Rwanda

La-Va Land

A brief respite from all things hemophilia as I share my adventure to the Nyiragonga Crater in the Democratic Republic of the Congo.
 

After the hemophilia workshop in Rwanda, I decided to have a brief adventure. On Saturday, June 17, I packed
up my hiking gear, and waited in the lobby of the Mille Collines (of “Hotel Rwanda” fame). My driver Faustin arrived,
and we loaded up the jeep and took off. He was nice: clean cut, friendly, like
most Africans seem to be. We drove through Kigali, where there was a bit of Saturday
morning traffic on the narrow, two-lane road.

The drive was a good four hours to the Rwanda border. I looked out the window at the pink stucco houses perched on the
rolling hills of Kigali to my right; to my left, more tropical pink and
turquoise blue painted homes on top of red dirt. Despite the dirt, everything
is clean. No paper, plastic bags, trash. While poor, the Rwandans have pride.
And strict laws that prohibit not only littering, but even bringing plastic
bags into Rwanda. I’ve never seen such a clean developing country before like Rwanda.
The rolling hillsides gave way to lush forests, and tilled fields on graduated steps, all
pattered in different crops. Faustin pointed out, There’s sorghum, there’s
maize, and there’s tea. All these created a patch-work green quilt of crops
spreading out before us. At the top of the quilted fields, the lone trees that
have not been chopped down crown the tops of each hill. Land of a Thousand
Hills.
The roads
are excellent and winding, going up and up, higher and higher, and I thought,
Barry Haarde just has to do Wheels for the World in Rwanda! And sure enough, we
pass impressive, ripped Rwandans cycling up these killer mountains, wearing
professional gear. Jaw-dropping power!
They, like
us, pass by hundreds of people walking. Everyone in Rwanda walks. Children
struggle with big yellow containers holding water. Old women balance primary
color buckets on their heads, filled with potatoes to sell. Women, men and
children sway under 20-foot tree trunks, sometimes as many as five on one
person, to bring home to chop into firewood. Most people don’t have cars, or
running water. So water and fuel for the fire must be sought or bought and
carried home. Mile after mile, men push bicycles up these hilly roads, which
are laden with several enormous sacks of potatoes. We drive by one bicycle
which only had tires visible; the entire bike and rider, pushing it, was engulfed
in a mountain of kindling. No one hitches for a ride. Everyone is working. By
noon we see impeccably dressed people in large groups walking along: Seventh
Day Adventists returning from church. How handsome they all look, in contrast
to the dusty roads. Faustin pulls the car over and we get quizzical stares, but
he introduces me to his father, in one of the groups. Expressions change to
greetings of joy.
At last we reach Gisenyi, a town crouched on the shores of Lake
Kivu, and “Paradis Malahide,” my mid-range hotel. It’s fine with me, quite
nice. It has a Caribbean feel to it. We check in, and two smiling Masaai
promptly approach and ask if I want to buy sandals.
My room is up on the second floor, all wood, with a beautiful view of Lake Kivu. I
instantly want to just curl up with my book on Rwanda and relax. First lunch:
so we order and sit by the lake. We
eat lunch, which is an almost inedible sandwich for me. I don’t eat it all, as
the chicken slivers in it are dark meat, greatly overcooked. But Faustin
unabashedly takes whatever I have left and eats it, telling me that due to the
shortages of food in the country in the past, nothing goes to waste. He eats
everything in front of him.
Laurie Kelley and Faustin

I ascend the
steps to my room, sort out my things, grab my iPad and read an excellent book
about President Paul Kagame, once leader of the rebellion to overthrow the
regime responsible for the genocide, and later president of Rwanda. A
fascinating man and leader. I order African tea, which is so delicious and
spicy, and watch as a sakabaka (black
kite) swoops down to the beach then back up again to a tree top. Then there are
two, doing a ritual dance, up and down, crisscrossing in the cloudless sky.

I read until dinner, and then order pasta,
which maybe is the food least likely to be ruined by cooking (and I would know as I ruin everything I cook). It’s fine, but
too much, and I eat only half the dish and half a glass of wine. I return to my
room, roll down the mosquito netting and read till I fall asleep, serenaded by
the whirring of the crickets and occasional bird calls.
In the morning, Sunday, I pack up and am
ready by 7 am, as planned, with no breakfast. Just a take-out order of bread
and bananas. We head for
the Rwandan border. Rwanda customs is in a huge building, very out of place in this
remote area. It’s cavernous, empty and air conditioned. Gleaming floors and an
efficient process for passing to the Democratic Republic of the Congo (DRC). We
wait in line, get a stamp, and done!

We then walk across the border, showing our
passport and stamps to the agents seated in the searing sun. As soon as we walk
across the border, the quality of life plummets. It’s an incredible contrast to
the pretty streets of Rwanda. Both are poor countries; both have dusty roads
and homes of rock with corrugated metal roofs. The main difference is that
Rwanda is kept clean: no trash anywhere. In the DRC, people toss wrappers and
trash at their feet. In Rwanda in the
morning, you will see women with their home made brooms of corn husks or branches,
sweeping out the streets, of any stray paper or even dried leaves… even far
away from Kigali on the main road to the DRC, these city workers are sweeping
up fallen leaves from the trees that landed on the road side! Not in the DRC.
It is an impoverished country, psychically and mentally.

