in an effort
to decrease mother-to-child transmission of HIV. If mothers are HIV positive,
they are given Nevirapine, a long-acting antiretroviral medication that is given
once during labor. Without medication, a baby’s chance of acquiring HIV from
his mother is a flip of a coin. Nevirapine increases the odds of survival for
the infant, but not everyone has access to the drug in Kenya and the medication
does little to help the mother herself.
George came into the world with a cry and a gasp. Soon after the earth’s air
swept his lungs for the first time, his stomach received a scheduled shipment
of Nevirapine syrup. The medicine went to work trying to prevent the virus
from entering his small body, but the virus in this case had already set up
shop. George had coughing fits and fevers in his first few months of life,
and Susan brought him to the hospital many times. Each time the doctors gave
him antibiotics to cure the pneumonia and he would go home feeling better.
But his immune system was already compromised and he returned to see the
doctors frequently. Susan herself began to feel more and more tired trudging
back and forth between home and the hospital. AIDS was claiming her body.
George and Susan are the next two participants in the Tumaini Project. Without
treatment, it is unlikely that George will survive the year. Without his parents,
he would die even sooner. Tonight, George’s father quietly gives his son the
medicine he needs to live. Susan watches, wonders, and waits.
April 9, 2003 May 9, 2003 Making no headway, I have no choice but to negotiate. The World Health
Organization recommends one double-strength tablet every day and this is
what I am proposing and S. is rejecting. I then recall that one tablet
taken three times a week has produced similar results. I put on my gameface.
“If you don’t want to take it everyday, how about five times a week?” I offer.
S. shifts position in her chair and looks around the room. Finally she eyes me,
“How about once a week?” My heart starts to race and I am afraid to appear
overeager. “OK, three times a week, Monday, Wednesday, and Friday.” After
a pause, S. smiles and I can’t help but smile back.
May 28, 2003 “Clinical history includes recurrent pneumonia and PCP (1st episode at 5 months);
wasting syndrome; swollen lymph nodes; recurrent skin infections; recurrent ear
infections; developmental delay (not walking at 18 months). His clinical stage
is severe with consistently low CD4 percentage from age 3 months. He is presently
anemic and has pus draining from both his ears and is coughing up purulent sputum.
He is breathing quickly and looks uncomfortable.”
If Kevin doesn’t start antiretroviral therapy soon, he will die. He is our
fifth Tumaini participant.
For more information or to donate contact the Tumaini Project:
mhchung@ratn.org
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