April 2016

Resiliency Key at HFA’s Symposium 2016

Jane Cavanaugh Smith (middle), with CoRe managers
I have known Laurie Kelley for more than 20 years and can’t begin to
count the number of times I have looked to her for education, resources, and
support.  So, it is such an honor to be a
guest blogger for HemaBlog. My name is Jane Cavanaugh Smith and I am a Biogen Community
Relations (CoRe) Manager. My son has hemophilia and we were fortunate to
connect early with our local chapter. This led to an unexpected and extremely
rewarding career with the New England Hemophilia Association, and later, the
Hemophilia Federation of America (HFA). When Biogen introduced CoRe Managers several
years ago, I watched with interest as their team grew. The fact that a CoRe
Manager’s sole job is to support our community—to listen, educate, connect, advise,
and serve–confirmed that Biogen was the place for me.
Jane speaking at HFA
At HFA’s Symposium 2016, held March 31 to April 2, the theme, “Together
We Are Resilient” beautifully captured the strength of our community because resiliency
is about bouncing back. Individuals and families have to regularly overcome obstacles,
but sometimes the challenges are overwhelming. That’s when we turn to each
other in the open, honest, and supportive environment that HFA provides. These
connections live on long beyond the Symposium. 
“Together We Are Resilient” was carried through the conference in a
variety of sessions and activities aimed to feed mind, body, and soul.
Knowledge is power and key to weathering rocky times. Activities included daily
Zumba sessions, aquatic therapy, yoga, and a Health & Wellness Lounge.
Session topics included women’s issues, advocacy, insurance, treatments, and
inhibitors. A few personal favorites include the Awards Luncheon, the
Remembrance Ceremony, the rap sessions, seeing kids in matching shirts and
holding hands, and all the hugs, tears, and laughs.

Biogen, we took the theme to heart, too. Each day at HFA, we tried to provide
families with new opportunities to meet, learn, and be resilient together. It
was a blast. The Chapter Challenge games brought out altruism and humor as
visitors tried to win donations for their local chapter. The Biogen Peer videos (click here, and here) showcased inspiring role models. Many visitors inquired about our therapies,
so it gave me and my fellow CoRe Managers countless opportunities to get to
know even more people in the hemophilia community. I like to think that
resilient people see meaning and purpose in what they do. I definitely see that in my fellow CoRes. We
build resilience by showing our vulnerability, empathy, understanding, and
appreciation, and gratitude for each other.

Jane interviewing Chris Bombardier
I was also honored to emcee Biogen’s Friday dinner program, Food for
Thought. I’ve never spoken in front of a large crowd, but I knew that I was surrounded
by friends. Our keynote speaker, Chris Bombardier, shared his inspiring story
of overcoming challenges despite long odds. Chris has severe hemophilia B but
is on a quest to climb the world’s seven summits. Hearing his motivation and
drive, he will surely complete the remaining two. 
Biogen “gets it.” They celebrated the power of positive thinking to
inspire our community. As the program came to a close, I looked over at my son
who is the source of my strength and hope. I am deeply thankful for this
community. Together we celebrate the highs and find comfort during lows. Together
we are resilient.
Biogen’s CoRe managers at HFA
To find a Biogen CoRe Manager near you, visit CoReManagers.com.

This blog was
sponsored by Biogen for educational purposes.
HEM-US-1012   04/16

Celebrating World Hemophilia Day

Today is World Hemophilia Day, celebrated by thousands of people with hemophilia around the world. We’re a small community: only an estimated 400,000 worldwide. Of this, only 25% are estimated to have adequate treatment. The majority with hemophilia have little to no access to medical care or factor, the blood clotting medicine that stops bleeding.

Today is also the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who moved to Canada to seek better access to treatment and financial coverage for that expensive treatment. It was there he founded the WFH over 50 years ago. Today the WFH represents a staggering 120 countries as members. With membership, these countries receive NGO training, medical help, donations of factor and educational materials.

