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A Bittersweet Celebration

Laurie Kelley October 10, 2011


I had the great privilege to attend a private event that was to have been a fundraiser for friend and US Senate candidate Bob Massie, of Journey fame. For you hemophilia young-ones reading this, Journey was I think the very first book on hemophilia ever written. Certainly the first written by parents of a child with hemophilia. The book details life for one family in the 1950s and 60s, who later became famous as parents Robert and Suzanne authored and published the classic Nicholas and Alexandria.

But back to the event. The entertainment for the evening was the humble, humorous and infinitely talented Noel Paul Stookey of the incredible group Peter, Paul and Mary, perhaps best known for their song “Puff the Magic Dragon.” I arrived early to the stunning home of Mark and Becky Levin in Boston–the traffic was light and the weather warm. What a great night to hang out in Boston!

Noel was so gracious and unpretentious. He and Bob have been friends for 30 years, since Bob was young. The group became friends of the Massies, and I recall from the book Journey, how Noel would sing to Bob when Bob was trying to survive terrible bleeding episodes. And here they were together again!

We were all very sad to hear that night that Bob would the very next day announce his withdrawal from the US Senate race. He gave it a good fight, and spent countless hours traveling the state, meeting everyday people, and rallying people to hear his thoughts about our country and his plans to represent Massachusetts. As someone who suffered, truly suffered, with hemophilia, then HIV and hepatitis, he really could speak out on issues of chronic healthcare. Bob is incredibly intelligent, down-to-earth, educated and passionate. He has already had an amazingly accomplished life, but still wishes to do more in public service. What a hero he is to us all!


He read his withdrawal speech, which included: “I know how hard people are struggling today. In a hundred speeches I have defended the right of every citizen to a good home, a good school, a good doctor, and a good job. I have also said that despite the difficulties we are facing today, we must not forget our opportunities and responsibilities for tomorrow.” And towards the end, “We all have a role to play in this. This is an extraordinary state filled with extraordinary people and we are capable of extraordinary achievements. I plan to play my part moving forward.”

We sincerely hope this means he will return to public life, for if anyone could represent the needs of those with hemophilia and chronic disorders, it’s Bob Massie.

After his speech, Bob and Noel played a song together; Noel on guitar and Bob on banjo. Guests offered their tributes to Bob and congratulated him on his efforts and praised him for his dedication. All in all, a wonderful evening, filled with gratitude to Bob, pride in our state.

To read Bob Massie’s Speech, please visit www.BobMassie.org

Great Book I Just Read
A Hole in Our Gospel
Richard Stearns

Stearns, the president of World Vision, offers an inspiring call to action to help the world’s poor. He attempts to answer the question, “What does God expect of us?” He does not let fellow Christians off the hook just because they go to church, know the Bible, attend Bible study classes and help their neighbors. He wants them to take part in a social revolution to save the world, specifically, to help those in need in Africa. Stearns shares his startling story about life as a high-rolling, wealthy CEO of Lenox, the provider of luxury china products. When tapped to be the next CEO of World Vision, Sterns had to make a difficult choice: uproot his five children and wife to Seattle, and take an enormous cut in pay and lose all his corporate perks and benefits. After much soul searching, he accepted. He shares what he has experienced in his job, along with his theology of Christianity in action.

It’s a compelling read, and certainly makes you look at your own life, your possession (how much do we truly need in this life anyway? What would we really miss if we gave more to help the poor?) and your beliefs about the poor. It’s not flawless, and some of the reading gets quite heavy-handed. A book review on The Gospel Coalition website says, “The Hole in Our Gospel is also theologically flawed and economically misguided… but its overall charge to care for the poor and put our faith into action is a good and necessary challenge.”

And despite taking a pay cut, Stearns still takes home a healthy $400,000 annual salary; World Vision is also not without criticisms of how the $800 million organization is run in the field. Still, you can’t doubt the author’s sincerity and depth of his calling. I don’t agree with his hero-worship of Bono; and the pages and pages and pages of glowing testimonials in the beginning actually cause the antithesis of purpose—I was very suspicious of any book that must call so much attention to itself. Why not allow the reader just to read and form their own opinion first without biasing them? But I read, and was profoundly moved as I had just returned from Africa, have seen what he has seen, and believe what he believes about social justice and about how we can each do more to help those in poverty. There’s a lot of theological interpretation you can argue, as he quotes and interprets the Bible throughout, but his social message is loud and clear, and he is a man who is walking the talk. He visits the poor; he strives to solve their problems; he does it with love; he makes results. Kudos to him! Three stars.