 

 
Our new driver picks me up, and Faustin waves
good bye as he returns to Rwanda on foot. I climb into the new jeep and away we
go to Mt. Nyiragonga, a large active volcano. My guide, Tresor, can’t wait to
tell me about the DRC. We are now in Goma, a town made famous during the 1994
genocide, into which a huge number of Hutu refugees flowed after the Tutsi massacre
stopped. They crushed this town, and created one of the worst humanitarian
crises of our times. It was only then, when cholera swept through the camp,
killing thousands and orphaning thousands, that the West finally sat up and
noted that Rwanda had a few problems. That’s a story for another time but the
history of Rwanda and its genocide is absolutely fascinating; I’m reading my
fourth book about it.
We stop at a statue in the middle of Goma, of
a man pushing a chukudu, a two-wheel
wooden “motorcycle,” and Tresor explains that this statue, erected in 2009, is
the symbol of the DRC, and how hard its people work. That’s true: everyone is
working. There are no beggars in such a place, as tourism is limited. I find
you mostly have beggars when there is an influx of tourists.
Goma is grey. Everything, from streets to
buildings and even the color of the people, is chalky, dusty grey. Partly it is
from living in lava-land. The last eruption of Nyiragonga was in January 17, 2002,
when the lava lake collapsed, and lava sped at 60 mph (the fastest ever
recorded!) and reached Goma, coating everything in molten rock, which hardened
to a shell. About 147 people died, and 120,000 were left homeless. An ongoing
threat, besides the rumblings of this active volcano, is carbon dioxide
emissions from the ground, called mazuku,
which kills, as recently as 2016.
Now, everywhere you look you see piles of
lava rock, home built of lava rock, and the color charcoal grey.
Laurie Kelley and Tresor
Soon, the
grey gives way to red dust, as we drive along the main road to the national
park. Within 20 minutes we arrive. A group of men shuffle their feet in place
along the roadside, perhaps waiting to be chosen as porters for the mzungu (white person) who will ascend the volcano
today. The driveway to the registration cabin is so steep we have to get out
and walk, so the jeep can make it up. Welcome to La-Va Land!
It takes
about 30 minutes to sign in, and wait for the rest of our group. We have only
a few people in our group, and indeed, only a few can go at a time. First, it’s
dangerous and a strenuous hike. Second, at the rim of the volcano, where we
will camp overnight, there are only a few sheds (A-frames made of metal). Our
group? George, an FBI agent working in Nigeria, and a dead ringer for Tom
Brady. Orlando, a very athletic flight attendant with Edelweiss Air in Switzerland.
And Franziska and Bacadi, a 30-year-old German woman and her Zanzibarian
boyfriend. This was a great group to hike with and with a few porters (mine is
Josef, who will carry my duffel bag), Tresor and two armed rangers, we head
out!


