Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I have not posted much in a while, just some simple drive-by-posting. This is a great group and I enjoy being a part of it. You are all a blessing to me. Thanks for your prayers, support, and encouragement.
Things are still gone fairly well for me. I have all the same symptoms, but not a severe. I did have a rough three-day weekend, but hope that it was only a quickly passing issue.
Spring is in full bloom here in North Georgia and the days are hot already. It sure makes me want to cut grass and work in the yard. But the boss will not let me because of my breathing. She is right, of course! I told her, "what she don't know won't hurt her!" She said, "what she don't know will hurt me when she finds out!" She Won!
I have been working on some financial matters for the last few days. It is amazing how fast medical bills can grow. Over the last twenty-four months, my hospital and doctor bills have totaled $361,775.12 (not including medications). That averages out to $15,074 per month. I read that Myasthenia Gravis is one of the most costly neurological diseases to treat and I believe it.
Things are still gone fairly well for me. I have all the same symptoms, but not a severe. I did have a rough three-day weekend, but hope that it was only a quickly passing issue.
Spring is in full bloom here in North Georgia and the days are hot already. It sure makes me want to cut grass and work in the yard. But the boss will not let me because of my breathing. She is right, of course! I told her, "what she don't know won't hurt her!" She said, "what she don't know will hurt me when she finds out!" She Won!
I have been working on some financial matters for the last few days. It is amazing how fast medical bills can grow. Over the last twenty-four months, my hospital and doctor bills have totaled $361,775.12 (not including medications). That averages out to $15,074 per month. I read that Myasthenia Gravis is one of the most costly neurological diseases to treat and I believe it.
Correct me(anyone correct me) if I am wrong but in the UK you all are paying a lot of tax to make this stuff run. Along with national insurance fees(12 to 15 percent or if unemployed a mandated work schedule can happen if able), VAT(which we do not have), you pay income tax to at least two levels of govt(we only pay two), very high fuel tax(which we do not have very high), AND in order to be completely covered for all sorts of health stuff, you have to pay one to two insurance companies monies? What else do you pay for? Disability/unemployment insurance?
Whereas here in the US, if working, we pay income tax and to state and FED, state sales tax(no VAT), which both provide medicaid for uninsured, poor and/or emergency only(with guidelines). We pay for medicare, social security, state disability, and we pay the insurance companies to be covered(if we choose to do so) for health and treatment coverage subject to plan or of course we currently have the option, (and some have less to no options) to do some or none of the above depending on work status. Risk notwithstanding.
The Supreme Court here is currently deciding the future here, knowing that less than half of the people here want to pay for all of this and an additional tax for universal healthcare, however that plays out.
Meanwhile, the population grows, and inflation grows(due to currency backed by nothing being devalued), national and state debt increases, while our wages do not increase to compensate for the tax increases and adjustments and the vicious cycles get worse over time with these type of plans put into place. Leading to worse standard of living for the common man. Short term, anything can work, and THEY(in most cases) kick the can down the road for the next generations to deal with.
There has to be other ways...(sigh)
TJ
Your quick update sure got hijacked. If we could figure out the health care mess on this board, it would be wonderful, but I thnk we have enough to just try and figure out the MG mess.
b.
In answer to your question, about four pages ago, I am totally happy with my health care. I have been diagnosed in a very short time. I have finally found a Neuro that actually listens to me, so all is good. Only reason I want to go to US would be because you have the bigger population therefore more people with MG and more docs who seem to specialize in MG. Here we are spread out very thinly.
This has certainly become an interesting topic and one that concerns all of us.
Marvin--ICU really does add significantly to the cost of treatments. I have stayed out of ICU so far and hope to continue to avoid it.
Here is just some more information for the "grist-mill."
Insurance Costs
I have had private health insurance for years since the churches I pastored did not provide group insurance. In 2009 my health insurance rate was about $350.00 per month for me. My wife has a separate policy. This year my rate is $737.00 per month for me. I really can't complain because of how much it has paid on my health care. But still, that is a lot of money out-of-pocket per month for anyone.
I have a 70/30 policy with a $3,000 deductible, plus $2,000 co-pay deductible, plus $3,000 out-of-network deductible. I reached my full deductible by mid-February this year.