Biogen Idec Hemophilia’s First Advocacy Advisory Summit

Laurie Kelley October 2, 2011

Every now and then I am reminded how wonderful it is to be a part of the hemophilia community, if you can say such a thing knowing it means your loved one has hemophilia! I spent the day on Friday with a group of dedicated colleagues, some I have known for 18 years, so many I admire. Our hemophilia community is filled with such people, all trying to improve the lives of those with the condition.

So I was honored to be selected to attend Biogen Idec Hemophilia’s first Advocacy Advisory Summit on Friday, in Research Triangle Park, North Carolina. Arriving to much-welcomed balmy weather, I caught up with a cast of great people and friends, including executive directors Lynne Capretto (Ohio), Sue Cowell (N. Carolina), Kevin Sorge (New England), Kelly Waters (Virginia), Merlin Wedepohl (N. Cal), Kristian Prill (Washington), Greg Mermilliod (S. Cal), Vicki Jackson (Alabama), Sean Hubbert (Central Cal), Ken Trader, Joe Kleiber and Michelle Rice of NHF, and Susan Swindle of HFA. And special guests Dolly Shinhat-Ross of WFH and Margo Price of ISTH.

We were invited to “meet” Biogen Idec, learn about their clinical trials, and tour their plant. Jessica Swann, who many in our community know from her days as executive director of Hemophilia Association of San Diego, and then her days at Avigen and Bayer, is now Associate Director, Global Product and Market Development at Biogen Idec Hemophilia. She joins Dr. Glenn Pierce, Senior Vice President and Chief Medical Officer, who was twice president of NHF, formerly of Avigen and Bayer and who also formerly had hemophilia!

You may not recognize the name Biogen Idec: they do not have a commercial hemophilia product currently, but have two in the pipeline, in phase III clinical studies. You may have heard though about “extended half-life factor.” This is one company that is working on this.

When factor is infused into the blood stream to stop a bleed, it has a “half life.” Just as food is broken down and used, and you need to eat again, factor is used to stop bleeding and eventually broken down (degraded) in the blood stream and absorbed back into the body. The half life is how long it takes for 50% (half) of the factor to be used up. The idea behind extended half-life factor is to “catch” the factor when it is absorbed and return it back into the bloodstream before it gets degraded so it can still be used. Its half life then theoretically goes from 12-18 hours (currently normal half lives for factor) to up to 2-3 days or more. This may allow the protective effect of factor VIII and factor IX to last much longer than they currently last.

As a group, we tried to imagine what that would mean for patients: greater quality of life, fewer infusions, less stress and worry, greater protection. Make no mistake: extended half-life factor could be the next great thing in hemophilia.

Biogen is no stranger to me, but it is to our community because they did not continue its recombinant factor VIII program from 1982. It’s smart for any company to get familiar with the community before its product is launched. This company has a leg up as many of the people on its research, medical, clinical and marketing teams are from the community itself.

Still, Jess posed a question to our group of 35: How would you describe Biogen Idec? About 50% chose “Innovative,” while 19% chose “New and unknown player.” Yes, Biogen Idec is researching this new technology and new hemophilia products, but — who are you?

Biogen Idec is very familiar in the world of multiple sclerosis (MS). It has only three commercial products: Rituxan, Avonex (interferon beta), and Tysabri (natalizumab), which collectively had 2010 revenues of $4.7 billion. So it’s not a small company.But they have a big pipeline, with nine programs in Phase III (late stage) clinical studies, including extended half-life factor VIII and IX. Data just presented at ISTH in Japan this past summer looks promising.

After listening in the morning to presentations by Biogen Idec executives about the company, its history, products and mission, we listened to quite compelling testimonials from two MS patients, and a local executive director of an MS society. Some of us were stunned to be on the “other side” of the testimonial telling: usually we are the ones giving the heart-wrenching testimonials. It was stirring and emotional to listen to an articulate mother tell her story of MS, and how the Biogen Idec drug helps her to live a normal life. She also related the patient assistance programs that help each person affected, and how she has counted on this help for 15 years! She most definitely put a face to the company in terms of practical and compassionate care.

After lunch we toured the manufacturing plant. This is always fascinating to me. None of us are scientists, and yet we have some idea of what goes on in making factor. But we get reminded when we tour plants of the years and years of research that goes into preparing for manufacturing, the quality control that must be in place, and above all the cleanliness of the environment. I think this struck us all the most. As Joe Kleiber of NHF commented, the “cleanliness and complexities” of large scale production of factor is astounding.


