Abigail helps me cope with my to-do list.

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Abigail is overwhelmed. When she sits in our office in the HIV clinic, her shoulders slump as though she is carrying a huge sack of rice. You can barely hear her whispers as she recounts her story.

Her husband died three years ago, leaving her alone with their three small children. Abigail never went to school beyond 5th grade, and she struggles to find even small jobs so that she can pay for food and shelter for herself and the children. She says that when her family found out that she had HIV, they rejected her. Her mother sometimes watches the three young boys, but she will not let Abigail or the children stay at her compound for more than a day or two.

“I am all alone,” says Abigail with a deep sigh.

Abigail’s one-year-old son, Noah, has his HIV medicines in a special bottle. This bottle has a chip in the cap that records electronically the exact time that the bottle is opened each day, and then my study team can download a history of when the bottle was opened onto our computer. My study team can see more evidence of just how overwhelmed Abigail is – gaps of days when Noah did not receive his medicine. Her youngest boy is at serious risk of dying if he does not get these medicines.

Much of my research in Kenya is focused on those gaps – how can we find out when families are having problems giving children their HIV medicines? And when they are having problems, what can help them?

For Abigail and Noah, my study team did a lot of work with the clinic staff, with the social workers, and with a local psychiatrist to get this little family help with things like food support and treatment for Abigail’s depression. Within our HIV clinic system in Kenya, my team follows hundreds of families very closely, asking them all kinds of questions every month about how they are doing with the HIV medicines,  using these special tracking bottles to record exactly when they are taking their medicines, and wrestling through complicated challenges like how to tell the children that they have HIV and how to deal with the stigma that goes hand-in-hand with an HIV diagnosis.

As I launch into another month in Kenya, we have an insanely busy exciting few weeks ahead for my research projects. My to-do list  — with all of its little checkboxes — is way too long, and jet-lagged Rachel cannot help but feel a bit overwhelmed. But I am still excited.

We get expand our efforts this month. We get to know new families and dig into the stories of more mothers like Abigail and more children like Noah. And maybe, just maybe, we get to figure out how to help them better.

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Gordon Brown and a Little Ranting About Injustice

In 2004, when he was the Chancellor of the Exchequer in the UK, Gordon Brown gave a speech describing how the world was failing poor families – and poor babies in particular. One doesn’t often hear the person in charge of a powerful nation’s economy talk about such things. I am not sure who else carries these words inside of their head, but I think of them when I think about the terrible fact that thirty thousand infants still die every day in the poorest parts of the world.

Gordon Brown* made the case that these thousands of babies die because of our moral apathy and lack of political will: “And let us be clear: it is not that the knowledge to avoid these infant deaths does not exist; it is not that the drugs to avoid infant deaths do not exist; it is not that the expertise does not exist; it is not that the means to achieve our goals do not exist.  It is that the political will does not exist.  In the nineteenth century you could say that it was inadequate science, technology, and knowledge that prevented us saving lives.  Now, with the science, technology, and knowledge available, we must face the truth that the real barrier is indifference.”

Babies live here. And die here.

Babies live here. And die here.

This sentiment has shaped much of my journey in medicine and why I do the kind of work I do: We know how to prevent and treat most of the things that kill the children of the world. But we have not put the systems in place to ensure that children everywhere get what they need to have a chance at life.

This injustice is the inescapable lesson of a Kenyan hospital ward, as you stand over a peeling metal bed and watch a baby die. This is the lesson of a shanty clinic where a small team in a slum overflowing with garbage and one million people crammed together struggle to test people for HIV — and yet don’t have enough medicines available for those who test positive. You can’t avoid thinking about suffering in Kenya, and you certainly can’t avoid thinking about HIV. And you can’t avoid the realization that things do not need to be this way. Lack of political will. Indifference.

How can we let babies die because they live in a poor place?

What do you tell the mother who knows that there is medication somewhere else in the world that can save her child — but she can’t get to that medicine because she is poor and lives in a poor country?

