The last day of our trip to the Dominican Republic was reserved to visit the homes of four families with hemophilia. We started out bright and early, the tropical heat slowly rising with the sun, and headed for Bonao, a pretty town located on the roaring Yuca River. It took about an hour to get there, to meet with the Carlos Manuel and Jose Luis Ortiz. With me were Jeannine, executive director of Save One Life (a child sponsorship program), Haydee de Garcia, president of FAHEM, Maria Espinal, nurse at the Robert Reid Cabral Hospital, and Zoraida, general manager of LA Kelley Communications. Zoraida sponsors Jose Luis, a young man with hemophilia, and our visit would check on how he and his brother were.
Meeting with them was pure joy. The Ortiz brothers are natural poets, and every word and sentence is chosen to express kindness, civility and warmth. No matter that they have hemophilia, that their family struggles economically, that they both have severe joint damage that leaves them with unbending knees and hobbling gaits. When you are with them, you are the most important thing in the world. They exude a kind of hospitality very rarely found. Marisa, their mother, had not seen me in about four years and we pounced on each other with hugs. She laid out a fantastic meal. We then walked down to the river, to see the beauty of Bonao. It was a lovely visit. We were sorry to leave.
An hour later we were searching for the home of the Gimenz family. They live on the fringe of Santo Domingo in a place I am sure very few if any Americans have seen. Dirt roads, towering palms, rows of tin roofs with chickens scuttling everywhere, this village or settlement is remote, not easily accessible and devastating for two children with hemophilia. Angel is only six and almost died in December from a head bleed. Thankfully, his mother, also named Zoraida, was educated by FAHEM about symptoms and knew what to do. Angel was hit in the head and began exhibiting symptoms of a head bleed; he was brought to the hospital that night. A miracle considering Zoraida does not own a car nor have much money, and transportation is questionable and unreliable. Angel’s older brother Andres watched and listened as we heard this story, occasionally smiling and dropping his head shyly when we looked at him. He had just attended camp with us. An extremely handsome young man of 15, he has a killer smile and a friendly manner. He gave me a brief tour of their tidy wooden home, only three rooms, shared with four dogs, cats and a hen and rooster in the back. Both boys need sponsors, so if you are interested in helping this family, please go to www.SaveOneLife.net and let us know!
Next stop, the Vasquez family, who live closer to the capital and down a small tienda or shop selling candy and things. The shop is really just a window from which they display what little they have to offer. Gabriel is the young boy also looking for sponsorship. Last stop was the home of Misael and Jayro Medina. Misael attended camp as a counselor and did a great job. His brother Jayro, deeply religious, has not walked in years. So many bleeds left him bedridden, during which time his muscles atrophied. But he does not whine or complain but shows again that warm hospitality. Though these are men, we will still look for sponsors to help ease their burden in life. Their father only earns about $25 a month, and life is expensive in the city.
Seeing the conditions of the poor, the crippled joints of hemophilia, might leave a person feeling overwhelmed, stunned, depressed. But not us. We feel honored to have met these families, impressed at how confidently they face life’s harsh challenges, and motivated to help them financially through our program. We saw the kids at camp who are already benefiting from having a sponsor–they use their sponsorship funds to travel to the hospital, to buy medicine, to stay in school. The Ortiz brother attend college and will one day get jobs in the tourist industry, where they can charm visitors to their land, thanks to the support from Save One Life, for funds, and Project SHARE, for factor. They are one success story among many; and you can help us have more. Adios for now!
Yesterday was so busy at camp I didn’t have a second to blog. The day started with some wake-up exercises on the lawn, in this case a dodge ball game. All the campers and staff are wearing T-shirts with the camp name on it–“Yo si pudeo!” After breakfast, the campers listened to a lecture by a lively orthopedic surgeon who used Bob the Puppet (renamed “Pepe”) to demonstrate joint damage in a kid-friendly way. Then off to the pool! Wow, did the children come alive! All campers are divided into groups, who give themselves team names (like the Stars, or Alpha-Omega), chaperoned by teens with hemophilia, who used to be campers themselves. And they were wonderful! Like big brothers to their little “hermanos” with hemophilia.
