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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.

The ZHA Committee Welcome
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

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.

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.

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

George and the bombed out bridge

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.

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.

Adrenaline Junkies, Take a Hike

At Thanksgiving last week, my family gathered for dinner and in swapping motorcycle and adventure sport stories with four of my six brothers, someone remarked about the “adrenaline junkies” in the Morrow family (my maiden name). True, but I reflected our hemophilia community has a few of those as well. This summer we watched Barry Haarde bicycle 3.677 miles across  America to raise funds for Save One Life, my nonprofit that supports kids with hemophilia in developing countries. And we saw Eric Hill and Jeff Salantai of BioRx scale Pico Duarte, the highest peak in the Caribbean, to raise money for the Dominican Hemophilia Camp, which Save One Life supports.

And last year I summited Mt. Kilimanjaro with eight others, including Eric and Jeff, to raise over $66,000 for Save One Life. Now, Barry and I just jumped our of a plane last week at 18,000 feet, but we didn’ raise any money–it’s an idea, though!
But you don’t have to be an adrenaline junkie to help support a good cause. Try walking!
Bayer has just announced the winners of its virtual walk, a successful fundraising efforts to help hemophilia chapters and–I am grateful and proud to say– also Save One Life. (www.saveonelife.net)  See below, register for next time and then… take a hike!
The 2nd Annual Virtual Walk for Hemophilia is  proud to announce the top 5 participating local National Hemophilia Foundation (NHF) chapters who rallied the most virtual walkers!
First Place with $15,000 in sponsorship funds:
Arizona Hemophilia Association
Second Place with $10,000 in sponsorship funds:
Bleeding Disorders Alliance Illinois
Third Place with $5,000 in sponsorship funds:
Texas Central Hemophilia Association
Fourth Place with $2,500 in sponsorship funds:
Nevada Chapter, National Hemophilia Foundation
Fifth Place with $1,000 in sponsorship funds:
Nebraska Chapter, National Hemophilia Foundation
We, at Bayer, are delighted to provide these chapters with sponsorship funds to continue their hard work in supporting the bleeding disorder community.
Furthermore, we are privileged to present the National Office of the NHF in New York with $30,000 in sponsorship funds to assist them in continuing to improve and enhance the lives of those who live with bleeding disorders. And we were able to provide $7,000 in sponsorship funds to Save One Life, a non profit organization that offers the opportunity to sponsor a child or adult with a bleeding disorder in a developing country.
Thank you again for making this Virtual Walk possible!
©2012 Bayer HealthCare Pharmaceuticals, Inc. All rights reserved.
BAYER and the Bayer Cross are registered trademarks of Bayer.
4/12 KN09001812

Uniting Globally

Untreated bleed, Dominican Republic

I attended the annual National Hemophilia Foundation meeting from November 7-11,
as I have done since 1992 faithfully. As usual it was filled with interesting
sessions on treatment of hemophilia, attractive displays of company booths and
wonderful reunions with many friends and colleagues. But something new: in his
opening speech, NHF CEO Val Bias, a man with hemophilia and one of the foremost
advocates in helping to get the Ricky Ray Law passed, spoke about uniting our
communities globally. This is the first time I believe that NHF has shown a
targeted interest in helping the world’s 75% with hemophilia who have little or
no access to care.

Laurie with Nancy S., who has a child with VWD

This was exciting to me as I have been working to help the underprivileged with hemophilia since 1996. First with a leadership training program called
L.I.G.H.T., then a factor donation program called Project SHARE, still ongoing,
and my nonprofit Save One Life, which sponsors children overseas. I was
thrilled that NHF would bring its resources and brainpower to help those in
need.

Why not before now? Timing, focus. We have been through many phases: the contamination of the blood supply and subsequent infection of thousands occupied our time and focus for years. Then came product shortages. The inhibitors. Even NHF had its own problems internally and struggled to assess leadership (CEOs came and went) and structure. That seems behind us now. And with Val’s leadership and vision, NHF turned its powerful eye overseas, especially to Africa.
Val Bias and Neil Frick visited Nigeria in September, marking the first time that someone from NHF has been to Africa! I’ve been traveling there since 1999, when I first visited Zimbabwe and Kenya, and am returning on November 30. Finally, finally America is showing its leadership and true giving nature in joining the international community and participating in partnerships that will help
hemophilia nonprofits and its members in developing countries.

Meeting FB friends: With Liz Purvis and Tater!

Val has bigger plans: the 2016 NHF meeting will be held in Miami, and Miami was
also selected for the 2016 World Federation of Hemophilia biennial meeting.
This means that attendees to either meeting can also extend their visit and
join the other meeting. WFH gets about 4,000 visitors and NHF gets about 2,500.
This would potentially be the biggest meeting on hemophilia in history, and on
American soil.

I really applaud NHF becoming involved globally. The world needs it and it’s good
for us. I’ve always felt that we have more than enough to share, if we can just
find ways to do it. With NHF’s power, hemophilia care globally can progress at
a faster pace to reach more in need, an estimated 300,000 who suffer from this thoroughly
treatable disorder.

