Rich Pezzillo

Brainstorming in Naples

Laurie Kelley March 10, 2008


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.

Dr. Craig Kessler, Shari Bender, Laurie Kelley
Cheers!! Rich Pezzillo and Mike Rosenthal

The Power of Alternative Medicine

Laurie Kelley February 18, 2008


On Saturday I drove down to Rhode Island to visit my friend Rich Pezzillo. Rich is a 24-year-old with hemophilia and inhibitors. One of the toughest cases I have ever seen. He’s had quite a year this past one. I wrote about him in my blog December 2006, when I visited him in the hospital. He was in excruciating pain then. It was very hard to be with him for three hours, because he was in constant, deep pain, apparently from his sciatic nerve. He is only a bit older than my son, so it was hard as a mother to see someone so sweet hurting and not be able to help. And Rich really is sweet, a great guy.

And so is his dad, Richard. I spent four hours interviewing Rich Jr. for my book on inhibitors and came away for a whole new appreciation of parents. Richard is a mechanic and small business owner, and father of three wonderful sons. Two have hemophilia, Anthony and Rich. But only Rich has inhibitors. What they’ve been through could fill a book. But I marveled at the father, and how devoted he is to his sons. Rich told me of the time when he was hospitalized in Vermont while at college, and his dad drove up from Rhode Island every other day to visit him. That’s a long ride, and a huge commitment when you own a business.

And when the doctors in Rhode Island informed Richard that his son would never walk, he refused to accept it. He was told the inhibitor bleeds had done too much damage to Rich’s nerves. Rich would always be wheelchair-bound. Through sheer desperation, Richard found a way, oddly enough, through karate. Anthony, despite having hemophilia, is a karate master. When he injured his shoulder, he was told by his fellow karate teammates to try a renowned acupuncturist in Haverhill, Massachusetts, about 15 minutes from where I live. When the visit cured Anthony’s injured shoulder, Richard convinced Rich, who put up a fight, to see him. They have gone weekly over the past year.

Now, I’ve seen Rich many times, at NHF meetings and at advisory board meetings we are both on: he is always in pain, and almost always in a wheelchair. On Saturday I had a shock. When I saw him, he was standing completely erect, relaxed, with no wheelchair in sight! I first thought “He’s so tall! When did he grow?” I never saw him at his full height! I was delighted. We chatted for four hours, with no interruptions of pain, as in the past. Richard is convinced it was the acupuncturist, who told him that all the wheelchair time had compressed a nerve. The nerve, overstimulated, didn’t know how to stop sending pain signals. With treatment, the nerve stopped, and Rich is much better.

It’s an amazing testament to the power of alternative medicines. I think I am going to check out this guy for my right shoulder. Too much scratch-pad movements while writing this book. And look for Rich at more hemophilia events. If he had high attendance while in dire pain, you can imagine how much he’ll get around now! Indeed, he said aloud how he couldn’t wait to go to Istanbul for the WFH meeting in May, after which we heard a shriek from his mother in the kitchen. Apparently he hadn’t told her!

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