Pakistan 3: “82 patients, 82 stories.”

Laurie Kelley greeted with flowers
On Wednesday,
December 6, 2017, day 11 of my 14 day trip, we met with Imran Zia. With me were Masood Fareed Malik, president
of the Lahore Chapter of the Pakistan Hemophilia Patient Welfare Society
(PHPWS) and Raul Ahmed, who has hemophilia and is our main liaison for Save One
Life in Lahore. The day was sunny and cool, perfect for visiting. Rauf and
Masood picked me up at the hotel and after only a 20-minute drive we arrived. We wiggled the
car down a narrow street that was decorated with dangling shimmering streamers celebrating
the Prophet’s birthday.
Imran Zia and Laurie Kelley
Imran is president and founder of Hemophilia Care of Pakistan, a charitable
organization that helps people with hemophilia. Why does this exist when there
is the Lahore Chapter just 20 minutes away? Good question. The World Federation
of Hemophilia does not recognize two organizations in one country, which means
HCP is not eligible for any of their resources.
I was
excited because it had been 19 years since I’ve seen Imran! I first met him in 1999, when he was just a 24-year-old with hemophilia. He was very quiet, under the tutelage of Dr. Shahla, who founded the chapter. I still have
an image in my mind of him sitting quietly behind her, as she presented
the chapter and all their work. I asked the boys around her to identify
themselves so I could know them. Who would ever have guessed that a few years
later this quiet 24-year-old with a degree in IT would start his own hemophilia
nonprofit and help so many patients?

See complete Pakistan Trip gallery here.

