April 2010

Simon’s Story

Red dirt of Kenya
Rift Valley

Today we met a very special person with hemophilia, who touched us deeply, and reminded us of why we do the crazy things we so—like driving about three hours outside of Nairobi, deep into the Kenyan countryside just to meet one patient. Well, this is why we call our nonprofit “Save One Life.” It’s all about one person at a time.

You cannot separate Simon’s story from the logistics. Sure, he has hemophilia, as does his brother. He’s 26. His wife left him, and he now lives on his mother’s farm. He has the usual untreated bleeds, and hobbles about on crippled legs. We wanted to meet him because we knew he lived in difficult circumstances. Total rural living; you might say primitive, if you judged him by the average American standards.

We headed out at 8 am with Maureen Miruka, founder of the Jose Memorial Hemophilia Society, driving. With us were Paul, a 21-year-old with hemophilia, impeccably dressed as always, and Jeff, our videographer. They picked me up at the Holiday Inn, and off we went.

Over two hours of driving on a highway, dodging the worst potholes you can imagine. The shoulders of the road drop swiftly, so we have to be careful not to veer off. It was like a high-speed obstacle course! Left, right, fast, slow, then the random speed bump. The speed bumps (or “sleeping policemen”) are not marked, and so blend in with the road, and can cause severe damage. The ride seemed to take a lot longer than two hours.

We took a short break to see the breathtaking Rift Valley, 3,600 miles long, and an important source of fossils.

We arrived in Nyahururu, far north of Nairobi, a bustling town. As always, the Kenyans are dressed well, and walking, walking, walking. It seems that everyone walks in this country. I was surprised to see a long line of young men with motorcycles, just waiting. This was local transport, and in a minute I would find out why.

We spotted Simon under a gas station sign, waiting for us. I gave up my front seat when I saw how painfully and slowly he was walking, to give him more room and excluded room. Simon would show us how to get to his home.

We turned the corner to Simon’s street. The street is a dirt road off the main road. The red, rich soil of Kenya covers every inch of this long road. Up we went, as the road ascended and we dodged not potholes, but regular bikes with massive loads of grass or wood, their drives pushing them resolutely upwards. Or women and children carrying huge loads of potatoes in sacks, supported by bands around their heads. Or cows, stumbling down the road into town.

We spun in the soil, which was muddy at times, and began to wonder how on earth Simon could manage this. We finally arrived at his farm, perched high on a hilltop with a spectacular view of Kenya. To get to his farm you must climb up another dirt pathway strewn with rocks.

The logistics of getting him help for a bleed are mindboggling. When Simon gets a bleed, this is what happens:

Simon, in pain, has to either walk down the dirt path to the dirt road, then walk over three miles on this dirt road, down the hill and into town. Then he has to wait for the local bus to drive him to Nairobi, to the only hospitals that know how to care for people with hemophilia. Our drive took over two hours, and that was going fast. On a bus, you can expect to take two to three times longer as it makes stops, and goes slower.

All the time, Simon is in great pain.

We arrived probably with our mouths gaping: the farm is rustic but pretty and what a view! His mother greeted us, but wasn’t smiling, the way Kenyans usually are when they smile. Indeed, the entire family was grim, and tight-lipped. “They are stressed,” Maureen said to me aside.

We sat inside the small home (we would call this a shed) where his mother lives. I glanced around and noticed the corrugated tin roof (nothing new there; this is a given in the developing world) and cardboard. The walls were split logs, and the “wallpaper,” or covering, was cardboard, through which the light peeped in.

We chatted with Simon a long while, recording his family history and discussing his bleeding pattern. This would give us the necessary information to register him with Save One Life and find him a sponsor. Jeff also gave him an interview, and Simon spoke in Kiswahili, the national language, as his English is very limited. He shared his frustration, not at hemophilia, but of the incredibly long distances he must cover just to get some kind of help.

It was clear to us all that Simon needed to keep factor at home. To my delight I learned that he had been taught to self-infuse. But the government of Kenya buys no factor, and so there rarely is any available. Imagine traveling all that way in terrible pain only to arrive at the hospital and be told there is no factor! Or, come back tomorrow for your FFP.

