Blog Archive

Sunday, June 26, 2016

A Source of Support and Strength

Trying to “go it alone” is a noble and brave course in the face of adversity, but not always an ideal one, especially if you have a bleeding disorder. There is a huge community filled with caring people, knowledgeable professionals and valuable resources to help you. This week’s blog shares the experience of Casey, who realizes how much he needs the support of the community, especially when it comes to selecting a product that he and his physician believe is right for him and his body’s individual needs.


ALPROLIX is an injectable medicine that is used to help control and prevent bleeding in people with hemophilia B. Hemophilia B is also called congenital Factor IX deficiency.

Your healthcare provider may give you ALPROLIX when you have surgery.

Selected Important Safety Information

Do not use ALPROLIX if you are allergic to ALPROLIX or any of the other ingredients in ALPROLIX.

Please see for the Indications and Important SafetyInformation , as well as the full Prescribing Information.

Growing up, I usually didn’t talk about my hemophilia B. I was the first person in my family to have hemophilia; diagnosed in early childhood. At school, when I would have bleeds, I remember thinking that none of the other kids did. Without a mentor, I kept my emotions to myself, no matter how vulnerable I felt.

My dad gave me my treatments 99% of the time. Always getting the vein on the first stick. However, my mom was a nervous wreck. One time she had to give me a treatment, she tried again and again with no luck. She was in tears. In that moment, she became my motivation to learn how to self-treat. So at the age of 10, I began managing my own hemophilia infusions. It was a liberating feeling. I wasn’t so vulnerable after all.

It was one of my nurses who told me about ALPROLIX. After discussing the risks and benefits with my doctor, he explained that the recommended starting prophy regimens are either 50 IU/kg once weekly, or 100 IU/kg once every 10 days. And that the dosing regimen can be adjusted based on individual response. No two people with hemophilia are alike, so it made sense to me that medication could work differently in everyone. I started on a 10-day schedule, but when I had my labs taken, my doctor told me that I could extend my infusions to once every two weeks. That really fits my busy schedule. Thinking back on my childhood, I never believed infusing every 14 days would be possible.

I didn’t start taking ALPROLIX just for myself. I was also thinking of my two nephews who also have hemophilia. After seeing my experience and talking with their doctors, they started on ALPROLIX, too. I try to help with my nephews when I can. I’ve even occasionally been their caregiver and given them a couple treatments. I make sure they know they have me to look up to if they need advice.

Watching my nephews grow up brings back so many memories of my own childhood. We have a special connection because I understand some of the challenges they face. They have an advantage I didn’t have growing up: a close family member who knows what they’re going through. I can help my nephews in a way no one could help me. My goal is to help them find confidence in themselves and encourage them to have fun being kids.

I hope that by sharing my experiences, I might encourage others to figure out what they have learned from their own experiences and take control over their choices.

Thank you.

To hear from other people living with hemophilia B, check out thesevideos.

Talk to your healthcare team about whether ALPROLIX may be right for you.

This blog was sponsored by Biogen, for educational purposes.

FIX-US-0807    06/2016

Sunday, June 19, 2016

Together we can FACTOR IT FORWARD™

The following is a paid public service announcement. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal personal information (PI) or protected health information (PHI) carelessly or against your will.

Every day, I’m reminded of how much I have to be thankful for. Like the life-changing support I’ve had the privilege to both give and receive within the hemophilia community.

As a parent personally touched by a bleeding disorder, I’ve witnessed first-hand the power a strong support system can provide.

This truly is a community that cares, and I’m proud to be a part of it.

That’s why today, I’m excited to spread the word about a program that embraces the spirit of this community—FACTOR IT FORWARD.

With FACTOR IT FORWARD, the people behind IXINITY® [coagulation factor IX (recombinant)] have partnered with AmeriCares, a non-profit global health organization, to donate IXINITY to people with hemophilia B who can’t afford to be without it right here at home.

And it doesn’t end there. Visit or read on to find out how you can help.

FACTOR IT FORWARD and help lead the way

As part of their commitment to the hemophilia B community, the makers of IXINITY will donate 10% of IXINITY used to nines who need it most here in the U.S. That means:

For every 10 units of IXINITY used, 1 unit is donated to those in need in the United States.

