JMHS-K

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.
Read:
http://online.wsj.com/news/articles/SB10001424052702303456104579485452584630182?mg=reno64-wsj&url=http%3A%2F%2Fonline.wsj.com%2Farticle%2FSB10001424052702303456104579485452584630182.html

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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