hemophilia B

Just B with IXINITY®

Laurie Kelley May 28, 2017
It’s refreshing when a company really
connects with the community they’re providing treatment options for, which is
why today, I’m happy to spread the word about the new promotional campaign from
Aptevo, the makers of the factor IX treatment, IXINITY® [coagulation
factor IX (recombinant)].
Read below to get the story on how
people in the hemophilia B community inspired the campaign, plus see it for yourself at JustBIXperiences.com.

This is a paid public announcement from Aptevo and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to the IXINITY website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal
identifying information against your will.
 

Finding inspiration from familiar faces

As IXINITY marks its second anniversary
as a treatment option for those with hemophilia B, the people behind the
product are excited to start the next phase with a fresh new face. They didn’t
have to look very far, because who better to represent the close-knit
hemophilia B community and the company that cares about them than real people actually
using IXINITY?
Introducing…
Just B: Because life is bigger than hemophilia
B, make it your IXperience™ with IXINITY.

Please see Important Safety Information for IXINITY below.
An idea that became an identity, inspired
by everyone who is redefining what it means to have hemophilia B by living life
on your own terms and Just B-ing yourself.
By sharing your experiences, your
expectations, and your aspirations, you’ve shown that, regardless of having
hemophilia or not, everyone deserves the chance to Just B.
Meet the first people to be featured
sharing their IXINITY stories (and see if there are any familiar faces from the
community that you recognize) at JustBIXperiences.com.

Plus, find out more about what it means
to Just B and get connected in the IXINITY Family Room on Facebook.

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.
For more information about IXINITY, please see full Prescribing Information,
including Important Patient Information.
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.
 
Aptevo
BioTherapeutics LLC, Berwyn, PA 19312
IXINITY [coagulation factor IX
(recombinant)] and
any and all Aptevo
BioTherapeutics LLC brand, product, service and
feature names, logos, and slogans are trademarks or registered trademarks of Aptevo
BioTherapeutics LLC in the United States and/or
other countries.
©
2017 Aptevo BioTherapeutics. All rights reserved. CM-FIX-0159

See how James found the factor IX option he’d been searching for

Laurie Kelley December 11, 2016
As we’re full swing into the holiday spirit and a new year is just around the corner, it seems like the perfect time to

share this inspiring story of a young man with hemophilia B named James. Please read below to learn about his

story and his choice of treatment.

Laurie
After missing out on much of his life because of bleeds, James found a fresh start with the help of the right treatment for him…IXINITY® [coagulation factor IX (recombinant)].

Watch James share his story at IXINITY.com.

Interested in learning more about IXINITY? Connect with a Hemophilia Territory Manager near you at MyIXINITYRep.com.

And remember, this is James’ experience; different people may have different results. You should always talk to your doctor to decide which treatment is right for you.

Meet James

“Since birth I’ve used different hemophilia B products, and regardless of treatment, I continued to have breakthrough bleeds most every other week. I felt I had no control over my health, and that led me down a bad path as I started making some unhealthy choices in my teen years.

When I was 21, I saw an ad for a clinical trial of a new recombinant hemophilia B treatment. I thought, ‘I have nothing to lose.’

After a few weeks in the clinical trial, I stopped having bleeds almost entirely. I realized I didn’t know what feeling good felt like. I felt more in control, and it was a liberating experience.

One day I decided to go running—I don’t know what made me decide to because I’d never really done it before. But I thought, ‘I’m just going to go for a run,’ and about a mile later, I thought, ‘Huh! This is awesome’

After talking with my doctor, I’ve now developed a habit of running 3 times each week with my dog, and exercising regularly.
To be honest, switching to IXINITY was the best decision I ever made. I don’t feel like someone with hemophilia; I forget I even have it.”

See more of James’ journey at IXINITY.com.

James’ experience with IXINITY may not be typical. Speak with your doctor to see if IXINITY is the right treatment for you.

The content of this post is provided and sponsored by Aptevo Therapeutics.

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.

For more information about IXINITY, please see full Prescribing Information, including Important Patient Information.

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.

Aptevo BioTherapeutics LLC, Berwyn, PA 19312

IXINITY [coagulation factor IX (recombinant)] and any and all Aptevo BioTherapeutics LLC brand, product, service and feature names, logos, and slogans are trademarks or registered trademarks of Aptevo BioTherapeutics LLC in the United States and/or other countries.

© 2016 Aptevo Biotherapeutics. All rights reserved. CM-FIX-0093

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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IXINITY® is now brought to you by Aptevo Therapeutics

Laurie Kelley October 15, 2016

This
week, I’m excited to tell you about a new company made of up familiar faces within
the hemophilia B community. The people from Emergent who brought you IXINITY [coagulation
factor IX (recombinant)] are now continuing their tradition of being a different kind of company at Aptevo
Therapeutics.    

