Dealing the Hand Your Dealt: Pulse on the Road in Las Vegas!

I’m in Henderson, Nevada, a suburb of Las Vegas, the day after we gave another Pulse on the Road symposium about health care insurance. The air is dry and cool, the sky a perfect robin’s egg blue, and I’m surrounded by red and purple mountains. What an enchanting place to visit!

Whenever I am here, I think of my dear friend and colleague, Renee Paper. Renee was a champion of those with von Willebrand disease. She became the face of those with VWD, and advanced care for it, and for Nevada, like no one else. Nevada has an HTC thanks to her; Nevada has an NHF Chapter, thanks to her. Trailblazer, activist, she was also an emergency room nurse who had VWD and her personal story, how she was given a hysterectomy in her early 20s to stop her excessive bleeding and thus became childless, led her to become a VWD Warrior when she was later properly diagnosed as having VWD. She vowed no one else would suffer as she had.

Rewarding a partipant for a correct answer!

It seems we might have another Renee in our midst! We invited Nevada resident Kelly Lynn Gonzalez to speak at Pulse on the Road, upon recommendation of Michelle Rice, vice president of public policy and stakeholder relations at National Hemophilia Foundation. Good gamble. Kelly has VWD, as does her daughter Jacey. Kelly is the mother of 5 (yes, 5!!) and also worked in education, and now works for a specialty pharmacy. She participated here as a mother, to share the story of the birth of her activism.

In a nutshell, it was the struggle to get a diagnosis for Jacey, who suffered terrible bleeding, and who missed 47 days of school in one year, after doctor upon doctor told her it was one thing or another. Jacey had already fought off cancer, and now faced more health problems. Dealing with the multiple needs of her many children, Kelly still was able to fight the system, honor her maternal instinct which told her the doctors were wrong, and push and push not only to get a proper diagnosis, but also then health care coverage! Her insurer would not allow her to use the HTC!

Kelly Lynn Gonzalez implores
the audience to advocate and never give up

Well, that changed eventually.

Kelly is a powerful, emotive storyteller, and her presentation had many in tears. The energy level in the room, even following two hours of insurance lectures, was palpable. Kelly inspired many, I am sure, to rise up and become better advocates for their children. The audience was 60% families with VWD; an anomaly for us!

I thank everyone from Nevada who came to this symposium. Executive director Kelli Walters and her team did an amazing job handling this event. Thanks to our own Zoraida Rosado for organizing, shipping and set up. Thanks to Michelle Rice of NHF, and also thanks to Baxalta for sponsoring this!

Michelle Rice, NHF, speaks about
preserving healthcare options

Above all, thanks to every single audience member. Michelle and I agreed, from the podium, that in 7 years we have never seen a more attentive, engaged audience. (Well, Alabama was a close second!!) In appreciation, LA Kelley Communications is going to make a donation to the chapter for the wonderful audience. When you are a speaker, an attentive, receptive and engaged audience is everything.

Laurie Kelley with Renee Paper
in Puerto Rico, 2006

Renee used to tell me, “It’s not the hand you are dealt, it’s how you play that hand,” using an analogy fitting for a Las Vegas lady. In other words, you have VWD (or hemophilia). So what? The important thing is what are you going to DO about it? Renee was a no-nonsense, fix-it-now kind of lady. She never engaged in self-pity, and didn’t exactly coddle others. But she was compassionate. Not intimidated by anyone, she took the hand she was dealt (VWD and losing her ability to have children) and turned it into a national and then international crusade for better health care for those with VWD, especially women. Sadly, Renee passed away in November 2007 due to health complications. She is terribly missed. I feared for a long time there would be no one to fill her shoes; who could ever speak with that fiery passion? Who would have that dedication?

People like Kelly Gonzales give me hope.

Click here to learn more about Renee Paper, RN.


Amazing Book I Just Read


The Witch of Lime Street: Seance, Seduction and Houdini in the Spirit World  [Kindle]
David Jaher

It’s fitting to have read a book about Houdini on a plane ride to Las Vegas. We all know he was the master illusionist (much like David Copperfield, who I will see tonight at MGM, is today). But who knew the rest of the story? It’s fascinating! Following World War I, families were so grieved by the tremendous loss of life, they turned to seances and “spiritualists” to help them contact their deceased loved ones. One outspoken believer in contacting those in the afterlife was Sir Arthur Conan Doyle, the author of Sherlock Holmes! He traveled and spoke widely about spiritualism. It became such a hot topic, with so many engaged in it, that Scientific American decided to hold a national contest to see if anyone could prove that spiritualists could really communicate with the dead. On the committee was Sir Arthur’s good friend, Harry Houdini, who did NOT believe in spiritualism. As a master illusionist, he believed everything could be explained as a deception. And he successfully debunked many who claimed to have contact with the dead. But the hardest case was little sweet Mina Crandon, who lived on Lime Street in Boston, the wife of a very successful surgeon. She wasn’t a publicity seeker and didn’t want the prize money. And no one could seemingly detect how she was able to levitate a table, conjure spirits that spoke, command items that flew around the room. Without giving away this fascinating and sometimes lurid tale, this case destroyed the friendship between Sir Arthur and Houdini, made Houdini more famous, and yet reviled by the spiritual community, embarrassed the esteemed Scientific American publication, and brought to light even more bizarre facts than anyone expected! It is a riveting page-turner, extremely well written and informative, full of wild characters and celebrities, and the ending is a shocker. Read it! Five/five stars!

