Name Game, Game Change?

I’m thinking “game” this weekend because the Patriots are in the Super Bowl, again, and I will need to watch it like the rest of Boston. I only watched my first football game two years ago when, surprise surprise, the Patriots were in the Super Bowl. Every sports fan knows the Patriots, I am told. It’s easy to cheer for your home teams when the names (Red Sox, Patriots, Bruins, Celtics) endure for decades. It’s harder when it’s the drug companies that make your factor concentrate. There’s a lot of game changing going on lately.

The news was announced just three days ago: Biogen, maker of Eloctate and Alprolix, has spun off its hemophilia division, which has now become an entirely separate and new company called Bioverativ.

Biogen’s two revolutionary products, the first ones with a longer half-life, were game changers. Now there are a few more choices for longer half-life products, but these were the first and were rolled out with much fanfare. Then boom! Three years later, Biogen doesn’t want them anymore.

This is just a reminder to us patients that this is a marketplace, and we are consumers. And companies need to make business decisions—hence the “game.” As consumers, it’s up to us to understand how the game is played, and who are the players. The names have been changing, more rapidly than I can keep up with in the specialty pharmacy arena, and those are truly game changers.

In the factor concentrate manufacturing arena, we had two name changes just in the last few months: Biogen to Bioverativ, and Baxalta to Shire. But this has been happening for years in our community, so here’s a review. It’s worth knowing the players—of which YOU, the consumer, are the most important!

Remember Alpha? Those of you who use Alphanate or Alphanine may wonder why these drugs are called that when sold by the Spanish company Grifols. Simple: Grifols bought Alpha Therapeutics hemophilia therapies years ago and simply kept the drugs’ names the same. (It’s hard to change a drug’s name.) In 2011, Grifols also bought Talecris, making it the third-largest global manufacturer of plasma-derived therapies. Oh, and Talecris? It was a spin-off from Bayer, which didn’t want to keep plasma-therapies anymore. Bayer’s plasma-product Koate-DVI went to Talecris, and Bayer kept Kogenate FS. If you look at the Koate-DVI packaging, you’ll still see the Bayer primary color line around the box!

Baxter Healthcare produced factor concentrates like Recombinate, Advate, Hemofil M and FEIBA. It spun off its hemophilia division, which became an independent company called Baxalta. That didn’t last long. Shire, an Irish pharmaceutical company, liked what it saw and scooped it up. All the former Baxter/Baxalta products now belong to Shire.

The biggest name changer is CSL Behring. I knew it in 1987 as Armour Pharmaceutical. Then in 1996, Armour and Behringwerke (a Geman company) formed a joint venture known as Centeon. Things happen fast: in 1999, Centeon became Aventis Behring. Why? Armour’s parent companies (Rhone-Polenc Rorer and Hoechst) merged to become Aventis. Meanwhile, CSL (an Australian plasma therapies manufacturer) acquired ZLB Blood Transfusion Services. In 2004, CSL acquired Aventis Behring, to form ZLB Behring, later called CSL Behring.

(There’s a comprehensive timeline of this interesting company here.)

Genetics Institute: anyone remember that? They developed BeneFIX and ReFacto (no longer on the market). It evolved into Wyeth, and then was bought by pharma giant Pfizer Inc.

Bayer is one that seems to have stayed the same, but it’s had name changes too. Bayer bought Cutter Labs in 1978 and Miles Labs in 1979. In 1995, they all became Bayer. I think Novo Nordisk (Denmark) has stayed the same… so far!
And some companies dropped out altogether, like the American Red Cross.  And new ones entered, like Octapharma (Switzerland) and Kedrion (Italy), tapped to distribute Koate DVI for Grifols. And Aptevo Therapeutics… oh, which was owned by Cangene (Canada) first, then Cangene was bought by Emergent Biosolutions in 2014! And they all originated from Inspirational Biopharmaceuticals, which in 2013 sold all its product rights to them, and dropped out of the game.

More passes than Tom Brady!

Whew! It’s amazing tracking the history of just the name changes: but we also need to know products. We are tracking who makes what on our website Hemophilia Factor Chart by Brand, available as a download. We are updating it all the time… a necessity to keep track of this ever-changing game, and business.

I Am Laith: The Science of Self-Discovery

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.
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.

A Source of Support and Strength

Trying
to “go it alone” is a noble and brave course in the face of adversity, but not
always an ideal one, especially if you have a bleeding disorder. There is a
huge community filled with caring people, knowledgeable professionals and
valuable resources to help you. This week’s blog shares the experience of
Casey, who realizes how much he needs the support of the community, especially
when it comes to selecting a product that he and his physician believe is right
for him and his body’s individual needs.

Indications

ALPROLIX is an injectable
medicine that is used to help control and prevent bleeding in people with
hemophilia B. Hemophilia B is also called congenital Factor IX
deficiency.

Your healthcare provider may
give you ALPROLIX when you have surgery.

Selected Important Safety Information

Do not use ALPROLIX if you
are allergic to ALPROLIX or any of the other ingredients in ALPROLIX.


Please see ALPROLIX.com for the Indications and Important SafetyInformation , as well as the full Prescribing Information.

Growing
up, I usually didn’t talk about my hemophilia B. I was the first person in my
family to have hemophilia; diagnosed in early childhood. At school, when I would
have bleeds, I remember thinking that none of the other kids did. Without a
mentor, I kept my emotions to myself, no matter how vulnerable I felt.