Simon’s mother surprised us with a wonderful home cooked meal: mokimo, a national dish. It was the only meal we would eat all day (and only my second meal in two days!!). Things started to lighten up a bit. We presented Simon with a gift of factor VIII; we shared how Save One Life would provide funds for transportation. And we pledged somehow we’d keep him stocked with factor. By the time we shuffled back to the car, everyone was beaming, like a little ray of light brightening his future.

Before we left, we stopped at the local pharmacy where I bought Simon syringes, needles and medical tape. Things we so take for granted are not free here! And some cash so Simon could ride one of those taxi-motorbikes back up the hill to his home.

The ride back was both sobering and exciting. We had defined ways to help this very special man.

Our day was far from done. The ride back—three hours again—was only to plan what to do about another young man, age 21, hemophilia A, in a mental institution. He was placed there following the post-election violence that engulfed Nairobi last fall. This young man’s home was invaded, ransacked and then burned to the ground by electrified hoodlums, as many homes burned all around. I don’t know his whole story: perhaps he was chased, terrorized. Whatever it was, it left him so traumatized and depressed, he had to be committed. We heard he was able to leave now, following two months of treatment.

The problem? His mother, single, with two boys with hemophilia and two nieces, has to pay $340, a fortune, perhaps more than what she makes in a year. The son would not be released unless this was paid. This is the way it is in developing countries. We actually drove at twilight to go see him. We were allowed into the padlocked Men’s Ward, and the rank smell of human beings unable to care for themselves assaulted us. Lying on cot after cot were young men, about 25, all heavily sedated for the evening. The boy’s mother was with us as we tried to wake he son. He awoke and stared at us blankly, through drugged eyes. He looked so small and helpless on the old, thin cot. My God, I thought. This could have been my 22-year-old.

I made the only decision I possibly could; I gave the money to Paul, and tomorrow (Thursday) he would go with the mother and bring this poor child home, where his family could care for him.

This was a day of pure experience and exploration in the lives of two young men in desperate need. We cannot fix everything or everyone, but our motto at Save One Life is “To save one life is to save the world,” and that works just fine for me.


Maureen, founder of the JMHS
Laurie buying ancillaries for Simon

Jambo from Kenya

It’s with great pleasure and joy that I’ve returned to Kenya, in east Africa, to visit the patient groups and the patients I have grown so fond of over the past nine years. I first arrived in 2001, returned again last year and was eager to not wait eight years before returning again!

Kenya is best known nowadays in America for its elite athlete runners (one just won the Boston marathon last week) and as the ancestral home of our president. But it is very important for hemophilia care as its national hospital has become a training center for many in east Africa. There are an estimated 4,000 people with hemophilia in Kenya, and about 400 identified and registered. Yes, there is a long way to go in providing care, but seeing where it has come in nine years, it has been making steady progress.

I landed late last night after a six hours flight to London, an overnight stay and then an eight+ hour flight straight to Kenya. I was greeted by Maureen Miruka and partner Sitawa, parents of Ethan, who has hemophilia. Maureen founded the Jose Memorial Hemophilia Society to help organize patients with bleeding disorders and to provide programs that address their needs. Jose was Maureen’s first son, who died three years ago that same evening.

My first stop today was the Kenyatta University Hospital, to visit with the chief hematologist, Dr. Walter Mwanda, and the Kenya Haemophilia Association. We had a wonderful meeting and it was exciting to get caught up on the many outreach activities planned, and the ideas of their young president, James Kago, who has hemophilia. What devotion: James just became a father for the first time on Saturday, and here he was, attending to affairs of the state! Our meeting, originally a courtesy call, lasted three hours. We all share a deep passion for helping those suffering with hemophilia in Kenya, and it showed in our bubbling over of ideas and concerns and a pledge to help the KHA and all patients. (Photo: Dr. Wanda and KHA)

Next stop: a visit with James’s new baby girl Tiffany! It’s been a long, long time since I have held a newborn and there is perhaps no greater joy.

Next stop was to meet at my hotel with Maureen and James, and also Geoffrey Mosongo, a young man with hemophilia who has established a new program to help young men with hemophilia get scholarships, finish school and find work. Geoffrey rightly recognizes the needs patients have as they mature to find employment. The meeting was to put heads together to find better ways to create results. I was very impressed with the level of respect and compassion each has for the other, and for each other’s organizations.