Mother clutching vial of factor
Imran stood
on the street corner, dressed in modest grey garb, flecks of gray streaking his
hair. He was and is serious, focused and professional. He extended his hand in
greeting. I hope I greeted him warmly, because I was truly happy to see him. I
learned that he and Rauf knew one another as little children at Fatimid, where they
used to go for FFP infusions! We stepped into the narrow hallway, where some families
waited patiently for us on a bench. A six year old in a warm knit cap extended
flowers to me and I knelt down to take them and smile at him.
Imran infusing girl with VWD
Hemophilia
Care of Pakistan exists in a one room office, attached to the Zia family home.
In it is a desk, two benches, a coffee table, fridge for factor, and shelves
which held all sorts of documents and reading material, including very detailed
infusion logs, certified by the hematologist; I was impressed. Imran has
existed really on his own for the past 15 years, assisting families who live in
Lahore, but also those who live very far away. He has made trips to visit them
in their homes up in the mountains, something I truly admire and would like to
do myself.
Ayesha
Was there
any chance he would merge his organization into the Lahore Chapter? Imran, I
learned very quickly, would never join PHPWS. He likes working independently,
has funds from somewhere as he volunteers full time, while having a family to
care for. And he clearly has a model that works.
One by one,
Imran introduced the patients and families to us. “We have 82 patients,” he
told us, “and 82 stories.”
We met Ayesha first, who was wearing a red dress and a very mischevious smile. She is very thin, age 11. She has VWD
type 1 but has joint damage. Her brother Muhamma, was not present, and needs a
circumcision for cultural reasons. Circumcisions are the norm in the Muslim
faith, as in the Jewish faith, and here, not to have one means you are like a
social outcast. It will also worsen your chances of being married, as arranged
marriages are also still the norm. I felt the mother’s concern and knew it
wouldn’t use much factor. Just this small operation could change the boy’s
self-esteem and improve his lot in life. Strange but true! We pledged to help
get the factor for him somehow.
Saleem
Then came
the boys. Shumail Nadim, wearing a maroon jacket– a handsome son-of-a-gun with a
ready smile, hemophilia A. His brother Usama, age 15, wearing beige jacket,
also handsome with a wide and easy smile. Saleem, hemophilia B, age 11, a
confident, charming kid. His brother Amir, age 6, the one who gave me flowers.
And Awair,
so handsome, with a face like a child movie star—we dubbed him “Tom Cruise” for
his fair complexion and jet black hair. Age 11, he speaks a little English. He
had Volkman’s contracture once, and a right calf contracture. Imran showed us
the before and after photos. He has two brothers without hemophilia. His father
is a bicycle tube repairman, who earns about $150 a month, which is very poor.
Imran said
that 70% of Pakistanis live below the poverty line and all his patients were
very poor.
Two things
make his organization a stand out: 1) Imran provides very personalized care. He
visits with patients in their homes, oversees their infusions and rehabs. He visits
them in the hospital even. He feels that he does this better than anyone. 2) He
provides factor to patients for them to keep at home, and has taught them home
infusion. 
This is revolutionary. I’m in favor of home treatment in developing countries, especially for
those who live long distances from the HTC. On Facebook, everyone knows a few
select people from Pakistan who keep pleading for factor. Factor is available
thanks to the Bioverativ/WFH donation, but only in the major cities. If you live three-six hours away,
you are expected to travel all that distance, even with a bleed, to come and
get it. Impossible! Imran has found a solution by sourcing his own factor
(Project SHARE has helped in the past) and shipping to families who live in
remote areas. Kudos to him! This is where being independent has helped patients.
Laurie Kelley with Amir
But his patients
may miss out on other things when not registered with the Lahore Chapter:
meetings, educational symposia, access to more medical experts. Imran has a
medical team that works with him, and they seem to work well together, and they
have expertise in hemophilia.
Abid and his father: worried about their future
Finally we
met the saddest case of all: Abid Anwar, age 28. Thin, quiet, with hemophilia A
severe. Imran only met him a year ago. He’s had seven surgeries. Imran claims
that the doctors didn’t follow up and the wound suppurated, and is still
oozing. The father, present, sold his ancestral agricultural land for $25,000,
an absolute fortune here—all the
money he and his family ever owned and would ever own– so they could pay off
the hospital debts. They are now desperately poor. They have 4 sisters and
another brother. They live hours from Lahore.
Awair
This case
really disturbed me. This is exactly what we don’t want to have happen; patients threatening their entire family
system just to pay for factor that is readily available and medical services!
My heart broke. The look on the father’s face… worry, fear, hollow eyes that look to the future with no certainty. What can be done to
help? If we get him $25,000 he can get his land back, and the entire family
(in-laws, parents, children, even children yet to be born) will survive.
One solution
was to enroll Imran’s members into Save One Life which will help ease some of
their poverty. While we questioned whether we could do this, because the Lahore
Chapter is already enrolled, I was delighted when I returned home to learn that we could
do this! Soon, we will have more Pakistani children as part of the Save One
Life family.
We finished our
visit with a delicious lunch of roti (bread), rice and meat. I met with Imran’s
family, his mother, sister and sister-in-law. All educated, English-speaking,
and wonderful hosts. The Pakistani culture is incredible: every visitor is
treated like family, but honored like royalty. The world could learn a lot in
civility from a visit to a Pakistani home, rich or poor.

Laurie with Imran’s mother
While they
treated me so well, I hope to return the favor by bringing more factor and funds,
no matter which organization we worked with. We said good bye to Imran: six
hours had flown by. I know it won’t be 19 years till we meet again—I don’t have
that much time here on earth. I vowed to return next year, and to see the faces
today as beneficiaries of Save One Life.

Visit gallery of Pakistan photos here.

Imran and the HCP families
Blood brothers: Imran, Masood and Rauf

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!

Hemophilia Rising: Pakistan! Part 1

After ten long years, I am returning to the second developing country I ever visited for hemophilia, and one I feel very close to–Pakistan. Just as I landed in Dubai, after a 12 hours flight, there were reports of protest throughout the country. It was serious: Facebook was even shut down for the first time in its history there. My Pakistani partners wondered if I should continue, as the airport road in Karachi had been closed, but  after a flurry of emails, we all agreed I should continue.
I was pulled out of a long customs line by Asghar Ali, who works at the airport and has a son Rana, with hemophilia. As he put me on the fast track,  I was through in no time. My friends hematologist Dr. Tahir Shamsi and Mr. Alam Zaidi, who has a son with hemophilia, were there to greet me in the
cool early morning air—it was 6 am. I was staying with the Shamsi family, and it was so nice to be back in their home, after 10 long years. 
 