This was
overall a very strenuous hike, more
than I imagined. Despite being in pretty good shape, I found it hard. In less
than a year, I’ve summited Kilimanjaro (a 6-day hike, 19,341 ft), and then Everest
base camp (9 day, 17,500 ft) but this 11,380 footer was a killer! Partly it’s
the 45° angle that strains the quads and calves; partly it’s the loose lava
rocks. At times you ware walking on wet ground; at others, on loose lava scree;
then you will walk on rocks that twist ever which way and are as sharp as
razors. And there’s the altitude. We were all huffing and puffing our way up,
quads screaming at times. And we need to ascend quickly. Up straight to the
top; sleep overnight, then descend first thing in the morning.
Franziska
and I fell in to talking: she and Bacadi work at a hotel in Zanzibar (one of my
favorite places to visit!). She speaks several languages, but he! He speaks
Swahili, English, German, Italian, French and is learning Spanish! And he was
such a nice guy. I admired how kind he was to his girlfriend. Franziska
struggled right from the start. She was nervous as her fitness level was
self-admittedly not high. I tried to reassure by saying it’s not a competition;
we are in no rush. We’ll all wait. And also what I have in fitness is negated
by age! After all, I’m almost twice as old as her.
Still, it
was a slow hike, with Franziska asking childlike at each rest stop, How much
longer till the next stop?
The higher
we went up, the quieter the group became, as we focused on not twisting our
ankles, and breathing deeply. The air was moist, the vegetation thick and rich.
Tresor stopped us on one rocky section to look at something amidst the rock
piles. I saw nothing. It’s a bird! He said. I didn’t see it. Finally, its form
emerged out of the rocks, like a 3-D photo in which you have to blur your eyes
to see the picture. It was a nightjar, sitting quietly, blinking in the sunlight. I
thought it injured, but when Foramen, our guard, touched it with his gun tip,
the bird arched its wings to ward us off, and there underneath it, warm and
safe, was a single white egg. After a quick snap of the camera, we trudged on.
Eventually
the moist forest gave way to an alpine climate, with low scrub brush and trees
similar to those I’ve seen on Kilimanjaro. The air grew very cool and
we donned jackets. The hillside became even more rocky, in fact, all rocks now.
Sometimes you could find where the spilled lava river solidified, and you felt
like you were walking on a smooth river of stone. Then it changed to sharp,
black, porous lava. Our feet, stepping and kicking them, caused a tinkling
sound, like crystal. Despite its menacing look, the lava sounded like the
finest Waterford.
Finally we
reached our goal, the summit of Nyiragonga, 11,384 feet! Clouds moved in,
sometimes obscuring our view. All of us were anxious to see the famed lava
lake. We ditched out backpacks, threw on extra layers and climbed up a few more
feet to perch on the rim. And I mean perch. It’s a sheer drop down into the
volcano, at the bottom of which is a red, thick, ever-shifting lake of lava, complete
with red waves, red flames shooting upward, bubbling molten rock. It’s like a
prehistoric vision of what hell might be like. If I were an uneducated person,
living centuries ago, this would awe and frighten (it still does) and I would
believe that this is Hell, literally. It looks like the doorway to the Underworld,
where people would burn in its fire for eternity.
But, it’s
just a volcano. And a magnificent one.
We stood for
the longest time, mesmerized, silent except for some oohs and ahhs. Clouds came
and went, but finally they parted to give us a good view of the lake. To hold
my cameras still, I crouched down on the lava, which was mighty uncomfortable;
lava is razor-sharp and hurts. After about 30 minutes of trying to think of
poetry or words that could do this vision justice, I groped my way to my metal
tent. Inside was just a bare mattress, onto which I threw my wonderfully warm
sleeping bag and my gear. I brought a headlamp, essential, and all the usual accessories.
I added layers and layers as it was cold, about 40°. Not freezing, but still I
could see my breath. Dinner was called and we fumbled our way on the pitched
slope in the dark to the mess tent, which had a charcoal fire on the ground. The air was nearly unbreathable inside. Tresor asked me if we used charcoal back home.
Laurie Kelley at volcano rim
It was cold
and dirty, unlike my other adventure trips. The food wasn’t particularly good, especially
inedible was the chicken. Franziska and Bacadi joined us; they signed up for
this on a whim and were fairly unprepared! No gloves and no food. We had them
eat ours, gladly, as I ate almost nothing. Then back to bed where I read a bit
before falling into a deep sleep.
I was awake
at 4 am, happy and content to be on this dirty volcano, and didn’t even need a
second look at the lava lake (which was obscured by clouds I later learned). I
wanted to get back to Kigali for my 7:30 pm flight, a long ways away. So I was
ready—even had mascara and eye liner on!—and after a quick bite we started
down.
My quads
ached and my knees buckled from the 7-hour hike yesterday, and minimal food and
nutrients. I actually had to be careful using my left knee so I didn’t wrench
it. Going downhill on loose lava at a 45° angle is tricky. I slipped a few
times, fearful of landing in the mud (the overnight moisture softened all the earth and
made the rocks slippery) so Foramen held his hand out to me often to help me.
It was a long, quiet three-hour hike back to base. But as we descended towards
the end, I heard a whoop and a rush, and Franziska flew past me and grabbed Foramen!
Get me off this mountain! she happily squealed! I teased her that she was
fooling us about her fitness level. She actually felt good while I was trashed!
Back at base
we exchanged email addresses, waved good-bye, and got into our jeeps to head
for home. I tried to hurry Tresor, but he assured me that we had plenty of
time. And he was right. About 30 minutes later, I walked across
the border into Rwanda again with Tresor, who left me in the hands of Chris, my
drive back to Kigali.
I was tired,
and after a 30-minute drive I climbed into the back seat to try to sleep before
the long trip home. After an hour I gave up and climbed back into the front
seat. Chris and I chatted. I told him I had used Gorilla Trek Africa three
years ago to find gorillas in Rwanda and I loved my guides, who were so good, I
decided to use the outfitter again. He asked who they were: Scodius (who is
friends with me on FB) and a young guy whose name I don’t recall… Chris was
silent then said quietly, That was me.
And he laughed and laughed and I felt all barriers falling. Now I recall!
He and Scodius were so nice then, and I even invited them to
dine with me in the dining room, instead of having them go back to the lesser quality guides’
hotel. We sang Christian songs all the way back to Kigali, I recall, and Chris
gave me a CD with all the songs on it. So this was really nice to see him again and connect.
He shared
how he was born in the jungle, and called himself “Son of Gorillas.” His mother
couldn’t get to the hospital or even midwife; she had been out collecting
firewood, and so she gave birth right in the jungle! To cut the umbilical cord,
one of the women she was with said to bite it. No one would bite it! You do it,
you do it, they all shouted at each other. Then finally they sharpened the edge
of a fan palm, which is tough and sharp anyway, and they cut it. Twelve kids
later, they all kid Chris about being the “son of a gorilla.” Chris became
sober when I asked about his mother now: killed in the genocide, along with a
sister. There’s just no escaping the genocide impact on this country.
We stopped
at a convenience store and bought muffins, which I promptly dropped in the dirt
on the roadside, but ate anyway, after dusting it off. I am getting way too chancy in my habits overseas!
Back to
Kigali, to the Mille Collines, which kindly lent me a room for one hour to
shower and repack, and then Chris brought me to the small international airport. We had to
stop at the airport entrance, unload all the luggage and a Belgium malnoir sniffed
through everything. (Rwanda has tight security.)
And that was
that. I tipped Chris, gave him a hug, settled at a coffee shop in the brilliant sunshine,
and waited for my flight. Eventually it would be a 7:40 pm flight to Nairobi
with a 2-hour layover, a 7.5 hour flight to Amsterdam, with a three hour
layover, and a 7.5 hour flight to Boston.
A 29-hour transit but coming from Africa, decades in distance. And I cannot wait to return. Africa is magical, with stunning natural beauty and friendly people, and a lifetime of work in hemophilia to do.
See the full gallery of photos for the DR Congo here.

“My bones are older than me”