The meetings went on well into tonight, for we are ten hours ahead of Boston time.

Tomorrow I go off for a field visit about two hours outside of Nairobi, the capital, to meet with patients in their homes. Stay tuned!

The Kenyan Flag: The black stripe represents the African people; the red stands for the blood shed for independence. The green represents Kenya’s natural resources. The thin white stripes symbolize peace and unity. The central emblem is a shield of the indigenous Masai warriors.

Good Book I Just Read
Pooling Blood by Cheryl D’Ambrosio

This is the true story about two sisters with bleeding disorders (factor V deficiency), as told by their stepmother. It is absolutely compelling; a beautiful tribute to the story of Cheryl’s fight to keep the girls alive, and educate a medical community often ignorant of girls with bleeding disorders. From the opening scene of a blood smeared bathroom, to the blossoming of the girls socially at camp to a near-death experience while on a vacation, the book is a roller coaster of emotions and learning experiences. I started reading it while on the treadmill; three miles never flew by so fast! The book is a testament to advocacy and persistence, and Cheryl is a gifted storyteller.

The only places where the book falls short is when medical or industry related material is shared. The description on page 114 of Bayer’s Kogenate FS production stoppage is completely wrong; the explanation of volunteer versus paid blood donors is outdated and incomplete. The glossary however is very good. Readers should enjoy the story, learn from Cheryl’s experience and prepare to be very inspired.

World Hemophilia Day, Big and Small

World Hemophilia Day was celebrated Saturday around the world in many different ways. The best story I’ve heard so far is how the Romanian Hemophilia Society turned a Bucharest city fountain blood red to raise public awareness of the disorder. I heard from my Romanian friend and partner Adriana that the government then pledged to increase funding to hemophilia 70%. That’s a big way to celebrate!

Likewise, many of the pharmaceutical companies make large donations of product or money to the World Federation of Hemophilia, to commemorate this day.

WHD falls on April 17, the birthday of the founder of the WFH, Frank Schnabel. As the WFH is headquartered in Montreal, many assume Frank was Canadian. He was actually a Californian, and moved to Canada to seek better health care coverage. We should keep that in mind on his birthday, especially here in the US where the health care debate rages on.

There are an estimated 300,000 people with hemophilia who get little or no treatment; most reside in developing countries. Some countries, actually a lot, get no factor at all. But we have small victories, and that too is what WHD is all about. 18-year-old Alfonso, from the Dominican Republic, is someone special to me. I’ve known him for over 10 years, since we started our first camp in the DR in 1999. He was shy, sweet and always smiling, no matter the pain. I used to tower over him, and now he towers over me! Last year, I enjoyed watching him mentor the younger boys as a counselor… and he hobbled about on a leg badly mangled by untreated bleeds.

I was so touched by how helpful he was at camp, and how much joy he brings to all, that I told him I’d get him anything: an iPod, new computer? I know he comes from a family with little means.

“I just want to walk normally,” he confided in Spanish.

His dream is coming true. He had surgery this year, with factor IX donated by a company. The hospital absorbed most of the fees (we helped just a little). He emailed me with extreme thanks for making this wish come true, and with many blessings and exclamation marks!

To me, this is what World Hemophilia Day is all about. Helping the world’s people with hemophilia, in big ways and small, concretely and measurably. I hope his life has been changed by this. I can’t wait to see Alfonso at our 11th Annual Camp, June 5, perhaps walking normally!

Thanks to All for Luke’s New Life!

You may recall that last fall we received notice about an orphan with hemophilia in China. A quick email to our readers, and within one week–which is completely amazing–we had a family to adopt him. Within 48 hours my readers had raised $17,000 on line to help pay his fees and travel for his new family to get him. And within just a few months, Lu Feng was enrolled in a new American school! I’ve been told that Chinese adoptions can take up to two years. This adoption was almost miraculous; thanks to Homeland Adoption agency for facilitating this, and to all of you who helped. Here’s an update on “Luke”:

“We wanted to say thank you for your generous donation for our adoption of Lu Feng. Our family can never thank you enough for your kind support. It means so much to us that the hemophilia community showed so much compassion and concern for a small boy living with hemophilia, in a Chinese orphanage. The success of the fundraiser was overwhelming to us. We raised enough funds to pay the rest of our adoption fees. We also had enough to cover a good portion of the costs of travel and living expenses in China.

