Congress on the brink of repealing Obamacare

[IreneF]

Isn't COBRA the system when you continue your existing plan after leaving your job for a limited time?

Yes. For 18 months.

 

[IreneF]

The quote above was taken from post #48 by @IreneF although the actual quote was from someone else. I wanted to reply b/c I am confused where the $1900/mo figure came from? My family and I had an ACA plan since 2014 that covered three people and it was far less than than $1900/mo for all three of us. If I had taken the Cobra plan (from my former job), it would have exceeded $2K per month just for two of us (not three). Without the subsidy, and now paying full price, we still pay far less than $1900/mo.

As much as I've had complaints re: the plan, it has allowed me to do ten months of IVIG which has been the best treatment I have ever done. It covers almost all of my meds (including an EpiPen for $5 vs. $600 if I had no insurance). It covers medical procedures like an upcoming cat scan, it covers all of my blood work, some doctor's office visits (not all), and will hopefully cover another treatment that we are still pursuing. It also covers other conditions like thyroid/ Hashimoto's disease, or random things like seeing a dermatologist or ob-gyn, etc.

And as sick as I have been for four years, I shudder to think of families with children with cancer, and cases far more dire than myself, who will lose coverage. Families will go bankrupt and people will die without insurance coverage. They will flood emergency rooms because they will have no other option but this will not provide them on-going care. I cannot remember ever being so frightened by a piece of legislation and what it will mean for the American people. It is not about political party for me, it is about the system and the people that this will negatively impact.

I don't know why there is such disparity among plans, but we are paying (nearly) $1900/mo. We live in San Francisco. We are both around 60.

We pay Dr. Montoya out of pocket.

 

[Gingergrrl]

I didn't realize the insurance industry was being killed off, but if that's true, I'm ecstatic. They are a cancer.

I have not heard this and to the best of my knowledge, the insurance industry is still alive and well (and making major profits every day). Where did you (or anyone?) hear that the insurance industry was being killed off?

 

[AlwaysTired]

I have not heard this and to the best of my knowledge, the insurance industry is still alive and well (and making major profits every day). Where did you (or anyone?) hear that the insurance industry was being killed off?

@Kenny Banya said that in the comment right above the one you're referencing. I wasn't necessarily agreeing, as his comment was the first I've heard along those lines.

 

[Gingergrrl]

@Kenny Banya said that in the comment right above the one you're referencing. I wasn't necessarily agreeing, as his comment was the first I've heard along those lines.

Apologies, I meant to quote Kenny (not you!) and was curious @Kenny Banya where you heard that re: the insurance industry in the U.S. dying off? I would love this to be true!

 

[JayS]

Single-payer health care is great on paper, and probably great for a majority of people. Great for governments, maybe, in terms of providing good care for a majority of citizens while reining in costs. Sounds great. There may be reasons why it wouldn't work so well in differing societies given different forms of government, but it's an intriguing debate.

But when I hear ME patients talking about how great it is, I wonder if they've thought it through. The first thing that comes to my mind is that pretty much every government has tried to promote CBT & GET, somewhere between suggestion and imposition; while at the same time refusing to commit any funding towards actual research. The second thing that comes to mind is the struggle I observe as to how ME patients are treated in societies that have single-payer health care, or something close to it. Especially the UK & Western Europe. Unless I'm horribly wrong about what single-payer is, it means that the government picks up the tab. It also means that the government decides what's best--or what's appropriate.

I've seen Michael Moore put out work extolling the virtues of this system, and I've seen Sarah Palin try to knock it down. There seems to be truth in some of what both are saying, but each view was quite narrow-minded and tended to miss the overall point. We can't afford that. And the more time passes, even as we do tend to make more progress, the more I have to wonder how any ME patient could seriously support this. Because the reality of living with this disease should force people to reevaluate a lot of things, including their politics.

I don't know how many patients there are in the US with ME, but I never trust the official numbers. Everyone says 1 million; I don't trust that number. I think it's more like half that, but it's certainly growing, so let's say 1 million for the sake of argument. Right now the government doesn't spend much on ME/CFS. Whatever they spend for the CDC's CFS program, and the funding at the NIH research program. What does that come to? Until this year, less than $15 million a year, most likely. Plus whatever costs are incurred by the 1 million currently stricken, whatever meager government benefits we have qualified for, and that's certainly not all of us, just to get by. Like Medicare or Social Security Disability. Medicare isn't paying for anything experimental, I wouldn't think--no Ampligen or Rituximab. No moves by the government to take the disease seriously, no approvals from the FDA for Ampligen or anything else, so no private insurance companies have to pay for what they see as foolishness and waste. They're saving a LOT of money on us.

