January 2014

Welcome to the Jungle, I mean Marketplace! Part 2

At NHF’s Social
Worker Insurance Workshop in Baltimore on January 16, there were some great questions
asked from the audience concerning the Marketplace. Social workers know they
will most likely be the first line of defense for patients with bleeding
disorders facing the many challenges of the ACA. Here are some questions asked
and other snippets of information from the workshop.
Very cool illustrator maps out the discussion
Q. What if you
don’t like the insurance plan options in the Marketplace. How do you file a
special appeal [concerning coverage]?

Go to Healthcare.gov; there is a link for an appeal. Appeals are
worthwhile because sometimes codes are entered in wrong, and sometimes people
get approved for procedures and benefits that were originally denied.
Is there a limit
to the number of appeals?
Laurie with social worker
Ed Kuebler, Texas
Q: But after you
pick a plan and don’t like it, what if you just don’t pay the next month’s
premium? Won’t you just get canceled and then you can choose another plan? Isn’t
that easier than an appeal?
There is an open enrollment time, so you can’t choose to switch
outside that time period. After March 31 you can’t get into a “QHP” (an insurance plan that is certified by the Health
Insurance Marketplace, provides essential health benefits, follows established
limits on cost-sharing (like deductibles, copayments, and out-of-pocket maximum
amounts), and meets other requirements.)
Joanna Gray, of CRD Associates told us that the ACA says HTCs must be included in-network. But… plans don’t have
to include any specific medical procedure. They only need to cover “sufficient”
providers, and they don’t say who those providers are. The ACA hasn’t come through
in its promise. NHF says be careful! Don’t pick a plan that doesn’t include
your HTC or product, because now it’s legal for providers to avoid HTCs. We can’t
change the policy for this year. Maybe next? We need to complain to get
changes made
Mike Bradley (Baxter), Laurie
Kelly, and Derek Robertson

(Apogenics, Inc.)
NICOLE of NHF said that every state has its own
definition of EHB (essential health benefits). So picking a plan is harder, because
there are more plans, and picking one that covers what you need is hard.
Q: To use the Marketplace, you must be a legal
resident.  What happens to legal immigrants,
who are not citizens? In Nevada, they are currently covered under high-risk
pools but will lose this soon (the pools are closing). Are there alternatives?
No. You can still get emergency medical through Medicaid; and of course, anyone
can buy insurance in the commercial marketplace.
Nancy Hatcher and
Ed Kuebler again!
JoAnn Volk of The Center on Health Insurance
Reform, Georgetown University Health Policy Institute, said that
six states will not enforce the ACA: Alabama,
Missouri, Oklahoma, Texas, and Wyoming. The ACA gives primary responsibility to
states to enforce the rules, but there are 10 state benchmarks (Essential Health
Benefits) that must be followed, and
will be reviewed by the feds.
If you find a QHB but it doesn’t include factor,
JoAnn thinks that the appeals process will work, recommending that people get
their drugs for 20 days, during the appeals process, even if they are not on
Q: How do I find the benchmark plan for my
All benchmarks
are listed in the state insurance department website. www.cms.gov/CCIIO/Resources/Data-Resources/Downloads/Vermont
 (for example)
Q: What’s the advantage of going into the Marketplace?

The advantage of going into the Marketplace is subsidies; you can be eligible
for discounts within limits. To buy into a Marketplace, you have to be physically
in the state, not incarcerated and be legally present. There are no other
Q: When we couldn’t find what we were looking
for (was our hematologist covered), and we called the website, we couldn’t get
any help.
Don’t call
the health.gov website. Call the plan provider. Sometimes it’s best to work
with your HTC contracting department! 
They will know who is in network.
And there is so much more information! Be
sure to keep reading your HemAware (from NHF), Pulse (from us), and tap into your
chapter’s or your local hemophilia organization’s efforts to educate their
families about insurance changes. Lots happening; don’t miss deadlines and
opportunities by not staying on top!
Great Book I Just Read (Again)
Ada Blackjack: A True Story of Survival in the Arctic  by
Jennifer Niven [Kindle]
A secret exploration to Wrangle Island, in
the Behring Sea, in September 1921 goes terribly wrong when food runs low and
sea ice keeps a relief ship from rescuing the stranded four young men and one 25-year-old
Eskimo woman trapped there. The trip sets off an international crisis when
Russia, Great Britain and the US learn that the trips leader, the opportunist and
greedy explorer Vilhalmur Stefansson, who never even went, was trying to claim
the island for Canada. Only Ada survives the horrible conditions, and her
return sets off a media firestorm. Did she kill her companions? How did she survive?
Diaries are stolen, Ada is hounded and used by the press and her own sponsors.
She becomes at once a hero and a villain. Fantastic read and Ada will amaze you
with her spirit and ingenuity. Her real survival started when she returned home.
Four/five stars

