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Sunday, January 07, 2018

Pakistan 3: “82 patients, 82 stories."


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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.

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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

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