Blog Archive

Sunday, December 09, 2012

“Human pieces of geometry”: Brian of Zimbabwe


With Dr. Timothy Stamps,
personal health advisor to the president
I’m actually in Zambia, Zimbabwe’s huge neighbor to the north, having a hot tea on the deck of my lodge room on the banks of the Zambezi. The sun is a scorcher today, the air humid as if someone dropped a huge, wet blanket over the atmosphere. While I see Africa’s beauty before me, I’m haunted by the image of an African boy in Zimbabwe. Though I left Zimbabwe on Wednesday, my mind still drifts back, wondering what to do.

I visited Zimbabwe from December 1-5, and Zambia from the 5th-10th, tomorrow. I’ll write about Zambia next Sunday and finish Zim here.

ZHA members with Mr. David Mvere, dirctor
of National Blood Transfusion Services
The Health Minister was unavailable to meet, but we did get to meet with the personal health advisor to the president, the charming Dr. Timothy Stamps, who I have met twice before. We chatted about hemophilia, and it’s good to have someone like him in government who knows about it. But even more important, we have the National Blood Transfusion Service, which is really the backbone of hemophilia care in Zimbabwe. David Mvere, the director, is an advocate for those with hemophilia—and always ready to help us when we have product to donate. I’ve met him several times over the past 12 years. We will work together to see if we cannot move hemophilia care forward in 2013. What’s needed is a national “tender,” in which the government advertises that is has so many dollars to spend on hemophilia products. The drug companies then bid for the sale, keeping their proposed price tags secret from one another so the government can take advantage of the lowest price/highest quality drug. Zim hasn’t had a tender in almost 20 years, I think.
ZHA, Laurie and Dr. Dyana (center) at Parirenyatwa Hospital

The rest of my time in Zim is spent advising the Zimbabwe Haemophilia Association on best practices and providing an assessment of what they need to function more effectively and produce results.

And then, there are the hospital, home and family visits. Last week I told you about Brian, an orphan who lives in a mud walled, maize-thatched circular room outside of Harare. We also stopped by the Parirenyatwa Hospital, the main public hospital in Harare, where some patients go for treatment. Little Brian had been admitted. Simbarashe Maziveyi, the ZHA president, chatted with him in Shona, the native language to learn more about his case.  Simba would have made a great professional counselor; his calm demeanor, listening skills and reassurance touch everyone.

Simba, ZHA president, counseling Brian
We meet with Dr. Dyana, the Cuban hematologist who chose to stay in Zimbabwe to help cancer and hemophilia patients. Thankfully she did because Zim suffered for many long years without a single hematologist in a country of approximately 500 patients.

Then we drove out into the bustling Harare traffic (that’s a good thing here! Shows progress) We visited Vincent, a 33-year-old with hemophilia, who also happens to be a Save One Life beneficiary. He lives with his wife and small daughter in a 12x12 room---just a room—with all his worldly possessions: a small TV, some clothes, a few books. He has not worked since January, and you can see the anguish in his face. How do they eat? Where do they get money from? Save One Life gives him some cash. His sister lives nearby and helps out. But they are desperately poor. Vincent does own a bicycle, which he proudly shows me. He can bike to the treatment center when he has a bleed.

This must sound absurd to the average American with hemophilia! But it is a survival tactic in Zimbabwe. And when Vincent gets to the treatment center at the Parirenyatwa Hospital, there usually is no factor, of course.

We drive to see Nhamo, a 41-year-old man who has come from very far away by bus. He’s had an ulceration and bleed on his left hip for months. The tissue has died and needed to be cut away. The wound can’t seem to heal and there’s no more factor. He’s now staying with his sister in a small room on someone else’s property. His crutch is homemade--a stick. He can’t work, can’t heal… this story is repeated many times in Africa. Luckily, we do have factor for him. Then he shows us his hospital bill: $2,500+ dollars.

