Pulse on the Road

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
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!
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
, 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
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.
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!
check www.kelleycom.com by December to see where we will be in 2015!
Book I Just Read
Justice for All
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 in Texas!

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, I might add!) 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
The event scored rave reviews from the looks of the 60+ evaluations
turned in. Our thanks to my team: Zoraida Rosado and Elizabeth Rosado, who
planned the morning well in advance, set up displays, tables and handouts, and
dissembled everything; to Michelle and Marla for sharing their expertise and
their weekend; and to Tom, for his expertise, and Baxter Healthcare, for
providing the funding for all the Pulse on the Roads, now in our 5th
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!

With Birdman!

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.

Laurie Kelley 

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!

Next stop? Houston in August!


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
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!
stop for POTR? Philadelphia in June!                 
Nicole Quinn-Gato of NHF
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