“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 12×12 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

Zimbabwe Rising

It’s always startling when you visit a developing country that is actually, well, developing. That’s Zimbabwe. When I visited five years ago, the country was teetering on the edge of economic collapse. Harare, the capital, seemed desolate. I half expected to see tumbleweeds blowing about, like some abandoned mining town in the Wild West. There was little fuel, little food, miles-long queues at the lone gas station that actually had gas, and long lines of people waiting at the bank doors, begging to withdraw their life savings before the currency collapsed. To pay for anything literally required bags of Zimbabwe dollars, which were fairly worthless. Each restaurant, if it had food, required a money-counting machine to “quickly” add up the plummeting currency.
When I arrived in Harare on Saturday, I was stunned at the transformation. I was greeted by my colleagues from the Zimbabwe Hemophilia Association, three men who have hemophilia. Downtown was bustling with cars, nice cars. I had never, in the three previous visits to Zimbabwe over twelve years, seen so many people out and about. Doors were open for business and shops and restaurants were selling. Most surprising was seeing the predominant US dollar being spit out of cash registers and hands like slot machines. Zimbabwe had embraced the US dollar as a major currency, and suddenly, things got better.
But not everything: life for those with hemophilia is still harsh and unforgiving. I was about to be reminded just how much.
Reality Shows
The ZHA Committee Welcome

Today, Sunday December 2, we had a meeting of the Zimbabwe Haemophilia Association (ZHA) at my hotel, the Rainbow Towers in downtown Harare. The committee members quietly presented a still grim picture of life with hemophilia: Zimbabwe is totally dependent on factor donations, and in the past year ten patients died from lack of clotting factor. Unemployment still hovers are 80% and most of the men with hemophilia cannot get jobs. With a show of hands, five of the eight at the meeting were not presently employed. There is only one hematologist in the entire country, in Harare. One. And she’s Cuban. Seriously, God bless the Cubans for sending their doctors out in the world as part of their public health policy.

No one from Harare has been to Bulawayo, the second largest city, since 2007, when I last visited there and brought two committee members with me. Reason? Lack of funding. In fact, lack of funding impacts everything. So the ZHA has plans and dreams but can scarcely carry them out. The lack of funding is demoralizing and hangs over everyone like the sword of Damocles. But the ZHA is tenacious; the members just won’t quit. As one confided, they may wish to walk away, but they would leave behind the deaths of dozens of people on their souls, for without the ZHA, no one would care about the children with hemophilia in Zimbabwe. And these children are slowly being tortured, by an ancient disease that is relentless, senseless and crippling.
Solitary Confinement: George’s Story
Each visit to a developing country is not complete until I witness: this means I go out into the “field,” whether it is literally a field, farm, megaslum, or inner city barrio; anywhere there are patients living, struggling to survive. I need to immerse myself in their world, if only for a day or even a few hours, to know how they live. How can we help if we don’t understand how they live?
Simbarashe Maziveyi accompanied me. Simba is a young man with hemophilia who is articulate, thoughtful, and as soft spoken as he is determined to change hemophilia’s destiny in Zimbabwe. He is president of the ZHA and has severe factor VIII deficiency. I met him first in 2000, during my first trip to Zimbabwe, when he was only 19, a fresh-faced college student. We’ve been in touch ever since as he was groomed to one day assumes leadership. Simba recommended that we go to see George.
Roadside Vendors
Colorful and Curious

Just 20 minutes outside the electrifying energy in Harare, a subtler tragedy emerges. We drive past roadside shops and trading centers, colorful and crude. Here, vendors hawk the items they purchased in South Africa to sell to pedestrians; and so many in Zimbabwe seem to walk everywhere. On the outskirts of the capital, the highway eventually stretches before us as we pass “Goat’s Place,” a sad, miles long cemetery, simple and rural, dotted with grey headstones, so nicknamed because next to it is the market where goats are sold. Roads taper down to dirt roads on our quest to find George, a 20-year-old with hemophilia. The sky, so unnoticed in the sensory overload of Harare, becomes startling large and piercing blue with puffy clouds, like an anesthetic beckoning to look up and not down at the suffering.

