Show-and-tell about what I want for Sarah

My research focuses on how we can provide the best possible care for children with HIV who live in poor places like Kenya. One of the issues that makes me crazy when I try to take care of children with HIV is that we do not have adequate or appropriate HIV medicines for children. During the last few weeks, I have thrown myself into advocating for the medicines that we need for children with HIV (last week, I got to do this for the Gates Foundation!), and I am on my way to Boston this weekend to do more of the same.

I like to use show-and-tell to help people understand what I am talking about. Show-and-tell and stories. So, let me tell you Sarah’s story (you’ve maybe seen her before if you read my blog regularly). Sarah is just one of the 14,500 children we care for in AMPATH – one of almost 5,000 we have on HIV treatment. I saw Sarah in one of our clinics last week, but I first saw her in clinic almost two years ago.

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This is how Sarah looked when she first came to an AMPATH clinic in Kenya. I hate showing photos like this, but the reality is that this is what many of our children look like when they first come to clinic. Sarah was 3 years old, and she only weighed 11 pounds – 5 kilograms.

Sarah’s mother had died two years before. Her mother received some HIV care, but we do not know exactly what happened. Her elderly grandmother was struggling to take care of her. But, when Sarah appeared at our clinic, she was severely malnourished and sick. She was diagnosed with HIV and started on treatment.

This is how Sarah looked after receiving appropriate HIV medicines.  Smiling and bouncing around my clinic room. Still tiny for her age, but a little girl who makes anyone who sees her smile.

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When I talk about some of the research that we are doing in pediatrics – and the research we dream about doing – I want to talk about what that looks like for Sarah.  After all, the entire reason that we are doing this research here is to try to find ways to take good care of Sarah – ways to help children like Sarah around the world not only undergo this immediate transformation, but also to grow and thrive for years and years and become adolescents and then adults.

But let’s do a little show-and-tell of what these medicines mean for a child. Our biggest problems for children often involving not having the right formulations of drugs for children or not having enough options for a child of a given weight.

It is easy enough to write down what a child should get on a prescription pad, but we often don’t really know what to do for a children of a particular size or age. We don’t have liquid medicines. We don’t have pills of the right size. We only have an option that will give too high or a dose or too low of a dose. And if a child has another infection like TB, which requires medicines that can interact in bad ways with HIV medicines, or if a child has any other complications – we may not have any options at all. Too often, we don’t know what to do!

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And what is reasonable or unreasonable to do when you are giving adult-sized tablets to a child – can you ask a parent to break a tablet in half every day? Into quarters? What if the right dose for the child’s weight would really be an eighth of a tablet? Do you just go with a dose that you know is way too high?

For Sarah, who came in weighing 5 kilos, this set of medicines would be our best option for her – all liquid medicines that she can swallow easily – 3 different liquids, one of which is a combination of 2 medicines that her grandmother has to mix up by crushing this tablet into 10mL of water. 1-2-3. A lot of bottles – even with the combination.

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As Sarah gets closer to the weight that she should be, our medicine options become even more challenging. She should weigh more like 14 or 15 kilos. If she got to that weight, this is what we would want her to take every day:

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Nine pieces of tablets every day. For a three-year-old. Our other option (not much better!) is to give her this:

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At least 3 tablets in the morning. Four in the evening. Half tablets and quarter tablets. And, yes, that yellow pill is a giant one. It also comes in a liquid version — which tastes completely, wretchedly horrible. So, we are asking Sarah’s grandmother to do this every day, twice a day. Breaking tablets. Dealing with all of these medicines. Making sure Sarah gets these every day for the rest of her life. Remember that she is only three! This is pretty crazy.

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We need better options! We want medicines that have been tested in children, including malnourished children or those with TB. We want medicines for children that come in combinations or long-acting forms. We want medicines that do not taste horrible. We want medicines that can be adjusted for a child who is growing every single month and who needs a different doses every few months. (I want a lot, I know. But these are my demands for the 3.4 million children living with HIV.)

My weekend excitement includes the opportunity to participate in an advisory meeting with a bunch of people who can actually make new forms of medicines for children with HIV. I am armed with data about our thousands of children and what they need. And I am armed with the story of Sarah in my head! Truly, I can’t wait.

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Wordless Wednesday: Cuteness

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On the Balance

I am not so good with numbers. I am a terrible accountant. (Don’t tell the NIH, which trusts me to account for large grants!) Some days, it is not clear to me how I became a physician-researcher given all the math and statistics I have survived to get to this place.

Some days, though, I find myself struggling with a different kind of accounting. Counting up recent deaths vs. lives saved. That kind of math doesn’t work, Rachel. Accounting for lives doesn’t make sense. There is no way to balance these figures. And yet, some weeks find me counting…

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At the end of last week, I lost a patient for whom I had fought really hard. When he left the hospital after a serious illness and a lot of struggle to keep him alive, I believed he was going to make it. I thought he was ok. And when he came back to the hospital and died last week, his death caught my heart off guard.

