Pulse on the Road in Alabama!

We just
wrapped up a great weekend in Montgomery, Alabama, after a terrible week in
Boston. Zoraida and I were lucky to have no problems at the airport, given the
tight security, and arrived in sunny Montgomery Friday afternoon. We were
greeted by a wonderful display at the Renaissance Hotel: streamers of green and
purple, big Mardi Gras-style mask, and the warm hospitality of the Hemophilia
and Bleeding Disorders of Alabama staff. The theme: Unveiled… Our Future Revealed, a theme the HBDA will use all year long as they
raise public awareness of this rare and mysterious thing called hemophilia.
we were surprised by a lovely and patriotic display of fireworks right outside
our hotel window that night!
Michelle Rice presents NHF’s Toolkit
Saturday morning, while the kids were organized to be bussed to the local zoo,
we adults visited another kind of zoo—the world of health care reform! Our
session kicked off with a full audience of about 100 people with hemophilia and
their families. “Pulse on the Road” is a three-hour insurance symposium that
brings our newsletter Pulse to life.
This year we will visit six states; we’ve already been to New York for Albany
Days and Colorado for the annual meeting.
guest speakers were Michelle Rice, public policy director at NHF, of course,
and Marvin Poole, a senior reimbursement manage with Baxter Healthcare, sponsor
of this symposium.
Laurie Kelley with Vicky Jackson
opened with a review of the Affordable Care Act (ACA) which led to an explosion
of questions. The audience, attentive and curious, was hungry was answers. I
jotted down questions as they came:
Will your employer be able to deny you
due to hemophilia?
a.     Marvin replied no. Under the ACA, no
pre-existing condition exclusions are allowed. This is one of the beauties of
the legislation!
Will the “navigators” (the helpers who
will guide us using the new exchanges, now called marketplace, websites where
we can buy insurance) be neutral? Or will they work with the payers? Whose side
are they on?
a.     Michelle noted that they are not on
anyone’s side. They are trained to be neutral, and are there to help us
evaluate the cost versus the benefits of any given plan, to help us decide
which is best for us.
What are the essential health benefits?
a.     Michelle noted that certain packages
called essential health benefits (EHB) must be included in all insurance plans.
These are basic services that must be covered. But… the definition of what these things are may differ! For
example, ER coverage when there is an emergency. What’s the definition of an
emergency? For Michelle it might be an ear infection as she travels a lot. But
for a payer, it might be loss of life or limb!
Laurie Kelley and Michelle Rice
Are payers going to cap insurance for
premiums? I’m paying $900 a month!
a.     Marvin answered that there will be a cap
on copays, but premiums will be expected to rise.
Explain what the marketplace is.
a.     Michelle replied that these are web
portals (websites) created by the states that allow people to “shop” on line
for insurance plans. You can plug in your requirements and needs, and the
system will bring up various plans for you to compare. These plans will be
denoted by a cost-sharing scheme: Bronze, Silver, Gold, and Platinum. You can
choose one of these plans based on how much you are willing to pay. For
example, a Bronze plan might be 60/40; you pay 40%, with lower monthly
premiums. A Platinum might be 90/10, with high premiums but lower out of pocket
costs after that.
Attendees work on the toolkit
But Michelle noted that the maximum out-of-pocket
(OOP) costs to us, consumers, for health insurance through the marketplace
regardless of the plan are $6,200 for an individual and $12,000 for a family.
What counts toward it? Copays, coinsurance, deductibles related to EHB.
What about tiers? If you have a Platinum
with 90/10 cost sharing, even 10% of the cost of factor is outrageous.
a.     Michelle replied that our understanding
is that your OOP, even with tiers, goes toward that OOP max in the marketplace.
If you have private insurance, can you
still use the marketplace?
a.     Not if you have a large employer. As of
now, no.
With friend Kelly Champagne
What about Medicaid? What changes will
happen there?
Brian Ward, president of the
HBDA answered this one: Alabama is not currently managed Medicaid, but might be
soon. Almost certain of it. Managed Medicaid is when it is managed by a payer
like Blue Cross Blue Shield (BCBS) or Aetna, for example. It may have a PDL or
formulary which lists the drugs covered by your plan (know this one, for factor!).
Michelle said it is very much like a Medicaid HMO: it uses a Primary Care Physician
(PCP), and in network hospitals and physicians. Coverage will be the same for
services but the networks will be different.
Can payers reject prophy on Medicaid
managed care?
a.     Michelle: NHF hasn’t seen formularies yet
or restricted prophy. They will restrict factor provider (meaning specialty
pharmacy). They seem to “get” prophy for kids, not so much for adults and may
argue that coverage.
Laurie with Tricia, a mom with
a child with hemophilia
b.     Michelle also replied that most changes
in Medicaid are not related to ACA. Managed care has been with us for years,
and now Medicaid is trying to use it for more groups like hemophilia. Sometimes
managed care is better for us all, but the biggest problem for us all is
coverage for factor.
mom lamented, “My son uses $30,000 a month and he’s only 2 year old. I can’t
have caps!” Brian then stressed: tell us your stories, your struggles, because
we will then tell Michelle at NHF and NHF will can set policy.
this lively session, I then spoke for 20 minutes about the importance of being
able to choose your health care plan, followed by Michelle Rice’s excellent
hands-on seminar about NHF’s toolkit, which has attendees crunch through numbers
to calculate the different between two plans for “John Doe,” who must choose
between two plans. Wow, the numbers were flying, and attendees quickly
calculated the costs. This is a great exercise for families who feel
intimidated by insurance policies and questioning charges.
Hemophilia Unveiled!

was an engaging, excellent three hours, filled with inquisitive audience
members (every speaker’s dream!), and much information sharing. It is a lot to
absorb but family members came away with new tools, new ideas and more solidarity.
to the Hemophilia and Bleeding Disorders of Alabama for inviting us, to Vicky
Jackson, executive director extraordinaire and her team, and Brian Ward,
president. And to Baxter Healthcare for sponsoring Pulse on the Road and to all
the companies who supported this wonderful weekend!
more information on insurance, download Pulse on the Road for free at https://www.kelleycom.com/newsletters.html.
Great Book I Just Read
by Frank McCourt
 Poignant, page-turning and superbly written story, based on the author’s life, of growing up impoverished in Ireland during World War II. If you’re Irish, you will especially love the historical references, phrases and cultural mind-sets, things we all heard growing up. But mostly this is a book about how a child thinks and perceives his world when he is trying to survive harsh poverty, hunger, loss of siblings, alcoholism, an absentee father and the brutal reception he receives from most adults, including those of the Catholic church. Five/five stars. 

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