"If you want to go far, go together"

When Peter first found out he had HIV, he thought all hope for the future was lost. He was 13 years old, he had been infected since he was born, and now he said, "there is nothing for me but death."

Through the AMPATH care program in Kenya, 15,000 children receive HIV care and medicines that keep them alive and healthy and growing into adulthood. But they need hope too.

Peter found that hope in a support group at his clinic that was just for kids like him:

"The group became my family," he said. "The only place where people understood the burden I was carrying, the only place where I had friends who believed that I could go far, that I could live."


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We want to offer monthly peer support groups at each of the AMPATH clinics in Kenya for adolescents just like Peter - older children and youth who have learned that they have HIV. These groups change children's lives by offering a safe place to talk, build friendships, and learn how to cope with their illness.

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I really, really, really want to offer support groups for my kids in Kenya. They need them and want them desperately. They deserve a safe space in which to be together in this crazy, beautiful, daily struggle to grow up with HIV. I have been very frustrated by my lack of time and money to make this happen for them. But -- thankfully -- I have friends who want to stand in the gap for my kids and help give kids like Peter a place to find hope. I write this in the hope that you might want to join in too.

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Here are our brilliant plans...

Hadithi Handicrafts

I carried across the ocean some lovely items from Kenya. If you purchase Hadithi Handicrafts - made by hand by Kenyan artisans, many of whom have HIV themselves - we can start to build up what we need to make these groups happen for the HIV-infected children at our clinics.  A clinic needs at least $1,000 per year to run the groups that offer their kids a place to find hope for the future. I am hoping we can do that together.

"Hadithi" means "story" in Kiswahili. Our crafts have a story - they make it possible for Kenyan children to understand how HIV is just one part of the story of who they are and who they will become.

Aimee Carroll is selling hand-beaded leather sandals and beads shaped by hand from Kenyan clay and fired in lovely colors. If you are interested, contact her about the Hadithi Handicrafts. We can even have made items in the sizes and colors that you prefer.

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(Yes, I seem to be the daily model for our beads. Look how versatile they are!)

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#ThePocketSquareProject

And we have an option for men too! The dapper Dom Draper is spear-heading #ThePocketSquareProject with bright kitenge pocket squares for the well-dressed gentleman. What is more fun in men's fashion than a colorful pouf of a pocket square in your jacket pocket? (Ok, I am also a big fan of the bow tie, but we'll start with pocket squares for now.) Fun squares of crazy and colorful Kenyan fabrics.  If you aspire to join #ThePocketSquareProject, talk to Dom.

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All proceeds from any Hadithi Handicrafts we sell go directly to supporting AMPATH support groups for adolescents with HIV in Kenya. You can also donate at ampathkenya.org/donate and indicate "Vreeman Hadithi" or "The Pocket Square Project" in the memo or comment section.

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You can help us give our kids in Kenya hope -- and a home. You can help our kids go far.

Posted at 12:05

Let us show the world.

When you do work related to HIV, you are reminded every day that life hangs in the balance. Every day is a life-and-death struggle against a virus that threatens to kill 35 million people around the world.

 

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I love the opportunities to be with my colleagues at meetings like the AIDS 2014 meeting of the International AIDS Society because, not only do we have so much to learn from each other about how we can best fight against this virus, but also because it is very good to be in community with others who are fighting this same fight. We encourage each other; we push each other on in a task that often seems too big, too heavy.

Of course, we have been dealt quite a new blow as we gather for this AIDS 2014 meeting.

As the world was shocked by the lives lost on the plane shot down over Ukraine, we were particularly shocked to learn about our colleagues in the world of HIV who were among those killed on that plane. I was already here in Melbourne for the international pediatric HIV workshop that precede the main AIDS conference, and we started our very first session hearing that mentors and colleagues were among those killed.

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In particular, we have been struck by the loss of Dr. Joep Lange, a former president of the International AIDS Society. Dr. Lange was a clinician, a researcher, and an activist who led key research in how we treat HIV infections and was pivotal in convincing the world that HIV really could be treated in every corner of the globe. Pediatricians like me are very aware of his studies that helped us figure out how we can prevent the babies of HIV-infected mothers from being infected. In places like Kenya, he also transformed methods of health insurance and drug access. An amazing man, and one who will be deeply missed.

Our group is in mourning, both collectively and with the rest of the world. It has been my privilege to be able to honor our colleagues like Dr. Lange by talking about that mourning more broadly.

