When the US went through in the 1970s and 80s what is now called the “Hemophilia Holocaust,” up to 10,000 patients with hemophilia died. Donated blood that was infected with HIV and hepatitis C was never tested for viruses back then. Thanks to the advocacy of the patient community, along with the help of some doctors, the nation’s blood supply was destroyed and advanced testing and safety procedures were instituted. This tragedy also led to the creation of recombinant blood-clotting products, that are not made from human plasma. The result is that HIV and hepatitis C are no longer transmitted through blood-clotting products.
So to read that 40% of hemophilia patients tested positive for hepatitis B and C and 2% for HIV during a recent mass screening was both disheartening and shocking. It happened in Karachi, Pakistan, a city I’ve been to many times, specifically to visit the hemophilia patients and advocacy groups. I had thought they had come a long way since my first visit there in 1999. Pakistan has the sixth largest population on earth, and so probably has the sixth largest hemophilia population. These results are shocking.
Even though Pakistan receives donations of recombinant factor from overseas, there just isn’t enough for everyone. Some patients must resort to using cryo from blood banks, and are at risk of contracting blood-borne viruses.
Fortunately, all 242 patients who tested positive were given the first dose of hepatitis B treatment. At least that’s something.
The local advocacy group is requesting the Government of Sindh (of which Karachi is a part) for further testing and to ensure provision of anti-hemophilia injections at Hemophilia Welfare Society-Karachi treatment center.
While the developed countries look forward to more advanced ways to deliver factor VIII, including gene therapy, most hemophilia patients around the world struggle to get any care, whether cryo or recombinant. Each month I ship out little packets of factor to patients in all corners of the earth. It seems a drop i a vast ocean, but at least it’s something. We need to support the national and local advocacy groups worldwide to carry on the fight that we once engaged in, not too long ago.
We lost a few of people in our bleeding disorder community over the holidays, including young people with hemophilia. But in two weeks we lost two outstanding leaders in their fields. One was Val D. Bias, who I wrote about last week. The other was Dr. Tahir Shamsi of Pakistan. Both were my friends.
Tahir was a special sort of friend to me. We inhabited very different worlds: I am a woman, Christian, nonmedical, American. He is a man, Muslim, nationally-recognized physician and researcher, Pakistani. We were united not only by hemophilia, but by our burning desire to alleviate suffering.
We met on a boat in Rotterdam, in 1998. I was just beginning my work overseas, funded at that time by Bayer Corporation. Bayer had sponsored this cruise around the harbor, on a Tuesday evening during the World Federation Congress. As I walked about the ship, I saw him and he saw me. He is friendly, but intense. Efficient, wastes no time. Who was I and what was I doing there?
Laurie and Tahir’s First Meeting – 1998
I explained about my program to identify patient leaders in developing countries, and teach them about leadership, not just management; about advocacy, not just meetings. About vision, mission, goal setting.
He invited me on the spot to come to Pakistan.
That startled me. Me? Mother of three young children, in Pakistan? Pakistan at the time was pretty isolated from the world. Almost no one went there unless they were diplomats. It seemed so… so foreign. And yet I was intrigued. I love challenges and love risks. How would the Pakistanis accept me? What could I possible do for them?
He assured me all would be well. I could stay with him and his wife, and family. He would arrange my visits while there.
A year later, I went. It’s a story for another time (maybe another book) but I fell in love with Pakistan. Never have I been so welcome in a country and made to feel at home. And that seems odd, given our “differences.” I learned the differences are mostly superficial. We have so much more in common than different. I returned three more times and would have gone in this past year, were it not for Covid.
Tahir and I maintained contact throughout the years; I watched his family grow from two young children to five. I played with his children at their house, rode camels and ponies on the Arabian sea with them, took selfies, went to the mall, and had a ball. And Tahir and I met patients throughout Pakistan, worked with the new hemophilia society to help it grow, and we supported his surgeries with donated factor. We traveled to Nepal together, met up in Paris at a conference, and always had ideas brewing.
In fact, it was in Nepal, after our huge conference we gave for medical personnel, that Tahir shared his vision for a new institute in Pakistan. Somehow, we ended up sitting on the floor of a coffee shop, with him sketching out (on a napkin!) an idea for a new blood institute that would handle all sorts of cases, disorders, diseases of the blood, and be a research and training facility.