The increases in cost were across-the-board for the policy type and age group changes. I wonder how much uncertainty about the United State's health care future is driving the increases?
Medicare verses Private Insurance
In July 2012, I will qualify for Medicare because I have been on disability for two years. I have a lot of research and evaluation to do before then to see if I should continue with my private insurance or go with Medicare. Insurance cost will be a major factor, but so will the availability of treatment under Medicare. If I do Medicare I will buy a supplemental policy. I have time before I decide.
About the Costs of Treatments
IVIG costs about $15,000 per infusion for me. Dosage is based on my size. The larger you are, the more it costs. IVIG was ineffective on me and gave me the aseptic meningitis headache. I will not have IVIG again.
Plasma Exchange (PLEX) costs about $5,000 per treatment on outpatient basis. Time on machine and amount of album are determined by size also. My neurologist is at Vanderbilt in Nashville, TN. I live just outside Chattanooga, TN about 2 1/2 hours away. After several in-hospital exchanges, we have been able to arrange outpatient exchanges at a local Medical Center. This cuts down on costs and I get to sleep in my own bed at night. Five days of PLEX straight seems to be more effective for me than anything else.
Cytoxan costs about $1,900 per infusion. This by far was the easiest treatment for me. We are still evaluating its effectiveness.
Medications cost about $200 per month for me.
Longevity and Treatments
We must also consider that MG is not the "killer" it once was. We live longer, but those with severe cases require expensive treatments to stay alive.
There are four conditions one may find themselves in with MG. Remission--this is the goal for all of us. Stable--with maintenance treatments. Refractory--seeking to stop the progression of MG and become stable. Crisis--MG has become immediately life threatening. The cost of MG treatment depends on your current condition.
The longer we live, the more MG will cost (not just money).
--Kerry
PS: I don't mind the hijack.
You do have some odd ideas. Standard rate of income tax is 20%. The commencement level is sufficiently high that quite a lot of people dont pay at all. For the top 7% of earners that goes up to 40% on marginal income roughly above 4 times average. There is only one level of goverment to pay income tax to so only one income tax. National insurance is not paid on total income. It is paid only on qualifying income which is some low amount. I dont know what that is since I dont pay it anymore (done my qualifying years). Its trivial compared to income tax and belive me I pay that. There is no mandated work schedule of any type and the unemployed pay no national insurance. There are no additional disability or unemployment payments since it all comes out of the national insurance. VAT is our equivqalent of your sales tax. The one thing you have correct is the very high fuel tax compared to the USA. Not high enough sadly as we are still contributing to global warming at a destructive level (a little over half as much as the US per capita). The percentage total tax take in the UK is about the same as a percentage of gross national product taken in tax as in the USA which puts it above Germany and Japan but below Sweden and Holland so it about in the middle for industialized countries. We pay less on the military and the difference is taken up by the NHS.
However, money is not the driver in this. It is a belief in what what constitues basic rights in a society. In Europe we extend the concept of basic rights to cover healthcare and if some of us have to pay extra taxes, so be it. People here would no more deny the sick medical treatment than they would deny children an education. Its just not civilized.
Nobody pays for two insurance policies on top of the NHS. If you want one you chose the company that meets your requirements. I chose to have medical insurance which is quite unusal for someone not in full time employment and definately comes into the luxary rather than necessity purchase class. The yearly charges for cover for both myself and my wife works out to about $3200 with no part payments. The basic market wont bare too much more becase of competeition from the NHS. Things are just cheaper anyway, for example IVIG is costed in the internal auditing (their own accounting and not a charge to be passed to a patient) in the NHS at the equivalent of $4100 which is less than in the USA but this is partly because blood is given free and blood products correspondingly less expensive.
One of the sad things about MG is that they don't want my blood anymore - cant even give it away. I suppose they are concerned that the antibodies might have an effect on the person its given to. You would have thought it would have been okay for blood product use since its all seperated into bits but I guess the system wont allow it.
Gwyn
I would like to add a comment - what does health care have to do with where you work, or don't?
My sister-in-law has been without health insurance because she is a nanny and her employer does not provide insurance. And please don't say she could do something other than being a nanny. She went to community college and earned an associate's degree. It didn't matter, we are in a recession and there were no jobs for her.
No one should have to live in fear of being sick. Access to health care should not be linked to your employment.
