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

Hospital Advocacy 101–A Refresher Couse

Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. —Helen Keller

Helen Keller’s quotation could be a the tagline for Advocacy 101, a class I feel I attended this weekend. I received a text Friday morning from my brother Tim, telling me our 82-year-old mother had been admitted to the hospital in the early morning hours. Apparently she had fallen in the night and couldn’t get up–yes, just like the commercial says. 
When I finally arrived in Springfield, I went straight to the hospital observation ward. My mother was very ill, that was clear. The doctors were running tests on her to rule out arterial blockage, stroke or neurological issues. Her main symptom was extreme vertigo, as she had no balance at all, which left her exhausted and nauseated, and shaking. She had not been able to eat all day. Fortunately, when I left her three hours later for the evening, she was perking up and looking and feeling better. The doctors were very helpful, and explained everything they could, in the best way they could. The nursing staff was excellent and we felt she was getting top-notch care. 
As I left, I realized I had not been in a hospital, in a medical situation, in a very long time, probably more than four years ago, when my son was last admitted with me around (appendicitis). My advocacy skills were a bit rusty.
Well, the great care she received Friday was from the day staff. The next day I returned with my sister-in-law Lee, and my mother looked like she was suffering, having had an ordeal through the night, including a 3 am MRI. She was curled up on one side, unable to lift her head, nauseated to the extreme. She had not had anything to eat or drink in forever. She said the noise from the admin desk (just a few feet away) from the “girls” at the desk was loud, obnoxious, keeping her tense and unable to rest. She rang and rang the call button, but no one came to assist her. She listed all her frustrations.
Lee poked her head out of the curtain that barely screened her from the rest of the ward and ordered, “She needs a room, now. She is very uncomfortable.” And this lead to, when are we getting the room? Do you know, within 15 minutes they had a room for her. They gave her a pill for nausea, changed her, wheeled her upstairs and brought her delicious broth to drink. My mom felt better within 30 minutes. She sat up and ate the soup. 
Lee also discovered that the nurse did not have it noted on her charts that my mother is diabetic: staff should really not be giving her muffins with high glucose content! Noted. And her diet was changed.
I was proud of my sister-in-law for being there, and for so immediately requesting an improvement. That’s true advocacy in action. It was a reminder of everything I learned 27 years ago when my son with hemophilia was born: how to politely make my medical rights known, to make my needs known, to speak up for a baby who cannot speak for himself. And not to back down when you know you are right. These skills weakened over time when not used; I was slower to advocate for my mother than my sister-in-law was!
I just learned that she has been discharged; so we will arrange to have her brought home, just in time for Christmas. And from where did I first learn medical advocacy? It wasn’t really hemophilia; it was from mom of course. As one of seven children, I watched her handle hospitals and doctors many times with my active brothers. And I saw her get action when she spoke up. The nurse mentioned to me that my mother is refusing a script for a walker, which we all wanted her to have. That’s advocacy and pride. That’s my mom, my first advocacy teacher.
Interesting Book I Just Read
Metallica This Monster Lives: The Inside Story of Some Kind of Monster [Kindle]
Joe Berlinger and Greg Milner

A story about the making of a documentary of one of the most successful metal bands, which was going through a crisis that threatened to destroy itself. In 2001 Metallica was reeling from losing its bass player, yet had to produce a new album, its first in years. The film team that produced two excellent documentaries, Brother’s Keeper and Paradise Lost (and the widely panned Blair Witch Project 2), now documented the band composing, fighting and enduring therapy with a performance coach. 1600 hours of footage turned into a feature documentary, and entered the Sundance Festival. But the book–an oddity. More about the filmaker and his career. Berlinger is too close to his subjects to be objective, and at times, revels giddily in his chumminess with Lars, the drummer. But I enjoyed it, even if it is an unevenly told story; Berlinger comes across as a very nice person, sincerely trying to do his best as the game plan keeps changing radically. Lars does not come across well. Fans may cringe at hearing these thrash metal superstars bare their feelings towards each other. A great book for psychotherapists or filmakers in training. The Kindle version is riff with missing periods at the end of sentences. Two/five stars.

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