Putting the Fun in Insurance Education

Pulse on the Road Speakers

I enjoyed a lovely weekend in Cleveland, Ohio, a wonderful city that was enduring a collective sigh over the loss of the World Series. Still, with sunny skies we held another Pulse on the Road with the Northern Ohio Hemophilia Foundation. Program/Advocacy Manager Randi Clites invited us earlier this year and we were thrilled to finally make it.

A solid turnout of families came to hear Kelly Lynn Gonzales share her riveting personal story of advocacy. You can read Kelly Lynn’s story in our latest edition of Pulse magazine, available on our website.

Michelle Rice and Kelly Lynn Gonzlaes

I followed next, with a presentation entitled “Sympathy for the Payer,” a play on the song “Sympathy for the Devil,” appropriate as Cleveland is home to the famous Rock and Roll Hall of Fame. I believe that if we can try to understand better how payers think, we can better advocate to them our need for access to product and providers for the best comprehensive care. I compared insurance to a chess game, and it’s our responsibility to know who the players are, what their moves might be and how to counter move.

Laurie Kelley introducing Patrick James Lynch

Michelle Rice, senior vice president of public policy and stakeholder relationship, NHF, then gave a new presentation called “Don’t Get Lost in Translation,” and shared the various acronyms, definitions and concepts payers use. All this information would be useful for someone with a bleeding disorder to self-advocate to payers, as Kelly Lynn successfully did.

Finally, after lunch… who knew insurance could be fun? Patrick James Lynch, of Believe Limited, and his teammates Ryan Gielen and Rob Bradford, engaged the audience in “Factor Feud,” a new game that allowed teams to compete using the knowledge they just absorbed through our presentations. Modeled after the TV game show Family Feud, Patrick acted as game show host and asked the teams at their tables to recall answers to various questions gleaned from our presentations. We all had a laugh when he asked the toughest question: What were the nine counter moves Laurie listed that payers have made in the last few years? Even I had a hard time remembering what I had said!

Patrick James Lynch

For each question Patrick charismatically posed, the teams consulted at their tables, racing against the clock. They wrote their answers on a white board, came to the front of the room—while game show music played and Rob swayed—and ta-da! Flipping their white boards over, Patrick read off the answers. The team with the right answers advanced an extra logo on the huge Factor Feud white board. Everyone got into the game immediately and loved it!

So not only did the audience of bleeding disorder families get tons of information about insurance, they got to revisit it, recall from memory, and compete to give correct answers. What an effective and fun way to learn!

Patrick is the perfect game show host, and the fact that he has hemophilia reminded me of how much talent and passion there is in our community. After the event, Sean, a father of a child with hemophilia, approached us and thanked us deeply for our efforts. He said this was one of the best information days he had been to.

Thanks to Sean for that, thanks to Randi Clites for hosting us, thanks to Shire for funding us, thanks to my fellow presenters—Kelly Lynn Gonzales and Michelle Rice—and thanks to Believe Limited for all the fun!

Answers please!

Patrick engages the audience

Ryan tracks the teams

The Factor Feud participants
Rob loves the 70s style theme song!

Susan Moore jots her answers down

Who won?

Pulse on the Road in Baton Rouge

Zoraida and Kelly before the presentation

Just a 90 minute drive northwest from New Orleans, the “Big Easy,” Pulse on the Road brought a sense of urgency to the 80 attendees in Baton Rouge, state capital of Louisiana, of our latest presentation on insurance. Over a warm lunch of chicken, potatoes and greens, we provided the history of insurance reform in the US, particularly as it affects people with chronic disorders like hemophilia and von Willebrand disease, and how payers continue trying to cut costs… and why.
Laurie Kelly and attendee
Shawn Whelan
As we did two weeks ago, I opened with the brief history of escalating drug and medical costs, showing how imperative it was that insurance companies find ways to cut costs. Michelle Rice, vice president of public policy and stakeholder relations at NHF and recognized insurance “guru” of our community, then educated about how payers would go about doing this. Restricted networks, higher co-pays, specialty tiers, prior authorizations–sound familiar? And each of these methods at best will impact your bottom line and at worst could impact your access to certain therapies you might need.
Speakers Michelle Rice (NHF), Kelly
Lynn Gonzales and Laurie Kelley
Finally we closed with an emotive and inspirational story by the indomitable Kelly Lynn Gonzales of Nevada, a woman with von Willebrand disease who fought tenaciously for her daughter’s right to treatment–and won! Not only the treatment for her daughter, but treatment for all with VWD in Nevada… and tremendous respect from the medical and insurance community.

Said Carl, an attendee with hemophilia, “I’ve heard and read lots of testimonials from people and their problems with insurance, doctors and hospitals. But these ladies really opened my heart on how some people are really neglected.”