After a rest, we all headed to the beach with the whole family–kids, wives and one grandchild!. It was fun! I’ve been here twice before on previous trips, once including the Shamsi family in 2007. It was hot and sultry. Camels waited for riders, decorated with colorful reins and enormous saddles with frames; horses, which I never saw before, stamped impatiently in the sand.
 
I mounted a white horse, which was compact and wiry. The owners walked them up the beach, then asked in sign language if I wanted to ride it by myself. I wasn’t really sure; was the saddle tight enough? The stirrups the right height?
I finally said ok, and the man just said “Urdu,” motioning to the horse. What—the horse only understood their language Urdu? Then he slapped it on the flank and off we went! It was
glorious! Galloping on this small horse on a beach at the Arabian Sea! 
 
Next—camel ride! I loved how it stands knees first. That was a relaxing ride, though it lurches  and then sometimes trots to catch up to the guide. I was a bit sunburned but what a great way to enter back in Pakistani culture and this nice family.
 
Monday November 27, 2017
Pakistan is the sixth most populous country in the world, but ranks 149th among 188 counties according to the UN, in sustainable healthcare-related goals. Keep that in mind as you read how a dedicated group of patients and their healthcare providers are trying to save their people with bleeding disorders and revolutionize care in this fascinating and ancient country.
 
Today I visited the Husaini Blood Bank, one of the very first stops when I first visited this country in 1999. Then, everything was so exotic and different, so strange. Pakistan was rather insulated from the world, prior to the US Iraq invasion of 2003. In 2007 I saw much US military presence. On this trip, none at all. 
 
Alam Zaidi picked me up at Tahir’s house; as he got out of the car, the back two doors opened and out stepped two beautiful young people: daughter Fatmid, and son Abbas, both of whom I had met when they were children. Abbas, a teacher, is a handsome young man with hemophilia, dressed in a tailored suit, tall. Fatmid is lovely—a journalist.
 
The blood bank was not far, but what a far cry from my first visit! This was a new building, sparkling clean, modern and welcoming. Everything gleamed: chrome, glass and marble. The spry Dr. Jafry is ageless, and is still there as head of the Karachi branch. I met his team and we took a tour through the center. Blood banking is my weakest area, but I can appreciate the new equipment and that they now have hepatitis testing that reduces the waiting period from 70 days to 7 days! This means less chance of spreading the virus.The very first patients I met were two young men with hemophilia, receiving donated Eloctate from Bioverativ. 
Magic! Laurie Kelley with kids
At last we met with the Save One Life children: 24 out of the 25 Save One Life beneficiaries we have registered there! A magician was performing so I sat on the sidelines and watched his slight-of-hand. He pulled a red ball out of thin air, made a wallet catch on fire, did rope tricks. The kids, big and small, loved it! Soon we started the ceremonies, as a small boy recited opening prayers from the Koran. The Karachi chapter did the introductions, and everyone made speeches. It was so kind that they showed photos from my 1999 and 2007 visit.
 
I met Mubashir, the factor 1 deficient boy I met in 2007, as two-year-old, and now 13! He speaks English and is so polite. I had factor FXIII medicine for them after the program.
 
The program was nice, covering the achievements of the Hemophilia Welfare Society Karachi, what Save One Life has done to help. Lots of photos ensued and then the kids were all given pizzas for lunch, while we met with the team and had our own lunch.
 
After this Alam and I drove to the Hemophilia Welfare Society Karachi,

Laurie Kelley, Dr. Jafry, Zahid Hussain and others

 the NMO chapter. It’s small, but holds one fridge that contained some cryo, and the Biovertiv donation (see our article in PEN August 2017). Unfortunately, with the Biovertaiv donation, and the increase in infusions, have come inhibitors. Most are transient, thankfully. There are an estimate 4,000 with bleeding disorders in the Sindh province with only 460 identified and registered at this chapter. 
 
