Michelle Rice

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: 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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