Baxter Healthcare

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.

Pulse on the Road in San Diego!

Laurie Kelley June 30, 2014

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.

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!

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!

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 in the world, compliments of Pulse on the Road!

Next stop? Houston in August!

News from Pharma

Laurie Kelley June 16, 2014

So much has been happening in the hemophilia community lately, I decided to post some news releases about new products and new services from three different pharma manufacturers. Last week we shared the news about Biogen Idec’s Eolctate approval; below are more interesting items, straight from the horses’ mouths.

From CSL Behring

New–CSL Behring’s world-class biotechnology manufacturing facility in Broadmeadows, Australia. The facility is for late-stage production of hemophilia therapies and is one of the largest and most advanced of its kind in the world. Leading-edge science is at the core of the $250 million expansion, which is expected to drive long-term growth in CSL Behring’s promising bleeding disorders portfolio.
In particular, the facility will produce novel recombinant therapies on a large scale for international clinical trials. Our recombinant technology uses a unique recombinant-albumin-fusion platform, which we believe could offer distinct clinical advantages and improve patient experiences. Suffice it say, CSL Behring’s steadily-rising research and development spending has played a key role in developing these and other new technologies. For example, in 2011/2012 we spent $368 million on R&D (about 8% of total sales). And over the last 5 to 10 years, we have advanced an enviable pipeline with exciting product candidates that may offer enormous treatment benefits.

From Baxter Healthcare

Mobile video gamers looking for the next app for their smartphone or tablet now have an option developed specifically for the hemophilia community. Baxter Healthcare Corporation has created a free multi-game app, called Eco-Trek, primarily for people between the ages of 15 and 32. Yet based on the reactions of pre-release product testers, Baxter expects that Eco-Trek will appeal to people of all ages, from adolescents waiting to be seen at hemophilia treatment centers, to older adults that enjoy competing in video games. Eco-Trek, which is available to everyone regardless of their treatment, is the first socially connected video game designed for the hemophilia community. With hemophilia-specific content and Facebook score-sharing built into the game, Eco-Trek is a first-of-its-kind mobile app. A national leaderboard will create competition among players in Eco-Trek’s three online adventures, each of which have 10 levels:
·     Bushwhacked! – Find your way through a forest maze without losing supplies from your backpack
·     Alpine Summit – Compete in an uphill race against the clock, dodging obstacles along the trail
·     Roughin’ It – Set up camp and complete specific tasks while pesky critters try to get in your way

“We are really excited about Eco-Trek because it’s simple, interactive, and offers important educational information about hemophilia A and ADVATE [Antihemophilic Factor (Recombinant)], while you’re competing in fun activities,” said Jeff Schaffnit, senior director of US Hemophilia Marketing. “For teens and young adults with hemophilia, this type of format can make it a lot more fun to gain knowledge on hemophilia.”

Eco-Trek is a free app available for download from the Apple App Store and Google Play. For more information, contact your Baxter representative.

From Pfizer

Pfizer understands that health care costs can be a challenge for those with hemophilia and their families, and strives to provide access and patient-centered support. Therapy is just one part of the equation, which is why we offer financial support for eligible patients as well as educational programs for patients with hemophilia who infuse with Pfizer Hemophilia Recombinant Factor products.

We’re pleased to share with you three program updates and hope that you will help us share this news with the hemophilia community. As of April 1:

• Pfizer increased the maximum cap on its Pfizer Factor Savings Card
Program. Eligible patients can now save up to $5,000 annually on copay, deductible and coinsurance costs. Terms and conditions apply. Visit PfizerFactorSavingsCard.com to learn more and fill out a brief registration form. If you have any questions about the use of this Pfizer Factor Savings Card, please call 1-888-240-9040 or send questions to: Pfizer Factor Savings Program, 6501 Weston Parkway, Suite 370, Cary, NC 27513.

• To continue to meet the changing needs of today’s patients, Pfizer is consolidating its various prescription assistance programs, formerly known as Pfizer Helpful Answers, into a new comprehensive program called Pfizer RxPathways. Pfizer RxPathways is a family of prescription assistance programs that provides eligible patients with financial support and reimbursement support services. Access the program today by visiting PfizerRxPath.com.

