What the Obama/Biden Victory Means For the Chronic Fatigue Syndrome Community

November 9, 2012

by Cort Johnson

The results of the Presidential election leave the ME/CFS Community with a chance and some hope, but no guarantees of major change…

Research

With President Obama in office, the National Institutes of Health (NIH) will remain as budget challenged as ever, and the chances of getting significantly more funding remain low at best, but as the country digs its way out of the worst recession since the depression there is some cause for hope. When President Obama sent Nancy Ann De Parle – a high-level aide with experience in health care matters – to confer with Department of Health and Human Services (DHHS) leaders, he became the first President to advocate for – or even acknowledge – Chronic Fatigue Syndrome. Remarkably, De Parle stated that President Obama had never sent her to advocate on behalf of a single disease before.

The President’s promise (through De Parle) – to elevate ME/CFS’s priority at the NIH – was encouraging, but it will take work to ensure that an administration with many major issues on its plate is held to its promise. With the FDA Stakeholders Meeting, the CFS biobank, the ad hoc Working Group and a possible Definitions Workshop, there are signs of more upper-level interest in this disorder, but massive changes are needed too. President Obama’s embrace of the ME/CFS community’s situation doesn’t mean we’ll get them, but it does provides a starting place we can build on.

It might also be noted that, after successfully passing review, Dr. Reeves’ job at the CDC appeared secure when he was abruptly removed not long after the Obama administration began. Someone new on the scene, it appears, didn’t feel he was the man for the job.

The Romney/Ryan ticket would have come into office focused on deficit reduction – a worthy goal, but one with significant implications for federal spending. The Ryan budget’s proposed NIH cuts of 25% over two years, while probably not achievable, suggested that Ryan, who by all reports would have been given substantial influence in a Romney administration, holds little stock in federal medical research funding. The proposed cuts were so extreme as to give some members of his own party alarm.

Given its tenuous hold on funding, ME/CFS might have been one of the first programs not just to be cut, but to go. The federal advisory committee, CFSAC, would surely be gone as the DHHS struggled to purge every non-essential program.

While federal funding for ME/CFS is abysmal, the federal government still remains easily the biggest funder of ME/CFS research in the world. With the feds funding the Lights, Dr. Klimas, Dr. Broderick, Dr. Taylor and other researchers’ work, and with smaller research efforts like the CFIDS Association and Simmaron relying on turning pilot study data into NIH grants, adequate NIH funding levels are critical for significant progress to occur.

Health Care

The President’s re-election means that the Affordable Health Care Act will be implemented by a friendly administration. President Romney may not have been able to repeal the bill, but a Romney administration would surely have done its best to blunt it administratively, perhaps hamstringing it enough to force its eventual repeal.

The Affordable Health Care Act provides significant health care benefits to people with chronic illnesses, including barring insurance companies from refusing to cover or charging higher premiums to people with pre-existing illnesses. Once you get ill, you can’t be dropped from coverage. Lower income individuals will be able to apply for Medicaid and many middle income families should see a break in their premium payments. Lifetime limits will end. Insurers will have to provide rebates if they spend less than 80-85% of premium dollars on medical care. All of these should be helpful for an often financially struggling ME/CFS community. (Find a timeline here.)

Now the question arises: how will the law be implemented? Thus far only 15 states have begun to build the framework for the state online insurance marketplaces the law envisioned. (Click here to check out your state). The states have until Nov 16th to tell the federal government if they’re going to create their own exchange and, if they are, they must submit their plans by Jan 1, 2013. The federal government will establish exchanges where the states are unwilling or unable to do so. Thus far Alabama, Wyoming and Montana have passed laws blocking the Act, but the federal will override those laws.

The federal government will provide at least two nationwide health insurance plans that will compete directly with private insurers. One of the plans must be offered by a non-profit entity.

Given the high priority debt reduction, it’s possible that some benefits, such as the federal subsidies to help families up to 400% of the poverty level ($14,856 for an individual or $30,656 for a family of four), will get scaled back. Providing Medicaid to people with incomes up to 133% of the poverty level is another benefit that might get cut back, and the Supreme Court’s decision not to require states to participate in the Medicaid expansion means that some states may simply not honor that provision.

Assertion

Voters make choices based on many different factors, but it’s hard to argue that, at least with regards to Chronic Fatigue Syndrome, the ME/CFS community – with its need for more research funding and more affordable health care – is not better off with the Obama/Biden team at the helm.

 

Disclaimer: The views and opinions expressed in this article are those of the author, and do not necessarily represent the views of Phoenix Rising.

 

114 comments

{ 114 comments… read them below or add one }

Mark November 9, 2012 at 11:46 am

Please note, this thread is meant to discuss the topic of ‘What the Obama/Biden victory means for the ME/CFS community’. Please refrain from posting political material and/or opinions that are not related to the above topic.

You are free to constructively criticize the content being presented. All opinions related to the content are welcome. If you feel the Obama/Biden victory will have an entirely negative effect related to the ME/CFS community, please post why you think so. If you feel it will have a positive effect, please post why you think so. This will likely promote an interesting debate and provide more information to those who are unsure.

Simply ‘dumping’ on Obama/Biden, the Republican Party or any other political party in general, or making sweeping generalizations related to political affiliation, will add nothing to the debate. Posts of this nature will be considered off-topic and will be removed.

Thank you.

Sasha November 9, 2012 at 12:26 pm

Welcome back, Cort!

You're right that it's important to the whole world what the US govt spends on ME research because all the other budgets are tiny by comparison.

I think we need to challenge the poor level of funding given to ME, given that the disease severity profile is similar to that of MS but affects many more people. Even if budgets were to be cut, if we got our fair share, we'd have shedloads compared to what we're getting.

Dr Joan Grobstein, in her evidence for CFSAC, said:

"MS is estimated to affect approximately 400,000 Americans and receives $121 million per year from NIH for research. ME and CFS are estimated to affect at least 1,000,000 Americans. It therefore seems reasonable to allocate $302 million annually to ME and CFS research."

http://cfspatientadvocate.blogspot.co.uk/2012/10/cfsac-testimony-dr-joan-grobstein-on.html

I'd like to see a campaign for ME funding called 'Help us find our missing $302 million'. Imagine that in a newspaper ad, or on banners in front of the NIH building.

Sasha November 9, 2012 at 12:34 pm


Mark

Please note, this thread is meant to discuss the topic of ‘What the Obama/Biden victory means for the ME/CFS community’. Please refrain from posting political material and/or opinions that are not related to the above topic.

I realise I'm a Brit so don't have a US perspective on this but I'd love to see this thread discussing how we can make the most of Obama having been re-elected. Does this present us with new opportunities for research funding? What should we be doing to get it?

penny November 9, 2012 at 1:38 pm

To me (with only my ME sufferer hat on) the result of this election means that I may in the not so distant future have the option of not having to pour every ounce of my energy and functionality into working JUST so I can keep my insurance coverage. Maybe, someday, I can stop pushing, stop risking making myself more and more sick every day for fear of what will happen if I loose my insurance coverage and fall into one of our giant societal cracks. It means that if I am unable to continue to work, my husband and I may be able to purchase private insurance despite my 'pre-existing' condition.

This, for me, is HUGE.

Bob November 9, 2012 at 2:06 pm

Interesting article thanks, Cort.

Cort

…it's possible that some benefits, such as the federal subsidies to help families up to 400% of the poverty level ($14,856 for an individual or $30,656 for a family of four), will get scaled back.

Could anyone clarify the above quote, please?

Is it a reference to the income levels that qualify for subsidies, or the amount of subsidies available to each family? (I have no idea how much health care costs in the US.)

Mark November 9, 2012 at 2:07 pm


Sasha

I realise I'm a Brit so don't have a US perspective on this but I'd love to see this thread discussing how we can make the most of Obama having been re-elected. Does this present us with new opportunities for research funding? What should we be doing to get it?

That discussion would be very much on topic, Sasha, and an important and relevant subject to discuss. It's general party political discussion, that goes beyond the topic of policies that directly affect us as ME/CFS patients, that we want to avoid here.

Dreambirdie November 9, 2012 at 2:21 pm

I am so relieved and so very happy that Obama won. He is such a compassionate man, with such deep understanding of the suffering of others. That came through loud and clear in his willingness to hear out the plight of those who suffer with ME/CFS, and his promise to elevate ME/CFS’s priority at the NIH. No other president has even acknowledged those of us with this disease. Obama is the first and ONLY president to do so, and I am deeply grateful for that.

Sasha November 9, 2012 at 2:45 pm


Sallysblooms

Moderator Note – quote removed.

I can understand why, reading posts on PR from the UK all these years, people could get the impression that we in the UK get no help from healthcare. It's not the case, though. ME patients are in a freakish position here, just like we are in any country. When it comes to other health conditions, I'd say we get good, even great help from healthcare, and it's free at point of use. There are local variations, of course, and the quality of care varies according to the quality of the doctor you're dealing with, but I think that would be true of any system.

I wouldn't want to judge any healthcare system anywhere in the world by how they treat their ME patients. By that standard, they're all failures.

Sallysblooms November 9, 2012 at 2:47 pm


I wouldn't want to judge any healthcare system anywhere in the world by how they treat their ME patients. By that standard, they're all failures.

Not at all. Many of us are doing very well.

Dreambirdie November 9, 2012 at 2:55 pm

There's another very important point to be made about the Obama win, which is the undeniable fact that the Republicans would have made drastic cuts to social programs, like SSI and SSDI, which so many ill people depend on.

I know several people who are very ill with ME, and who have NO family support, NO rich spouses to fall back on, NO insurance. They rely on their disability money in order to get by. Without it, they would end up destitute and homeless. I am relieved that we have a president who will not put these programs on the chopping block.

Jenny November 9, 2012 at 2:56 pm


Sasha

I can understand why, reading posts on PR from the UK all these years, people could get the impression that we in the UK get no help from healthcare. It's not the case, though. ME patients are in a freakish position here, just like we are in any country. When it comes to other health conditions, I'd say we get good, even great help from healthcare, and it's free at point of use. There are local variations, of course, and the quality of care varies according to the quality of the doctor you're dealing with, but I think that would be true of any system.

I wouldn't want to judge any healthcare system anywhere in the world by how they treat their ME patients. By that standard, they're all failures.

Yes, my family have had fantastic care from the NHS. My husband had a liver transplant 4 years ago at Kings College Hospital and now he's on a trial of a Hep C drug. The doctors and nurses were amazingly skilled and supportive. My mother also had very good end of life care. All free of course.

Jenny

dannybex November 9, 2012 at 3:30 pm


Sallysblooms

I wouldn't want to judge any healthcare system anywhere in the world by how they treat their ME patients. By that standard, they're all failures.

Not at all. Many of us are doing very well.

Those who have either great insurance, and/or sufficient funds, yes.

Sushi November 9, 2012 at 3:41 pm


Sasha


I wouldn't want to judge any healthcare system anywhere in the world by how they treat their ME patients. By that standard, they're all failures.

Yes, I think we need to look at the level of healthcare available to ME patients in terms of what is available to all ME patients, regardless of whether you are able to seek out and pay for care from the few excellent doctors in this field. Seeking out good protocols has often been blocked by the inability to qualify for health insurance in the US.

Judging by the standard of what is available to all patients, it would seem that most healthcare systems in the world have failed us (maybe excepting Japan? Any members here from Japan?)

I think that the promise of insurance for all ME patients–regardless of the "pre-existing condition" clause–is a good step forward. And also, as Penny says….

It means that if I am unable to continue to work, my husband and I may be able to purchase private insurance despite my 'pre-existing' condition.

Not having to work when it is making you more ill–just to be able to get health insurance–will give many patients the chance to rest and look for some treatment strategies that were not available to them before. Let's just hope that there will be more research funded (as has been tentatively promised) to discover some new approaches, and that disability criteria will be reviewed to include more of us.:confused:

Sushi

wdb November 9, 2012 at 4:01 pm


dannybex

Those who have either great insurance, and/or sufficient funds, yes.

I don't know this is strictly true, sure money may reduce stress etc but reality is there are currently no treatments for ME/CFS with any substantial evidence base supporting them regardless of cost, and there are still plenty wealthy but ill ME sufferers.

dannybex November 9, 2012 at 4:26 pm


wdb

I don't know this is strictly true, sure money may reduce stress etc but reality is there are currently no treatments for ME/CFS with any substantial evidence base supporting them regardless of cost, and there are still plenty wealthy but ill ME sufferers.

I agree and disagree. Certainly there are a lot of wealthy people with ME/CFS that are just as sick and sometimes sicker than those with virtually no funds. I don't have the answers of course, but I have known and do know of a few who spent tens of thousands (if not more) seeing the 'famous' (or infamous) CFS "expert", and got a lot worse. That particular expert doesn't agree for example, that methylation problems have been found in practically every patient tested (according to Rich VanK and Dr. Neil Nathan). Not sure if checking genetics and addressing the defects would've made a difference for those patients, but just saying that some of the docs who charge so much can sometimes tend to have a 'god' complex, and not be open to others input.

Suffice to say that it's definitely a very complicated 'syndrome', and I think if one has more options, then not only is stress lowered, then the chance of improving is increased as well. I haven't been able to see a decent doctor in over a year.

And in no way do I mean anything against Sallysblossom in any way. It's great to know she's doing well, and what has helped her. Perhaps if the so-called 'experts' spoke with her doctors, they might just learn something.

??? :)

p.s. And believe me, money would definitely reduce stress big time.

Dreambirdie November 9, 2012 at 4:31 pm

wdb–Yes, money is not a guarantee of better health for those with ME/CFS. But when you do not have it, and have to struggle to make ends meet, and can't afford healthy food and necessary supplements, then you will definitely be worse off.

The stress of not having access to the help you need can be very detrimental to one's health.

Dainty November 9, 2012 at 4:32 pm

The problem is, there's no such thing as "free" healthcare. Someone, somewhere, has to pay the bills.

