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Ice Ice Baby: Hockey and Hemophilia

Laurie Kelley November 20, 2016

Janet Reimund (CSL), David Quinn, Laurie Kelley

We’ve all been told not to let our kids with hemophilia play hockey. One kid had no choice—he grew up in Rhode Island surrounded by sports lovers, and gravitated toward hockey. He excelled at it. So much so that he tried out for the US Olympics team in 1988.

Meet David Quinn, now head coach of one of the country’s best college hockey teams, the Boston University Terriers.

How can all this be? A guy with hemophilia, playing hockey?

David shared his remarkable story Saturday evening at Boston University, at a “Common Factors” event hosted by CSL Behring. In the audience were families with hemophilia B, some of whom came from as far away as New York to see David, and to attend a hockey match after the presentation.

Key to note is that David went undiagnosed most of his life, until he tried out for the Olympics. He knew he got bruised bigger and harder than his teammates; his ankles and elbows would ache. But he somehow avoided any broken bones and major contusions. That in itself is miraculous, given the brutal nature of the sport.

During the tryouts for the 1988 Olympics, he developed compartment syndrome, which happens when blood seeps into the fascia surrounding muscle tissue and is essentially trapped. This can result in nerve damage and even amputation. But David had excellent care, and had to wait six weeks to recover from surgery. When he healed, he was back on the ice. His doctor made him get a blood test, where they discovered he had mild hemophilia B.

Even knowing all this, he eventually was drafted professionally, in 1992 by the New York Rangers, and in 1992-3 with the Cleveland Lumberjacks. He never made it to the nationals, as he admits he had missed too much practice and training. Instead, he turned to coaching and never looked back.

David easily engaged with the audience, was witty and warm, and his message was: find your passion, take your factor, live your life.

He has a major position now as head coach, and so with a smile and wave, he had to dash out to coach that night’s game. The families stayed a bit longer to hear Gina Perez, mother of two boys with hemophilia B, and final words from Janet Reimund of CSL Behring.

Gina Perez

It was a great evening of learning and motivation, and socialization. I got to see so many friends that I rarely get to see anymore as our hemophilia meetings become more numerous and frequent. In particular Jessica Graham and Wayne Cook—hey guys! And I had actually met David 20 years ago, when I wrote an article about him for one of my children’s magazines. I can actually say I knew him way back when.

Thanks to CSL Behring for hosting this, and having it in my backyard practically.

My apologies to David but I’m not into hockey (I kind of like boxing, actually) so I skipped the game but kept the memories. Wonderful evening!

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Introducing Pfizer Hemophilia Patient Affairs Liaisons

Laurie Kelley November 14, 2016

I always like to highlight new tools and resources for our community. Sometimes it seems overwhelming when you consider all the programs available! In this week’s blog I share a way to take better advantage of resources, available from one group. Please read about the new Patient Affairs Liaison from Pfizer!

Pfizer understands that living with hemophilia is a unique journey and a growing process. That’s why Pfizer has established a group dedicated to providing meaningful support to local community groups, patients, and caregivers. The Patient Affairs Liaison role was created to help connect you with helpful Pfizer tools and resources.

What can a Patient Affairs Liaison do for you?

Provide helpful information about Pfizer Hemophilia programs and services
Serve as a resource to hemophilia treatment centers to help patients
obtain access to Pfizer medicines
Serve as a Pfizer hemophilia primary point-of-contact for local advocacy groups
Participate in local and national events and programs
Meet with you to answer questions related to Pfizer Hemophilia resources

Contact your Patient Affairs Liaison today! A Pfizer Hemophilia Connect representative will be able to put you in touch with your local PAL. Call Pfizer Hemophilia Connect at 1.844.989.HEMO (4366) Monday through Friday from 8:00 AM to 8:00 PM ET.

The content of this post is provided and sponsored by Pfizer. PP-HEM-USA-0633-01

Putting the Fun in Insurance Education

Laurie Kelley November 7, 2016

Pulse on the Road Speakers

I enjoyed a lovely weekend in Cleveland, Ohio, a wonderful city that was enduring a collective sigh over the loss of the World Series. Still, with sunny skies we held another Pulse on the Road with the Northern Ohio Hemophilia Foundation. Program/Advocacy Manager Randi Clites invited us earlier this year and we were thrilled to finally make it.

A solid turnout of families came to hear Kelly Lynn Gonzales share her riveting personal story of advocacy. You can read Kelly Lynn’s story in our latest edition of Pulse magazine, available on our website.