Continue reading for more
information about how Aptevo is still committed to putting people with
hemophilia B first.
Introducing
Aptevo Therapeutics
Aptevo
Therapeutics is a new biotech company focused on improving the lives of people
with bleeding disorders and cancer by combining extensive experience with the
drive to advance the science of what’s next.
By
connecting with people across the country to learn about their needs and continuing
to support community outreach programs that enrich peoples’ lives, our primary goal
is to provide high-quality, specialized therapies for people with rare
conditions.
When
it comes to the hemophilia B community, the same people from Emergent who pride
themselves on working for a different kind of company are now part of Aptevo.
So
while you may see a new business card, IXINITY is still the same, and you’ll
still connect with the same people you’ve come to trust.
Visit IXINITY.com to find out more about this
factor IX and the company behind it.

The content of
this post is provided and sponsored by Aptevo Therapeutics.

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. 
You are encouraged to report side effects of prescription drugs to the
Food and Drug Administration. Visit the www.fda.gov/medwatch, or call
1-800-FDA-1088.
 
Aptevo BioTherapeutics LLC, Berwyn, PA
19312

IXINITY [coagulation factor IX (recombinant)] and any and all Aptevo BioTherapeutics LLC brand, product, service and feature names, logos, and
slogans are trademarks or registered trademarks of Aptevo
BioTherapeutics LLC in the United States and/or
other countries.

© 2016 Aptevo Biotherapeutics. All rights reserved. CM-FIX-0070 

FDA Approves a New Factor IX Treatment for Hemophilia B!

Laurie Kelley June 7, 2015

The following is a paid public awareness notice from Emergent BioSolutions about a recently approved FIX treatment.
Earlier this year I spotlighted the Emergent-sponsored mentorship program for teens and adults with hemophilia B (Calling All B’s—Be Part of the Generation IX Project! Or, way back in May 2014, when I shared my admiration for John Taylor, co-founder of the Coalition for Hemophilia B, and his work with Emergent BioSolutions to help bring a new factor IX to market (A Promising Future with Hemophilia B). 
 Well, our era of expanding treatment choices for hemophilia continues with the FDA-approval of Emergent’s IXINITY® [Coagulation Factor IX (Recombinant)] for people with hemophilia B. Now there’s more than one recombinant factor IX for hemophilia B people to rely on. 
More choice means more product differences to consider. That means it’s now more  important than ever to educate ourselves and understand differences among treatments. It also puts more power in the hands of patients to select a treatment that fits their needs and their lifestyles. 
Another great thing about the expansion of treatment choice is that it stresses how important it is for manufacturers to create a more positive treatment experience by offering additional programs that help individual people and the whole hemophilia B community.
More information about IXINITY is below. You can visit the site at IXINITY.com for more on what they call the IXINITY IXperience™. 
 With IXINITY, you define the IXperience. 
Predictable bleed control for your active, unpredictable life. 
• 98% average incremental recovery.Higher recovery may allow lower doses.1* 
• Third-generation† factor IX with no inhibitors developed in a clinical study.1‡ 
• 24-hour half-life for peak factor levels when you need them.1 

Start your FREE trial. Call 1-855-IXINITY (1-855-494-6489) to talk with your IXperience Concierge™. 

    • With your FREE trial of IXINITY, you’ll receive 1 month of free treatment up to 20,000 IU. 

    • After that, if you’re covered by commercial insurance, you may continue to   
    pay nothing out-of-pocket for IXINITY regardless of income. 
The IXINITY Savings Program: You can save up to $12,000 annually.§ 
    • NO income requirements 

    • NO out-of-pocket costs∥ 

    • NO monthly limits 
If you have commercial health insurance, you can save up to $12,000 a year for treatment with no income requirements or caps and no monthly limit over the $12,000 annual maximum. 

*The pharmacokinetics of IXINITY have been evaluated in 32 previously treated patients ≥12 years of age with severe to moderately severe hemophilia B.1 
†Third-generation product is defined by the National Hemophilia Foundation Medical and Scientific Advisory Council as recombinant factor IX (rFIX) produced in Chinese hamster ovary cells; no human or animal plasma-derived proteins are used in the manufacturing process2
‡The efficacy (n=68) and safety (n=77) of IXINITY has been evaluated in a prospective, open-label, uncontrolled, multicenter trial in which previously treated patients (PTPs) between 7 and 64 years of age received IXINITY in either a routine or on-demand regimen.1 
§Program does not cover government healthcare costs (Medicare, Medicaid, and TRICARE) or costs associated with therapy administration. Other restrictions may apply, and a US prescriber and pharmacy are required. Emergent BioSolutions reserves the right to rescind, revoke, or amend this offer without notice. 
∥May depend on your individual health insurance. 
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. 

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. 

References: 1. IXINITY [coagulation factor IX (recombinant)] prescribing information. Winnipeg, MB, Canada; Emergent BioSolutions Inc.; April 2015. 2. National Hemophilia Foundation Medical and Scientific Advisory Council (MASAC). MASAC recommendations concerning products licensed for the treatment of hemophilia and other bleeding disorders. MASAC Document #230. September 2014. 

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)] 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. 
©2015 Emergent BioSolutions Inc. 

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