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Monday, April 28, 2014

Land of One Thousand Hills… and Challenges Part I

Traditional Rwandan dancers

A dream come true for me—  Rwanda. This trip happened to coincide with the twentieth anniversary of the start of the genocide, April 1994. I recall vividly watching my TV each day, holding my newborn, Mary, and helplessly comparing her blessed life with the sufferings of the refugees in Goma, and those trapped in their villages and in the capital, Kigali. The genocide went on for three months while the world mostly watched, indifferent, unbelieving, and immobile. It was then and there that I resolved to do something to help those with hemophilia in other countries. Later, Save One Life was born.
"Land of one thousand hills"

Things have changed in Rwanda, which is one of the prettiest and cleanest of all the developing countries I have seen. The country has been reborn, and money is poured into healthcare. But one of the rare disorders that gets no funding or attention is hemophilia. That’s about to change.

First some facts: Rwanda is one of the smallest African countries, located in eastern central Africa, about the size of my home state, Massachusetts. Nearly half of its 11 million people live in Kigali, the capital. Colonized by first the Germans, then the Belgians after World War I, it is an independent state now where English and Kinyarwanda are spoken. About 95% of the population is declared Christian.

The current GDP (“income”) of Rwanda is about $15.7 billion, which ranks it at #141 in the world. Average income is about $ 600 a year. And about 45% of the population lives below the poverty line.

Farming impacts 80% of the population. Most crops are for internal consumption, with only tea and coffee being exported. Thanks to the wild mountain gorilla population, tourism is the number one industry, with farming a close second.

Dinner at Dr. Fabien's House
Life expectancy at birth is 64 years, ranking Rwanda about196th in the world.

My first impressions were all positive of this enchanting African land. I looked at the stunningly beautiful pastoral vista: rolling hills, tiered like a cake with green frosting, all farms and crops. Patched-worked in were squares of other crops: banana trees, sugar cane, pineapple, sorghum. And everywhere people walk, balancing great loads on their heads. Even the children: their faces disappear under great loads of bamboo, until they resemble huge bails of greenery with legs. Or small children struggle to haul water jugs back to their homes. Infants are wrapped and tied onto their mother's backs, asleep. Women work hard here. Men push bicycles up hill, with a towering 50-lb sack of potatoes or yams. The children wave at me and say “Allo!” A huge field in the foothills is dotted with colorfully clothed Rwandans chopping and turning the earth with hoes; backbreaking work. 

For this blog I’ll write about our meetings with the hemophilia team. In Part 2 I will cover the visits to the Genocide Museum, churches and then the Mountain Gorillas. Because to know Rwanda, you must know more about the Genocide, and its natural wonders which attract people from around the world.

The lone machine at the lab
On Sunday night, April 20, Maureen Miruka and I were invited to dinner with Dr. Fabien Ntaganda and his family at his home. Dr. Fabien is a young hematologist and the only hematologist in a country of 11 million. He had just recently returned from training in South Africa. His daughters Alegra and Farley were charming and we enjoyed conversing with them.

Dr. Fabien with Laurie Kelley
Maureen is president and founder of the Jose Memorial Haemophilia Society-Kenya. She has a son, Ethan, with hemophilia, and was compelled to found this patient-centric organization after her other son Jose died. After knowing her and working with her for several years, I asked her to accompany me on this trip to create a bridge between the two countries. To me, it’s silly to have African nations reaching out to the West constantly, and for us to help unilaterally, when Africans can share and should share with one another. Maureen would have much wisdom and experience to share with the patient group the next day.
Maureen Miruka with Dr. Fabien and pediatricians

On Monday April 21, we met at the Rwandan Military Hospital, where Dr. Fabien works, to meet with many doctors of different disciplines. I gave a talk about the need for leadership in starting a hemophilia foundation and also in changing history—here, to create a hemophilia program that addresses problems medically and socially.

Maureen gave a presentation of her own story that led her to create the JMHS-K, and how it is impacting lives there now.

Afterwards we toured the pediatrics ward, meeting two pediatricians who told us about their encounters with hemophilia patients. Treatment? Fresh frozen plasma. Not even cryo. The first use of factor concentrate was December 2012, when a donation from the World Federation of Hemophilia was received! December 2012!

This fact jars remarkably in a country where The Clinton Foundation is deeply involved, where health expenditures are 10.8% of GDP, placing Rwanda at 17th in the world, where HIV prevalence is 3%, one of the lowest rates in Africa.
The government views healthcare as a human right. With over 400 health care facilities, 42 district hospitals, and 45,000 community health workers providing care are the village level, Rwanda has created a system to bring health care to both its urban and rural populations. Yet, life expectancy is only 64 years (and lower for men).

Hemophilia most certainly contributes to this low life expectancy.

And with a population of 11 million, there should be about 400-500 with hemophilia. Yet only 27 have been identified. Dr. Fabien showed us the blood lab, where a one humble machine stood. Rwanda needs a proper diagnostic facility, in order to test those with factor VII and factor IX, those with inhibitors or von Willebrand disease.

Maureen presents how to organize a hemophilia society
The pediatric wards were bright and cheery, with beautiful beds (so remarkable not to see chipped paint, stained walls, overcrowded facilities) and clean floors and walkways.