So when you use IXINITY, you help give back to the hemophilia B community. You can try IXINITY for free to see how it works for you. With your IXINITY FREE Trial, you'll receive 1 month of treatment up to 20,000 IU. Learn more about the FREE Trial, download the FREE Trial Form, and talk to your doctor. 

Plus, there are even more ways to join in and help FACTOR IT FORWARD in addition to using IXINITY.  

Get involved today, right now, when you take the giving quiz at You’ll earn points that will contribute to factor donations just by answering a few quick questions.

Or chat with an IXINITY rep at a local chapter event and snap a selfie with your giving pledge. Share the pic on your favorite social media channel to get points just for posting.  

More points equal more factor donated, making it even easier for everyone to do their part!

And since there’s no limit to the number of IUs donated, every IU of IXINITY used and every point earned count toward that end goal: to leave no nine behind.

Visit  today to learn more about the program and how you can participate, and talk to your doctor to find out how you can try IXINITY for free.   


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.

·     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 accompanying full Prescribing Information, including Important Patient Information.

You are encouraged to report side effects of prescription drugs to the Food and Drug Administration. Visit, or call 1-800-FDA-1088.

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)], FACTOR IT FORWARD, 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. CM-FIX-0048

Sunday, June 12, 2016

The Most Powerful Man in America--with Hemophilia No Less

The man who built Fox News into a political media giant has been called the most powerful man in America by President Obama... and also happens to have hemophilia! Roger Ailes. 

During this raucous political season, it's worth looking at the man who helped create the news outlets for conservative voters in America.

The following is a book review by Richard Atwood, our columnist for PEN: Gabriel Sherman's 2014 biography The Loudest Voice in the Room. How the Brilliant, Bombastic Roger Ailes Built Fox News — and Divided the Country is fascinating for its look at this interesting man, who once sat on the National Hemophilia Foundation board of directors.

Roger Eugene Ailes was born on May 15, 1940 in Warren, Ohio. When two, he bit his tongue and bled, leading to a diagnosis of hemophilia. Ailes attended Ohio University where he enrolled in Air Force ROTC for two years, but his eyesight and other physical problems were an issue. He even tried to enlist. Not knowing how long he would live, Ailes did not openly discuss his hemophilia with most of his classmates. His older brother, a physician, linked Ailes’ temper to his medical condition. His parents divorced while he was in college. Ailes married Marjorie White in 1960. Beginning in 1961, he worked as a producer for The Mike Douglas Show at a television station in Cleveland. Ailes kept his hemophilia a secret. When the show moved to Philadelphia in 1966, Ailes was its executive producer. He treated politics as entertainment. After an interview with Richard Nixon in 1968, Ailes worked as a media advisor, or image consultant, for Nixon’s presidential campaign before being fired by the RNC in 1970. While separated from his wife in 1972, Ailes was agent for, and romantically involved with, the actress Kelly Garrett. As a Broadway producer in the 1970s, Ailes had both successes, such as Hot l Baltimore, and several flops. Ailes took risks with sky diving, tearing his ankle ligaments, while also becoming paranoid about his physical safety. He had brooding moods, increased weight and pent up anger. He demonstrated his conservative political beliefs when he was a consultant and news director of TVN (Television News Inc) for two years before it shut down in 1975. Ailes broke up with Garrett in 1977, then became romantically involved with Norma Ferrer who had two children. He divorced White that year and married Ferrer in 1981. 

Ailes was most successful as a political consultant from 1980 to 1986. After a fist fight, he had swollen hands. He was known to make sexual approaches to female employees when he was executive producer for the Tomorrow Show with Tom Snyder. His father died of Alzheimer’s in 1983, and his weight ballooned again. Ailes published his book of self-help wisdom, You Are the Message, in 1988. He became an executive producer for Rush Limbaugh in both radio and television. He worked for 28 months at CNBC, beginning in 1993, and learned how to turn news into entertainment. He moved to the America’s Talking cable channel in 1994. He divorced Ferrer in 1995, this time a more expensive change. Ailes now walked with a limp. He moved to MSNBC in 1995, and left a year later. Roger Murdoch hired Ailes in 1996 to be chairman and CEO of Fox News. Ailes’ book became the cable channel’s sacred text. His fear for his personal safety increased. He married Beth Tilson, a divorced producer whom he met at CNBC. Ailes’ son, Zachary Joseph Jackson Ailes, was born on January 1, 2000. Ailes hired Bill O’Reilly, his brightest star. Fox News passed CNN for good in ratings in 2002 after the Monica Lewinsky affair in 1998 and the 2000 elections.  Ailes hired Glenn Beck from CNN in 2008 and supported the Tea Party in 2009. Many conservative politicians became employees of Fox News. 

