Blog Archive

Sunday, August 31, 2008

What car for a kid with hemophilia?


A father wrote to me two weeks ago to ask: what car would you recommend we get for our teen who has hemophilia and is learning to drive? His timing was impeccable. Tommy just totaled his car a few weeks ago. He was driving his 10 year old convertible Saab--convertible. And a truck hit him square on. Luckily, Tommy was wearing his seatbelt. Or not so luckily: this is one thing we always insisted our kids do when they get into a car. He walked away with only a severe bruise on his side. And it was a blessing in disguise: I never liked that Saab, with its seats that never went down, top that never functioned and a speedometer that went to 180 mph.

So what car is best for a teen with hemophilia, who is learning to drive? I decided to poll some of our readers and here's what they said:

Carol M. said: "We have raised 3 boys; Andy is age 25 and married. He has severe factor VIII deficiency plus Von Willebrand disease; Ben is age 21 with severe factor VIII; and Jacob is age 19, no hemophilia. When they got their first vehicles, they purchased nothing new or fast and each bought their own insurance and paid for their vehicles themselves. Purchasing a vehicle yourself makes you value it more. All have since upgraded to newer cars and pickups. Praise the Lord none have had severe wrecks, but they have all hit a deer!"

Beverly told me, "Regarding teens driving, I taught 2 daughters and 2 sons to drive. I do not worry anymore or any less over my sons driving as I do about my daughters, teens starting to drive are a worry for every parent and as you've just showed us it doesn't have to be our children who cause an accident, sometimes they just happen. When my youngest got his license I was nervous mainly because there are just so many cars on the roads and everyone is going faster and faster and seem to be preoccupied but I gave him the same advice I gave my oldest daughter 14 years ago: watch out for everyone around you! A plus for us also these days are cell phones: the kids can call when they are running late and we can call when they are late! I have always tried to treat my boys as normal as my girls and getting a license is certainly normal. Tell that new driving dad that his son will be fine, he won't be going to bed early as like the rest of us we wait for the car to pull into the driveway."

Carl L. recommended, "A 3 to 9 year old Volvo or Audi."

Carol B. replied: "That was very lucky for your son. Our son Mike started driving 2 months ago and we decided to give him the truck rather than the convertible :-) He saved and we matched his $1400 for a (not exactly what he had in mind) 92 Dodge Dakota. It is quite the gas hog but we feel better knowing that he is in a car that has some weight and a drivers side airbag. Of course he never drives with out his medic alert dangling from his neck.

Allison P.: "This is probably something you have already seen in some form or fashion, but I remember reading about a "Driving Contract" that teenagers make with their parents. I've attached a link to one of these sites (I'm sure there are dozens). I think it is a good idea - especially for those of us with children with bleeding diorders!

http://sites.google.com/site/parentingteendriverd2/Home/getting-started

Another parent recommended: "I would advise reading Consumer Reports. They do a annual safety report on cars."

Carl Lampe then wrote and changed his mind: tongue in cheek, he recommends the car sitting in the drivevway in the photo!

Susan G. offered: "Brett turned 16 last October, but just got his license 2 weeks ago. He has a latex allergy, so will airbags pose an even further problem? As a parent, your mind starts going into high-gear as their independence grows, doesn't it? :)"

Amy M. thought: "I think you hit the nail on the head that it isn't the car but the child that makes the difference. A very highly rated car will not withstand the impact of a semi truck hitting it on the interstate regardless of what it cost or what the federal highway commission says it will withstand. For me, I used the keys as a privilege. You screw up and you lose the privilege. The best thinking I can share is to get the son out on the road under different conditions with supervision and allow him to become comfortable and capable behind the wheel. The more I expected of my boys the more the produced in the way of responsible habits. I am the parent and I what I say goes because I am legally responsible for the car, insurance, and passengers as long as that child is under 18 and still will have the potential for a law suit if damage is done before he is 21. Good luck and pray the prayer of they are not mine God and I know you will take care of them when I can't."

Andrea B. wrote: "Spencer received his license this past July and had his first (and hopefully last) accident this past Friday; one day after we returned from a great family holiday in the Bahamas and one week before the start of school. Good grief!

"The following are a few of the guidelines we used in selecting a used vehicle for Spencer:
* We called our insurance company for information on the guidelines they use when insuring teenage drivers.
* We also found helpful information on safety issues by researching the government and the Insurance Institute's crash test results: National Highway Traffic Safety Administration, www.nhtsa.gov and Insurance Institute for Highway Safety, www.iihs.org , respectively.
* Four key items to look for in a vehicle: midsize vehicle, front impact airbags, side impact airbags as well as head-protecting side airbags. The last item is particularly critical for those with bleeding disorders.
* A bit off topic, but by far, the most instrumental and influential information about safe driving came from his father and me. I know that while Spencer had his learner's permit, he dreaded driving with us because of the constant and consistent dialog (though decidedly one-sided) that occurred every time he got behind the wheel. Though, he still managed to get into an accident and thank God, it was in our driveway; I know the next time he is allowed behind the wheel, he'll remember all our conversations and fully realize the importance of safe driving. He now realizes we weren't just talking to hear our voices, it was and still is because we love him."