It appears to me that the affordable health care act will force health insurance companies to lose more money. Like any business, they have to make money in order to remain in existence. So if they're forced to lose money in this way, the result will be that they need to start charging more in order to stay ahead. They might raise the rates for everyone, or they might inflate the prices of prescription drugs and proceedures to even more ridiculous levels than they are today (there's no resource reason an MRI should cost more than $5, for example) or perhaps increasing the co-pay. Whatever the case, people end up paying more – either for the insurance to begin with, or if you don't have insurance you're paying more for procedures/drugs out of pocket because the insurance companies have jacked the price up so high.

I've read forums where massage therapists are telling each other how to get away with charging insurance companies a fortune. So insurance companies are forced to pay out easily 3 times the reasonable amount. They have to make up that difference somehow. They do it by charging more in other areas, just so they don't have to close shop.

It's a warped system, but forcing them to "help" us more will only warp the system further, from what I can see.

Regarding Medicaid. Do you know how much doctors get paid when you visit them with this "free" system? I found out that for an hour long appointment medicaid would only pay $50 to my doctor. Average cost of medical school is $140,000. No wonder so many doctors are refusing medicaid! They need to put food on the table, too. Medicaid recently asked me to find a new primary doctor on their system, and gave me a list to choose from. When my caregiver called several dozen on my behalf, every single one of them said they were not taking any new medicaid patients. I can't say I blame them. But I have to wonder….how does putting more people on medicaid help anything medically? I once shared an ER room with a woman experiencing very severe symptoms (was shockingly jaundiced, projectile vomitting, severe abdominal pain) and they sent her home with no help because nothing showed up on the CT scan. They of course stressed that she should follow up with her primary care doc, but as she told me she had not yet been able to find a doctor willing to take medicaid so the only help she could ever get was in the ER, where they only ran tests and bounced her out again.

That doesn't sound like the kind of care that would be helpful to someone with ME/CFS.

Issues in the medical system are complex, but I believe it's important when considering political changes to view all the ramifications on everyone and not just what would be easiest on us. Medicaid gave me the option of asking my doctor to get on their system. I couldn't do it. My doctor has bent over backwards to cut costs for his patients. He practices in a dinky run down shared office complex and works as his own secretary, and somehow manages to squeak by charging only $60 for subsequent visits. His reputation in the field is such that that every doctor of that specialty I've emailed accross the country recognizes him by name. He could easily charge three times that much as many doctors do, but instead he chooses to live by more humble means so that the average person can afford to see him.

If he can do that, I can choose to make sacrifices to be able to scrape together $60 to visit him once a month. And to top it all off, this is the doctor that's bringing about all this progress that I've been writing about. He's the one getting me well.

What would happen if he was forced to give out his services for free to certain patients? He'd have to raise the price for regular patients, right? And then those regular patients wouldn't be able to afford seeing him unless they got on the "free" list too. You see? It's a vicious cycle.

I understand there's a lot of people without money. But in our desperation lets not forget that doctors need to provide for themselves and their families, too.

Valentijn November 9, 2012 at 4:50 pm


Dainty

The problem is, there's no such thing as "free" healthcare. Someone, somewhere, has to pay the bills.

It appears to me that the affordable health care act will force health insurance companies to lose more money. Like any business, they have to make money in order to remain in existence. So if they're forced to lose money in this way, the result will be that they need to start charging more in order to stay ahead. They might raise the rates for everyone, or they might inflate the prices of prescription drugs and proceedures to even more ridiculous levels than they are today (there's no resource reason an MRI should cost more than $5, for example) or perhaps increasing the co-pay. Whatever the case, people end up paying more – either for the insurance to begin with, or if you don't have insurance you're paying more for procedures/drugs out of pocket because the insurance companies have jacked the price up so high.

Health insurance companies aren't making losses, so they aren't going to "lose more money". They might earn less money, but that's not necessarily a bad thing.

Obamacare requires that they spend at least 80% of premiums on medical care for their customers. So they can't arbitrarily jack up costs in order to make big profits.

Also, insurance costs are/were quite a bit higher in the US than in other countries with systems similar to what the US is moving toward. If costs are increasing, the problem probably isn't with the system in general.

Dainty November 9, 2012 at 4:54 pm


Valentijn

Health insurance companies aren't making losses, so they aren't going to "lose more money". They might earn less money, but that's not necessarily a bad thing.

Do you think they're going to be okay with earning less money, or do you think they're going to find another way to raise rates so that they aren't earning any less?

I strongly suspect the latter.

Emma November 9, 2012 at 5:02 pm

WELCOME BACK, CORT! We've missed you!

Dreambirdie November 9, 2012 at 5:07 pm


Dainty

Do you think they're going to be okay with earning less money, or do you think they're going to find another way to raise rates so that they aren't earning any less?

Insurance companies are mostly a HUGE SCAM. They are all about profiteering at the expense of consumers. There will have to be regulations placed on them, to prevent them from getting away with murder (literally) in the future.

My friend's daughter worked in France last summer, and while there she became ill with what turned out to be appendicitis. Her appendectomy in France cost $3000… which is the same price it would have been in Germany. What would the same surgery cost here in the US….? Anybody know? When my friend looked into it, she was told it would be around $28,000. :eek:

Health costs in this country are insane, and that's due to the FOR PROFIT insurance business. Obamacare was a start, but it's not enough. What we really need is a single payer system, with a private insurance option for those who want it and can afford it.

Emma November 9, 2012 at 5:14 pm


Sasha

Welcome back, Cort!

You're right that it's important to the whole world what the US govt spends on ME research because all the other budgets are tiny by comparison.

I think we need to challenge the poor level of funding given to ME, given that the disease severity profile is similar to that of MS but affects many more people. Even if budgets were to be cut, if we got our fair share, we'd have shedloads compared to what we're getting.

Dr Joan Grobstein, in her evidence for CFSAC, said:

"MS is estimated to affect approximately 400,000 Americans and receives $121 million per year from NIH for research. ME and CFS are estimated to affect at least 1,000,000 Americans. It therefore seems reasonable to allocate $302 million annually to ME and CFS research."

http://cfspatientadvocate.blogspot.co.uk/2012/10/cfsac-testimony-dr-joan-grobstein-on.html

I'd like to see a campaign for ME funding called 'Help us find our missing $302 million'. Imagine that in a newspaper ad, or on banners in front of the NIH building.

I agree, Sasha. I also thought this part from Dr Joan Grobstein's written testimony was excellent:

"NIH research funding for CFS is currently $6 million per year. This level of funding is 220th out of 232 diseases. There is no funding for ME, i.e., no funding that requires using the Canadian definition. There are no centers of excellence."
http://cfspatientadvocate.blogspot.co.uk/2012/10/cfsac-testimony-dr-joan-grobstein-on.html

How can the NIH find it reasonable that MS gets 20 times more money than ME/CFS, when ME/CFS in fact affects twice as many people? (so it's 40 times more per patient) What does the NIH respond to this type of question, does anyone know?

penny November 9, 2012 at 5:17 pm


Dreambirdie

Insurance companies are mostly a HUGE SCAM. They are all about profiteering at the expense of consumers. There will have to be regulations placed on them, to prevent them from getting away with murder (literally) in the future.

Yep, they need to be better regulated.

Going outside of the ME experience I watched the insurance companies squeeze my parents. The were self-employed with a successful small business for 20 years, very healthy in habits and lack of actual illnesses until my step-father came down with a serious neurological disorder. Their private insurance (they never went uninsured) doubled one year, doubled again the next, doubled again, etc. They saw the trend and because of it they had to close their business, my mother went back to school and got a job at a local university JUST for the benefits. She was ~50 when this started, working full time, going to school full time in addition to being a primary caregiver. This was, let's see probably in 2002-2006, so NOTHING to do with ACA, just with the greed and dysfunction of insurance companies.

This just doesn't seem right to me, and I don't see how we can condone such behavior (and worse!) just so a particular industry can keep lining their pockets.

Oh dear. Getting all upset now :eek:

Lou November 9, 2012 at 5:27 pm


Dainty

The problem is, there's no such thing as "free" healthcare. Someone, somewhere, has to pay the bills.

It appears to me that the affordable health care act will force health insurance companies to lose more money. Like any business, they have to make money in order to remain in existence. So if they're forced to lose money in this way, the result will be that they need to start charging more in order to stay ahead. They might raise the rates for everyone, or they might inflate the prices of prescription drugs and proceedures to even more ridiculous levels than they are today (there's no resource reason an MRI should cost more than $5, for example) or perhaps increasing the co-pay. Whatever the case, people end up paying more – either for the insurance to begin with, or if you don't have insurance you're paying more for procedures/drugs out of pocket because the insurance companies have jacked the price up so high.

I've read forums where massage therapists are telling each other how to get away with charging insurance companies a fortune. So insurance companies are forced to pay out easily 3 times the reasonable amount. They have to make up that difference somehow. They do it by charging more in other areas, just so they don't have to close shop.

It's a warped system, but forcing them to "help" us more will only warp the system further, from what I can see.

Regarding Medicaid. Do you know how much doctors get paid when you visit them with this "free" system? I found out that for an hour long appointment medicaid would only pay $50 to my doctor. Average cost of medical school is $140,000. No wonder so many doctors are refusing medicaid! They need to put food on the table, too. Medicaid recently asked me to find a new primary doctor on their system, and gave me a list to choose from. When my caregiver called several dozen on my behalf, every single one of them said they were not taking any new medicaid patients. I can't say I blame them. But I have to wonder….how does putting more people on medicaid help anything medically? I once shared an ER room with a woman experiencing very severe symptoms (was shockingly jaundiced, projectile vomitting, severe abdominal pain) and they sent her home with no help because nothing showed up on the CT scan. They of course stressed that she should follow up with her primary care doc, but as she told me she had not yet been able to find a doctor willing to take medicaid so the only help she could ever get was in the ER, where they only ran tests and bounced her out again.

That doesn't sound like the kind of care that would be helpful to someone with ME/CFS.

Issues in the medical system are complex, but I believe it's important when considering political changes to view all the ramifications on everyone and not just what would be easiest on us. Medicaid gave me the option of asking my doctor to get on their system. I couldn't do it. My doctor has bent over backwards to cut costs for his patients. He practices in a dinky run down shared office complex and works as his own secretary, and somehow manages to squeak by charging only $60 for subsequent visits. His reputation in the field is such that that every doctor of that specialty I've emailed accross the country recognizes him by name. He could easily charge three times that much as many doctors do, but instead he chooses to live by more humble means so that the average person can afford to see him.

If he can do that, I can choose to make sacrifices to be able to scrape together $60 to visit him once a month. And to top it all off, this is the doctor that's bringing about all this progress that I've been writing about. He's the one getting me well.

What would happen if he was forced to give out his services for free to certain patients? He'd have to raise the price for regular patients, right? And then those regular patients wouldn't be able to afford seeing him unless they got on the "free" list too. You see? It's a vicious cycle.

I understand there's a lot of people without money. But in our desperation lets not forget that doctors need to provide for themselves and their families, too.

"It appears to me that the affordable health care act will force health insurance companies to lose more money." Lose more money? I'm sorry, Dainty, that's as far as I could read.

Lou November 9, 2012 at 5:33 pm


Dainty

Do you think they're going to be okay with earning less money, or do you think they're going to find another way to raise rates so that they aren't earning any less?

I strongly suspect the latter.

They are potentially getting up to forty million new paying customers. It's all going to work out, my opinion.

penny November 9, 2012 at 5:36 pm


Sallysblooms

This kind of thread keeps coming up. We lose good people from the forum. Hate to see it again.

I've not participated in any of the other threads that looked politically touchy, since I voluntarily try to avoid threads I think may cause me stress, but it seems like people on this thread are separating the question of our health system (in all it's glory) from political positions. For example I disagree with Dainty but she's talking about health care and her concerns about the system and changing it, which are totally valid, and I for one am happy she shared them. And I hope my comments are similar, emotionally charged perhaps, but not at all focused on party affiliation or even right/left leanings. Just specific experiences, concerns and hopes about healthcare. (And I feel like I should clarify my "getting upset now" comment was because I was thinking about my parents and the insurance companies, not because of anything anyone on the thread posted!)

I guess I don't understand why this kind of discussion would drive people away from the forum?

alex3619 November 9, 2012 at 5:49 pm


Emma

How can the NIH find it reasonable that MS gets 20 times more money than ME/CFS, when ME/CFS in fact affects twice as many people? (so it's 40 times more per patient) What does the NIH respond to this type of question, does anyone know?

The NIH argue, based on my understanding of the last CFSAC, that there are inadequate numbers of quality research proposals, so ME/CFS misses out. In short, there are not enough researchers applying for grants.

The opposite argument has been raised by advocates however: if you fund it they will come.

Bye, Alex

Dainty November 9, 2012 at 5:53 pm


Lou

"It appears to me that the affordable health care act will force health insurance companies to lose more money." Lose more money? I'm sorry, Dainty, that's as far as I could read.

I'm sorry. I had a brainfog moment. "Earn less money" was hte proper phrasing, as Valentijn already pointed out and I acknowledged.

I do hope you can bring yourself to forgive this error of words.

Dainty November 9, 2012 at 6:07 pm


Dreambirdie

Insurance companies are mostly a HUGE SCAM. They are all about profiteering at the expense of consumers. There will have to be regulations placed on them, to prevent them from getting away with murder (literally) in the future.

My friend's daughter worked in France last summer, and while there she became ill with what turned out to be appendicitis. Her appendectomy in France cost $3000… which is the same price it would have been in Germany. What would the same surgery cost here in the US….? Anybody know? When my friend looked into it, she was told it would be around $28,000. :eek:

Health costs in this country are insane, and that's due to the FOR PROFIT insurance business. Obamacare was a start, but it's not enough. What we really need is a single payer system, with a private insurance option for those who want it and can afford it.

Actually, I think it's because health insurance companies have a monopoly on the industry right now.

Lets take food, for example. Lots of businesses sell or provide food as a for profit endever. They make money off of it. What keeps them from overinflating the prices? Why is food affordable? Is it regulation? No, it's competition. If grocery store X charges noticeably more than grocery store Y for the same product then people will go to grocery store Y instead.

