@ddiamond Dan Diamond on local coverage of health care reform https://t.co/OuRcZp9E3L
— Greg Dworkin (@DemFromCT) July 2, 2017
Local media is covering the impact of the Senate Bill. Here in North Carolina is an extraordinarily detailed and humane look at the care that medically frail kids needs. It is a lot.
Among those who could be deprived of medical services are nearly 2,400 “medically fragile” children in North Carolina whose ventilators, oxygen tanks, feeding tubes, catheters and round-the-clock nurses are covered by a little-known Medicaid program available to middle-class families with private health insurance.
The program pays for services that private insurance doesn’t cover, allowing parents to work and the children to attend school….
Caring for one seriously ill child in the program costs an average of $80,000 a year in North Carolina, compared with $4,700 for a typical Medicaid beneficiary in the state. That could make the program an easy target for cost reductions, parents fear, because the amount of money required to treat one “medically fragile” child can be used to provide health care for 17 kids on Medicaid.“Our kids aren’t cheap,” said Jenny Hobbs, a Pfafftown mom near Winston-Salem who works as an HR manager. Three of her four children are “medically fragile.”
Madison, 7, Meredith, 12, and Michael, 14, all have mitochondrial disease, a progressive disorder that can cause muscle weakness and pain, seizures, vision loss and hearing loss, learning disabilities and organ failure, among other complications. The condition has no cure. Last year, Madison was also diagnosed with melanoma. All three use feeding tubes for medications and supplemental feedings. Meredith and Michael need ventilators to help them breathe, while Madison requires an oxygen tank. All three have their own designated private duty nurse who accompanies them to school and cares for them overnight.
A block grant program creates a very strong incentive for states to minimize the amount of money that they spend on the highest cost cases. That means providing minimal or inadequate care to the kids who need the most help.
The local press is doing a good job of highlighting locally relevant stories.
Use these stories when you call your Senator this week.
Brachiator
Yep. And maybe also get the word out by enduring a few battles with FaceBook friends and relatives during your holiday barbecues. It’s pretty simple. The Republicans promised to repeal Obamacare and replace it with something better. But their plan takes away health insurance from millions, gives tax cuts to the wealthy, and chips away at Medicaid, while tossing a few meaningless tax credits at the Middle Class. How is this better?
dmsilev
Boston Globe had a front-page article today about rural hospitals (focusing on a couple in Maine) and how they’re going to get hammered if the GOP has their way in gutting Medicaid. Anyone trying to call Susan Collins’ offices could bring that up.
dmsilev
@Brachiator:
Freedom!
Ohio Mom
I must admit I am enjoying having a four day weekend off from calling Portman. Although it’s not a complete vacation since I am substituting pestering Ohio Dad to do some long-neglected house maintenance items today.
Of course, at the end of the day, I will be able to gaze upon my new small home improvements, while I become more and more unsure that my calls are actually affecting anything. No one will be surprised if Portman folds.
smintheus
I see that Trump is offering help to a terminally ill infant in Britain, while he is encouraging the Senate to pass a bill that would cut the healthcare for millions of US children.
Betty Cracker
Our local public radio station was covering the GOP healthcare bill earlier today. There was some in-depth info on how Trumpcare will affect low-income seniors, nursing home residents, etc. I was glad to hear it. The bill is incredibly unpopular. That doesn’t mean the GOP ghouls won’t find a way to pass it, but if so, it will hopefully seal their electoral doom.
smintheus
I checked to see if Pat Toomey is meeting with any voters during the recess. One “town hall” meeting, that’s it. And the meeting will be in a small Harrisburg TV studio, with maybe half a dozen people, by invitation only.
He’s feeling the heat, but Toomey is determined to deliver the tax cuts for his Club for Growth backers.
This editorial from the Inky is a delicious smack down.
West of the Rockies (been a while)
3 out of 4 kids in that family have mitochondrial disease. Is there a way to test for that en utero? I think — given the choice — I’d not have children who I thought would be stricken with a non-curable disease. YMMV.
d58826
I know the devil is always in the details but it seems to me if you are a congress critter there is one simple yes or no to ask about any of these bills:
will it provide affordable quality coverage for the 28 million or so American that have been missed by Obamacare (for whatever reason) w/o impacting those already covered?
If the answer is yes then lets talk details
If the answer is no then don’t let the door hit you on the way out.
Villago Delenda Est
@smintheus: The Club for Growth needs to be reminded that growth for growth’s sake is the ideology of the cancer cell.
