Learning from (Near) Catastrophe

Americans learn from catastrophe,
and not from experience. Teddy Roosevelt

That’s a great quote by one of my favorite presidents; I feel like we have been having a bit of a healthcare catastrophe now in Washington DC. And it’s a great learning experience. Unfortunately, it comes with a steep price.
 
Back in 2010 we began warning the hemophilia community about coming changes in healthcare reimbursement through our event Pulse on the Road, and our newsletter Pulse. Insurers were balking at the high cost of treatment and care,
especially for those with chronic disorders like hemophilia. While for years insurers carefully sidestepped irritating and challenging the hemophilia community about prices of drugs—perhaps because of our tragic history with contaminated blood products—they began slowly applying the screws to what they would and would not cover . It shocked us then—how dare they? But nothing seems to shock us now, from the antics of the current administration to the all out assault on the
gains for those with chronic disorders through Obamacare.
 
Through Obamacare (formally, The Affordable Care Act [ACA]), our community finally enjoyed no lifetime limits, no annual limits, no discrimination through pre-existing conditions, and children would stay on their parents plan, married
or not, till age 26. Medicaid coverage was expanded in many states to include more people in need. We also warned that this came at a price, and this is where the conflict lies. Who will pay for all this? It’s like giving a teen a credit card with no limit. The spending has to stop somewhere and costs must be contained.
 
The Trump Administration introduced it own bill, to repeal Obamacare. The Better Care Reconciliation Act sought to unravel some of the gains, including rolling back the individual mandate (that each American must have insurance, with notable exceptions), shrinking the Medicaid expansion, offering massive tax cuts, and reducing federal funding. The Congressional Budget Office, which is bipartisan (meaning it doesn’t favor one party or another) calculated that 24
million Americans would be uninsured by 2026 if this bill passed. Premiums would drop to 20% lower but deductibles (out of your pocket) would increase. Insurers would no longer have to cover Essential Health Benefits. Why do some Republicans want it? It cuts $600 billion in taxes that help pay for Obamacare, which covered extended coverage costs through taxes on couples earning more than $250,000.
 
Senate Majority leader Mitch McConnell postponed this bill after the scathing assessment by the CBO. In one poll only 17% of voters approved it! And senators listened to their voters. In a nailbiting session, the Senate voted early Friday morning to block the “Skinny Repeal.” John McCain (R-AZ) stole the show by casting his vote “No,” which led to an audible gasp.
My friend Deena from Arizona, whose son has hemophilia and inhibitors, wrote on Facebook, “I heart John McCain! Thank
you Senator for doing what so many didn’t and thinking of your constituents! Once a hero… Always a hero! I’m so proud to be an Arizonan! Pre-existing conditions just got a post-existing boost!”
 
John McCain flew all the way to Washington DC to vote a mere two weeks after brain surgery for cancer. Stunning
dedication. Our community was thrilled overall, and so many rose to call, fax and tweet their senators not to vote for this bill. I saw NHF, HFA, and all the chapters rallying around one battle call, “Vote no!”
And it came to pass. We have a reprieve.
But it’s far from over. The House Republicans are angry with the Senate Republicans. The Trump administration seems at war with itself, firing appointees left and right. I hope Teddy Roosevelt was right that we learn from catastrophe, or near-catastrophe. We need to learn fast because there will be more skirmishes and battles, as we continue to fight to protect healthcare coverage for our loved ones with bleeding disorders.
 
Congress is on vacation now, and I am leaving today for Utah, to escape to the wilderness for a few days to visit my
daughter, who proudly works for the US Forestry Service, and away from news about the reality-TV drama that is Washington DC these days. Score one for us… for now.
 