Simba interviewing Nhamo
Talk about out of pocket costs: how is a destitute guy from a rural area ever going to pay this off? Might the hospital refuse him treatment if he doesn’t pay? Maybe. Simba pledges to go talk to officials on his behalf. This is really the value of going to visit patients. The founders of the Flying Doctors of Africa (now AMFAR) once said that if you want for patients in Africa to come to you, they’ll die; you need to go visit them. I take that to heart.

Last stop of the day is Tanaka, from a family I have known for 11 years! Tanaka is adorable, charming, bright. And a hugger. Hugs are not a real tradition here, but Tanaka sure loves it. The whole family and I embrace one another at our reunion. They present me with a beautiful blanket with an elephant on it. Tammy from Texas sponsor Tanaka, and the money really helps him. Tanaka flashes me his trademark megawatt smile when it’s time to leave.

Tanaka gives his sponsor a gift!
On Tuesday we have a patient meeting, with as many families as possible in attendance. Some have come from hours away by bus. Many are in pain, seeking relief. Some of the moms are single, and confide their fear about how to get financial relief, and how to treat bleeds. Someone asks about a cure; another about gum bleeds.

One enormous obstacle in any developing country is infrastructure, particularly transportation. Even if factor were available, many cannot get to it as they can’t come to Harare each time their child has a bleed. I’m convinced the only solution long term is home therapy, which doesn’t exist in most developing countries. As many of the moms nod their heads, we ask for a volunteer among them to organize a home-infusion training day. It’s a go, and the moms pledge to get together; the wife of one man with hemophilia is a nurse and she offers to be trainer. It’s a positive thing to at least start with.

Vincent and family: out of work but
not out of hope
On Wednesday, as I prepare to leave for the airport, Simba begs just one more visit. Often it’s when I am feeling tired, burned out just want to get on with the next leg of the journey or even go home, that the most important child is met. This happened Wednesday.

We drive back to the Parenireyatwa Hospital, to the front of the shed where the ZHA offices are. There sits a little boy that immediately brought to mind the words of Frank Schnabel, founder of the World Federation of Hemophilia: that patients with hemophilia were “human pieces of geometry” stuck in a wheelchair. Only this little triangle boy didn’t even have a wheelchair.

Brian is 13, but only weighs 25 kilos, about 50 pounds. Malnourished, in horrible chronic pain, he sat in the brilliant sunlight with swollen feet, four grotesquely swollen fingers, withered biceps—I could touch my forefinger and thumb around them easily—huge elbow joints (or was that an optical illusion due to the wasted musculature?). His face registered such pain; and he was wearing a Jim Morrison t-shirt, as if he knew I was a huge Doors fan and was desperate to get my attention.

Brian steals our heart: he's an orphan,  can't walk,
or lift his arms and is in constant pain
My heart broke for this child, an orphan, being raised by his grandmother in a rural village, where he will no doubt be blamed for this disorder because of witchcraft. When I asked Brian to lift his arm, to see if he could at all extend it, he had to lift it at the shoulder, but lacked the muscles to lift his arm, and was prevented from searing pain.

I have never seen a child tortured before, but this was as close as I could imagine to seeing it. Simba, voice calm and soothing, elicited the necessary information, and we arranged for Brian to be admitted at once, and provided the factor. In the States, Brian would face months and months of treatment, nutrition and rehab. A Facebook posting that night led to three families wanting to adopt him, and more who want to sponsor him.  We even asked Simba that night, but no. “His family could not possibly part with him,” he texted.

Laurie, Simba speaking with Brian's sister, "Beauty"
It’s comforting to know that Brian is loved, but it eats at us that our children in developed countries enjoy every benefit of medicine and can lead normal lives. Brian is stuck in a time-warp: care will come to Zimbabwe, of that I am sure, but not perhaps in time for this one precious child.











A great goodbye from the Youth Committee of the ZHA


2 comments :

Anonymous said...

Thank you so much Kelly for doing such great work and making the world aware of hemophilia.

Brad Nolan said...

Hi Laurie. Thank you for your passion. My family is willing to help. I will call you after New Year's day.

 
Bayer