Yes, what they're getting away with is a scam. Think regulations will stop them from being scammers? Stop them from finding a way to earn a boatload of money? There's still plenty of other areas where they can raise prices.

Healthy competition, somehow, someway, would bring down the price. You say we need a "private insurance option for those who can afford it" – yet you've called it a scam. So scams should be reserved for those who can afford them? Gotta say I don't agree with that reasoning.

camas November 9, 2012 at 6:14 pm

Under the Affordable Care Act (aka Obamacare) on January 1, 2013 Medicaid reimbursements for primary care services will increase to match Medicare rates. Hopefully this will be an incentive for more doctors to take on Medicaid patients.

Dreambirdie November 9, 2012 at 6:25 pm


Dainty

You say we need a "private insurance option for those who can afford it" – yet you've called it a scam. So scams should be reserved for those who can afford them? Gotta say I don't agree with that reasoning.

If rich people with plenty of money to spare are not happy with a single payer system, then yes, I think they should have an option to spend as much of their millions on insurance as they choose. The rest of us should have a single payer system to fall back on when we need it. Most western industrialized countries in the world have this. And we would have had it too if certain elements in our government hadn't put up a huge resistance to making that happen.

I'd rather have single payer healthcare system than a prolonged war in Iraq and Afghanistan. Like it or not, that's where our billions went. It's all about budget and priorities.

Hopefully, we can get on the right track in the next 4 years, and make the PEOPLE of this country the priority,

That's my reasoning.

Cort November 9, 2012 at 6:41 pm


Emma

WELCOME BACK, CORT! We've missed you!

Thanks Emma, its nice to get a blog in :) (now if I can just get that picture off my post :eek: )

Cort November 9, 2012 at 6:51 pm


camas

Under the Affordable Care Act (aka Obamacare) on January 1, 2013 Medicaid reimbursements for primary care services will increase to match Medicare rates. Hopefully this will be an incentive for more doctors to take on Medicaid patients.

That's good news. .Since alot of the poor and uninsured will now be under Medicare it will certainly create a huge new pool of patients. It'll be interesting to see where they will go particularly since I will likely be in that pool. That would save me and my family about $2500 a year….

dannybex November 9, 2012 at 6:52 pm

In reply to Dainty: The answer is simple and complicated, and of course political too.

But simple, in that more money obviously needs to be allocated to Medicaid (I didn't realize until after posting that the Obama plan is designed to increase payments to doctors). It's complicated, because of the politics involved, and the stereotype that most medicaid patients are "using" the system in order to not have to buy insurance. It would also help big time if medicaid and other docs would actively promote preventative care, rather than ignoring patients complaints until they need a heart bypass, which we all know costs more than $50.

Doctors, hospitals, and medical care in general worked much better, and was much, much cheaper before the insurance companies and HMO's got in "the business" and had to listen to shareholders who need to see increasing profits for their investments to pay off. They're done very well. Much better than the patients they're supposedly serving.

I apologize if I'm coming off as ranting and/or if I've hijacked the thread.

Valentijn November 9, 2012 at 6:57 pm


Dainty

Healthy competition, somehow, someway, would bring down the price. You say we need a "private insurance option for those who can afford it" – yet you've called it a scam. So scams should be reserved for those who can afford them? Gotta say I don't agree with that reasoning.

I'm not sure competition alone is enough. Theoretically, we have the system set up now to allow that to happen, and it doesn't seem to be working very well. I don't know how that could be made to work better without increasing direct regulations on health insurers.

In the Netherlands, health insurance companies have to offer the "basic" policy (way better than anything I've had in the US), for a certain maximum price – currently about 110 euros per month I think. Then those companies can compete with each other by 1) offering the basic policy for cheaper than their competitors, 2) offering better services with the basic policy, and/or 3) how they handle their non-basic policies.

This does cover at least some ME/CFS "specialist" visits, and part of (mostly useless) ME/CFS "therapist" visits. It has covered 100% of my ME-related referrals and prescribed drugs. I don't see why a similar system wouldn't work in the US – the main problem for us in any accessible system is going to remain to be getting seen by real specialists.

Cort November 9, 2012 at 7:00 pm


Sasha

I realise I'm a Brit so don't have a US perspective on this but I'd love to see this thread discussing how we can make the most of Obama having been re-elected. Does this present us with new opportunities for research funding? What should we be doing to get it?

I think it allows us the opportunity to capitalize on what Bob and Courtney Miller produced with the Obama Promise. That will take some work….but that was a powerful statement and it could be very helpful…We should assess the state of chronic fatigue syndrome at the NIH and determine if its changed at some point…maybe six months; ie; has CFS priority been elevated? and if not sufficiently then back to Pres Obama we go.

I don't know its going to be research funding,though. The NIH's budget is tighter than a……well – its very tight. I looked at funding NIH wide from 2010-2012…From 2010 to 2011 there were small changes in funding – sometimes a bit up and sometimes a bit down depending on which disease you looked at…but the status quo prevailed…From 2011-2012 I couldn't find any changes – funding appears to have been completely frozen across the board and it looks like the same is true for 2013….

Dainty November 9, 2012 at 7:01 pm


Dreambirdie

If rich people with plenty of money to spare are not happy with a single payer system, then yes, I think they should have an option to spend as much of their millions on insurance as they choose. The rest of us should have a single payer system to fall back on when we need it. Most western industrialized countries in the world have this. And we would have had it too if certain elements in our government hadn't put up a huge resistance to making that happen.

And why do you think that only the rich will ever find themselves in need of treatment not covered by this "single payer system"?

Cort November 9, 2012 at 7:02 pm


Bob

Interesting article thanks, Cort.

Could anyone clarify the above quote, please?

Is it a reference to the income levels that qualify for subsidies, or the amount of subsidies available to each family? (I have no idea how much health care costs in the US.)

I'm actually not sure which might get hacked; I suppose it could be either one.

Dainty November 9, 2012 at 7:06 pm


Valentijn

I'm not sure competition alone is enough. Theoretically, we have the system set up now to allow that to happen, and it doesn't seem to be working very well.

Well in order to work it has to actually happen, not just be theoretically possible. ;)

But I know what you mean. There's actually some fairly decent insurance alternatives out there. I know one that's basically just a massive group of people who pay each other's medical bills. There are certain lifestyle requirements to belonging in the group that help keep costs down, and to my understanding it's not only cheaper but run with more integrity, particularly since it's a non-profit.

Cort November 9, 2012 at 7:06 pm


Dainty

The problem is, there's no such thing as "free" healthcare. Someone, somewhere, has to pay the bills.

It appears to me that the affordable health care act will force health insurance companies to lose more money. Like any business, they have to make money in order to remain in existence. So if they're forced to lose money in this way, the result will be that they need to start charging more in order to stay ahead. They might raise the rates for everyone, or they might inflate the prices of prescription drugs and proceedures to even more ridiculous levels than they are today (there's no resource reason an MRI should cost more than $5, for example) or perhaps increasing the co-pay. Whatever the case, people end up paying more – either for the insurance to begin with, or if you don't have insurance you're paying more for procedures/drugs out of pocket because the insurance companies have jacked the price up so high.

I think one reason the health insurance companies signed onto the act to the extent they did is that it does open a huge new pool of young people to them who will pay premiums and help their bottom line…

The private companies will be in competition with the two government plans as well..Its going to be really interesting..

Good point on Medicaid and the poorer services that may be available……I imagine that you'll be able to pick your plan if you're low income; the govt will allow you to participate in Medicaid or it will subsidize your choice of another plan.

Dainty November 9, 2012 at 7:18 pm


Cort

The private companies will be in competition with the two government plans as well..Its going to be really interesting..

How is it competition if the government plans are all free to the end user?

Cort

I imagine that you'll be able to pick your plan if you're low income; the govt will allow you to participate in Medicaid or it will subsidize your choice of another plan.

Could you elaborate on this?

taniaaust1 November 9, 2012 at 8:20 pm


Dainty

Regarding Medicaid. Do you know how much doctors get paid when you visit them with this "free" system? I found out that for an hour long appointment medicaid would only pay $50 to my doctor. Average cost of medical school is $140,000. No wonder so many doctors are refusing medicaid! They need to put food on the table, too. Medicaid recently asked me to find a new primary doctor on their system, and gave me a list to choose from. When my caregiver called several dozen on my behalf, every single one of them said they were not taking any new medicaid patients. I can't say I blame them. But I have to wonder….how does putting more people on medicaid help anything medically? I once shared an ER room with a woman experiencing very severe symptoms (was shockingly jaundiced, projectile vomitting, severe abdominal pain) and they sent her home with no help because nothing showed up on the CT scan. They of course stressed that she should follow up with her primary care doc, but as she told me she had not yet been able to find a doctor willing to take medicaid so the only help she could ever get was in the ER, where they only ran tests and bounced her out again.

That doesn't sound like the kind of care that would be helpful to someone with ME/CFS.

Issues in the medical system are complex, but I believe it's important when considering political changes to view all the ramifications on everyone and not just what would be easiest on us. Medicaid gave me the option of asking my doctor to get on their system. I couldn't do it. My doctor has bent over backwards to cut costs for his patients. He practices in a dinky run down shared office complex and works as his own secretary, and somehow manages to squeak by charging only $60 for subsequent visits. His reputation in the field is such that that every doctor of that specialty I've emailed accross the country recognizes him by name. He could easily charge three times that much as many doctors do, but instead he chooses to live by more humble means so that the average person can afford to see him.

If he can do that, I can choose to make sacrifices to be able to scrape together $60 to visit him once a month. And to top it all off, this is the doctor that's bringing about all this progress that I've been writing about. He's the one getting me well.

What would happen if he was forced to give out his services for free to certain patients? He'd have to raise the price for regular patients, right? And then those regular patients wouldn't be able to afford seeing him unless they got on the "free" list too. You see? It's a vicious cycle.

I understand there's a lot of people without money. But in our desperation lets not forget that doctors need to provide for themselves and their families, too.

"Regarding Medicaid. Do you know how much doctors get paid when you visit them with this "free" system? I found out that for an hour long appointment medicaid would only pay $50 to my doctor. "

Over here in Australia where we already have a free health medicare system.. most doctors do not do 1 hr appointments but I know my last CFS specialist appointment.. for a one and a half hr appointment, medicare paid him just over $100 (i think was ($105). I dont know whether your system is going to work the same but some of these doctors on top also charge the patient what is called here a "gap payment" .. often this is just a very small amount that most patients can afford (eg $25-$30) . He unfortunately had a gap payment of over $200 which I had to pay on top (most doctors thou dont charge like that). This doctor has a very flash house in a very flash area in which he also has his own clinic with a beautiful stream going throu the place etc etc

Even my other CFS specialist who at times Ive had up to 3hr appointments with him.. and wasnt changing me any gap (so completely free to me) so solely relying on the medicare payment.. seemed to be doing okay money wise (had a big properly, very nice cars etc etc.). This specialist thou didnt precribe meds due to him choosing to have no insurance against someone sueing him for anything as he didnt want to pay those high costs to protect himself when he was choosing to only work part time..(so he got around that issue by doing letters to my GP and telling him what I needed to be on and asking my GP to prescribe).

All I can say is that Ive never known a doctor here to be poor thou we have a so called free medicare system here.

Yes doctors do charge a lot to do uni etc but they certainly do do financially MUCH BETTER then a lot of other kinds of jobs. Even at $100 for one and a half hours work to me dont sound bad at all. (When I was able to work.. all I got was under $19 per hour and that was for housecleaning and gardening work which is probably harder then sitting at a desk dealing with patients.

Dreambirdie November 9, 2012 at 8:24 pm

This report on the REAL NEWS explains what a single payer plan would look like in Maryland. It also goes into the huge amount of waste (in terms of money and time) that goes into insurance claim management.

"a recent study looking at a potential single-payer or government-run health insurance plan for Maryland comes to the conclusion there'd be enormous savings over the existing plan."

http://therealnews.com/t2/index.php?option=com_content&task=view&id=31&Itemid=74&jumival=8648

Dreambirdie November 9, 2012 at 8:26 pm


taniaaust1

Yes doctors do charge a lot to do uni etc but they certainly do do financially MUCH BETTER then a lot of other kinds of jobs. Even at $100 for one and a half hours work to me dont sound bad at all.

I really appreciate hearing about healthcare systems in Australia and Europe. It sounds to me like a much much better deal than what we have here.

HowToEscape? November 9, 2012 at 8:44 pm

Nothing is going to happen unless we fight for it, and we have to make a case that appeals to people outside our circle.

We should use case (substantial in number) of productive people who can no longer work. There are people with ME who were formerly paying substantial amounts of tax, often being W-2 in the 100-200K range, or athletes & other people who are obviously not sloths. Most people don't know or believe this is possible.

Let's say there are 1M known to have ME in the US. For this example, let's say 2/3 are under 65 and 2/3 of those had medium skilled or better employment. Because ME is not easily diagnosed, I suspect the currently known cohort skews to the more middle and up simply because they eventually get to a doc who diagnoses ME/CFIDS. Can't prove that, it's just what I see.
SO, that's about 1/2M who would be paying about $30K/yr each in Federal, payroll and Medicaid taxes. That does not including state and property tax. The loss of Federal tax alone is six billion dollars. The loss of productivity (total output) is likely over 50 Billion. This does not include the trickle of SSA, Medicare or Medicaid received. With better data one could deliver numbers with a firmer foundation, I believe they would also be larger.

—— Thus, present ME as an economic loss of >50 billion.
Is it not worth spending 2% of that (1 B) annually to cure the disease?

HowToEscape? November 9, 2012 at 9:09 pm


Sallysblooms

I wouldn't want to judge any healthcare system anywhere in the world by how they treat their ME patients. By that standard, they're all failures.

Not at all. Many of us are doing very well.

Where?

First I've _ever heard of someone with ME finding the health system works to effectively treat their disease.

alex3619 November 9, 2012 at 9:33 pm


Dreambirdie

This report on the REAL NEWS explains what a single payer plan would look like in Maryland. It also goes into the huge amount of waste (in terms of money and time) that goes into insurance claim management.