Read more about what this means for bleeding disorders here: http://www.patientservicesinc.org/News/ArticleID/1149http://www.hemophiliafed.org/
https://www.hemophilia.org/

AHCA: Crime and Punishment

Get ready to rumble.
The hemophilia community overall is not just deeply disappointed with what’s
happening in Washington DC regarding healthcare, it’s shocked, angry … and good manners prohibits me from using cruder language. It
won’t take the proposed healthcare bill lying down. Been there before when
government failed our healthcare in the 1980s.
The American Health
Care Act (H.R. 1628)
passed the House of Representatives on Thursday, May 6. Facebook lit up with
angry comments from the community when it knew the bill was headed for a vote.
Some people went so far as to threaten to unfriend anyone who didn’t agree that
this bill was a threat to our coverage and health. Some went so far as to say
that if you didn’t take a stand, you were “privileged,” and that the bill must
not impact you. Strong words and convictions. Advocates urged everyone, as
people with an expensive preexisting condition, to contact their congressperson
and ask them not to vote for this.
The AHCA’s stated overall
goal is to reduce federal spending over time. But it also carries a significant
risk of reducing the number of people covered—the Congressional Budget Office estimates
24 million by 2026— and their benefits.  The estimated federal savings of
$300 billion must be officially assessed by the CBO in order to pass in the Senate. And to complicate matters, the Senate may write
its own version of the bill instead of voting on the current one.
The key components of the ACA
(“Obamacare”) that were favorable to those with preexisting conditions like
hemophilia were: eliminating lifetime caps, keeping children on parents’
insurance until age 26, eliminating preexisting condition discrimination,
creation of the Marketplace exchanges, and expanding Medicaid.
Some components of the
AHCA that are of concern include:
• Giving states the
ability to run their own Medicaid program,
• Allowing states to
opt out of any mandate that insurers not raise insurance costs for Americans
with preexisting conditions
• Allowing states to
create a work requirement for people on Medicaid.
• Repealing the
employer mandate
• Repealing the tax
penalty for the ACA’s individual mandate
• Cuts $900 million in
taxes for individuals who earn over $200,000 annually, while also cutting $1
trillion in subsidies for Medicaid.
• Providing $100
billion under the “Patient and State Stability Fund” to help states manage some
of the costs of the most expensive patients
• Permitting
states to allow insurers on the exchanges to charge more (with no upper limit)
for patients with pre-existing conditions, although they still cannot be
technically denied coverage
• Allows insurers on
the exchanges to raise rates more for older people, penalize people who go more
than two months without continuous  coverage, and replace Obamacare’s
income-based and cost-based subsidies for exchange coverage with a tax credit
that only adjusted for age.
In today’s TV show This Week, House Speaker Paul Ryan
commented, “Under this bill, no matter what, you cannot be denied coverage
if you have a preexisting condition.” 
He tried to reassure viewers by adding, “You
can’t charge people more if they keep continuous coverage. The key of having a
continuous coverage provision is to make sure that people stay covered and they
move from one plan to the next if they want to. It’s kind of like waiting until
your house is on fire to then buy your homeowner’s insurance. You want to make
sure that people stay covered to keep the cost down.”
In response to the
passing of the House bill, Joe Kennedy III said this:
“In
a world view that scapegoats the Struggling and the Suffering, that sees fault
in illness, that rejects the most basic universal truth of the human existence:
that every single one of us, one day, will be brought to our knees by a
diagnosis we didn’t expect, a phone call we can’t imagine, and a loss we cannot
endure. So we take care of each other because but for the
grace of God there go I one day. And we hope that we will be shown that mercy
too. It is the ultimate test of the character of this country confronting our
chamber today. Not the power we give the strong but the strength with which we
embrace the weak.”
Facebook has been not
only a place to vent and share feelings and facts, but also has been a great
way to advocate. Facebook friend Randy wrote:
I just faxed my US
senators using Resistbot. Send a text message to 504-09 and put RESIST as the
message. Resistbot generates a fax to your senators and representative. (A fax
is apparently more effective than a phone call.) You’ll get a few prompts back.
We need them to vote NO on repealing the ACA. Lives are at stake – not to
mention wallets. Please copy, paste and share.
Facebook friend Jeff wrote: Insurers – not the government – define what pre-existing
conditions are, and they are free to be as liberal with their definitions as
they wish…
And
the only good thing to come out of all this so far? More people are becoming activists.
People are contacting their congressperson, some for the first time in their
lives. Young people are reading, learning, talking a stand. Conversations get
heated but also shed light; debates may divide but also deliver.