Michelle Rice and Kelly Lynn Gonzlaes

I followed next, with a presentation entitled “Sympathy for the Payer,” a play on the song “Sympathy for the Devil,” appropriate as Cleveland is home to the famous Rock and Roll Hall of Fame. I believe that if we can try to understand better how payers think, we can better advocate to them our need for access to product and providers for the best comprehensive care. I compared insurance to a chess game, and it’s our responsibility to know who the players are, what their moves might be and how to counter move.

Laurie Kelley introducing Patrick James Lynch

Michelle Rice, senior vice president of public policy and stakeholder relationship, NHF, then gave a new presentation called “Don’t Get Lost in Translation,” and shared the various acronyms, definitions and concepts payers use. All this information would be useful for someone with a bleeding disorder to self-advocate to payers, as Kelly Lynn successfully did.

Finally, after lunch… who knew insurance could be fun? Patrick James Lynch, of Believe Limited, and his teammates Ryan Gielen and Rob Bradford, engaged the audience in “Factor Feud,” a new game that allowed teams to compete using the knowledge they just absorbed through our presentations. Modeled after the TV game show Family Feud, Patrick acted as game show host and asked the teams at their tables to recall answers to various questions gleaned from our presentations. We all had a laugh when he asked the toughest question: What were the nine counter moves Laurie listed that payers have made in the last few years? Even I had a hard time remembering what I had said!

Patrick James Lynch

For each question Patrick charismatically posed, the teams consulted at their tables, racing against the clock. They wrote their answers on a white board, came to the front of the room—while game show music played and Rob swayed—and ta-da! Flipping their white boards over, Patrick read off the answers. The team with the right answers advanced an extra logo on the huge Factor Feud white board. Everyone got into the game immediately and loved it!

So not only did the audience of bleeding disorder families get tons of information about insurance, they got to revisit it, recall from memory, and compete to give correct answers. What an effective and fun way to learn!

Patrick is the perfect game show host, and the fact that he has hemophilia reminded me of how much talent and passion there is in our community. After the event, Sean, a father of a child with hemophilia, approached us and thanked us deeply for our efforts. He said this was one of the best information days he had been to.

Thanks to Sean for that, thanks to Randi Clites for hosting us, thanks to Shire for funding us, thanks to my fellow presenters—Kelly Lynn Gonzales and Michelle Rice—and thanks to Believe Limited for all the fun!

Answers please!

Patrick engages the audience

Ryan tracks the teams

The Factor Feud participants

Rob loves the 70s style theme song!

Susan Moore jots her answers down

Who won?

Stick-To-It-iveness! Improving Hemophilia Care in the Caribbean

Laurie Kelley October 31, 2016

Ray Greenidge and Erica Worrell of the Barbados (in red) with Laurie Kelley and Salome Mekhuzla (WFH)

No man is an island,
Entire of itself,
Every man is a piece of the continent,
A part of the main. —English poet John Donne

I stepped off the plane in Kingston, Jamaica on Thursday evening and the sultry, warm air enveloped me like a thick blanket. This tropical island has great music, savory food, friendly people, world-class resorts, a raging drug problem… and hemophilia. I was here this past weekend to speak at the first-ever conference for the English-speaking countries of the Caribbean. The Jamaica Haemophilia Committee hosted this landmark World Federation of Hemophilia conference.

I’ve been to Jamaica twice before to help the patients organize, and numerous times over the past 20 years to a few other English-speaking countries here, including Barbados, Bahamas, and St. Vincent and the Grenadines. All were represented here, at long last.

The emerging theme of the conference became isolation, and how
to break it. The poetry of John Donne expresses this so beautifully: so many people with hemophilia feel isolated, as if they are on an island, cut off from the world. Indeed, these people really are on islands! Our challenge is to unite patients and families with one another in their own countries, and then link and connect country with other countries, to learn from one another and to support each other. To make a hemophilia continent, and to reduce isolation.

Topics of the two day conference included: clinical management of hemophilia, outreach to community members, genetics, hemophilia in the Caribbean, WFH programs, comprehensive care, the role of nursing, physiotherapy, and patient involvement.

Who attended? Erica Worrell from Barbados, mother of a child with hemophilia, who just started a new society there in April and already held a successful walk to raise awareness; Brian and Ritchie Bardalez of Belize, young men who I have known since they were children, as I visited
Belize twice back in the early 2000s (they are now taking a leadership role);
Issa from Trinidad and Tobago, a patient and fiery orator, all my colleagues
and friends from Jamaica (Denton, Alex, Kirt, Berverly, Kerry-Ann, Milton,
Tamaicka, Sharon, Gricell, and the medical staff of UWI), Laurence Bakhsh, a brave young man from Guyana who we have helped for years with factor donations—first time meeting him!