With Gary Cross (L) and Dana Kuhn, of PSI

And looking at all the photos from NHF here, I realize that almost evey person pictured either sponsors a child with hemophilia or VWD in a developing country through Save One Life or has contributed in some way to Save One Life or Project SHARE. From summiting Kilimanjaro to raise funds, to making handicrafts that support a child, to sponsoring one directly, Americans have already been uniting globally—and now can take pride that their national organization will as well.With Reid Coleman of NC

Insurance Healthcare: Down to the Wire?

Well, not really. Yes, elections are Tuesday, and they are a nail biter. It’s too simple to say that if Romney wins, the Affordable Care Act will be repealed. And if Obama wins, the ACA and healthcare reform will continue. As Jim Romano of Patient Services, Inc. pointed out Saturday in Springfield, Massachusetts at our final Pulse on the Road symposia for 2012, no matter which candidate gets in office on Tuesday night, they will still need to contend with Congress.

Both men might face obstacles: Romney needs a majority in Congress and Obama faces a strong public undercurrent to revamp or repeal the Act. If Romney wins without a Republican majority in Congress, then the ACA and its Medicare provisions may continue to evolve.

Lisa Schmitt of New England Hemophilia Association with Laurie Kelley

But should Romney win on Tuesday with a GOP majority, he would have the political initiative and power to repeal the ACA. It’s possible Romney (and Paul Ryan) might push through Congress a structural overhaul of Medicare. With Obama, probably Medicare would be left as is.

Jim pointed out that the ACA was modeled after Mass. Governor Romney’s state heath care plan of 2006, which mandates that everyone in the Bay State have healthcare insurance, much as everyone must have car insurance to drive a car. The uninsured rate in Massachusetts dropped to 2%! But the jury is still weighing: In June 2011, the Boston Globe concluded that the healthcare overhaul “has, after five years, worked as well as or better than expected.” A study by the Beacon Hill Institute reported that the mandate was “responsible for a dramatic increase in health care spending.”

What will happen on Tuesday and its aftermath? Hard to say.
Just keep reading, review your own insurance policy carefully, stay in touch with your local
hemophilia organization and above all, VOTE on Tuesday! No matter what happens, we will
always need to keep advocating for our bleeding disorders community.

Hurricane Sandy: Are You Prepared?

The eastern seaboard is being pummeled by Hurricane Sandy, a fast-moving, major superstorm that thrashed Cuba, hit Florida and is currently striking the New Jersey shore (it’s been downgraded from hurricane to superstorm now). A 35 year old man in Queens, New York was killed by a falling tree; the New York City subway was shut down; and major airline routes,  heavily traveled in the east, were cancelled. Long Island is facing historic, life-threatening, massive flooding, which will paralyze services. New York airports are closed and all flights, thousands, are cancelled.

I am in Tampa, Florida and am now stuck here a few more days. But if you have to be holed up somewhere from a hurricane, Tampa is a great place to stay.

NHF is issuing email reminders to registered members to remember to be prepared for disaster scenarios. There are many things you can do as a bleeding disorder patient to be prepared for catastrophe.

First, know the geography and weather patterns where ever you live. California has many geographical faults that cause earthquakes. The midwest states of Texas, Nebraska and Kansas are dubbed “tornado alley” for their frequent and sometimes devastating tornadoes. The northeast has “nor-easters” every six years or so. And Florida absorbs hurricanes that often originate off the coast or in the Caribbean Sea.

In Boston, where I live, we know that September and October are hurricane season moths. Normally we are lashed with the tail end of a Caribbean-originated hurricane. We once had “The Perfect Storm,” a 1991 hurricane that struck on October 28, and became a massive killer. Damage was most severe in Massachusetts; the story became a movie of the same name, starring George Clooney.

It sounds like common sense, but be prepared if you have a bleeding disorder. The most important thing always is to ensure you have enough factor and ancillaries. When storms hit, you often are not able to travel, and face power outages. Your factor supplier may not be able to bring you factor, and you may not be able to contact them. I think always keeping at least 10-20 doses in your fridge at all times, and plenty of ancillaries. Keep candles and flashlights ready, with fresh batteries.

Know your local emergency numbers, in case you need to be evacuated due to your medical condition. Callers have overwhelmed 911 services, so you may not be able to always reach help when you need it. Charge your cell phone! And charge your laptop and any device that can help keep your cell phone juiced.

As soon as you hear that a storm is developing, even if it is in Florida and you are in Massachusetts, get prepared for a worst-case scenario.  Keep updated at Twitter through @CNNWeather!

Great Book I Just Read
Rabid: A Cultural History of the World’s Most Diabolical Virus by Bill Wasik and Monica Murphy
I love reading medical history books. This book traces the cultural implications of the world’s most insidious virus: rabies.  Nearly 100% fatal once symptoms exhibit, rabies travels directly through the nervous system rather than the more usual route of the bloodstream, allowing it easy access to the brain. Once there, it causes the host victim to be aggressive, biting animal or person who is hydrophobic, “afraid” of water. Tragic and deadly. The most prolific carrier of rabies? Bats.

The authors cover the role rabies has played in myths, legends, folklore and even movies. Rabies may be the origins for the legends of zombies, werewolves, and vampires; the first half of the book covers the history of its reputation (and dwells a bit too long on this, kind of losing its way). The second half is devoted to Louis Pasteur’s development of a rabies vaccine,  the only really effective method of stopping the virus, and is fascinating. Though the book is unevenly written, with gaps in the science, it’s nonetheless a good read and I learned a lot. Three/four stars.

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