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.

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.

Another Product Debut: FVIII This Time!

We were hoping for an August approval, but it seems the FDA is making Biogen Idec’s day. Two products approved in two and a half months! Both with extended half-life. Eloctate [Antihemophilic Factor (Recombinant), Fc Fusion Protein] is the newest factor VIII product. 

A new era of hemophilia treatment has begun. I read somewhere that the last truly “new” product that was introduced was Advate, in 2002. True?

The hemophilia industry is big, with much at stake. The introduction of two new products, with distinct and so far unique,  differences, may cause a shake up. And more products, with longer half-lives included, are coming.

More products give us more choice.  But you have to know what it is you are choosing between.  I have to say I don’t think hemophilia parents and patients are as well informed as they should be. I just conducted a recruitment of patients and caregivers this past week, looking for those who use “plasma-derived” products ONLY. I couldn’t believe the number of people who called to participate who use recombinant. They asked: what does plasma-derived mean? Isn’t the product I am using plasma-derived because it contains Albumin? Or worse, arguing with me that a recombinant product is plasma-derived.

We’ve written so many articles describing the difference between the two categories. All factor is either plasma-derived (originates from human blood) or recombinant (from human genes in the lab). The new product is a recombinant product manipulated to last longer in the blood—basically through a longer half life.

One savvy mom I’ve known for year, who has a son with the World’s Most Stubborn Inhibitor, wrote this to me:

It’s important for Biogen Idec to make clear that this product has not been tested in Previously Untreated Patients (PUPs), and the risk of inhibitors is highest in this group.
Biogen Idec will be opening up a clinical trial for PUPs and I am encouraging anyone who wishes to use the Alprolix (long-lasting recombinant FIX) in a previously untreated patient, to wait and enroll in that trial, so Biogen can gather the appropriate data to understand how safe the product will be in PUPs.
Please always speak with your HTC hematologist to learn which product is best for you or your loved one. (And I don’t usually use underlines in my writing! Yeah, it’s that important)

To learn more about Eloctate, visit:

http://www.biogenidec.com/therapies_eloctate.aspx?ID=20259
Good Book I Just Read
The Right Stuff by Thomas Wolfe [Kindle]
The gripping story of the origins of the space race, and the American men who volunteered to become the first Americans in space. The Mercury astronauts, made heroes by the press and NASA, possessed the character and qualities that made America proud. The book covers a lot of ground, from what it’s like to sit in the cockpit, going to Mach 1, the speed of sound, the tough men who were test pilots, the culture of the test pilots, and eventually the program to put a man in space. It’s a great story (and the movie is superb) and you’ll learn a lot. Wolfe’s flamboyant, hyperdramatic and  over-the-top style just wore on me terribly and I had a hard time eventually getting through this. Way too many exclamation points per page! Great story, odd writing though many consider Wolfe a national literary treasure. Three stars/five.
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