BC in Illinois
@dmsilev:
That was – literally – the reaction of Congresswoman Ann Wagner (R – St Louis County), an absolutely dependable Republican vote, about the House version of the the Trumpcare Wealthcare bill:
smintheus
Policy question: Since everyone agrees that healthcare cost increases are out of control, what is the objection to reforming Obamacare by the government mandating that hospitals and health care providers can charge an insurer or private individual no more than the established Medicare rates?
I know that the Republican objection to the government capping drug prices is that Americans have to subsidize the low prices that drugs sell for in the rest of the world. But what could be the objection to the government capping fees for services?
d58826
@smintheus:
I’m not sure if this is really true but it certainly is a way to hoist the GOP on the ‘America first and the world be D***med’ petard.
West of the Rockies (been a while)
@smintheus:
Yes, the U.S. vastly outspends on healthcare and receives a lesser product than multiple countries. Where are our dollars going that their euros or quatloos aren’t?
Starfish
@West of the Rockies (been a while): Here is another story about a woman with brittle bone disease who cannot get married to the father of her child who also has brittle bone disease. She cannot hold her child for fear of getting injured.
smintheus
@d58826: I’m pretty sure that is the GOP argument, boiled down. Longer version: Developing new drugs is so expensive that if the US joins the rest of the world in forcing drug-makers to sell drugs at an affordable price, they’ll just shut down their research labs; the US is the only thing keeping Big Pharma afloat.
Frankensteinbeck
@dmsilev:
Spite is value added, and ‘freedom’ means ‘fuck you n*****-loving liberals.’
@smintheus:
You would need to make sure that the actual source of inflated costs was specifically targeted, I know that.
d58826
@smintheus:
Well that probably is true – in a super deluxe cabin on the QM2.
d58826
@West of the Rockies (been a while): Well one place is all of those TV ads touting the latest and greatest prescription drug that will cure ‘whatever’ except by the time they list all of thew possible side affects it may be the disease isn’t so bad.
schrodingers_cat
@smintheus: Most big pharmaceutical companies spend more on marketing than on research. You can look at the SEC filings of the companies, and check that for yourself.
narya
@schrodingers_cat: I worked for a biotech startup for awhile, and that was the huge issue we had. Our technology was best-suited for Phase I trials, but the only people who could fund our (relatively expensive) trials were the marketing folks–but our technology wasn’t sufficiently well-developed to aid at that stage of the game. It was particularly frustrating because Phase I trials using our technology would provide potential information to cut short (or not) the subsequent phases.
Yutsano
@schrodingers_cat: A lot of pharmaceutical companies rely on government funded research for their latest meds. They only tend to absorb the costs of trials once they have the patent.
smintheus
OT, Maryland announced it won’t give voter info to Kobach.
TriassicSands
@d58826:
That would be true if these were mentally healthy human beings with an intact conscience and a shred of empathy. But they’re Republicans.
I still remember an interview I saw with McConnell in which he made it clear that he might be willing to discuss ways to improve the coverage of people who already had health insurance, but he had no interest at all in extending coverage to those without it. A real prince of a man.
I hesitate to say that these aren’t “normal” people because more than 60 million people voted for Trump and the same people elected McConnell, Ryan, and the other vermin who pass for human beings on the MSM.
d58826
@TriassicSands: AH yes I should have added the qualifier
d58826
@Yutsano:
And when the patent is due to expire they tweak the formulation so they can get it extended.
d58826
OT but Der Fuhrer continues to win friends around the world. from huffington
I’ve seen the photo that they have at the top of the front page before but the look Merkel is giving Der Fuhrer. Would melt diamonds.
http://www.huffingtonpost.com/
ArchTeryx
@d58826: Yeah, and completely deserved. You behave in a dignified way in front of a head of state, not like a whiny toddler. But Trumo doesn’t know any other way but temper tantrums.
TriassicSands
@d58826:
Eventually, they’ll figure out a way to change the color of the label and get a patent extension. It’s a really corrupt system.
gammyjill
@West of the Rockies (been a while): I’ll go one step futher, WotR, and ask why the mother keeps having “medical fragile” children, particularly after having the first two. I truly don’t mind my tax dollars helping her, but just think that if it was me, I wouldn’t want to inflict pain and suffering onto a child by having more with the same defect.
Another Scott
@d58826:
FIFY.
HTH.
Cheers,
Scott.
(Who wonders if it will get through the spam filters…)
Sister Rail Gun of Warm Humanitarianism
@gammyjill: Mitochondrial disease isn’t necessarily inherited. There are some environmental toxins that can cause it.
It can also take a while to express, and even longer to be diagnosed. No time to read the article right now to see if it’s addressed, but it’s possible that the youngest was born before the oldest was diagnosed.