The challenges are vast: Erica shared how there is no national registry of patients in Barbados, and how difficult it is to get factor. While the country buys some—a miracle in itself—you must get a prescription (wait time long), then go to the pharmacy (wait time even longer). You must pay for all ancillaries, right down to butterfly needles, which often are not even available! And tourniquets? Forget it. (We promised to ship her some ASAP.) Ritchie pointed out that Belize has closer ties with the Caribbean than with Central America, where he is located. There are only 16 known patients in Belize, and the terrain is the opposite of flat Barbados; it is mountainous with poor roads. A plane—“puddle jumper”—is the safest way to travel and distribute factor. 56% of the patients do home therapy, which spares them from expensive travel to clinics. There’s no hematologist—anywhere.

Bardalez brothers (Belize) with Valentino (Suriname), Dr. Eric (Belize) and Laurence Bahkesh (Guyana)

There’s also no hematologist in St. Lucia, reported Dr. Jackie Bird, a 58-year-old dynamo who seems to have single-handedly taken on care for all people with hemophilia on this volcanic island. Poverty is 28%, and there are only 6 known patients—all with factor IX deficiency! Factor is not available and never has been.

That made me sit up. Could we be the first to ship factor IX concentrate to St. Lucia? Jackie’s knees buckled, as she made a prayer sign with her hands, smiled and shouted, “Yes, thank you!” The room exploded in applause. This is the magic of these meetings: putting people together, those with and without, sharing honestly, and finding solutions. Yeah for us!

Patient Ray Greenidge, vp, and president Erica Worrell, Barbados Haemophilia Association and Charity

Laurence, a 33-year-old from Guyana, just founded a hemophilia society in 2015 and is struggling. After all, he has limited mobility, limited funding (he cannot work), and there are only 5 known people with hemophilia, including his brother and cousin. Guyana’s population of 755,000 means there are about 75 people with hemophilia. He has his work cut out for him. But with his natural charm and humility, he quickly became a favorite of all, and with his new network of colleagues, is bound to make improvements soon. “Strive to stay alive” is the organization’s tagline.

Laurie Kelley with Laurence Bakhsh (Guyana)

The Bahamas was represented by Florence Roker, mother of 21-year-old Chavez, who I met years ago. She has now stepped forward
to grab the reins of the floundering national organization. She broke into tears describing how Chavez has suffered: “You physically feel their pain,” she sobbed. Now, she said, regaining her composure, there are other children who suffer and who need our help. You have to find the silver lining behind the clouds. “This is a passion for me,” she concluded. “I’m motivated to get the organization to where it should be.”

Agent of change: Florence Roker of the Bahamas

An empowering and passionate speech was given by Issa, chair of the Society for Inherited and Severe Blood Disorders Trinidad and Tobago, an association for those with hemophilia, sickle cell and thalassemia. This is a brilliant strategy, to link up the three blood disorders to gain strength and have a stronger voice. And oh boy, does Issa have a strong voice! Motivating us and making us laugh, he stirred the audience emotionally with obvious leadership skills. T&T has been a WFH national member organization for 25 years, making it the oldest organization for hemophilia in the Caribbean. Issa declared that in the 1980s, West Indies cricket dominated the world. “Dominated!” he shouted. “Dominated! It happened when we united as one! We conquered the world!’ The audience laughed and applauded. Comparing this to diseases and disorders, T&T united as well. But unlike the West Indies cricket team, which had its glory days in the 1980s, “we are still a force to be reckoned with!” Issa declared.

But the most quoted person these two days was Jamaican hemophilia patient Tevon Brown, who stressed how isolated he felt growing up, as if he were the only person with hemophilia. He suffered terribly with pain, which felt like an “electric lead to my heart.” Strong role models and good teachers helped him. And he stressed now that we must unite and bring those who are isolated together, including nations. “We must have stick-to-it-iveness!”
he announced.

I must thank the World Federation of Hemophilia for organizing this conference, funding it, and inviting me, which allowed me to invite so many of the people I’ve met over the past 20 years. Kudos to Luisa Durante, regional manager of the WFH for Latin America, who is as hard working as she is fun as she is beloved by the people she serves. She and her team (Salome and Felipe) provided a magical two days. The WFH does great work, and we are
proud to support them and volunteer when possible. It takes stick-to-it-iveness to make long term changes in hemophilia care, and this is how it happens. Unity, hard work, passion.

I Am Laith: The Science of Self-Discovery

Laurie Kelley October 23, 2016

In this week’s blog, we hear a personal story from a young
man with hemophilia A, about how his self-perception changes throughout his
life, and how finding the right treatment made such a difference in the person he is
today.

Indications
ELOCTATE is an injectable medicine that is used to help control and prevent bleeding in people with Hemophilia A (congenital Factor VIII deficiency). Your healthcare provider may give you ELOCTATE when you have surgery.