Prince, age 17
“My bones
are older than me,” lamented Prince, the handsome 17-year-old Rwandan with
hemophilia, who I had met previously three years ago when I first came to this
small, lush country. This night, Wednesday, June 14, I welcomed a few families
with hemophilia, who are the founders of the new Rwanda Federation of
Hemophilia. While all competent professionals, they still need some help in
getting their organization jumpstarted. Imagine living in a country that has no
factor, no hemophilia care, and is poor. Of the estimated 800 people with hemophilia here,
no more than 50 are identified.
But this is all about to change.
We gathered socially in the cool evening on the terrace at the famous Hôtel des Mille
Collines, dubbed “Hotel
Rwanda,” a safe haven during the brutal 1994 genocide, where the manager Paul Rusesabagina saved 1,268 Hutu and Tutsi refugees from the Interahamwe militia. (If you haven’t
seen the movie Hotel Rwanda, I urge you to rent it.) The Mille Collines is
a lovely hotel, and while I write this I hear a spry African ensemble playing traditional
music downstairs with chanting and upbeats that make you want to dance!
Shady Sedhom, NNHF, listens to the patients
Prince is rail
thin, and soft spoken, like all Rwandans. I’m glad he arrived first so I could
get caught up with him personally. When I saw him in 2014, I had arrived for
the first time in Rwanda to assist the new Federation. Prince was a stocky
14-year-old then. Now he was lean and taller, with chiseled features. When I
asked him how he was doing, he replied with a phrase that showed his desperate
plight, and poetic aptitude: “My bones are older than me. I have the bones of a
60-year-old, my doctor told me.” His right knee had given him a lot of trouble
three years ago; now the left one was. When was the last time he went to the clinic,
which was only 1 kilometer from his house? Not in years. Why? “Every time I go
they have no factor.”
I’ve been
trying to keep Rwanda supplied with factor; indeed, we are the only ones who
give them factor. And that’s because they are not yet registered with the World
Federation of Hemophilia. Once they register, they will be eligible for much,
much more factor, perhaps regularly. Getting them registered, both with their
own government and then the WFH was my goal this trip.
With me was
Mr. Shady Sedhom, a registered pharmacist and now program manager with the NovoNordisk Haemophilia Foundation, an incredible organization based in
Switzerland, that provides program expertise, management and funding for
hemophilia organizations globally. This was the second time I would work with
them, but the first time in person. We would give a half day workshop on
Thursday, June 15.
Benis’s knee
But this
evening we were here to meet the board members, and hear their stories. I don’t
want to just give a lecture on how to run an organization: I want to know them,
as people, as families, as families with hemophilia, as blood brothers and
sisters in this amazing global family we have.
Little Benis
I met Vivine,
whose son Ness, now age 8, hemophilia B, had a headache as a toddler, and it
continued on. We listened in somber silence, as she continued. She took him to
the doctor, who tested him for malaria, but this was not it. They gave him a painkiller
and sent him home. The headache continued for two more days, getting worse. She
took him to the ER on a Friday night at the public hospital, but they said they
could not give him a CT scan because it was too late. Come back Monday! In a
culture used to respecting authority and not questioning the medics, Vivine’s
strong maternal instinct won out. She went to the King Faisal Hospital (a
private hospital), which would be prohibitively expensive. She went anyway that
night, and they diagnosed him with a head bleed! He got factor and this saved
his life. Her story highlighted the need for education among the country’s
doctors.
A fun evening with many shared stories
We met
James, age 31, also hemophilia B, who was just diagnosed last year! James is a quiet man, lacking a few front teeth. Indeed, he had persistent dental
problems, with constant bleeding. When the doctors here could not figure out
what was causing this, he finally sent his blood to France to be tested, at
cost of $400! This is a ridiculous amount of money in a country where the average
annual household income is about $700. Especially since it could have been
diagnosed in neighboring Kenya.
Sylvestre
has been my email pal for the past few months as we prepared for this visit. He
serves as Secretary of the RFH. Sylvestre is well known to us in the office
back home as he has requested factor for his son Virgil. Little Virgil,
squirming before me with all the energy of a four-year-old, wears glasses for
his still misaligned eyes. He was blind for 18 months after a coma, due to head
bleed as a two year old, but factor from Project SHARE saved his eyesight. Slowly,
Sylvestre told us, he is getting his eyesight back.
Sylvestre
reminded me of how I got involved with Rwanda in the first place—I had actually
forgotten as we have accumulated so many stories working with so many countries.
A nurse named Tracy Kelly was volunteering in Rwanda about five years ago, and
met Sylvestre as he sought help for little Virgil. She contacted her hospital
back home, which eventually found us. We shipped factor over right away. And
when the crisis passed, I asked Sylvestre to consider founding a national
organization for those with hemophilia. Like many we have met, he agreed. And
here we were.
We finished our
juice drinks and tea and cakes, and then they dispersed into the soft night,
hopeful for the next day’s outcomes.
Vivine adds a needs list
The next day
was our workshop. Shady has a prepared slide deck, exercises and came equipped
with markers, post-its, posters. The attendees arrived early, prepared to work!
Besides the RFH we also had several doctors, which was a high point. Doctors in
developing countries have little free time. Most work at two hospitals and/or
have a private practice. They seem on call 24/7. To have them here was an
absolute honor. The day consisted first of a needs assessment, brainstorming
what Rwanda needs to have good hemophilia care. Each attendee wrote out ideas
on a post-it note then attached it to a poster, under one of four areas of
need. The post-its read: A comprehensive center, training, education of health
care workers and families, diagnosing suspected cases, outreach to find more
patients, public awareness to help find patients, and of course… more factor.
Laurie Kelley with patient at CHUK 
But the
greatest need was to register the RFH with the government. Until it becomes an
official, registered nonprofit, nothing much would happen. The WFH needs it
registered and accountable. Project SHARE will keep sending factor of course,
but we can only do so much. Shady said NHF is ready with funding for a project
to help meet these needs… after they get registered.

 
And an
interesting phenomenon: learning how to challenge each other’s ideas. When
someone offered an idea, such as the most important need was to get more
factor, Shady and I challenged that. Spending your time securing factor is
urgent, especially when your child has a bleed. But allowing the registration
issue to languish means you will only get dribs and drabs of donated factor. Focusing
on registering now will open so many doors later. Short term pain for long term
gain. The RFH was learning now to priorities needs.

After this
we did goal setting, based on those needs. And then prioritizing those goals.
This took over an hour. Later, Shady asked the group to plan a birthday party,
as an exercise in planning a hemophilia event later on (like World Hemophilia
Day next April). It was a fun exercise to see who remembered what action item
was needed. And ironic: that very day, June 15, was Shady’s birthday! Unknown
to him I ordered a cake. And right after the birthday party exercise, we took a
break, and out came a cake with candles! It was fun to all join in and sing him
happy birthday. We thanked him for his dedication for spending his birthday working on Rwanda’s hemophilia future. Then we learned that we had another cause to celebrate: James’s wife had just given birth a few hours ago! But he stayed to complete the workshop with us. Such dedication!
After break
came Stakeholder Awareness, an exercise I’ve never done before so this was
educational for me. Even just learning who to identify who is influential and
how much they were influential—Prince offered the media, which was
brilliant—and others offered families, the public, the ministry of health and
more.
By the end
of the day we had the components of a strategic plan, with action items. It
will take many more meetings to hammer out the details but it was a powerful
five hours. Afterward, we dined outside in the night air and had a buffet
dinner together. Shady had to dash off to catch a flight but the rest of us
relaxed and shared our thoughts on this truly historic day.

We planted
the seeds of growth, and now, it’s up to the Rwandans to take next steps on the
road to better hemophilia treatment care.




