Voices

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In my research work with children living with HIV in Kenya, I like to begin by hearing their voices. When we tackle a new problem related to children's health here, we usually start by listening. We listen to our children and their parents and caregivers share what this problem means for them in this particular place. Their stories, their voices.

Our latest listening centers around the stigma faced by children and families living with HIV. In the 8 years I have been doing this work here, I have heard over and over how HIV-related stigma shapes families' entire lives - from how they deal with the challenge of taking HIV medicines every day to how they arrange their child care. With one of our new projects, we are finally focusing on what this stigma really means for children here.

Today, I listened to a group of adolescents who know that they have been infected with HIV for their entire lives talk about this stigma. And they told the stories of the voices that they hear around them.

All around them are voices of stigma, of discrimination. Voices that would layer them in shame and separateness.

Listen to these voices with me. These are their exact words:

 

When children your age talk about HIV, what do they say?

They say that people with HIV are so thin.

They say that if you have HIV, you are going to die.

They say that if you share toilets, you will get HIV.

They say that those who have HIV have sinned.

They say that you only get HIV if you are a prostitute.

They say that those with HIV will just die.

 

So many of the voices around our children tell them that terrible things will happen if anyone knows that you have HIV. The voices give them a hundred reasons to hide, a hundred reasons to feel ashamed and alone.

 

How do other children react if they know that a child has HIV?

They tell other children.

They refuse to play with you.

They separate themselves from you.

They run away from you.

They insult you.

When they know that you have HIV, they will look down upon you. If you try to borrow anything from them, they will never give you anything.

They will chase you away so that you don't sit next to them.

Others will tell you openly - "don't touch me!"

They hate you.

 

Darling, beautiful children, we try to tell you that you are precious. How I hope that our voices at the clinic at least tell you that you can be healthy and strong, that you can have hope and a future. How I hope that you hear other voices telling you that you are deeply loved. How I hope there are other voices.

Please, world, raise your voices.

Posted at 08:37

Carrying

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She walked into my clinic room carrying her 3-year-old sister on her hip. The 3-year-old was tired and on the verge of tears. They sat down at the chair next to my desk, and the caregiver tried to comfort the 3-year-old even as she pulled out the bottles of HIV medicine for me to check. Her face calm and composed, she had the usual multitasking ease of someone well-accustomed to looking after a small child.

But this caregiver is only 10 years-old. A child herself.

The pair of them had walked for over an hour to get to their monthly visit at the HIV clinic. The 10-year-old had to carry the 3-year-old almost half of the way.

And, yet, this is only a small taste of the burden this 10-year-old carries. Since her mother died six months ago, she has been the "head" of their little household. Caring for her little sister. Trying to find food for both of them. Maintaining their tiny home in a shack that once served as someone's cooking space. And, amazingly, giving her younger sister medicines and taking her own medicines twice a day, every day.

Her eyes are old.

They have an elderly, bed-ridden grandmother who is technically their guardian, but the 10-year-old reports only seeing her two or three times since her mother died.

"Food is a problem," she says. "It is a struggle." There are some kind neighbors who, while they say they already have more children than they can afford, are often willing to share a meal with the two orphaned girls. Those neighbors have probably stood between life and death for these girls.

I go next door to consult with the clinical officer about what we could possibly arrange for these two girls, and the clinical officer tells me that she saw a 7-year-old who came in by herself earlier. Another child living with only a very sick and old grandparent. Another child forced into great responsibility so soon.

Frankly, do not have much to offer these children. Our social support services have been cut dramatically with the current round of USAID/PEPFAR funding, and we no longer have a social worker or Orphans and Vulnerable Children services offered at this clinic. There is no one for me to send to the house to follow-up on them or to try to manage their cases.

Of course, what they need most are parents. I can't provide those either.

I try to piece together some follow up through my study personnel and connections in Eldoret (which is a 3-hour drive away.) I give them some shillings and the protein bar I had carried along for my lunch substitute. I feel like I am sending them out with nothing.

Just before they are leaving, as I try to muster up my usual talk about hope and the future and staying healthy by taking medicines, the 10-year-old stops my heart.

"We will carry on," she says. Carry on, small warrior.

Posted at 07:59

Off to Kenya

A little update (from an airport, as usual)...

My team was successfully evacuated from Kenya back to the US this weekend, and now I am headed into Kenya. Things in the country continue to be tense in the midst of a very harsh government response to the Somali community and increased risk for retaliatory and terrorist responses. Nonetheless, the hospital is open to us again and, as always, there are patients to be seen.

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I work to build a healthcare system that provides the best HIV care possible for children and families in poor places. Sometimes, those are places with more conflict and risk. And, I know (because we have done the studies) that times of conflict hurt the HIV care our kids receive. So, that's why I am headed in. I want us to keep providing the best care we can.

I may not be able to go to the grocery store or out at night, but I do hope to get to my clinics in rural places. These clinics each see 80-100 children a day, supporting families in the challenge of giving children HIV medicines and treating their infections in the midst of all the other issues going on around them.

In our care system in Kenya, it seems to make a difference if I go to the clinics -- to supervise the quality of HIV care, to troubleshoot issues and to encourage the other clinicians that we really can provide good HIV care for children. I am privileged to have that job, and so back I go to my healthcare system and my children in Kenya.

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Posted at 10:10

My Football Star

I just learned that my football star, Wilfred, died today in Kenya. In his memory, these are the words I wrote about him 2 years ago....

Wilfred

Admissions Committee

He looks like the perfect college applicant. He has a set of nearly perfect grades on his high school transcript, a really great score on the national exam for high school students that determines placement into the Kenyan universities, and a record of leadership in student organizations and leading his soccer team to national victory. He is 18-years-old, and he wants to be a doctor. When he talks about his hopes for the future, his dreams gleam in his eyes with the determination of the focused forward who fought through match after match until he shot that stunning final goal.

The only complications to this college application are the laboratory results printed on the paper in front of me. Not only is he infected with HIV, but his immune system is not doing well. His CD4 cells, the cells that fight infection, are low, low, low. And his viral load, the measure of the amount of virus in his blood, is very high.

If only his HIV medicines had been as successful as his row of straight As. Worse yet, he is already on our second-line of HIV medicines, and right now I can only occasionally get a third set of medicines from the government after special pleas and petitions for a few special cases. I will make my best case to this health admissions committee.

"I will fight it," he says. And I believe him. He has tried so hard. He has done so well. He meets my eyes as I sigh and struggle over our options. "I will fight it."

Fight we must.

(Dear Admissions Committee, Please accept him. We'll try to keep him alive for you.)

Posted at 14:11

Join the Revolution

Educate girls.

Change the world.

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Learn the stories of girls from around the world at the screening for "Girl Rising" today on the IUPUI Campus for free. The film will be shown in the Campus Center Theatre at 6:00pm with a panel discussion afterwards. I'm on the panel with some other fascinating women.

One girl with courage is a revolution. #wearegirlrising

Posted at 08:14

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