January 2016


It’s a new year, and a new opportunity to check out one of the latest hemophilia treatments to come on the market – ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated] from Baxalta. Later this year PEN will publish a complete listing of all current products. For now, please read about the newest hemophilia A treatment!

ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated] delivers proven prophylaxis with a simple, twice-weekly dosing schedule. ADYNOVATE allows you to infuse on the same 2 days every week.1

ADYNOVATE is intended for people 12 years and older with hemophilia A for on-demand treatment and control of bleeding episodes and routine prophylaxis to reduce the frequency of bleeding episodes. ADYNOVATE is not used to treat von Willebrand disease.1

You should not use ADYNOVATE if you:

  • Are allergic to mice or hamster protein
  • Are allergic to any ingredients in ADYNOVATE or ADVATE [Antihemophilic Factor (Recombinant)]

Tell your healthcare provider if you are pregnant or breastfeeding because ADYNOVATE may not be right for you.

You may be eligible to receive 8 free sample doses of ADYNOVATE with the Freedom of Choice trial program. The program also provides resources to help you with your hemophilia A treatment. Complete the registration form here.
Want to learn more?

  • Get access to programs for people living with hemophilia regardless of treatment.
  • Download resources designed to help you reach your personal goals including a Goals Worksheet, Bleeds Assessment Sheet, ABR Calculator, and Infusion Log.
  • Visit our FAQs page for helpful questions and answers when considering your hemophilia A treatment.

ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated] Important Information


ADYNOVATE is used on-demand to control bleeding in patients 12 years of age and older with hemophilia A. ADYNOVATE can reduce the number of bleeding episodes when used regularly (prophylaxis).

ADYNOVATE is not used to treat von Willebrand disease.


You should not use ADYNOVATE if you:

  • Are allergic to mice or hamster protein
  • Are allergic to any ingredients in ADYNOVATE or ADVATE [Antihemophilic Factor (Recombinant)]

Tell your healthcare provider if you are pregnant or breastfeeding because ADYNOVATE may not be right for you.

You should tell your healthcare provider if you:

  • Have or have had any 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 mice or hamsters.
  • Have been told that you have inhibitors to factor VIII (because ADYNOVATE may not work for you).

Your body may form inhibitors to Factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, it may stop ADYNOVATE from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to Factor VIII.

You can have an allergic reaction to ADYNOVATE.
Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

The common side effects of ADYNOVATE are headache and nausea. Tell your healthcare provider about any side effects that bother you or do not go away.

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.

Please see the accompanying Patient Labeling. To see the Full Prescribing Information, go to www.ADYNOVATE.com.
1. ADYNOVATE Prescribing Information. Westlake Village, CA: Baxalta US Inc.

Baxalta and Adynovate are trademarks of Baxalta Incorporated.

The content of this blog was provided by Baxalta and its publication is sponsored by Baxalta.

Amazing Gift from Alnylam Pharmaceuticals

We’ve been bringing you news of new products in the pipeline by
pharmaceutical companies. But how about an amazing holiday gift– that is not
a product–from the employees at Alnylam Pharmaceuticals?

Don’t recognize the name? You will. Alnylam is working on a
revolutionary hemophilia product, called ALN-AT3, that would require a
subcutaneous (under the skin) injection. It’s still in clinical trials and
we’ll relate more about its progress in the coming months. Alnylam caught wind
of Save One Life, the nonprofit I founded to help children with bleeding
disorders in developing countries. 
Front row: Laurie Kelley (L), Irene Aquino, Martha
Hopwell (R) and the Alnylam team
 They surprised us with a idea. They hired a live auctioneer,
held a big social event, and invited employees to come and bid on donated items.
Alnylam received over 100 items donated by employees and local businesses in
Cambridge, Massachusetts, their headquarters. 
Hosted at La Laboratoire Cafe Art Science, it sounded like a
wonderful time. In addition to those who attended the actual auction, hundreds
of employees donated money. Some of the unique items donated included: dinners
hosted by executives, weekend vacation homes, homemade baked goods, sports
tickets, handcrafted items made by Alnylam employees.
One employee told me she sponsored a child as a Christmas gift for
her boyfriend. It’s amazing what can be accomplished when people act for the common
Martha Hopewell, Save One Life’s executive director, and I had
visited Alnylam to do a presentation on our work, early in December. The
auction followed. I think the presentation hit home.
The total? Over $50,000! This is an astounding gift for Save One
Life, as we operate with tight budgets. And the very best part is the majority
will go to sponsor 20 children in poverty in several countries for five years.