"I was thinking of something along the lines of a Buffalo or Cougar," said Robert and Amy W. "They are bomb resistant vehicles made by Force Protection in Ladson, SC and are constructed on a frame from Mack Trucks. I still have some time before having to cross this bridge. Our son is 5. Hopefully, by the time he is of legal driving age, the war in Iraq will be over and we can pick up one of these from a surplus sale at a bargain."

And what of Tommy? He told me that the guy who hit him actually threatened him at the scene of the accident! As if! He said if Tommy reported the acident, he would come after him becasue "I know where you live." Apparently, this guy was at fault in another accident just the week before! I was worried about Tommy, who lives alone, but he reassured me when he said, "Don't worry, Mom. I gave him our home address." Oh yeah, that reassures me a whole lot!

Tommy turns 21 on September 8. We bought him a used but good Subaru Outback: good with gas, not too fast, reliable and practicle and NOT a convertible!

Great Book I Just Read
Over the Edge of the World by Laurence Bergreen
Like oil today, the European quest for spice drove the world’s economy and influenced global politics. The global spice trade underwent upheaval in 1453 when Constantinople fell to Turks, and the overland spice route between Asia and Europe was severed. The Age of Exploration began when the Spaniards and Portguese took to the seas to find new routes. One of these explorers was Ferdinand Magellan. This remarkable story will amaze you as you learn about the courageous men who charted the world, and how they suffered at sea for years in the 1500s. Magellan was a fascinating, fearless but flawed leader, who literally went where no man had gone before and where no one knew what lay ahead. With no reliable maps, no way to record longitude and often no food or water, Magellan relentlessly pursued his vision of global circumnavigation. He died in battle on the shores of the Philippines, where I will be headed in October. Not a trace of him was ever found. One of the greatest exploration and sea epics ever. Four stars!

Saturday, August 23, 2008

Register with PNS Now!

It's been a long time since I've seen a withdrawal or recall of factor. About six years ago we had a lot of them, and not everyone got word that their particular product was recalled. Then along came the Patient Notification System (PNS), a program that allows you to register to get alerted via email, telephone, fax or snail mail to any recalls or withdrawals. It's a good time now to ask yourself if you have registered with PNS.

Here's why: Just this week we had a voluntary recall of factor.

NHF's Medical Advisory #407 of August 20 announced that CSL Behring initiated a voluntary recall of four lots of Monoclate-P
that were distributed beginning on August 4, 2008. It reads: "This action is being taken with the knowledge of the United States Food and Drug Administration (FDA). These lots are being voluntarily recalled as a precautionary measure because they do not meet the potency specification when stored for three months at 5 degrees C. No specific safety issues have been identified and neither have adverse incidents been reported. CSL Behring is requesting that the use of these lots be immediately discontinued and the product be returned to the company."

When you register with PNS, you will be notified only about the product you use, so if you change brands, you may need to update your registration. If you are not registered, you may not hear at all about recalled brands. Please sign up with PNS today. Go to http://www.patientnotificationsystem.org to register. Don't be the last to know!

Needless to say you should also register with NHF's eNews, which will keep you updated with recalls and all news related to hemophilia.


Book I Just Read
Fifty Things to Do When You Turn Fifty by Ronnie Sellars (ed). This is a compilation of 50 essays by 50 authors, doctors, celebrities about turning 50 and what you need to know. It was pretty good, a general summary on changes you will face in areas like fitness, attitude, career and friendship. Thing is, most of us at age 50 are already aware of these things! So I guess it's a good book to read when you are 45. Best part is that all profits are donated. Two stars.

Sunday, August 17, 2008

Shopping Spree: CSL Limited to Buy Talecris

The hemophilia world is buzzing with the latest acquisition announcement: CSL Limited will buy Talecris Biotherapeutics Holdings Corp., one of the world's leading manufacturers of plasma-derived protein therapies. One of these therapies is Koate-DVI, a plasma-derived factor VIII clotting concentrate. The move will make CSL a stronger competitor in the $15 billion global plasma products market. Selling price? US $3.1 billion.

How will this affect the US market, with so many changes underfoot?

One concern is what will happen to Koate DVI. CSL Behring already has two plasma derived factor VIII concentrates, Monoclate P and Humate P. Will it need three? We may be jumping the gun in speculating. Talecris is reaching out to its customers to assure them that the acquisition will not affect production for the foreseeable future. Below is a letter from Talecris, which I am reprinting with permission. We'll be watching developments closely, and will let you know more in the near future. And let me add: we've been predicting consolidations, both in homecare and in pharma, for the past four years, and so they continue. We will monitor industry and as always, try to discern how consolidations and acquisitions, and product changes, will affect you, the consumer.

August 13, 2008

Dear Hemophilia friends, partners, and patients:

You may have heard Talecris Biotherapeutics and CSL have entered into a definitive agreement for CSL to purchase Talecris, pending the necessary regulatory approvals.