Several of the staff were present. Raheel Khan is a phlebotomist with hemophilia, and works at Husaini. They actually have four paid staff, unusual for most
hemophilia nonprofits in developing countries. Jawwad Shadid enters the data and gave me a demo; he has hemophilia. They have meticulous bookkeeping, and an excellent patient registry.  I was most impressed! I saw this chapter back in 1999, and they have really progressed far, thanks from help from
the WFH and Novo Nordisk Haemophilia Foundation. The donations from Bioverativ
required all chapters here to up their game, get more organized and transparent
and have standards of factor storage and distribution. Finally, we headed back to the Shamsi residence for the evening.
Laurie Kelley with Karachi Women’s Group
 
Tuesday November 28, 2017
Today Alam picked me up at 9:30 am, and we went to the Indus Hospital, and later, the institute that Dr. Tahir Shamsi founded, the National Institute for Blood Diseases (NIBD).
 
The Indus Hospital is breathtaking in size and scope. As we pulled into the grounds, a huge number of people waited in the chilly morning air. It was founded only 10 years ago, as a 150 bed hospital, dedicated to providing free care to anyone, regardless of class or gender. It’s growth has been explosive. It is now serving millions of patients for every type of medical problem. There are now eight hospitals in 5 cities. Care is absolutely free, so much so that this is a cashless hospital. True— no money ever exchanges
hands. Indus Hospital shows what is truly possible when one dreams big enough and has faith. This is also Pakistan’s first
paperless hospital! Imagine! I was so stunned and impressed, I began thinking what I can do at my level to improve my services.

I met with the CEO Dr. Abdul Bari Khan, a gentle giant of a man, who despite his enormous achievements, is very humble and deflects praise. With us were some of his team, Dr. Izza and Dr. Chinoy (who was a classmate of my host, Dr. Shamsi). “You know Dr. Shamsi?” Dr. Chinoy asked me, amazed. “Yes! I’m wearing his wife’s clothes!” and we all had a good laugh. We instantly bonded and I learned more about how people with hemophilia can come here for free care.
Dr. Bari heard my story, and then shared that we both had a common inspiration point: me, with the birth of my son in 1987, and he in 1987 as well, when he first
conceived the idea for such a hospital.
After our meeting I met a lovely elder man with VWD, who is in need of factor. He has had a bone that leaks pus constantly despite multiple operations. I’ll follow up with staff to learn more if Project SHARE can help. Despite all the help and dedicated physicians, Pakistan still faces so many restrictions and limitations medically.
 
After our  tour here, we drove in the crazy, no-lane-awareness of Karachi traffic. It’s like being flushed through a convoluted traffic pipe as we dodge auto-rickshaws, donkey carts, hundreds of motorbikes, cars and trucks, horns blasting, all with some sort of preternatural grace. I never once saw a car get so much as scratched and yet car and motorbike come within mere inches of
hitting constantly. I long since lost my reflex to slam my foot on the floor or grab the dash. You just go with it!
The NIBD  (National Institute of Blood
Disease & Bone Marrow Transplantation ) was founded by my friend Dr. Tahir Shamsi. It’s an 80 bed hospital in the heart of Karachi. It specialized in hematology, bone marrow transplantation and surgical specialties. It’s the only tertiary care and teaching institute in the country exclusively dedicated to provide comprehensive diagnosis and management of patients suffering from blood disorders. In fact, Tahir pioneered BMT in Pakistan and NIBD has performed more than 700 BMT. I can say I truly know some of the best people in medicine in the world!
 
Dr. Tahir Shamsi, founder NIBD

I can also say that I was present back in 2001 I think, when Tahir shared this dream with me: to create such a hospital. I had invited him to a medical symposium my company funded in Nepal, as a guest speaker. After the program, we sat in the lobby of the hotel, having tea, on the floor (why, I forget!) and he grabbed a napkin and sketched out a logo and an idea. I so wish I had that napkin today, because I saw vision in action. A dream became a vision which became a goal which gave birth to a strategy. The vision compelled others to help, and Tahir was on his way. Today I entered this institute, amazed at the number of patients,
the 400 staff, the multiple floors, the progress, the research, the teaching.

I had the honor to meet three of Tahir’s interns, all hematologists, who want to one day go back to their home cities, and start hemophilia care there, particularly in Balochistan, where patients are largely unidentified. We chatted about steps to ensure this happens, and of course, how to make a dream come true! The men were a bit reserved but as we got talking, because more animated and spoke with more conviction. It was exciting to witness! I want to help them see this through, because their passion should be fed like a flame, and not allowed to die for lack of nurturing.
 
