June 2015

Share Your Story!

Laurie Kelley June 29, 2015
“After nourishment, shelter and companionship, stories are the thing we need most in the world.” 
As a writer, I tend to agree! Whether we are imparting facts or weaving a tale, we seem to learn best when we hear it all as a story. Stories are especially important for families dealing with bleeding disorders. We all want to hear the Introduction (Beginning), the Conflict and the Climax (Middle), and the Outcome (End). And we want to hear lots of stories because our own story will mirror one someday.
Grifols, manufacturers of plasma-derived clotting factors, is offering a chance for you to tell your story, to help other families who have hemophilia or von Willebrand Disease. 
Visit www.mybleedingdisorder.com to share your experience and provide inspiration and motivation to others seeking ways to better manage their bleeding disorder.
Your story may be featured on the newly launched consumer website , and may also be selected to be shown in the Grifols booth at the National Hemophilia Foundation conference in Dallas, Texas in August!
As I always advise, please read the privacy notice on the site before sharing.
This is a paid public awareness notice from Griflols.

Great Book I Just Read

Anthem by Ayn Rand [Kindle]

If you want to know what the legendary Ayn Rand, who grew up in Stalinist Russia, believes in a nutshell, read this novella. In this futuristic story, people’s names are replaced by genres and numbers (Liberty 5-3000), humanity has all individuality stripped away, and a collective society emerges. The word “I” is banished, even when referring to oneself. The narrator knows he is different but is not sure how or why. He knows he is not meant to be a street sweeper, as the Elders dictate to him. He has no parents, no family–no one does. His life is controlled by Elders from beginning to the day he dies. He refers to himself as “we,” and is raised to serve the common needs of all. Until one day he discovers an underground place where electricity works–apparently a subway or city from before the end of days. Excited, he shows the Elders but is shunned and shamed. He decides to return to the place, try to make sense of what has happened to mankind and why such technology is being ignored, to improve the lot of the common worker. In the process, he discovers himself, love, his convictions and a future as an individual. A very short read, with powerful and rich ideas about individualism to think about.  Five/five stars.

Another Graduation, Another World

Laurie Kelley June 22, 2015
 
 
Last week we posted about Rose Bender, a young lady with hemophilia (rare in itself!) who was accepted to Ivy League schools and who has so far lead a rich and rewarding life, supported by family, filled with promise.
Another young person who has graduated is Kishroy Forde, about the same age as Rose but from an entirely different world. He lives on Mayreau Island, in the middle of the Caribbean Sea, accessible only by boat. From Boston or New York? You’d have to take three planes and a chartered boat to get to his home. Kishroy at work
 
Kishroy could not have grown up in a more different world than Rose. Isolated on this remote island, which only has had electricity for the past 10 years, living in a house without a bathroom, no immediate access to medical care and certainly no factor. Kishroy’s father is a simple fisherman, earning about $40 a month. His little brother with hemophilia, Kishron, died at age 11 from a GI bled. His mother soon after abandoned the family to go to a nearby island and start another family.
 
Kishroy struggled to stay in school due to his bleeds and lack of factor. He has to take a boat to school daily! Project SHARE shipped him factor from time to time, to keep him alive, and healthy enough to finish school. Thank God for FedEx!
 
I visited Kishroy on Mayreau Island last February, after not seeing him since he was 6. I was shocked to see, at the docks when I landed, a 140 lb, 6 foot 2 inch beanpole of a young man greet me. Still soft-spoken and gentle, harboring no anger or bitterness at his lot in life, he embraced me and thanked me for the support from our company.
 
And he surprised me. On an island of only 300 people, most of whom live and die there, he told me he wanted to go to technical school and get an electrical engineering degree. I promise to foot the bill if he could register and study hard. 
 
