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Discover the Brand New LivingWithHemophilia.com!

I made a pledge this year to get all of LA Kelley Communications’ books updated and back in circulation, because I love educating people about hemophilia. And information needs to be updated in this ever-changing bleeding disorder community. Please check out Bayer’s newly revised website LivingwithHemophilia.com to learn more about hemophilia and to learn about its highly effective and successful leadership program, Leadership U.  

The following content is sponsored by Bayer.

Discover the Brand New LivingWithHemophilia.com!

There is no community quite like the hemophilia community—which is why Bayer set out to create an online destination unlike any other.

Introducing the all-new LivingWithHemophilia.com, reinvented and reimagined to engage patients and caregivers like never before. This is where you’ll get the scoop on everything from the role of genetics, to information on pain management, to tips for traveling—and all things in between—with content that’s engaging, easy-to-find and relevant to you.

It’s the real talk you want, served up the way you want it. For example, the “Living With Hemophilia On Your Own Terms” video series is designed to help you understand often confusing terminology related to hemophilia—so you can feel more informed than ever.

LivingWithHemophilia.com is also home for information on Bayer Leadership U, the summer internship program for college-aged students touched by hemophilia. For more than a decade, Bayer has offered motivated, young individuals a paid, six-week internship at their U.S. headquarters in New Jersey. Leadership U interns participate in activities that sharpen leadership skills and apply these skills in a real-world corporate setting through a variety of independent projects.

For more information on the internship program, visit www.LivingWithHemophilia.com/lead. The application deadline has been extended and will be open until Wednesday, February 15, 2017.

So, that’s the story behind the all-new LivingWithHemophilia.com. Make sure you check it out!

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.

Adrenaline Junkies, Take a Hike

At Thanksgiving last week, my family gathered for dinner and in swapping motorcycle and adventure sport stories with four of my six brothers, someone remarked about the “adrenaline junkies” in the Morrow family (my maiden name). True, but I reflected our hemophilia community has a few of those as well. This summer we watched Barry Haarde bicycle 3.677 miles across  America to raise funds for Save One Life, my nonprofit that supports kids with hemophilia in developing countries. And we saw Eric Hill and Jeff Salantai of BioRx scale Pico Duarte, the highest peak in the Caribbean, to raise money for the Dominican Hemophilia Camp, which Save One Life supports.

And last year I summited Mt. Kilimanjaro with eight others, including Eric and Jeff, to raise over $66,000 for Save One Life. Now, Barry and I just jumped our of a plane last week at 18,000 feet, but we didn’ raise any money–it’s an idea, though!
But you don’t have to be an adrenaline junkie to help support a good cause. Try walking!
Bayer has just announced the winners of its virtual walk, a successful fundraising efforts to help hemophilia chapters and–I am grateful and proud to say– also Save One Life. (www.saveonelife.net)  See below, register for next time and then… take a hike!
The 2nd Annual Virtual Walk for Hemophilia is  proud to announce the top 5 participating local National Hemophilia Foundation (NHF) chapters who rallied the most virtual walkers!
First Place with $15,000 in sponsorship funds:
Arizona Hemophilia Association
Second Place with $10,000 in sponsorship funds:
Bleeding Disorders Alliance Illinois
Third Place with $5,000 in sponsorship funds:
Texas Central Hemophilia Association
Fourth Place with $2,500 in sponsorship funds:
Nevada Chapter, National Hemophilia Foundation
Fifth Place with $1,000 in sponsorship funds:
Nebraska Chapter, National Hemophilia Foundation
We, at Bayer, are delighted to provide these chapters with sponsorship funds to continue their hard work in supporting the bleeding disorder community.
Furthermore, we are privileged to present the National Office of the NHF in New York with $30,000 in sponsorship funds to assist them in continuing to improve and enhance the lives of those who live with bleeding disorders. And we were able to provide $7,000 in sponsorship funds to Save One Life, a non profit organization that offers the opportunity to sponsor a child or adult with a bleeding disorder in a developing country.
Thank you again for making this Virtual Walk possible!
©2012 Bayer HealthCare Pharmaceuticals, Inc. All rights reserved.
BAYER and the Bayer Cross are registered trademarks of Bayer.
4/12 KN09001812

Product and Program Updates

Even while we wait for new products to come in the hemophilia pipeline, there are improvements being made all the time with our current products. Here are two changes you might need to know about.

From Bayer: Bayer’s Factor Solutions patient support now includes a Helpline to give hemophilia A patients and caregivers a personalized point of contact for getting information on insurance, patient assistance and government assistance programs. This is for Kogenate FS users, and offers: coverage, coding, reimbursement and claim issues, verifying patient insurance benefits, understanding healthcare reform insurance changes, assessing new insurance and alternate funding sources, understanding Explanation of Benefits (EOB) statements, and determining eligibility for assistance programs.

Factor Solutions case specialists, including Spanish-speaking specialists, are specially trained and understand the unique needs of the hemophilia A community. Contact them at 1-800-288-8374 for more information.

From Pfizer: There is now a 3000 IU dose of BeneFIX available for hemophilia B patients. Pfizer Hemophilia is the first to offer this new dosage strength for hemophilia B patients. Higher doses may reduce the number of vials needed per infusion, save space at a patient’s home or on the go and, may have less waste for disposal. Learn more at www.benefix.com.

I’ll try to provide other product changes and improvements as they come in!

