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?
No.
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
formulary.
Q: How do I find the benchmark plan for my
state?
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
limits.
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

Spotlight on Inhibitors: Novo Nordisk CEO Visits US


Last week I had the unique pleasure to meet, along with three other community patient representatives, the CEO of Novo Nordisk, Lars Rebien Sørensen, in the Princeton, New Jersey offices of Novo Nordisk US. To my knowledge, this is the first time he has met with patients from the American hemophilia community. Novo Nordisk is a leader in diabetes therapies, and also the only provider of recombinant factor VIIa for the treatment of inhibitors in hemophilia.

(Photo, left to right: Eddie Williams, Ashley, Schlander, Jurek Gruhn, Laurie Kelley, Mike O’Connor, Lars Sørensen)

With me were Mike O’Connor, chair of NHF and former person with hemophilia—Mike is one of only a handful of people cured of hemophilia through a liver transplant. I’ve known Mike for many years. Also attending were Schlander and Ashley, two great ladies who both served with me on the Novo Nordisk Consumer Council.

From the Novo Nordisk side, we also had quite a few attending, including Jurek Gruhn, President, and Eddie Williams, Vice President, Novo Nordisk US.

So we had a nice reunion as colleagues and friends, and then sat down to a working lunch.

I had learned a few things about Lars before meeting him, such as his passion for cycling. He competes in the Death Valley biking race each year, which sounds terrifying. I’ve read about the infamous ultramarathoner Dean Karnazes and his running Death Valley–his sneakers literally melt on the tar in the 120 degree heat so he runs on the white strips on the highway, in a white reflective space suit to deflect the heat. Hard core athletes. I had just bought my first racing bike two years ago, and we chatted about biking, though I admit I am a bit intimidated by its engineering, and after taking a spill on a major road.

After introductions, I offered some statements from inhibitor families who wrote in a few days before to express comments directly to Lars:

Doris wrote: “Thanks to NovoSeven, my husband was able to have successful hip replacement surgery last September 1. Not in his wildest dreams would he have ever imagined that he would be able to have surgery and live through it. We just want to thank you for developing this wonderful product.”

Karen wrote: “What would I say to the CEO of Novo Nordisk, Lars Sørenson? Well, first and most importantly, I would say thank you from the bottom of my heart. Our son, Michael, now 17, wouldn’t be here without NovoSeven.” And John wrote, “You might tell Mr. Sørensen how grateful our family is for the $2,500 scholarship our son received from his company this year. When you have a bleeding disorder and are used to physical trials and disappointments, receiving a scholarship is a huge lift.”

Some also wrote and asked about the high cost of the product. We had a discussion about healthcare reform, as Mike was just back from NHF’s Washington Days, where 350 of our community attended. Mike reported that the discussion was all about eliminating lifetime caps and pre-existing condition discrimination. With no caps, of course, cost of product would not be such a problem for so many.

Lars and his executive team listened intently, especially about the daily realities of living with inhibitors, which Ashley shared. Infusing every two hours, as prescribed, is very disruptive. He shared a slide that showed new Novo Nordisk products in the pipeline, and one of these is a long acting version of NovoSeven. (See also our latest issue of PEN which details all the new products being explored: http://www.kelleycom.com/newsletter.html)

We wish to thank Lars Sørenson and his team at Novo Nordisk for the privilege of meeting, and applaud his spending time with members of the community, to hear about their needs.

Of our meeting, Lars and his team writes:

We had the privilege last week to meet with members of the US hemophilia community. For those who follow Laurie’s blog regularly, you probably know a bit about this meeting. Novo Nordisk is listening….listening to the wishes, needs, concerns and challenges of people who take our medicines and their loved ones, the physicians who care for them, advocacy groups who drive for change, policymakers who govern how care is delivered, and our employees who make it possible for us to do what we do. We are doing this because we want to be a better company— a better healthcare partner.

It was a very enlightening discussion with Laurie, Michael O’Connor, chair of NHF; Ashley, a mom of two young boys with hemophilia and inhibitors; and Schlander, a woman who cares for her older brother with hemophilia and inhibitors. We were very moved by the discussion, and reminded why it is so important to stay connected to those we serve. Our only regret was that we couldn’t meet personally with more of you. But thanks to Laurie and her network, we did hear from many of you. Laurie shared letters from several of you and the “wish lists” you provided. We know that the challenges and decisions you face are extraordinary and even overwhelming at times. We heard you. You have our promise to strengthen our commitment to you and do our best to expand it where we can.

Sincere thanks and warm regards,

Lars Rebien Sorensen, CEO and President, Novo Nordisk A/S
Jurek Gruhn, President, Novo Nordisk US
Eddie Williams, Vice President, BioPharmaceuticals, Novo Nordisk US

Great Book I Just Read
Ada Blackjack: A True Story of Survival in the Arctic by Jennifer Niven

Another polar survival story (I have a huge collection) and this one is brilliant. But I’m a fan of Niven’s anyway. We pick up after the disastrous Karluk expedition of 1913. Explorer and unethical, shameless self-promoter Vilhjalmur Stefansson is planning a new attention-getting scheme in 1921: to sail to, explore and claim Wrangle Island for Canada. He lures four men into his service (two who have never stepped foot in the Arctic!), with nebulous contracts, inadequate provisions, sickly sled dogs and one impoverished, 23-year-old Eskimo woman named Ada Blackjack, to serve for a year on Wrangle Island. The young men are starry-eyed and eager to make their names; Ada simply wants to earn enough to help get her five year old son treatment for his tuberculosis.

Despite Stefansson’s assurances of plentiful game, the uninhabited island is almost barren. When winter sets in, they are tested as never before in their lives. And Stefansson, who didn’t even go, simply puts them out of his mind as he continues to do speeches and scheme new schemes. Eventually starving, three of the men head out to get help, leaving one behind seriously ill with scurvy, and Ada. The story of how she fended for herself should give anyone courage; she survives, but only to face a media circus surrounding the events of her two-year stay. She is hunted, harassed and used. The aftermath of the trip is as amazing as the survival story itself. Survival of a different kind, from the blood-thirsty public and money-hungry rescue operators. This is an inspiring story of a dignified woman who survives horrific circumstances, and is immortalized forever by Niven. And rightly so. Three stars.

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