It was a rainy weekend in Boston, and I was so sad I couldn’t join the Hemophilia Walk in Boston yesterday. But, I’m happy to say that New England Hemophilia Association surpassed their goal of $100,000! And this all happened in a downpour!
There are more walks happening all across the country to help raise money for hemophilia, for the local organizations who help us in our own states, for the National Hemophilia Foundation that lobbies for us and provides research, and even Save One Life, the nonprofit I founded, may benefit!
If you want to help kids with hemophilia, especially those suffering in poverty overseas, here’s how!
Bayer is sponsoring “Virtual Walks” throughout the year, from the comfort of your own home, and Save One Life, which now sponsors over 1,000 children and young adults with hemophilia in developing countries, may benefit directly from it!
Bayer is proud to announce the 2nd Annual Bayer Virtual Walk for Hemophilia! Committed to helping support those who live with bleeding disorders, Bayer, through the Virtual Walk, is offering sponsorship funds to the National Hemophilia Foundation* (NHF), its local participating chapters, and to Save One Life (www.saveonelife.net). This year, the top 5 participating local NHF chapters with the most virtual walkers will receive sponsorship funds, as follows:
First Place: $15,000 Second Place: $10,000 Third Place: $5,000 Fourth Place: $2,500
Bayer will also award up to $30,000 to the National Office of the NHF in New York City, and up to $7,000 to Save One Life.
If your local chapter is not one of the participating chapters in this year’s Virtual Walk, you can still be involved! Just choose to walk for the National Office of the NHF. You can then share your virtual walker on Facebook and invite everyone you know.
Together we will help raise awareness for bleeding disorders across the country!
(My two cents: And help directly those suffering in countries where no factor is available)
Great Book I Just Read
The Invisible Man by H.G. Wells
A crazed, young scientist named Griffin has discovered the means to make himself invisible. With the power that
comes from not being detected (or so he thinks) he unleashes a reign of terror in England. He begins to torment unsuspecting people, stealing, ransacking, sometimes in a sadistic way. This is a very dark novel, extremely well written of course—it is by the Master and Founder of Science Fiction himself. Griffin eventually tracks down colleague Kemp, shares his plans to dominate the world, and his malicious joy terrifies Kemp.
First published in 1897, The Invisible Man retains its thrilling plot, pace and characters even now. It’s not as good as War of the Worlds or The Time Machine, but it’s short enough to be read in a single sitting, is stimulating, entertaining and sharp. The science behind how he becomes invisible is great! The pace of the book pick up at the end to a great climax. Four/five stars.
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.
You may have heard that the hemophilia community is a bit worried about developing leaders. Our generation is getting “old,” and has fought our many battles, and continue to fight on the insurance front. We need young people with talent, ambition, compassion and vision to carry the torch in the future.
But are we victims of our own success?
We’ve made life good for the new generation of kids with hemophilia, and as expected, they are having good lives–and disappearing from our radar screen. We need them to come back, to pitch in, to help, to lead.
To address this, Bayer developed a unique program in our community to train young people to think about careers in hemophilia, or at the very least, to give back through volunteering. Bayer HealthCare offers the Bayer Hemophilia Leadership Development Program (BHLDP), and expanded it this year by adding a community element to the internship experience. The 2012 interns selected to participate in this prestigious program will spend five weeks of the eight-week program at a local hemophilia organization.
The company is currently seeking applicants who are attending college and have been touched by hemophilia. Those interested have until Monday, March 12th to apply for the program, which runs from June 18th-August 9th. Participating interns will engage in leadership training, hands on business projects, marketing and communications strategies, and help support the local hemophilia community. Additional details and the application can be found at www.livingbeyondhemophilia.com/intern.
Of the many organizations that applied to participate, four chapters were chosen to mentor and manage an intern. They are the Arizona Hemophilia Association, Bleeding Disorders Alliance Illinois, Hemophilia Foundation of Upstate New York – Rochester and Texas Central Hemophilia Association.
The 2012 program begins with a two-week orientation at Bayer HealthCare’s U.S. headquarters in Wayne, NJ, where the interns will receive training on communications, problem solving and leadership skills as well as work with people in a number of departments to gain insights into how various parts of the company operate. Interns will spend the following five weeks at the selected hemophilia organization, where they will gain first-hand knowledge about the work done on a local level and engage in projects building on the skills developed earlier in the program. During the final week at Bayer, the interns will report on their experience and present a project developed with their local chapter.
Bayer established the Hemophilia Leadership Development Program in 2007. Since that time, many program participants have become more active hemophilia advocates and have gone on to careers serving the community, government and industry.
This is a fantastic opportunity. If you know of a young person with hemophilia who has leadership potential, please have them apply today!