My
dad gave me my treatments 99% of the time. Always getting the vein on the first
stick. However, my mom was a nervous wreck. One time she had to give me a
treatment, she tried again and again with no luck. She was in tears. In that
moment, she became my motivation to learn how to self-treat. So at the age of
10, I began managing my own hemophilia infusions. It was a liberating feeling.
I wasn’t so vulnerable after all.

It
was one of my nurses who told me about ALPROLIX. After discussing the risks and
benefits with my doctor, he explained that the recommended starting prophy
regimens are either 50 IU/kg once weekly, or 100 IU/kg once every 10 days. And
that the dosing regimen can be adjusted based on individual response. No two
people with hemophilia are alike, so it made sense to me that medication could
work differently in everyone. I started on a 10-day schedule, but when I had my
labs taken, my doctor told me that I could extend my infusions to once every
two weeks. That really fits my busy schedule. Thinking back on my childhood, I
never believed infusing every 14 days would be possible.

I
didn’t start taking ALPROLIX just for myself. I was also thinking of my two
nephews who also have hemophilia. After seeing my experience and talking with
their doctors, they started on ALPROLIX, too. I try to help with my nephews
when I can. I’ve even occasionally been their caregiver and given them a couple
treatments. I make sure they know they have me to look up to if they need
advice.

Watching
my nephews grow up brings back so many memories of my own childhood. We have a
special connection because I understand some of the challenges they face. They
have an advantage I didn’t have growing up: a close family member who knows
what they’re going through. I can help my nephews in a way no one could help
me. My goal is to help them find confidence in themselves and encourage them to
have fun being kids.

I
hope that by sharing my experiences, I might encourage others to figure out
what they have learned from their own experiences and take control over their
choices.

Thank
you.
To hear from other people
living with hemophilia B, check out thesevideos.
Talk to your healthcare team
about whether ALPROLIX may be right for you.
This blog was sponsored by Biogen, for educational
purposes.
FIX-US-0807   
06/2016

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.

At
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

An Inspiring ELOCTATE Story

The famous Nigerian poet and novelist Ben Okri wrote,
“Stories can conquer fear, you know. They can make the heart bigger.” In this
week’s blog, a young mother shares her personal story about hemophilia, about
overcoming fear, handling her emotions and learning about a therapy that could work
for her family. She shares her story, to help others facing the same fears. We
hope to bring you more such stories throughout the year.

Thanks! Laurie

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. Important Safety Information

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

My name is Sara, and my
8-year-old son Evan has severe hemophilia A.
The circumstances surrounding
Evan’s diagnosis are likely familiar to many other families in the community—a standard
heel prick that wouldn’t stop bleeding, eventually soaking his newborn clothes.
I remember the nurse quickly whisking Evan down to the nursery, and I watched
as three, four, then five nurses dropped what they were doing and frantically
tended to our baby over the course of the next hour. The doctor finally told me
he suspected Evan had a bleeding disorder and gave a very brief description of
hemophilia.
This was not the life I had
envisioned for my family.
Fast forward sixteen months
later—I had studied every pamphlet and book and memorized signs and symptoms of
every possible bleed like it was my job. I kept on top of appointments and
diligently brought Evan to the ER each time he knocked his head. And then it
happened, my greatest hemophilia fear: a spontaneous head bleed. Hearing things
like, “subdural hematoma, evaluate the need to drill, lucky to be alive,”—all
of it was so surreal. I felt helpless watching my innocent 16-month-old fight
for his life.
I somehow found it in myself
to channel that fear and anger into fuel for managing Evan’s hemophilia. I
forced myself to attend social events and conferences, and ended up making a
great handful of friends who have become a part of my hemophilia lifeline. At
doctor appointments, I began to ask questions without censoring myself in order
to get answers I could understand.
I also began researching
treatment options. By learning about ELOCTATE myself, I was able to work with
my doctor to find the answers to my lingering questions, evaluate the risks and
benefits, and make an informed, educated decision with our physician to see how
Evan would respond to it.
Evan has been taking ELOCTATE
for his severe hemophilia A since August 2014. He does typical 8-year-old
things like riding his bike, running, or playing sports with his cousins.
They’re boys so they want to tackle and hit. Now he knows he has to play
two-hand touch and with the Nerf ball. His cousins have grown up with him so
they’re used to it. They’re attitude is just, “Okay, cool. Let’s go play.”
Since starting on ELOCTATE,
he hasn’t had any spontaneous bleeds. And he’s becoming more receptive to being
involved in his own care.
I’ll always be a protective
mom, but it means so much knowing I can count on ELOCTATE to help care for
Evan’s hemophilia. I am not only grateful for the opportunity to share my
experiences as a caregiver of a child with severe hemophilia A, but also to
provide some wisdom, and, hopefully, some inspiration to a unique, capable, and
fantastic community of people.
You can see more about Evan
and me in our video here  on the
ELOCTATE website.
__________________________________________________________________________________
Talk to your healthcare
provider about whether ELOCTATE may be right for you. Please visit www.ELOCTATE.com to read the Indications and Important Safety Information , as well as
the full Prescribing Information .
ELO-US-0880
02/16
This blog was sponsored by Biogen, for educational
purposes.

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