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Sunday, March 25, 2012
I love getting older. Really! Part of the joy is watching all the young boys I have known with hemophilia over the past 24 years, both here and abroad, grow up. I just went out to lunch in Waltham with a friend today, which is not a town I normally visit, and who should walk into the restaurant? A mom of a boy I have known with hemophilia since he was 2. We chatted for a bit. Her son is in college now, like mine. I get a warm glow thinking of how lucky our sons are to survive despite this disorder.
Not all children with hemophilia worldwide are so lucky. And you normally don't expect young people like our sons to think of such weighty matters; after all, they have college, jobs, video games and girls on their minds. But one young man stands apart from the crowd, and I have known him and his family for years and years. Diane, his mom, is one of our biggest sponsors for my nonprofit Save One Life. The Horbacz's sponsor 30 children! And next week, they journey to India for the first time to meet their sponsored children.
Not only that, but Matthew, only in high school, has decided to try to help us hit 1,000 sponsored people with hemophilia through his school.
On the Save One Life website, Matthew writes: "I cannot say that I 'suffer' from hemophilia, but the impoverished children in developing countries truly do suffer from a condition that could be so easily improved through better medical care and access to medication. Now if one of these kids falls and hits his knee, do you know what he does? Nothing. Medication is not available, and he may not even have access to ice. Rather than giving himself an infusion, he has to wait it out and pray. For those who are lucky enough to not know what internal bleeding feels like, let me tell you that, even with proper medication, it's NOT a pleasant experience. Your joint will become swollen, your movement is severely restricted, and it's very painful. Now imagine if this happened to you and there was absolutely nothing that you could do about it. You knowingly had to endure the pain and suffering while kids in wealthier countries like America who "suffer" from the same exact condition are able to live completely normal lives."
"Kids in poor countries are unable to live normal lives--many do not even make it past their teenage years. Through Save One Life, for $20 per month, you can help save the life of a child with hemophilia with food, medicine, and education. After discovering Save One Life and reading about the suffering children, it inspired my family and me to sponsor a child. It started out as just one child, but over the years that number grew. Today we proudly sponsor 30 children."
"This April my parents and I are going to India to meet the children we sponsor and bring life-saving medical supplies. However, seeing children who do not yet have sponsors will be a most painful experience. How can I go empty handed to visit these kids in great need? Well, I don't plan to. My plan is to match each kid I meet with a sponsor. Therefore, I am asking for your help. Please help me meet my goal of finding 35 sponsors before April 4th. Please consider sponsoring a child or possibly making a donation in support of my mission to India. Please help Save One Life. Together, we can make a difference. Thank you and God Bless."
Matthew represents the future of America, and this life-changing visit will surely plant seeds that will sprout in the years to come. The power of one young man with hemophilia to change the world! It's humbling and admirable. Visit www.SaveOneLife.net to learn more and to support Matthew's mission.
And ask yourself: what have you done for a suffering person lately? What's your mission in life? Find it and live it; take it from Matthew. There are many ways to directly help those who suffer, through Save One Life. Good luck, Matthew and God bless you!
Great Book I Just Read
The Island of Dr. Moreau by H.G. Wells
The gifted Wells has created an unsettling sci-fi masterpiece that impacts at many levels. Superficially, Pendrick, a British scientist, is shipwrecked on a remote island where he finds strange creatures, combinations of man and beast. Eventually he meets Dr. Moreau and his assistant Montgomery, who are conducting horrible vivisection experiments on animals. Eventually Pendrick learns they are attempting to transform animals into human beings. Pendrick watches in horror at the unfortunate outcomes, which seem a mockery of nature. The creatures are subservient to Moreau, who rules them with "Rules" and whips. With the references to hairy beasts, dark skins and intelligible speech, Wells clearly makes an indictment of the British Empire, subjugating and attempting to civilize the "lesser" people of the world in India and Asia. It also is a statement on evolution: can we evolve "down" as well as up? And finally, humanitarianism. In trying to make the beasts into men, is Moreau trying to make the animal culture/nature into something better, but also something it is not? Moreau plays God and attempts to alter genetic codes, nature and destiny. Extremely well written and very hard to put down. A literary classic. Five/five stars.
Sunday, March 18, 2012
I always joke that these are the authorities to whom I answer, in that order. My editor, Sara, is fantastic. She's worked with me for 15 or 16 years now, and probably knows as much about hemophilia and VWD as any layperson. She's the left side of my brain, processing words for me, and after all this time she even knows how I think when I read and write. She is indispensable to my work.
Wish everyone had a Sara for an editor. One of our writers, Richard Atwood, found this little educational book for juveniles, which mentions hemophilia. It also mentioned AIDS, and incredulously, got the acronym wrong! Where were their editors?
Germ Stories, by Arthur Kornberg was published in 2008, and is a brief 72 pages.
Richard writes: "Written for juvenile readers, 10 profiles of what the author termed 'the little beasties' or germs were presented. Each germ was identified with its scientific name, its pronunciation, a short definition, and a quick fact, plus was accompanied with one or more colored photographs, a whimsical watercolor drawing, and, most importantly, a rhyming poem that told a story about the germ. The story of HIV mentioned Bill who was in the second grade and had hemophilia. His hemophilia was defined as slow clotting of his blood, and he acquired the AIDS virus from a contaminated blood transfusion. Incredulously, AIDS was listed as an abbreviation for “Acute” Immunodeficiency, rather than the correct term Acquired. There was also no mention that for many years the factor concentrates used for the treatment of hemophilia have been monitored to ensure their safety, and thus are devoid of the AIDS and other viruses.