I have to ask these questions because these children are my children. I cannot forget them. I have diagnosed them with HIV. I have given them medicines and food. I have watched them cry. I have carried them in my arms, with their legs and arms wrapped around me. I have wrapped their bodies in blankets after they died from diseases we could have treated, sicknesses we could have prevented.

Because I can’t forget, I keep coming back to work in a place where I have to squat in dirty latrines, where I can’t get a latte, where forgotten children lie sleeping in the gutters along the street. Even if you have not had the opportunity to do these things with your own hands, even if you don’t have to see the suffering, you can see it. You can open your eyes. You can see and read and hear. It is there for you to witness, all around the world and also right next door. And we each get to make our own decisions about how we will live in the face of this injustice.

(*A random side note about Gordon Brown, which also gives me a degree of fondness for the man: I actually met Gordon Brown a few years ago when he was still the prime minister of Britain. After one of our medical myths books was published in the UK, I got to go to London for a bunch of book promotional stuff. Anyway, I ended up on this popular British morning TV show, and the other guest of the day was the prime minister, Gordon Brown. As they were changing the microphone from him to me, I was struggling for something to say to him. So, I told him how I have appreciated his comments on global poverty and how I sometimes use this quote of his when I teach students and talk about my work with HIV in Kenya.  His response was that this was evidence that I was “as intelligent as I was beautiful.”  He is a politician, I know, but it’s not every day that the sitting prime minister tells you that you are intelligent and beautiful!)

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Wordless Wednesday: 3

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Creative Collaborations

One of the really fun things about my job is building partnerships across disciplines and across countries to figure out new ways to improve children’s health.

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Here is the story of how I collaborated with the IU School of Informatics and Computing and the wonderful Thomas Lewis to use film and story-telling to improve how we care for children with HIV in Kenya:

(This video on our collaboration is also highlighted on the IU School of Informatics homepage right now! Watch for the 3rd one to come across.)

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The Hardest Day

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I just told Deborah that she and her 4-year-old son are infected with HIV. I look at her stunned face, her downcast eyes, and I think to myself that this might be the hardest day of her life. I know it would be the hardest day of mine.

We are sitting in a small clinic room at the rural HIV clinics that AMPATH runs in western Kenya. We treat more children for HIV than any other program in Kenya, probably more than any other program in sub-Saharan Africa. But that all of that experience does not make this moment any easier.

Deborah sits on one side of the desk with her son standing next to her, her arm around him protectively. I sit on the other side of the desk. I have just used my faltering Swahili and the interpretation skills of one of my favorite clinical officers to deliver this bad news. I explain to this mother that our tests show definitively that the reason her little boy has been so sick is because he has HIV. And his mother has HIV too.

“But there is hope,” I say, trying to make this terrible day a little better. “There are medicines that can keep him alive – that can keep you both alive and healthy and strong – and we can give you those medicines for free here. We have many who are living with this virus; they are living positively instead of dying.”

The paradox of my experience here in Kenya, all wrapped up in yet another encounter in another exam room: the horror of the suffering/the hope of healing.

It turns out this is not Deborah’s hardest day.

When she was 26 years old and her husband of 6 years died after a month of illness, she thought that was her hardest day. Then, when Deborah reached a day, just a month after his death, when she did not have enough food or money to give her two children even one meal during a span of 24 hours. She thought that was her hardest day. But then, 6 months later, when she watched her little two-year-year-old daughter die a slow and painful death from a fever for which she could not afford treatment, Deborah knew that she had reached her hardest day of all.

When Alice died, the part of Deborah’s heart that had lived outside of her own body and inside her daughter, was suddenly gone. And she thought maybe this incomprehensible loss would “keep paining her until there was nothing left.”

“When my boy started to get sick too, I was so worried,” Deborah told me, “I was so stressed. I felt that I would just lose everything. I would lose my entire family.” She looks down at the frail 4-year-old at her side. “I would lose everything.”

The boy is covered in a terrible rash, he is coughing and weighs probably 15 pounds less than he should. But here we are, in the clinic, and everything is not yet lost. He is alive. We know what the problem is. There are medicines. There is food. There is a system to follow this mother and son closely. There is the strong possibility of recovery. There is hope.

This is not the hardest day.

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