Our driver, Lucian, took Maureen and I back to the hotel after this, where we had lunch together, and then waited for the parents/patients to show up at 2 pm for our first meeting of the Rwanda Federation of Hemophilia. This group was formed in February 2013, but in actuality, nothing has been implemented or become official. The group is not registered as a proper nonprofit with the government, which then prevents it from participating with the WFH and receiving the resources it needs and deserves. Our mission is to get the group together, sort out why it has not been registered, get it registered, and get it moving, according to the tenets of my book, Success as a Hemophilia Leader.

Fred and Prince
Emmanuel, new president
Attendees included: Emmanuel, Alyos, and Sylvestre, all fathers of children with hemophilia; young people Fred and Prince, brothers, and their mother. Prince, age 15, was on crutches and needs to have x-rays to determine if surgery is possible to fix his patella, which was knocked loose during an accident. Dr. Fabien, in spite of all the work he has to do, had done his part and got this community together, bless him. We met for over an hour, talking about what needs to get done to get this new initiative moving. We ordered soft drinks and African tea for everyone. Maureen’s lecture on what she has accomplished with JMHS was superb and opened their eyes to possibilities—what they as a group of patients and parents can accomplish. As an African, she can communicate with them as I cannot; she has that credibility that I don’t.

Right then we discussed their constitution (It needs reviewing as it’s been a year); temporary elections were needed today, now, to get leaders in place (done!); priorities need to be established (blood diagnostic lab and registering the society). We accomplished all that. Fred, only age 21, took the Minutes. We were having our first proper meeting.

It was a good meeting, and maybe even a bit intimating, as we contemplated all that needs to be done.

On Tuesday, Maureen headed back for Kenya, and I had a day off to read and organize notes from my hotel room. Later that day, Dr. Fabien and I met with the Health Minister, the Honorable Dr. Agnes Binagwaho, who was appointed in May 2011. The Health Ministry is located in a commercial building, and we waited about an hour until she was done with her other guests. A pediatrician, the Minister of Health understood about hemophilia. I showed her photos on my laptops of some severe cases. And then we cut to the chase.

Incredibly, Rwanda offers health care for all individuals to access medical services, currently 95% of the population have access to insurance (current annual insurance cost is approximately $5). Medicine is sold at pharmacies, and patients get reimbursed about 80% through the government. Could this be done with factor?

Laurie Kelley with the Hon. Dr. Agnes Binagwaho 
No, she said. It would overwhelm the system and is too expensive. And honestly, I thought, asking parents and patients to pay just 20% of the costs would wipe them out. So there is no easy solution for treatment of hemophilia in Rwanda. Yet, Barbados, a small Caribbean country, purchases factor; Honduras, one of the poorest countries in the Western Hemisphere, purchases factor. How can we move other countries in the same direction?

It takes a structure fortified by the patients, families and physicians (the Rwanda Federation of Hemophilia; it takes help from the outside world (the WFH and entities like us and the JMHS-K); and it takes time. And over time, Rwanda will achieve self-sufficiency.

Our meeting was pleasant and gave me a better picture of the challenges we were up against. But as I watched in later days, the women walking miles carrying heavy burdens on their heads to market, the children who were dwarfed by the huge bundle of sticks they carted about on their backs, I know that this is a country ready to work for its daily bread, its dose of factor. It has overcome much already, and will over come the new challenges too.

Bamboo market
To quote the country’s president, Paul Kagame, who led the revolt against the government during the civil war/ genocide, from an article he wrote in the Wall Street Journal recently, “As we pay tribute to the victims, both the living and those who have passed on, we also salute the unbreakable Rwandan spirit, to which we owe the survival and renewal of our country…” Think of the victims as those with hemophilia, and you can parallel that we will succeed one day in providing hemophilia care to a nation that has already suffered enough.


Great Book I Just Read
Shake Hands with the Devil by Roméo Dallaire

Dallaire was the head of a UN peacekeeping mission during the 1994 civil war/genocide, in which 800,000 Rwandans were slaughtered in three months. The book is not a reporter’s eye-witness account of atrocities: it is a moment by moment, blow by blow, insider leader’s view of the events leading up to the April 6, 1994 assassination of Rwanda’s president, the internal struggle to get the Arusha Peace Accord finalized, the mobilizing of anti-governmental forces, the power struggles between the Tutsi and Hutu tribes, the political players, and more. Dallaire gives an exhaustively detailed account of what went on politically before during and after the Genocide, both inside the country and globally; how the UN on the ground reacted and the indifference of the world. It is a scathing indictment of the bureaucratically hampered United Nations, the hesitant United States and the self-serving Belgians. While the world watched, hundreds of thousands of Tutsis and moderate Hutus were macheted and mutilated. How Dallaire coped with the lack of resources, the suffering of his own troops, constant gamesmanship of the players involved, death threats, lies from politicians, and being surrounded by death and suffering of women and children is nothing but heroic. He is a hero, and did his best. It is an exhausting book to read in many ways, yet must-reading for anyone involved in charity work, war time missions, history, the military, and huge international bodies like the UN. So many lessons to be learned; Dallaire has done the world, history and future citizens a vital service in providing this book. It should be a military/humanitarian classic. God bless him. Five/five stars.

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