November 2012

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. (  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

Uniting Globally

Untreated Hemophilia,
Dominican Republic

attended the annual National Hemophilia Foundation meeting from November 7-11,
as I have done since 1992 faithfully. As usual it was filled with interesting
sessions on treatment of hemophilia, attractive displays of company booths and
wonderful reunions with many friends and colleagues. But something new: in his
opening speech, NHF CEO Val Bias, a man with hemophilia and one of the foremost
advocates in helping to get the Ricky Ray Law passed, spoke about uniting our
communities globally. This is the first time I believe that NHF has shown a
targeted interest in helping the world’s 75% with hemophilia who have little or
no access to care.

Laurie with Nancy S., who has a
child with VWD

was exciting to me as I have been working to help the underprivileged with
hemophilia since 1996. First with a leadership training program called
L.I.G.H.T., then a factor donation program called Project SHARE, still ongoing,
and my nonprofit Save One Life, which sponsors children overseas. I was
thrilled that NHF would bring its resources and brainpower to help those in

not before now? Timing, focus. We have been through many phases: the
contamination of the blood supply and subsequent infection of thousands occupied
our time and focus for years. Then came product shortages. The inhibitors. Even
NHF had its own problems internally and struggled to assess leadership (CEOs
came and went) and structure. That seems behind us now. And with Val’s leadership
and vision, NHF turned its powerful eye overseas, especially to Africa.
Bias and Neil Frick visited Nigeria in September, marking the first time that
someone from NHF has been to Africa. I’ve been traveling there since 1999, when
I first visited Zimbabwe and Kenya, and am returning on November 30. Finally,
finally America is showing its leadership and true giving nature in joining the
international community and participating in partnerships that will help
hemophilia nonprofits and its members in developing countries.
Meeting FB friends:
With Liz Purvis and Tater!

has bigger plans: the 2016 NHF meeting will be held in Miami, and Miami was
also selected for the 2016 World Federation of Hemophilia biennial meeting.
This means that attendees to either meeting can also extend their visit and
join the other meeting. WFH gets about 4,000 visitors and NHF gets about 2,500.
This would potentially be the biggest meeting on hemophilia in history, and on
American soil.

With Gary Cross (L) and Dana Kuhn,
of PSI

With Mt. Kilimanjaro teammates
Jeff Salantai and Julie Winton
Craig Price, Erik Melde and Derek Nelson
of Axiom Therapeutics

really applaud NHF becoming involved globally. The world needs it and it’s good
for us. I’ve always felt that we have more than enough to share, if we can just
find ways to do it. With NHF’s power, hemophilia care globally can progress at
a faster pace to reach more in need, an estimated 300,000 who suffer from this thoroughly
treatable disorder.

And looking at all the photos from NHF here, I realize that almost evey person pictured either sponsors a child with hemophilia or VWD in a developing country through Save One Life or has contributed in some way to Save One Life or Project SHARE. From summiting Kilimanjaro to raise funds, to making handicrafts that support a child, to sponsoring one directly, Americans have already been uniting globally—and now can take pride that their national organization will as well.

“Arrrr!” With Matt Collins of CSL Behring
With Reid Coleman of NC

Insurance Healthcare: Down to the Wire?

Well, not really. Yes, elections are Tuesday, and they are a nail biter. It’s too simple to say that if Romney wins, the Affordable Care Act will be repealed. And if Obama wins, the ACA and healthcare reform will continue. As Jim Romano of Patient Services, Inc. pointed out Saturday in Springfield, Massachusetts at our final Pulse on the Road symposia for 2012, no matter which candidate gets in office on Tuesday night, they will still need to contend with Congress.

Both men might face obstacles: Romney needs a majority in Congress and Obama faces a strong public undercurrent to revamp or repeal the Act. If Romney wins without a Republican majority in Congress, then the ACA and its Medicare provisions may continue to evolve.

But should Romney win on Tuesday with a GOP majority, he would have the political initiative and power to repeal the ACA. It’s possible Romney (and Paul Ryan) might push through Congress a structural overhaul of Medicare. With Obama, probably Medicare would be left as is.

Lisa Schmitt of New England Hemophilia Association
with Laurie Kelley of LA Kelley Communications

Jim pointed out that the ACA was modeled after Mass. Governor Romney’s state heathcare plan of 2006, which mandates that everyone in the Bay State have healthcare insurance, much as everyone must have car insurance to drive a car. The uninsured rate in Massachusetts dropped to 2%! But the jury is still weighing: In June 2011, the Boston Globe concluded that the healthcare overhaul “has, after five years, worked as well as or better than expected.” A study by the Beacon Hill Institute reported that the mandate was “responsible for a dramatic increase in health care spending.”

What will happen on Tuesday and its aftermath? Hard to say. 
Just keep reading, review your own insurance policy carefully, stay in touch with your local
hemophilia organization and above all, VOTE on Tuesday! No matter what happens, we will
always need to keep advocating for our bleeding disorders community.
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