And they
deserve it and can do it. Rwanda spends more on healthcare per capita than most
African countries. The country is peaceful, functions well and has infrastructure.
It’s a small country, about the size of Massachusetts, my home state. Best of
all, it has interested and dedicated doctors. All ingredients of success.
There will
be challenges. I read a Rwandan proverb that says: If you are building a
house and a nail breaks, do you stop building, or do you change the nail?
We don’t want them to ever stop building.

A reason to celebrate!
My vision?
To see Rwanda join the WFH, and be present next year at the WFH Congress in
Scotland, where they will meet the world community, and their fellow Africans,
to learn, to share and to get the resources that so many others get. When they
join everyone else, they will then be able to determine their treatment and
destiny, and a whole generation of Rwandans will grow up free of the pain and
disabilities they suffer now.

To see photos of the trip, go here. 

“My bones are older than me”

Prince, age 17
“My bones are older than me,” lamented Prince, the handsome 17-year-old Rwandan with hemophilia, who I had met previously three years ago when I first came to this small, lush country. This night, Wednesday, June 14, I welcomed a few families with hemophilia, who are the founders of the new Rwanda Federation of Hemophilia. While all competent professionals, they still need some help in getting their organization jumpstarted. Imagine living in a country that has no factor, no hemophilia care, and is poor. Of the estimated 800 people with hemophilia here, no more than 50 are identified.
 
But this is all about to change.
 
We gathered socially in the cool evening on the terrace at the famous Hôtel des Mille Collines, dubbed “Hotel Rwanda,” a safe haven during the brutal 1994 genocide, where the manager Paul Rusesabagina saved 1,268 Hutu and Tutsi refugees from the Interahamwe militia. (If you haven’t seen the movie Hotel Rwanda, I urge you to rent it.) The Mille Collines is a lovely hotel, and while I write this I hear a spry African ensemble playing traditional music downstairs with chanting and upbeats that make you want to dance!
Shady Sedhom, NNHF, listens to the patients
Prince is rail thin, and soft spoken, like all Rwandans. I’m glad he arrived first so I could get caught up with him personally. When I saw him in 2014, I had arrived for the first time in Rwanda to assist the new Federation. Prince was a stocky 14-year-old then. Now he was lean and taller, with chiseled features. When I asked him how he was doing, he replied with a phrase that showed his desperate plight, and poetic aptitude: “My bones are older than me. I have the bones of a 60-year-old, my doctor told me.” His right knee had given him a lot of trouble three years ago; now the left one was. When was the last time he went to the clinic, which was only 1 kilometer from his house? Not in years. Why? “Every time I go they have no factor.”
I’ve been trying to keep Rwanda supplied with factor; indeed, we are the only ones who give them factor. And that’s because they are not yet registered with the World Federation of Hemophilia. Once they register, they will be eligible for much, much more factor, perhaps regularly. Getting them registered, both with their own government and then the WFH was my goal this trip.
With me was Mr. Shady Sedhom, a registered pharmacist and now program manager with the NovoNordisk Haemophilia Foundation, an incredible organization based in Switzerland, that provides program expertise, management and funding for hemophilia organizations globally. This was the second time I would work with them, but the first time in person. We would give a half day workshop on Thursday, June 15.
Benis’s knee
But this evening we were here to meet the board members, and hear their stories. I don’t want to just give a lecture on how to run an organization: I want to know them, as people, as families, as families with hemophilia, as blood brothers and sisters in this amazing global family we have.
Little Benis
I met Vivine, whose son Ness, now age 8, hemophilia B, had a headache as a toddler, and it continued on. We listened in somber silence, as she continued. She took him to the doctor, who tested him for malaria, but this was not it. They gave him a painkiller and sent him home. The headache continued for two more days, getting worse. She took him to the ER on a Friday night at the public hospital, but they said they could not give him a CT scan because it was too late. Come back Monday! In a culture used to respecting authority and not questioning the medics, Vivine’s strong maternal instinct won out. She went to the King Faisal Hospital (a private hospital), which would be prohibitively expensive. She went anyway that night, and they diagnosed him with a head bleed! He got factor and this saved his life. Her story highlighted the need for education among the country’s doctors.
A fun evening with many shared stories
We met James, age 31, also hemophilia B, who was just diagnosed last year! James is a quiet man, lacking a few front teeth. Indeed, he had persistent dental problems, with constant bleeding. When the doctors here could not figure out what was causing this, he finally sent his blood to France to be tested, at cost of $400! This is a ridiculous amount of money in a country where the average annual household income is about $700. Especially since it could have been diagnosed in neighboring Kenya.
Sylvestre has been my email pal for the past few months as we prepared for this visit. He serves as Secretary of the RFH. Sylvestre is well known to us in the office back home as he has requested factor for his son Virgil. Little Virgil, squirming before me with all the energy of a four-year-old, wears glasses for his still misaligned eyes. He was blind for 18 months after a coma, due to head bleed as a two year old, but factor from Project SHARE saved his eyesight. Slowly, Sylvestre told us, he is getting his eyesight back.
Sylvestre reminded me of how I got involved with Rwanda in the first place—I had actually forgotten as we have accumulated so many stories working with so many countries. A nurse named Tracy Kelly was volunteering in Rwanda about five years ago, and met Sylvestre as he sought help for little Virgil. She contacted her hospital back home, which eventually found us. We shipped factor over right away. And when the crisis passed, I asked Sylvestre to consider founding a national organization for those with hemophilia. Like many we have met, he agreed. And here we were.
We finished our juice drinks and tea and cakes, and then they dispersed into the soft night, hopeful for the next day’s outcomes.
Vivine adds a needs list
The next day was our workshop. Shady has a prepared slide deck, exercises and came equipped with markers, post-its, posters. The attendees arrived early, prepared to work! Besides the RFH we also had several doctors, which was a high point. Doctors in developing countries have little free time. Most work at two hospitals and/or have a private practice. They seem on call 24/7. To have them here was an absolute honor. The day consisted first of a needs assessment, brainstorming what Rwanda needs to have good hemophilia care. Each attendee wrote out ideas on a post-it note then attached it to a poster, under one of four areas of need. The post-its read: A comprehensive center, training, education of health care workers and families, diagnosing suspected cases, outreach to find more patients, public awareness to help find patients, and of course… more factor.
Laurie Kelley with patient at CHUK
But the greatest need was to register the RFH with the government. Until it becomes an official, registered nonprofit, nothing much would happen. The WFH needs it registered and accountable. Project SHARE will keep sending factor of course, but we can only do so much. Shady said NHF is ready with funding for a project to help meet these needs… after they get registered.