After lunch came another lecture, then arts and crafts, with board games for those who opted out of arts and crafts. Then practice of the big event–a talent show! And what a time it was. What imagination! Each team presented a skit, something to do with hemophilia and empowerment. No one told them what to do. They just instinctively wanted to do skits that showed how they were empowered and who anyone could be empowered. Most of the skits were hysterical, showing comical situations and exaggerated characters. But one took a serious turn when it showed a father coming home drunk and striking his child with hemophilia, the mother helpless. Domestic abuse is a huge problem in Latin America and the boys deftly integrated this social problem with hemophilia. Prizes were awarded to everyone, and then the real fun began. Dominicans are expert dancers and the DJ (Horatio, former camper) pumped out some wild merengue and salsa for everyone to dance to. Not even hemophilia and arthropathy can keep these boys from dancing. We had a conga line, contests, and everyone–from patient to staff to hematologist and nurse–got in on the fun.
Today was a bit more subdued. At least no bleeds as a result of the dancing, thankfully! The camp celebrated a Catholic Mass in the pavilion after breakfast, followed by heart warming testimonials from the older boys about the role faith plays in their life with hemophilia. They spoke directly to the younger boys, instructing them to pray and keep faith even in the darkness of a bad bleed. Later, everyone went for another swim, and then had lunch. The weather was beautiful, sunny and hot.
Though camp was only two and a half days, close bonds were formed, even for the new boys. We enrolled more boys into Save One Life, to help them financially. Tomorrow we will visit some of the boys in their humble homes.
The bus arrived and everyone departed back to Santo Domingo, a quick jaunt, to congregate at the Robert Reid Cabral Hospital and to await some anxious parents. Happiness shown on the faces of both parents and child as they were reunited. The boys were armed with toys donated from the New England Hemophilia Association, and infused with factor donated from Project SHARE. Does it get any better than that? It was a great camp; it seemed so effortless, but tremendous planning and coordination goes into a project like this. We will miss all the boys dearly as another year passes. Hasta el proximo año !
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)
We had a wonderful visit on Friday with AmeriCares, a large nonprofit that donates medicine to the developing world. Nestled in the quaint New England city of Stamford, Connecticut, AmeriCares is a world class organization on a mission dear to our heart: bridging the gap between the haves and have-nots through donations of life-saving medicine.
We’ve worked with AmeriCares for many years, but have never visited its facility. We were greeted warmly, and had a fascinating tour of the warehouse, which stocks donated biologics and pharmaceuticals from many companies. We learned about their operations, and noted the framed display of many presidential letters of gratitude and congratulations for its emergency international relief work, dating back to the Nixon era. Founded by Bob Macauley 25 years ago, after he helped to rescue Vietnamese orphans following a harrowing plane crash in Saigon in 1975, AmeriCares is now recognized as a leader in humanitarian shipments of medicine.
In the US, Project SHARE is recognized as a leader in donated factor: 9.7 million units in 2006 to 45 countries, representing about $9.6 million. Not bad for a company with 2.5 employees! As AmeriCares also receives donated factor from Baxter, we team together to share information on requests, recipients and operations, so there is no wastage or overlap. Since 1990, AmeriCares has received an astounding $99.3 million in products from Baxter! We were thrilled to meet our fellow teammates, and to wish them well on their first trip to Romania this coming week. There, they will meet all the doctors who treat hemophilia patients, who we also work closely with.
Eastern European Program Manager Jim O’Brian and I were surprised and delighted to learn we are both alumni of the Fletcher School of Law and Diplomacy! Not very often you bump into someone from that international program at Tufts University.
Project SHARE director Julia Long and I are proud to work with AmeriCares, to bring more medicine and better care to those in poverty and in medical need. For more information, see www.americares.org
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