This week I am traveling to one of WFH’s member countries, Uganda. This is my first time there, and I go to invite the country to join our child sponsorship program Save One Life. Save One Life has over 1,200 children and young adults with bleeding disorders enrolled and has over 400 sponsors who provide financial support. Nurse Kate Khair, from the Great Ormond Street Hospital in London, has been to Uganda several times to help diagnose children with hemophilia. She wrote to me about the challenges of working in a country where so many are undiagnosed and live in rural areas:

Pictures from Barbados’s first World
Hemophilia Day!

“I met a family of 4 boys who have a small holding about a 5 hour drive from Kampala (the capital). When we were there, mum was 8 months pregnant, the boys all have terrible joints and told us about having to go to the river to get water – imagine that with a big knee bleed. There was one sister; she and the dad were essentially holding the family together. The boys’ wish was to be able to go to school, but it was too far to walk. I’m sure this is a familiar story for you, but my 2 team members and I have been profoundly affected by them. Save One Life makes, I know, massive impacts on families like these.” 

Indeed it does! I am especially encouraged today by the efforts of a mother of a child with hemophilia in Barbados, Erica Worrell, who has created the first hemophilia society there. Two years ago I traveled to Barbados to try to motivate the patients to start a national patient organization. The interest was there, the needs are great; we met quite a few families and planted some seeds of advocacy. All it took at last was one brave mother to take the first steps. Today, Barbados celebrated World Hemophilia Day for the first time, and has joined our global community. This is what the day is all about, celebrating the efforts of the many who work so hard to bring support and medical help to those in need, while bringing attention to the public about this rare disorder. Together, we can do it, and fulfill a dream Frank Schnabel had so long ago.


Remembering Ryan

On April 8, 26 years ago, 18-year-old Ryan White died.
He is remembered in the bleeding disorders community for his extraordinary courage. Born with hemophilia, he was diagnosed with AIDS when he was only 13, in 1984. AIDS was not well understood at this time, and fear was rampant in the public. People thought you could catch HIV by shaking hands with someone with it, or just being near them. Ryan contracted HIV from his clotting factor, which at the time was not treated to destroy viruses. He posed no threat to anyone.
When his school tried to keep him from attending, Ryan and his mother Jeanne White Ginder launched a legal battle, and Ryan became a celebrity. And celebrities stood by him, including Michael Jackson and Elton John. He became the face of discrimination against those with HIV, and became an advocate for AIDS research and public education. He died in April 1990, one month before his high school graduation.
In August 1990, four months after White’s death, Congress enacted The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (often known simply as the Ryan White Care Act), in his honor. The act is the United States’ largest federally funded program for people living with HIV/AIDS. The Ryan White Care Act funds programs to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families. The legislation was reenacted in 1996, 2000, 2006, and 2009, and is now called the Ryan White HIV/AIDS Program.
Today, his mother Jeanne continues to advocate to spread Ryan’s message and story. 
For an excellent multimedia look at Ryan’s impact on the hemophilia community, visit HFA’s website