Please note that our commitment to provide high quality and effective products to our customers remains our paramount concern, and that has not changed -- nor will a transaction affect any of our existing contracts to supply Koate-DVI Antihemophilic Factor (Human).

While the transaction moves through regulatory review, we will continue to serve our customers and the patients who rely on us by providing a reliable supply of safe and effective protein therapies. Additionally, we will continue to invest in improving our products, increasing the availability of our therapies, and developing innovations to enhance the lives of our patients. In short, you can rely on us now and in the future, however that future unfolds.

Talecris Biotherapeutics recognizes that the availability of Koate-DVI, is a paramount issue for the patients around the world. It is an issue of extreme importance to us, and one in which we have invested heavily to resolve for the patients we serve. In the past several years, we've invested over $150 million in the vertical integration of our plasma supply chain to enable long-term reliable supply, and tremendous progress has been made in taking the necessary steps to ultimately increase the supply of Koate-DVI.

* Talecris has invested significantly in our Clayton manufacturing facility, which operates nearly 24 hours a day, 365 days a year. In fact, we are completed an extended planned maintenance in order to significantly upgrade portions of our facility where Koate-DVI is produced. These upgrades will allow us to support increased worldwide demand and meet current commitments to supply Koate-DVI to our patients.

* Talecris Plasma Resources, Inc. (TPR), will further ensure a reliable, consistent supply of plasma for the long-term and we continue to invest significantly in improving the output of these centers and opening new centers.

* CSL, like Talecris, is a key global player in the plasma biotherapeutics industry dedicated to treating rare and serious diseases, and is passionate about improving the quality of life for patients throughout the world. We believe a combined entity would accelerate our ability to develop and deliver therapies that enhance the lives of patients who depend on us.

Thank you for your continued support.

Sincerely,

John Cutter
General Manager Intercontinental
Talecris Biotherapeutics, Inc.



Book I Just Read: How Elizabeth Barrett Browning Saved My Life by Mameve Mamwed
I don't usually read fiction, especially not romantic fiction, but this book was a gift, and personalized by the author at that, so I could not avoid reading it. And I am glad I did: a little charmer of a book, easy to read and very well done. The real story's about love, wrapped up in a plot about how an antique chamber pot turns the life of a struggling, young, intelligent antiques dealer with poor self-esteem upside down. Abby thinks her life is about to get better when the pot is appraised at $75,000, as it was once owned by poet Elizabeth Barrett Browning. But it's the beginning of a lot of trouble, and a lot of introspection as to the nature of relationships when relatives and friends come out of the woodwork to get a piece of Abby's fortune. I loved all the literary references and as it takes place in Cambridge, Massachusetts, hearing about places well known to us Yanks. Three stars.

Sunday, August 10, 2008

On Vacation!

No blog this week! I am on vacation with my daughters Tara (17) and Mary (14) in Orlando but will return next week. Have a great week! We sure will!

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Monday, August 04, 2008

New Factor VIII Product

It's not too often that a new factor VIII product comes along. I don't pitch products, but I do announce new products and developments to keep our readers educated and up to date. So you should know there is a new factor VIII product called "Xyntha." It's pronounced "ZIN tha" and it's manufactured by Wyeth.

Why another recombinant factor VIII? This one will replace ReFacto, Wyeth's only recombinant FVIII product. ReFacto is first-generation recombinant FVIII; Xyntha is third generation, and will be competing with Advate, the first third-generation FVIII product.

So in a nutshell, you hemophilia A factor VIII concentrate users (which includes my son Tommy) have:

PLASMA DERIVED
Alphanate (Grifols)
Monoclate-P (CSL Behring)
Koate DVI (Talecris)

RECOMBINANT
First generation
Recombinate (Baxter)

Second generation
Kogenate FS (Bayer)
Helixate FS (CSL Behring)

Third generation
Advate
Xyntha

Which is best? How do you choose? Questions about Xyntha? That you need to discuss with your doctor! Please remember to go see your HTC at least once a year for clinic, more if you are under age 18 or have any complications of hemophilia bleeds.

Book I Just Read: Untamed Seas by Deborah Scaling Kiley

Kevin and I went sailing this weekend, and most of the trip was haunted by a foreboding thunderstorm that seemed to chase the chartered ship. As thunder cracked right over our heads and lightening split the sky, I thought about this book I had just read. Untamed Seas tells the amazing story of five people who tried to sail the Trashman, a yacht owned by a wealthy businessman, to Florida in the fall of 1982. They never got passed the northern east coast. Caught in a gale, the ship sank and there the remarkable story of survival begins. Who lives and who dies? This is a study in discipline, leadership, teamwork and crisis over a span of only 5 days. Hard to put down, you might finish this in one night yet the story will never leave you. And us? We made it back fine, back to Gloucester harbor, where the true story (As told in the excellent 2000 movie "The Perfect Storm," starring George Clooney) of the sinking of the Andrea Gail begins and was filmed. Three out of four stars.
 
Bayer