"a recent study looking at a potential single-payer or government-run health insurance plan for Maryland comes to the conclusion there'd be enormous savings over the existing plan."

http://therealnews.com/t2/index.php?option=com_content&task=view&id=31&Itemid=74&jumival=8648

If this data is accurate, and if it reflects on average the US situation, then projecting these savings across the USA is way over one hundred billion dollars (on the order of $166 Billion) country wide, based on basic admin savings of 3.1 billion, which is only part of it. Thats a huge impost the American public is paying under existing arrangements. Private insurance according to this has administrative costs roughly seven times what the proposed new insurance system would cost. Thats big money. On average its about $533 per person in the USA.

In comparing a hospital in Canada with USA, of a similar size in doctors in patients, the Canadian hospital needed 2 people to handle insurance, an American hospital they compared this to needs 450. Is this efficient?

They then go on to analyze other savings. It looks like the average saving in total per person in the USA is over $2200. That is, the insurance could be $2200 cheaper per annum and possibly $2275 per person cheaper. How is this different from paying for big government? Big insurance amplifies the costs.

The increase in doctor availability due to simplified administration would help ease the burden on poor availability of doctors, though the increase in patients seeing doctors would probably absorb this.

To put this in perspective though, part three will discuss increased costs. They were not addressed in this talk, this was about savings. Part 3 is here:
http://therealnews.com/t2/index.php?option=com_content&task=view&id=31&Itemid=74&jumival=8670

In Maryland, despite the savings total cost would probably be almost as high, but this would be because of everyone getting healthcare. The benefit to the economy would also make things better. Business administration costs would also decrease substantially, providing a further boost to businesses. It would also make businesses more profitable in Maryland. Reduced costs, increased health, bigger economic growth and increased business competitiveness … its no wonder some are calling this a no brainer. However this is still all theory. In reality I think some state is going to have to do this, find out the real costs and then the country could decide.

Here is a written article by the same guy on this topic:
http://www.dollarsandsense.org/archives/2012/0312friedman.pdf

On the flip side this would be a state run monopoly. Sure its efficient .. but what is next? Many other essential services are being inefficiently run by being managed by private enterprise (power companies come to mind). Others are much more efficiently run by business than government. Who gets to decide?

Sing November 9, 2012 at 9:39 pm

In regard to the cost of medical services for us, having an un-treated or ineffectively treated illness for decades costs a very great deal when you count the expense of seeing doctors and other practitioners to no avail as well as the pay lost from employment. If science could come up with effective means of diagnosis then treatment for us, all this waste could finally stop. The cost of effective diagnosis and treatment would be far less, in comparison with the cost of a disabling chronic illness from time of onset to time of death, because right now the situation is known to be this: no diagnostic criteria yet agreed upon by the medical establishment, no biomarkers or tests, no treatments and no cure. To think that this "no nothing" disease is not expensive, however, is foolish. Let's estimate not only the cost of lost wages but the cost of all those medical appointments and treatments that don't work. Maybe some of us could come up with an estimate. Maybe a researcher could design another questionnaire for this purpose. That is what the government ought to put into its calculations when it weighs how much money to commit to good research, then into the institutional changes necessary in how we will be evaluated and treated.

Snow Leopard November 9, 2012 at 10:27 pm


alex3619

The NIH argue, based on my understanding of the last CFSAC, that there are inadequate numbers of quality research proposals, so ME/CFS misses out. In short, there are not enough researchers applying for grants.

Which sounds like a catch-22. Researchers don't bother putting in applications, because there is not enough money to get enough funding (and to make a career in CFS research), when asked about the lack of funding, officials claim it is due to lack of applications.

alex3619 November 9, 2012 at 10:41 pm


Sing

In regard to the cost of medical services for us, having an un-treated or ineffectively treated illness for decades costs a very great deal when you count the expense of seeing doctors and other practitioners to no avail as well as the pay lost from employment.

I use an old figure of 20-30 billion $ for the USA, which for simplicity I call $25 billion. Since the world economy used to be roughly four times the USA, I project a world cost of $100 billion. I have long argued that its crazy to willingly lose a hundred billion per year (this includes lost productivity) and not do much about it. Its crazy politics, crazy medicine, and
crazy economics. I put a fair research fund for CFS in the USA alone at about $120 million per year, or 20x the current rate. However I think the rest of the world should be thinking about an additional $360 million. The USA should not be one of the few countries to be paying for this.

ggingues November 10, 2012 at 12:15 am


Dainty
Valentijn

Health insurance companies aren't making losses, so they aren't going to "lose more money". They might earn less money, but that's not necessarily a bad thing.

Do you think they're going to be okay with earning less money, or do you think they're going to find another way to raise rates so that they aren't earning any less?

I strongly suspect the latter.

Or find another profession, with less stress and a more reasonable way to make a living?

GG

ggingues November 10, 2012 at 12:56 am


dannybex

In reply to Dainty: The answer is simple and complicated, and of course political too.

Doctors, hospitals, and medical care in general worked much better, and was much, much cheaper before the insurance companies and HMO's got in "the business" and had to listen to shareholders who need to see increasing profits for their investments to pay off. They're done very well. Much better than the patients they're supposedly serving.
.

And some people think that Medicare is big reason costs increased so much. the more gov't subsidizes something, the more of it you get with inflation. Look at housing and education as other examples. The gov'ts fix always creates unintended consequences. People react to externalities and internal workings. therefore I doubt that gov't is the solution and this bill is already expected to cost 2 times as much as sold as, and will continue to grow. But hey, we can just print more money, and there will be no consequences, right?

Didn't doctors actually make home visits back in the "old days"? Which I am sure our bedbound patients would like. No system is perfect, but we should probably go with the one that causes less damage.

GG

ggingues November 10, 2012 at 1:00 am


Valentijn

I'm not sure competition alone is enough. Theoretically, we have the system set up now to allow that to happen, and it doesn't seem to be working very well. I don't know how that could be made to work better without increasing direct regulations on health insurers.

In the Netherlands, health insurance companies have to offer the "basic" policy (way better than anything I've had in the US), for a certain maximum price – currently about 110 euros per month I think. Then those companies can compete with each other by 1) offering the basic policy for cheaper than their competitors, 2) offering better services with the basic policy, and/or 3) how they handle their non-basic policies.

This does cover at least some ME/CFS "specialist" visits, and part of (mostly useless) ME/CFS "therapist" visits. It has covered 100% of my ME-related referrals and prescribed drugs. I don't see why a similar system wouldn't work in the US – the main problem for us in any accessible system is going to remain to be getting seen by real specialists.

Do they post prices in the Netherlands? Because it is hard to find out the price here in the USA, so people cannot smartly shop around, if they have the time.

GG

PS Another idea would be Health Savings Accounts, where the money rolls over, so people can start saving at a young age and when they get older they have a pool of money to pull from to take care of themselves. Of course this is not helpful to young people with costly conditions, but I would think something else could be figured out.

Sasha November 10, 2012 at 2:53 am


Cort

I don't know its going to be research funding,though. The NIH's budget is tighter than a……well – its very tight. I looked at funding NIH wide from 2010-2012…From 2010 to 2011 there were small changes in funding – sometimes a bit up and sometimes a bit down depending on which disease you looked at…but the status quo prevailed…From 2011-2012 I couldn't find any changes – funding appears to have been completely frozen across the board and it looks like the same is true for 2013….

That's my point, though – ME funding is so tiny compared to ME's impact on people in terms of severity and numbers that simply giving us our fair share would hugely increase the ME research funding budget, even if the NIH budget were decimated: literally decimated, cut to 10% of its current size. Cuts in the NIH budget are a complete red herring in the ME funding situation. Fair redistribution is what we need to focus on.

Sasha November 10, 2012 at 3:01 am


Dainty

There's actually some fairly decent insurance alternatives out there. I know one that's basically just a massive group of people who pay each other's medical bills. There are certain lifestyle requirements to belonging in the group that help keep costs down, and to my understanding it's not only cheaper but run with more integrity, particularly since it's a non-profit.

That's interesting. I know pretty much zilch about the US healthcare system but in the UK, our NHS (National Health Service) is paid for through our taxes and everyone can use it, free at point of use. There is never a bill to pay and no lifestyle requirements. There's no such thing as being too poor to afford a heart bypass: if you need one, you get one (or you get on the waiting list, if there is one). There's also, in parallel, a private healthcare system in which better-off people pay health insurance or one-off fees for treatment if they don't want to wait or want an elective procedure that the NHS don't fund, but it's used by a minority (about 8%, according to Wikipedia).

Bob November 10, 2012 at 4:21 am


Dainty
Cort

The private companies will be in competition with the two government plans as well..Its going to be really interesting..

How is it competition if the government plans are all free to the end user?

Cort

I imagine that you'll be able to pick your plan if you're low income; the govt will allow you to participate in Medicaid or it will subsidize your choice of another plan.

Could you elaborate on this?

I might be wrong about this Dainty, but my understanding is that a big feature of the new system, is that the US government is going to negotiate to buy into two different private insurance plans itself (one of which must be run by a non-profit), which will both be available for all citizens to buy. These are not medicaid etc, but are normal insurance plans available to citizens to buy, and they will be in competition with all the usual insurance plans.

Each state can organise this for themselves, or the federal government will provide it to any states that don't organise it.

I might be wrong, but that's what I've read.

Emma November 10, 2012 at 8:21 am


alex3619
Emma

How can the NIH find it reasonable that MS gets 20 times more money than ME/CFS, when ME/CFS in fact affects twice as many people? (so it's 40 times more per patient) What does the NIH respond to this type of question, does anyone know?

The NIH argue, based on my understanding of the last CFSAC, that there are inadequate numbers of quality research proposals, so ME/CFS misses out. In short, there are not enough researchers applying for grants.

The opposite argument has been raised by advocates however: if you fund it they will come.

Bye, Alex

Thanks Alex, I've heard that too. But with that reasoning/excuse, they should be able to say that if they just got good enough applications, they would be willing to fund ME/CFS research at a level corresponding to, for example, that of MS, right?

I haven't been able to watch the CFSAC meetings myself, but I read in this great report from the October meeting: http://www.masscfids.org/resource-library/15/423
this quote:
"When many present indicated that a major increase in funding is necessary, for example $100,000,000, Susan Maier seemed to find that totally unrealistic"

- and yet, as Dr Grobstein points out, $250 million or even $300 million would be adequate and in line with MS research, given the double prevalence of ME/CFS compared to MS.

It would be interesting to hear the NIH comment on what level of funding they think would be appropriate for ME/CFS. (Cort, any chance you could get an interview with Dr Maier? Or could any of you advocates who are in active dialogue with the agencies try to get through?)

Valentijn November 10, 2012 at 10:05 am


ggingues

Do they post prices in the Netherlands? Because it is hard to find out the price here in the USA, so people cannot smartly shop around, if they have the time.

It seems like they have to have their rate listed somewhere, or maybe they just do that to advertise. There used to be a website comparing the services, but that got bought by one of the insurance companies about a year ago. But health insurance ends up in the news pretty often, so I'd guess most people know what companies are offering the lowest rates for the basic policy – as an example, my insurer and another were even in the English-language Dutch news a few days ago because they're reducing their policy rates by a few euros compared to last year: http://www.dutchnews.nl/news/archives/2012/11/cz_cuts_cost_of_basic_health_i.php

One article also mentioned that most people (60%?) have never changed insurers during the yearly period when it's possible (November and/or December?). Prices are generally clustered pretty close together, and all at or under the maximum amount they're allowed to charge, so for the basic plan it's a matter of a few euros per month.

Dreambirdie November 10, 2012 at 10:37 am


Sasha

That's interesting. I know pretty much zilch about the US healthcare system but in the UK, our NHS (National Health Service) is paid for through our taxes and everyone can use it, free at point of use. There is never a bill to pay and no lifestyle requirements. There's no such thing as being too poor to afford a heart bypass: if you need one, you get one (or you get on the waiting list, if there is one). There's also, in parallel, a private healthcare system in which better-off people pay health insurance or one-off fees for treatment if they don't want to wait or want an elective procedure that the NHS don't fund, but it's used by a minority (about 8%, according to Wikipedia).

Hey Dainty–

What Sasha said. (my bolds) This is what I was previously trying to explain to you. Now I have a concrete example. Thanks Sasha.

nanonug November 10, 2012 at 10:50 am


Dreambirdie

I really appreciate hearing about healthcare systems in Australia and Europe. It sounds to me like a much much better deal than what we have here.

I was born in one of the European countries with England-style healthcare. My experience is that, at best, it was not better than Medicaid in the US. I consider Medicaid to be quite bad. Basically, NHS-style healthcare is having Kaiser Permanent for the whole country and you are forced to pay into the "company" whether you like it or not.

In the US, the elephant in the room that I see no one addressing is the cost of healthcare. This cost is not driven by insurance companies, it is driven by healthcare providers. AMA and friends create an environment of artificial scarcity and that, together with 20-year patents and FDA protectionism, results in a captive market. This has to end. One first easy step would be allowing the legal re-importation of drugs. This would result in lower prices for Americans and, incidentally, higher prices for the rest of the world. As things stand right now, Americans are subsidizing other countries healthcare systems.

Bob November 10, 2012 at 11:39 am


nanonug

I was born in one of the European countries with England-style healthcare. My experience is that, at best, it was not better than Medicaid in the US. I consider Medicaid to be quite bad. Basically, NHS-style healthcare is having Kaiser Permanent for the whole country and you are forced to pay into the "company" whether you like it or not.

There are both good and bad aspects to the NHS.
It's certainly not perfect, and there is room for lots of improvement, but unfortunately the amount of funding available to the NHS is a political issue, and it has been chronically underfunded, IMO.
The ultimate question about the NHS, is to ask people in the UK if they would rather replace it with a private insurance system.
I'm pretty certain that a huge majority would rather keep the NHS.

