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

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… add one }

  • Mark November 9, 2012, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 5:02 pm

    WELCOME BACK, CORT! We've missed you!

  • Dreambirdie November 9, 2012, 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. 😮

    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, 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, 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 😮

  • Lou November 9, 2012, 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, 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, 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, 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, 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, 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. 😮

    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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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, 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.