Mandela’s Call: Fight HIV Stigma

It has been amazing this week to read all these remembrances and quotes and summaries of the greatness of Nelson Mandela. While he was clearly a flawed and imperfect human (like each of us), he was clearly a great man who brought about great things. I am especially amazed by how someone walks out of 27 years of unjust imprisonment into a legacy of forgiveness and reconciliation. Amazing.

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I am also struck by how he recognized the less-visible prisons that still restrain so many. Prisons of poverty, lack of education, stigma. Especially, I notice his attention to stigma.

The stigma of HIV imprisons so many of the families that I work with in Kenya. It keeps them hiding their medicines and hiding their diagnoses for fear of discrimination and losing all that they hold dear. It prevents them from telling their children that they are infected with HIV out of terror that those children might let this terrible secret slip out. It weighs their hearts down every day — until they believe that they should be ashamed, until they believe that they are dirty and unworthy and less than.

Mandela saw this stigma around HIV for the prison that it was. And he especially saw the vulnerability of the children – my children – children who are living with this virus in their blood or who have had their parents stolen by this virus.

“The stigma and discrimination inflicted on these children are atrocious and inexcusable,” he said. “Many people suffering from AIDS and not killed by the disease itself are killed by the stigma surrounding everybody who has HIV/AIDS. That is why leaders must do everything in their power to fight and to win the struggle against this stigma.”

Nelson Mandela said that back in 2002. And he didn’t just talk about it. He held babies with HIV. He made world leaders, old men who hold babies with the awkwardness of unfamiliarity, hold those babies too. I love it that he visited and held these babies with this virus. And that he brought the magnitude of his voice and his spotlight to the issue of HIV-related stigma.

Bill Gates said that this is what he remembers most and respects about Mandela: “This was something we talked about a lot every time we met: How could we fight stigma and spread reliable information about the disease?”

I love this. Bill Gates' father, Nelson Mandela, and Jimmy Carter -- all holding babies with HIV! Stigma-fighting at its finest.

I love this. Bill Gates’ father, Nelson Mandela, and Jimmy Carter — all holding babies with HIV! Stigma-fighting at its finest.

I’m turning to work in a major way on HIV stigma in the next few months. We’re starting with focus groups and discussions with children and parents and other caregivers in Kenya – all about how stigma in their communities and homes shape the experience of having HIV. We have talked about this a lot before, but we want to start to understand much better how stigma works in this setting. All because we want – we need – to lessen the impact of stigma for families with HIV.

“Atrocious and inexcusable.” Mandela called this stigma what it is, and I draw strength from his call that we must do everything in our power to fight and to win the struggle against this stigma.

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Giving Tuesday

On this spinning globe, there are 3.3 million children living with HIV right now. Today. 90% of them live in sub-Saharan Africa. My work in Kenya focuses on how we can improve medical care for HIV-infected children in Kenya and in the world’s other poorest places.

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With the right combination of medicines, taken every single day, children with HIV can not only survive, but thrive into adulthood. It’s my goal to help thousands of families meet that challenge. I have the great privilege of working with the AMPATH partnership, a collaboration between North American medical schools and a Kenyan medical school that currently cares for over 150,000 people living with HIV in western Kenya.

For these children and adults, the care that AMPATH provides means life. I say that in all seriousness as a scientist and myth-buster. Without the AMPATH program, thousands of lives would be lost.

If we are going to help the world’s 3.3 million HIV-infected children grow into the teachers and scientists and world-changers of tomorrow, we need to make sure that they have access to HIV medicines and that we address the long-term challenges of taking these medicines.

Consider supporting AMPATH on this Giving Tuesday. You can help families in poor places stay alive — and you can help us learn how to give more children more birthdays.

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World AIDS Day: Faith

Every World AIDS Day, I write about Faith. December 1, this day that we celebrate World AIDS Day, was Faith’s birthday.

I wish that Faith was alive today to turn 13.

Faith was the first child under my care who died from HIV. She was my patient on the wards of the referral hospital in western Kenya in the fall of 2004.

Faith was 4-years old, and she only weighed 4 kilograms – about 9 pounds. I had never seen a 4-year-old child like Faith before that day, a 4-year-old who weighed less than some newborn babies.

Four-year-olds are usually my favorites. They are full of imagination and spirit, confident in their new skills, and eager to tell you all about what makes them excited. Four-year-olds are not supposed to look like Faith looked. The HIV virus had stolen all of Faith’s energy as it destroyed her body’s immune system. The HIV virus was stealing away Faith. She was beautiful, but broken.

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Faith’s mother had worked very, very hard to get her daughter to the referral hospital. Faith had been sick many times in her short life, and her mother knew the village health clinic could not make her daughter healthy. She scraped together every bit of money she could gather from her extended family in order to take Faith to the far-away referral hospital. You can see in the photo how happy and hopeful her mother looks. She is pleased she managed to get her daughter to this hospital.

Faith died two days after she was admitted to the hospital. Our medicines, our fluids, our nutritional support were all too little, too late. We could not save her. I could not save her. I remember her last breath, and that memory still brings tears to my eyes. Faith taught me my first real lesson in how HIV steals children’s lives.