Great Book I Just Read
Kidnapped by Robert Louis Stevenson (Kindle version)

This is one of my favorite books from childhood. What a joy to read this historical fiction classic again, and on my Kindle! It’s 1752, Scotland, and following his father’s death, young David Balfour heads out with a letter of introduction to meet his uncle Ebenezer at the House of Shaw, which he imagines to be a great estate. Hoping for wealth and a new beginning, he instead meets a miserly old man and crumbling mansion. David soon learns that there are many secrets at Shaws, and when he tries to find out the true owner of the estate, his uncle tricks him into town, and then lures him onto a ship, where he is kidnapped to be an indentured servant in America. Rounding the north of Scotland one night, the ship crashes into another: the crew picks up a mysterious man in French dress with a thick money belt, real-life historical figure Alan Breck Stewart, a Jacobite. David overhears the captain plotting to kill Alan, and tells Alan. Together David and Alan fight off the crew of the ship, which then crashes and sinks. David survives, and wanders for days alone in the Highlands, before finding help and eventually is reunited with Alan. When they are both framed for the real-life death of Colin Roy Campbell, they flee into the Highlands and endure great suffering and starvation as they try to reach Edinburgh, for Alan wants to help David get his inheritance back, and David wants to help Alan return safely to France. The book is crackling with adventure, with great dialogue and unforgettable characters. The story will tell you about the politics and history of Scotland in the 1700s. Interesting to read, due to the Scottish dialect and strange words–making the Kindle or iPad invaluable as you can easily click on each word’s meaning. The 1960 Disney movie is faithful to the book, staring Peter Finch as Alan Breck, and wonderfully done. Five/five stars.

Infuse Less, Play More


I spent this weekend in Newport, Rhode Island to attend the Bayer Multidisciplinary Board meeting. This is a group of representatives from the community (from home care, NHF chapters, manager care, pharma, HTCs, consumers) who get together twice a year and brainstorm, share and offer opinions to the marketing team at Bayer HealthCare. Most manufacturers have these, and even some home care companies. These forums are a great way to learn what is happening in the community in an informal lieu, with intelligent and proactive individuals.

Now some of what we discussed is confidential, but the most exciting news is not confidential. It’s about the clinical studies for the longer lasting factor VIII product. The study is moving into phase II, with 250 patients from many countries participating. Patients are treated with a factor product each week in this study, but the study is double-blinded, which means that neither the physician nor the patient knows whether they are getting regular factor or the longer acting factor. This is the largest clinical study in hemophilia history, I believe. Results are promising: some day I believe we will have a factor product that can be infused once a week, but keep factor levels high the entire week, eliminating the need for three time a week infusions.

Bad News: Tomy McNulty, chief clinical officer of Novologix, a consulting firm, updated us on the payer side of the reimbursement crisis. He affirmed what we announced back in 2004: the system of reimbursement for hemophilia products has changed permanently; home care will continue to consolidate; hemophilia consumers will no longer have complete choice of product, physician or provider. Of the three, provider choice is of the least concern to the payer. In other words, you’ll use payer-designated home care X and like it. We’ve already seen two home care companies go out of business: who next?

Good news: Bayer unveiled for us a new website called “Living Beyond Hemophilia,” for teens and young patients with hemophilia to help them through their transition to adulthood. It’s an excellent site, with a career assessment form, thought provoking questions and answers) about how to prepare for a first job interview, how to prepare for college, and even internships that may be of interest. Having a 21-year-old still in college an struggling to live on his own, this is the kind of site he can go to again and again to get tips on being prepared for what life brings. Check it out http://www.livingbeyondhemophilia.com/

Great Book I Just Read: The Picture of Dorian Gray, by Oscar Wilde
I am ashamed to say I never read anything by Wilde other than his pithy quotations. (His last words on his death bed are rumored to be: “Either these curtains go, or I go.”) This is the only book he ever wrote, and it is masterpiece. Considered one of the last books of the Gothic horror age, it is also a scathing summation of upper crust British society, which in the 1800s is obsessed with appearances–the appearance of being wealthy, beautiful, talented. The book asks, and answers: What does a life of pure hedonism and egoism do to the soul?

Dorian Gray is by all accounts a stunningly handsome man, from a wealthy family, and yet innocent at heart. Noting his handsome face, an artist creates his portrait, a chillingly accurate representation. With constant adoration of it and of Dorian himself from the adult men, Dorian eventually wishes that he always look like his youthful appearance in the portrait, and never age. In a Faustian bargain, the wish is granted. Dorian remains eternally youthful, while the portrait ages, and not just ages, but mirrors the deterioration of his soul as Dorian embraces a life of extreme and callous hedonism. Just like every person with a dark secret, he hides his portrait from all eyes. But this secret eats away at his humanity. Without any physical or visible consequences of his wretched lifestyle, he continues to sample every vice there is, earning the condemnation of his friends and of society, who yet still envy him his eternal beauty! Eventually, his lifestyle impacts others deeply (there’s a murder, suicide, etc), and finally causes him to ponder what he has become. No matter how much he hides his wanton lifestyle and feelings, the portrait reflects greed, suffering, hatred, extreme consumption, lack of purpose, narcissism, and amorality. The portrait holds an iron grip on his soul. Wilde is an interesting writer: while the dialogue appears to ramble at times, and there is a lot of overt melodrama, Wilde is, after all, a playwrite. It’s Wilde’s command of the English language that is pure joy: razor sharp, line after line; I found myself ingesting his richly nourishing ideas, strategically placed words and flowing prose. Four stars!

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