Five years ago, when I was first trying to figure out the best
ways to help families in places like Kenya give their children
medicines every single day, I interviewed Mary. For months, I
interviewed mothers and fathers and grandmothers and aunties about
what it meant to care for a child with HIV and to try to give them
all of these medicines. As I prepare to present the results of five
years of work at the International AIDS Society meetings in
Malaysia next week, I am thinking about what I learned from
Mary.
Mary, the mother of three children, is infected with HIV
herself. When she comes to the HIV clinic every month, she walks
for almost two hours, a journey made much more slow by walking with
a seven-year-old over this rough distance. Mary cannot afford even
the 10 cents for the public bus. I still remember my first trip to
her house.
To get to there, we drove along rutted dirt paths, weaving
around holes and the deeper trenches and swamps of mud. The thing I
remember about her house was that I did not realize it was a house.
She lives in a small structure made of that same mud and topped
with a tin roof. The whole thing measured about 6 feet by 10
feet. From the outside, you might think (like I did) that it
was a shelter for a cow or a goat; you would not guess that a
seven-year-old, a nine-year-old, a mentally challenged
thirteen-year-old and their mother all lived inside. I could not
figure out where they all slept, even lying on the floor
side-by-side on a sleeping mat.
Mary has a sweet, ready smile. As she welcomed us in, she
insisted on pouring me tea. (Such selfless hospitality for a guest,
always. I eat and drink whatever I am given in these homes, no
matter how likely to make me sick. Sausage of questionable origin
and age? Sure. Thank you very much.)
Mary's husband died from HIV several years ago. When Mary
and her youngest had wasted down to skin and bones ("I looked like
I was already dead," she said in Swahili), they tried the herbs
from the local healer. Finally, when they both had a cough
that would not go away, they went to the hospital where both Mary
and her seven-year-old were diagnosed with HIV. They were
enrolled in our AMPATH HIV clinics and started on antiretroviral
therapy, the medicine for HIV.
"I am alive again," she said. "I am alive because of these
medicines."
The mud house and the bit of land are not hers. After she
was diagnosed with HIV, Mary was forced to leave her village and
her extended family. She was shunned for "bringing this disease to
the family." She stays on this property at the mercy of her son's
teacher, who wanted someone to live there to make sure that the
"neighborhood drunkards" did not get into the maize crop.
Mary taught me things that I have now heard over and over again.
Mary talked about how she feels that she has to hide the medicines,
the diagnosis, their trips to clinic -- how she has to hide
everything. She is ashamed and feels guilty, and her pastor tells
her that this is exactly how she should feel. All of this makes it
hard to take the medicines. She talked about the challenges with
giving her child the HIV medicines when Mary arrives home after her
daughter has fallen asleep. Mary says that when there is no food to
eat, the medicines make her daughter feel nauseous and so sometimes
she does not give her the medicines when there is no food.
Mary taught me some of the questions that we ask all families
now: Who knows that your child takes these medicines? Do you have
anyone to help you? Is food a problem for you? Mary taught me some
of the questions that we will be recommending next week for clinics
across the world that care for HIV-infected children. Mary's
daughter is 12 now, and last month I had to tell her that she had
HIV. She was refusing to take her medicines because she did not
know why she was taking them. Our next challenge, the next thing
that Mary and her daughter are teaching me has to do with how to
best walk families through that big challenge too. That's the next
thing we want to start sharing around the world.