• The Soozie Courter Hemophilia Scholarship Program, a tuition assistance program
for students with either hemophilia A or hemophilia B, is now accepting applications for the 2014-2015 school year. To apply, please visit http://www.hemophiliavillage.com/resources-support/scholarship-assistance

Insurance Workshop in Nebraska: Pulse on the Road 2014

Laurie Kelley March 24, 2014

Warm air greeted greeted us in Omaha, Nebraska on Friday as I arrived from Boston to set up for our first Pulse on the Road workshop of 2014. POTR is a three our workshop, sponsored by Baxter Healthcare and held in tandem with the National Hemophilia Foundation, which so generously lends us the incomparable Michelle Rice, mother of two adult sons with hemophilia, and director of public policy at NHF. Last year she hired more staff to help her, as she is stretched thin visiting chapters, patients, insurance companies and governments in all 50 states. On this trip we were thrilled to have Nicole Quinn-Gato of NHF, also a policy specialist, accompany Michelle.

The warm welcome by Nebraska Chapter of NHF executive director Kristi Harvey-Simi was followed by an update on the Affordable Care Act by Kim Isenberg, Senior Manager, Reimbursement and Advocacy, Baxter Healthcare. She covered the ACA in general and as it affects hemophilia, noting exceptions for some groups. Nevada has elected not to expand state Medicaid, an important policy to note.

I then presented important points on the importance of choosing
healthcare, since it is now mandated that almost everyone have healthcare. We
need to still watch out for certain variables, such as out of pocket costs,
which may increase as a result of changing policies and plans.

And finally, Michelle and Nicole did a great job proving a 90-minute, hands-on workshop to access the healthcare.gov website, using laptops and iPads, and actually logging on to scope out choosing a plan! It was interesting and frustrating at times! Sometimes it’s hard to find your HTC, was the most common problem.

After lunch there was a Q&A, where the audience could ask questions of the experts.

Though I offered everyone a chance to go home an hour earlier, nobody took advantage: I think they were really soaking up all the information Michelle, Nicole and Kim had to offer!

Next stop for POTR? Philadelphia in June!

Pulse on the Road: Albany!

Laurie Kelley March 18, 2013

We had a wonderful visit to Albany, to meet members of the New York Coalition of hemophilia organizations. Bob Graham, person with hemophilia, helped facilitate our invitation and arrival and welcomed us Sunday, March 10. It was a small gathering of families and some clinicians, who eagerly drank in all the insurance information we presented.

Kelly Fitzgerald, associate director of government relations at Patient Services Inc. (PSI) gave everyone a 45-minute update on the Affordable Care Act. Key take-aways include:

• In 2014, everyone must have health insurance
• You may need to select your insurance in a “marketplace”
• You must read your insurance policy annually and carefully!

I then gave a talk called “The Importance of Choosing a Healthcare Plan,” infused with humorous stories of my own son’s struggle with insurance (hint: good idea to have your insurance and medical mail forwarded from mom’s house to your place over a pizza shop!) and stressing that you must pay attention to open enrollment dates. Do you know yours??

Michelle Rice, public policy director of NHF, then gave her acclaimed one hour workshop on the NHF Insurance Toolkit. We passed out workbooks and calculators and I was so impressed by the audience’s dedication! Even the teens were busy crunching numbers to see how “John Doe”‘s medical expenses add up when comparing two plans.

And finally, we had a 30 minute expert panel, so the audience could ask questions of the speakers. I learned a lot. One nurse in the audience offered this excellent piece of advice: when using medical services, instead of asking “Do you accept this insurance?” instead ask, “Are you in network with this insurance plan”? This pointed question could save you so many hassles, time and paperwork!

Families engaged in NHF’s Insurance Toolkit

Thanks to Bob Graham, the New York Coalition, my team, our guest speakers, and all the families who attended. Deepest gratitude to Baxter Healthcare Corporation for sponsoring Pulse on the Road. For more information about health care reform, visit:

•www.healthcare.gov

•www.patientservicesinc.org

•www.hemophilia.org

•www.hemophiliafed.org