He did. Without family support, with few options in life, with hemophilia bleeds hobbling him (there are no wheelchairs or crutches even on the island) he did it. I am as proud of Kishroy as I am of Rose. Two young people from different worlds, who both value education and are determined to be independent, contributing members of their very different societies, despite the same bleeding disorder.
 
Fire is the test of gold, adversity of strong men. Seneca
 
(Thanks to John Parler for sponsoring Kishroy through Save One Life!)
 
 

 

Good Book I Just Read
How to Be a Great Boss
Jeffrey J. Fox
 
This quick read covers how to be more effective at getting people you work with or manage to be more productive and responsive to you, and how to be better and more effective with your customers. Bottom line? Your customers are your lifeline; they provide the revenues. Treat them like god. Teach your staff to treat them like god. Be attentive, caring, give them what they need. The boss sets the tone for the company, especially regarding how customers will be treated. Three out of five stars.

Rose: A Girl with Hemophilia Overcomes, Achieves, Succeeds!

Laurie Kelley June 15, 2015

It’s graduation time! I am off to two graduation parties this month–one for a young man who I’ve known since age 4. He’s like my own son. And here is a story about a wonderful young lady with hemophilia, who I have known about since she was young, too. This is written by her mother, Shari. What an honor to know these remarkable young people as they become our future leaders, in hemophilia, and in the greater world.—Laurie

Harvard, Princeton, Yale, MIT and Columbia— all offered admission to my daughter Rose for their Class of 2019. A true miracle
considering back in 1998 it wasn’t known if she would make it through the night.

Born healthy on May 15, 1997, baby Rose
lay bleeding to death in the hematology/oncology wing at North Shore Manhasset,
New York, at the tender age of 9 months. She required a whole blood transfusion,
fresh frozen plasma and cryoprecipitate in order to save her life while her stunned
parents heard the puzzling diagnosis: hemophilia.
Throughout elementary and middle school,
Rose would miss many days due to bleeds and complications. Rose was also diagnosed
with ulcerative colitis in the beginning of her high school years. Despite having
two serious chronic illnesses, Rose never complained or requested special treatment.
She flourished academically and socially, was recognized as a Siemens semi-finalist
and was voted second-runner up Homecoming queen by her peers.
Rose achieved a perfect 36 ACT score as
well perfect scores on all her SAT II’s and 5’s on all her AP exams. Her outstanding
GPA led Rose to be named Valedictorian of Half Hollow Hills High School West in
Dix Hills where she was recently awarded the “Golden H” award, the school’s top
honor.
Rose didn’t let her illnesses stop her
from being active in extracurricular activities; she was manager of the fencing
team and editor of the school yearbook, and led the school’s record-breaking blood
drive. Somehow Rose also made the time to help others, taking an active fundraising
role in NYC Hemophilia Walk and the local CCFA Walk. Rose has spoken at numerous
New York City Hemophilia Chapter events, and has also shared her story at multiple
Long Island Blood Services events. After being fencing manager for three years,
Rose got medical clearance to finally fence on the strip, and she won her first
varsity bout.
Rose’s achievements would be impressive for any young woman.
When you factor in a chronic and life- threatening bleeding disorder and an often-debilitating
lifelong gastrointestinal disease, it is downright inspiring. Rose has selected
to attend Yale University in the fall, where she is sure to make her mark. She was
recently featured on a piece on ABC Newschannel 7 here in New York.

By Shari Bender

From me again: Congratulations to Rose and her family! Her achievements
are better understood in perspective when you consider the talent and drive of
her parents, who have long been active in the hemophilia community, both nationally
and locally!
Good Book I Just Read
How to Become a Rainmaker
Jeffrey J. Fox
This quick read covers a lot of ground for business people who want to bring in more revenue. A bit dated now, it still contains wise advise for improving your skills in the field, with customers and staff. Bottom line? Cherish your customers, never take them for granted and know that anyone could be or become your customer. Contains “Killer Sales Questions” and tips for wining/dining and winning over customers. Three out of five stars.

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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