China Repeats Our Nightmare

A heart-breaking story comes out of China, one that too many in our own US community can relate to: trying to wrest compensation for HIV and hepatits C infection from tainted blood products. The news wires are reporting that the Heilongjiang Province family of Wang Lei filed a lawsuit over the infected factor VIII in June 2003 at Changning district court in Shanghai. It appears that big city families are already getting compensation; Shanghai-based hemophiliacs each had their medical expenses reimbursed. But families from rural areas and distant provinces are getting no help.

The Chinese courts claim that the plaintiff failed to provide sufficient evidence and an HIV virus infection might have come through any one of multiple channels, according to Wang Lei, the father of the boy. The courts are telling them to find compensation elsewhere.

We all know that trying to get anything done in a Communist regime is a nightmare of bureaucracy. “After further court failures in his home city of Harbin, capital of Heilongjiang,” the papers report, “Wang and his peers have trudged thousands of miles down the many and various hopeless petitioning bureau lines of China. One out of every 500 petitioners, or 0.2 percent, have their problem actually solved, according to Yu Jianrong, a researcher at the Chinese Academy of Social Sciences, in his 2004 report The Deficiency of Petition System and its Political Consequences.”

Eight years of struggle with the Shanghai Institute of Biological Products and its parent pharmaceutical company of Sinopharm has not paid off. By contrast, Hong Kong-listed Sinopharm – the China National Pharmaceutical Group Corporation – reportedly earned over 700 million dollars in 2008. Its revenue in 2007 reached 35 billion yuan.”

And recently, on December 30, the news really hit the wires when the family and other families with hemophilia petitioned in front of the Beijing headquarters of Sinopharm for a compensation package for the 15-year-old blood contamination scandal.

They’re asking for about $146 as living expenses and also hotel fees from a month’s petitioning in Beijing, plus six vials of factor VIII. Six vials. For all their troubles!

After three rounds of negotiations, Sinopharm agreed to offer each patient $1170 “consolation money” and paid their Beijing hotel bills. “The petitioners were reminded that the company will make no more payments and accept no more petitions,” one story reported.

Sinopharm’s corporate slogan? “Care about life. Care for health.”

The father, Wang Lei, has paid for his son’s treatments by borrowing from relatives. Compounding their problems: he and his wife were laid off in 1997. They are running out of treatment options.

China has about 130,000 people with hemophilia, and about 1,000-2,000 are HIV-positive. Two bright notes: China now has a dynamic patient-based group called Hemophilia Home of China, which can help families like Wang Lei, and Asia Catalyst, a non-governmental organization based in New York, has raised some suggestions for China’s population with hemophilia and HIV to help keep the good fight going. It’s a fight well known to some hemophilia veterans here, who have known the rejection, isolation and hopelessness, but who eventually prevailed, at least in the courts. Let’s hope China achieves that one day soon.

From “Wrong blood, wrong place, wrong time,” Global Times [22:42 January 07 2010] By Yin Hang

Great Book I Just Read
The Long Walk by Slavomir Rawicz
This incredible story of survival recounts the remarkable true tale of a 24-year-old Polish soldier who is captured by the Russians, held for 18 months in brutal, subhuman conditions while being interrogated, and eventually set on a 1,000 mile journey to prison in Siberia. The scenes of camping in a subzero degree frozen wasteland in nothing more than shirts and pants defy the imagination. He has to walk, while chained by the hand to a truck, for miles and miles until they reach the prison. He never once gives up on escape, though he is surrounded by the brutal winter of Siberia. But he does it, with six other men, and they walk literally thousands of miles, even through the Gobi desert, to reach British-held India. Incredible story of survival, told without a hint of “why me” or injustice or bitterness. Must read! Four stars.