What would any government see in the way of benefit by legitimizing this disease. What's in it for them?

Why have they resisted as hard and for as long as they have?

Money, period. Now, as bad as it is in the US, those of us who are able, which isn't a lot of us, can try to get to one of the very few experts out there, who are remote and expensive to many. If we do have money, we at least can avail ourselves of things you just can't get in other countries. That really sucks, but think about that--if you have ME in most of Western Europe, you don't even have access to what you can do in the US. I'm sure there are exceptions, but for the most part it's just not possible, and that's largely because the amount of money that people like Wessely & Fink have saved governments has been the reason they have been given power, which has translated into healthcare policy. And it sure looks like 'single-payer' to me. And using their rationale, looking at it from their point of view, CBT & GET are 'the only evidence-based treatments,' and therefore those are the only treatments the government has made available.

Say what you want about the US, but that looks scary to me. Yes, scarier than the way it is in the US. Anything I've tried over the years that's been even remotely helpful is simply forbidden to ME patients in this part of the world. You know that thread Dolphin has from way back when where Peter White insisted that all of the items that might be helpful should be denied us because it might impede our recovery? That's what I'm afraid of when I think about single-payer healthcare. And that's not coming from any sort of ideological place where that places me somewhere in particular on the political spectrum. I know some people might see it that way, but it's not true.

If I were still healthy I might think universal health care is a great idea. I once did. I never considered people like us, but then I never would have thought that people like Per Fink were throwing people like Karina Hansen in psychiatric hospitals, either. He did this because he could, because the government has given him that power. If I've got this all wrong and that's not a component of the single-payer health care some people seem to think is s great idea, please explain it to me.

I would like to think that in most cases I'm in favor of whatever is going to benefit society as a whole, but in some cases that means that a minority will suffer. We don't always consider that. In this case it seems to me that our lives are at stake, and maybe single-payer would be great if there were proper ME research, and treatments. I may be wrong about this, but I'm just not convinced that any government is going to decide that allotting the money to properly research this disease and come up with treatments for 1 million people is going to be seen as a worthwhile expenditure when the foremost experts in the world--that would be Wessely, not Ron Davis, sorry--characterize it as a condition best treated with CBT & GET. Remember, Wessely's probably the most-published researcher on CFS, while Ron Davis is the guy who couldn't even get an NIH grant because not enough people there believe it's worth funding. And while I'd say Wessely is most likely a strong proponent of single-payer healthcare, or at least whatever flavor of that the NHS happens to be, I'm not sure the same is true for the NIH officials who hate us so. Who knows what they think; it's likely nonpartisan. They just don't like us & never did.

So, yes, we're making progress, and that's great, but we're also not beholden to CMRC, or NICE, or the GMC. I have heard stories about how doctors in the Midwest are afraid to deviate from unofficial attitudes that emanate from Mayo Clinic, but that doesn't stop the OMF from growing, doesn't stop Columbia. Fluge & Mella have opened new doors, but then they stumbled upon a finding that was absolutely shocking--but even so, they faced resistance from people who did their best to see the Norwegian government deny them funding. In Norway even 'skeptics' prefer the Lightning Process.

I don't know what the answer is. I do think that single-payer health care is a system that relies upon the government finding the most affordable ways to bring healthcare to as many citizens as possible. That leaves us out in the cold with nothing but CBT & GET, as it can be argued to any government body that these are the only things that it makes any sense to spend money on. That argument will lead governments to find any reason to stick with those, and they'll be able to justify it so long as PACE stands, I would think. So maybe someone else here has a better answer. In the meantime, I'd ask people to think about it, if they really think this is the best option for us. I know it's probably the best option for a lot of people, most people, but we're not 'most people.' We're in a very special, very small, and very, very potentially expensive category that nobody wants to deal with. In my view that makes us worse losers in a single-payer scenario than just about anybody. And I'm glad to have the few options I have in the US than I'd have if I were in the Netherlands or Belgium or the UK, or Germany, or France, or Spain...