Mnemosyne
@gammyjill:
Sad to say, but I wouldn’t be surprised if some preacher told her that if she prayed really really hard and had faith, God would cure her children and/or prevent newer ones from having the same problem. And when she had another with the same issue, that was just a sign of her lack of faith.
I can understand having two close together because issues like that don’t always manifest themselves early enough to not have a second child, but to have a third and a fourth?
Sab
@gammyjill: I knew a family who had three children, two of whom were medically fragile with an inherited condition. They weren’t diagnosed until after the youngest was born. The mother had no idea she was a carrier until after the diagnosis.
Bailey
@West of the Rockies (been a while):
Glad to know I’m not the only one thinking this.
Another Scott
@Sab: The implication is there’s a similar timeline with the Hobbs family. From the article:
The point from this story isn’t that the family somehow did something wrong, but that medical disasters like these can happen to anyone. And when it happens, they need to be cared for because we would want to be cared for in that situation, and because as the richest and most advanced country in the history of the world we have the ability (and obligation) to do so.
Cheers,
Scott.
Yutsano
@Bailey: To be fair, this is the other side of choice. There are those who even with the possibility of this diagnosis will for their own reasons decide to keep the baby. It’s defending those who know they don’t have either the means or support to keep the baby who really need safe abortion. But we shouldn’t judge too harshly when someone chooses another path.
@d58826: Patents are much more important than patients to them. Patents make them much more money.
d58826
@Another Scott: When I first keyed the comment I mis-spelled patent as patient. Freudian slip. I suspect either works as far a Big Pharma is concerned.
Mike J
If they’ve got all these midichlorians can’t they use the force to heal them?
scav
@d58826: Well, as for Big Pharma in that super deluxe cabin on the QM2, there may be a whiff of poetic justice: Air on board cruise ships ‘is twice as bad as at Piccadilly Circus’.
Another Scott
@Yutsano: Excellent point.
Also too, the only way to figure out how to treat and cure these diseases is to, you know, do the work to understand and treat and cure them.
Giving up by saying, “OMG it’s too expensive, the family messed up, sorry but to the ice flow with you,” isn’t the way forward. (I realize that nobody on this thread is saying that. The point is – we need to do the work and spend the money to help people with these horrible diseases, because it will help all of us.)
Cheers,
Scott.
Bailey
@Yutsano:
Oh, I get that. I am not for limiting these people’s choice–or even suggesting they shouldn’t get public assistance–but that doesn’t mean I don’t question their choices, if not for their sake than for their childrens’. The age spread of the kids suggest that they surely would have known the oldest two were diagnosed before the youngest was born. At a certain point, you have to ask yourself whether bringing another child into the world who statistically may undoubtedly suffer and never full live independently is a good or even fair idea.
Sister Rail Gun of Warm Humanitarianism
From another article featuring the Hobbs family:
StringOnAStick
I have known people who knew they had a genetic disease but were still determined to have a baby because hormones, Jesus, or whatever else was the source of their emotional need to reproduce. Most of them eventually adopted thankfully. People will decide to do things that from the outside look at least ill-advised, and from the inside they are sure they have iron clad logic on their side. That’s on them and I’m not going to limit their choices, but we are the wealthiest country in the world and it is damned well time that we act like it and take care of all our citizens, not just the rich bastards that consolidated their control of the political process when Citizens United squirmed out of the USSC. I’m heading deeper and deeper into Eat the Rich territory these days, though I suspect they will taste terrible.
catclub
@Another Scott
well of course not. They are saying “to the ice floe.”
catclub
@Sister Rail Gun of Warm Humanitarianism:
So about 99% certainly a Trump voter. Also a Republican.
Hoocoodanode Electing Trump and the GOP would means cuts to healthcare.
Ohio Mom
@Bailey: I know a number of autism families who really wrestled with the idea of having another child since the chances of the second kid also having autism are higher than the original risk for the first child — though in the grand scheme of things, it is still a low risk.
Some had a typical second child, some got to shrug their shoulders and say, “Well at least we already know what to do,” and some had a kid with a different but probably related set of issues.
And then there is one family I know who have five kids, three on the spectrum, and obviously never gave a moment’s thought to the pros and cons of what might happen. I admit, that makes me roll my eyes.
I was a pretty older mom so one kid was going to be my limit anyway.