Parents Sue Over Birth of Child With Hemophilia

The newswires are alive with this story: An Australian couple are suing their doctor because their baby was born with hemophilia. The mother knew she was a carrier. She knew in-vitro fertilization could not guarantee a daughter… and the result is a gorgeous baby named Jess who apparently has caused such emotional damage that the parents want financial retribution. Now age three, Jess is at the heart of what could be the first of a kind lawsuit.

“We love our little boy, but we are very sorry he has to go through so much in his life,” the couple told The Sunday Telegraph (Australia).”We tried everything to avoid this situation, and now our boy has to go through all the pain and treatment in order to survive. We now face the fact that Jess will require treatment for the rest of his life.”

Part of me wants to shriek “get real, grow up, toughen up, face the real world.” Suffer? After reading about what inhibitor patients endure, it’s unlikely Jess will suffer much. After visiting so many developing countries where NO treatment exists, Jess is living a dream come true. Good family, great health care system, plentiful medicine, no threat of viruses… from where I stand they are very lucky people… yet still they are seeking retribution.

“Paul and Fiona (who do not want to reveal their surname) are claiming damages for the shock and nervous anxiety caused by the unexpected nature of the birth.” Get in line… thousands of families have dealt with it–with no family history, no warning whatsoever. Their claim seems to negate all the emotional suffering the rest of us go through–and eventually get over.

I was speaking to another mom today about this case, which has everyone buzzing. She thinks the parents are just not informed about hemophilia today (the mother’s brother had hemophilia and was crippled). But I wondered, are they not aware or too aware? Are the parents profiting from something we all learned to accept, and they under took this risk willingly? They claim no one told them Fiona was carrying a boy, despite ultrasounds (and she didn’t ask?); had she known she would have aborted. Are they truly in agony, three years later? Are they just not aware of how good life can be with hemophilia in developed countries? Or are they looking to make a killing from the physician’s insurance, which also drives up health care costs for everyone?

But wait. In speaking with this mom tonight, I realized we are only skimming the surface. Snap judgments based on media reports are dangerous: what is the media not telling us? And despite what they print and even what the parents tell them, perhaps there is a bigger, more important plan here. Perhaps the situation wasn’t handled well medically. After all, they were assured at some point that what was selected and implanted was a female embryo. They must have paid good money for this procedure. Throughout her pregnancy, if she is correct, no one told the mother she was carrying a boy (hard to imagine no one thought to ask!! and where were the ultrasound pics?). And if the baby was a boy and the doctor knew, could the doctor have put the baby at risk of a head bleed by having a natural birth (the article did not say if the baby was born naturally or by C-Section)? If all this is true, maybe there was true medical negligence and what is being sought is not so much emotional damage (obviously they are not so damaged they cannot be good parents to Jess) but a punitive measure against the medical facility that failed them in so many ways. In this manner, the lawyer has to follow whatever strategy works to get that justice.

Tough case to judge. I hope the parents at heart are grateful for Jess. Knowing how fiercely almost all parents of children with hemophilia I have met love and protect their children, it is painful to read about the burdens they say this child is causing them –even if it is only said for the benefit of the courts to seek justice for all. It will be interesting to hear more of the facts come out and hear from the hemophilia families in Australia comment on this case. Thoughts, anyone?

Book I Just Read
The Alchemist by Paulo Coelho. I generally like Coelho who has a lovely, simple style of writing but usually manages to capture fundamental themes on life and the human character. Here, Santiago, a shepherd, leaves his life behind to follow his destiny after a dream about searching for a treasure at the Egyptian pyramids. He meets assorted people along the way who help him rethink his journey and ultimately his destiny. This book is a quick read, enjoyable, easy to understand. I don’t think it is Coelhos’s best by a long shot. It’s a bit too simple, though I enjoyed it because it was about traveling, far way places and above all following your destiny. I thought the ending was a disappointment–too much like a neat Hollywood ending. The book has met with mixed reviews. If you are spiritual, seeking or just like light tales with thought-provoking questions, you may enjoy this. Two out of four stars.

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