 
And an interesting phenomenon: learning how to challenge each other’s ideas. When someone offered an idea, such as the most important need was to get more factor, Shady and I challenged that. Spending your time securing factor is urgent, especially when your child has a bleed. But allowing the registration issue to languish means you will only get dribs and drabs of donated factor. Focusing on registering now will open so many doors later. Short term pain for long term gain. The RFH was learning now to priorities needs.
After this we did goal setting, based on those needs. And then prioritizing those goals. This took over an hour.
Later, Shady asked the group to plan a birthday party, as an exercise in planning a hemophilia event later on (like World Hemophilia Day next April). It was a fun exercise to see who remembered what action item was needed. And ironic: that very day, June 15, was Shady’s birthday! Unknown to him I ordered a cake. And right after the birthday party exercise, we took a break, and out came a cake with candles! It was fun to all join in and sing him happy birthday. We thanked him for his dedication for spending his birthday working on Rwanda’s hemophilia future. Then we learned that we had another cause to celebrate: James’s wife had just given birth a few hours ago! But he stayed to complete the workshop with us. Such dedication!
After break came Stakeholder Awareness, an exercise I’ve never done before so this was educational for me. Even just learning who to identify who is influential and how much they were influential—Prince offered the media, which was brilliant—and others offered families, the public, the ministry of health and more.
By the end of the day we had the components of a strategic plan, with action items. It will take many more meetings to hammer out the details but it was a powerful five hours. Afterward, we dined outside in the night air and had a buffet dinner together. Shady had to dash off to catch a flight but the rest of us relaxed and shared our thoughts on this truly historic day.

We planted the seeds of growth, and now, it’s up to the Rwandans to take next steps on the road to better hemophilia treatment care.

And they deserve it and can do it. Rwanda spends more on healthcare per capita than most African countries. The country is peaceful, functions well and has infrastructure. It’s a small country, about the size of Massachusetts, my home state. Best of all, it has interested and dedicated doctors. All ingredients of success.
There will be challenges. I read a Rwandan proverb that says: If you are building a house and a nail breaks, do you stop building, or do you change the nail? We don’t want them to ever stop building.


A reason to celebrate!
My vision? To see Rwanda join the WFH, and be present next year at the WFH Congress in Scotland, where they will meet the world community, and their fellow Africans, to learn, to share and to get the resources that so many others get. When they join everyone else, they will then be able to determine their treatment and destiny, and a whole generation of Rwandans will grow up free of the pain and disabilities they suffer now.

To see photos of the trip, go here. 


Gorillas in the Mist… and Mud (Rwanda Part 2)

Sunday April 20, 2014 Easter
Maureen
Miruka and I ate a hearty breakfast, which is quite good at the Luxury Hotel
Rwanda in Kigali: scrambled eggs, fresh pineapple, Africa tea (with freshly
ground ginger which gives it a kick). Lucian, our driver, arrived and whisked
us away to see the two famous memorial churches, where thousands were massacred
in the genocide. The Genocide happened 20 years ago, from April 6 through July.
Over 800,000 died in three months, in the most brutal ways possible, Hutu vs.
Tutsi, with the Hutu extremists trying to exterminate the Tutsis, which they
called inyenzi—“cockroaches.”
Laurie Kelley at the Eternal Flame
The
first church is Nytarama, where 5,000 died. It is a small brick structure, a
deep red, color of the earth of Rwanda. How can so small a building hold the
sadness of the eternity?
Everything
was solemn and respectful of the dead. Our guide was a pretty Rwandan lady, who
was 36 but looked much younger; she was 16 when the genocide took place. We
were told not to take photos, but she relented and I tipped her well. The Eternal
Flame was slightly pitiful; just a tiki torch that someone fills now and then
with oil. Inside the church it was breathtakingly horrid. The first sense is
how small and dark the church is; then the smothering feeling as you see skulls
and femurs and pelvises to your right neatly stacked on shelves as you enter,
and then the actual clothing of the victims, dried and stiff with their 20-year-old
blood, piled on the rafters, hanging over your head. It feels suffocating.
There is an odd smell, a thickness to the air.
Fresh
flowers wrapped in cellophane are placed by relatives on coffins that line the
center aisle. At least some of the victims are remembered. What horrors took
place in this church; what suffering. And their crime? They were Tutsis.
Children were forced to watch their mothers be raped. Children killed children;
pregnant women were disemboweled. On another shelf, some of the victims’
belongings, including one identification document stating that the victim was
Hutu.
I
look at the skulls, some of them children. Who were you? A man, a woman? Did
you have a family? Such horrors. Whole families were removed from the face of
the earth and for all time. No one will ever recall them, show videos or photos
of them or build a memorial or scholarship in their name. It’s as though they
never existed.

Grenades
blew holes in the wall into which more grenades were thrown. Machetes hacked
to death the innocents. In an adjoining building, the children’s Bible study room,
a large red stain on the wall was a ghastley memorial to where children were bashed against the
brick and left to die. The kitchen was the most terrible as it looked
exactly as it had that day when fire decimated it. Everything in it was broken,
and covered with the fine red dust of Rwanda. No one disturbed it. People were
slaughtered here.