Steve, our tour guide, stressed how in making such a product, the process needs clean water and clean air. Quality control is paramount: they measure the concentration of microbes in the air; they reduce human contact with the manufacturing process as much as possible (humans carry bacteria, and we were to purify our hands many times on the tour); all reactors have to be sterilized each time a new batch is made. The process needs pure water, to make steam, to clean the pipes and parts. He showed us software that displayed continually how the current manufacturing process was measuring up, using 50 different measures all combined into one measure, compared to historical data. Looking at a line chart on a screen, you could actually see the current production and how it compared over past weeks to a historical line. In this way, you can make adjustments needed to get production back on track. This was fascinating to us!

When we returned, we had many questions and the Biogen Idec team had questions for us. One piece of advice that was sincere and deep was not to overpromise the hemophilia community. New products are fantastic; we hunger for advanced products to help our children live more normal lives. But we have been burned in the past, when hopes were raised that a cure was around the corner.

The message was clear, for all companies: now that patents have expired and the race is on to bring new products to market, don’t build up hopes too high. Fortunately, we have great products now and our loved ones live good lives, especially compared to most other patients globally. We can wait and we want a realistic perspective. Still, there was excitement that a break-through product perhaps is not too far away.

In closing, Jess deftly asked us how we would now describe Biogen Idec? Not too surprisingly, almost everyone changed their original answer and selected, “Committed to the hemophilia community.”

I’d say that was a very successful first hemophilia Advocacy Advisory Summit.

For more info: www.biogenidechemophilia.com

Thanks to Biogen Idec for the tour and time, and thanks to all my colleagues who made for such a great meeting and day.

Good Book I Just Read
The Life You Can Save
Peter Singer

This compassionate and thought-provoking book on humanitarianism is nonetheless by a philosophy professor who once wrote that there is an argument to be made that aborting a fetus known to have hemophilia is not ethically wrong, in his book (which I have not read) ‪Writings on an Ethical Life‬. I am not going there now, but will say this book was good. Singer’s very basic premise is that most of us would not hesitate to help a child drowning in a pool, even if it were inconvenient (missing a bus, ruining our clothes), but we blindly turn from the 27,000 children who die every day from preventable causes in developing countries. He sets his case well, wondering why we do not easily give up buying things we don’t need in order to help others to live. He explores our wariness with charitable organizations, and challenges our rationalizations for not giving. This is a good book, not without its flaws in the argument, but worth reading and a very quick read. Recommended for those who are compassionate, who want to influence others to be more compassionate and giving, and for those in healthcare globally. Three stars.

Show Me the Tats

Laurie Kelley September 25, 2011

I read an interesting article on the newswires, concerning hemophilia and tattoos.

It seems everyone has tattoos. Teens, moms, young, old… they are as commonplace as pierced ears, and more commonplace than piercings elsewhere on the body. I saw a guy yesterday, bald, with a huge one that snaked up his neck and right up onto his bald head. It seemed dramatic, until you realize the person who walked by him also had a tattoo covering their forearm, and the mom pushing her baby in the stroller has one encircling her ankle. I feel rather outdated. I don’t sport a single tattoo.

It makes sense that people with hemophilia will have tattoos as well. I am sure if we polled them, a great many of our guys have tattoos. As do their moms, probably!

So why is Portugal up in arms about it?

“Consumer rights association highlights Portugal’s lack of body art laws July 30, 2011. Consumer rights watchdog DECO has voiced concerns about Portugal’s lack of laws regarding piercings and tattoos. The association claims that it is up to the artists to warn clients about potential risks and health hazards that body art can entail, though many fail to do so. During February and March this year DECO paid 46 visits to 29 tattoo and body piercing parlours in and around Lisbon and Oporto. The association concluded that little improvement had been made since its last investigation, which it carried out in 2005.

“According to the watchdog, none of the professionals with whom their researchers made contact enquired about the client’s present state of health, and only 18 pointed out how to properly clean and look after tattoos or piercings. Eight tattoo artists said it was a painless procedure or avoided answering questions.

“The association stressed that “people suffering skin diseases like psoriasis, or who have allergies to paint, metal needles or nickel earrings should not have any type of body art”, and said that tattoos should be completely off limits to anyone who suffers from epilepsy or haemophilia.”

Completely off limits? Why? DECO needs to get up-to-date with hemophilia. I would recommend a prophylactic dose, but can’t imagine why anyone who has hemophilia could not get a tattoo.

DECO has demanded that a law is passed to protect consumers’ rights. I guess this might mean they would ban tattoos from those with hemophilia?

Hemophilia is still seen as an ancient and mysterious disease to most people. Tattoos are commonplace, and probably among our community, too. What would DECO say about Danny, who sports the most interesting of all tattoos for those with hemophilia? This tattoo might actually save his life one day!