 

[Gingergrrl]

Very interesting and well-written post @JayS above! I am actually one of the few Americans who do not want single payer and do not want the US government making health care decisions for me. My problem with the current proposed plan is that it will literally cut health insurance from about 25+ million people over the next few years (who currently have an ACA plan) and these people will have nothing. Not an ACA plan, not single payer, just literally nothing. Many of them will be working at 2-3 part-time jobs to support their families but these are jobs which do not provide insurance. It will affect people with all kinds of diseases (both super common to the very obscure) including children. I do not know what the answer is but I know it is not the current proposal.

 

[JayS]

Yeah, I honestly don't have an answer on that one--it wasn't what I was addressing. I understand where you're coming from & I can't say I have any quarrel with what you're saying. On the other hand, there are some pretty persuasive arguments that the ACA didn't exactly work out as planned & has hit a lot of people hard & badly & is unsustainable. The merits of the goals and the successes vs the criticism & the poor results is wide-ranging. Were we better off before? I never saw any people who were for the ACA say a word about people like us, and I never saw any opponents say they had anything better in order to try to reduce healthcare spending as percentage of GDP, either. The argument that insurance should be sold across state lines in order to create competition is something I'm not sure I've heard a good rebuttal from from the pro-ACA side. And then one argument that ACA opponents haven't addressed is that if we go back to larger numbers of the uninsured, if people return to the habit of using hospital emergency rooms as first-line healthcare, then the rates go up across the board, for everybody. This is why I try to avoid politics, because rarely does either 'side' have a command of the issues, cause-and-effect, and effective policy ideas that work across disparate demographics. I would have liked to have seen the ACA succeed, but I don't think we can say it has; on the other hand, there's a good chance the pending bill makes the whole thing worse.

But my focus was on addressing people who say single-payer is the best option. Outside of how unrealistic that is in the US in any climate, let alone the current one (remember 1993? I do, and that's when the opposition to Hillary Clinton's plan came up with what later became Romney's system in MA, which was in turn the basis for the ACA, which is what's so ridiculous about this whole thing), in my view that would be the worst possible outcome for us. And I wouldn't have realized it before I got sick, but the damage it would do to a large number of us, perhaps 1 million, is enough for me to say it's an extremely poor idea.

 

[Gingergrrl]

My biggest fear is if they go back to a system in which people with pre-existing conditions cannot get insurance unless it is from their job (which eliminates everyone who is too ill to work as well as those who have their own company, or work as independent contractors, etc).

I hope that even if the subsidies were eliminated (and I hope they are not!) that people with pre-existing conditions will still have the option to purchase a healthcare policy for themselves and/or their families. I know that the ACA has many flaws but what is being proposed now scares the living s@&%t out of me. I'm on my way to have a lung cat scan now which is possible b/c of my ACA insurance.

 

[Kenny Banya]

This site suggest Trumpcare is going to be disastrous for ME/CFS:

https://www.healthrising.org/blog/2...ses-dangers-chronically-ill-mecfs-particular/

 

[IThinkImTurningJapanese]

But my focus was on addressing people who say single-payer is the best option.

Have you ever experienced Universal Health Care?

Experience, not the ideas you have of it, but actual experience.

I find it odd that you advocate the Insurance industry increasing the costs of healthcare. And for what?

Them being the ones to mete out service, rather than the government?

 

[JayS]

No, I haven't. And given everything I've been reading on this forum for more than seven years, given the large numbers of people on this forum sharing their experiences living with "Universal Health Care" as ME patients in the UK & Western Europe, I'm quite grateful, thank you. You may be confused. What I wrote has nothing to do with anything but living with ME. Not dealing with cancer, not dealing with a broken leg, not dealing with the sniffles. ME. That's supposed to be the one thing that we all share here, the reason why we're on these forums.

My observation is that living with ME in a "Universal Health Care" system is by far the worse scenario, unless everything everybody's been saying about how there's absolutely nothing medical science can do beyond CBT & GET, and how governments allow people like Per Fink the power to imprison people like Karina Hansen, has been a long series of untruths. I kind of doubt it. In the USA I've had tests ME patients can't generally get in the UK; so did a fellow named Brian who spent a ton of money to travel to Canada so he could be diagnosed by Byron Hyde. When he returned to the UK with tons of medical evidence, he was told since the UK didn't recognize anything that wasn't in the NICE guideline, none of it meant anything. Having had an abnormal result on a tilt table test (not available in UK) he was advised to drink plenty of water (as I was). He might've taken that advice a bit seriously, and was sectioned as a 'danger to himself' after a doctor worried he'd been given poor advice. I don't even know if he ever got out, but it's besides the point. Being sectioned, and the fear of it, was something that was described many times on this and other forums over the years. It's the centerpiece of the documentary Voices From The Shadows. The idea of people being forcibly institutionalized for having ME as happened to Sophia Mirza, leading to her death, is something that ME patients related to as something that could actually happen to them. Here in the US, we have our own chamber of horrors, but as bad as it is, that sort of thing is, generally speaking, not something we hear much about as far as any sort of likely outcome.