We
somberly left and drove to the next church, Nyatama, where thousands more were
slaughtered. The physical church is bigger and in better shape but inside…. The
inside was completely filled with stacks of caked, moldy clothing of the
victims, stiffened with blood. A chipped statue of the Virgin Mary looked down
from the brick wall at the scene of carnage, hands outstretched, as though she
were crying and asking why? It was a disturbing, startling contrast. The alter
bore the instruments of death: machete, hammer, knife, as well a the artifacts
of the victims: a watch, a wallet, a comb.  The alter cloth was stained red with blood, and left
untouched for 20 years. Downstairs, a glass enclosed display of skulls, with a
glass floor, through which we could see straight through to the cellar. Under
display was a coffin. In the coffin, unseen now, but originally displaying the
body as it was found, a woman with a baby on her back, who had been gang raped, then had a spear shoved through her up towards her neck, and then was stabbed through the heart, which went through the baby. She was
displayed like that, spear and all, for years until finally she was interred.
As
we exited in shocked silence, a brightly dressed older woman, with strong
features and a scowl, waited outside for us. The sister of the interred woman. Why
was she suddenly here? Maybe because it was Easter, maybe because it was the 20th
anniversary, but something in me somehow said she is here to try to earn a
little cash from sympathetic Americans. We put some Rwandan dollars in the donation box.
Lucian
offered to take us to the presidential palace, Habyarimana’s palace. Habyarimana’s death in 1994 sparked the genocide. This was a
boring tour, mostly because we couldn’t understand the guide well. The palace
was not in great shape. There were photos on display from the genocide, which tore at my heart, especially the children with their hollow stares. The most
interesting part was peering out the yard and seeing the actual wreckage of the
plane crash which killed him. On April 6, 1994, someone (to this day no one
claims responsibility) shot Habyarimana down (and the president of Burundi) as
he flew back from attending the Arusha peace accords. His plane landed right in
his own backyard, where his wife could see it. The wreckage is amazing.
Thursday April 24, 20014   Gorilla Trek.
This
morning I awoke at 5:30 am, and hastily dressed in the chilly air to
prepare for the gorilla trek. I loved putting on my trekking clothes and gear,
and it made me so content and happy inside to know I could go out exploring. The
road to the gorilla sanctuary on the volcano was brutally ragged, all pitted
magma rocks, mud and stones. A few precarious and narrow wood slat bridges. Out
of the simple homes along the route poured out children, most in dirty clothes,
they themselves dirty wearing a hodgepodge of clothes. All smiling and waving
to us, “Allo!” they cheered!
Laurie Kelley with hikers for gorilla trek
The
countryside was spectacular: heavy mist settling on the rich red earth
upended in clumps in the carefully groomed fields, green trees stretching up
toward a dominating volcano in the background. The Land Rovers pitched back and
forth over the rough terrain. Finally we reached the spot and disembarked. We
hiked about 30 minutes only, through the ploughed fields, through thick bamboo
forests where one guide had to machete his way in, up mud hills, and over
little streams. We met up with our trackers, who had found the “Hirwa” family,
consisting of a nine gorillas: a silverback (“Lucky,” so-called as he gets all
the females), three adult females, two sub-adult females (not able to mate
yet), one one-month old, and three year old twins.
And
there they were. Startling to be so close to this endangered animal, which is
so like us. When our guide, Patrick, was telling us about the male gorilla’s
habits— he gets drunk on one of the plants, fights with the other young males
and then cheats with the females— I asked, “We are talking about gorillas, right?”
Munyinya
We
first spied the mother with the one-month-old, just above our heads on a soft
mound of earth. All around us is forest, or perhaps jungle? Thick, green,
perfect cover for these gentle giants. We could get in close, and snapped many
photos. No flash is allowed as this reminds the gorillas of lightning, of
which they are afraid. Then another gorilla appeared, and another.
While
we were busy snapping photos, the alpha male, his domed forehead so reminiscent
of King Kong, appeared—Munyinya, the silverback. Our guides said he was the
biggest silverback in both Uganda and Rwanda, making him the biggest living
mountain gorilla. He issued deep, guttural grunts, and our guides responded. We
snapped and videotaped for 15-20 minutes when suddenly Munyinya jumped down,
and somehow commanded the entire troop to come to him. Each members obeyed and
lowered themselves to stand next to him. He was only a few feet away from
members of our group!
Together,
the entire family climbed up to another spot above us, where they proceeded to
settle in and eat everything in sight. Munyinya even bent an entire bamboo
tree, broke it in half and stripped it of its leaves. His power is immense. The
twins appeared and were fuzzy and playful.
Our
guide signaled to me that he found another, a young female. She was wandering alone
so we tracked her. I got ahead of the guide, and suddenly found myself too
close to the gorilla. She stopped, and I stopped. Then she started towards me! “Don’t
move!” my guide whispered. I couldn’t, as I was up against bamboo trees. The
gorilla came within two feet of me. She looked right into the lens of my
lowered camcorder. Then, caught on film, her eyes drifted upwards and looked straight
into mine, as though she were checking me out. Then, she simply moved on. Walked
ahead, plunked herself down and began eating bamboo shoots. Our group moved in
for some great photos!
After
one hour we had to leave. The gorillas only tolerate visitors so long. A happy
walk back with lots of excitement at having seen these beautiful, intelligent, endangered
animals.
 
