Baxter

Pulse on the Road in Texas!

Laurie Kelley August 24, 2014
Austin, Texas was the location of our third Pulse on the Road in 2014. Temperatures spiking 100° didn’t stop a huge turnout for the Texas
Bleeding Disorders Conference, co-hosted by the Lone Star Chapter of NHF and the Texas Central Chapter of NHF. Melissa Compton, mother extraordinaire of a child with hemophilia (and a compassionate supporter of Save One Life) emceed the event and introduced our team on Sunday morning at 8 am sharp, following a delicious buffet breakfast. About 400 people attended the two-hour session, one of our highest numbers yet!
I changed up the presentations a bit and first delved into why did the Affordable Care Act (ACA) come to be? With a few stats, I showed that skyrocketing medical costs, particularly in specialty drugs (which factor is), was straining the state budgets; it was only a matter of time before private insurers caught on. Looking to cut costs, insurers turned to increasing prior authorizations, formularies, decreasing choice of factor
provider, and more.
After setting that stage, Tom Larmondra of Baxter Healthcare reviewed the ACA, particularly the benefits to those with bleeding disorders. He reviewed the fine print, exclusions, and most important, the Marketplace: what is it, how does it work, and how to use it.
Back to me: I next reviewed the importance of choosing a healthcare plan, as many people may need to go on line to choose one. Comparing it to car insurance, which we are all more familiar with, we reviewed costs versus benefits, and in particular which costs to watch out for.
The goal? Learning the main things to consider when you compare healthcare plans so you do not underestimate your healthcare annual budget. We want you to save your hard earned income!
Last, we welcomed Michelle Rice, Vice president, Public Policy and Stakeholder Relations, National Hemophilia Foundation and Marla Feinstein, Policy Analyst, NHF. Their topic, Appeals and Grievances—Making Your Case, covered what to do when insurers reject your claims. Using the fun and sophisticated ARS devices, audience members cast their votes for the correct answers to a series of educational questions, while tunes played in the background (Ghostbusters?).
The event scored rave reviews from the looks of the 60+ evaluations turned in. Our thanks to Baxter Healthcare, for providing the funding for all the Pulse on the Roads, now in our 5th year!
We’re done for the year but look forward to visiting you and bringing up to date information about insurance reform to your state!
Please check www.kelleycom.com by December to see where we will be in 2015!
Great Book I Just Read
 
Midnight Express [Kindle]
Billy Hayes &
William Hoffer
Much more than a survival book, it’s
the true story about an American enduring a harsh and dehumanizing imprisonment
in a Turkish jail in the 1970s. A gripping, unforgiving and frightening tale,
Hayes is incarcerated while trying to smuggle hash out of Turkey. Hayes ensured
five years of mind and physical torture, a labyrinth court system, watching the
anguish of his parents as he deteriorates and becomes a shadow of himself, until
his incredible escape. Hayes accepts that he broke the law and deserved
punishment, but it highlights the brutality apparent in the penal systems of
other countries, and the injustice of completing his initial sentence and
having the system overturn it and be given life. His portrayal of life in
prison is sobering and sad; his adjustment to the microsociety inside the
prison walls is fascinating. The excellent 1978 Oliver Stone movie follows the book for the
most part, but ends quite differently. Four/five stars.

Get the Education Advantage

Laurie Kelley January 14, 2013
Did you know that LA Kelley Communications had the very first on-line listing of national scholarships? We started this many years ago, and now update it yearly. Go to our scholarship page to learn more. But this week I want to highlight one right here.

For the fourth consecutive year, Baxter Healthcare Corporation is sponsoring the Education Advantage scholarship program for hemophilia A patients. Baxter has increased its funding of this program year after year.

To date, 104 scholarships have been awarded, totaling $565,000. Students working toward a bachelor’s degree are eligible for up to $15,000 per year. Students seeking an associate’s degree or pursuing a technical/vocational certificate program are eligible for up to $2,500 per year. Scholarships are renewable for up to three years or until the student finishes school.

The program is administered by Scholarship America, the nation’s leading non-profit scholarship administrator. Scholarship America is solely responsible for reviewing all scholarship applications, determining financial need and eligibility, and selecting scholarship recipients.

The Education Advantage program will start accepting new scholarship applications on February 1, 2013.  Completed applications are due
to Scholarship America and postmarked by April 1, 2013.
The program goes beyond financial aid with resources to help people with hemophilia A get more out of life, including education planning, career development, health management and community involvement.
For more information on the program, visit www.thereforyou.com/educationadvantage or call Scholarship America at 877-544-3018.
Interesting Book I Just Read
Confessions of a Public Speaker by Scott Berkum (Kindle)
Scott Berkun may be a professional public speaker, but speaking and writing are two different media. This book is a mixed bag. He shares his own career as a public speaker, trying to be part comic and part storyteller, but neither really works at first. The opening chapters are awkward and clumsy, with repeated references to aliens and spaceships for some reason. Lots of the information he shares is info you can get from much better written books. But midway through the book it does get more interesting. It becomes less about his direct experiences (which are kind of lame) and more about the psychology of presenting, listening and delivering. I found the chapter on TV and other media interesting (perhaps because I don’t do a whole lot of that and wanted to know more).
Know that at least one-third of the book is appendices. These contain good condensed information. I didn’t like his use of profanity,
and wondered what kind of a speaker teaches about what to beware of when he himself swears! Unless you know your audience intimately, unless you are on the level of a Steve Jobs or Bill Gates, or unless you are a comedian, never use profanity for risk of alienating your audience. Two and a half out of five stars.

Long, Long Time to Come

Laurie Kelley February 13, 2012

I just wrote a couple of weeks ago about long acting factor: Biogen Idec’s clinical studies have been in the works for a while, and CSL Behring just announced that they are starting a global phase II/III, multi-center study.

On January 5, Baxter announced that they are launching a Phase I clinical study of “BAX 855,” a longer-acting (PEGylated) form of a full-length recombinant factor VIII (rFVIII) protein, based on Advate’s manufacturing process. BAX 855 leverages Nektar Therapeutics’ proprietary PEGylation technology, which is designed to extend the duration of activity of proteins and larger molecules.

This means, if the trials go as hoped, longer acting factor in the bloodstream, requiring fewer infusions to get the job done.

So that’s three companies in clinical trials for longer-acting factor! More great news for our children’s future.

Great Book I Just Read
Born to Run by Christopher McDougall (Kindle version)
Stymied by a nagging injury, McDougall questions his doctors, and sets out to find a way to continue running, which leads him to the Tarahumara Indians in Mexico’s deadly Copper Canyons. These people living in near isolation, are able to run hundreds of miles without rest or injury. McDougall shares his adventure of traveling to meet them, interspersing chapters with the history of ultra running and introduces all its quirky characters, the history of the Tarahumara, and making a good case for running barefoot! The book has stirred some controversy–has he done a disservice to the Tarahumara, ruined Nike’s reputation and exalted barefoot running without citing his studies? Whatever he has done, it is a joy to read due to his crackling style, which is witty, colorful, funny and has great cultural references–this guy knows how to write! I’m not sure I buy everything he’s selling, but I did go running today, and loved it. Three star/four.

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