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/

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:
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…
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.

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

Insurance Buyer Beware!

While catching up on some insurance reading, I came across this article, which gives some food for thought. I’ve been giving insurance symposia around the country, and we have been focusing this year on the “Marketplace” websites, but this never even crossed my mind!

“Buyer Beware: Obamacare creates an opening for confusion and scams”

Kate Pickert
Government Bureaucrats aren’t the only ones preparing for a key component of President Obama’s signature health care law that goes into effect this fall.
Health care exchanges, the marketplaces where people can buy soon-to-be required insurance, launch Oct. 1, and experts warn that their debut
could create a prime moneymaking opportunity for illegal scammers and others looking to capitalize on consumer confusion. “There are people licking their chops and saying, ‘A sucker is born every minuet,’” says Elizabeth Abbott of the consumer group Health Access California.
There are two main types of potential snares for consumers: outright cons and insurance-like plans that give the impression of offering
more coverage than they actually provide. Regulatory agencies are already on high alert for fraud. Both the Federal Trade Commission and the Better Business Bureau have posted warnings about Obamacare-related identity theft. And in Pennsylvania, one enterprising insurance broker set up a website with the official state seal and the title Pennsylvania Health Exchange. The site was removed after a warning for the state insurance department.
Some quasi-insurance products expected to proliferate come October are ‘discount medical plans,” which promise lower health care costs in exchange for a recurring fee. Many of these plans lure customers with language that implies comprehensive coverage, but the reality is far more limited.
“The problem is, people pay the money, buy a plan, and when they get sick, they find out they don’t’ have the financial security they thought they had,” says Minnesota attorney general Lori Swanson, who has sued several discount medial plans for deceptive market practices. Consumer watchdogs are also wary of plans that reimburse consumers with set amounts for doctor visits or hospital stays, regardless of the actual costs.
Obamacare bans some forms of skimpy coverage, but with enforcement left to the states—some of which are less than enthusiastic about
the law—don’t count on those misleading plans disappearing overnight. “Will the states crack down on them?” asks Timothy Jost, a law professor at Washington and Lee University and an expert on insurance regulation. “Well, a number of states
aren’t enforcing the Affordable Care Act at all.”
Time August 19, 2013Great Book I Just Read
Into the Abyss: An Extraordinary True Story [Kindle]
Carol Shaben

A small commuter plane goes down on a subzero night in 1984 in Canada; only four of nine people survive: the 24 year old pilot, the first Muslim politician in North America, a policeman and his handcuffed prisoner. The next 36 hours reveals each man’s character, impacts them for life, and bonds them to one another for life. The prisoner saves the lives of the other three and becomes a national hero. This amazing story, expertly told, delves deep into the minds and hearts of each man before and during the accident, and follows them 20 years later to see what has become of them. The incident helped to change Canadian aviation. The author is the daughter of the politician, one of the survivors. Five/five stars.

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