"Despite the use of both a copy editor and a proof reader, an incorrect name for AIDS was used; all the other, long technical names were used correctly. The mention of hemophilia and AIDS seemed dated, as it would have been appropriate during the 1980s, but not currently. Thus in a quite impressive book meant for children, hemophilia got short shrift. The author is a research enzymologist at Stanford University who won the 1959 Nobel Prize in Medicine for his discoveries with DNA."
I know, mistakes happen; we've made quite a few ourselves, but this one was a whopper. AIDS has only been the greatest scourge of the 20th century, devastating whole generations and continents. I liked Richard's comment that "as usual" hemophilia gets the short shrift. Imagine in this day and age, hemophilia is still misrepresented! Well, I guess I have a future still in publishing info about hemophilia!
Interesting Novella I Just Read
Who Goes There by John W. Campbell (as Don A. Stuart)
Speaking of editorial issues, this little book is filled with them. I was behind in my goal to read one book a week, so turned to this quickie, which I had heard a lot about. Only 56 pages long, available for free on the Internet, it didn't take long to read, but ouch, what weak writing! One character was described as 6 foot 4, a "bronze giant," (meaning he was swarthy? Tanned?) but every reference to him referred to him as a bronze giant, with bronze hands, bronze neck, bronze hair? Bronze beard? Bronze, bronze, bronze. In fact, Campbell used the word five times in one short paragraph. The book strangely references metal all the time: steely nerves, etc. Even the ice axe handle was bronze! The characters were thinly developed and the transitioning from chapter to chapter awkward. The writing was like a college kid making his first attempt at fictional writing.
But here it's the story that counts, which is great. It's hard to focus on the story with this writing style, but certainly underneath all the mixed metaphors, repetition and uninspiring use of words is a very good story. Apparently others thought so too. Movie director John Carpenter snatched up this gem and turned it into the 1982, now cult-classic "The Thing," a terrifying and well-acted movie. Three/five stars.
Sunday, March 11, 2012
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.
Sunday, March 04, 2012
If you wonder why insurance companies may be scrutinizing our factor usage and insisting on log forms, even checking our inventory, read this article on al.com, posted February 19, 2012, by Brendan Kirby. All it takes is one bad apple; maybe four?
"MOBILE, Alabama -- Four people convicted in a Medicaid kickback case face prison sentences ranging from a little less than 2 years to a little more than 4 years, according to a preliminary estimate of advisory sentencing guidelines...
"A jury in Mobile convicted Lori Skowronski Brill and her estranged husband, Butch Brill, of conspiracy to commit health care fraud in a scheme to overbill Alabama Medicaid for an extremely expensive family of blood-clotting agents known as Factor. Testimony at the trial indicated that the medication, used to treat hemophilia and other disorders, can cost up to $1 million a year for a single patient, in extreme cases."
"An FBI agent testified that investigators found hundreds of thousands of dollars’ worth of Factor rotting in the garage of Lori Brill’s home in Robertsdale in the summer of 2009. Prosecutors alleged that she and others falsified logs to make it appear as though clients of her patient advocacy business were using more Factor than they actually were."
"That increased the payments Brill received from specialty pharmacies who paid her for patient referrals. The jury also convicted brothers Jeff and Chris Vernon, who ran Medfusion Rx in Birmingham at the time, of paying kickbacks to Brill for the patient
"A sentence of at least 2 years and 3 months and no more than 2 years and 9 months in prison for Lori Brill. A sentence of at least a year and 9 months and no more than 2 years and 3 months in prison for Butch Brill. A sentence of at least 3 years and 5 months and no more than 4 years and 3 months in prison for the Vernon brothers. It will be up to U.S. District Judge Kristi DuBose to determine the correct calculation of the advisory guidelines. She can sentence the defendants within those ranges but does not have to follow the recommendations."
"At the June 8 sentencing, DuBose also will determine how much money the defendants must forfeit to the government. The indictment sought $29 million. That represents all of the money paid by Medicaid for the hemophilia drugs, not just the illegitimate amount."
This isn't the first time something like this has happened. There are people in jail right now for doing dirty deeds with our kids' factor, while as you know from my work, people in developing countries are dying for lack of factor. Lori Brill had more factor spoiling in her garage than most of the countries of Africa have put together. Justice is served.
Great Book I Just Read
Lucy's Legacy by Don Johanson (Hard copy & Kindle version)
A brilliant and engaging look at our possible origins as humans. Johanson is the paleontologist who in 1974 discovered "Lucy," an australopithecus afarensis who made headlines around the world as the oldest known hominid at 3.2 million years old. Was she the "missing link"? Much has happened since her discovery, and Johanson describes the different theories of human evolution: where are the gaps in knowledge? What do we suppose? What do we know? He shows how paleontologists piece together theories based on findings--and even the scientists sometimes disagree with one another!: larger brain size in later hominids, occurring when we began to walk as bipeds. Tool use in certain hominids but not others; migration of certain species. Did we evolve in one linear formation or were there several hominds existing at the same time? My only frustration was that the book was a bit disjointed. The first part is heavy on minutiae of his wanderings to various African discovery sites, including what he had for breakfast, lunch and dinner on one day! I think if you are new to Africa, you'll find the travelogue interesting. Much more interesting is the second part, when he dives into the theories of man's origins and evolution. I learned so much and was intrigued by how long it takes for these scientists to clean and construct a 3 million year old skull (years sometimes!), and how plentiful hominid parts are in the Great Rift Valley in Africa. Johanson has so much passion for the subject; after finishing the book I immediately downloaded the Kindle version and watched a Nova show on the subject. (Beware: the Kindle version does not have the Epilogue on Ardie!) Great stuff and thought provoking! Four/five stars.
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