Friday April 25, 2014 Dian Fossey’s
Gravesite
The
African rains pour down but I am in my lovely room, with a space heater on,
drying my trekking socks, a cup of spicy African tea, and my laptop. We did a
fantastic hike today.
I
awoke at 5, and lay in bed enjoying the space heater I was given, and my soft
bed. Then up to trek all morning. I washed, donned my trekking clothes,
bandana, sunglasses, gaiters, boots, money, Camelback. Love being outside and
hiking! I had internet at last and downloaded all the news, of which there was
not much. Ate a breakfast of scrambled eggs, roll, mango and passion fruit.
The
sky was clear and blue. Ahead of me, the magnificent volcano that has stood for
millions of years. Last night I spotted Mars, its intense red light
gives it a power that its little size belies.
We
set off along the bumpiest road I have ever been on. These were magma rocks,
spewed out in 1957, when the little volcano last erupted. The rocks were
propped every which way, and our SUV had to maneuver them over a long while.
Going at most 10 miles per hour, Chris navigated us while I enjoyed the
pastoral countryside. Mud houses, clean and tidy; people of all descriptions
walking everywhere. What’s that, a walking tree? No, a slim older Rwandan man
carrying a tree on his back to replant. Mothers with babies tied to their backs
with colorful cloth carried massive branches or potato sacks or water jugs on
their head. Little children, dirty runny noses, barefoot, screeched out “Allo!”
and waved frantically. I reciprocate!
And
the backdrop behind this daily opening of a play are the Virunga range
volcanoes, over million years old. The big one, Sabinio, is named after an “old
man’s teeth” because of its ragged outline. It is stunning. The road we drive
on is horrifically pitted with magma rocks: we pitch back and forth, as if we
are climbing each rock separately. Our stomachs churn. Our slow speed of 3 mph
give the children a chance to run alongside. And everywhere area people
walking.
After
45 minutes of that ride, we pull into a small village where the army has men
posted. Here’s where the trailhead begins. I meet Lois, our guide, a gorgeous
Rwandan woman, and we head out.
We
walk up a long “road” of lava rocks, dusty grey now but still pitted like most
lava rocks are. Ahead are the green slopes of the volcano; on either side, the
village. Mud homes, numerous and playful children, laundry laid out on shrubs,
water pouring out of a pipe that comes from the mountains, and children filling
buckets. The children pour out of their little homes to ogle us. I smile at
each one. The adult are not so friendly. I have four army soldiers with me; two
in front and two behind, to watch for wild buffalo, Lois tells me. And a man in
blue, who I ignore at first but I guess he is part of the park service there to
help me. As if I need help!
It’s
a long hike that morning. The rocky road cutting through the village, then a
grassy path twisting up the mountain, passing cows and sheep that don’t like
me, then up straight alongside a rocky wall, then into the forest proper. It is
cool but walking makes me hot and I shed my coat. The climb is almost vertical
and slippery. Up past a little footbridge and we are in the forest!
It
is primordial, lush, gorgeous. Behind us, downward, spreads the village then
all of Rwanda. Far in the distance are the famous “thousand hills.” Now the
walking is even more treacherous. For the entire time I have to watch my feet.
The path has now been cleared but as it is the rainy season, it’s completely
submerged in mud, covering all the roots and even the white cloth potato sacks
placed there as stepping stones. My boots are able to balance on the roots and
hit the sacks, but every now and then I miss and my feet are engulfed into the
inches thick, black mud. But is feels great! Thick and slimy, it sucks loudly
when I remove my boots or walking stick. Still, I am nimble and surefooted and
keep up with Lois with no problem.
Laurie Kelley hiking to Dian Fossey’ gravesite
For
a while you can’t grab onto anything as the stinging nettles are the only thing
lining the path. A few of these microscopic needles get lodged into my hand,
and they sting and itch relentlessly but there’s nothing to be done. I had
gloves with me in my daypack but neglected to put them on. Every so often I
raise my eyes to gaze at the forest; it is magnificent. Every blade, every
tree, every leaf, a miraculous wonder of an intertwined ecosystem. Lois breaks
off a leaf that she says the gorillas love and I taste it. Nothing at first,
then… bitter!
We
trek for at least two solid hours, straight up hill, slipping on the rocks,
getting stuck in the mud, avoiding the stinging nettles. Our path weaves in and
out, back and forth to find the best support so we don’t sink in the mud. A few
times my feet miss and I go in over my boots in the mud, and feel water rush
into my socks. By now I have thick mud up to my shins, and a light mist starts
to fall on me. It is glorious. I have never been happier!
Finally
we reach the place, where Dian Fossey worked. There’s nothing left; her house
and research station were destroyed. All that’s left of her house are a few
posts; I sit on one and Lois snaps my picture. We see the grave and stand over
it as Lois tells me more about Dian’s vicious death by machete.
The
return trip is fast, probably less than one hour. I love the challenge of
hiking. Descending is tricky; gravity pulls, while you are a bit tired and the
rocks are slimy with mud. My boots are completely covered in mud, so I slip
easily. Still, I keep a great pace. I love nature; love it, love it and always
want to be outside.
Coming
finally into the clearing, though still having to navigate some steep and rocky
passes, I tell Lois, It ain’t over yet, Most accidents happen on the way down.
And sure enough, my ankles are tired; I can feel them give a bit. When we are
almost down, already into the cultivated place and alongside the rock wall, I
look up to catch the glorious view and slip suddenly, falling to earth in a split
second. My right arm hits the rock wall heavily. In a second the man in blue,
who had nothing to do, lurches forward, with “Sorry!” But I hop back up,
checking the most important things: my camera lens (which hit hard) and my
manicured nails. All’s good. My forearm has an 8-inch superficial gash in it
and I have a scraped elbow and my hand has a puncture in it. A bit of blood
here and there but I’m good to go.
 
Finally
we are back; I tip everyone well, and we happily climb into the SUV. My guide says
I am the first person ever to get back before 2 pm; it is only 12:15! We flew!

We
cause a little riot at one street corner, giving away to a small crowd the
soaps, toiletries and toothbrush I confiscated from all the hotels. They are so
grateful for anything they get. I give another little boy who was running
alongside the SUV my chocolate protein bar. When I said “chocolate,” his eyes
widened!
Muddy and bloody!
The
clouds have now rolled in, and the rain was pelting a while ago. My boots and gaiters
have come back to me clean as can be. My wool hiking socks ran red for 20
minutes—I could not soak them enough to get the mud out. Now I sit, enjoying
tea, a warm room, birds chirping outside, peace and quiet in this rich land of
Africa.
“In the
recycled carbon air of the long flight back, I physically long for Rwanda, its
rich red earth, the smell of its wood fires and its vibrant humanity. “ Shake Hands with the Devil, Roméo
Dallaire

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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