When the tour was over, around 5:30, I looked forward to going back and relaxing. But
no such thing! After picking up Tahir’s sweet mother—I adore her—we headed with
the entire family to Kolachi, a breathtaking wooden framed restaurant on the Arabian Sea. It was lit up with strings of white lights, draped like the scarves the women wear here, around the neck of the roof. Sea doves flitted across the top of the water, temporarily hitting the refection of the lights, making them glow for a moment. Roti, spinach and all sorts of things. I’m not a foodie, so I can’t report on anything I ate other than Pakistani food is
excellent!
Please read Pakistan Part 2 in two weeks!
 

A Mighty City

On Friday, Julia (director of Project SHARE), Zoraida (executive assistant) and I went to see the opening of “A Might Heart,” the movie about Wall Street Journal reporter Daniel Pearl, who was kidnapped in Karachi, Pakistan in 2002. The movie stars Angelina Jolie as Marianne Pearl, his pregnant wife and fellow reporter, whose book the movie is based on. Julia and I had just been to Karachi in mid-April, so it was stunning for us to see so much of Karachi in the film. It accurately captures the densely packed former capital of Pakistan, the sounds, the crowds, the color, the craziness. This is what it was like for us to travel there. It might beg the question that so may ask us, “Why do you want to go there?” But I think Randall Bennett (head of the State Department’s bureau of Diplomatic Security) sums it up best when he says, “I love this town!”

Julia and I popped out of our seats and stared at each other when we heard that Pearl had a rendezvous planned with his kidnappers at The Village restaurant; this is where we had lunch on April 15. (In the movie they used a different restaurant with the same name to disguise it) The movie is worth seeing for many reasons: Jolie gives a great performance, as does her supporting cast. It tells a worthwhile, true story. The story itself is not that remarkable; reporter kidnappings happen a lot in this new era, as even this past weekend BBC reporter Alan Johnston was kidnapped in Gaza City, and a photo is now posted of him on the internet wearing an explosive vest. The Pearl story might have been just another footnote in the history of journalism were it not for the gruesome ending, which was posted on the internet and viewed by millions around the world, instantly sensationalizing it. At the end of the movie, I still did not get a real sense of who Daniel Pearl was, and only felt that Marianne was stoic as she underwent this horrific ordeal. To me they seem like ordinary people who got caught in a situation they both knew could happen. There are better movies about survival, stoicism, journalism and character. But this one I was particularly interested in because it took place in Karachi, a city where we work to help an estimated 1,300 with hemophilia, and where I had just visited.

Karachi was in the news over the weekend when torrential rains and strong winds battered the city, resulting in over 230 deaths. Much of the city lost communication and electrical power. I know our hematologist friends there are doing what they can to keep hospitals open to help those with hemophilia.

While Pakistan is not fairly represented by just Karachi, which will appear as the Wild West in “A Might Heart,” Pakistan is a beautiful but struggling nation. President Musharraf, who launched a military takeover in September 1999 (just two weeks after I first visited) is in trouble. Despite improved economic growth, the country has seen Musharraf consolidate his power, through dictatorial means. Firing his chief justice (Julia and I flew to Islamabad with the newly appointed chief justice, who was swarmed by media), silencing media, and shooting demonstrators have led to a call for his resignation. And, he is deeply tied to the US, which gives billions in “aid” to fight the Taliban, which is deeply entrenched in northern parts of the country. It’s a complex country, and America is intricately tangled in its future now. But go see “A Might Heart.” It will plunge you immediately into a country most Americans have never seen, and will never see. As for me, I cannot wait to return to Pakistan, and continue our humanitarian work there.