Rural Africa
Zimbabwe means House of Stones

We stop briefly and in hops a smartly-dressed lady and her daughter: this is Judith, George’s sister, who will show us the way. George doesn’t have an actual address. As we turn down another dirt road, Simba points out the distant city ahead, Chitungwaiza. As I struggle with the Shona language pronunciations, he tells me “Chi Town” will do nicely. It reminds me of the scene from “The Mummy” when the adventurers first spy the far off city of Hamunaptra, where their fate awaits. Like military ramparts, large hills of dazzling rocks both distract from and guard the city. I have a sudden urge to put on my rock climbing gear.

Drought stricken Maize

A sharp left and we rattle down an uneven dusty road, our driver Andrew taking care not to damage his car. We park and hop out. It’s hot. The dirt crunches beneath our feet and I realize we’re stepping on dehydrated maize. Despite being the rainy season, the ground is thick and hard, cracked and muted. The maize is either ankle high when it should be thigh-high, or it’s nothing, dead before it could even sprout. I feel like I am on the edge of the Sahara; how did the topography change so drastically so quickly?

We walk a bit to two thatched, circular dwellings; this is where George lives. He hobbles out of the mud home, on one crutch, left leg permanently bent at an almost 45 degree angle. Simba tells me the one crutch was an improvement; when they first met, George was using a hoe as a crutch.
Laurie interviews George

George is smiling, displaying a gorgeous, perfect set of teeth, like most Zimbabweans. But he gets shy, and almost embarrassed. Perhaps because of our age differences, or that I am an American come to visit him. Simba’s comfortable style puts him at ease. We interview George to learn more.

George in front of his house

He lives in these two tiny, mud dwellings with his 17-year-old brother Simba. One is for cooking only. The other, which cannot be more than eight feet in diameter, is for sleeping. His parents are dead. He has four other brothers and two sisters. His sister Judith, the one who came with us, oversees his care. But she lives four kilometers from him. How does he get by? He farms a little, seemingly impossible given the state of his leg. He simply cannot walk without a crutch and barely can walk with one. A nearby well supplies water; there is no electricity. (Try to imagine life with hemophilia, without any electricity. Just try)

George contemplates his future

George is solemn as he shares. This is a young man who has suffered. Loss, pain, deprivation and uncertainty about a future.

George’s leg cannot straighten

What does he do when he has a bleed? He must hobble to his sister’s place, four kilometers away. As if that wasn’t bad enough, he must cross a footbridge. The bridge is in ghastly disrepair. Originally the land was owned by a white farmer, as much of the land in “Rhodesia” used to be. Independence came for black Zimbabwe in 1980, when Mugabe came to power. In 2001, during the very week I was there, Mugabe decided that there would be land “reform.” Black citizens could now reclaim their lands from white farmers, even those who had legally held family farms for 100 years and had provided the agricultural revenue that earned Zimbabwe “the breadbasket of Africa.” The guy who owned this land I stood on was one of them, and he was not happy. Before he abandoned his land to the black citizens who came to claim it, he left a little present behind. He bombed the stone footbridge. George now has to navigate this treacherous passing each time he has a bleed.

George and the bombed out bridge

He then spends the night at his sister’s, and in the morning goes to Harare, to wait at the hospital for help. By then a lot of damage has been done to the bleeding joint.
George and mentor Simba

The family hopes to get George started in some business, maybe selling chickens. Poultry sells well in Zim, and it wouldn’t require the manual labor that farming does.

Before we leave, the rest of George’s brothers show up. One has perhaps had a bit too much of “Zed,” the potent, illegal brew that is bootlegged from Mozambique to the disenfranchised in Zim. It’s a killer, literally, and is nicknamed “Zimbabwe Early Death.” Later, when Simba and I stop at a grocery store to pick up staples as a gift for the next family we visit, two men loaded on Zed start harassing the women in the cashier line. In their hands is a bottle of whiskey—as if. I have to push them back, out of my private space as they are breathing down my back literally and making comments. Usually Zimbabweans are the most civil and polite of people I have ever met, but Zed makes these two guys dangerously uninhibited.
Time to go and visit another family, and George’s visit puts a sad touch to the day. But a decision is made: we need to get him enrolled into Save One Life, our nonprofit that sponsors children with hemophilia in developing countries. If ever there was a candidate for Save One Life, it’s George.
George awaits a Sponsor

Yet there’s a touching ending to the day: I hand George $100, a fortune, and a gift from Cindy of Hawaii. Cindy volunteered her honorarium in one of our market research studies, to give “to someone in need.” It’s nice to know a young mom of a child with hemophilia in Hawaii can impact a young man who is almost in solitary confinement half way around the world, in a rural village in Zimbabwe.