After Faith died, her mother kept thanking me for this photo that I had taken of Faith. She did not have any other pictures of her daughter, and she was grateful to have this one. I felt terrible when she thanked me. I felt like I failed because I could not keep Faith alive. What was a photo in the face of the loss of a 4-year-old daughter?

I wished that I could change Faith’s story. I still wish that. I wish Faith was alive to turn 13 on this December 1, on this World AIDS Day. I wish we all could know Faith today, even as exasperating and difficult as 13-year-old girls can sometimes be.

We have lost so many Faiths. 210,000 children died from HIV last year. 210,000 stories we will never know. 210,000 birthdays that will not be celebrated this year.

When I took care of Faith, I did not realize that my life’s work would become trying to change the stories of children living with HIV in the world’s poor places. I did not know I would one day be caring for over 24,000 Kenyan children just like Faith through the AMPATH program. I did not know that I would find spend every day trying change the stories of children with HIV around the world into stories of health and hope.

3.4 million of the world’s children are living with HIV on this December 1, 2013. And only ONE-THIRD of those children have access to the medicines that they need to stay alive. Two out of three children with HIV will not get the medicines they need to continue to celebrate their birthdays. Without treatment, HIV will cut short the stories of two out of three of these 3.4 million children. That is not acceptable.

I want more birthdays for more children. We could have kept Faith alive if she had been able to enroll in one of our HIV clinics and start the medicines for HIV before she got so sick. We could have given her many more birthdays. On this December 1st, the AMPATH program in Kenya has 8,000 Faiths alive and growing and taking these medicines through our clinics. And we are learning how to provide the best possible HIV care for children all over the world.

On Faith’s birthday, I want the world to demand more birthdays for more children. We know how to do it. We can keep children with HIV alive. We just need to try.

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Thankful: Joy (a reprise)

Laughter is eternity
If joy is real

- U2

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I was pretty worried that Micah was not going to make it. When I first saw him in the AMPATH HIV clinic, he was one of those children who made me angry about the injustice of one little body bearing so many burdens. Cerebral palsy and HIV and a reactivation of chicken pox infection that was crippling one of his eyes.  To make matters worse (if you can imagine worse), his father had died a few months before and his mother was having a terrible time scraping together enough food for her family of three to eat. Micah’s already-burdened body was frail and weak because he was lucky to get one meal a day.

Micah’s little body exposed the limits of what we can do. We cannot take away his HIV or his cerebral palsy. We cannot restore his sight in that eye. And, of course, we cannot bring back his father. I hate all of that.

But we fight within our limits: Medicines to make his virus sleep.  Therapy to help him get closer and closer to walking. Food rations to let him and his family grow strong enough that his mother could return to work and he could sleep without an aching belly.

Even when we bang against our limits with angry fists, there is beauty if you look for it.

When I dropped by Micah’s house this weekend for a visit, my eyes filled with tears as he hugged me with a big smile and managed to say, “Daktari Rachel!” A neighbor in their shanty compound was playing loud lingala music, and Micah laughed and laughed and laughed as I danced him around the yard.

Joy.

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Thankful: Water

My biggest culture shock happens in the bathroom.

As I head back from months in Kenya, I inevitably have moments of surprise and wonder as I re-enter a different world as epitomized within the women’s restroom. The toilets have seats! There is toilet paper in every stall! And the toilet paper is so ridiculously soft and plush!

And it gets even better. There is the amazing luxury of a well-functioning tap from which water runs. Not only can I easily wash my hands, but this water even gets hot and cold! And – wait a minute – I could drink this! The shock of amazingly clean, perfectly drinkable water flowing from every tap still bowls me over for a moment.

I could drink this water straight from the tap of every sink in the Amsterdam bathroom. I don’t need to boil it and filter it and put it in my own bottle. I don’t even need to buy it. Amazing!

(I am well aware of the number of exclamation points in this entry, but toilet seats, toilet paper, and CLEAN WATER EVERYWHERE are absolutely punctuation-worthy!)

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In many parts of the world, a tap with running water is a luxury. And clean water everywhere — water that won’t make you sick, water that won’t kill your babies – this is the stuff of dreams.

Most women in Africa walk for their water. The 40 billion hours a year that Africans spend walking to get water is mostly the work of women and girl children. Walking to the river, walking to the stream, walking to the borehole where the nearest water flows. Sometimes, walking for miles.

And still, this precious water too often contains diseases that will make them sick, diseases that will kill their babies. 800,000 children dying every year from diarrhea. Only 60% of my neighbors in Kenya have access to “improved water sources” – and that’s still water that should be boiled and filtered.

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AMPATH operates a safe water project that works to give more of my neighbors in Kenya access to clean water by opening stores that sell ceramic water filters, spear-heading well drilling and refurbishment projects, and training communities about safe water.

At safe water (Maji Safi) shops, families can get high-quality ceramic water filters that can put an end to their constant boiling. The filters are a big investment for a family, but the safe water department believes this helps them value the filters and treat them with care.

On a bigger scale, they work on projects like wells for communities and functional taps for our rural health centers and hospitals.

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I am thankful that I can go into virtually any bathroom in this country – not to mention all of the kitchens – and get a glass of clean water. Drinking clean, beautiful water in thanks.

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