Three years in the making, and it’s finally here–Managing Your Child’s Inhibitor, the world’s first book on inhibitors. At 279 pages, this is a comprehensive look at everything parents and patients need to know about so many aspects of inhibitors. From ITI to pain management, from insurance to attending school, this book weaves together advice from over 40 families with hemophilia, and includes the latest research and knowledge to give you a guidebook through every stage of inhibitor management.
The book is authored by me and my friend and colleague Paul Clement, who also has a son with hemophilia. The idea for the book was born during the Novo Nordisk Consumer Council meeting of 2005, after I heard the anguish, the suffering and saw the tears of so may families with inhibitors. I couldn’t believe what I was hearing. It was as though inhibitors were a separate disorder. I didn’t know people with hemophilia still suffered like that in the US.
As you may know, an inhibitor is an antibody the blood makes, directed against factor VIII or IX. The body doesn’t recognize the infused factor as belonging to the body–it sees it as a foreign invader and mounts an attack. The body produces antibodies which latch on and neutralize the infused factor. It renders it useless, and the blood continues to bleed. Very scary.
I learned so much creating this book: about pain management, different protocols, and the different products. But most of all, the incredible strength of people with inhibitors and their families. They are truly heroic people. I hope the book is a testament to their courage, and also helps give guidance to families new to inhibitors, so they can learn from their peers, and find the best route to elimination or at least management of the inhibitor.
My thanks to Novo Nordisk, which gave us an unrestricted grant to research write and publish this book. Novo Nordisk is the manufacturer of NovoSeven® RT, a bypassing agent used in the treatment of acute bleeds in patients with hemophilia and inhibitors.
You can order the inhibitor book via our website at https://www.kelleycom.com/books.html
I just returned from Miami, where I attended the first 2009 Consumer Advisory Council with Novo Nordisk. This is our fourth year, and it just keeps getting better! I spent all day Thursday, from 8 am till 4 pm, with about 12 inhibitor patients and family members, along with representatives from Novo Nordisk. The Consumer Advisory Council covers topics of direct interest to inhibitor patients and family members, and offers them a chance to give feedback directly to Novo Nordisk. The Council meetings allow Novo Nordisk to share product and treatment information, solicit suggestions and brainstorm together on meeting the needs of the inhibitor community.
It’s vital for consumers to have a direct line to the manufacturers; in this way they are able to express their concerns, needs and hopes. And it’s more than just lip-service. What has been presented in the past through the Consumer Council has become a reality in some programs and educational brochures for patients.
For instance, the Uninhibited Achievement Awards (UAA) were created through the Consumer Council and honor individuals in the inhibitor community. In addition to an award, a donation is made to the winner’s favorite charity.
So, we are looking for a few good inhibitor patients!
By August we want to nominate a patient with an inhibitor who meets the criteria of the UAA awards. Know someone with an inhibitor who is courageous, hard working, and achievement-oriented despite so many medical obstacles? Go to http://www.changingpossibilities-us.com/changing/index.asp and fill out an application! It’s easy, and will be well deserved.
Also, in 2010 we will need new members for the Consumer Advisory Council. If you know someone who might be interested in participating, contact and let us know. Council members must be a person with an active inhibitor or their caretaker (parent). It’s a chance to travel, work as a team, consult with a pharmaceutical company, and get your voice heard.
Good Book I Just Read The Greatest Salesman in the World by Og Mandino
This little gem is considered a classic in the field of motivation and business. First published in 1964, it may read a little dated but its principles are timeless. The entire book is a parable, and the business principles of selling are presented as ancient, secret scrolls. Hafid is a wealthy, elderly man, living in Damascus, Syria, at the time of Christ. He is known as the greatest salesman in the world. As he nears death, he decides to liquidate everything he owns–millions. He has Erasmus, his faithful servant, sell off everything except for some money to see him through to his death. But he shares with him a secret, which he says is worth more than the jewels, money, millions he has made. Ancient scrolls, passed on to him from the previous greatest salesman, have been waiting to be revealed to the next greatest salesman. Hafid shares the scrolls with Erasmus, warning him they must give these ancient scrolls only to someone exceptional, someone seeking to be the greatest salesman in the world, even if he did not at first know it. How would they know who it is? Some sign would alert them.
At only 100 pages, this little book can be read in a few hours, and is packed with wisdom (even though I found the writing to be a bit stilted and inconsistent, as Mandino tries to write in a “verily” and “this is howeth they used to speaketh” kind of way). The book has distinct Christian overtones, which may be off-putting to non-Christians. The wisdom in the scrolls, and how Mandino (or Hafiz) says to use them, is excellent, and I can attest, as do so many others, they do work. Three stars.