Donnie Akers, former board member of Hemophilia of America, told us that this was one of the best presentations he has seen in the last few years. Thanks to all who made this a success, including the Louisiana Hemophilia Foundation, and Baxalta, for sponsoring this event.That concludes our year of Pulse on the Road! 
Laurie and Jan Hamilton,
founder of HFA
After the event, Zoraida and I drove to New Orleans to enjoy the sights, sounds and tastes of one of our greatest American cities. Admiring the Spanish wrought-iron balconies and old architecture, the “voodoo” shops, the jazz music pouring out of every street corner bar and the smells of Cajun cooking, New Orleans is like no other place in this country! We capped our day with a “Haunted Houses” tour in the dark. New Orleans has a rich history of hauntings, and the stories vary from when pirates roamed the streets, to Nicholas Cage’s purchase of a $5 million house, not knowing its gruesome history! He soon sold it.
We end the year with a pep talk! Read your insurance policy annually, document your insurance inquiries and treatments, watch for hidden costs, and put aside an emergency fund for unexpected escalating costs and to help pay for hospitalizations. Be vigilant!
See you next year! 


Voodoo Shop!
Louisiana Riverboat

Andrew Jackson Statue

Most famous haunted hotel: The
Andrew Jackson!

Check the Pulse in Illinois!

L to R: Zoraida, Michelle, Laurie, Kelly, Elizabeth
Chicago, Illinois was the location of
our first Pulse on the Road in 2015. The
Bleeding Disorders Alliance Illinois
was our gracious host for this
day-long event, attended by 70 families.
Laurie with Audrey Taylor, 2002
It was a joyous day to be alive and together
after two tragedies had just struck: Illinois suffered about 14 tornadoes the
day before, which leveled the town of Fairdale, causing two deaths. The
community also lost the beloved Audrey Taylor, a sassy and compassionate nurse
at Rush University Hospital, one of the main hemophilia treatment centers.
Audrey was a great colleague who I always loved seeing and her death at age 51
is just devastating for all.
Our guest speakers included: the
fabulous Michelle Rice, vice president, Public Policy and Stakeholder
Relations, National Hemophilia Foundation; Kelly
Gonzalez
, a Nevada woman with von Willebrand disease, teacher, and now
advocate; Elizabeth Stoltz, senior manager, Market Access, Baxter Healthcare; and Laurie Kelley, yours truly!
Mona and Bob of BDAI, with Laurie Kelley
Executive director Bob Robinson welcome
everyone and introduced POTR, and me. I presented “Where We Were, Where We Are
and How We Got Here” to explain why the Affordable Care Act (ACA) come into
being, and how hemophilia fits in. With a few stats, I showed that skyrocketing
medical costs, particularly in specialty drugs (which factor is), was straining
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. As payers scramble
to cut costs and states try to cut their bloated budgets, the bleeding
disorders community is facing more and more restriction to access to medical
care and factor.
Michelle Rice, VP at NHF
Laurie and Zoraida with the DePaz Family
Enter Michelle, who explained in much greater depth how
this was happening, and gave great examples of where this was happening in our
country. After lunch, Kelly gave a lively and impassioned chronology how she became an advocate, to get access to medical care and the right factor brand for her
daughter Jacey, who accompanied her to this meeting. It was an incredible story that took 30
minutes, and left the audience in tears! But Kelly triumphed, and became a role
model for other parents fighting for access to care for their families.
Genny Moore earned $20 with our Q&A!
We tried
something new! Role playing! With Michelle acting as an insurance rep, we had
two volunteers come to the stage and act as patients, calling their insurer to
find out about 1) whether factor was covered, and 2) if their HTC was covered
under the plan. Theresa and Chrystal did a great job asking questions and not
accepting Michelle’s runaround answers. The audience got to weigh in an offer
what they thought the ladies did well and what they might have done
differently.
Finally, Community Forum, where our panel of experts field questions from the audience
on any subject, from their personal healthcare situation to state issues to
national affairs in insurance. We had some great questions and responses.
Amigas!
Thanks Zoraida Rosado, who planned our
trip so well, set up displays, tables and handouts, and dissembled everything;
to Michelle and Kelly for sharing their expertise and their weekend; and to Bob
and his BDAI team, to the Spanish translators, and to Baxter Healthcare, for providing the funding for all
the Pulse on the Roads, now in our 7th year!
Please
check www.kelleycom.com by December to see where we will be in 2015!
Good
Book I Just Read
Metallica:
Justice for All
[Kindle]
Joel
McIver
Metallica
is one of the best selling bands in history, and is often said to have defined “thrash”
metal. This is a look at their origins, spectacular rise, wayward path, and an in-depth look
at every song and every album. Probably a book for fans only, and not the best
book on rock I’ve ever read. The book gets terribly bogged down in detail, as
though it’s a ledger, schedule or chronology. Is it essential to know every city the band visited on every single tour? (It’s exhausting to
read! How did they travel so much and so often?) Much of the information is
gleaned from interviews appearing in magazines, and then pulled together to
weave some kind of story. There are layers of information missing, such as the
drug and alcohol binges throughout the band’s career, which McIver seems to
gloss over. Incredible detail on every song, how it compares to others in each album, with
McIver voicing his opinion on each song. Some of this is interesting, but you
lose the focus of the book and get sidetracked. I’m a huge fan of Metallica,
but found this book a bit tough to get through. Choppy writing, too much detail
here, not enough there. Three/five stars.

Pulse on the Road: Albany!

Laurie presents 

 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!

When is your open enrollment date?

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 of NHF

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.

Zoraida Rosado, who pulled
everything together!

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!

Teens were even crunching numbers!

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 
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