Welcome to the Jungle, I mean, Marketplace

This past week I
attended a useful and interesting meeting, NHF’s Social Worker Insurance Marketplace Workshop (funded by Baxter Healthcare and Pfizer Inc; thanks guys!).
Together with about 80 social workers from HTCs around the country, and some
chapter leaders, we listened to various consultants and government
representatives speak primarily about the “Marketplace,” the website of the Affordable
Care Act that allows people to choose a healthcare plan.

We’ve all heard
about the difficulties in dealing with this website— healthcare.gov—such as the
crash, and various other glitches. The good news is that many of these glitches
have been fixed; and now it’s time to get our bleeding disorder community on
board. Healthcare insurance is mandatory now; all US citizens (with notable
exceptions) must have insurance. The website is created to help people find the
lowest cost insurance that also provides all their essential healthcare needs.
Crafty Posters were created to help us visualize; good idea,
we needed the help!

There is plenty
of assistance in navigating the website. We actually tried the website live,
and it was pretty interesting, and yes, we even got stuck once or twice! For
us, we were stuck trying to find out if our HTC hematologist was in-network.

Each website
will have on-line or Internet guides, to help you live. They are called various
names: Assisters, navigators, certified application counselors, in-person
assistance, marketplace call center, agents and brokers. Most people are used
to calling them “Navigators.” (I can’t help but think of “Engineers,” a la
Ridley Scott’s Prometheus)
Navigators, Engineers: whatever you
call them, they are here to help

Jim Romano, from Patient Services Inc (PSI), gave a
presentation about how PSI has been chosen to train qualified applicants to
become  Certified Application Counselors (CAC), to
help people navigate the Marketplace. This is truly a great coup for PSI, and I
can’t think of any other group better qualified to train. PSI will train CACs
in different states, and pay their fees (yes, you have to pay for the pleasure
to become a CAC to help people navigate their state Marketplace! One point from
an audience member who underwent the training: the training wasn’t very
hemophilia-focused, and needs to be more focused.

Jim noted that there were still some
difficulties to overcome in each state. Ed Kuebler, a social worker from Texas,
slyly asked, is the difficulty level in some states… political? This garnered
many laughs! Ya think?

There are many
marketplaces, as each state as their own. All the marketplaces have different
funding sources, based on what type of marketplace it is:

FFM: Federally facilitated marketplace
SPM: State partnered marketplace. The federal government has some role
in this.
SBM: State based marketplace and the fed has no role in it.
How many people
have enrolled since the site was unveiled in October?
Dec 28: 6 million Americans gained coverage through Marketplace and Medicaid
2.2 million of those enrolled in private plans
80% received help in paying for premiums
53 million visits to healthcare.gov and state marketplace websites
11 million calls to the federal and state call centers
healthcare plans are designated by “metal.” The more precious the metal, the
higher priced the plan, but also the more coverage. Enrollment by Metal?
are choosing Silver plans
20% Bronze
13% gold
7% Platinum
1% catastrophic plans
Ed Kuebler thinks we need more help than
navigators (kidding–a gift from a friend)

There are still
consumer problems using the Marketplace:
inability to complete application on line

get “stuck” (freeze) or lost
is not transmitted after the plan is submitted
not sure you’re insured, call insurance company (not the website) to check
you don’t pay 1st month premium by certain date, you will not get
Don’t despair! I
found it actually fun to hop on Colorado’s state Marketplace and select a plan.
Another useful
website is Marketplace.cms.gov, which has FAQs, tip sheets, paper application,
and materials in Spanish. And Healthcare.gov, which does premium estimate, on
line application. When you log on, you will see this banner!
Michelle Rice (L), Mary Garvey (R) of NHF; Tiara of PSI (C):
all great speakers and resources!

Enroll by February 15 for
coverage starting March 1
So contact your
social worker for help if you are not yet enrolled; don’t miss the deadline!
Next week I will
cover more of the NHF Social Worker Insurance Marketplace workshop.