Great Book I Just Read The Killer of Little Shepherds: A True Crime Story and the Birth of Forensic Science by Douglas Starr (Kindle edition)
Starr never fails to engage. From 1894 until 1897 in the countryside of France, Joseph Vacher, a vagabond and discharged military enlistee, began a bizarre killing spree, from young women to little shepherd boys. Dispatching his victims rapidly, mutilating or violating them, and moving on immediately, he became a killing machine that terrorized France and baffled police. Forensic science was nearly nonexistent, and police imprisoned innocent people based on hearsay. Meanwhile, Dr. Alexandre Lacassagne, France’s leading expert in legal medicine and professor at the University of Lyon, dedicated himself to the case and in the process advanced forensic science. Ultimately, this became one of the first cases of determining what is legal insanity, as Vacher, once apprehended, became his own counsel in effect and pushed to be declared insane. A battle ensues between Vacher and Lacassagne, which would have repercussions for decades to come. Fantastic story, well written, and enlightening. Four/five stars.
While a winter storm gathered back on the east coast, I was in Chicago for a meeting with the Bayer Multidisciplinary Board Meeting. This is a group of thought leaders from the hemophilia community who meet once a year to discuss current trends in treatment, products and insurance, and predictions of what the community will look like and need in five to ten years.
I was unable to attend last year’s meeting at this time, so it was very nice to be back with the group, all of whom I knew. The team includes top hematologists, insurance experts, some adult patients, and homecare, distributor and nonprofit representatives. Of course, the hot topic is insurance! How are payers affecting the decisions being made now on treatment choices and product pipeline? For example, it’s already happening that payers are dictating brand choices in some places, said one participant. The impending merger of Express Scripts and Medco, two of the three largest PBMs, will radically upset the hemophilia apple cart and change the hemophilia landscape forever. Exactly how that will change was open to much speculation.
The most extreme prediction involved the fate of HTCs. One prediction is that in ten years there will only be half the current number of HTCs operating. There will be fewer hematologists. “We are victim of our own success,” expressed one doctor. Hemophilia has become so manageable that patients are less dependent on the HTCs. With cuts in federal funding, expect to see many close their doors forever. I saw this myself in New Mexico, where the HTC is struggling.
The bleak forecasts were accompanied by good news: treatments are better than ever, allowing a more normal life. Newer products, greater choice and who knows, maybe even cheaper products. Stay tuned–in 2012 I will provide a forecast by our community experts on what you can expect in the next ten years. It’s going to be a roller coaster ride, folks.
Interesting Book I Just Read Sing You Home Jodi Picoult
I normally don’t read fiction unless it’s a classic. This book was given to me as a gift. It tackles several hot buttons: gay rights, surrogate pregnancies, Christian fundamentalism. A music therapist—Zoe—finds herself childless at age 40, after a stillbirth. After her husband Max leaves her, Zoe eventually falls in love—with female counselor Vanessa. Eventually they wed in Massachusetts, my home state, and the first to make same-sex weddings legal.
Max, a recovering alcoholic, begins to attend a fundamentalist Christian church at the behest of his brother. The pastor is anti-gay. Max becomes a born again Christian.
The plot really thickens when Zoe asks Max to release one of their stored embryos to her so that Vanessa can carry their child, for the two women to raise; he counters by suing her for custody of them. So the book covers controversial issues as gay rights, evangelical Christians, in vitro fertilization, surrogate parenthood, and divorce. All this happens within six months! The story is from the points of view of three characters in alternating chapters. It’s a thought-provoking book on change, tolerance and what constitutes a family, when the biological parents have such different beliefs and life-styles.
Life is more complicated than presented here, however. Max became a born-again just in time as a set up to the ethical question of who should raise the kids. Christian fundamentalists seem very stereotyped. There are a lot of issues competing for the readers’ attention, and the ending is too neatly wrapped up, too quickly. But if you like to read, want a book to stimulate some thoughts about many current topics, this is one you can get through quickly. As an editor, I tend to be pretty harsh on how a book is written, but sometimes it’s nice just to read a different kind of book. Two stars.
Author and leadership guru John Maxwell writes, “Whatever the question, the answer is leadership.”
Here’s a great program and a great opportunity for some qualified young people in the hemophilia community: a leadership-training program that pays. The Bayer Hemophilia Leadership Development Program is a unique opportunity to learn about hemophilia from an industry point-of-view by serving as an intern at Bayer, makers of Kogenate FS.
The internship is on location at headquarters in Wayne, New Jersey. Participants will be paid $15 an hour. During the internship, participants sharpen leadership skills in real-world scenarios that enrich the hemophilia community. Internship modules include:
▪ leadership training classes to develop presentation skills, learn about effective project management, and discover successful time management techniques. ▪ a personal challenge project which allows interns to apply their new skills to design and create a project ▪ a visit to the Bayer manufacturing facility in Berkeley, California ▪ a meeting with healthcare public policy professionals to see how effective advocacy relations impact legislative decisions • an exploration of marketing and communications strategies
This is an incredible opportunity. I know quite a few of past participants and they have all greatly enjoyed their experience, and learned a lot.
Applications are due by Monday, March 14, 2011. All applicants should be college students (sophomore through senior year), with a strong tie to hemophilia, and who demonstrate a commitment and interest in being a future leader in the hemophilia community.
Visit http://www.livingbeyondhemophilia.com/webapp/internships/forms-for-bayer-internships.jsp to learn more!
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