Shell November 10, 2012 at 11:53 am

nanonug says much as I would say.
In answer to the question of whether Obama's second term will help people with ME – I would say probably not.
The Medicaid budget has already been slashed so paying doctor more with less means less care to the patient doesn't it?
And I've already heard a couple of small business owners that side of the pond saying they might have to drop health care coverage altogether as things are moving. How will that be good?

The NHS is very good if you are healthy. Don't whatever you do, get ill though. Don't get old either. I have three friends now in the last year who have had a full on fight to get basic antibiotics for elderly relatives. A FIGHT to get humane treatment for an old person!
My elderly neighbour was sent home from A &E after I called an ambulance for her and left for 10 days in great pain because no one bothered to look at her x-ray which showed she had broken her arm.
I've already talked about the shoddy care my friend with breast cancer received. Thankfully her mother paid for some private care or maybe she wouldn't be here today.
My son is being leaned on not to check his blood sugars very often because the docs don't want to provide the test strips. Thankfully he gets pretty good care overall although he can't get a pump for love nor money despite his problems with injection sites. How the future will go for him I don't know (he's only 23 and there's no cure for type 1 as yet)
There's a media backed push here to stop type 1 and other insulin dependant diabetics having the modern insulins, but have the old ones. They lied on the Channel 4 programme about how well the old pig insulins worked. I know how they worked as I nursed a whole load of diabetics many of whom died.

The top heavy beaurocracy of the NHS is a very expensive shambles and the corruption caused a friend of my breast cancer survivor friend to quit his job in NHS accounts. I too saw the astonishing money wastage on corrupt systems up close when I was working.

Also all you people still somehow living in comfy-sofa land, please remember that the cost of living over here is horrible and made much much worse by the astoundingly heavy tax burden we have. Those of us who are married with children on ONE wage are really struggling.
I spent last winter with the kids in sleeping bags during the day because we couldn't afford to have the heating on.
GET REAL – there is no "affordable health care". No politician is going to be a saviour. Expediancy is the middle name of all of them.

And just for the sake of argument if better ME care happened to come but we were still seeing health care being removed from the elderly, (the obligation to die effect) the sick new born and disabled children (as is happening here) then I would rather stay this sick or worse. I don't want better care at the expense of someone else thanks a lot.

Bob November 10, 2012 at 12:27 pm


Shell

nanonug says much as I would say.
In answer to the question of whether Obama's second term will help people with ME – I would say probably not.
The Medicaid budget has already been slashed so paying doctor more with less means less care to the patient doesn't it?
And I've already heard a couple of small business owners that side of the pond saying they might have to drop health care coverage altogether as things are moving. How will that be good?

The NHS is very good if you are healthy. Don't whatever you do, get ill though. Don't get old either. I have three friends now in the last year who have had a full on fight to get basic antibiotics for elderly relatives. A FIGHT to get humane treatment for an old person!
My elderly neighbour was sent home from A &E after I called an ambulance for her and left for 10 days in great pain because no one bothered to look at her x-ray which showed she had broken her arm.
I've already talked about the shoddy care my friend with breast cancer received. Thankfully her mother paid for some private care or maybe she wouldn't be here today.
My son is being leaned on not to check his blood sugars very often because the docs don't want to provide the test strips. Thankfully he gets pretty good care overall although he can't get a pump for love nor money despite his problems with injection sites. How the future will go for him I don't know (he's only 23 and there's no cure for type 1 as yet)
There's a media backed push here to stop type 1 and other insulin dependant diabetics having the modern insulins, but have the old ones. They lied on the Channel 4 programme about how well the old pig insulins worked. I know how they worked as I nursed a whole load of diabetics many of whom died.

The top heavy beaurocracy of the NHS is a very expensive shambles and the corruption caused a friend of my breast cancer survivor friend to quit his job in NHS accounts. I too saw the astonishing money wastage on corrupt systems up close when I was working.

Also all you people still somehow living in comfy-sofa land, please remember that the cost of living over here is horrible and made much much worse by the astoundingly heavy tax burden we have. Those of us who are married with children on ONE wage are really struggling.
I spent last winter with the kids in sleeping bags during the day because we couldn't afford to have the heating on.
GET REAL – there is no "affordable health care". No politician is going to be a saviour. Expediancy is the middle name of all of them.

And just for the sake of argument if better ME care happened to come but we were still seeing health care being removed from the elderly, (the obligation to die effect) the sick new born and disabled children (as is happening here) then I would rather stay this sick or worse. I don't want better care at the expense of someone else thanks a lot.

You are complaining about 'high taxes', and about poor NHS care, at the same time.
But that's exactly why the NHS is chronically underfunded: It's because its funding is a tax-related political issue, and so it always has downwards pressure on it.

I suggest that the low living standards in the UK are primarily related to income distribution, and low wages, rather than taxes.
Do you think you would be better off if you had to pay for private health care insurance for your family, instead of paying through the tax system?

Wayne November 10, 2012 at 12:56 pm


Dreambirdie

My friend's daughter worked in France last summer, and while there she became ill with what turned out to be appendicitis. Her appendectomy in France cost $3000… which is the same price it would have been in Germany. What would the same surgery cost here in the US….? Anybody know? When my friend looked into it, she was told it would be around $28,000. :eek:

I saw a news segment recently where a number of institutions were researched to find out what they charge for appendectomies. The cost ranged from about $2,500 to $187,000 (no, I did not just enter a typo). In other words, one institution will charge $184,500 more than another.

Also, different institutions charge different amounts for services depending on whether or not insurance is covering them. It's not at all unusual for non-insured patients to be charged TWICE as much for services, apparently because they don't have "volume" purchasing power.

I watched a report recently regarding our entire health care system in the US. What they state right up front is that about 30% (~$800 B) of what the US spends on health care is wasted on unnecessary tests and procedures. Most of this is pocketed by providers who are trying to maximize profits. To me, this contrasts quite sharply with the notion that recipients of the US social safety net are the primary reason for our health care crisis.

Wayne November 10, 2012 at 1:17 pm


Snow Leopard

Which sounds like a catch-22. Researchers don't bother putting in applications, because there is not enough money to get enough funding (and to make a career in CFS research), when asked about the lack of funding, officials claim it is due to lack of applications.

I think it should be noted that for the longest time in the US, if a researcher expressed any real interest in CFS, it was a surefire "career killer". CFS has been ridiculed and marginalized for so long within the mainstream US medical establishment, and is at least one other reason besides lack of funding that it has been so under-researched.

monobear November 10, 2012 at 2:30 pm

I usually don't post in the forums due to push-crash, but I found this thread very interesting. I tend to be in agreement with Dainty, nanonug, and the others who see the new term as not helpful to patients, particularly w/r/t the new healthcare law and its bevy of regulations and taxes. In addition to what they wrote, I'd like to add a few comments.

It seems to me that, given the reality of the current debt and bad economy, simply hoping for an increased research budget is not necessarily the most realistic option for our community. The one place our govt could make quick and inexpensive changes that would have an immediate impact would be through streamlining and easing the FDA drug approval process. Right now drug approval is so burdensome that many drug companies are giving up trying to develop drugs for more rare and poorly understood diseases because the cost of getting the drugs approved is far too high to be justified (just look at what Ampligen is going through!). Juan Enriquez gave a great TEDMED talk on this. If companies saw a better chance for approval, they'd be more willing to invest in the r&d necessary to better understand a financially riskier disease such as ours and would be more receptive to proposals from our scientists.

I know the FDA is (very slowly) starting to change towards this goal, but I think a Romney administration would have been much more incentivized to give the FDA the institutional reform it needs to really overhall a broken system and get these reforms going full speed. I don't see the current administration seeing any type of streamlining as a priority. I know this is a very complex and sensitive topic, but given current realities, outside-the-box thinking is going to be increasingly important. Sadly, I only see resistance to that. I hope I am wrong.

Dainty November 10, 2012 at 2:59 pm


Sasha

That's interesting. I know pretty much zilch about the US healthcare system but in the UK, our NHS (National Health Service) is paid for through our taxes and everyone can use it, free at point of use. There is never a bill to pay and no lifestyle requirements. There's no such thing as being too poor to afford a heart bypass: if you need one, you get one (or you get on the waiting list, if there is one). There's also, in parallel, a private healthcare system in which better-off people pay health insurance or one-off fees for treatment if they don't want to wait or want an elective procedure that the NHS don't fund, but it's used by a minority (about 8%, according to Wikipedia).

I've heard that's how it works. However I personally have two major concerns with such a system here in the U.S.:

1) I've also heard that with NHS a doctor is only allowed to treat CFS with CBT or GET, and that they risk losing their license if they prescribe any medical treatments for it. I believe that it's essential to medicine that doctors are able to remain autonomous in their practice. That is, they get to decide what's best for their patients and practice accordingly. Once you get the government deciding which treatments doctors are allowed to administer for which conditions, private practice disappears, except for those who can afford to pay ridiculous expense for it. My doctor has stated if this actually happens he'll be forced to opt out of the system entirely, and everyone who sees him will have to pay out of pocket. Many other doctors he knows agrees with him, because they must be able to practice independantly in order to give their patients the level of care required.​
2) Here in the U.S. we have a massive problem with illegal immigration, primarily from Mexico. Illegal immigrants tend to be below the poverty line, and legitimately need health services but do not pay taxes. Emergency Rooms are put in the tricky position of caring for such people without compensation. This page gives a quick rundown of the issue. ERs have already been forced to shut down due to uncompensated care. Under the proposed system, illegal immigrants would not only receive ER services, they'd receive full health care services the same as every citizen but without paying any taxes. That's more than 10 million people freeloading the system who've never paid a dime of taxes and never will, despite being capable of and holding a job.​

One way to alleviate the second problem might be to reform our tax structure with the proposed fair tax, which would replace all current taxes with a sales tax. A monthly rebate would be provided for those below the poverty level. This would ensure that everyone within the U.S. is paying the same taxes, whether here legally or illegally, and even visitors here would pay it.

But that possibility isn't currently on the table. And my first concern still applies.

Bob November 10, 2012 at 3:23 pm


Dainty

1) I've also heard that with NHS a doctor is only allowed to treat CFS with CBT or GET, and that they risk losing their license if they prescribe any medical treatments for it. I believe that it's essential to medicine that doctors are able to remain autonomous in their practice. That is, they get to decide what's best for their patients and practice accordingly. Once you get the government deciding which treatments doctors are allowed to administer for which conditions, private practice disappears, except for those who can afford to pay ridiculous expense for it. My doctor has stated if this actually happens he'll be forced to opt out of the system entirely, and everyone who sees him will have to pay out of pocket. Many other doctors he knows agrees with him, because they must be able to practice independantly in order to give their patients the level of care required.

Having a national health service might influence the way that doctors are regulated, but I think that this is a matter of regulation, rather than a matter of the NHS. We have doctors who privately treat ME patients, with approaches other than CBT, but they have equally been hounded by the regulators.

Dainty

2) Here in the U.S. we have a massive problem with illegal immigration, primarily from Mexico. Illegal immigrants tend to be below the poverty line, and legitimately need health services but do not pay taxes. Emergency Rooms are put in the tricky position of caring for such people without compensation. This page gives a quick rundown of the issue. ERs have already been forced to shut down due to uncompensated care. Under the proposed system, illegal immigrants would not only receive ER services, they'd receive full health care services the same as every citizen but without paying any taxes. That's more than 10 million people freeloading the system who've never paid a dime of taxes and never will, despite being capable of and holding a job.

The NHS is only supposed to treat European citizens, but no doubt it treats some non-European citizens who reside here.
I can only speak from a UK perspective, but I don't have a problem with some people getting through the net and being treated for free.
For me, this is a personal issue, not a political issue. It's an issue of charity. I think that such a system leads to a more civilised, caring and compassionate community.
And it's up to the government to deal with immigration issues, not the NHS.
I believe that the fourth largest economy in the world (the UK) can probably afford to treat a small number of people who shouldn't, legally speaking, be treated for free.

But this is a personal perspective, and I know it's not one that everybody would agree with.
So how do we resolve such fundamental differences in our various approaches to life?
It's not possible. So we just have to compromise, and muddle through, sometimes.
No system is perfect, and sometimes it just comes down to personal preference.
I prefer the UK system to the US system.

I'm not trying to hard-sell the NHS. There are major issues with it.
But if we were to set up a poll on this forum, asking UK residents if they would rather the current system, or a private health care system, I would hazard an educated guess that a majority would favour the NHS.
There might be other systems in Europe that work better than the UK and USA systems.

Dainty November 10, 2012 at 3:32 pm


Bob

Having a national health service might influence the way that doctors are regulated, but I think that this is a matter of regulation, rather than a matter of the NHS.

My thought exactly. Once you start regulating how doctors are allowed to respond to what symptoms, then doctors are no longer free to practice medicine according to their own good judgment. That's my concern.

Bob

The NHS is only supposed to treat European citizens, but no doubt it treats some non-European citizens who reside here.
I can only speak from a UK perspective, but I don't have a problem with some people getting through the net and being treated for free.
For me, this is a personal issue, not a political issue. It's an issue of charity. I think that such a system leads to a more civilised, caring and compassionate community.

I don't have a problem with some people being treated for free. The issue is that the system must be able to compensate for that charity. I don't think the system is capable of doing that without taxing the citizens to ridiculous levels, becuase it's not just a few, it's an extremely large group of people. Imagine that just across a U.K. border is a very poor country full of desperate people who know they can get free health care if they can make it across a not-too-well-defended land border. They already come in hoardes for the jobs, and adding free healthcare to the mix would only increase that number considerably.

Again, I personally want to welcome them with open arms, but we're talking about whether or not a sustainable health care system can be set in place that's free to everyone at the point of use. And I do not see how it's ethical to force a country's citizens to pay charity for another entire country's citizens, nor do I see it likely that they would be capable of doing so. Even charities have to draw the line on how much they can afford to offer. This is why ERs are already shutting down – because they offered charity and now must close their doors.

Old Salt November 10, 2012 at 3:40 pm

Someone said, what you do for the least of you, you do for me. Does anyone recall?
The ILLEGALS that I know of, pay the same FEE'S and taxes that many low income LEGAL people pay, while doing the work, no one else will do. It all depends on what side of the fence you happen to be on.