After building a mansion in Garrison, New York, 46 miles north of NYC, Ailes bought the Putnam County News & Recorder in 1988, installed his wife as editor, and changed the local paper to reflect the conservative views of Fox News. Ailes continued to demonstrate his fear for personal safety and his paranoia, and he shared his conspiratorial worldview with his wife. Ailes also was in charge of Fox Business Network that was launched in 2007. 

Ailes remembered his father’s lessons and had a ‘Rosebud’ story. “The cruelest lesson Roger would speak of occurred in the bedroom Roger shared with his brother. Roger was standing on the top bunk. His father opened his arms wide and smiled.
   “Jump Roger, jump,” he said.
   Roger leapt off the bed into the air toward his arms. But Robert took a step back. His son fell flat on the floor. As he looked up, Robert leaned down and picked him up. “Don’t ever trust anybody,” he said.” (p. 7).

This biography covers Ailes’ childhood rather quickly, but his hemophilia is stressed more often during his younger years. Yet a specific diagnosis and family history of hemophilia is never provided. The book is more an analysis of Fox News than a life story of Ailes for his older adult years. There are 6 pages for A Note on Sources, 98 pages of Notes, 13 pages for Selected Bibliography, and 20 pages for the Index. Hemophilia is cited 10 times in the text, and is listed twice in the Index, under ‘Ailes, Roger’ and by itself. Oddly, there are no photographs. The author interviewed 614 individuals in addition to referencing the written sources. Ailes was not subjected to a psychological analysis, yet he was frequently described as impulsive, paranoid, aggressive, and a ruthless competitor, all influenced by his ego and temper. He was also quite successful. The author, who never received permission to interview Ailes, is a journalist and editor living in New York City with his wife.

It's worth Googling Ailes to read about his work, his attitudes and thoughts about the political candidates; a fascinating man with hemophilia!

Another book read by Richard, but not as good, is Zev Chafets's 2013 book Roger Ailes: Off Camera. New York, NY: Sentinel. 258 pages.

Sunday, June 05, 2016

Standing on the Shoulders of Giants

Dr. Olaf Walter reviews Octapharma's history
I was privileged this week to be invited to a special scientific symposium in Heidelberg, Germany, sponsored by Octapharma. Octapharma is the largest privately owned plasma manufacturer in the world. It recently launched  the first and only fourth generation recombinant factor VIII (FVIII)  produced in a human cell line without any chemical modification or protein fusion, NUWIQ®, now available in the US. This unique product is important as it is hoped that a recombinant product that originates from a human cell line might have low immunogenicity—in other words, it might not trigger an inhibitor, which is the greatest complication of hemophilia.

Octapharma was founded in 1983 by Wolfgang Marguerre; the name comes from the Greek for the word "eight." Octapharma manufactured the world's first plasma-derived FVIII that employed a viral inactivation step using solvent-detergent. I cannot overestimate how important this process is. My own son used product initially that had no SD or pasteurization and miraculously escaped HIV and hepatitis C infection.
Octapharma now serves patients in 105 countries with 6,200 employees in 32 countries, of which half are in the US, the largest market for hemophilia products.

Laurie Kelley with Marcia Boyle,
executive director of the IDF
The Saturday symposium featured speakers from the US, Denmark, Canada, and Germany, including our own Dr. Craig Kessler from Georgetown University. While all the speakers were excellent, I learned a tremendous amount from Dr. Roger Kobayashi, of UCLA School of Medicine, who is an immunologist. Patients with immune deficiency share so many of the same concerns as those with hemophilia. Our need for constant products, safe products, easy to administer and affordable. Dr. Kobayashi reminded us that physicians like him, and companies like Octapharma, "stand on the shoulders of giants"--those researchers who have come before us. He told us that the very first Nobel Prize was awarded to a doctor who discovered gamma globulins, proteins that can be used commercially to treat infections in those with malfunctioning immune systems. He described the pain patients felt years ago when intramuscular injection were given; the poor children! They could not walk for days. Finally, intravenous infusions were manufactured and successfully treated patients with immune deficiency. While he spoke, I had the honor to be sitting next to Marcia Boyle, the executive director of the Immune Deficiency Foundation, an exceptional leader who for 32 years has provided education, advocacy and help to those with immune deficiency in the US. Indeed, Dr. Kobayashi mentioned her three times in his speech!