Considering Long-Term Health into Your 20s

By the time teens with hemophilia transition into their 20s, ideally they’ve built a firm foundation on which to manage their disorder. Among many skills, young adults should be able to self-infuse and negotiate health insurance. But when you’re healthy and your hemophilia is under control, it’s easy to overlook general health maintenance beyond hemophilia.
            It’s uncommon for 20-somethings to consider the long-term impact of their lifestyle choices. So what if I’ve gained a few pounds? I only smoke when I’m out with friends. I look so much better with a tan. But young adulthood is the time to develop the habits that will help maintain a healthy body in the decades ahead.
I’m Independent. Now What?
Perhaps more than any other time in our lives, the 20s are a decade of major transformation. Many young adults move out of their parents’ home. Others graduate from college. Even those who’ve diligently managed their hemophilia may be thrown for a loop by all the changes in their lives.
            Your hemophilia treatment center (HTC) may no longer be in the same town or even the same time zone. And finding an HTC is just one of the myriad issues you’ll need to address: Where will I buy groceries? How long will my commute be? When will I find time to renew my driver’s license?
            These changes may take priority, and if you’re feeling healthy, finding a local dentist or doctor doesn’t seem all that pressing. Plus, who has the time?
Not Enough Hours in the Day
Entering the 9-to-5 world for the first time is a big deal that can have a major impact on your health—and not just for those in Deadliest Catch-type occupations. For many, this is their first experience sitting behind a desk for several hours a day. A tangible and common consequence is weight gain. The Centers for Disease Control and Prevention (CDC) reports that an astounding 20% of Americans in their 20s are obese. Not only is extra weight bad for your joints, but obesity is a contributing factor to several leading causes of death, including heart disease, stroke, and certain types of cancer.
            The effects of “a few extra pounds” may not be immediately apparent, but that’s the point. In your 20s, you need to establish good habits to protect your body for the long run. This means adjusting what you’re eating while maintaining some form of routine exercise. Neither is easy to accomplish when you’re just starting life on your own.
            Ian Muir, a 25-year-old with hemophilia, took a new job recently and is slowly figuring out how to get all the pieces of his life to mesh. In college, Ian competed in triathlons, training 25 hours a week. “In school, you had the motivation of working out with your teammates,” says Ian. “And you had a relatively flexible schedule.” Now he’s struggling to find the hours to train for just a fraction of that time. And like many of his peers, Ian has let his diet suffer: “I know I need to get back to eating food that’s good for me, and not just what’s convenient.”
            Living healthy in your 20s doesn’t necessarily require big time commitments. In some cases, you just have to make better choices: When you can, take the stairs instead of the elevator. Cut back on the amount of alcohol and caffeine you consume.
And if you’re among the 1 in every 5 Americans who smoke, quit now. According to the CDC, smoking causes more deaths in the US than alcohol, illegal drugs, and motor vehicle accidents combined.
            Sure, you may not have all the time in the world, but your general health should sit atop your list of priorities.
Molehills Can Become Mountains
While you lived at home with your family, you probably had a stable network of medical resources. But once you’re on your own, you may need to rebuild that network by establishing a relationship with your new HTC, plus maintaining all facets of your health.
            Dental health is one of the most neglected aspects of overall well-being. By the time you’re in your 20s, Mom or Dad probably don’t schedule your dentist appointments, which means that nobody does…until a minor toothache becomes something worse.
            Ian tells a common tale. “I’ve been a bit derelict when it comes to the dentist. What probably wouldn’t have been a big deal had I stayed on top of it, ended with a root canal.”
            Your primary care physician (PCP) can be your best ally. You’ll turn to your PCP when you can’t kick that cough you’ve had for three weeks or are worried about anything from a wart on your foot to your sexual health.
            As Ian assembles the medical resources he needs near his new home, he sees the value in finding the right PCP. “You want someone you can go talk to about health concerns that aren’t hemophilia related,” he says. “Someone who knows you and your medical history and if necessary, who can point you to the right specialists.”
            In addition to addressing your current health concerns, your PCP will review your family history with you, assessing your risk for ailments like heart disease, diabetes, and certain cancers. Armed with this information, together you can develop a plan to reduce some of the risks.
Why Do Today What I Can Put Off ’til Tomorrow?
Throughout your 20s, medical concerns may surface that have nothing to do with hemophilia, and everything to do with the natural aging process. You’ll begin to shed the cloak of invincibility you donned as a teen, and realize that you need to act with an eye to your future.
            So manage your total health as attentively as you manage your hemophilia:
            • Eat a healthy, balanced diet.
            • Maintain your optimal body weight.
            • Make exercise a priority.
            • If you drink or smoke, reduce your alcohol consumption, and quit smoking!
            • Schedule all the exams you’ve neglected for so long.
            • If you don’t have a local dentist, eye doctor, or PCP, contact your HTC or insurance company. They can help you find one.
True, for now, you can ignore the incessant commercials for “old people” drugs like Lipitor. But let them serve as a reminder for the not-too-distant future. What’s Lipitor anyhow? It’s a drug that controls cholesterol. What’s cholesterol?

