Blog Archive

Sunday, September 30, 2007

The Book is Back!



After a three year absence, "Raising a Child with Hemophilia," edition 4, will soon be available to order. This newest version is even more consumer-friendly than the previous three versions, with charts, illustrations, tables, and two-color throughout. Thanks to your feedback, we're including an index, so you can easily find the information you need by topic. And we've updated the quotations and stories by families, to include more recent ones with more relevant information. The insurnace chapter became so daunting, with all that is happening to reimbursement, I divided it in two to make it more easily digested.

As always, this book is free of charge to parents of children with hemophilia and patients with hemophilia, HTCs, and hemophilia nonprofits. We are grateful to CSL Behring for the funding for this book. You can visit the section of our website to place orders, and to reserve your copy today! We will have the book ready by November 1, and debut it at NHF's 59th Annual Meeting in Orlando. I'll be signing books Thursday evening, November 1 and hope to see you there!

Sunday, September 23, 2007

And Now For Something Completely Different...

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.

Sunday, September 16, 2007

SCHIP Restrictions, Record Number of Americans Uninsured

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.

Sunday, September 09, 2007

Why Africa Needs Us

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 pesonally, 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. Joseph 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, call me at 978-352-7657. For all the boys like Joseph still living, still suffering, there is much we can do.

Sunday, September 02, 2007

Risky Business at 13,000 Feet

(Photo: Tommy, Laurie and Kevin at Skydive New England, harnessed to jump)

So Tommy and I had a unique mother-son experience this past week. We jumped out of an airplane together at 13,000 feet. (I always threatened I was going to toss him out of a plane someday.) This fulfilled a promise I made to each of my three kids-- that I would take them skydiving, a passion of mine, after their 18th birthday. This was my third skydive and his first. And this was my gift to him on the eve of his 20th birthday. What a fantastic way to inaugurate adulthood!

He was excited, and nervous. With us was my 22-year-old nephew Kevin, a police academy cadet, who seemed as jazzed as Tommy. It may seem funny to you that it's an almost 50-year-old mother initiating this for her son. One spectator, a woman about my age who was watching as her 19-year-old daughter prepared to jump, said to Tommy, "You've got a cool mom!" Hearing that that was worth any risk in jumping, especially as Tara reminds me often how uncool I am. Who doesn't want to be cool?

But I personally don't think of skydiving as very risky. Most people do. My life insurance company certainly does. I think of it more as exciting, a way to overcome one's personal fear. I was never afraid of heights, but actually jumping out the side of an airplane and hurtling to earth--9,000 feet in 55 seconds of freefalling-- did give me butterflies. But I savor the adrenaline rush, and adore the idea of conquering fear. And I go tandem--strapped to my back is an instructor with 28 years of skydiving experience (including many years with the Italian Army) and thousands of jumps under his parachute. I was in good hands.(Photo: Tommy plummeting at 120 mph)

And I know Tommy would love it. I was hoping he'd feel that he'd overcome some measure of internal fear, and feel proud of himself. While I've always encouraged him to take some risks in life, and not feel overprotected or fragile, especially from hemophilia, Tommy has always been a cautious child by nature. And he's an only boy; he didn't have a big brother egging him on, daring him, showing him the way.

I had six brothers growing up, and as the only girl, and a petite runt at that, I had to always compete with the boys. With all those active, competitive brothers, there was no way I could not love risk. You had to: to fit in, to belong, to earn the admiration of your playmates, you had to do what the boys did. And they did a lot: waterskiing, snow skiing, motorcycle riding, rifle shooting, fishing, tree climbing, racing. We had land, lots of boys, a tree fort... my family attracted all the neighborhood boys in the 1960s, until we had our own tribe--with me as an honorary member, I guess. If there was a challenge in front of you, you took it. If you were dared, you did it. And not only to fit in, but to measure your ability, to see what you could overcome internally. To grow. Pain? Forget it. A few cuts, scrapes and scabs were badges of honor; to suffer in silence was one of the best ways to gain respect.

But times change, and it seems boys today don't get the same opportunities we had growing up, especially only boys. Especially boys with hemophilia. We have to seek out adventure now. Earlier this summer Kevin and I took the kids white-water rafting, during a scheduled dam release, no less. Great fun, hours on the river, teamwork as a family-- we always enjoy that adventure. So I upped it a notch for Tommy by giving him a skydiving certificate. He said yes!

Well, there was one truly risky part to this whole thing (besides the jumping out of a plane bit). He didn't infuse before skydiving (Yikes, I can hear all the hematologists grinding their teeth now). Caught up in the excitement, the factor was left behind. Tommy has moderate hemophilia and does not infuse that much anymore, and never infused prophylatically, except for major events (which this should have qualified as!). This was a reschehduled jump, his cousin had driven two hours for the second time in two weeks to do the jump, and school started the following week--no hope of skydiving after this day. We had to make a decision. Calculating the risk, we decided it was actually very low. There was very little chance of injury when you go tandem. Still, in the back of my mind, I wished he had infused. But part of growing into adulthood is making your own decisions. I respected his. And he did fine. We boarded the prop plane after gearing up. The plane is stripped down and you sit on benches inside, nothing remotely like commercial flying. The ride is loud, the engines roaring, and the anticipation builds. At each thousand feet climb, you get strapped in closer and closer to your instructor, and you can feel adrenaline surging through you! Then the people ahead of you stand at the bay door, which opens, and within seconds whoosh! They are swept away. They seem to plummet like rocks to earth, but when it's your turn... you feel as though you are floating underwater. You lose all sense of speed. It's basically indescribable. After 55 seconds, the chute streams out and with a quick jerk, everything becomes eerily quiet, and you sail around, admiring the flawlessly blue sky, the fluffy little trees 2,000 feet below, and the miracle of flight.

When your feet hit the ground, first-timers predictably say the same thing (everyone did who was a first-timer that day): "That was incredible! I loved it! It was too short! I want to go right now again!" Tommy grinned from ear to ear. He and Kevin chatted nonstop about it, every aspect of it. And made plans to go again! (Photo: Hugs for my nephew)

There's a great new book out called "The Dangerous Book for Boys," detailing all the fun and risky things boys should know and do before they transition to adulthood: how to camp, how to build a fire, how to build a tree house, how to fish, make knots, skim stones, how to build go-carts, and fly paper airplanes. Things we did normally, naturally. This book is like a walk down Memory Lane of a wonderful childhood populated with curious and active boys. We did all those things; boys should do those things. And boys need to do those things. They need to take risks, push themselves, compete, overcome their fears. More so if the boy has a disorder like hemophilia. The trick is to find activities with an acceptable level of risk. Skydiving is one of them for me, and now for Tommy. Preferably next year, he'll infuse first. Risk is great but it should be weighed, and I don't like tempting fate too often.

I like skydiving, rock climbing, traveling to exotic developing countries. People sometimes ask: what activity do I feel is personally risky?

Cooking. Just ask my kids. No wonder they aren't afraid to skydive.
 
Bayer