Great book I read: “Three Cups of Tea,” by Greg Mortgenson and David Oliver Relin. A failed climb of the treacherous K2 in Pakistan left Greg Mortgenson lost in the Himalayas and almost dead… until he is cared for by Pakistanis in a remote mountain village. The true story of one man’s vision and mission to build schools for impoverished children in Pakistan’s remote frontier, a breeding ground for the Taliban, to enlighten and educate children who might never receive eduation. In his work, he has inadvertently become an expert on the culture, history and struggle of people in the hinterlands of Pakistan. While not a seamlessly written book, the story is so compelling, and the mission so vital and amazing, you will not be able to put it down. Greg Mortgenson is not a saint or a genius, just one determined and focused man with tremendous compassion, and I would say, a “mighty” heart. Not just a great story, but it conveys what I feel the people of Pakistan are truly like: warm, full of faith, suffering and gracious. And Greg shows us the wisdom of fighting terror with education and compassion, not weapons. Go to www.threecupsoftea.com to learn more, to order and to see where Greg will be speaking. I intend to hear him when he comes to Massachusetts early next year. Four stars!

Miracles in Pakistan


Assalam-a-laikum! I am home after a 24-hour flight and nine-day trip to Pakistan–the “Pure Land”–a place I can easily call a second home. This is my fourth visit, but the one with the most amazing results for hemophilia care. The years of hard work we have all expended are bearing their fruit for the patients who suffer with hemophilia. It was as if a miracle occurred: the government of Pakistan in the Sindh province will for the first time in history purchase factor for the patients! And, incredibly, will fund the first hemophilia treatment center in Karachi!

I will explain more in a bit. First, I had difficulty even finding the time to blog; Julia Long and I were kept on a rigid and packed schedule, to make the most of our visit. In our second day in Lahore (see the two previous posts to learn about the first half of our trip), we visited the Hemophilia Patients Welfare Society (HPWS) Lahore office, and visited with Dr. Shahla Sohail, a pediatrician and woman with VWD who helped establish the chapter. The chapter is well run and busy, attending to over 300 patients. It was a pleasure to see so many young men with hemophilia involved in running the chapter, including Fareed Malik, the young but able president, and Farooq Ahmed, a young man who is employed by the society, and who I met eight years ago! It was fabulous to see this young man who was a dependent patient previously, now an employee, earning his own way and helping his fellow brothers with hemophilia.

Dr. Shahla had us meet some beneficiaries of Save One Life, who came to the headquarters. We also toured the clinic, and met with Bilal Ahmed, a 12-year-old boy, severely anemic and malnourished, who arrived to receive factor (see photo). He had been brought by his father in a journey that took six hours to get to the clinic. The child was shy with us and when asked if he knew who we were, replied, “They are fairies.” He had never quite seen the likes of us! We pledged to include him in the Save One Life child sponsorship program, and the Lahore chapter of course will continue to provide care for him.

We also drove quite a ways in the heat, dust and traffic to a village where another beneficiary, Adil, and his brother Zubair live. They are sponsored in the US by Patrick Schmidt, CEO of FFF Enterprises, who also sits on the board of Save One Life. We were given an incredible welcome by these very poor people, including a lovely shower of pink flower petals, and many hugs and smiles. Their joy at having foreign visitors to their humble home warmed our hearts. We learned that Adil was doing quite well but often missed school due to bleeds. Save One Life sponsorship money pays for a tutor to come to his home so he does not fall behind in school. We pledged to buy him a computer, which was his only wish. Everything in Pakistan revolves around family life and education, and computers are relatively cheap. It’s a great investment for a young man!

Then off to the airport for a two-hour flight to Karachi, a bustling port city that used to be the capital of Pakistan. Hot and humid, bursting with development and choked with traffic, Karachi is an amazing city that captivates. We had a reunion at the airport with members of the HPWS Karachi Chapter, and retired to the hotel for an overnight rest. The next two days would be packed for Julia and me.

On Friday, I first met with Ali Hakim, who works for Hakimsons, a distributor of factor products in Pakistan. He had arranged the logistics for an import of a rare donation of factor I product from CSL Behring in Germany. This was an amazing case: just weeks before leaving for Pakistan, we received notice that Alyzay, a two-year-old girl in Pakistan needed surgery to correct a cleft palate, but had factor I deficiency (see photo below). An operation would be difficult if not impossible. The product was not available in Pakistan. We called our contacts at CSL and within days had the product donation secured and on its way. Meeting the family and baby was touching and satisfying. The parents repeatedly thanked CSL, Hakimsons and Popular International, from where the original request had been made to us.

