state health insurance exchanges

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!

Get to Know Your Ex

The word “exchange” is a funny one. It’s Latin root “ex” means  “out of, away from” like “exodus” or “exorcism.” It also means “without, not including” like ex-dividends. Or “former” as in “ex-husband.”
In health insurance, it means “confusing, convoluted, complicated comparison.”
Of course, I am only half-kidding.
But all the more reason why parents of kids with hemophilia and patients 18 and older need to start reading about and preparing to engage in the coming state insurance exchanges. These are part of the Affordable Care Act, passed by Congress and being enacted in phases with most of the changes beginning in 2014. These include the exchanges, a virtual “marketplace” (basically a web site) where people can shop and compare to buy the healthcare insurance that best suits their needs and budget. Michelle calls them the “Travelocity” of health insurance. 
But with presidential elections looming, and some states suing the government to repeal the ACA, it’s still a Wild West health insurance show out there.
On Saturday, I attended a great presentation by Michelle Rice, director of public policy at NHF about state exchanges. NHF has been holding webinars to train the community’s top advocates. Michelle reported over 85 people attended the first webinar! 
Here are some snippets of what I learned Saturday from Michelle:
1. State exchanges will be like “one stop shopping”—a gateway to
coverage for 30  million people who need insurance (and don’t forget the ACA will mandate most everyone have health insurance). 
2. The exchanges allow comparisons on four levels of benefits. They provide federal subsidies for premiums
and out-of-pocket (OOP) costs for people below 400% poverty.
3. There’s funding for states to
set up IT development, as the websites will need to be sophisticated to help the millions who will be tapping into them. 
4. There are minimum standards for all exchanges
to allow easy comparison:
5. 4
coverage tiers based on patient OOP costs; 
6. Essential health benefits (being
defined at the state level)
7. There will be “navigators” to help people use the exchange, 
multiple ways to enroll in person, online, phone), and one simple application
8. In 2014 all high risk pools will go away and these people will end up on exchange.
 9.   2 states, Louisiana and Arkansas,  won’t operate their own
10. 15 states already established the exchange (which doesn’t mean they can actually do it!)
11. 3 plan to establish (California, Colorado, Maryland)
12. 19 states are studying options 
13. 12 states have taken no significant action
Things are moving quickly, and if you have a chronic disorder like hemophilia, you must have insurance.
Want to learn more? Go the NHF’s website www.hemophilia.org and download slides from the last webinar. Get EXcited about learning more about insurance exchanges and EXcel! The more you learn, the better you will be able to handle the coming changes. 
Good Book I Just Read

Funny Blood: The remarkable
story of my daughter Ros
 by  Juliet Batten, 2011 

This is the very sweet and easy to read story of a young English woman who in 1974 adopts a beautiful baby girl, named Rosamund (“Ros”) who later is diagnosed with von Willebrand disease. The book, while no where near as in-depth and educational as Journey by the Massies, nonetheless paints a picture of the isolation in the 1970s and 80s of having a child with VWD, a disease not written about often or paid much attention to, given the medical demand that hemophilia/HIV provided. Juliet gives a heart-wrenching testimony of her daughter’s suffering and her stoic nature, as she braves so many hospital trips and procedures, and survives her first periods, which entail lengthy hospital stays. Both mother and daughter share strong character, uncomplaining nature and solution-seeking orientation. A wonderful mother and person, Juliet, and husband John, adopt Paul, a needy and active four-year-old, adding more stress and challenges into their lives, which they seem to overcome through the years with persistence and dedication.

The book is well written, interesting and inspirational. Ros succeeds beyond all odds and is now leading a successful life. My friend Richard Atwood, bleeding disorder book critic, writes, “The author did not expect to adopt a child with a major medical problem, but Juliet was capable and her Quaker beliefs provided a peaceful serenity. By necessity, Juliet learned about VWD, became a self-taught expert, and supported others; she also wrote articles for hemophilia and for adoption. Juliet, now retired, writes in her diary as Ros writes a blog; their inspiring story is insightful for living with a bleeding disorder.”
To this I would add that the book’s only flaws are the sometimes misinformation of the medical and scientific side of hemophilia, VWD, plasma and factor concentrates. For example, Juliet writes that 3% levels of factor VIII means severe hemophilia–not true. Also her descriptions of factor concentrates are a bit off-base. The book could have used more stringent medical editing. But if you look to the book for a heart-warming story of a remarkable mother and daughter, and to gain insight on what living with VWD is like in the 1970s and 80s, you will be very rewarded. I especially like how she gave such high marks and kudos to the Haemophilia Society and her HTCs. Juliet sounds like a classy lady! Three out of five stars.
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