1999 Laurie and Tahir on Arabian Sea First Visit to Pakistan
1999 Nepal Tahir and Laurie at temple
2000 Nepal Tahir Shamsi speaking
2007 Laurie, Tahir, Tuba, and Zohar
2007 Tahir with two of his beloved daughters
2007 Tahir & Mahnoor
Tahir, Minister of Health Ahmed, Laurie – 2007
It all came to pass. The National Institute for Blood Diseases was created and Tahir founded Pakistan’s first bone marrow transplant program. The president of Pakistan recognized him for his incredible achievements. And the president offered his condolences in a tweet shortly after Tahir’s passing.
He got up to go to work in December, as usual. We had just messaged one another about how I would come over as soon as it was safe to travel, and stay at his new home, which accommodated all his growing family. He messaged, “You are always welcome.” Combination work and social visit. The kids are mostly grown, though the youngest is still just 15. I imagine he kissed them good-bye, as he adored his family, and had his driver take him to the office. We would have had interns to meet with, surgeries and patient visits planned. I do know he felt ill suddenly, and asked to be driven to the hospital. He suffered a massive brain hemorrhage, of all things. He never recovered and died, age 60, with so many depending on him, with so many achievements, but I know with so many more things he wanted to accomplish.
I don’t ever recall him saying he had a vacation in the 23 years that I knew him.
His death shocked me. You can never believe so wonderful a healer could be so ill. I could and would just pick up my phone whenever, and could message this famous and highly regarded physician, and chat with him like you would a regular person and friend.
But no more. Never again. He was gone, in a flash, a heartbeat, as if he sped away to attend to a medical emergency and never returned. He was always helping others.
The grief over his passing was palpable and deep. The NIBD team wrote on Facebook: “He was a national asset, a mentor to the juniors, a patron for many noble causes and a fatherly figure to all. Our loss cannot be described in words as the void he leaves behind is unfillable. He was director of the stem cell program, paragon of health research, an outstanding individual with excellent mentorship abilities, and an incredible human being. May Allah grant him the highest place in Jannah. Ameen.”
I will return to Pakistan, but it will never be the same without my friend, this incredible pioneer of medicine. He was a transformational leader, of the rarest type.
On Friday, my team 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!”
But we popped out of our seats and stared at one 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.
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 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 Masood 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 M. 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 buses 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)
While today is not officially WHD, the Hemophilia Patients Welfare Society (HPWS) Lahore kindly celebrated it today so we could attend. Lahore is the lush capital city of the Punjab province, and with a population of 10 million, the second largest city in Pakistan. It was a wonderful celebration. Attending were patrons, all the doctors who assist patients with bleeding disorders, the HPWS board, and the Punjab Health Minister Muhammad Iqbal, who pledged to give greater assistance to those suffering with bleeding disorders.
An amazing array of about 150 patients attended: a young woman with VWD who had ovarian cysts and almost died but did not, due to one of Project SHARE’s donations; a young boy with hemophilia in great shape thanks to Ms. Faiza, the HPWS’s wonderful physical therapist; a baby who had a head bleed and sadly developed hydrocephalus and retardation–he was tenderly cradled by his devoted mother; a factor I deficient family whom we have pledged to help. I am happy to say the success stories by far outnumber the tragedies thanks to the dedicated care of the HPWS team. I was especially impressed by how the HPWS is grooming young men and women with hemophilia and VWD to assume leadership of their organization. Not an easy thing to do when there is limited factor and resources.
After the celebration and speeches came lunch, a Q&A, much hugging, smiling, sharing, curiosity. The patients, all Muslims and mostly poor, seemed genuinely touched that we had traveled all the way from the United States.
After the event, Dr. Shahla, who has spearheaded the founding and development of HPWS Lahore, and who herself has VWD, organized a fantastic trip to the Pakistan/India border to witness the “Flag Ceremony,” a ceremonial military show on both sides of the border of India and Pakistan, which are separated by only five feet called “No Man’s Land.” The spectacle was complete with goosestepping Punjabi militia, bugle blowing, shouted commands, flag waving, and tremendously cheering spectators on both sides, who cried “Long Live Hindustan” in reply to “Jiva Jiva Pakistan!” It was thrilling to see the iron gates of both countries open for one hour and for both sides to mirror their moves alternately in a mock display of military might for the crowds.
We thank the HPWS Lahore for inviting us today and allowing us to learn, teach, share and celebrate!
(Photos: World Hemophilia Day, Lahore, Laurie with girl with VWD who was operated on with SHARE donated factor, “Jiva jiva Pakistan!” at the India/Pakistan border.) See more photos from the trip here.
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