Dainty November 10, 2012 at 3:46 pm


Old Salt

Someone said, what you do for the least of you, you do for me. Does anyone recall?
The ILLEGALS that I know of, pay the same FEE'S and taxes that many low income LEGAL people pay, while doing the work, no one else will do. It all depends on what side of the fence you happen to be on.

Please read my above post, if you haven't already. This isn't about personal desire to help. It's about whether or not a system will work. There are logistics involving a limited amount of money, and we must objectively evaluate how far that money is capable of going.

I'm not sure how it's possible for illegal citizens to pay taxes, seeing as in order to pay them you have to let the government know who you are. I realize fake IDs can do that to some extent, but still.

Again, as I said in my above post, I have nothing personally against illegal immigrants. I realize they're often in a desperate situaiton, and I want to help. But it's important, when you help people, to make sure you don't make your own household destitute in the process.

Bob November 10, 2012 at 4:03 pm


Dainty

I don't have a problem with some people being treated for free. The issue is that the system must be able to compensate for that charity. I don't think the system is capable of doing that without taxing the citizens to ridiculous levels, becuase it's not just a few, it's an extremely large group of people. Imagine that just across a U.K. border is a very poor country full of desperate people who know they can get free health care if they can make it across a not-too-well-defended land border. They already come in hoardes for the jobs, and adding free healthcare to the mix would only increase that number considerably.

Again, I personally want to welcome them with open arms, but we're talking about whether or not a sustainable health care system can be set in place that's free to everyone at the point of use. And I do not see how it's ethical to force a country's citizens to pay charity for another entire country's citizens, nor do I see it likely that they would be capable of doing so. Even charities have to draw the line on how much they can afford to offer. This is why ERs are already shutting down – because they offered charity and now must close their doors.

Yes, I acknowledge that I can only speak from a UK perspective about this specific issue.

Bob November 10, 2012 at 4:08 pm


Dainty

This isn't about personal desire to help. It's about whether or not a system will work. There are logistics involving a limited amount of money, and we must objectively evaluate how far that money is capable of going.

I'm not sure how it's possible for illegal citizens to pay taxes, seeing as in order to pay them you have to let the government know who you are. I realize fake IDs can do that to some extent, but still.

Again, as I said in my above post, I have nothing personally against illegal immigrants. I realize they're often in a desperate situaiton, and I want to help. But it's important, when you help people, to make sure you don't make your own household destitute in the process.

I think you raise valid questions, but I don't believe that this is really a health care issue.
It seems to me more of an immigration issue.
It could also be considered a taxation issue, and a distribution of income issue, and a minimum wage issue, etc. etc. etc.

Dainty November 10, 2012 at 4:27 pm


Bob

I think you raise valid questions, but I don't believe that this is really a health care issue.
It seems to me more of an immigration issue.
It could also be considered a taxation issue, and a distribution of income issue, and a minimum wage issue, etc. etc. etc.

Anytime you implement a new system that interconnects with lots of other systems, there's going to be overlap, because one system's problems can interfere with or even completely disable another system. That's what I'm pointing out here. If our immigration issues were resolved, or taxation system changed to the fair tax, then perhaps we might be financially ready for this system. But since they are not, impelementing a system where you don't have the tax funds to maintain it just doesn't sound smart.

This thread, to my understanding, is about how the election results might change things for those with ME/CFS. The idea is that we might get more free healthcare. I'm pointing out things that might interfere with that happening, or how it could even change things for the worse so that we lose what care we're currently receiving, or it is compromised. Unfortunately the issues surrounding it do get very involved in lots of other things, but that's politics for ya. :p

alex3619 November 10, 2012 at 10:14 pm


Dainty

I've heard that's how it works. However I personally have two major concerns with such a system here in the U.S.:

1) I've also heard that with NHS a doctor is only allowed to treat CFS with CBT or GET, and that they risk losing their license if they prescribe any medical treatments for it. I believe that it's essential to medicine that doctors are able to remain autonomous in their practice. That is, they get to decide what's best for their patients and practice accordingly. Once you get the government deciding which treatments doctors are allowed to administer for which conditions, private practice disappears, except for those who can afford to pay ridiculous expense for it. My doctor has stated if this actually happens he'll be forced to opt out of the system entirely, and everyone who sees him will have to pay out of pocket. Many other doctors he knows agrees with him, because they must be able to practice independantly in order to give their patients the level of care required.​
2) Here in the U.S. we have a massive problem with illegal immigration, primarily from Mexico. Illegal immigrants tend to be below the poverty line, and legitimately need health services but do not pay taxes. Emergency Rooms are put in the tricky position of caring for such people without compensation. This page gives a quick rundown of the issue. ERs have already been forced to shut down due to uncompensated care. Under the proposed system, illegal immigrants would not only receive ER services, they'd receive full health care services the same as every citizen but without paying any taxes. That's more than 10 million people freeloading the system who've never paid a dime of taxes and never will, despite being capable of and holding a job.​

One way to alleviate the second problem might be to reform our tax structure with the proposed fair tax, which would replace all current taxes with a sales tax. A monthly rebate would be provided for those below the poverty level. This would ensure that everyone within the U.S. is paying the same taxes, whether here legally or illegally, and even visitors here would pay it.

But that possibility isn't currently on the table. And my first concern still applies.

Hi Dainty, I mostly agree with you. However there is something that is missing in your argument. Evidence based management of medicine is being wholesale adopted by insurance cariers. Not everyone yet, and not completely, but in time, all other things being equal, every person covered by insurance would only be able to get CBT/GET and may be required to do so or lose their insurance. I can see this happening if other factors did not oppose it. Evidence Based Management of medicine is a creeping tide that very few will be able to avoid if its allowed to go unchecked. Even now how many do we know who were denied treatment by insurance carriers? Expect that to get worse.

Making the tax base fairer is a huge issue. An irregular work force includes not just people from other countries who are working illegally but the black market including criminals. A fair tax based on sales would impose a tax on criminals whereas for now they get away with little tax. Something like has been adopted in many countries. Its not enough by itself but its still something that can be done.

Essentially its an expansion and simplification of a sales tax, if I understand what you are saying correctly. Over here and New Zealand, and the UK, and probably other countries its called a Goods and Services Tax. Here we did not get rid of income tax in part for the reason that Fair Tax has been criticized – it is the middle class who disproportionately pay tax under this system. The rich would pay very little tax. There are ways to fix this aside from retaining income tax, but each way has its own problems. What has tended to happen though is two things. One, income tax can be lowered. Two, many other taxes are eliminated. The reduction in administrative and government overhead from getting rid of many other taxes is alone justification for this.

Bye, Alex

valentinelynx November 10, 2012 at 10:31 pm


penny

To me (with only my ME sufferer hat on) the result of this election means that I may in the not so distant future have the option of not having to pour every ounce of my energy and functionality into working JUST so I can keep my insurance coverage. Maybe, someday, I can stop pushing, stop risking making myself more and more sick every day for fear of what will happen if I loose my insurance coverage and fall into one of our giant societal cracks. It means that if I am unable to continue to work, my husband and I may be able to purchase private insurance despite my 'pre-existing' condition.

This, for me, is HUGE.

You can already buy insurance through the Pre-Existing Condition Insurance Plan that was one of the first elements of the Affordable Care Act to go into effect. I signed myself and my husband up immediately. That was over a year ago. If you currently have no insurance, have been denied insurance, or only offered a ridiculously high premium, you can get on the PCIP insurance. Premiums are set by age alone. Mine is $240 per month (I'm 50). My husband's is $330 (he's 64).

That this option is so poorly known is terrible. Go to http://www.pcip.gov to find out how to sign up. It is incredibly easy. You just need a letter of rejection from an insurance company.

MishMash November 10, 2012 at 10:44 pm


nanonug

…In the US, the elephant in the room that I see no one addressing is the cost of healthcare. This cost is not driven by insurance companies, it is driven by healthcare providers. AMA and friends create an environment of artificial scarcity and that, together with 20-year patents and FDA protectionism, results in a captive market. This has to end. One first easy step would be allowing the legal re-importation of drugs. This would result in lower prices for Americans and, incidentally, higher prices for the rest of the world. As things stand right now, Americans are subsidizing other countries healthcare systems.

Truth be told, Nanonug, you have just told the truth. All your points avoid the usual spin and point out reality. There is a uncuttable Gordian knot in your argument though. The big pharma companies need the "blockbuster drugs" to finance the huge costs of bringing a drug to market. For example, all of these monoclonal antibodies (like Rituximab) were developed by US companies at great expense. But the companies claim they can only recoup these costs by overcharging US patients. European governments cut deals for discounted drugs like Rituximab. So they lose money in places like UK, the EU, etc.

What is the incentive to develop new drugs if it is not huge profits? (I'm not for huge profits, but just wondering what the alternative is.)

nanonug November 10, 2012 at 11:23 pm


MishMash

What is the incentive to develop new drugs if it is not huge profits?

Many new treatments are actually developed by research institutions associated with Universities and with Government grant money. Then, these treatments are patented and licensed or sold to pharmaceutical companies. In turn, these companies setup billion dollar trials to fulfill the requirements set forth by Congress/the FDA for approval. If approved, a couple billion more are spent in marketing. This means that most of what is spent is either of a regulatory nature or marketing bullshit – the development per se is rather affordable. Maybe it is time for the regulators to come up with a better/cheaper criteria for approval. One possibility would be to just require "proof" that the treatment is not harmful instead of requiring "proof" of effectiveness. The former is much cheaper than the latter.

Old Salt November 11, 2012 at 1:02 am


Dainty

The problem is, there's no such thing as "free" healthcare. Someone, somewhere, has to pay the bills.

It appears to me that the affordable health care act will force health insurance companies to lose more money. Like any business, they have to make money in order to remain in existence. So if they're forced to lose money in this way, the result will be that they need to start charging more in order to stay ahead. They might raise the rates for everyone, or they might inflate the prices of prescription drugs and proceedures to even more ridiculous levels than they are today (there's no resource reason an MRI should cost more than $5, for example) or perhaps increasing the co-pay. Whatever the case, people end up paying more – either for the insurance to begin with, or if you don't have insurance you're paying more for procedures/drugs out of pocket because the insurance companies have jacked the price up so high.

I've read forums where massage therapists are telling each other how to get away with charging insurance companies a fortune. So insurance companies are forced to pay out easily 3 times the reasonable amount. They have to make up that difference somehow. They do it by charging more in other areas, just so they don't have to close shop.

It's a warped system, but forcing them to "help" us more will only warp the system further, from what I can see.

Regarding Medicaid. Do you know how much doctors get paid when you visit them with this "free" system? I found out that for an hour long appointment medicaid would only pay $50 to my doctor. Average cost of medical school is $140,000. No wonder so many doctors are refusing medicaid! They need to put food on the table, too. Medicaid recently asked me to find a new primary doctor on their system, and gave me a list to choose from. When my caregiver called several dozen on my behalf, every single one of them said they were not taking any new medicaid patients. I can't say I blame them. But I have to wonder….how does putting more people on medicaid help anything medically? I once shared an ER room with a woman experiencing very severe symptoms (was shockingly jaundiced, projectile vomitting, severe abdominal pain) and they sent her home with no help because nothing showed up on the CT scan. They of course stressed that she should follow up with her primary care doc, but as she told me she had not yet been able to find a doctor willing to take medicaid so the only help she could ever get was in the ER, where they only ran tests and bounced her out again.

That doesn't sound like the kind of care that would be helpful to someone with ME/CFS.

Issues in the medical system are complex, but I believe it's important when considering political changes to view all the ramifications on everyone and not just what would be easiest on us. Medicaid gave me the option of asking my doctor to get on their system. I couldn't do it. My doctor has bent over backwards to cut costs for his patients. He practices in a dinky run down shared office complex and works as his own secretary, and somehow manages to squeak by charging only $60 for subsequent visits. His reputation in the field is such that that every doctor of that specialty I've emailed accross the country recognizes him by name. He could easily charge three times that much as many doctors do, but instead he chooses to live by more humble means so that the average person can afford to see him.

If he can do that, I can choose to make sacrifices to be able to scrape together $60 to visit him once a month. And to top it all off, this is the doctor that's bringing about all this progress that I've been writing about. He's the one getting me well.

What would happen if he was forced to give out his services for free to certain patients? He'd have to raise the price for regular patients, right? And then those regular patients wouldn't be able to afford seeing him unless they got on the "free" list too. You see? It's a vicious cycle.

I understand there's a lot of people without money. But in our desperation lets not forget that doctors need to provide for themselves and their families, too.

I was diagnosed over thirty years ago. Have seen over one hundred doctors. Not one has helped me, at all. The only exception are the so called Naturopaths, to some extent, with supplements.
I never met a poor MD.
So far, MDs are for the emergency room only.

Sasha November 11, 2012 at 4:17 am


alex3619

However there is something that is missing in your argument. Evidence based management of medicine is being wholesale adopted by insurance cariers. Not everyone yet, and not completely, but in time, all other things being equal, every person covered by insurance would only be able to get CBT/GET and may be required to do so or lose their insurance. I can see this happening if other factors did not oppose it. Evidence Based Management of medicine is a creeping tide that very few will be able to avoid if its allowed to go unchecked. Even now how many do we know who were denied treatment by insurance carriers? Expect that to get worse.

Generally speaking, I'm a big fan of the principles of evidence-based medicine, intelligently applied. There's a spectacular graph from the 1990s (I think) showing the cumulative outcomes of randomised controlled trials of a particular drug on (I think) heart disease, arranged by year. It shows the date at which it became statistically clear, from the mounting evidence, that the drug was saving lives. In the graph you can see the evidence mounting and mounting year by year. The calculation of lives lost by not doing that cumulative analysis and therefore not using the drug was, if I remember, in tens of thousands. It was one of the arguments put forward to counteract each heart specialist basing treatment on their judgement, because their personal experience is based on a limited pool of patients, no control condition, and the specialist's own biases. It was a key piece of evidence in the argument for using EBM and, I think, a very persuasive one.

