September 2007

And Now For Something Completely Different…

Laurie Kelley September 23, 2007

There really are weirder and more interesting legal shennigans going on than those of OJ, Britney and Senator Craig. You have to read this article posted August 30 in the Taipei Times:

“Man confesses bizarre life of crime”
By Rich Chang

Thursday, Aug 30, 2007

The Ministry of Justice is investigating the claims of a man who said that he stood in for a number of criminals by appearing for them at trial and serving their prison sentences. The man, who suffers from severe hemophilia, said he was willing to take the blame for other people’s crimes because he knew he would be released early from the prison sentences as a result of his poor health. Department of Corrections Director Shaw Ming-yi yesterday told a press conference that the man, Kuo Ronghui, 35, had been sentenced to a total of 36 years and six months in jail for a number of crimes, including offenses against public safety, theft, using and selling drugs and violations of gun, explosives and knife regulations.

Shaw said that Kuo had been released early from prison repeatedly because of his hemophilia, adding that Kuo had, for example, entered prison in late 2002 and been released for medical treatment on March 2003. Shaw said that Kuo’s condition required treatment amounting to NT$60,000 (US$1,800) per week, which the prisons could not afford.

The Chinese-language Liberty Times (the Taipei Times’ sister newspaper) yesterday reported that Kuo had confessed in an interview to taking the place of a number of criminals at trial and in prison. Kuo told the reporter that his criminal record listed about 90 crimes, of which about 70 were committed by other people. He said that he had received NT$300,000 from each offender to take the consequences for their crimes and had once received NT$12 million from a drug smuggler. Kuo said that since he had gotten away with the scam so many times, many gangsters had approached him for his service.

Gives new meaning to the term Dangerous Doses, which incidentally is also the title of a book, about crooks, about hemophilia and about factor. What an ingenious scam. If justice is served, he will end up in prison, with or without his factor. If you like true crime drama, especially about hemophilia, read Dangerous Doses by Katherine Eban (www.dangerousdoses.com). And let’s hope there isn’t a sequel with Mr. Kuo.

SCHIP Restrictions, Record Number of Americans Uninsured

Laurie Kelley September 17, 2007

NHF has sent an important email appeal to all its constituents, which includes anyone with a child with a chronic disorder like hemophilia. In a nutshell, the Bush Administration is trying to prohibit an expansion of the SCHIP, which it feels would encourage families to abandon private insurance in favor of state/federal funded insurance. NHF disagrees with this assessment and is asking constituents to consider emailing the White House directly to oppose a veto. Here’s the gist of NHF’s email:

“Bush Administration Blocks Expanded Healthcare Coverage for Children: Take Action Now
Prior to going into month-long recesses, both the House and Senate approved bills reauthorizing the State Children’s Health Insurance Program (SCHIP), and allowing more states to expand eligibility for the program to more children in families above the federal poverty level.  However, the Bush Administration, through the federal Center for Medicaid and State Operations, has instituted new policies that would severely restrict the ability of states to expand the SCHIP program, covering more children. In addition, these new restrictions may threaten the existing coverage that children in many states are already receiving. NHF has drafted a sample letter to President Bush expressing disagreement with this action and asking him to rescind it. You can help make a difference by personalizing the letter below with your own story and sending it to President Bush today.

Click here to view and personalize the letter, and send it to President Bush now.”
http://gomembers-ecommunicator.com/campaign/ProtectSCHIP

When I read this, I found this to be the most disturbing part of the news (taken from NHF’s website): “Ironically, the Congressional Budget Office reported that President Bush’s budget did not include enough funding for the SCHIP program to cover the children who are enrolled now. Therefore, it will not be able to cover those who are eligible but not yet enrolled, and/or those who might be eligible under an expanded program.” Ouch; I know personally a lot of families with hemophilia out there truly struggling.