One thing this disability experience has taught me is that there are relatively few conditions that can be confirmed any time during the pregnancy.
d58826
I have a cousin with three kids. The first was born with CF, a total surprise since no one knew the gene was in the family. They had two more kids, one more with and one without. Fortunately they live in a big city with world class childrens hospitals. The boys have been in and out of the hospital all of their lives, They are in their early 20’s now. I have no idea what their medical bills are like. Nor do I have any idea about their opinion on Obamacare. They are pro-life fundies so I can guess., I have a hard time believing thay paid out of pocket for all of that care. So if they did receive help it was because of God working a miracle. If it is Obamacare for someone else then it is socialism and the work of the devil.
Another Scott
@catclub: D’oh!
rofl.
Cheers,
Scott.
? Martin
@West of the Rockies (been a while):
It can be tested for. However, what then? Being stricken with a non-curable disease is one thing. Being stricken with a non-curable disease and you can’t get insurance to cover treatment is an entirely different thing. A lot of parents would go through with the pregnancy in the first case, and a lot fewer in the second case. The GOP health plan is going to be open season on seeking abortions, which if I’m not mistaken they are generally opposed to.
? Martin
Oh, and since we haven’t had an open thread in a while: Fuck Seb Vettel getting away with road rage and picking up points with only having to issue an apology. That’s all. Just needed to get that out.
gene108
@Betty Cracker:
People don’t vote Republican because it’s a good deal for them economically. They vote Republican, because they promise to keep the blacks, browns, Muslims, Mexicans, gays, etc. down.
As long as people are happy to vote against their economic self-interest, for what they perceive as preserving their social status, I’m pretty sure there isn’t much Republicans can do that will make their voters turn against them in the long run.
Part of me doubts people will remember this come 2018.
They sure as hell did not remember the 2013 government shut down.
Yutsano
@gene108:
Remember what happened right after? The healthcare.gov rollout was a disaster and it gave the Republicans their footing right back. They beat that drum through the midterms even before the first Shared Responsibility Payment hit.
katep
@West of the Rockies (been a while): There is a 100 percent chance of the trait occurring in other siblings, since all mitochondria are inherited from the mother, although symptoms might be either more or less severe. I don’t know when they discovered this fact but i am pretty sure I would have stopped having kids. Tragic situation made worse by threat to Medicaid.
catclub
@katep:
yes, of course. Except, why doesn’t the mother have it?
guachi
If she didn’t vote for Clinton, my sympathy for her family is exactly zero. And I’m pretty sure she didn’t.
Another Scott
@? Martin: They’re opposed to everything that helps people not in the 0.01%.
If tests can indicate a high risk of an expensive disease that might lead to the choice of having an abortion, they’ll outlaw the test or refuse to pay for it. We know that.
They find ways not to pay for tests to prove innocence (or guilt), after all.
We have to vote them out of office to end these barbaric practices. Every election matters.
Cheers,
Scott.
Sister Rail Gun of Warm Humanitarianism
@katep: There are four children. The younger three are affected.
The diagnosis is a fairly new thing, and they’re still discovering new variants. It’s entirely possible that the youngest was at least in utero by the time they got the diagnosis for one of the middle kids.
? Martin
Reminder that California will always lead on women’s health, regardless of which assholes are running the federal government.
Oh yeah, always a good reminder:
Reagan legalized abortion and signed the state’s first gun control laws. We need more hippy governors like that around the US now.
? Martin
@catclub: She does have it. The thing with mitochondrial inheritance is that you can inherit it with no symptoms, with severe symptoms, and everything in-between. Further, every child could have different symptoms as well as different symptoms from the mother.
jl
Call or write whether in Dem or GOP district or state.
Call or write local news outlets. If there was a local townhall or demonstration, or GOP Congresscrook refused to hold a townhall, ask why was that not covered, or not covered more.
If you see bad local or national coverage on health care, note down some criticism, look up some facts that they should have covered, and contact them with a complaint and a suggestion,
Don’t let trolls and people who love to preen with their cynicism deter you. OF COURSE, you can’t trust your GOP ‘moderate.’ But that is not the idea. I heard on the news that there are 6 GOPers who are balking at the Senate bill. McConnell can afford two.
The point is not to convince your GOPer to do the right or responsible thing. The chances of that are small. The idea is to make them afraid to commit, to panic them into digging in deeper with demands. The point is to play the moderate GOPers’ spinelessness, timidity, cowardice and lack of principles to our advantage. McConnell needs to have too many GOPer goofballs up in the air to juggle when he comes back to work a deal. He needs to come back from recess with more than 6 GOPers up in the air, and not enough time to wheel and deal.
This is not a pleasant and not the ideal way to deal with policy in a representative democracy, but they chose this path, not us. So, their responsibility and their problem, not ours.