It’s one of many topics you and your doctor should start discussing.

by Kevin Correa
PEN 2.11     © 2011 LA Kelley Communications

Hear About Nathan’s “IXperience” With His Factor IX

Last year I told you about the FDA approval of IXINITY® [coagulation factor IX (recombinant)] for people with hemophilia B (FDA Approves a New Factor IX Treatment for Hemophilia B!).  Now people are sharing their firsthand experiences with this factor IX. Watch Nathan’s full video to see more of his story on IXINITY.com.
Be sure to speak with your doctor about any new treatment that you’re considering. This is Nathan’s experience and it may not be typical. 
(The following is a paid placement of product information by Emergent BioSolutions.)
Here’s what Nathan says about his IXINITY IXperience™. 
I’m 19 now and have severe hemophilia B. Over the years I’ve had a lot of bleeds. What interested me in IXINITY was that there were no inhibitors found in the clinical trials, the recovery rate was 98%,* and it’s not a plasma-derived product.

My hematologist and I collaborated and thought that with a 98%* recovery rate, we should be able to at least try to lower the dosage. Now I’m infusing 4,000 IU per infusion—less than in the past. 
Since I started IXINITY in July of 2015, I’ve experienced no bleeds. I also like the IXINITY reconstitution device. It’s so simple, and there’s really nothing to it. It’s just right there in front of you. 

Nathan’s experience with IXINITY may not be typical. Speak with your doctor to see if IXINITY may be a good option for you. 

*IXINITY recovery is an average based on lab tests of patients in the clinical study.1 Your actual recovery and dose may be different. Speak with your healthcare professional about the right dose for you. 
Visit IXINITY.com to learn more about IXINITY and the FACTOR IT FORWARD program. You can also call an IXINITY IXperience Concierge™, toll-free, at 1-855-IXINITY (1-855-494-6489). 
What is IXINITY®? 

IXINITY [coagulation factor IX (recombinant)] is a medicine used to replace clotting factor (factor IX) that is missing in adults and children at least 12 years of age with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease. Hemophilia B is an inherited bleeding disorder that prevents clotting. Your healthcare provider may give you IXINITY to control and prevent bleeding episodes or when you have surgery.
IXINITY is not indicated for induction of immune tolerance in patients with hemophilia B. 

• You should not use IXINITY if you are allergic to hamsters or any ingredients in IXINITY. 
• You should tell your healthcare provider if you have or have had medical problems, take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements, or herbal remedies, have any allergies, including allergies to hamsters, are nursing, are pregnant or planning to become pregnant, or have been told that you have inhibitors to factor IX. 
• You can experience an allergic reaction to IXINITY. Contact your healthcare provider or get emergency treatment right away if you develop a rash or hives, itching, tightness of the throat, chest pain, or tightness, difficulty breathing, lightheadedness, dizziness, nausea, or fainting. 
• Your body may form inhibitors to IXINITY. An inhibitor is part of the body’s defense system. If you develop inhibitors, it may prevent IXINITY from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for development of inhibitors to IXINITY. 
• If you have risk factors for developing blood clots, the use of IXINITY may increase the risk of abnormal blood clots. 
• Call your healthcare provider right away about any side effects that bother you or do not go away, or if your bleeding does not stop after taking IXINITY. 
• The most common side effect that was reported with IXINITY during clinical trials was headache. 
• These are not all the side effects possible with IXINITY. You can ask your healthcare provider for information that is written for healthcare professionals. 
Please see full Prescribing Information for IXINITY here.
You are encouraged to report side effects of prescription drugs to the Food and Drug Administration. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. 
Reference: 1. IXINITY [coagulation factor IX (recombinant)] prescribing information. Winnipeg, MB, Canada; Emergent BioSolutions Inc.; April 2015. 
Manufactured by Cangene Corporation, a subsidiary of Emergent BioSolutions Inc. and distributed by Cangene bioPharma, Inc., a subsidiary of Emergent BioSolutions Inc. 
IXINITY® [coagulation factor IX (recombinant)], IXperience, and any and all Emergent BioSolutions Inc. brand, product, service and feature names, logos, slogans are trademarks or registered trademarks of Emergent BioSolutions Inc. or its subsidiaries in the United States or other countries. All rights reserved. 
©2016 Emergent BioSolutions Inc. All rights reserved. CM-FIX-0024 
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