Next we met with the HPWS board members, and I was impressed with how far they have come in the seven years I had been away. They have more patients registered, are better organized, involve more patients and family members in running the society and are supported by a great roster of contributors. The headquarters are located in the Husaini Blood Bank, a prominent place for patients to go for infusions of plasma and sometime factor, when possible. On our visit on Friday, many patients had arrived to meet us. We shook hands and distributed donated toys to the children, who alternatively beamed their thanks or shyly buried their faces in their mothers’ colorful “shalwar kameez,” the comfortable traditional Pakistani clothing worn by females. Julia was able to see first-hand the people who benefited from our donations of factor from Project SHARE.


After the family meeting we toured the blood bank, and I was truly amazed at the renovations and improvement of the bank since I last visited. Air-conditioned, with TV sets for the children who often sit long hours getting treatment, clean and well staffed, the Husaini Blood Bank has evolved into a developed and enjoyable place to get treatment. Much congratulation goes to Dr. Sarfaraz Jafri and his team for their hard work. We took an excellent lunch at the elegant home of Mrs. Sarwari, who helps the society, and then were whisked off to visit patients in their homes. This part of the trip is always my favorite. I like patients to know that other people in other countries care about them and want to help, and I am always humbled by their faith and how they cope without sometimes even the basics in life, such as running water, electricity and of course, factor.

Friday evening, April 20, we were given a wonderful dinner at a restaurant by the HPWS. With us were so many friends and colleagues, including the HPWS staff, board members, doctors, and patrons. Pakistani food is simply delicious–spicy, varied and plentiful. After dinner we were given beautiful gifts in appreciation of our visit and our help. Last year, we donated over 1.5 million units of factor to Pakistan, which became our single largest beneficiary of aid. In the US, this amount would cost about $1.5 million.

Saturday, April 21, was a day that could go down in history for Pakistan hemophilia care in Karachi. Up till now, the government of Pakistan has not contributed to hemophilia care. Much of the work of organizations like mine and the World Federation of Hemophilia (WFH) is to eventually encourage the government to give support, by establishing hemophilia treatment centers and above all to purchase factor. Just last fall the Islamabad chapter was able to secure a 100,000 unit purchase form the government, something that had never before happened in Pakistani history. I know 100,000 does not impress those in developed countries, where this amount would only cover one patient for one year, but for Pakistan, this is a major breakthrough. Though Pakistan is a developing country, it ranks as one of the highest spenders on military as a percent of GDP. The government has money–and tapping into government funding for factor is the best hope for people with hemophilia, who currently must rely on plasma, which carries the risk of blood borne pathogens. And even plasma is out of reach of many people who live far, far from the cities and for whom transportation is unavailable. Plentiful factor, education, and home treatment must be the future of Pakistan.

Saturday morning, I met with the Sindh province senior Minister of Health, Mr. Syed Sardar Ahmad (see photo), with my colleagues Dr. Tahir Shamsi, hematologist consultant, and Dr. Shahid Noor, orthopedic surgeon and chairman of the HPWS Medical Advisory Board. Incredibly, after hearing our report of hemophilia needs in Pakistan, Mr. Ahmad on the spot promised to purchase factor–something that has never been done before in the Sindh province. On top of that, he also pledged to support the development of three HTCs in Karachi! This will mean true comprehensive care for all patients. The Sindh province is the second most populated in Pakistan, with over 30 million people, and Pakistan is the sixth most populous country on earth. This means a revolution in care for those in Sindh. We left the meeting beaming, our emotions soaring, with gratitude to the government of Pakistan, in particular to Mr. Ahmad, who so sincerely and obviously cares for people with hemophilia.

Later that day, Drs. Shamsi and Noor, and Saeed Ahmed of the HPWS, and Julia and I went to the Jinnah Postgraduate Medical Center, and asked the executive director, Dr. Rashid Jooma, if his center could be one of the HTCs in Karachi. We did this having just received the confirmation that morning from the minister of health! Rarely have I met a person who listened as deeply as Dr. Jooma. He took in all the statistics and anecdotes we shared about patients with hemophilia, and replied with insightful questions, to learn more. Ultimately, he gave his pledge that yes, this would be one of the HTCs. We could scarcely contain our joy. A true HTC with comprehensive care. This was surely a dream come true!

