March 2008

Switching Time

Insurance challenges was the topic of my talk in Pleasanton, California at a Herndon Pharmacy sponsored event Saturday evening. We had a great turn out with about 50+ patients and parents attending. We all enjoyed a delicious dinner at the Pleasanton Hilton, followed by my presentation on “The Current Storm.” The hour-long presentation covers what’s happening with hemophilia reimbursement, why it’s happening, how it all got started, and what families shoudl do to protect their insurance and choice. California is facing two major challenges: sudden switching of homecare companies by insurance companies, and a 10% reduction across the board on reimbursement by MediCal. Both measures hurt factor providers (340Bs and homecare) and parents are not very happy with the home care switching. For many parents, they don’t even know what questions to ask. Insurance is complex, ever changing… and necessary.

It was really great to meet some new parents like Christina and Colleen, patients like Art and Stanley, and families I’ve known for a long time, like Vicky and Burt, and Betty. All the attendees really enjoyed meeting each other: everyone knew somebody and it was like a big reunion. You could see the comraderie and joy everyone was feeling. Before everyone left we all sang happy birthday to Mark Helm, president of Herndon, who just had his 50th birthday.

Thanks to Zuiho Taniguchi of Herndon Pharmacy for inviting me and handling all the logistics, and to Mark Helm, for sponsoring this enjoyable event. And please see for more information on Herndon Pharmacy, a contributor of factor to Project SHARE for patients in the developing world, and provider of hemophilia services in the US.

(Photos: 1) Colleen, Laurie, Christina 2) Brochure 

Book I Just Read

Enough About You, Let’s Talk About Me: How to Recognize and Manage the Narcissists in Your Life
Les Carter

We all know people who love to talk about themselves. And we all know bores. But these are not necessarily people with bona fide narcissistic personality disorder (NPD). Carter explains very simply and easily what sets these people apart from people who just love talking about themselves. People with NPD can make your life miserable especially if you are married to them, have one as a sibling or parent, or as a boss. They lack the ability to be empathic and are notoriously difficult if not impossible to get into therapy or even get to see your side of a situation. Being with them is positively exhausting and narcissists are great at making you feel guilty and responsible for all that is wrong in a relationship. Carter offers excellent scenarios and great tips for dealing with those with NPD. Carter has a fundamentalist Christian background, and I did not like or agree with his view of children, despite that he is a popular author and therapist, and you may not agree with his linking original sin to this disorder. I also found the book very light, mostly anecdotal, with dialogues from his sessions with patients. This is a good book if you are new to psychology or narcissism. Two out of 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.

The Most Famous Celebrity with Hemophilia

I have my friend and colleague Richard Atwood of North Carolina to thank for this entry, and my editor Sara Evangelos for editing this. I enjoyed it so much I had to use it tonight. This is taken from Richard’s review of two books, listed below, and it will also appear in PEN in May. I wonder how many in our community knew of this?

The lives of Elizabeth Taylor and Richard Burton intersected with volatile chemistry, and a small part of that mixture involved hemophilia. Yet the role of hemophilia in their celebrity relationship is difficult to uncover, and was possibly meant to remain hidden from the public.

Elizabeth Rosemond Taylor was born in 1932 in London, England, and Richard Burton (Richard Walker Jenkins) in 1925 in Pontrhydyfen, Wales. They both began acting careers, and their personal relationship developed while filming the movie Cleopatra in 1962; the love affair between Antony and Cleopatra seemed to transpose into the torrid affair and two stormy, highly public marriages of Richard and Elizabeth.

In Elizabeth, it’s revealed that in May 1964, Richard was upset after being booed as the lead in Hamlet on Broadway. He began drinking heavily and then argued with Elizabeth, who was watching a Peter Sellers movie on television. During their argument, Richard kicked the television screen with his bare foot and cut a toe to the bone. The blood flow wouldn’t stop for an hour. At the hospital, Richard received a dozen stitches. There, Elizabeth discovered that Richard suffered from mild hemophilia, a condition he had known about since childhood, as four of the Jenkins brothers had “the disease of kings.”