Factor XIII Patients Get New Treatment

This is going to be quite a year with potentially new products.
Here’s one to start the year off right!
The FDA has approved Novo Nordisk’s Tretten® (coagulation
factor XIII A-subunit [recombinant]) for routine prophylaxis of bleeding in
people with congenital factor XIII (FXIII) A-subunit deficiency. This is one of
the rarest inherited bleeding disorders, with an incidence of 1 in 1 million to
1 in 5 million. 
FXIII is composed of two subunits, A and B, with genes on two
different chromosomes. FXIII deficiency is usually caused by a deficiency of
the A-subunit. In the absence of FXIII, loosely formed clots are developed,
leading to bleeding complications similar to those in severe hemophilia A. Tretten
is the only recombinant treatment for the disorder 
Why does this matter? Patients with
congenital FXIII A-subunit deficiency have a lifelong susceptibility to
bleeding, including intracranial hemorrhage (spontaneous bleeding into the
brain), which could be life-threatening if untreated.
For more info: TRETTEN-US.com

Great Book I Just Read

Rebecca by Daphne du Maurier [Kindle]

Rebecca is a gothic romance/psychological
thriller, much along the lines of Jane Eyre, that skillfully transports the reader
into the early 1900s: a young bride (never named) narrates
the tale, about coming to the famed estate of Manderley, as the new bride of middle-aged
Maxim de Winter, whose first wife drowned in a mysterious boating accident only
a year ago. Rich in character, thought and detail, transfixed on the
lush countryside, landscaped grounds and endless ocean as the story progresses.
The mansion seems haunted by the first wife—Rebecca—and every act, every word
by everyone, including Max, seems to scream how missed the charming and
stunning Rebecca is, how hopelessly inadequate the unsophisticated, young new
bride is, until the bride considers ending her life. But then …Things are not
at all what they appear. Through subtle hints and plot twists, the real story
emerges bit by bit to an amazing and gripping ending. The Hitchcock movie by the same name is also fantastic.  Four/five stars.

Snake Charming

My daughter Tara gave me a great book for Christmas called The Lizard King (see review below). Not about Jim Morrison this time, but about the seedy “underbelly” of the reptile smuggling business in the 1970s. The book mentioned the historical origin of the logo of the snake wrapped around a staff, which we all recognize in medical arenas, but seldom ask where this came from. So I thought I’d share; I certainly stared at it plenty of times on my son’s Medical Alert bracelet when he was a child.

I used to think it was from the Greek God Mercury’s staff, but I was wrong!

So from Wikepedia (http://en.wikipedia.org/wiki/Rod_of_Asclepius):

In Greek mythology, the Rod
of Asclepius, sometimes also
spelled Asklepios or Aesculapius, also known as the asklepian, is a serpent-entwined rod wielded by the Greek god Asclepius, a deity
associated with healing and medicine. The symbol has continued to be used in
modern times, where it is associated with medicine and health care, yet
frequently confused with the staff of the god Hermes, the caduceus. Theories have
been proposed about the Greek origin of the symbol and its implications.

In honor of
Asclepius, a particular type of non-venomous snake was often used in healing
rituals, and these snakes – the Aesculapian snakes –
crawled around freely on the floor in dormitories where the sick and injured
slept. These snakes were introduced at the founding of each new temple of
Asclepius throughout the classical world. From about 300 BC onwards, the cult
of Asclepius grew very popular and pilgrims flocked to his healing temples
(Asclepieia) to be cured of their ills. 

The original Hippocratic Oath began
with the invocation “I swear by Apollo the Physician and by Asclepius and
by Hygieia and Panacea and by all the gods …”

But why a snake? The significance of
the serpent has several interpretations:

1. the shedding of skin
and renewal is emphasized as symbolizing rejuvenation
2. the serpent is a symbol that unites
and expresses the dual nature of the work of the physician, who deals with life
and death, sickness and health. 
3. The use of drugs can help or
harm, as reflected in the meaning of the term pharmakon, which meant
“drug”, “medicine” and “poison” in ancient Greek. Products derived from snakes had medicinal
properties, and in ancient Greece, at least some were aware
that snake venom that might be fatal if it entered the bloodstream could often
be imbibed. Snake venom appears to have been ‘prescribed’ in some cases as a
form of therapy.
Really fascinating; something new to know as you start your new year! And if you want a great read, see this…
Great Book I Just Read
The Lizard King by Bryan Christy
A fascinating story about the illegal smuggling of endangered reptiles into the US in the 1970s. This reads like a crime thriller, and there are indeed many parallels to the drug trade, including mafia, “mules” and the feds. How one many mostly built up an incredible multi-million dollar business smuggling reptiles into the US, while being tracked for years by one man in particular by the government, in an attempt to set up a sting. With its surprise and poignant ending, this would make for a great movie! 
Four/five stars.

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