So as bad as our system might be, I can't ever think of it in terms of how I might view it were I healthy. And my views on this are not ideological, and this is not the place for a political discussion. That said, I'll stand by my observations, thank you very much.

 

[IThinkImTurningJapanese]

@JayS I understand your concerns, I just disagree with where the problem lies. A simple way to explain would be to mention that "correlation does not equal causation".

I have lived with ME/CFS in the U.S., the U.K., and now in Japan.

My observation is that living with ME in a "Universal Health Care" system is by far the worse scenario

My experience has been that this perception is incorrect.

 

[Kenny Banya]

I've seen Michael Moore put out work extolling the virtues of this system, and I've seen Sarah Palin try to knock it down. There seems to be truth in some of what both are saying, but each view was quite narrow-minded and tended to miss the overall point.

Did Sarah Palin release a documentary?
What is it called?

 

[Snow Leopard]

But when I hear ME patients talking about how great it is, I wonder if they've thought it through. The first thing that comes to my mind is that pretty much every government has tried to promote CBT & GET, somewhere between suggestion and imposition; while at the same time refusing to commit any funding towards actual research.

While the latter is more or less true, CBT/GET are not routinely pushed in Australia - there are no such clinics for CFS patients where I live.

The problem is simply the harm that is done while patients wait for efficacious treatments to be approved.

The "market" based system has much the same problems - insurance companies unwilling to pay for treatments and well, the private cost of such treatments is higher in the USA than it is in other western countries!

 

[Kenny Banya]

While the latter is more or less true, CBT/GET are not routinely pushed in Australia - there are no such clinics for CFS patients where I live.

The problem is simply the harm that is done while patients wait for efficacious treatments to be approved.

The "market" based system has much the same problems - insurance companies unwilling to pay for treatments and well, the private cost of such treatments is higher in the USA than it is in other western countries!

My experience is how clueless GPs generally are regarding ME.
Luckily we have CFS Discovery in Melbourne & they do ongoing research together with various universities into ME.

The sad thing is, worldwide, of those who are aware how many are so because of an afflicted family member - Don Lewis at CFS Discovery started the clinic because his wife contracted it in the 1980s. Ron Davis (who Don Lewis is collaborating with) has an afflicted son. Warren Tate because of an afflicted son. Etc, etc, etc

 

[Nielk]

HHS secretary Tom Price tweeted today:

New HHS analysis of Obama Admin data shows premiums spiked 105% since 2013: https://aspe.hhs.gov/pdf-report/individual-market-premium-changes-2013-2017
#HHSReport

 

[Kenny Banya]

Some 23 million people would lose health insurance over the next decade under the revised Republican healthcare plan, says a non-partisan agency.

Fourteen million people would be uninsured in 2018 alone, according to the Congressional Budget Office.

The analysis said federal deficits would fall by $119bn (£91bn) from 2017-2026 under the proposal, which is championed by President Donald Trump.

House Republicans were criticised for passing the bill before the assessment.

Wednesday's rating lays down the gauntlet to Republican senators who are now crafting their own version of the bill, which Democrats have labelled "Trumpcare".
http://www.bbc.com/news/world-us-canada-40032893

The 'care' in Trumpcare.
Most of us have gotten used to the daily irony......

 

[Nielk]

Secretary Price tweeted this today:

"We want to hear from YOU as we work to reduce the burdens under #Obamacare and improve our #healthcare system. go.cms.gov/2sKKVWG"

http://go.cms.gov/2sKKVWGAn opportunity to be heard here -

 

[Kenny Banya]

Secretary Price yeeeted this today:

"We want to hear from YOU as we work to reduce the burdens under #Obamacare and improve our #healthcare system. go.cms.gov/2sKKVWG"

http://go.cms.gov/2sKKVWGAn opportunity to be heard here -

By ditching 23 million, that reduces the burden!!