“Here is a brief update of our recent trip. We left for China on January 20 and we met and received custody of Lu Feng on January 25. Two days after we received Lu Feng, he had a knee bleed. We were unable to get factor concentrate, so we treated his pain and iced. We borrowed a wheelchair for the rest of our time in China. Lu Feng had never been in a wheelchair before and loved the new sense of freedom he had. Previously, he was confined to bed when he had a bleed. We stayed in China for another two weeks, for paperwork and legal processing of all the documentation. Two days prior to leaving China, Lu Feng had had enough of the terrible job we did pronouncing his name. We thought and thought and finally asked him what he thought of the name Luke. He loved it, and we have called him Luke ever since.

“We arrived home on February 7 and were so happy to be reunited with our 3 children we had left behind. Luke is settling in nicely to family life. He started school the week after he arrived home and is in the third grade. He loves school and looks forward to it every day. He’s learning the English language very quickly and has learned many words and phrases adding to his English mastery each day. We are making an effort to continue exposing him to Mandarin speakers, whenever we have the chance, to keep his native language abilities intact.

“We have already had several doctors appointments and Luke has started physical therapy to increase overall strength and range of motion of his right knee. He is in the process of getting up to date on all his immunizations. He’s already gained 5 pounds, which is great, since he is quite underweight.

“We are so happy that Luke is here in the United States of America. Here, he is a son, a little brother, a grandson, a nephew, and a cousin. Here, he will get the best medical care available for his bleeding disorder. Here, he will never feel hungry. Here, he will be able to continue to be a part of the Chinese culture. He has already introduced his new family, to so many new foods and he teaches us new Mandarin words each day. We are excited to blend the Chinese and American cultures together in our home. Thanks to you all!”

The Luckey Family

Great Book I Just Read
The Great Influenza by John M. Barry
This book provides an exhaustive history of the 1918 outbreak of the Spanish flu, which is described as the most deadly known pandemic in history. I had always heard of this flu, but had no idea the story behind it, why it was so deadly. It was a perfect storm: an outbreak of a particularly virulent flu happening at war time. With troops packed into tents and barracks, and traveling cross continents en masse, the flu virus laid waste to countries around the world, to the troops, closed down major cities, left behind tens of thousands of orphans and overwhelmed the nation’s healthcare system. This book is also a detailed study of the history of US medicine: as little as one hundred years ago you didn’t even need a college degree to go to medical school! William Welch is the founder of the US medical system, which modeled itself after Europe’s. The book provides in-depth history into the research institutes, the key players, and their research to race for a vaccine for the 1918 pandemic. Over 500 pages, you will gain huge respect for our physicians, researchers, nurses, and even the virus itself. This is an amazing piece of research and asks probing questions. Four stars.

Bringing Factor and Hope to Jamaica

Jamaica conjures up images of sun-drenched beaches, rum drinks, and dreadlocks, and sounds like reggae and steel-drum bands. It’s a beautiful Caribbean island made famous by Port Royal, dubbed the wickedest city in the world and frequented by the Caribbean pirates in the 17th century—yes, there really were pirates of the Caribbean and Jamaica was their favorite hangout.

Port Royal is now a desolate tourist site, and like many developing countries around the world, Jamaica has its share of economic woes. Still, I had a wonderful four-day visit to Kingston, the capital, this past week, to assess hemophilia care.

Why Jamaica? We have had requests for factor donations from Jamaica on and off through the past nine years. Just a handful of patients. But last year the number of requests jumped, causing us to take notice. Then last summer, two young men, one age 17 and one age 22, died. The younger of the two, Kemar, had called me from his hospital bed to thank me for the factor donation. He died three days later.

That was the sad catalyst that made me decide to come to Jamaica. I was very pleased when long-time friend and colleague Derek Robertson, a Jamaican who lives in Virginia and has worked with NHF, Gulf States Hemophilia Center and Hemophilia Alliance, decided to join me.

See all photos from the trip here!

I carried with me about $90,000 worth of factor concentrate, which ended up on its own trip in Miami somewhere. I pretty much arrived last Monday evening with the clothes on my back and nothing more

Still, I was grateful to have arrived and to be met at the airport by Derek’s brother David, a pilot, who made sure I safely arrived at my hotel.