The very successful Inhibitor Summit meeting took place this past week and weekend in Denver, Colorado. Over 80 families from all over the US attended to learn about inhibitors, current research, and treatment and insurance information. If you’ve never been with a group of inhibitor patients, you’d be amazed at their level of knowledge and expertise. I guess they have to learn fast, given the nature of the disorder, which is a severe complication of hemophilia.
I arrived a day early to help facilitate the Novo Nordisk Consumer Council, which is comprised of patients with inhibitors and parents of children with inhibitors. It’s a wonderful chance for the patient community to give direct feedback to Novo Nordisk, and to learn in detail about the company’s philosophy, products and ideas. The Council actually helps to shape some of the educational material coming from Novo Nordisk. Working from 8 am to 4 pm, with only a ten-minute break, we really accomplished a lot and learned a lot!
The Summits just keep getting better and better. Dr. Guy Young from Children’s Hospital, Los Angeles, moderated the panel speakers and also gave an excellent overview on inhibitors. He focused on differences between FEIBA and NovoSeven, the two main treatment options for inhibitor bleeds, their efficacy and safety, dosing regimens. Most exciting were the slides showing how effective it is to use these products prophylactically to prevent bleeds. Dr. Steven Pipe gave a very insightful yet understandable presentation on the future of inhibitors: what’s being worked on now around the world–very exciting things. I’m saving what I learned to publish in PEN soon.
I attended a few other sessions: Regina Butler, RN of Philadelphia, and Angela Forsythe, PT, teamed up to give a dynamite presentation on joint disease. This is especially important for those with inhibitors due to the excessive bleeding they face. Angela stressed the important role physical therapy and exercise play in rehabilitating joints. Stopping the bleeds is not the only thing we have to worry about; we need to ensure the joints are cared for to help prevent future bleeds, and future deterioration. Excellent presentation.
There were other talks on pain management, prophylaxis, and central venous access devices. Again, CVADs are very important to inhibitor patients because when they have Immune Tolerance Therapy, they are being infused daily, sometimes for months! Vein access is extremely important.
I was honored to give a presentation along with Glenn Mones, VP Advocacy for the National Hemophilia Association, and Val Bias, colleague, friend and new CEO of NHF. We spoke about the changing insurance scene, what’s causing the changes, how we can advocate to slow down change and ensure we get the insurance coverage we need for these high cost, but life-saving products. (You should know that NHF is working hard to get a bill introduced to raise life-time maximums; go to www.hemophilia.org to learn more. They need your help!)
Novo Nordisk provided a grant to support the Summit, and it was great to see so many families returning from previous Summits. The event was planned and carried out by the amazing staff at CBCE. Thanks to everyone for making this event successful, useful and possible. If you have inhibitors, come to a Summit! The next one is in October in Birmingham, Alabama. If you know of someone with inhibitors, encourage them to register. The trip is free, and the knowledge gained is priceless.
(Photos: Rich Pezzillo and Sasha Cheatham; Dr. Manco-Johnson with the Wilkes family; Glenn Mones of NHF gives presentation; Kari Atkinson of Iowa and Laurie; Val D. Bias)
Great Book I Just Read:Miracle in the Andes by Nano Parrado I had already read the book Alive by Piers Paul Read, and seen the movie, but they pale in comparison to this account, published 35 years later, in 2007, by the young man who actually walked out of the Andes, after 72 days in the most horrific conditions you can imagine. I could not put this book down. In 1972, a chartered plane crashed in the Andes, with a rugby team from Uruguay, which had been en route to Chile. The players were just boys, aged 17-21 mostly. How they survived and how they escaped is one of the greatest survival stories of all time. But this is a story of leadership, primarily, teamwork, and faith. After you read this, you might believe anything is possible. An enthusiastic four stars!
Inhibitor families are a special lot and my admiration for them just continues to grow. For the past six months I’ve been interviewing parents and patients for my new book on inhibitors and I have learned what amazing hardships they face, and with such courage. Though I helped facilitate the Novo Nordisk Consumer Council for the past two years, I still didn’t have a full appreciation of their lives. This past week in New York City we inaugurated a new group of parents and patients for the Consumer Council, and I feel better able to represent their needs by knowing more about the medical care, parenting concerns and social issues they face.
