February 2007

Our Own Academy Awards

The Academy Awards was Hollywood’s big event last night but this coming weekend is one of our own big events in hemophilia: the annual Hemophilia Federation of America (HFA) meeting, in Albuquerque, New Mexico. We won’t have Versace gowns and bling, but we certainly have an all star cast and some great shows. It’s casual but energetic, electric with advocacy issues, medical news and networking. It’s smaller than NHF meetings, which creates a more intimate atmosphere; it’s less like a red carpet event and more like a family reunion.

The HFA does important work in advocacy, particularly around the issues of product and provider choice. Check out their website at www.hemophiliafed.org. Sign up for their newsletter; check out their programs. I met with a pharmaceutical representative recently who is new to our community; this will be his first hemophilia event. I told him he was in for a treat. I myself will not be attending this year. If you do not attend either, at least tune in to read about the event on the HFA website or in their magazine, and see who is best director, best program, best advocate!

PS. “The Departed” was most certainly best movie of the year… and it’s set in Boston! You have to love those accents.

Count Your Blessings… and Share Them

When you think you are going through tough times with hemophilia, I want you to think of some children I know. Born into poverty, suffering from hemophilia, these children usually have no access to factor, and endure horrific suffering. Some of these children are like Gorla. Gorla is ten-year-old boy from India with severe factor VIII deficiency. He is in the third grade and does miss school due to his disorder. He does not speak English. He has a 13-year-old brother, Yagna, who is also factor VIII deficient. His parents are agriculture laborers, who raise milk buffalos. The family income is only $2 a day.

Imagine trying to live on $2 a day. You can’t just pick up the phone and order factor when you are bleeding. You often cannot even go to the hospital for treatment; there is none. You simply endure it and suffer. Sometimes, you die.

We don’t want that to happen to Gorla. If you want, you can change his life. Save One Life is a nonprofit that provides individual sponsorships for boys like Gorla. In fact, Gorla himself is available to be sponsored!

I founded Save One Life six years ago. I sponsor 5 children with hemophilia personally, and see first-hand the difference it makes in their lives. We currently have almost 200 children in eight countries sponsored, but we have a long way to go. Would you like to help? Consider sponsoring a child in need, like Gorla. Just $20 a month could change his life, and enrich yours. Go to www.saveonelifeinc.org today, and share your blessings.

No Wonder There’s No Money for Factor

Just some food for thought, while we all contemplate our diminishing choices over healthcare. I read this in the latest Time magazine:

$100 billion: Amount that the new budget proposed by President Bush would save over five years by trimming Medicaid and Medicare costs…

$100 billion: Additional funding Bush is seeking for Iraq and Afghanistan for fiscal 2008, on top of $70 billion already requested this year.

Very slick of Time magazine: juxtaposing the two figures makes you naturally ask, why is Medicaid being targeted for cost cuts and limited choice? To fund this war? The answers are never so clear cut. This is sensationlism journalism, of course.

And yet I can think of 12 families with hemophilia off the top of my head who are suffering due to increasingly limited healthcare coverage in their states. We have elections coming up in November 2008; candidates are already announcing their entry into the race. It will be great to get a dialogue going now on how our federal and state budgets are being used, and use our right and power to vote, to protect our healthcare dollars. Be ready for 2008, and read up on the candidates now. Will their decisions about how to end his war in turn impact health care budgets?

New Product to Treat Von Willebrand Disease

Great news for von Willebrand patients: The FDA announced last week the approval of Alphanate for the treatment of VWD. The product is approved for patients undergoing surgery or invasive procedures with von Willebrand disease (VWD) in whom the hormone desmopressin is either ineffective or contraindicated. It is not approved for patients with VWD Type 3 who are undergoing major surgery.

Up till now in the US, only Humate-P has been approved for VWD. Of course, other products are used off-label when needed. To have a product legally approved overcomes a big hurdle in treatment, and provides consumers more choice. Alphanate is the first biologic product approved for treatment of surgical and invasive procedures in patients with vWD.

Alphante is manufactured by Grifols Biologicals, Inc., Los Angeles, Calif. (which acquired the former manufacturer Alpha Therapeutics). It’s a plasma derived product, as is Humate-P. Alphanate undergoes two separate steps for viral inactivation to reduce the risk of blood-borne viruses.

It’s nice to report some positive news! This approval has been in the works for years. For more information on which product is best for you, ask your doctor. But also call the manufacturer, and talk to your local hemophilia organization. Thanks to Dennis Penning of the Hemophilia Foundation of Illinois for circulating this to the community, and for always keeping us informed… you rock, Dennis!

And don’t forget you can order our book, the world’s first, A Guide to Living with von Willebrand Disease, through this website. Free to families, HTCs and nonprofits.

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