Edit: by ‘this path’ I mean the GOP’s complete cynicism in their actions, and their hypocrisy. After working the corporate media refs to obstruct and then whine about lack of leadership and biparisanship, they took the most cynical path imaginable. Refused to work with any bipartisan effort, and shut out everyone except 10 or 13 white maile reactionary GOP geezers to craft a dishonest bill that they are selling with lies.
James Powell
@gene108:
They sure as hell did not remember the 2013 government shut down.
There were many who remembered it, but they blamed Obama for failure to lead, refusal to compromise with Republicans, failure to recognize that the greatest crisis in American history was the deficit or the debt or anything that [insert racist epithet] was trying to do. I mean, the fate of the nation was at stake, the Republicans had no choice but to shut down the government.
I heard all of this from the assholes I went to high school with – fka facebook friends.
SenyorDave
Someone should take Richard Burr, put him in a Hannibal Lechter-type contraption, and transport him throughout NC to visit families that will be affected by this. Let that piece of garbage explain why a billionaire needs a tax break so much that the children of these families will be deprived of needed services. I’m disappointed that liberal groups have not run TV ads attacking the AHCA.
Sister Rail Gun of Warm Humanitarianism
@? Martin: And since they already had a child who had no symptoms, it likely took even longer for their doctor to consider it as a possibility.
Hal
Twitter thread that reads like a horror novel:
https://twitter.com/ASlavitt/status/881957524630642689
jl
Krugman has a good run down of the current featured GOP/Trumspter lie regarding Senate and House bills: that most of the increase in uninsured is due to drop of mandate. It’s all just freedom of choice, you see! You don’t like freedom? They are lying about the CBO analysis to peddle this BS.
If you have a GOPer rep or senator, might be a good idea to challenge them on this lie when you contact. if you have a Dem, then challenge them to make more of a public fuss about the lying.
Krugman’s short tweet storm about it starts here:
Paul Krugman
@paulkrugman
Really no surprise that Rs are trying to work refs — trick or bully the CBO into giving the numbers they want 1/
https://twitter.com/paulkrugman/status/881912065610457093
jl
Jam the phones and email of the Senate so we can jam McConnell when his whole sick crew when they get back.
Too keep your motivation up, remind yourself of the fun of watching McConnell trying to manage a herd of terrified feral rabid cats and deranged weasels when he gets back and having to admit to the whole country that his dishonest and irresponsible schemes have blown up in his face.
Imagine a mob of terrified ‘moderate’ GOPers pissing their pants and running in every direction in electoral and donor panic, and even Yertle can’t corral them into some BS deal.
Edit: obligatory apology to rabid feral cats and deranged weasels, before some BJ commenter scolds me. It’s a metaphor.
Patricia Kayden
@Brachiator: It’s only better for the wealthy because of the huge tax cuts they’ll get if Trump Care passes. As if the Kochs have any true need for more tax cuts.
Patricia Kayden
@Hal: So by the time Trump Care is signed by the Bigot-in-Chief, it will take us back beyond the pre-ACA days. Getting rid of entitlement programs has been Paul Ryan’s wet dream since his college days so this isn’t too shocking.
This is what happens when you give full control of Washington DC to Rightwing Zealots.
Frankensteinbeck
@jl:
They are scared, too. The public pushback GOP congressmen are getting has them viscerally, personally, pee-their-pants afraid. I’m not sure what effect that has on their voting, but it’s clear the angry town halls in particular terrify them.
jl
@Frankensteinbeck:
A William Blake quote comes to mind. Paraphrase:
Truth told with a bad intent beats the most entrapping lies.
We are in the position of telling the GOP the truth with the bad intent of sowing chaos within their ranks.
Their leadership chose to go this direction, so not our problem.
If you can’t call with earnest intent, call a GOPer with a feeling of malicious glee in making them pay for their spinelessness, lack of principles, cowardice, and complete fecklessness.
Mnemosyne
@Sister Rail Gun of Warm Humanitarianism:
Yup, that’s what I suspected. I actually don’t have a problem with people deciding that they should have children even when they know there’s a good chance those children will be born with a disability. I do have a problem when they think that everyone in the country should be forced to make the exact same choice, and that Those People aren’t entitled to the same support they got.
They want to receive benefits for themselves and deny the same benefits to others. That’s why they suck.
burnspbesq
@smintheus:
Shouldn’t the self-proclaimed Great Negotiator be “encouraging” India et al to bear a bigger share of the cost? A free-rider strategy only works if there is a chump out there willing to cover the free-riders’ share of the cost.
We’re paying that asshole to do a job. Would be nice if he would at least make a half-hearted attempt.