In many ways, we are a group that is used to mourning. We are a group that is used to translating our losses into deep motivation to keep fighting this life-or-death fight against this virus that threatens so many more people. The names of those who have died from HIV that are listed on the walls of the exhibition hall displays go on and on and on. My colleague tells the story of just how few of her fellow HIV-infected activists are still alive to talk about what these medicines mean for them. I wear a necklace of red clay beads that was made by a Kenyan woman named Mary who died from her HIV almost half a dozen years ago. As I present my research here and meet with colleagues and explore ways to provide better care for children with HIV, I am acutely aware that we need to do a much, much better job of this because I have lost over 50 children in the past year. We are a group that has lost friends and family members, colleagues and community. This week and over these past decades.

So, we continue as we have before. We remember and we fight. And as we just heard at the official opening ceremony of AIDS 2014 from Francoise Barre Sinoussi, "Let us show the world that neither brutality nor hatred should stop us."

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Posted at 21:22

Hunger

Nadine Gordimer, a South African novelist, died yesterday.

At Cornell, I took a class called "Fictions of Apartheid" that opened my eyes to what injustice and cruelty and poverty looked like in South Africa. Gordimer's writings were an important part of that class, and she deserved her Nobel Prize for how her stories conveyed the complex, terrible, entangled social complexities of life in Apartheid.

 

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This quote from Gordimer particularly strikes me:

The truth isn't always beauty, but the hunger for it is.

I think this quote grabs me because it rings so true for what I see -- and what I write about -- in my work in Kenya. I often write about hard stuff on this blog: Children suffering from diseases that are easy to treat in a place where people don't live on a dollar a day. A virus that threatens to kill 3.4 million children and 33 million adults. What it looks like to bang up against a broken, incredibly unjust system day after day. What it means for a child to die because they live in a poor place.

These things are not beautiful.

But what is beautiful is what happens when we strive to shine a light on these dark and difficult things. I believe that, even when it is painful, it is beautiful when we open our eyes to suffering and injustice around us. And even more beautiful when we genuinely ask what can be done to make things right.

Posted at 03:42

"The group saved me"

When your child is infected with HIV, it's hard to hold onto hope for the future.

In a place like Kenya, most people still see HIV as a death sentence. Despite our medicines, despite the care system we have built over the past 10 years, despite all that we have learned about fighting back this virus into something that you can live with, people will still tell you that they think those with HIV are just going to die.

I spend a lot of time in clinic with families trying to impart hope. I try to explain that their babies can live. I explain that the reason it is so important to take HIV medicines every day is because the medicines will allow you to grow from a child into an adult.

"You can have hope for this child," I say. But, sometimes, our children are so very sick that even I struggle to believe it.

One of the great highlights of my time here in Kenya was the chance to meet with some of my oldest patients - children who have been infected with HIV since birth who have now grown into young adults. 18-years-old, 20-years-old, 22-years-old - every birthday is a cause for celebration.  Many of these children started receiving HIV treatment in our clinics when we first opened the doors for kids in 2003. I feel like a very proud mama when I see them.

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I gathered a bunch of these "old" patients so that we could learn from them about how best to help more of our children to grow into adulthood. We wanted to learn from them how to build in more hope.

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I am trying to figure out how to put into place better support services for our HIV-infected children who are entering adolescence. I think every clinic should have a peer support group for their adolescents, but only our main referral clinic has managed to have one. Even worse, all of our program funding for psychosocial support was cut, so we have no money to support these types of programs.

So, I am figuring out how to do it on our own, and I have a team of students and interns working with me over the summer who are developing curricula and resources for peer support groups that all of the AMPATH clinics could put into place for their youth. I think I can run adolescent support groups for a clinic for a year for about $1000. Pretty cost-effective for offering hope!

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We turned to our experts to teach us how to do this best -- these young adults who have made it through. How I love hearing their stories! How I love seeing them thrive! The kids talk about their own struggles through accepting their HIV diagnosis and taking responsibility for their treatment. They have walked through the loss of parents, the loss of siblings, the loss of friends. They have struggled against stigma and discrimination and fear.

And over and over again, they talked about how much the support group helped them. Their peers became their family.

"The group saved me," said one beautiful girl, over and over. "Without them, I had no hope. I even thought of suicide. Being with the others gave me a new family. They gave me a hope for the future."

These kids give me hope too. Here's to more support groups - and more and more of our kids entering adulthood.

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My American student team, our patient experts, and the staff from our pediatric referral clinic.
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We got a little silly! The other adult in the center is Lucy, the amazing nurse who spearheads our adolescent activities (and who is really responsible for these saved lives)
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Yep. They wanted a selfie in my car.
Posted at 01:58

Wordless Wednesday: Island Clinic

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Posted at 08:29

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