Michael and his Mother

Michael has been taking HIV medicines since he was 3 years old. He’s 10 now — and he is alive and growing — but the medicines are not doing what they should. The virus is multiplying in his blood, and he has virtually no immune cells. It’s clear that either the medicines are not working or he is not taking them.

At first, his mother claimed that they have no problem taking the medicines, but eventually she started to be able to tell me about how much of a problem it is getting him the medicines every day.

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Michael’s mother runs a small bakery. She leaves early in the morning, and she doesn’t get home most evenings until after Michael is in bed. This bakery is a one-woman success story. It is how she supports her three children, and her sister’s family besides. But her work to keep their family alive is inadvertently threatening Michael’s health.

Most of the time, Michael doesn’t take the medicines without her there to supervise. And so it turns out that he is missing a lot of doses of his HIV medicines. Without the medicines, the virus multiplies. Without the medicines, his immune system weakens again, and he gets sicker and sicker.

Michael’s mother doesn’t want to enlist the help of anyone else to give Michael these medicines because if anyone saw those medicines, they would assume that everyone in the family had HIV. And she knows what their community thinks about HIV. HIV means you are dirty. It means you have sinned and you should be avoided. It means you are going to die. She looks around her, and she only sees the potential for stigma and discrimination. If people knew that she had HIV, they would stop coming to her bakery.

“No one wants to eat food that is prepared by one with HIV,” she says.

She doesn’t want to risk losing the business that she has worked so hard to build. Her family’s survival depends on the success of her shop. Michael’s mother travels almost two hours to come to our clinic in Eldoret, rather than going to our clinic closer to her home. All because she never wants anyone to know that they come to a HIV clinic.

After our long talk, we planned together some new efforts to make sure that Michael gets all of his medicines. She agreed to try something new. And I had to tell her scary things. I had to repeat how we do not have any other alternatives left if the virus in Michael’s body becomes resistant to the medicines he is taking now. And if he doesn’t take them twice a day, every day, the virus will indeed become resistant.

They are hard words to say and hard words to hear, but they are true. Once these medicines stop working, then that’s it – there won’t be anything left to help the boy.  We don’t have any other medicine options for kids in poor places like Kenya. (I think that’s totally unacceptable, but it’s also true. My heart breaks. My heart vows to fight. )

I think she got it though, and so I give them another chance to make it work with the current set of medicines. And I am left with these reminders from my time with Michael and his mama:

How vitally important is our work to determine which families are having problems with their medicines.

How much we need to address the terrible and isolating views of the communities around our families.

How great is our need to make appropriate HIV medicines accessible to children in the poor places where 90% of the world’s HIV-infected children live.

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Wordless Wednesday: not just alive, but thriving

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(how I measure success)

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Incandescent

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We had pretty strict limits on our television viewing as kids, so when I discovered Mork and Mindy reruns, I had to sneak into the basement and watch them with the volume turned down very low to avoid detection. The only problem was that I couldn’t resist laughing at the hilarity, which frequently blew my cover.

Robin Williams’ antics opened me up to my love of weirdness and crazy humor. He was incandescent and irrepressible. Who can come up with the right words?

One might question what it means for the world to mourn the death of a single man so much — and when so many are dying around the world. But, each life is a precious light and we cannot help but mourn the loss of a light that has warmed us. And of course, Robin Williams was a man who brought much joy and laughter to many. And the sadness was likely part of what made his comic genius so sweet.

When you love someone with depression, this is what you fear the most: that a moment will come when the distorted lens through which that dear one sees will become too much. Depression is a wretched disease that steals far too many lives.

In celebration of the light, in celebration of the brave battles being fought daily by all of those with mental illness, we can laugh and admire his brilliance again and again.

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The Voices of Our Children

This video debuted at the special pediatric section of our International AIDS Society meeting. I loved it because these voices of children growing up with HIV all around the world sound just like the voices of my youth in Kenya. The same challenges and difficulties. The same hopes and dreams. The film captures them so well. These are the same words they share with me in our clinics in Kenya.

I also chair the pediatric group for the largest international consortium of HIV care programs (IeDEA), and the professionals working with HIV-infected children and adolescents from all regions of the world agreed: Listen to the voices of our children. They are beautiful.

I cannot wait to show this our youth in Kenya.

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Postcards: Koalas in the Wild

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