There wasn’t much to do but wait for the bags and Derek. Derek arrived the day after me, on Tuesday, and we picked up a car rental. Adopting many British customs, everyone drives on the left here. We visited his mother, aunt and family members. They provided a wonderful Jamaican lunch for us, including rice and peas, and ackree, the national dish. It was delicious!

Derek and I went for our first official visit, to the Blood Bank to see Dr. Jennifer Thame, a hematologist who Derek knew years ago when he worked with Gulf States. You see, Gulf States and Jamaica were twinned as part of the World Federation of Hemophilia program many years ago. Dr. Thame explained the health care system and how most patients would be treated at the Kingston Public Hospital (which we did not tour on this trip), where care is free. Those patients with insurance could go to University Hospital of the West Indies (UWI).

There are about 290 patients with hemophilia in Jamaica, and almost all of them are registered, so that’s a plus. The big minus is that there is no factor. Almost no one gets factor. We only heard of one couple who purchases it. Outside of Kingston, there are referral hospitals, and some patients go to them.

Dr. Thame was very interested in helping the patients more and pledged to stay in touch. First, she helped us enormously by making a call to the health ministry to get our factor released from customs.

Everyone was bemoaning the terrible drought Jamaica has been suffering but there was none that afternoon as the clouds burst and we were soaked in a downpour. Bad hair day for me! Caught with no umbrella, we made our way to the Ministry of Health to get a certificate that would release the factor. With that in hand, we proceeded back to the airport and waited and waited. With some paperwork and a brief interrogation, the factor was released!

Back to the car and then off to Radio Jamaica (RJR), where Derek and I were interviewed about our work. Earl, the announcer, asked excellent questions about hemophilia, how healthcare in Jamaica tackles it and what it takes to improve the situation. Derek and I both stressed how the price of clotting factor is prohibitively expensive for countries like Jamaica and part of improving care is finding a way to lower that price. It was fascinating to see how radio broadcasts are done, and Earl, Derek and I engaged in a lively discussion about American politics and health care. Lest we forget, the rest of the world watches US policies and politics very closely!

That night we had a magical experience. It starts with one special lady, Kerry-Ann, a young Jamaican mother who contacted me some time ago to get factor for her little boy. Kerry-Ann and I both were in touch with Ceymar, the young man who died, and both of us felt it was time to do something. So before I even pledged to come to Jamaica, I found the patient leader I think we had been looking for.

Kerry contacted all the patients on my list, and we invited them to the Pegasus Hotel for dinner and a discussion. We had a lovely buffet of favorite national food, including “jerk” chicken, and drinks. I didn’t know what to expect. Sometimes in developing countries people want change; yet when it comes time for a commitment or action, they back away, or don’t even show up. Many citizens have learned over time that not much changes, or it takes too long, and they learn dependency and apathy. Not this crew.

Every single person on the list showed up! And not only that but they were vocal, active, and determined. We met Lincoln, the first patient we ever shipped factor to in Jamaica. I was reminded that about six years ago, my husband Kevin and I took just a three-day holiday to Negril, in the north, and Kevin told me, “This is just for us. No brining factor or meeting with anyone about hemophilia!” But I recall that I snuck about six doses in my backpack and slipped off the gift shop while he napped one afternoon, and mailed Lincoln his factor! How good it was to finally meet him!

I met Shirley, a single mom with four children, two with hemophilia. Her older son Harris was in bad shape, and in much need of orthopedic surgery for his leg. He cannot walk without crutches and his quality of life is poor. And yet, there he was. They drove a long way to attend.

(Photos: Laurie and Lincoln; Aaron and Jordan; the patients share)

We also met Tyrone and Damian, brothers with inhibitors, both in their 20s, and their very powerful sister, who would stop at nothing to get better care for her brothers. We also met Beverly Parkinson and her husband, long time beneficiaries of Project SHARE. I felt like I was meeting a long lost relative as Beverly and I have been in contact for some many years to help her sons Kurt and Khaleel. They drove two and a half hours to attend!

The dinner was to be from 7 till 9, but carried on till 11 pm. It was as if someone had pierced a wound and let it drain. Out came frustration, anger, despair and pleas for help. Wayne, a strapping six foot-one man with hemophilia declared that this was the first time any of the patients had ever been together in one room. Ever! Shirley said she didn’t even know there were other patients with hemophilia.