You Can’t Always Get What You Want

That was the tune sung at the latest Pulse on the Road in Baltimore,
Maryland on Friday, October 2! Speaking at the 12th Annual Insurance and Reimbursement Conference—an NHF gathering of social workers
and executive directors of local hemophilia organizations— speakers Laura Summer,
health care policy consultant, Michelle Rice, vice president of public policy
and stakeholder relationships at NHF, and yours truly spoke to this group of our nation’s
frontline defense, the people who handle insurance issues every day. Indeed,
when I asked the social workers how much of their time do they spend on
insurance issues, even I was shocked to hear “75%.” Health care is complicated
and complex; workshops like these help everyone share the journey, learn from each
other, and learn new things.

One way we learned was from role playing! We had two volunteers pretend to be consumers calling the payer (Michelle). Michelle tested them by deflecting their questions, providing wrong information and putting them on hold–a lot. 
Michelle really
set the tone. “For years we’ve been asking to be treated like everyone else.
Well guess what? Now we are!” Payers now look at us not the helpless victims of
a genetic disorder, but as patients with medical needs who have bills that must
be paid. Unfortunately, our former reasoning of “But, we have hemophilia! We’re
special!” is not going to work anymore. We need to get smart, savvy, and
strategic.
Michelle asks: Is
your request to the payer a question of access [to a particular brand of factor
or HTC or home care company]? Or is it a preference issue? “We can’t spend time
on preferences anymore. If you want homecare company A and not B, and B is not
in network, then you must use A, or pay a lot more for B.”
She reminded us
that if your desired factor brand is not on the formulary (the list of drugs
that the payer will cover), that doesn’t mean you aren’t going to get your drug;
you’ll need documentation from your medical provider, and it will cost you
more. And if your factor is not on formulary, check the major medical side of
our policy—it might be there, and might be covered.
Bottom line is
we need to accept a new reality in insurance.  We need a personal budget for out-of-pocket expense each
year. We need to read our insurance policies carefully and completely, each
year. We need to open and read those letters from the insurance company. No
short cuts!
Michelle
stressed that we must take responsibility for our own insurance situation, even
as the NHF, HFA and our local organizations continue to advocate for us on many
levels. It starts with each of us first and foremost. Start with your policy:
if you have private insurance, speak with your human resource department to get
answers. If on Medicaid or Medicare, visit your social work at your HTC.
You can’t always
get what you want, but you can read, document, question and hope! Working
together, we will get many things need and maybe even want.
                                                                                                                                               

Good Book I Just Read
Selling the Invisible by Harry Beckwith

Written in 1997, this book is a bit dated as it doesn’t mention email, cell phones or social media. But still, there are many good lessons to learn that are timeless classics. This quick read teaches why focus groups, value-price positioning, discount pricing, and being the best can fail; the vital need to focus on one message; the one emotion that most influences why your prospects will buy from you. Three stars out of five.

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.

Insurance Workshop in Nebraska: Pulse on the Road 2014

Kristi Harvey-Simi and Laurie Kelley

Warm air
greeted greeted us in Omaha, Nebraska on Friday as Zoraida and 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.
Kim Isenberg of Baxter Healthcare
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.
Michelle Rice of NHF
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!                 
Nicole Quinn-Gato of NHF
 

Pulse on the Road Stops in Maryland

Rocky Gap Resort
It was a gorgeous and warm fall day at the Rocky Gap Resort in Flintston, MD where Pulse on the Road (POTR) stopped to give the Hemophilia Foundation of Maryland its insurance seminar. About 28 families with bleeding disorders drove a long way to assemble for the weekend of fun. I had no idea Maryland, a little bit of land on the map, was so expansive and green. Zoraida and I passed farms and rolling hills under blue skies.
Emma Miller, executive director, and her capable team had everything and everyone organized and the weekend unfolded without a hitch!
Laurie Kelley presenting 
Michelle Rice of  NHF

    POTR is focused on empowering patients with bleeding disorders to handle insurance issues and learn about the Affordable Care Act. Basically, we’re trying to wake everyone up to some majot changes that could be taking place. So much can change, given that we face elections next month, and many states are suing to repeal the ACA.

      With speakers Michelle Rice of NHF, Kelly Fitzgerald of PSI, Tom Larmondra of Baxter Healthcare Corporation, which sponsors POTR, and Kim Winship, LSW at Johns Hopkins University, we were well covered with experts!
My short talk was on preparing to choose a healthcare plan, which is important to know as we will soon have “state exchanges,” websites where people can go to select the healthcare plan that us best for them. They will need this tool as the federal government will mandate that everyone have health insurance. 
Quickly and simply, I pointed out that it’s good to ask these questions in particular:
 •Is my factor covered?
•Is it covered under the
major medical or pharmacy benefit?
•Do I have a choice of more than one pharmacy
provider?
•Is my HTC in network?
•Do I need a referral to see a specialist?
•What services require prior authorization?
•Is durable medical equipment covered?
Tom Larmondra of Baxter

Michelle as always captures everyone’s attention with the NHF Insurance Toolkit. Audience members were asked to crunch numbers and calculate “John Doe’s” choice of an HMO or PPO plan, based on his history of medical usage last year. Very clever and audiences love this! I saw everyone crunching away and asking very good questions.

Kelly Fitzgerald of PSI, Kim Winship, LSW, Michelle Rice of NHF,
Tom Larmondra of Baxter, Laurie Kelley

When asked if everyone learned something new today, every hand went up. A great sign that we made our mark, and hopefully, more people will come away enlightened about how to protect their health care plan, and keep more dollars in their wallets!
Thanks to Emma and her team, and to Baxter Healthcare Corporation for sponsoring Pulse on the Road.
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