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. Emma

    Emma

    Messages:
    33
    Likes:
    22
    WELCOME BACK, CORT! We've missed you!
     
  2. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,111
    Likes:
    3,364
    N. California
    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.
     
    xchocoholic, Wayne, SOC and 5 others like this.
  3. Emma

    Emma

    Messages:
    33
    Likes:
    22
    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?
     
    Sasha and ahimsa like this.
  4. penny

    penny Senior Member

    Messages:
    286
    Likes:
    134
    Southern California
    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:
     
    Wayne, SOC, ahimsa and 2 others like this.
  5. Lou

    Lou Senior Member

    Messages:
    498
    Likes:
    314
    southeast US

    "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.
     
    penny likes this.
  6. Lou

    Lou Senior Member

    Messages:
    498
    Likes:
    314
    southeast US

    They are potentially getting up to forty million new paying customers. It's all going to work out, my opinion.
     
    Valentijn and penny like this.
  7. penny

    penny Senior Member

    Messages:
    286
    Likes:
    134
    Southern California
    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?
     
    Wayne, Jenny, ahimsa and 2 others like this.
  8. alex3619

    alex3619 Senior Member

    Messages:
    7,487
    Likes:
    11,962
    Logan, Queensland, Australia
    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
     
    ahimsa likes this.
  9. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    533
    Washington State
    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.
     
  10. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    533
    Washington State
    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.
     
    ggingues likes this.
  11. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    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.
     
    dannybex and penny like this.
  12. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,111
    Likes:
    3,364
    N. California
    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.
     
    xrayspex, Lou, Sing and 4 others like this.
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Thanks Emma, its nice to get a blog in :) (now if I can just get that picture off my post :eek:)
     
  14. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    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....
     
    camas likes this.
  15. dannybex

    dannybex Senior Member

    Messages:
    2,244
    Likes:
    562
    Seattle
    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.
     
    Dreambirdie likes this.
  16. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,510
    Likes:
    9,646
    Amersfoort, Netherlands
    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.
     
    Sing and Dreambirdie like this.
  17. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    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....
     
  18. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    533
    Washington State
    And why do you think that only the rich will ever find themselves in need of treatment not covered by this "single payer system"?
     
    ggingues likes this.
  19. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I'm actually not sure which might get hacked; I suppose it could be either one.
     
  20. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    533
    Washington State
    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.
     

See more popular forum discussions.

Share This Page