But I encourage readers to investigate what’s up behind the headlines. For instance, I just read in the news wires today that 2 million more Americans are going without health insurance to bring the total to 47 million Americans without health insurance (making it seem even more perilous). Along with the news about SCHIP, this seems outrageous. But after digging a little, I read that these numbers may be misleading. The 47 million also includes illegal aliens and the temporarily unemployed. And yet, if you think about it, the current housing crisis will no doubt affect the wealth and employment of many, leaving more Americans than ever dependent on the government for health coverage. So, it’s not a great time to cut health care budgets, even though we’ve been saying to prepare for this for some time.

But don’t just jump on the bandwagon and fire off a message to the White House without doing your homework. Read the text of the issue, and know what the argument is about. See if you agree with it. NHF has put an explanation of what the issue is on its web site and you can check through the internet. (www.hemophilia.org) And if you are a family facing insurance difficulties, please call NHF (800-42-HANDI), or even call us and we can help direct you to someone who can help.

Why Africa Needs Us

Laurie Kelley September 10, 2007

I am planning my next big trip for hemophilia humanitarian work now: Africa. In December I hope to visit Zimbabwe, Kenya and Ghana. I’ve been to Zimbabwe twice before, and Kenya once before. Ghana will be new to me: we started a hemophilia society there last year and I hope to see how it is developing and what help we can offer.

Zimbabwe, as you may know from reading the news, is in dire straits. My program Project SHARE could quite possibly be about the only organization providing factor. As I know many patients there personally, I am anxious to return. It may seem like a hopeless case to the world, but when you know people personally, nothing can seem hopeless.

I’ve been wanting to return to Africa since 2001, when I was last there. When I received the email below from my contacts there, I knew it was time to go again. To lose a child when it might have been prevented… it’s a driving incentive to try to solve problems, engage the families, and prevent more loss. This child, Joseph, could have been one of our own sons; but he was born in a country where factor is difficult to procure. He was born just before my last visit, and now is gone, so soon, so suddenly. Read about his case:

Joseph Junior Nyang’wara was born on May 18, 2001 to Ben Onundu and Maureen Miruka. He was their only child. “Jose” was diagnosed with hemophilia A, when he was about age one. This condition saw him in and out of hospital on several occasions where he would get replacement clotting factor to stop bleeding. Joseph also had enlarged adenoids that would give him breathing and sleeping problems.

On the April 11, 2007, Joseph had a bleed that led to admission at the Kenyatta National Hospital. He was treated for the bleed and scheduled for surgery to remove his adenoids and tonsils on the 16th April 2007. The surgery, though complicated, was successful and Joseph was discharged from hospital on the April 21, just in time for his child dedication in church on Sunday, April 22. However, on the morning of the 23rd, Joseph developed a bad cough that caused him to bleed. He was taken to the hospital where he was infused with factor. On that same day by afternoon, the bleeding had not stopped. He was taken to MP Shah Hospital and admitted to the ICU to manage the bleeding. It did not stop and it was found that he had developed inhibitors to the clotting factor. The bleeding continued till Wednesday morning, April 25, 2007 when it stopped and there was hope that he had pulled through the worst. But at 2 pm his blood pressure dropped suddenly and he had a cardiac arrest at around 3pm.

The text from his eulogy reads, “Joseph was a very friendly child to both adults and children. He was very prayerful and obedient. He was exceptionally intelligent and as his aunt once said, was a man trapped in a five year old body. Fare thee well, Jose, our guardian angel. Be happy as always and play about in Heaven without any limitation this time. We loved you very much but God loves you more.”

His mother, Maureen, wrote to me in June and said, “I will wait eagerly for you to come and I have made it my resolve to continue to serve others, for Joseph did not go in vain. I therefore look forward to working with you on this front.” Maureen is an inspiration, and potential leader for the Kenya community. If you’d like to help Maureen, and assist in our efforts on Africa, email me. For all the boys like Jose still living, still suffering, there is much we can do.

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