This is what we have all been working for, for at least eight years for me, and longer for the HWPS. You all know I have a son with hemophilia, who has the best medical care in the world, and all the factor he needs. We have longed to give back to the world, not just in charitable donations, like money or factor, but in encouraging the governments and people of the countries we visit to also invest in hemophilia care, to provide comprehensive, long-term care for their own people. While I love the Pakistani boys with hemophilia as though they were my own sons, they are not in reality. They belong to the Pakistanis, who must care for their own. After this day, they are further on that road than we all even dreamed they would be.


We celebrated that evening with a grand reception at the home of Dr. Ehsanullah, affectionately and reverently known as the Founder of Hemophilia Care in Pakistan. He welcomed about 50 patients, doctors, patrons and HPWS members for a feast. There were many speeches, congratulating the hard work of everyone present, congratulating the accomplishments of the day. In response to an electrifying speech by Dr. Shamsi, attendees began pledging support for children with hemophilia through Save One Life. In about 10 minutes, we had an additional 43 children with hemophilia sponsored! This is the equivalent to a donation of about $10,000 that will go directly to the HPWS and families. It was another miracle in a day of miracles. And the biggest and most stunning surprise of all was when Mr. Iqbal Billoo, who runs Popular International, a private company that supports the HPWS, and is Pakistan’s distributor for Koate DVI and one of the only providers of factor concentrate in the country, pledged to give for free factor to any family who could not afford it. I honestly cannot tell you in words what this means; I cannot adequately express my gratitude for this profound gift. This is unheard of and unprecedented. Our deepest thanks go to Mr. Billoo and his company, for their complete devotion to patients who suffer with hemophilia, and for rewarding our hard work.

Thanks to everyone for an astoundingly productive and enjoyable visit: to the HPWS in Islamabad, Rawalpindi, Lahore and Karachi for their great progress and achievements, and for their hospitality to us; to Popular International for their attentive help to ensure we were cared for in each city, and for escorting us to our various meetings; to the health ministries we visited; to the many hospitals and clinics we toured; and above all, to the hemophilia patients, for attending our World Hemophilia Days, for inviting us to their homes, to share in their struggles and family lives, and who rely on us for help.

Pakistan is a country stimulating to the senses: we recall the waves of heat and crush of humanity in Karachi, a city of 15 million; women swathed head to toe in black burkas; the magnificent architecture in Lahore; recitation of prayers over city-wide intercom five times a day; the incessant beeping of cars and busses like wayward alarm clocks; the pungent scents of rich spices from roadside vendors; the fragrant wafts of Jasmine flowers wrapped around bracelets bought from young street hawkers… these things no longer awe me as when I first traveled, but still awaken my senses and fill me with life and joy. Pakistan International Airlines promotes Pakistan as “Heaven on Earth,” and I can see why. It is not like a sunny island in the Caribbean to visit–it’s not that kind of heaven. It has massive poverty along with its majestic mountains; pain along with its pride. But it is heaven in terms of its exquisite beauty–which I see reflected in its people, topography, history and potential. Sadly, the west has such a distorted view of Pakistan. It is a country with warm citizens, full of faith, compassion for one another, and used to working hard. Pakistanis are devoted to family and education; probably there are no better parents on earth. We were treated with kindness and graciousness everywhere we went. The doctors are among the best on the world. All we need is a little more time, to improve hemophilia care, with faith, discipline and unity, which happens to be the motto of Pakistan. Faith, discipline, unity…this past week has shown us that belief in these can move mountains and make miracles.

(Photos: Tomb of Jinnah, founder of Pakistan; boy in Lahore at the HPWS for treatment; thalessemia patient at Husseni Blood Bank; Laurie and Julia get tour of blood bank; meeting with Mr. Ahmad, health minister of Sindh province; home visit to new beneficiaries of Save One Life)

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