This is a great model and inspiration for other pharmaceutical
companies in the bleeding disorder business. And an inspiration to us. Thanks
to everyone at Alnylam who donated. Your gift will make a direct difference in
a child’s life for years to come. What better gift than that?

Hey You! Leadership U

Now this is a great program, and one I had some input into many years ago!
Bayer’s Leadership U is a six-week, paid summer internship program starting in June for certain qualified young people with hemophilia. Applications are due Friday, February 12, 2016 and interns will be selected by Friday, March 18, 2016. All housing, travel and related activities will be organized and underwritten by Bayer. I mean, does it get any better? 

Selected interns will:
·        Engage in leadership training and
hands-on business projects
·        Learn how to support the hemophilia
community as a potential future leader
·        Participate in formal training on
communication skills, effective problem solving and leadership
·        Spend time with mentors within
Bayer to gain insights into the inner workings of the various corporate
departments — emphasizing the importance of collaboration
·        Collaborate with local hemophilia
organizations and learn about efforts to support the hemophilia community and partnerships
with business professionals
·        Be responsible for developing a
project that will be presented to Bayer senior management

The program also includes a meeting with healthcare public policy professionals
in Washington D.C., a community advocacy-focused visit to the National
Hemophilia Foundation in New York City, and activities with Bayer’s partners. Incredible.

This is a unique and powerful program that will teach you a tremendous amount of business, nonprofit and advocacy skills. Apply today!

Read about past interns’ experience here!

Great Book I Just Read

The Night of the Grizzlies [Kindle]
Jack Olsen

Master true-crime storyteller Olsen recounts the true tale of a bizarre night in 1967 at Glacier National Park, when a perfect storm of humans, bears, lax policies, and inexperienced rangers came together after grizzlies attacked two 19-year-old girls in one night in separate attacks. Why did they attack? What did the humans do wrong? How did the campers and rangers react after the attacks? It was a wake up call from hell, as those involved realized that just because grizzlies had not attacked a human in 57 years, they are still wild and unpredictable. Edge of the seat thriller, page turner. It is heart-wrenching, sad but powerful. I’m now an official Jack Olsen fan. Four/five stars.

Book It, Baby

When is it time to start educating your little baby about hemophilia? Now! We’ve got what you need–the only books for toddlers on hemophilia.  Chunky style toddler books to introduce him to hemophilia, using colorful images and simple concepts. We are celebrating publishing our tenth book in the series.

And they are free to families! Order here at LA Kelley Communications www.kelleycom.com

Thanks to author Shannon Brush of Texas, who created the concepts for each book! And to Factor Support Network, and to Bayer for funding the series.

My First Factor: Words, 2008
One-word concepts about family and hemophilia.
Sponsored by Factor Support Network: www.factorsupport.com
My First Factor: Week, 2010
Regular infusions helps a toddler stay active.
Brought to you by Bayer HealthCare
My First Factor: Fitness, 2010
Yoga, playing, laughing and good food keep a toddler healthy.
Brought to you by Bayer HealthCare
My First Factor: Infusions, 2011
What are the steps in an infusion? A first look for toddlers.
Sponsored by Factor Support Network: www.factorsupport.com
My First Factor: HTC, 2011
Who does a toddler meet at the HTC?
Sponsored by Factor Support Network: www.factorsupport.com
My First Factor: Joints, 2012
Let’s name all our joints! How do they work?
Brought to you by Bayer HealthCare
Mis primeras palabras del Factor, 2012
A toddler’s first book about hemophilia in Spanish!
Brought to you by Bayer HealthCare
My First Factor: Safety, 2012
How do I stay safe? Let’s see all the ways!
Brought to you by Bayer HealthCare
My First Factor: Camp, 2014
Your toddler will go to camp one day! What are some of the activities he will do?
Brought to you by Bayer HealthCare
My First Factor: Hemophilia, 2012
What is hemophilia? Bruises, owie, factor!
Brought to you by Bayer HealthCare
My First Factor Coloring Book, 2012
Illustrations from previous My First Factor books to keep your toddler busy and happy.
Brought to you by Bayer HealthCare
My First Factor: Self Infusion, 2015
The 10th toddler book in the series My First Factor helps a toddler know that one day, just as he will tie his shoes and dress himself, he will also self-infuse. Colorful illustrations in a chunky board book make this an attractive addition to this series—your child’s first set of hemophilia books.
Brought to you by Bayer HealthCare

