Novo Nordisk Haemophilia Foundation

Jiva Pakistan! Part 2 Lahore City

Fridges with factor!
At the airport, Masood Fareed Malik and his wife Sehar
were waiting outside in the cool, dry air. I first met Masood, now 35,  when he was 17! It
was great to be here again. I love Lahore, a wide city, more lush and dry than
Karachi, with a high population of 11 million. I first visited in 1999, when
the Pakistan Hemophilia Patient Welfare Society (PHPWS) was only two years old,
and the Lahore chapter was in its infancy.
Laurie Kelley with Dr. Shahla (L) and Sister Margaret
On Friday, December 1 we went to the chapter office, which is
jam-packed with shelves, resources, refrigerators and people.  One room is an administration room, the other is the factor/infusion
room, which completely impressed me. It has a security camera mounted on the
wall. The seven fridges are broken down by purpose of the donation, including “NMO”
only (national member organization of the WFH, so this means donations from the
WFH and most likely, Eloctate and Alprolix); “prophy” (also from the Bioverativ
donation); “Other” (VWF and bypassing agents). Their on-line registry is better
than anything I’ve ever seen! This chapter is a model of management, efficiency
and transparency. And when I visited in 1999, the first thing I asked was what
their goals were. They had none, and no vision, no registry, nothing! Now—supermodel for the world.
Several patients were there to
get infusions; they are not charged money but are encouraged to donate
something to the chapter. They have over 650 registered patients, and their
leadership is outstanding. These young men—Faizan, Adil, Masood, Rauf,
Farooq—are exceptional! Adil was the young teen I visited back in 2007 at his
home; Patrick Schmidt, CEO of FFF Enterprises bought him a computer at my
request, and now he does data entry for the chapter among other things, is over
6 ft. tall, married with a baby!
Kashi with his first gori
Saturday December 2, 2017was a huge community event at the Children’s
Library in Lahore, sponsored by a grant from the Novo Nordisk Haemophilia
Foundation. As I got into the car, Masood pointed out Kashi, a young boy with a
sly smile, who was helping him. Masood told me that Kashi has never seen a
“gori” before—a white person. So, I acted a bit silly with him, got him smiling
and we took a selfie!
Many patients were already there
waiting. I like to make it a point to greet the audience, to break the ice, so
I walked about, shaking hands, smiling, saying assalam-u-alaikum to all the families. I noted that in general men
sat on the left, women on the right.
The ceremony took most of the day. There
were speeches, awards, and I gave my talk and shared the successes of Save One
Life. I handed out the Save One Life distribution funds for all the
beneficiaries. Much of the day was a photo op. The press was present, and we
had four back-to-back interviews for TV. Many of the young men, even the
reporters, wanted selfies! One nice touch was the stand Masood made in my honor,
with his photo: “Many years back your words inspired me. I am empowered today!
Thanks, Laurie” That was sweet! Masood has become quite the national leader for
hemophilia in Pakistan.
Some takeaways: Masood said, “You [with hemophilia] think you have been cursed but you have been blessed. Because
you are special. God only gives burdens to those he thinks are special, worthy,
strong. This is from the Koran.” One fact of note is that there is a high incidence of
rare factor deficiencies due to family intermarriages. It is quite common for
first cousins to marry.
 
