1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

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

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 9, 2012.

  1. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    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.
     
    MishMash, ggingues, Dainty and 2 others like this.
  2. Bob

    Bob

    Messages:
    8,522
    Likes:
    11,368
    South of England
    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.
     
  3. Shell

    Shell Senior Member

    Messages:
    477
    Likes:
    613
    England
    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.
     
    GracieJ, Parismountain and ggingues like this.
  4. Bob

    Bob

    Messages:
    8,522
    Likes:
    11,368
    South of England
    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?
     
    Jenny likes this.
  5. Wayne

    Wayne Senior Member

    Messages:
    2,209
    Likes:
    1,358
    Ashland, Oregon
    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.
     
    MishMash, penny, camas and 1 other person like this.
  6. Wayne

    Wayne Senior Member

    Messages:
    2,209
    Likes:
    1,358
    Ashland, Oregon
    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.
     
    MishMash, Parismountain and Sasha like this.
  7. monobear

    monobear

    Messages:
    28
    Likes:
    9
    California
    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.
     
    Wayne, ggingues, Dainty and 1 other person like this.
  8. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    533
    Washington State
    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.
     
    Waverunner and ggingues like this.
  9. Bob

    Bob

    Messages:
    8,522
    Likes:
    11,368
    South of England
    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.

    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.
     
  10. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    533
    Washington State
    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.

    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.
     
    Waverunner and ggingues like this.
  11. Old Salt

    Old Salt Rowing the boat

    Messages:
    70
    Likes:
    19
    S/W Pa.
    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.
     
  12. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    533
    Washington State
    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.
     
    Nielk and ggingues like this.
  13. Bob

    Bob

    Messages:
    8,522
    Likes:
    11,368
    South of England
    Yes, I acknowledge that I can only speak from a UK perspective about this specific issue.
     
  14. Bob

    Bob

    Messages:
    8,522
    Likes:
    11,368
    South of England
    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.
     
  15. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    533
    Washington State
    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
     
    Bob and ggingues like this.
  16. alex3619

    alex3619 Senior Member

    Messages:
    7,419
    Likes:
    11,832
    Logan, Queensland, Australia
    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
     
    Sasha likes this.
  17. valentinelynx

    valentinelynx Senior Member

    Messages:
    194
    Likes:
    68
    Tucson
    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 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.
     
    penny likes this.
  18. MishMash

    MishMash *****

    Messages:
    445
    Likes:
    479
    Georgia
    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.)
     
    ggingues likes this.
  19. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA
    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.
     
    Waverunner and monobear like this.
  20. Old Salt

    Old Salt Rowing the boat

    Messages:
    70
    Likes:
    19
    S/W Pa.
    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.
     

See more popular forum discussions.

Share This Page