We learned about Alzheimer’s (discovered here in Germany), and Octapharma’s research into treating this insidious disease, the fifth leading cause of the death in the US. There is currently no treatment and after hearing Dr. Shawn Kile’s excellent presentation, I pray that this company discovers a treatment soon. I recently witnessed the devastating effects of this disease in a dear elderly friend. It strips a person of their very identify and almost of their humanity. How long will we wait for a treatment to slow it or stop its progression? Companies like Octapharma work daily to answer this.

But I was most interested in Dr. Craig Kessler’s speech on personalized prophylaxis. Dr. Kessler described how half-lives differ dramatically among patients and only a pharmacokinetic (PK) test can determine each person’s half-life. That’s the number one place to start with a proper treatment regimen. In the “old” days, like when we were raising a child with hemophilia, we dosed by weight and bleed severity only. Now we realize this is not enough. Each person will have a different half-life. He displayed one slide that showed 66 patients with half-lives varying up almost 5 hours. Once you know your half-life, you can find the proper prophylaxis treatment. This might include looking through the vast array of factor products. Dr. Kessler reminded us that patients want 1) reduced number of infusions, 2) reduced inhibitor development and 3) to adopt prophy to their own lifestyle.

Dr. Kessler reported that NUWIQ® is Octapharma’s new fourth generation recombinant FVIII from a human cell line—the first such product. Because it is entirely from humans, and not animal cell lines, this could potentially reduce the rate of inhibitor development and avoid possible allergic reactions, and allow personalized prophylaxis with fewer infusions.  He described several clinical studies with NUWIQ®, including one with 135 previously treated patients, none of whom developed an inhibitor. We also know that inhibitors can develop in about 30% of previously untreated patients with factor VIII deficiency, usually within 20 exposure days. Octapharma designed NUWIQ® to be less immunogenic by using a human cell line. I will want to follow clinical studies closely on the product to see what else they uncover regarding this.

Laurie Kelley with Octapharma friends

I was also interested to hear from Dr. Olaf Walter, senior vice president, and MC for the day, that Octapharma is conducting research for a  subcutaneous (under the skin) delivery of factor. I know of two other companies that are also working on this, and it will again be interesting to watch developments. As we write in our May issue of PEN, this is the most exciting time in hemophilia!

The symposium closed with a delicious lunch and then a black tie gala that evening at the Heidelberg Castle. It was not only the 33rd anniversary of Octapharma, but also the 75th birthday of founder and chairman Wolfgang Marguerre. I have a special indebtedness to Wolfgang, as he is Save One Life’s largest supporter and also sponsor the largest number of children, 120.

Laurie Kelley with Octapharma Founder and Chairman
and Save One Life's leading donor Wolfgang Marguerre

The evening was dazzling, with over 40,000 flowers, 500 guests including Octapharma employees from around the world, 150 wait staff, at least two high quality bands, delicious food and drink. This was a wonderful way to celebrate the accomplishments of this company and its indefatigable and brilliant founder. I met up with my hemophilia colleagues, including three of our top sponsors for Save One Life: Wolfgang, and also Patrick Schmidt, CEO of FFF Enterprises, Neil Herson, president of ASD Healthcare, and Paolo Marcucci of Kedrion S.p.A.

Together, all three sponsor about 280 children with hemophilia in poverty annually. Many of the other attendees also sponsor children, including hemo-mom and Octapharma employee Sherri Rojhani, who just sponsored a child in honor of Wolfgang Marguerre’s birthday.

The evening ended with spectacular fireworks, accompanied by songs representing many countries, but the final song was a favorite of mine, the Irish pub-song The Wild Rover.

When I thanked Wolfgang for such a lovely evening, I told him he needed to manufacture a new product—his energy! I want an infusion of whatever he has to keep me going strong at 75 to do the humanitarian work I love to do. If only!

Thanks to Octapharma for a fascinating symposium, such amazing festivities, and for all its support for Save One Life.