Sully
I am an odd fellow.
I was told that there is mandated work for the unemployed and insured, if they are able to work but cannot find employment. I don't really know what that means. Apparently that is not the case. My other confusion with at least two taxes is council tax, Her majesty's revenue and customs tax(that is three). I wasn't aware of the guidelines of NHS, but that will likely continue to change. Something will have to. The money has to come from somewhere. I think the VAT tax is higher than our current sales tax. I think I am just curious how it all works more than anything else. I checked into (so called) rankings of healthcare systems in the world, and neither the US or UK was on the top ten list. It seems we are both in the mid teens. Currency is valued differently in both places for goods of course. Debt continues to grow in both the US and UK due to the running programs like NHS, most certainly.
No matter how it is, all could not be too great in the UK, like pretty much everywhere in the world right now due to global depression: "Due to the Government's significant budget deficit, which must be financed by borrowing, the national debt is increasing by approximately 121 billion per annum, or around 2.3 billion each week"
http://en.wikipedia.org/wiki/United_Kingdom_national_debt
Something has to give and things are going to happen like a dam bursting from too much water. After necessities, better invest in gold and silver related assets to preserve any thing we can, if possible. I would say.
Again, I am an odd fellow. Probably still don't have this right.
TJ
TJ, your take on health insurance and universal coverage are way off the mark. Your comments reek of those coming from the right and from libertarians. Their twenty-second soundbites are paying off all across America as we move into a complex but vitally important phase where all Americans are protected by health insurance. Where are you getting your information?
As a student and advocate of single-payor models for more than 40 years, and as a finance guy for nearly as long, I can tell you the level of misinformation in American society is unbelievable and, on the global scene, extremely embarrassing. One day, I'd like to write a small treatise on single-payor plans. While not as easy to digest as a conservative's 20 second soundbite on Fox News, if people will take a few minutes to try to understand how such a universal model works, they'd be stunned to find how much money it would SAVE in insurance coverage. Yes, SAVE.
Let me explain some of the calculus.
Left wing, right wing or middle of the road, here are the facts:
*The US spends 17percent of it's GDP on healthcare (UK and Canada spend less than 10 percent each).
*The US covers 85 percent of its population with health insurance. The UK and Canada cover 100 percent. And, yes, they cover 100 percent for 10 percent of GDP. We cover 85 percent for 17 percent of GDP. With me so far?
*Administrative costs in the US exceed 13 percent of the healthcare dollar. In the UK and Canada, it's 2 percent. Administrative efficiencies are gained under a single-payor model.
*The cost per unit of service rendered in the US is roughly double that of Canada and the UK: We have no price controls here. It's a demand driven system. With healthcare, like Pk-12 public education, you MUST have price controls. Trust me, we will still have people willing to practice medicine.
*Taxes. Here's an example: My (superb) health insurance plan costs about $15,000 per year. My employer pays about $10,000 of it and I pay about $5,000. Even before accruing any savings in a national single-payor model by wringing out administrative costs and waste, my $15,000 would be swapped from a private pay to a government pay plan. Taxes would go up to reflect the transfer but my employer and I would no longer be paying the $15,000 per year.
*When you put it all together, we can easily save 30 percent of the total healthcare tab while providing the SAME level of service we currently do and to ALL Americans. Most people don't want to believe this. Instead, they listen to the rubbish coming out of Ron, Newt's Rick's and Mitt's mouths, non of whom have any creds in healthcare finance. Anyone who does understand healthcare finance understands that what I've said here is true. I'm not beholden to anyone.
My healthcare, in one more year is paid up for my lifetime, so why should I care?
Because it's the right thing to do.
Because it provides for all Americans and gives them security and stability, even if they lose their job or doesn't keep them locked in a job they hate for fear of losing their coverage.
Because people die from very treatable and preventable illnesses. Do you know that the US is #14 for infant mortality? The greatest society on earth. Give me a break!
Because we pay far too much for what we get. Healthcare in the US is a perverse economic model, one of the few places that when if the number of units demanded goes down, the price per unit of service goes up. You knew this, TJ, right? Do you think Mr. Romney, with all his business savvy knows this? No he doesn't. Stop listening to him and to Orrin Hatch and their ilk! They are not on your side. They sound like nice guys, though, in their 20 second sound bites.