As a precaution, Richard began using an electric razor to avoid nicks while shaving, and Elizabeth ensured that a supply of vitamin K was available for his hemophilia. When Elizabeth learned that there were “more than a hundred thousand sufferers in the United States alone,” she and Richard contacted the National Hemophilia Foundation for ways to raise funds for public awareness. In June 1964 the couple established the Richard Burton Haemophilia Fund, with Elizabeth as chair. For raising hundreds of thousands of dollars, the fund was recognized in the June 17, 1964, issue of the United States House of Representatives Congressional Record, and in the June 27, 1964, issue of the British Medical Journal.1

Richard Burton: A Life is a an in-depth biography, and yet hemophilia is mentioned only once and the Richard Burton Haemophilia Fund is not mentioned at all. Elizabeth contains a short section titled “Richard’s Hemophilia.” The index includes two listings for hemophilia, under “Charities and Causes” and Richard Burton; but there is no listing for the Richard Burton Haemophilia Fund, although NHF is listed.

Richard Burton had more pressing medical problems than his hemophilia. Drinking and smoking adversely affected his liver and lungs, and he also suffered from epilepsy and acne. He blamed his arthritis on neck and back injuries from playing rugby as a youth, and on the “weak Jenkins bones.” Richard’s hemophilia didn’t prevent him from fighting, and was only mentioned in the book because of the 1964 bleeding incident. For some reason, perhaps the for fear of being stigmatized, the role of hemophilia in Richard Burton’s life never reached center stage.

Richard Burton: A Life
Melvyn Bragg, 1988. New York, NY: Warner Books. 643 pages.

Randy Taraborrelli, 2006. New York, NY: Warner Books. 671 pages.

Brainstorming in Naples

I spent this weekend in beautiful Naples, Florida, attending a Bayer Multidisciplinary Board meeting. This is a fascinating chance to brainstorm on concerns within the community with some talented and diverse people, to discuss current insurance trends, and hear about new ideas on treatment coming from a manufacturer.

One the most interesting segments was listening to Dr. Glenn Pierce, VP Clinical Studies at Bayer, and former NHF president, share progress on Bayer’s longer lasting formulation for Kogenate FS. While we wait for a cure, which could take years, longer lasting factor could be the next great thing for our treatment. Imagine prophylaxis that only requires one shot a week, but is as effective as three shots a week.

As always, I am humbled by how fortunate we are to have in our community so many dedicated to our welfare, and who joined us this weekend, such as Dr. Craig Kessler, currently chair of MASAC, Dr. Prasad Mathew, Regina Butler, RN, and Mike Rosenthal, formerly of the Hemophilia Association (Arizona). And as consumers we are grateful to be included in these round table, informal gatherings. This weekend I was able to see my buddy Rich Pezzillo, friend Kyle Callahan (former president of HHS), and fellow mother Shari Bender, whose husband Steve sits on the NHF board.

While I cannot share the topics we discussed, I can say that these opportunities are golden to learn and to give feedback. If anyone is offered the chance to serve on any manufacturer, HTC or home care advisory board, I strongly encourage them to participate. Thanks to Bayer for providing us all this wonderful opportunity to serve! (Photos: Rich Pezzillo and Mike Rosenthal; Craig Kessler with Shari Bender and Laurie Kelley)

Great Book I Just Read: The Truth About the Drug Companies by Dr. Marcia Angell. You may think this is a strange juxtaposition, after I just attended a drug company sponsored meeting, but I am researching an article on marketing by the pharmaceutical companies. Angell, former editor of the prestigious New England Journal of Medicine, has an axe to grind for sure, but reports on the behind the scenes maneuvers by “big pharma” as it attempts to weild influence over both consumers and law makers. While this is mostly about pharmaceuticals (pills) and not biologics (typically injectibles, like factor) it nonetheless will open your eyes and make you more critical when you order or purchase any pharmaceutical product– and critical when you meet with your physician. Angell describes practices such as how the drug companies influence physicians to prescribe their products through gifts, junkets and marketing programs. Most interesting is her claim that the cost of marketing is much greater than the cost of R&D. It’s well known that the drug industry is America’s most profitable, and she discusses some of the reasons why this is so, and perhaps why it should not be so. Not totally applicable to the factor industry, but it is excellent food for thought. Three/four stars.

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