Selected Important Safety Information
Do not use ELOCTATE if you have had an allergic reaction to it in the past.

Please visit www.ELOCTATE.com to read the Indications and Important Safety Information, as well as the full Prescribing Information.

It’s really difficult to find the words to describe living with hemophilia—not only because emotions and words are two completely different animals, but also because meeting new people under the premise of “Hey, I’m Laith, and I have hemophilia!” feels foreign to me.

I was diagnosed with hemophilia A after bleeding for 10 days after birth. For a time, when I was growing up, hemophilia was the coolest thing in the world—it was fascinating. I loved tagging along with my parents to the conferences and meeting other people like me. My dad drilled some strange love for science into my head early on, so the biology of it all was super attractive in my eyes. No time was wasted: I talked to my doctor and I started to self-infuse at the age of 10.

But right around the time I entered 5th grade, things really started to change. My hemophilia treatment center sent letters to my school administrators, who naturally put every teacher in the school on high alert. Something that I had thought was so cool about me suddenly became taboo. When I got to middle school, I ostracized myself. I faded into the background with my hemophilia and preferred invisibility.

The role hemophilia has played in my life became two things for me: steady and secretive.

In high school, I decided to take this opportunity to choose who I wanted to be and became “Laith without hemophilia.” My approach to dealing with my bleeding disorder in high school gave me more in common with a stealthy secret agent than I care to admit. Self-induced solitude was my friend, and I had every intention to master it as an art. “Laith without hemophilia” didn’t need to obey his prophylaxis infusion schedule. It didn’t matter how swollen my arm was, I was going to wait until I was either at home or hidden in some part of the school to infuse.

Abrupt abandonment of friendships, unexplained absences, outrageously convoluted excuses, and unreturned phone calls proudly became my hallmarks.

But, I had awesome physicians my entire life. My hematologist was persistent, justifiably so, in encouraging me to stay on schedule with my infusions. Then I heard about ELOCTATE. It may be due to my lifetime interest in the science of hemophilia, but the prolonged half-life of ELOCTATE piqued my childhood curiosity. My doctor, clever guy that he is, picked up on this. We talked and decided on ELOCTATE as a treatment option because he thought the every-four-days infusion schedule might work for me. A MyELOCTATE™ Coordinator worked with me to make sure my transition to ELOCTATE went smoothly and supplied me with medication while my insurance worked to approve it. After working with my doctor, I’ve settled into the routine of infusing every four days*. I have been able to stay on track. I schedule my infusions ahead of time, and, for the most part, I’ve kept up with them.

No two people are the same, right? Now at 24, what I’ve discovered about people in general is that to secure a place and purpose in life, one must take ownership. Being that hemophilia has been my Achilles heel in this regard, I’m treating it as a priority. I figure only then can I discover who I really am. I’m not “Laith without hemophilia.” I’m not even “Laith with hemophilia.” Hemophilia is one part of the many parts that make me whole.

This is my story; peeling back my layers one at a time and showing others that it is possible to discover who they really are.

Thank you.

Hear more from other Peers like Laith at ELOCTATE.com/Peers.

Talk to your healthcare provider about whether ELOCTATE may be right for you.

*The recommended starting regimen is 50 IU/kg of ELOCTATE administered every 4 days. Adjust the regimen based on patient response with dosing in the range of 25-65 IU/kg at 3-5 day intervals.

For children <6 years of age, the recommended starting regimen is 50 IU/kg of ELOCTATE administered twice weekly. Adjust the regimen based on patient response with dosing in the range of 25-65 IU/kg at 3-5 day intervals. More frequent or higher doses up to 80 IU/kg may be required.

Important Safety Information

Do not use ELOCTATE if you have had an allergic reaction to it in the past.
Tell your healthcare provider if you have or have had any medical problems, take any medicines, including prescription and non-prescription medicines, supplements, or herbal medicines, have any allergies, are breastfeeding, are pregnant or planning to become pregnant, or have been told you have inhibitors (antibodies) to Factor VIII.

Allergic reactions may occur with ELOCTATE. Call your healthcare provider or get emergency treatment right away if you have any of the following symptoms: difficulty breathing, chest tightness, swelling of the face, rash, or hives.

Your body can also make antibodies called, “inhibitors,” against ELOCTATE, which may stop ELOCTATE from working properly.
The most frequently occurring side effects of ELOCTATE are headache, rash, joint pain, muscle pain and general discomfort. These are not all the possible side effects of ELOCTATE. Talk to your healthcare provider right away about any side effect that bothers you or that does not go away, and if bleeding is not controlled after using ELOCTATE.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

ELO-US-1092 10/2016

This blog was sponsored by Biogen for educational purposes.