Oh, and do you hate government because they can't do anything right or efficiently? This argument was long ago settled and put to bed. Harvard BUSINESS School - yup, the same place ole Mr. Romney learned his trade - found 25 years ago that government was marginally more efficient than the private sector in toto. Oh, and bureaucratized? Yup, the private sector is more bureaucratized than your government!
What's wrong with Americans, can't they think???!!!
That's because they're too s....d!!! More than 50 percent of Americans don't even know who their congressperson is. How can you trust their judgment on a complex issue? Give me a break.
FIrst of all, let me say that all the presidential candidates(including Obama), except Dr. Ron Paul, are bought and paid for and controlled by banking and corporate influence etc. I do not support them, listen to them, nor pay them any attention. I will ONCE AGAIN be voting for Ron Paul. He won't win, but I will vote for him again. It really was a wasted vote last time because I wrote his name in. I do not watch Fox News or whatever mainstream media news outlet people wish to follow. (CNN etc). Brainwashing occurs left, right and center, giving people the illusion of freedom of choice. Go America!
Now, as for your plan Curt, I wish you luck. and submit it to someone that can make a difference for us. You want to fight the Constitution, Supreme Court is going at it right now. I posted the link.
Your comments about things going up in price is illusion like media and political parties as well. Service price can be determined by demand. No demand for it, it will drop in price. Better service can cost more, but I can still get my hair cut pretty cheap. High demand, better service, higher price. Product price can be determined by availability of related to product or product itself, incl quality etc.
We the people, are in deep stuff...and it is getting rapidly worse as currently our debt is at 100 percent our economy's worth. (15 Trillion) UK is over 1 Trillion.
I mentioned inflation, or dollar devaluation, and an example of cars and how gas was higher now than many years ago. I mentioned gold and silver. Real money shows the difference and reasoning. In the 1960's and prior to 1965, our quarters were made of 90 percent silver and gas was .25 a gallon. The value of the US dollar has been decimated since. We were removed from the gold standard(and silver) by Nixon.
Today, that same silver quarter is worth enough to buy you a gallon of gas(over $4). That's the only thing holding any value. If only there were a way to holding value of other things the same. Write a contract or law stating so, getting it approved by the people, and keeping that contract until it ends, without increasing the total of the contract. Ah, but alas! Things like these don't happen, and they don't happen for a reason. Those reasons are simple, like war...to create debt
As for over half of Americans being stupid Curt? About many things pehaps, but as for the current healthcare plan...
Apparently I fall into that category according to you.
Stupid me I guess.
Print the money!
PEACE
TJ
We are at the brink of a new era and there is hope for a brighter future to eliminate the suffering of so many people because they can't afford health insurance. Let's embrace this opportunity.
Curt,
I can embrace change, but not at the risk of losing more rights. I am glad we can talk about it though. That is something special in itself. I wish for better days ahead for all mankind,
TJ - this is where you're totally off the mark. This isn't about the relatively simple market forces affecting most goods and services like you talk about in Econ 101. In healthcare, if the number of units demanded goes down, the price goes up. This is what makes market-driven healthcare such a conundrum and why others have gone the route of price control. You don't need to believe it but it's fact. Where are you getting your information? Your training in economics? I choose not to talk about stuff in which I am not sufficiently versed. I believe you don't feel the same way.
Simply put - if doctors - and other types of healthcare providers - in America see a fifty percent drop in demand for their services, the price for each unit of their services will go up by fity to one-hundred percent. This happens for a whole bunch of reasons for which there is no room here but that's how it works.
I can't even get a toehold into your discussion because you don't appear to understand the economics of healthcare at the most basic level and, in this case, it's not just about predictions, it's about 50 years of historical data. Sorry, but what you're saying just shows you don't understand. Most folks don't so you're in good company but it is a real pity.
According to you, I am in the "stupid" camp, along with over half of America. I grew up knowing about the rights we've had and continue to lose over the last 50 yrs. Not knowing something doesn't make someone stupid though. One can learn. Although trivial, I would venture to say there are plenty of things that I know, that you do not. That is, if you were to admit it. I would never call you stupid. I have more respect for you than that.
Stupid ideas come from smart people all the time. I sometimes question the reason why it has happened that way, especially when history shows a cycle.