The problem is that EBM is not being intelligently applied to ME. In an ideal world, where evidence was poor or missing, as is the case with ME, research would be done to test treatments and it would be good quality research with appropriate case definition. With ME, the definition of the disease has been broadened to the point of uselessness by lobbyists and medical research has been prevented by the same lobbyists. Trial evidence for treatments is scarce. In that situation, doctors should be free to use their clinical judgement, since the alternative is just to let the patient rot for decades. What we're getting is an idiot's version of EBM. It's a perversion of the original principles and it makes me sad and angry to see it.

I think we're agreeing, Alex – I don't see your argument as anti-EBM, just anti-stupid-EBM.

By the way, I'd like to thank everyone on this thread for keeping it civil. I'd normally avoid a political thread like the plague because it would be full of angry people shouting. Instead we're getting an informative and interesting working-through of issues. Thanks, everyone.

alex3619 November 11, 2012 at 5:07 am

Yes Sasha, my argument is indeed anti-stupid-EBM. I want EBM to focus on science and rational decision making, not accounting and management principles. I too am a fan of the idea of evidence based medicine, just not its current domination by management principles and agendas. Sure medicine has to be managed, but the science can't be thrown out in the process, or otherwise distorted. Bye, Alex

Waverunner November 11, 2012 at 5:14 am


nanonug

Many new treatments are actually developed by research institutions associated with Universities and with Government grant money. Then, these treatments are patented and licensed or sold to pharmaceutical companies. In turn, these companies setup billion dollar trials to fulfill the requirements set forth by Congress/the FDA for approval. If approved, a couple billion more are spent in marketing. This means that most of what is spent is either of a regulatory nature or marketing bullshit – the development per se is rather affordable. Maybe it is time for the regulators to come up with a better/cheaper criteria for approval. One possibility would be to just require "proof" that the treatment is not harmful instead of requiring "proof" of effectiveness. The former is much cheaper than the latter.

True. This is the key problem we face. Proof of effectiveness is responsible for more deaths than anything else in my eyes. In the end it's the patients and doctors who should decide what drugs they take. if you are not able to choose the right drug then go to a doctor or wait for government to do it for you but please leave all the other people alone. Government prevents the development of new drugs and this is the reason why we see so few innovations in drug development. Smart people and business owners are prevented from entering the field because government imposes these gigantic regulatory costs.

When government steps in, things get expensive:

  • Education has never been more expensive than before, although government spends more and more money on it
  • Healthcare has never been more expensive although government spends more and more money on it. As soon as government steps out of healthcare and creates competition between the insurance companies and the pharmaceutical complex, we will see huge drops in cost. The only thing government should do is, to reform the jurisdiction.
  • The financial crisis was based on two government faults. 1) Creating money out of thin air and flooding the market will always lead to bubbles. 2) No bank has the incentive to lend money to a person, who cannot pay back. By making legislation that punished this behavior (Community Reinvestment Act) and giving guarantees through Fannie Mae and Freddy Mac, that these banks will not go bankrupt, the big casino was opened until the bubble burst.

The Austrian School of Economics predicted all this crap but if people continue to think, that they will get another outcome by doing the same thing over and over again, nothing will change. Obama has no recipes for anything. Government spending will not get us out of this crisis and government regulation will not cure CFS.

Bob November 11, 2012 at 9:02 am


Waverunner

When government steps in, things get expensive:

  • Education has never been more expensive than before, although government spends more and more money on it
  • Healthcare has never been more expensive although government spends more and more money on it. As soon as government steps out of healthcare and creates competition between the insurance companies and the pharmaceutical complex, we will see huge drops in cost. The only thing government should do is, to reform the jurisdiction.

Government spending will not get us out of this crisis and government regulation will not cure CFS.

These are ideological positions, aren't they? I'm not sure if these opinions are based on evidence.

I'm not sure if I agree with your assertions, because states schools in the UK cost less to run than private schools, per student.
Education is more expensive now, than in the past, because schools are expected to have higher standards, and better equipment, including computers, books, building standards, heating, etc., than they did in the past.

Health care is more expensive than ever before because of the nature of health care. Healthcare has a higher inflation rate that the rest of the economy because of demographics, and because of ever-increasing technology and medical knowledge.
The NHS is supposed to be one of the most efficient health care systems in the world, which is evidence against your assertions. I'm not saying that the NHS is necessarily the best system in the world, but it is evidence that government-run health care is efficient and inexpensive. With the NHS, there are no pumped up prices. Prices are at cost, except where services are out-sourced. The NHS is a non-profit.

With regards to government spending, that's another ideological position.
Either you are for it, or against it. And there are various arguments in favour and against.
The best arguments are nuanced and recognise the complexity of the issues, the diversity of evidence, the diversity of possible systems, the possibilities, history, and the reality of life for ordinary people.
Some people value many of the things that governments spend money on (e.g. health, education, local government, research, business investment, defence, civil infrastructure, social care, flood defences, law and order, roads, railways, pollution monitoring, refuse collection & disposal, sewage, energy policies, scientific research, medical research, housing, business regulations, etc etc. etc.), and some say that they don't value these things.

Some say that only large-scale government investment will find treatments for CFS/ME.

Some say that government spending and investment will indeed help a country out of recession and avoid depression. It depends on whether you subscribe to Keynesian economics or not.

And some say that better regulation would have avoided the financial collapse.

There are no black and white answers to any of these things, in my opinion.

But if you look at Scandinavian countries (social democratic countries, with larger government spending, government investment in infrastructure/health/education, rule of law, protection for individuals in the law, social equality, social freedom), then I think that it would be difficult for most people to say that these are bad or unattractive places to live.

With countries which have less government spending and less government involvement in people's lives (Mexico, India) (I can't think of any developed countries as examples), you can see how many people get severely hurt by a lack of social/legal/health protection for individuals. Some might argue that the Indian/Mexican (for example) economies are more dynamic than the Scandinavian countries, but the Scandinavian countries have highly evolved economies, and the Scandinavian economies do extremely well, and they have very high living standards, and a high degree of economic equality.

At the end of the day, it's a personal preference, for each of us. But I think it's important to take a sophisticated and nuanced look at all the evidence before we form our opinions.

There is an argument to be had about big government vs small government, but maybe this isn't the right place to have that discussion.

Waverunner November 11, 2012 at 9:47 am


Bob

There is an argument to be had about big government vs small government, but maybe this isn't the right place to have that discussion.

That sums it up pretty good. You take India, Mexico as example for low government intervention. That is ridiculous and shows your ideological standpoint. Take Singapore, Hongkong or South Korea. But as you said, a political discussion will lead to nowhere. Both of us know, that the NHS does nothing to help people with CFS.

Btw. here are some minutes of discussion about the NHS. Daniel Hannan says some very interesting things. For example, the NHS employs over 1.4 million people and most of them are administrators. That would explain why if someone has the choice to choose between an US and an UK hospital, nobody chooses the latter. However, I agree with you that healthcare should be available for severe cases (cancer etc.) but I absolutely disagree on the role of government intervention in drug development.

http://www.youtube.com/watch?v=xx0ktkr9s8I

Bob November 11, 2012 at 10:03 am


Waverunner

That sums it up pretty good. You take India, Mexico as example for low government intervention. That is ridiculous and shows your ideological standpoint. Take Singapore, Hongkong or South Korea. But as you said, a political discussion will lead to nowhere. Both of us know, that the NHS does nothing to help people with CFS.

I did acknowledge that I couldn't think of any developed countries as examples of small government.
We could discuss HongKong. I'm sure that there are positive and negative aspects to living there.
But I think it would be hard to argue that Scandinavian countries are worse places to live than HongKong etc.
I'm not sure that I'd rather live in HongKong than a Scandinavian country, for various reasons, but like I acknowledged earlier, it's all down to personal preference.

I'm not sure if Singapore and South Korea are good examples of small government, because I believe that they invest heavily in education and broadband infrastructure and other infrastructure, etc. I might be wrong, but I thought their public/state education system, and their investment in infrastructure, are some of the reasons given for their economic success.

The NHS does little to help CFS patients, granted, but that's primarily because there are no widely accepted treatments for CFS, (not as far as the UK establishment is concerned, anyway), and because of an unfortunate political monopoly by the psychs.
As soon as there is a widely accepted treatment (e.g. if Rituximab were to be proven a successful treatment), it will be available free to all UK citizens.
We do actually receive medical care, for any CFS-related issues that our doctors are prepared to try to get their heads around, but nothing specific to treat CFS.

There is a lack of choice in the NHS, but that doesn't mean that a private medical system is our preferred option. Choice can be improved, and indeed current policies are designed to give more choice. I value the NHS a great deal, and so does everybody that I know offline (everyone in the UK uses the NHS, even if they have private insurance), but I acknowledge that it needs to be vastly improved. This won't happen easily, because funding is always a political issue.

nanonug November 11, 2012 at 10:04 am


Bob

These are ideological positions, aren't they? I'm not sure if these opinions are based on evidence.

"X" is a scarce resource. All things being equal, if more money is thrown at "X", "X" will experience price inflation. In a free market, new agents would quickly offer "X". However, if "X" is artificially kept scarce by law, this won't happen.

This is Econ 101 and, if you don't mind my saying, common sense.

Bob November 11, 2012 at 10:28 am


nanonug

"X" is a scarce resource. All things being equal, if more money is thrown at "X", "X" will experience price inflation. In a free market, new agents would quickly offer "X". However, if "X" is artificially kept scarce by law, this won't happen.

This is Econ 101 and, if you don't mind my saying, common sense.

I don't have any insight into the intricacies, or details, of the specifics of the US system, so I avoid commenting on the specifics.

Waverunner November 11, 2012 at 12:19 pm


Bob

I don't have any insight into the intricacies, or details, of the specifics of the US system, so I avoid commenting on the specifics.

This has nothing to do with the US system. If government protects big pharma companies, like it does in the US as well as in the UK, small companies are blocked from entering the market. Why? Because, as nanonug already pointed out, government requires proof of effectiveness and not proof of safety. This means that good scientists cannot enter the field because they need ridiculous huge amounts of money, to run clinical trials and get approval. It should be the patients and doctors choice only, if they want to buy a drug or not. There is no need for government to intervene. If insurance companies want proof of effectiveness, that is their right but no-one has the right to prevent scientists from developing drugs and selling them on a free market, as long as they are non addicting and not harmful. I'm allowed to buy battery acid, why am I not allowed to buy medication?

Kina November 11, 2012 at 12:31 pm

I would like to thank all the member's for the civil discussion on this thread. Please note that the topic of the thread is ‘What the Obama/Biden victory means for the ME/CFS community’. Currently the thread has wandered away from that and has meandered into some off-topic material.

Please keep to the topic at hand as we did post a message at the beginning of the thread to avoid discussing off-topic content. If you see where the thread has become off-topic, please don't respond by saying it is off-topic and then continue to discuss the off topic material as this makes more work for the moderation team.

Thank you.

Parismountain November 11, 2012 at 7:41 pm

I'm concerned my Medicare which had been slightly more advantageous for a provider to accept is now on the level of Medicaid and I know how difficult it is to find a good doctor if you're on Medicaid. I'm disappointed another go around and perhaps a wiser solution to health care in general has now ended.

The people have spoken and Obamacare is here to stay.

Time will tell which side was right on this one.

Parismountain November 11, 2012 at 9:43 pm

One more thing, with Romney losing I'll now lose my Medicare Advantage plan. I just got the paperwork last week and Blue Cross has left my market. They won't discuss why but there is a 20% reduction in the Advantage subsidy being removed every year under Obamacare and that has kicked in and I lost my plan.

I was suppose to be able to keep my plan but oh well.

penny November 13, 2012 at 1:14 pm


valentinelynx

You can already buy insurance through the Pre-Existing Condition Insurance Plan that was one of the first elements of the Affordable Care Act to go into effect. I signed myself and my husband up immediately. That was over a year ago. If you currently have no insurance, have been denied insurance, or only offered a ridiculously high premium, you can get on the PCIP insurance. Premiums are set by age alone. Mine is $240 per month (I'm 50). My husband's is $330 (he's 64).

That this option is so poorly known is terrible. Go to http://www.pcip.gov to find out how to sign up. It is incredibly easy. You just need a letter of rejection from an insurance company.

Thanks for the information Valentineelynx! I did not know about this. I'm hoping to be able to keep working (and so remain covered through that) but it makes a huge difference to know that this is an option! Wonderful to feel like there's actually a plan B!

user9876 November 13, 2012 at 1:51 pm


nanonug

"X" is a scarce resource. All things being equal, if more money is thrown at "X", "X" will experience price inflation. In a free market, new agents would quickly offer "X". However, if "X" is artificially kept scarce by law, this won't happen.

This is Econ 101 and, if you don't mind my saying, common sense.

You need to look at switching costs, other opportunities and switching times. For example if the supply of doctors is low then new doctors don't come on line quickly because it takes time (and cost) to train them. There is also the issue of what a bright student decides to do, they could learn medicine or they could go and work in the city or … each presents different competing opportunities.

This is the type of area that governments step in and change the rules for example providing extra funding or tax breaks for a medical school.I seem to remember that Blairs government as well as boosting NHS spending they also increased the number of places in medical schools. We cheated as well by importing trained doctors from the third world.

One big problem is it takes long term planning. Something both government and the private sector are very bad at. From a private industry perspective the way you look at planning can depend on how quickly you need a return on investment. So IT companies need a quick return, the oil and gas industry have longer time scales.

Simple econ 101 analysis often ignores issues of information asymmetries since a lot of market economics fails to take this into account or deals with it using abitrage. Basically information asymmeties makes the maths hard. Hence X can be kept artificially high due to a lack of knowledge about profit opportunities.

user9876 November 13, 2012 at 2:11 pm


Waverunner

l. I'm allowed to buy battery acid, why am I not allowed to buy medication?

