Blog Archive

Monday, April 30, 2007

Guinea Pigs for Profit?

I hope you all have been able to read about my fascinating trip to Pakistan. Feel free to post your comments! We've generated a lot of interest in this country and our humanitarian work.

When I arrived home, I was looking for my letter to People, which was to be published. They only published two lines, which were pretty generic, and missed the whole point of why I wrote. Now I know how my writers feel when I edit them! Here's what I really wrote:

"I was outraged to read about legislation to mandate that 9-year-old girls in Texas get the Gardasil vaccine for human papilloma virus (HPV) or face expulsion from public school. Kudos to Merck for developing this vaccine for this virus, which has been linked to cervical cancer, but it should be a matter of choice. I am behind the parents' moral outrage 100% but this is also a violation of civil rights. Children are entitled to an education, a right not contingent on a disease that is not a pandemic. It's not the chicken pox, measles or bird flu. You get this virus by sexual contact. A girl should be educated about its availability, and given a choice to use it when the time is right. This is a family and eventually individual decision.

"But your article missed an even greater outrage. This could be mostly about economics. Pharmaceutical companies are among the most powerful lobbyists. They wield extraordinary influence over lawmakers and the doctors who drive the clinical studies and who prescribe. Mandating a vaccine for such a young population not even at risk is irresponsible, immoral and smacks of being profit driven. Your readers should know that the internet is buzzing with questions: Does Texas Governor Rick Perry have ties to Merck? Is his former Chief of Staff currently the head of Merck's Texas lobbying team? Did Perry receive $6,000 in campaign contributions from Merck? And, could mandating vaccinations help cover sales lost by the withdrawal of Merck's Vioxx from the market? 20 states are now considering forcing our girls to get this vaccine. Are our little girls going to be guinea pigs for profit? Shame on Merck, and Texas Governor Perry. Parents, fight this one on moral, civil and economic grounds, all the way to the Supreme Court if necessary."

Note: Gardasil does not guarantee protection against HPV, and does not protect against all types of cervical cancer.

Monday, April 23, 2007

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)

Wednesday, April 18, 2007

World Hemophilia Day, Lahore


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.)

Tuesday, April 17, 2007

World Hemophilia Day in Pakistan


Today is April 17, the birth date of Frank Schnabel, a Californian with hemophilia who founded the World Federation of Hemophilia 44 years ago. I am privileged to be able to spend this important day with our friends in Pakistan!

Julia Long, director of Project SHARE and I are having an exciting and fascinating trip. We arrived on Saturday in Karachi after a 20 hours in transit and within a few hours Julia was having a camel ride by the Arabian sea! On Sunday evening we flew to Islamabad, the capital, in preparation for today. On Monday we toured the government hospital, PIMS, which offers free care to all with hemophilia. I visited this center in April 16, 1999, on my first trip to Islamabad, and on that very day eight years ago helped to open the Rawalpindi chapter in a general meeting with patients, parents and treaters. (Rawalpindi is a town next to Islamabad, and the location of PIMS) It was an incredible feeling to be back, and to see how our initial efforts have blossomed. They not only have a comprehensive treatment center, but a strong, vibrant chapter that could be a role model for other developing countries. Congratulations on this day to this amazing chapter, and to amazing Pakistan!

Today I gave a talk which emphasized what I think Frank Schnabel would have emphasized--unity. Unity among hemophilia communities, unity among chapters, between doctors and patients, between government and the hemophilia society, and between countries with hemophilia. We celebrated with great joy a major success-- the government of Pakistan recently has made its first ever purchase of factor for patients! We also noted Project SHARE's recent 1.6 million unit donation to Pakistan, valued at $1 million. And we announced the opening of Save One Life in Rawalpindi, which will provide needed sponsorships from Americans directly to impoverished Pakistani children with bleeding disorders. We already started Save One Life in Lahore (where I am currently writing this from), and were pleased to now include Rawalpindi and Islamabad.

Later we had a Q&A in which the patients asked great questions. Julia and I were able to meet with many patients and parents; we handed out toys to the children (colorful, inflatable globes to emphasize World Hemophilia Day, compliments of Mark Zatyrka of AHF, Inc.), which the children loved! We had lunch with all 100 patients, took a group photo and with some tears and many smiles, left to visit the stunning Faisal Mosque. Then off to the airport!