We took down names and email addresses, and they all planned to meet in the coming two weeks again, to begin to plan a support group. I told them that in the 14 years I had been doing this, this was the biggest surprise. I had never seen a group so poised to make changes! With a wry smile, one of the moms told me that Jamaica was one stop on the African slave trade route where they dropped off the trouble-making slaves before they arrived at Hispaniola. So, the country was founded by active and lively trouble-makers! I laughed and said that could be said of where I was from, Boston, too!

Good luck followed us on this trip as we secured a meeting this morning with the Prime Minister. This is thanks to the persistent efforts of Juliet Hanlon, a Goodwill Ambassador with World of Hope International, UN ECOSOC, who has been so helpful to both our programs, Project SHARE and Save One Life. Prime Minister Bruce Golding gave us over 20 minutes of time, remarkable considering he is a head of state and extremely busy. He asked why we had visited Jamaica and listened intently as we described hemophilia its complications and how we plan to help Jamaica. I showed him my photos of children from other developing countries, and this always has a powerful effect on people. The photos show images you just don’t see in the US—grotesquely swollen joints, amputations, gangrene, disfigurement and pain. I brought a vial of factor with me and Derek explained how much is needed as a child grows and the cost.

How could the government help? Perhaps for now, just awareness and maybe assisting when there is a critical case: a child in need of surgery, a shipment of factor detained in customs. I asked one big favor: a date for April 17, 2011 for World Hemophilia Day. A meeting with the patients. He happily agreed!

Next stop was UWI to see Dr. Wharfe, the effective head of the Jamaica Hemophilia Committee. Kerry-Ann accompanied us. Dr. Wharfe is an extremely kind and caring hematologist, who faces touch challenges. She expressed as well her frustrations at the lack of factor but also at the lack of patient involvement. We all sensed that was about to change this coming year. So we chatted about how to move forward, to make hemophilia in Jamaica better.

Later that afternoon, Derek, his mother Rita and I took a trip to Port Royal, and walked among the abandoned forts in the scorching sun, where cannons would fire upon enemy ships, and where pirates and buccaneers ran amok. We ate a delicious sea food dinner at Gloria’s, basking in the heat, before returning to our respective domiciles.

All in all, we had a positive trip that inspired hope to a group of isolated patients. Out next steps will be to hammer out a strategy moving forward, to bring the determined patients and the dedicated physicians together as a team, and to not lose the energetic momentum gained in three days.

Some background: Jamaica was discovered by Christopher Columbus in 1494, and was settled by the Spanish early in the 16th century. The native Arawak Indians were gradually exterminated, and Europeans imported African slaves. England seized control in 1655 and established plantations for sugar, cocoa, and coffee. Slavery was abolished in 1834, which freed a quarter million slaves. Jamaica gained full independence in 1962. The north part of the island is a popular and safe tourist destination. Kingston faces a high crime rate and is a major relay station for drug trafficking from South America.

Excellent Book I Just Read
Bananas: How the United Fruit Company Shaped the World by Peter Chapman
What do bananas have to do with nuclear weapons? Formed in March 1899, United Fruit with Minor Keith at the helm expanded into Honduras, Costa Rica, Panama, Colombia, Cuba, Jamaica and the Dominican Republic. Chapman makes a compelling case for how the founding of one of the first true multinational companies, United Fruit, which began with the simple importation of a few loads of bananas, became a global powerhouse, installing rulers in what became known as “banana republics,” and deposing rulers and anyone who stood in the way of profit. Banana exportation required railways and shipping, and Keith’s control grew, interlinking countries and later events. Jungles were trampled to make way for plantations and workers treated much like slaves. Chapman focuses on much of the evil wrought by United Fruit, and how much power was simply handed to them by corrupt or simply stupid leaders in Central America; and the US had a tarnished hand in helping it overthrow leaders and equip and train militia. It’s a fascinating review of history more than a study of business, but read it for both. In the end, United Fruit was its own worst enemy, and its greed, combined with disease and the genetics of bananas brought it down. Great book to read just before heading to Jamaica, as many Jamaicans were forced out of the banana business by UF. Four stars.

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