Laurie Kelley

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

Laurie Kelley April 4, 2016
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.)
Nathan
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.1 

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). 
IXINITY INDICATIONS AND IMPORTANT SAFETY INFORMATION 
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. 
IMPORTANT SAFETY INFORMATION for IXINITY® 

• 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 

An Inspiring ELOCTATE Story

Laurie Kelley March 14, 2016

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.

The Education Advantage!

Laurie Kelley March 6, 2016
Our community is fortunate to have many different scholarships. In fact, LA Kelley Communications had the first on-line listing of scholarships for the bleeding disorder community! That’s how much I believe in a higher education. Take advantage of what the community is offered! Learn about Education Advantage below! 
Laurie 
Education Advantage – Scholarships for our Community brought to you by Baxalta 

Since 2010, Education Advantage has awarded more than 200 scholarships to US students with bleeding disorders. 
The scholarship program has grown! New for 2016, those with von Willebrand disease are invited to apply! The program continues to be open to hemophilia A, hemophilia B, and inhibitor patients. Education Advantage is open to US students, regardless of which brand of treatment used. 
Education Advantage offers three different scholarships to eligible applicants: 
• University Scholarship:  
       Up to $7,000 for students working toward their bachelor’s degree 
       Renewable for up to 3 additional years 
• Community College and Technical Scholarship:  
       $1,000 for students seeking an associate’s degree or a technical vocational certificate 
       Renewable for up to 1 additional year 
• GED Assistance:  
       One-time $150 reimbursement if you pass the GED test 
Get started on your application today at www.BaxaltaHematology.com/EA 
The application period for 2016 is open now until April 30. You can find more details about the scholarships, meet the previous year’s winners, and find out how quick and easy it is to apply at www.BaxaltaHematology.com/EA

This message is supported with funding from Baxalta
USBS/MG1/16-0041 

New for 2016: Pfizer’s Factor Savings Card Program Increases to $12,000

Laurie Kelley February 28, 2016
Good news if you struggle with copays and coinsurance!
In 2016, Pfizer made enhancements to the Hemophilia Factor Savings
Card Program to better align with the needs of their hemophilia patients. This
program has increased the maximum benefit for copay and coinsurance assistance
up to $12,000 for eligible patients on Pfizer Factor products.*
Eligibility
Requirements Include:

·      
No financial eligibility requirements
·       Available
to privately insured patients or uninsure
(     
       But please see website for full terms and conditions.
Program
Website:
·       www.HemophiliaVillage.com (resources
and support)
*Terms and conditions apply. This card will
be accepted only at participating pharmacies. This card is not health
insurance. No membership fees. You will receive a total benefit of $12,000
per calendar year, or the amount of your co-pay over one year less a patient financial
responsibility of $10 per month, whichever is less.
If you have any questions about the use of this
Pfizer Factor Savings Card, please call 1-888-240-9040 or send questions to:
Pfizer Factor Savings Program, 6501 Weston Parkway, Suite 370, Cary, NC 27513.
For more information, please visit www.HemophiliaVillage.com.
The content of this post is
provided and sponsored by Pfizer.

Row for Hemophilia!

Laurie Kelley February 22, 2016
If you think “Row for Hemophilia” sounds like a nice little fundraising event taking place at a local fitness center, you may be surprised to learn that it is actually a 2,400 mile
unassisted row by a young man with hemophilia across the Pacific Ocean! 
Who would be adventurous and determined enough to take on such a formidable challenge? Two University of Georgia students, Jacob Pope and Chris Lee, who are on the rowing team and have a connection to hemophilia and to Hemophilia of Georgia are planning this ocean row. They currently are in the process of raising funds to compete in The Great Pacific Race in June 2016.

Donate here!

Hemophilia advocacy and treatment is a cause close to Jacob’s and Chris’s hearts. Jacob has hemophilia B. He is passionate about health and lives as active a lifestyle as he can within the bounds of his hemophilia. A management information systems student, he plans to do medical consultancy and nonprofit work. Last summer, Jacob interned at Emory’s Aflac Cancer and Blood Disorders Center with Dr. Shannon Meeks. He is a John Youtsey Memorial Scholarship recipient, attended Camp Wannaklot and has volunteered at Trot to Clot events.
Chris studies genetics at UGA and is fascinated by genetic disorders such as hemophilia. He is a premedical student in his third year. The two met on the rowing team and have been close friends ever since. Together, they hope to bring awareness and provide financial support to organizations such as Hemophilia of Georgia. They both share a drive to push their own limits and a desire to make a real difference in the community. The idea for Row for Hemophilia came about because they wanted to have an extraordinary adventure that could impact others as well as themselves.
Typical crossings take between 30-80 days for the 2,400 mile journey. The length of time varies due to wind, storms and currents. Jacob and Chris anticipate completing the journey in 45 days due to their rowing experience and technical training. Their goal is to complete 50-55 miles each day, split up in shifts, rowing both separately and together.
Their boat will be 27-29 feet long with two cabins. GPS and autopilot to help them stay on course. It will also contain emergency equipment, tools, a repair kit, a Wi-Fi hub and a satellite phone.
Jacob and Chris will need to consume 10,000 calories daily, most of it coming from dehydrated
backpacking style meals. Water will come from an onboard water-maker capable of desalinating up to 8 gallons per hour. 
It’s organized ocean rowing race so they’ll be trailed by a support yacht and have 24/7 access to an emergency medical consultancy line. Jacob has moderate hemophilia and after discussing his plans with his hematologist, has decided to follow a fairly aggressive infusion schedule. He will bring approximately 20 doses of factor with him.
Jacob and Chris hope to set some records, too! If successful, the pair will be the youngest team to complete the row across the Pacific Ocean, from California to Hawaii, and Jacob will be the first person with hemophilia to have completed an ocean row!
The boys hope to raise $150,000, and have already reached about $50,000. This will just about cover their expenses. More funds are needed which will be donated to HoG, to help fund research and for camp. Upon completion of the race, all functional equipment will be sold to the rowing community with the proceeds added to the amount donated to HoG. Fundraising is their top priority and Jacob and Chris want to guarantee to donors that their generosity will make an impact. 
Learn more about Row for Hemophilia and how you can donate funds to help Jacob and Chris achieve their incredible goal of rowing unassisted across the Pacific Ocean and bringing awareness to
hemophilia. Follow their progress on Facebook and Twitter and donate here!

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