We had a wonderful time on Friday. Meeting at the Westin Hotel Times Square for a full day, the marketing team at Novo Nordisk and I presented questions and listened to nine consumers share their experiences, thoughts, suggestions and concerns. None of them had ever met one another, as inhibitor patients are pretty rare and in a country as big as the US, it is hard for them to meet. The Novo Nordisk Inhibitor Summits brought inhibitor patients together for the first time two years ago, and yes–for all who are reading this–there are going to be two more this year.
We had breakout groups, exercises and ice breakers. One ice breaker–meant to help us get to know one another–asked each participant to identify themselves with an animal. Everyone chose different animals, from a kangaroo to a dog to a lion. But Schlander chose an ant–unusual because almost no one in these types of exercises ever chooses an insect. Why an ant? Because though small, they are strong in groups and can accomplish something that seems impossible, given their size. Given that this group will be together for two years, it was a perfect animal to choose to highlight what a small team of dedicated people might and will accomplish.
Great Book I Just Read:Blood: An Epic History of Blood and Commerce, by Douglas Starr. Four stars! This book took me a while but it was well worth it. Fantastic overview of the history of blood. It starts with the story of a madman running naked through the streets of Paris… reads like a novel but is packed with information about the meaning of blood in society, medicine and business. Learn about its incredible importance during World War II, and how much we advanced our knowledge of blood because of the war. Fully half of the book is devoted to the hemophilia holocaust, and I read with sadness and pride about our community, and its fight to bring safer measures of blood treatment and justice to the victims. It was startling and impressive to read about the leadership and courage of people like Bruce Evatt of the CDC, and Corey Dubin and Dana Kuhn of COTT, true heroes in our midst even today. I had read the history of the HIV infection before, and even watched the HBO movie about it, and still see Corey and Dana at events. But.. time goes on, and being human, we all tend to forget the past. This book reminded me of how privileged we are to have these warriors; how lucky my son and anyone born after 1985 are because they benefited from their perseverance to get a settlement from the government and drug companies, and have safer measures. And they still persevere in protecting our blood supply even today. Blood is required reading for anyone involved in the hemophilia community on any level.
I was in Chicago on Thursday and Friday to facilitate the Novo Nordisk Consumer Council meeting; this is the third such meeting which brings together parents and patients who are also opinion leaders for a day of analysis and brainstorming to determine better ways to educate and empower inhibitor families. Novo Nordisk flew our council members in from Ohio, California, South Carolina, Rhode Island and Pennsylvania, and despite stormy weather, which delayed many flights, most members were able to gather for an elegant dinner at Nick’s Fish Market to get reacquainted.
The next day was productive and stimulating. After breakfast we dove into our agenda, discussing inhibitor patients’ needs and ways to address them. Council members brought in sample educational materials for other chronic disorders, which we analyzed for their usefulness by rating content, layout and user-friendliness. We had a discussion after lunch about the business structure of the hemophilia market and how products are valued. Insurance played a large role in all we discussed.
The Consumer Council was designed to be a forum for inhibitor patients to vocalize they concerns directly to a manufacturer, and provide feedback to a manufacturer on its own marketing materials and efforts to educate. It also allows a manufacturer to directly educate consumers, who will in turn educate consumers back from where they come. It is a great two-way interaction that benefits everyone. I was very sorry to leave my good friends Friday afternoon, many of whom remained for the Novo Nordisk Inhibitor Summit meeting on Saturday. Me? I chose to be in Boston for my daughter’s 16th birthday. In all the years I have worked with the hemophilia community (17 now) and in all my travels, I have not yet missed any of my three children’s birthdays.
On the plane ride home, no celebrity sighting but something just as amazing. Sitting next to me was a 30-year-old man, who looked remarkably like a 20-year-old college student. Brett was charming, talkative, and full of ideas and life. He owns an entertainment consulting company, and teaches teambuilding, goal setting and leadership, topics near to my heart. He simply exuded energy, enthusiasm and zest for life. When he asked what I do, he listened with much interest. When I finished he told me he knew a guy with hemophilia. I felt it coming–most likely I know him, too! Sure enough, it was Ali B., my son’s counselor from Paul Newman’s Camp Hole in the Wall Gang in Connecticut! Is that strange, or what? Yes and no; things like this happen a lot, the more I travel and chat with fellow passengers. Brett and I met as strangers and parted as friends, vowing to share our entrepreneurial experiences in the future and stay in touch. I didn’t get home till 2:30 am, but appreciated a happily surprising end to a great trip!