The problem is it is hard for most people to assess how good a medicine is. In economics they talk about a market for lemons.Taking the quote from Wikipedia since they explain it quite well

Akerlof's paper uses the market for used cars as an example of the problem of quality uncertainty. A used car is one in which ownership is transferred from one person to another, after a period of use by its first owner and its inevitable wear and tear. There are good used cars ("cherries") and defective used cars ("lemons"), normally as a consequence of several not-always-traceable variables such as the owner's driving style, quality and frequency of maintenance and accident history. Because many important mechanical parts and other elements are hidden from view and not easily accessible for inspection, the buyer of a car does not know beforehand whether it is a cherry or a lemon. So the buyer's best guess for a given car is that the car is of average quality; accordingly, he/she will be willing to pay for it only the price of a car of known average quality. This means that the owner of a carefully maintained, never-abused, good used car will be unable to get a high enough price to make selling that car worthwhile.
Therefore, owners of good cars will not place their cars on the used car market. The withdrawal of good cars reduces the average quality of cars on the market, causing buyers to revise downward their expectations for any given car. This, in turn, motivates the owners of moderately good cars not to sell, and so on. The result is that a market in which there is asymmetric information with respect to quality shows characteristics similar to those described by Gresham's Law: the bad drives out the good (although Gresham's Law applies more specifically to exchange rates, modified analogies can be drawn).[improper synthesis?]

So since most people and doctors find it hard to assess evidence around medicine this risks creating a bad market place hence it is regulated. Regulation of such markets is quite a natural thing. For example early on in trade in england the drapers society was set up by merchants to regulate cloth sales. Some regulation is government based but often it is self regulation within the shadow of the law. If you look at criminal communities then equally you see regulation systems but outside of the shadow of the law. So the point is that where information asymetries exist such as in a drugs market some form of regulation is required but this regulation can take a variety of forms.

Bob November 13, 2012 at 2:40 pm

Another aspect of drug regulation is 'relative' safety.
A drug might be considered relatively 'safe', but only in relation to the harm caused by the illness.
So a drug permitted for a specific illness, might not have been permitted for another illness because of its dangerous side effects.
For example, some cancer drugs have very severe side-effects, but they are permitted because they save lives.
Similar side-effects would not lead to a antidepressant, for example, being given approval.

I used to think that all drugs should be freely available to anyone who wants them, but I'm not sure any more, because of the complexity of the issues.
I think more harm might be done than good, overall.
I think that patients would be bamboozled by drug companies, and end up taking totally inappropriate medications, sometimes with irreversible side-effects, or dangerous/fatal drug/food interactions.

Antibiotics are an example of a drug that it would be dangerous to make freely available, because of resistance issues, but I suppose they could be made an exception, if drugs were made freely available.

A lot of potentially successful anti-depressants have not made it to market, and some have been withdrawn/banned, because they are too effective (i.e. they have a potential for addiction.) Partly because of this, nothing much better than Prozac has been invented since Prozac hit the market, about 30 years ago. As someone who has always been vulnerable to depression, I get annoyed about this, and would like to see the (allegedly addictive) drugs tested on a wider scale, beyond a phase I medical trial. The antidepressant situation seems like a really bad record, for a type of medication. I would have thought that they would have found something substantially more effective than Prozac, with fewer side effects, over the past 3 decades. It shows that we've still got a lot to learn about medicine.

nanonug November 13, 2012 at 2:43 pm


user9876

The problem is it is hard for most people to assess how good a medicine is.

This does not answer @waverunner's question: why is it illegal to freely buy medication? This question does not have an answer in Economics.

Mark November 14, 2012 at 12:53 am

I have a nasty feeling I might be technically breaking my own rule here :eek: , because the following point about economics is not really related to healthcare only, although it's not really about party politics either, and might be a useful point about the issues discussed recently on this thread about the drugs market (a subject which is clearly on topic). Anyway, if anyone thinks it's off-topic please do report it and I'm happy for it to be deleted…Kina will probably do a better job of assessing this one objectively than I can…:D

user9876

The problem is it is hard for most people to assess how good a medicine is. In economics they talk about a market for lemons…

So since most people and doctors find it hard to assess evidence around medicine this risks creating a bad market place hence it is regulated.

..So the point is that where information asymetries exist such as in a drugs market some form of regulation is required but this regulation can take a variety of forms.

It's this point about information asymmetries that has interested me.

If I have it right, it is a response to an earlier post referring to 'economics 101', which was a straightforward argument about how economics (allegedly) work. That argument has an obvious appeal I think, because it sounds like it's just common sense, and similar arguments to that one are often used to justify political standpoints regarding the role of the 'free market'. I guess arguments rather like that are used on all political sides, but I do seem to hear them quite often as simple arguments for 'free market' economics (what I would think of as 'economic liberalism'). But I think there may be a more fundamental question to ask about those arguments, before we even get to issues of 'information asymmetries'.

A friend of mine was doing a PhD in this in relation to social policy, and he explained the basic flaw as lying in the economic concept of 'rational actors'. In all economic models, there have to be a set of assumptions, which seem to most often be assumptions about human behavior. This is basically necessary to turn everything into maths, and hence into relatively simple and measurable conclusions. Some of these assumptions may be valid because they even out; others may miss really important factors.

The assumption which, based on my limited understanding of economics, seems like it may be the single most prevalent problem, is the assumption that individual humans always act 'rationally', and purely on the basis of their own individual (economic) interest. They always take the best economic option for them, selfishly – or so it's assumed in some models (though not generally stated explicitly). Thus, for example, if a shop opens up which is cheaper for the same goods, everyone will go to that shop. Or if there are better wages in the next town, then people will move there.

However, this assumption is clearly not borne out by our experience. Although it's perhaps meant only as an approximation (and when put in its proper context, it's a fair enough argument), and although the force that these financial factors create is real and lies in the direction that the theories suggest, we actually know that in real life we often carry on shopping at the more expensive shop through inertia, through habit, because it's on a convenient or pleasant route, because we like the shopkeeper or have built an emotional attachment or routine around going there, or because we just haven't thought much about it. We stay in the town where we live because our friends are there, and we feel attached to the place, we want to stay there, and that's more important to us than the money we might be able to make somewhere. So in fact our economic decisions, as individuals, are actually very 'sub-optimal' indeed. They aren't "rational" decisions, and they aren't just dictated by the financial factors, but also (and perhaps actually more powerfully) by human factors.

Of course the argument might then run that, on average, these factors will tend to work in this way, and that seems like it should be true. However, it's important to note that these forces will always act only as a tendency, rather than a rule – they will always work significantly less than 100% and therefore they don't average out to 100% – and significantly there are also going to be 'human' factors which are also systematic and consistent which are pulling in other directions. Sometimes those other factors may even be more powerful than the financial ones.

Thus the market forces are indeed a factor in the direction that their theory suggests, but they are far from the whole picture, and some of the arguments that are advanced about economics are really only one part of the story. I do think it gets potentially quite dangerous when it's assumed that such arguments are the whole truth about a particular question, and they are simply true and obvious, because I really don't think they're as accurate as many people tend to assume. And indeed, if you assume or demand that they are the whole story, you can sometimes end up effectively (and unintentionally) going to war against those human factors, and putting numbers above people.

As regards the healthcare market (to try to at least pretend to stay on topic :) ) I think the factor that is dominant for many people – and which has certainly been almost universally accepted in th UK ever since the NHS was created after the Second World War – is the universal benefit we experience here from the security of having an excellent (though of course never perfect) safety net; a guarantee that if (or rather when) we get sick or disabled, we will be protected and cared for rather than exposed to the 'free market' and potentially discarded as 'uneconomic units'.

Whether it fits into an idealised economic model or not, there are very, very few people in the UK who would now wish to lose the benefits of what is, in effect, a national insurance scheme that provides at least a basic level (and actually a very good level) of healthcare for everyone. Even amongst most of our free marketeers, many of whom would wish to see more of a role for privatisation of the health system and some form of expansion of private healthcare insurance, I don't think I've ever heard anyone argue for a completely free market in terms of the abolition of this 'national healthcare insurance scheme', and certainly no serious politician in the UK would suggest abolishing the NHS.

So, just as an impression from the outside, the mandatory element of Obamacare sounds to me like a somewhat business-oriented and free-market-friendly implementation of something that all of us over here take for granted: a basic level of societal healthcare protection 'from cradle to grave'. I do get the impression that, in the end, compromise was necessary and it didn't go as far as it was originally intended to go, and perhaps those compromises may be its undoing. But I suspect there's a very real chance that in time it may be seen as an absolute watershed in American politics, because that safety net is the sort of thing that, once you've come to appreciate its value, you are always grateful for. I really hope it works out that way.

Anyway, the general economic point, that the free market isn't the only reality of economics and isn't the only important factor in politics, is really just an observation that is hopefully of interest…if it is indeed off-topic, my apologies…

user9876 November 14, 2012 at 2:09 am


Mark

A friend of mine was doing a PhD in this in relation to social policy, and he explained the basic flaw as lying in the economic concept of 'rational actors'. In all economic models, there have to be a set of assumptions, which seem to most often be assumptions about human behavior. This is basically necessary to turn everything into maths, and hence into relatively simple and measurable conclusions. Some of these assumptions may be valid because they even out; others may miss really important factors.

I believe that economists sometimes talk of semi rational actors although I've never looked at this work. The other thing is they try to monitize other factors, for example, social consquences to them of performing a task. In thinking about an agent they will also talk of different behaviours (such as people being risk seeking or risk adverse) leading to different results.

Mark

The assumption which, based on my limited understanding of economics, seems like it may be the single most prevalent problem, is the assumption that individual humans always act 'rationally', and purely on the basis of their own individual (economic) interest. They always take the best economic option for them, selfishly – or so it's assumed in some models (though not generally stated explicitly). Thus, for example, if a shop opens up which is cheaper for the same goods, everyone will go to that shop. Or if there are better wages in the next town, then people will move there.

However, this assumption is clearly not borne out by our experience. Although it's perhaps meant only as an approximation (and when put in its proper context, it's a fair enough argument), and although the force that these financial factors create is real and lies in the direction that the theories suggest, we actually know that in real life we often carry on shopping at the more expensive shop through inertia, through habit, because it's on a convenient or pleasant route, because we like the shopkeeper or have built an emotional attachment or routine around going there, or because we just haven't thought much about it. We stay in the town where we live because our friends are there, and we feel attached to the place, we want to stay there, and that's more important to us than the money we might be able to make somewhere. So in fact our economic decisions, as individuals, are actually very 'sub-optimal' indeed. They aren't "rational" decisions, and they aren't just dictated by the financial factors, but also (and perhaps actually more powerfully) by human factors.

There are often issues around the accuracy of the model. For example one economic model I know looks at migration that is whether to move to another town. They include switching costs (both to move and to return) as well as uncertainty around the wages in the new town. So that model allows you to take acount of some of these different factors but it quickly gets complex.

With the going back to a shop example there is the idea of a single transaction vs a repeated set of transactions. Often expressed in terms of game theory where there is a single or repeated game. They lead to different results.

Hence the model matters but they are tools to help you think about the decision space rather than predictions of reality. One of the problems I've had described to me was that the models can end up over simplifying a situation to keep the maths tractable. This can lead to situations where those using the models forget about these assumptions and missing elements.

Mark

Thus the market forces are indeed a factor in the direction that their theory suggests, but they are far from the whole picture, and some of the arguments that are advanced about economics are really only one part of the story. I do think it gets potentially quite dangerous when it's assumed that such arguments are the whole truth about a particular question, and they are simply true and obvious, because I really don't think they're as accurate as many people tend to assume. And indeed, if you assume or demand that they are the whole story, you can sometimes end up effectively (and unintentionally) going to war against those human factors, and putting numbers above people.

Understanding the models is important. One of the efforts of a lot of (good) regulation is to try to get markets to work by removing things like information asymmetries. So for example making insider trading illegal or ensuring companies publish accurate accounts so that the stocks can be traded fairly.

Mark

As regards the healthcare market (to try to at least pretend to stay on topic :) )

I expect that there are a number of public goods arguments around the health market. That is the need for the country to maintain a healthy workforce hence a shared product. This would be a different way of looking at the market place. Different economic models can help us understand the way different systems run and some of the ways they go wrong. Politics should then allow us to choose which system from all the different trade offs and assumptions that we prefer.

Waverunner November 14, 2012 at 3:05 am


user9876

The problem is it is hard for most people to assess how good a medicine is. In economics they talk about a market for lemons.Taking the quote from Wikipedia since they explain it quite well

Adverse Selection is a problem of principal-agent-theory but not in this case in the real world. I understand that buying new drugs can be a risk, but the answer is very simple. If you are not sure about a new drug, don't buy it! If a doctor is not sure about a drug, he shouldn't prescribe it! However, this doesn't give anyone the right, to make drugs illegal for other persons.

Pharma companies can use signalling in order to lower the doubts. The market will come up with an efficient solution to show if their drugs are safe or not. It is in their best interest to show that their drugs are safe. How is it, that costs drop everywhere for everything except drugs, food and commodities (which suffer from inflated currencies)? The reason is, that companies come up with more efficient ways to produce things. Is this possible in the pharma market? No it isn't. Why? Because the FDA imposes expensive regulation, that makes it impossible to lower the cost of drugs. As long as you are required to test drugs through gigantic trials and inhibit competition, the price for drugs will not drop and the variety will be low.

So who will buy drugs in a free market? Either the person who is most intelligent or very foolish or the person who is is most ill and where the illness makes it worth to take a risk because no other help is available. In either case, it's the choice of a free human being! Everyone has the right to talk that person out of his/her choice but making it illegal to sell drugs without FDA approval and prescription leads exactly to the bad market, we have today.

nanonug November 14, 2012 at 7:08 am


user9876

That is the need for the country to maintain a healthy workforce hence a shared product.

This kind of argument ("for the good of the nation") led in Europe to some very nasty ideologies both on the left and on the right that ended with millions of people dead.

user9876

Different economic models can help us understand the way different systems run and some of the ways they go wrong. Politics should then allow us to choose which system from all the different trade offs and assumptions that we prefer.

I would never think of using the dismal science (Economics) as a way to choose a political system.

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