Finally, after this long day, we still
decided to visit families in their homes!
First, we drove to the house of ten-year-old
Momina, who has VWD type 3, and who wants to be a doctor. We discovered on this
trip that has a baby brother Alyan who also has VWD—he’s not registered with
Save One Life so we will get him registered now. They live in a concrete home,
with extended family, very typical in Pakistan. They live on the base floor,
and have a tiny kitchen with a cloth covering the door, 1 bedroom for everyone,
a motorbike in the hallway. They have a small flat screen TV and fan, all in
the sitting room, which was very small. The father earns 1,500 rupees a month ($150)
and spends 1,200 on school. School is a necessity for kids with bleeding
disorders but public schools can be dangerous: there are bullies, and some teachers
cane the children.
Outside, in the enveloping dark, neighborhood
children played in the dirt with toy camels and donkeys and colored chalk,
celebrating the life of the prophet Mohammad. Yesterday was his birthday.
On we drove to visit Saida, who
we saw at the ceremony today. A pretty 19-year-old girl with VWD type 3, petite
and quiet. She is on the Womens Group committee. Her father is a car mechanic, but lost his job (Masood didn’t know
that and was genuinely surprised and concerned). She’s waiting to be accepted
to nursing school. And she tutors about 20 kids after school to make ends meet.
They live in a family home, which is rundown, with plaster chipped off the wall. I gave her father $200 to help them out while he is out of a job.
In the afternoon of Monday December 4, 2017, we attended an Art
Gallery presentation of photos of hemophilia, in an art show called “Reality
Clicks,” a project again sponsored by the Novo Nordisk Haemophilia Foundation. The photographer was none
other than Masood’s brother Bilal. The photos, displayed around the entire
circular room, showed patients in various situations: in pain, with one
another, at work. The press arrived in force again, and interviewed Bilel,
Masood, and Dr. Shahla. The entire project helps to promote hemophilia
awareness nationally.
I’ll never forget what one young
man with hemophilia, Haroun, said: “I felt God never blessed me. I compared
myself to normal people. I had anxiety attacks. But then I joined the PHPWS. I
experienced my own community at last and found that I was actually better off than many of the patients. So
I was wrong to compare myself to normal people.”
We had a lovely time, and
afterwards, went to Masood’s father’s house, where they all live, to have “high
tea.” A snack to them, which to me is as grand a meal as I have ever had!
On Tuesday December 5, 2017 I attended all day the Annual
General Meeting of the national hemophilia organization at the Shalimar Hotel. Saeed
ul Hassangave an excellent presentation
on the patient registry, and mapped out where patients were. He said their
registry was recognized as a success story by the WFH, and I can clearly see why.
Now in 2017 they have 1,850 registered. They use this registry for organization
elections, like an electoral college. 1 vote per 50 patients. With the registry
they found that 40.7% of their patients have joint deformities and 92.6% were not
tested for HIV.

See full gallery of Pakistan here.

Pakistan has four provinces: Khyber Pakhtunkhwa
Province (KPK), Punjab, Sindh and Baluchistan. The tribal belt adjoining KPK is
managed by the Federal Government and is named FATA i.e., Federally
Administered Tribal Areas. What was truly awesome was that at this meeting, I
met patients from FATA, a place that has me intrigued.

Syed Shabistan
is a teacher, tall, with incredibly straight white teeth, impeccable English
and from Peshawar. Peshawar is the capital of KPK, and serves as the
administrative center and economic hub for FATA. Peshawar’s recorded history dates back to 539 BC, making it one of the oldest cities in Pakistan. Its economy has benefited in times past from being at the entrance to the Khyber Pass, the ancient travel route for trade between Central Asia and the Indian Subcontinent. Think of all the tea and spices that traversed this!

Syed was only diagnosed
at age 23. There they speak Pashto. With him was Tahir Oman, the VP, and person
with hemophilia, and Faheem, who also has hemophilia. On June 2013 Peshawar
became operational as a chapter and already they identified 335 patients. How
different this area is from Karachi and Lahore: its has been negatively impacted from the rise
in global violence and is economically depressed. Syed told me there is a
great need for help from programs like Save One Life.

This meeting showcased Pakistan’s excellent progress in hemophilia. The country
still needs to identify the remaining 17,000 or so people with hemophilia, but
is on its way to do so. Pakistan has among the best doctors in the world, and
while lacking some resources, is making headway. Donations of factor will not
last forever, but it gives everyone motivation and has allowed patients to be
on prophy for the first time in history! Thanks to Bioverativ and WFH.
Best, of
all, Save One Life is being implemented perfectly in the country, with all
three program partners. My happiest moment, besides meeting our beneficiaries
in their homes, was knowing that we can focus next year on Peshawar, knowing we
have these three skilled men with hemophilia to help us.
We made
plans for me to visit Peshawar next year, inshallah!

“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. 


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