Great Book I Just Read
The Devil and Miss Prym
Paulo Coelho

Are humans inherently good or evil? A mysterious man arrives in a remote, clannish and disintegrating town with a proposition. He will leave ten gold bars, worth millions, to the townspeople if they will simply kill one of their own. A former arms dealer, the stranger struggles with demons from the past and a personal tragedy. The town struggles also with a unique past and no future. While the town argues, withdraws, is afraid, one young woman decides to play the game, to beat the man she feels is the devil. Brazilian Coelho is one of the world’s most popular writers and presents stories that are simple to read, but profound in meaning. Three stars.

Pulse on the Road in Washington!

Laurie Kelley September 19, 2011

Sunny weather is rare in Washington state, but even the balmy temperatures could not keep away some hemophilia patients and families who wanted to learn more about healthcare reform. We had a solid turn out for “Pulse on the Road,” our unique symposium, sponsored by Baxter Healthcare Corporation, that is completely devoted to educating patients about insurance reform. As guests of the Bleeding Disorders Foundation of Washington, we presented a three-hour symposium on Saturday, September 10, to one of the most focused and interactive audiences I’ve ever seen.


To ensure families know why we got where we are, I started the session off with an overview of hemophilia’s history and how our unique history has been placed high on the radar screen of insurance companies and state governments. Did you know that the hemophilia community has enjoyed a heyday for the past 10 years, post-HIV devastation? Due to what happened to us, insurers have left us pretty much alone, not monkeying with prices or access to product choice. Those days are over, friends! I explained why over 30 minutes.

Next was Elizabeth Stoltz of Baxter Healthcare, who gave her Insurance 101 session. There are some new terms in healthcare reform that you’ll need to know, and she covered these and ones we should already know.

Michelle Rice, regional director of NHF, presented the results of a patient-focused survey from last fall, which tested to see how much bleeding disorder patients knew about their insurance and insurance reform. Results were encouraging, as high numbers knew that lifetime maximums were being eliminated and that dependents would be able to stay on their parents’ insurance until age 26. People are reading up, and that’s great!

In between each speaker we held a quick Q&A, based on the talk just given, with prizes! I’m telling you, people love these. We had speedy replies and winners, as this crowd was sharp!

Finally Jim Romano of Patient Services, Inc. (PSI) gave the keynote—an overview on the Affordable Care Act (ACA) — healthcare reform. Breaking down the many changes into digestible amounts, Jim covered how the new healthcare reform will help us, and what we need to monitor to ensure we continue to have access to the care we need.

Our message wasn’t just that we should all learn these terms and concepts–we are trying to educate families to keep the cash in their wallets. If we don’t pay attention, and know the small print, and know how ACA will affect those with chronic disorders, we may end up paying more for healthcare insurance. If we are not vigilant, the great benefits we expect from ACA—like no lifetime limits—could be challenged during upcoming elections. If you don’t know much about your own insurance policy, you may overpay.

Following the speakers we had three breakout sessions on Medicaid, Out of Pocket Costs and Advocacy. These interactive and informal gatherings always provide personalized answers to concrete problems. We were very pleased to have Cat Stulik, a social worker from Puget Sound Blood Center, join us in the Medicaid break out.

Thanks to Kristian Prill, executive director, and her team for a great morning. Thanks to Kevin Finkle for his wonderful photos! Thanks also to Baxter Healthcare Corporation for their generous sponsorship.

Visit our website (“Events”) to see where we take Pulse on the Road next!

Visit our website to download your complimentary copy of Pulse, our newsletter devoted to insurance reform for the bleeding disorder community.

Great Book I Just Read
Always the Children: A Nurse’s Story of Home and War
Anne Watts

This is a riveting memoir of a young girl, who lost her mother early and under troubling circumstances, was told she could not become a nurse by her father, and who fought every convention to follow her dream. She became a nurse, and then led a life of great adventure and drama, as she goes from one developing country to another, often in times of war, to aid the sick, the orphaned, and even lepers! Anne is fearless and has boundless compassion. You can almost feel her transformation from a naïve, shy girl, to take-charge nurse and mature woman. She is under fire in Vietnam, chatting with Bob Hope after a tragedy en route to one of his USO shows, in a hellhole refugee camp in Cambodia, and even stumbles across “haemophiliacs” in the Sudan. I wasn’t sure I would like this book as it started kind of slow, but it absolutely picked up steam, and I could not put it down. She reflects back on her life, and brings it all together at the very end… I won’t give it away, but it is a fabulous book, well written, funny, sad and powerful. Thank you Jan Howard of the Shetland Islands for sending this wonderful gift to me! Three stars.

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