And
our community, as always, will take a stand against threats to our hard-earned healthcare
gains. Watch the news for continued debate on healthcare reform, and see you on
Facebook!

Rx for Post-Inauguration Healthcare Uncertainty

To live in freedom, one must grow used to a life full of agitation, change and danger. — Alexis de Tocqueville

The inauguration is over and we have a new president. The day after the inauguration, mass protests for women’s rights occurred in major cities across America.  There’s a predominant feeling of fear and uncertainty in America now, perhaps more so than with any other new president that I can ever remember. Some of it is reflective of the times we are in: wars in the Middle East, radical terrorist groups, manufacturing decline and job outsourcing, dictators with their fingers on threatening global weapons and a seeming hatred for America. Uncertainty clouds our future look at the economy, international stability, and above all for families with bleeding disorders, the fate of the Affordable Care Act.

I recall in 2008 we hit the road to present our symposia “Pulse on the Road” to several states each year, to alert our community to the coming insurance reform. In 2009 so many audiences we met with had no clue what was about to happen. Insurance caps, copays, tiers, PBMs, formularies, Medicaid changes, preauthorization—this was all new stuff. Around 2011, we noticed a marked change. Audiences were picking up all the terms and concepts. Why? They were beginning to experience the changes. Some of the changes were brilliant: no caps! You could get as much factor as you needed. No pre-existing conditions! Really, anyone with hemophilia should be able to get insurance. And limits to out-of-pocket costs. The Medicaid expansion gave people in some states eligibility. Millions of people accessed healthcare that didn’t have it before.

But the “affordable” in Affordable Care Act was always suspect to me. Who was going to pay for these changes? No annual caps and no lifetime limits meant we could get the drugs we needed, a blessing for those with chronic disorders. The parents of children with hemophilia who burned through $1 million of coverage in a few years would have had to change insurance or change jobs even. Some parents simply couldn’t do that. Now, no longer, thanks to the ACA.

But we saw that insurance companies—payers—were being hit with the skyrocketing costs as a result. Their countermove was not surprising: cost-shifting to consumers. This manifested in different ways: restriction of choice. You suddenly couldn’t get the specialty pharmacy you wanted. Next came restrictions of drugs to a formulary. You could get factor but maybe not the one you want. Higher copays—way higher. Higher premiums. The benefits that seemed so great suddenly had a consequence that bit into our disposable income while restricting access to some of the therapies we wanted.

The ACA became a double-edged sword. Payers were fighting back.



President Trump, as he pledged, on his first day on the job, issued an executive order addressing the Affordable Care Act, basically seeking repeal of it. Now, nothing can happen overnight. The administration needs heads of the departments of Health and Human Services, Treasury and the CMS Administration and IRS Commissioner to be confirmed in order to act on this executive order. This will take time.

While we wait, the best advice our Pulse on the Road team kept giving our audiences in these truly uncertain times:

1.     Read your insurance plan every year at enrollment time. So much is changing so fast, and you must know the print, and the fine print. Don’t ever assume that just because you have the same employer, same insurer and same plan, things are staying the same.
2.     Calculate annual out-of-pocket costs. You need to have a few thousand saved up just to cover rising coinsurance, copays and deductibles.
3.     Sign up for your factor manufacturer’s co-pay assistance program. They all have them, and from what the manufacturers tell me, a lot of people in the bleeding disorder community are not taking advantage of them. Big mistake!
4.     Sign up for a free factor program. You can get limited free trial doses of a different product from what you are on; or your factor manufacturer may have a compassionate program to keep you, the loyal customer, with factor until you can get insurance to cover you.
5.     Talk to your social worker at your HTC and/or your state hemophilia organization to get up-to-date information about what’s happening in your state, with your plan.

It’s going to be an uncertain time for a while, but the bleeding disorder community is one of the best medical patient communities for advocating for its needs, and for keeping informed. Sign up at www.hemophilia.org or www.hemophiliafed.org for current news about the ACA, and health care reform and repeal as it relates to bleeding disorders.

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
(Ghostbusters?).
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
year!
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.

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
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