Resources for People with Inhibitors

In 2005, when I first sat with US families with inhibitors and
listened—really listened—to their challenges, I was blown away. First, by how
much they struggle: standard factor doesn’t work to clot the blood, different
treatment protocols sometimes fail, children are on prescription painkillers,
with ports and surgeries. Second, by how separated they were from the rest of
the community, shunned almost. “No one understands our challenges,” one mother
told me, “and when we share, they back away.” Hemophilia with inhibitors was
almost like a separate disorder. Third, I was amazed by how stoic and strong
these families are! And even more amazed by the lack of resources for them.
happy to say so much has changed in the US since 2005. We now have inhibitor summits,
financial aid programs, books, and even a camp! All for families with
inhibitors. At long last, our hemophilia community has embraced the inhibitor
families, and we’ve united.
I learned about the struggles of inhibitor families, I vowed to write a comprehensive
guide to dealing with and living with inhibitors—and I did! From the interviews
for Managing Your Child’s Inhibitor
emerged the need for a summer camp. A colleague took that idea and eventually
did just that. What will knowing the needs of the inhibitor community lead you
to do?
by ordering these free resources and enrolling in the patient assistance
programs. Having inhibitors is tough enough, but knowing there are colleagues
and professionals waiting to help you will ease the path forward.
Managing Your Child’s Inhibitor
Laureen A. Kelley and Paul Clement
Written by parents of children with hemophilia, this
comprehensive resource is the first and only book about inhibitors in the
world. From the parents’ and patients’ point of view, it extensively covers
topics such as pain management, surgery, family life, products, and treatment
regimens. Published by LA Kelley Communications, Inc. with funding by an
unrestricted grant from Novo Nordisk.
To order: www.kelleycom.com
The Great Inhibinator!
Chris Perretti Barnes
This richly illustrated storybook introduces a preschool boy
with hemophilia and an inhibitor. He manages his feelings by becoming a
Halloween superhero called the
Great Inhibinator. Written by the mother of a child with
hemophilia and inhibitors. For ages 4–7. Sponsored by Bayer HealthCare and
To order:
Inhibitor Education Summits
The only national educational forums for inhibitor patients
to meet and learn about their rare complication. Offers lectures from experts
in the field and interactive forums with parents and patients. National
Hemophilia Foundation (NHF) provides these summits only for people living with
inhibitors, covering most travel expenses for participants.
Funded through a grant from Novo
Nordisk Inc. and Baxalta Incorporated.
For info: www.hemophilia.org
Inhibitor Family Camp
Camp addresses the unique needs of children with active
inhibitors, and their families. The full weekend of education, support, and fun
is held twice yearly, with camper costs covered. Funding provided by Novo
Nordisk Inc. Camp is designed and operated by Comprehensive Health Education Services.
For info: www.comphealthed.com
Novo Nordisk’s NovoSecure is a comprehensive patient support
program for patients with hemophilia A, hemophilia A or B with inhibitors,
factor VII deficiency, acquired hemophilia, Glanzmann’s thrombasthenia, or
factor XIII deficiency, regardless of product choice. Replacing SevenSECURE®,
NovoSecure allows enrollees to apply for a variety of programs, including
• Competitive scholarship program
• Life coaching with HeroPath™
• Career counseling
• Insurance support
Nordisk also offers product and copay assistance programs to eligible patients
who have been prescribed Novo Nordisk products.
For info: www.mynovosecure.com
1-844-NOVOSEC (1-844-668-6732)
CARE (Coverage, Assistance, Resources,
and Education) to help patients take control of their healthcare needs through
insurance and product assistance. Copay or coinsurance support may be
available to reduce out-of-pocket costs associated with a Baxalta product.
Baxalta Resource Helpline 888-229-8379
To enroll in CARE: 855-322-6282
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