Today, we had another patient die, a girl who had been enrolled in our disclosure study and whose family was followed closely by my team. She had been sick for quite some time, but now the world will never see her sweet smile again. Her mother and her younger sister mourn.

Our children are dying. It is impossible to account for a life on a spread sheet.

But, day-to-day, the balance shifts from sorrow to joy, from joy to sorrow. Even as we wrestled with the unexpected death on Friday, another little boy for whom I fought hard to get a surgery to repair his heart went home and I rejoiced. Arthur was as recovered and strong as I could possibly hope for, and his smile was brilliant when I reassured him that, yes, he was going to grow now. The same day, we celebrated the birth of baby Vreeman, and I marveled at the honor of this beautiful baby namesake. Losses and gains. Our children die, but our children also live.

Three weeks ago in one of our rural clinics, I was incredibly frustrated by a teenager who was not taking his medicines. Brian wanted to stop his HIV treatment entirely. The clinic staff had pretty much given up on him. He had not opened his medicine bottle since the previous month when he came to clinic, and when questioned about it, Brian just shrugged. His father says that the medicines for HIV are not worth taking, and the boy had accepted what his father said.

I can’t force Brian to take his medicines, as much as I might like to. There is no court system or hospital in Kenya where I could exert my medical will over his father’s misguided thinking. As I walked with him across the clinic compound, the boy tried to ditch his medicine bottles and just slip out of the gate. He tried to escape again a little while later as we waited for a social worker.

I didn’t let Brian run off, but I felt like there was little I could do. I marched him over to my office to give it one last shot. In my mind, I was gripping him by the ear. I drew out my pictures to talk him through how the medicines worked and why he needs to take them. I even tried to convince him why he should keep coming to the clinic even if he stopped the medicines altogether. I tried and tried, but Brian’s face was still as a stone and he gave no indication that anything I was saying was getting through.

He took my drawing with him, though — my drawing of how the virus was fighting against the soldiers of his body. And, with my drawing, went my words about how much I wanted him to grow and be strong and healthy. And the medicines – please take the medicines. I had tears in my eyes when I looked at him, but it didn’t seem like he noticed. Deep down, I thought I had lost this one too. I counted him as a loss.

As part of the new study we launched this month, we are holding focus group discussions about the stigma experienced by families and children with HIV. We gathered adolescents for a discussion group at that same clinic where I had been three weeks ago, and who showed up but Brian. Brian, taking his medicines every day and telling my team that he was going to stay with the treatment.

“Vreeman: 1, HIV: 0,” said my study coordinator. Then, she adjusted it to “Vreeman: 1,298,372,397,398, HIV: will never win!”

I like that score better! We mourn, we rejoice. We count the losses, we count the victories. Most of all, we fight on.

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Adventures Along the Rift Valley

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In a lot of ways, Kenya feels like home. I am very accustomed to how my life and work here operate. I feel comfortable with my friends and adopted family here. I am even pretty used to the roads (as comfortable as one can be with the constant threat of collisions, massive holes in the pavement, and all manner of weaving, crazy traffic.)

But then, you have some days where you are driving along and the incredible, unique beauty catches your breath and makes you stop and marvel at the wonder of this particular part of the globe. Days when there are zebra grazing beside you. Days when you drive along the long expanse of the Rift Valley. Days when you almost hit two giraffes with your car because they are in the middle of the road and it is raining and dark and you were not expecting giraffes.

The American women of my study team and I had a few days of adventure driving across the country, with stops at Lake Naivasha, Hell’s Gate National Park, and then a different kind of hell which is the department of immigration in Nairobi. (I’ll spare you those insanely frustrating details. Let’s just say it is a miracle that anyone ever gets any sort of work permit or visa from this place. I, of course, am still without a work permit almost 9 months after my last paperwork was filed.)

But anyway, we are driving along, and then there are giraffes…. Wow.

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This is not when I almost hit the giraffes with the car. This was another encounter, when their grazing allowed me to get out of the car and take a photo of my trusty blue beast and the twigas…

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A long bike ride is a lot more fun when you have zebra onlookers.

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Hello Zebras!

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Baby. Boooch.

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My all-star team! They put together music playlists for the drive that even included theme songs for each one of us. Mine was Beyonce’s “Diva”, but they assured me that they meant it in the best way possible… because I can get things done.

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An unexpected zebra stampede behind Amy.

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Baby Vreeman

In honor of me and my family, my study coordinator and her husband gave their new son my family names…

Welcome, Manuel Gerrit Vreeman!

(In case you don’t realize, the Gerrit Vreeman parts are the Dutch parts. This baby is named after me/my father/ my father’s father)

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Although I had the privilege of welcoming him at his birth, our whole study team got to celebrate and welcome him with a baby shower — complete with a beautiful cake that officially declared the arrival of this newest Vreeman.

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