For more info: nava.baxter.com
Pulse on the Road is our three-hour insurance symposium that updates families with bleeding disorders on insurance reform in their state, the Affordable Care Act (ACA), and how to compare and research insurance policies. Sponsored by Baxter Healthcare, implemented by us, we bring expert speakers, like NHF policy expert Nicole Quinn-Gato, to families around the country.
This week, San Diego! We had a cozy gathering of about 40 family members at the San Diego Zoo, minus about 40 kids who went off with “Birdman” for the kids program. Seated in the Treetop Conference room, families listed to our speakers all morning, while Spanish translation was provided by specialists to our Latino families.
Elizabeth Stoltz, Senior Manager, Healthcare Economics & Reimbursement at Baxter Heathcare, presented an overview of the Affordable Care Act, including the many benefits and things to watch out for. It’s 2014, and about 8 million Americans have enrolled in the Marketplace—the on-line place to shop and compare insurance plans. Remember, it’s mandatory now that every American have health insurance or face a penalty.
|Elizabeth Stoltz of Baxter Healthcare|
I next spoke about the importance of choosing your own plan. While there is a lot of technically policy stuff to cover in these symposia, I aways stress to the audience we teach this to save you money, out of pocket expenses. And to emphasize this, I ask a question after each speaker, relevant to what they just presented on. Whoever gets the right answer gets $10! This wakes up our audience, creates a friendly competitive spirit, and is just plain fun!
|Nicole Quinn-Gato of NHF|
Our audience got so into this game that even Robert, the man who set up the translator booths—and has nothing to do with hemophilia—answered one of our questions correctly first! Of course, he didn’t get the $10 as he is not related to hemophilia!
|Laurie helps Taylor with the Marketplace|
And lastly, Nicole gave a one hour live demonstration of “coveredca.com,” California’s marketplace. Wow, what a challenge! The exercise showed how complicated the California Marketplace is; it was a tough exercise, but I was proud at how families stuck with it, got the answers they needed, and ask us all for assistance in locating certain pages on the site. We had provided laptops for each table and they were all used well!
|Mateo reads a My First Factor Book!|
Lunch was served afterwards, where we got a chance to socialize with the families. This was then followed by goodbyes and a visit to the largest zoo int eh world, compliments of Pulse on the Road!
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.
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.
I just received word that Baxter has started Phase III of its recombinant VWD product. The investigational product is BAX 111, the first recombinant von Willebrand product in clinical development.
Currently, we have Humate-P (manufactured by CSL Behring) and Wilate (manufactured by Octapharma), which are both plasma-derived. Wilate was the first product indicated for the treatment of bleeds in VWD patients. Humate-P has been the standard for years in the US. But don’t forget Alphanate (from Grifols), originally for treating hemophilia A bleeds, and now indicated for treatment of VWD patients (FDA-approved for surgical and/or invasive procedures in certain patients with VWD). Not FDA-indicated but sometimes effective is Koate-DVI (Grifols, distributed by Kedrion in US), because it has VWD in it, along with FVIII.
No one can say that America doesn’t have choice!
It’s always exciting when there are new products on the horizon. Please remember too that all US FDA-approved drugs are considered both safe and effective for treatment of bleeding for VWD patients.
The Baxter study will assess a minimum of 36 patients in trial sites in the United States, Canada, Europe, Australia, Japan and India. Information about the trial including enrollment is available at www.clinicaltrials.gov or by calling 1-805-372-3322.
I am quite sure, that when and if the product hits the market, Baxter will think of a catchy name for BAX 111!
For more info, call Marie Kennedy, (805) 372-3543– I know her and she is a very trusted source and nice person!
Interesting Book I Just Read
The Nine Rooms of Happiness
by Lucy Danziger and Catherine Birndorf
This perky, feel-good book uses a clever metaphor for getting women to think about their life, stress level and aspirations: think of your life as a house, and each segment of your emotional life is a room. Basement (memories, childhood), Family room (family), living room (friends, relationships), bathroom (self-esteem, health) etc. In which room are you? Where do you have the most problems? Is your bathroom too close to your family room? In a sense, the authors are asking us to compartmentalize, ironically a task usually associated with men. The authors use real life vignettes from women of varying backgrounds and situations to reveal some universal anxieties women share, and then applying the “house” metaphor to show how they can get unstuck from their unhappy situation, and move into a different room, and therefore happiness.
Sound simplistic? It is. The book is okay for those new to the self-help genre and studying relationship and introspection; I think they will read it and come away feeling understood, optimistic and less alone with their unhappiness. But to someone who is well versed in more serious relationship books (Harriet Learner has excellent ones), this is psycho-lite. The book is based on many presuppositions: woman must have female friends, you must keep old friends in order to be happy (even if they drive you batty?), women are prone to anxieties, women are unhappy. I found the book putting much blame on women for their condition, which I am sure the authors didn’t intend! For example, why should a woman be made to feel in “denial” about getting older, or narcissistic because she tires of her long-time friends who are aging, speaking about grave plots, and do nothing to engage in life, while she is full of spirit and wants to take on life and adventures? Why is that a “problem,” as the authors clearly state? They insist she needs to keep these stick-in-the-mud friends while cultivating new friends. What is she doesn’t have time? What if some people really are just jerks and not just a result of a relationship problem stemming from “regression,” or “transference” or “denial”? The authors seem to have a psycho answer for everything, and not a street-smart, pragmatic way of viewing relationships.
A cookie cutter response to each vignette wears thin, as do the clichés, which run rampant (oops, there I just did it) in the book. “To have a relationship, you first have to relate” –really? The model is a clever idea, using a house, and no doubt some will feel helped by this book. It’s gotten pretty mixed reviews. Maybe good for novices, but when you finish this, move on to some serious relationship books, as this one is pop-psychology, cutesy and sends mixed messages. If you challenge the presuppositions, half the book is sunk. Two stars.