As we pull away in the car, Andrew, the driver begins peppering Simba with intelligent questions about hemophilia, from the symptoms to the genetics. And finally, “How did you make it so far, without much medicine?”
Simba smiles, as he is not one to complain. “Faith,” he says. “Mostly faith.” A family of chickens cross the road in front of us. The hen has eight little chicks in tow, but the last one, for whom we have to stop, is lame in one leg, and cannot walk well. As it struggles over the drought-stricken ruts in the field, I say, “Like George.” We smile sadly and drive on.
 Return in a few days to read about Monday: A meeting with the Health Minister of Zimbawbe, and a visit to see Vincent.

Khumbs


Thanksgiving Day last Thursday was celebrated all across America but it was a sad day in Zimbabwe. We lost another young man to hemophilia, Khumbs.

Khumbs was very special to me. I first heard of him in 1998, when he was only eight years old. He was about to lose his leg after an ankle bleed became infected. It was a risky procedure because there was (and still is) no factor available in Zimbabwe. We tried to ship product as quickly as possible, to try to save his leg, but it was too late. In 2000 I traveled to Zimbabwe, and met little Khumbs at his home in Bulawayo, Zimbabwe’s second largest city, which always reminds me of New Orleans. He was charming, with a big smile. His mother had died recently. Loss, then more loss. Zimbabeans are used to losses.

In 2001 we held the first-ever hemophilia camp in Zimbabwe, named after one of the founders of the Zimbabwe Haemophilia Association, Norman Mubaiwa. 65 children who all come from impoverished homes attended. It was held at the Hwange Safari Park, and for the first time in their lives, the Zimbabwe kids got to see their native animals. Zebras, giraffes and wildebeests all came to the watering hole at dusk. Khumbs followed me around everywhere at that camp, smiling his infectious smile. On spindly crutches and one leg, he scuttled about, always tailing me. He didn’t speak English, only his native Ndebele. When I would turn and look at him, he’d get shy and smile. Later on, I saw him sitting by the small inground pool. I motioned for him to go in but he was too shy. Zimbabweans are so polite and sensitive. When I insisted, he finally believed me and next thing I knew, he shucked off his pants and jumped into the pool in his underwear, not at all conscious of his stump. He had a blast!

I took a photo of Khumbs at that camp, and his smile summed up the joy I have seen in children worldwide when they go to camp. He was beaming. I took that photo and had it digitally enlarged and processed like an oil painting. I hung it on my wall so that Khumbs’ smile was with me every day.

I returned to Zimbabwe in December 2007. Conditions in the country had deteriotated unbeliveably. 80% unemployment, one million percent inflation, food shortages. I returned to Bulawayo, not an easy task given the lack of gasoline; it’s a five hour ride from the capital. We visited Khumbs again. He was so tall! And so healthy looking! His wonderful uncle took Khumbs and his brother in, after their father died. More loss. Khumbs was perched on the same pediatric crutch that he had been using, which was now patched. After our happy visit, I went off to look for a new crutch.

We found Khumbs a sponsor and he became our first enrollee in Save One Life. This program provides financial resources each month for children with hemophilia in the developing world. His sponsor was Jill Smith, a hemophilia nurse from Australia, who had traveled with me to Zim in 1999. She had met Khumbs, too.

How shocking to awaken on Thanksgiving morning to a text message from Zim saying: “Khumbs is gone. We are devastated.” More loss, always more loss.

Khumbs’ picture will forever stay on my office wall, a snap shot of a time when we gave a brave little boy who had lost almost everything the most wonderful time of his life–hemophilia camp. And now, we are the ones left with the loss.

(If you’d like to sponsor a child like Khumbs, please visit http://www.saveonelife.net/ Despite his loss, we are saving lives!)

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