Pakistan is an amazing country: descendant from an ancient civilization, with the sixth largest population on earth, and almost completely Muslim. It has expert and compassionate doctors who are dedicated to helping hemophilia patients, and patients who are grateful for all aid. The Pakistanis are grateful to all the Americans who donated factor to SHARE and who have expressed compassion to their suffering and need. Above all, Pakistanis are incredibly gracious people, who treat everyone like honored guests. I have traveled the world, truly, and have rarely met such an amazing and genuine display of civility, manners and hospitality. I guess that is why I keep coming back! This is my fourth visit, and hopefully, just the beginning. We have a lot of work to do, and I would be honored to continue to work with Pakistan. I hope you might join me in supporting their children, who are in need of sponsors.

Please see www.saveonelifeinc.org if you want to learn more! We will soon have about 10 more children in need of sponsorships.


Please tune in tomorrow for more news on our trip!









(Photos: A Great Welcome from the Rawalpindi Chapter, Julia and Dr. Samina with the donation of factor from Project SHARE, Laurie and Julia at the Faisal Mosque in Islamabad, A Islamabad Street Scene, Laurie with mothers after her presentation on hemophilia A, group photo of patients, doctors, Laurie and Julia on WHD in Rawalpindi, Umer, a beneficiary of Save One Life, and his family)

Monday, April 09, 2007

Note to People Magazine

I received a welcome message from People Magazine this weekend-- my letter to the editor will be published in the April 23rd edition. In it, I suggest that People magazine covered only the tip of the iceberg in its article about Texas forcing 9-year-old schoolgirls to be innoculated against the sexually-transmitted human papilloma virus... or face expulsion from public school. Ridiculous? It's happening. Read more about this outrageous law and why I was so frustrated with People and so outraged against Texas governor Rick Perry... and the pharmaceutical company that makes the drug.

This Friday I head out for a 10 day trip to Pakistan. I am visiting to see how our factor donations are being used (we donated 1.6 million units last year, our largest single donation!) and also to enroll more children in Save One Life, our nonprofit child sponsorship program (www.saveonelifeinc.org). Would you like to follow along with me on my trip? I am going to do my "level best" as they say in Pakistan, to post blog entries and photos. Please check in and see my visit to this ancient land, and currently a political hotbed of activity. Should be exciting and rewarding. This is my fourth visit and I can't wait to see the many hemophilia patients I know, and their superb physicians and compassionate hemophilia society. Stay tuned!

Monday, April 02, 2007

When the Experts are Ignorant

Dr. Lawrence B. Werlin may be a renowned specialist in reproductive endocrinology and infertility, but he doesn't know squat about hemophilia. The March 23 newswires carried his announcement that his technique known as Preimplantation Genetic Diagnosis (PGD) allows couples to screen their embryos for hemophilia, "and thereby remove the risk of giving birth to a child with hemophilia."

To market his new technology, he offers the "scary" scenario of what it is like to have hemophilia--if you were born in the 1940s. He quotes a woman who reflects that her father was only given till age 10 to live. He died in his early 50s, although the article does not say what year he died, or what he died from! (Maybe heart disease?) He also incorrectly cites statistics, which he claims "point to hemophilia as the cause of death for 32 people every week." What? 32 patients every week? That's 1,664 patients a year dying from hemophilia. That's a 300% negative birth rate for people with hemophilia. I guess with statistics like these, we don't need PGD. Nature will take its course.

Sadly, the article uses these incorrect scare tactics (or shoddy stats) to market this new procedure. I am all for choice, but let's be clear about what hemophilia really is in the US: a completely manageable blood-clotting disorder, in which patients can lead normal lives and enjoy a normal life span. And we have 18,000 people in our community who can prove it. To misrepresent it as he has in his article is to encourage parents to engage in a medical procedure based on incomplete and incorrect information that could compromise their ethics--and eliminate the natural selection of some beautiful children, like our sons. If parents don't want or can't handle a child with a medical condition, so be it. But to "eliminate" that child because their doctor leads them to think he will suffer horribly or die at a young age is just plain wrong when it comes to hemophilia. That's medical irresponsibilty and ignorance--and pretty slick marketing.

To read the article: www.huliq.com/16289/pgd-eliminates-threat-of-hemophilia-in-newborn-babies
 
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