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Thread: Making lemonade from molehills

  1. #31
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    That's OK, Michelle. From the sound of things, those vasculitis specialist centers really are amazing. And maybe there are such places for some other types of diseases, too, I wouldn't know. Unfortunately, we just don't all have easy access to them, and the best hope of having more of them would be for more people all over the country to have Wegener's, which wouldn't be a good thing, would it?

    Anne

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    Quote Originally Posted by annekat View Post
    I don't know how they make it either, Al, except by being a drain on society, as you say. I am very fortunate that my Wegs symptoms could be dealt with outside of a hospital and therefore within my reach financially. But that's only with some sort of insurance, albeit not good insurance, but what is available to me. Without it, I could not even afford the Cytoxan, let alone the doctors' visits and everything else.
    I realize that this gets close to the dreaded political issue, but, just to put it in blunt terms of money, I would have been kaput if I had had to cough up the cough of my treatment when it was provided. However, it is true that, in the several decades prior to this outlay, I had spent at least that much, in insurance and interest. Now. I could have said (then), "Hey, I'm not sick. Why should I have to spend all this money on insurance that I don't need?" But, no, I just opted to pay the premium the whole time. Others, given the choice, will go the other direction. Is this fair? Does it work? It would be "fair", I believe, if we were, as a society, prepared to say to the gamer of the system once he or she got expensively ill, "Tough. You made your choice." But we can't do it. Nor should we be put into that position. Therefore, that solution does not, and can not work. Indeed, the would-be cheater should not be allowed to be put into that position either. The fact is, no one in a society benefits if a person is incapacitated, except those who feed off his or her estate. It is to the great benefit of everyone else that said party remain a productive member of society, not a drain on its resources. So we all pay; one way or another, we all pay. This is not about politics; this is about reality.

    Al

  3. #33
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    Quote Originally Posted by Al View Post
    So we all pay; one way or another, we all pay. This is not about politics; this is about reality.Al
    Oooooh man, and I was having such a good day...but, you're right, we all pay a price, and sometimes it covers more than we need or want...and some don't...the politics are varied and replete with degrees of human competence...the reality is we're in a fight for our lives and although the world at large may benefit from some of our discussions the fact remains that we/I will do what's necessary to deal with this disease. Selfish, yes...aware, yes...determined, moreso than I've ever been...nite all!!!!!

  4. #34
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    Quote Originally Posted by Dirty Don View Post
    Oooooh man, and I was having such a good day...but, you're right, we all pay a price, and sometimes it covers more than we need or want...and some don't...the politics are varied and replete with degrees of human competence...the reality is we're in a fight for our lives and although the world at large may benefit from some of our discussions the fact remains that we/I will do what's necessary to deal with this disease. Selfish, yes...aware, yes...determined, moreso than I've ever been...nite all!!!!!
    Good, Don. Good.

    Al

  5. #35
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    Two stories:
    A friend of mine had a minor heart attack but lives way out in the boonies. She received medical care locally (for free) but needed to get to a major medical center for proper care. Both she and her partner (another woman-- gasp!) were flown by helicopter (for free). She received excellent care (for free), and when it was time to go home she and her partner were provided return travel (for free).

    Another friend of mine-- who also lives way out in the boonies-- lives far below the poverty line. While working in the yard she had an accident and chopped off a good portion of the tip of her finger. She couldn't afford to travel to any sort of clinic, much less a hospital, and couldn't afford the fees if she made the trip. She provided basic first aid for herself, but the wound became infected. Finally, she was forced to make the trip and get medical care. She was charged $750 for the visit and antibiotics. Even though she has severe financial hardship the facility would not lower or dismiss her bill (so much for the "poor people get care for free" myth). She arranged a payment plan with them for the full amount and is paying it off in very small amounts as she can.

    Both are Australians. The first lives in Australia, the second lives in the US.

  6. #36
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    Thanks for the two stories, Sangye. I think a lot depends on where you live in the U.S. In my town, there are two good hospitals. One is a non-profit hospital affiliated with a Catholic foundation. I know of poor people who have gotten free care there, some for expensive things like knee and back surgeries. The other is a for-profit hospital which does have a financial assistance program, but it requires that you have applied for all the various forms of public assistance before turning in your application. I don't know what happens in big cities, and out in the boonies it would indeed be difficult, especially with difficulty in traveling. I think sometimes people are cared for and the bill just never gets paid, and is eventually forgiven or the person files bankruptcy. In any case, it shouldn't be that dependent on luck, location, charity or the ability to pay for insurance or for the care itself. It also bothers me that insurance is job related and if the job goes out the window, so does the insurance, even if the person is in the middle of a crucial course of treatment.

    Anne

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    Before I had insurance (long before Wegs) I had to get medical care a few times. They never reduced or dismissed the charges, including when I was a student and one doctor visit charged me $900 for a quick office visit and chest x-ray. I had to pay it all back. When I went to Mayo AZ briefly, they were out of my insurance provider's network. The insurance only paid part. I had been unable to work for a year at that point. Mayo gave me a charitable discharge for the remaining fees incurred during my first set of appointments. However, they made it very clear that it would not be offered again. They weren't very polite about it, actually.

    I had to continue going to Mayo for the next 1.5 years-- literally my life depended on it. Every time I went I bargained with the doctor about which test I could do at a covered lab and which we could omit altogether. It was sickening. I was in horrible shape-- still on oxygen-- and had to travel 3 hrs one-way just to get there. So having to bargain for medical care was exhausting in addition to being humiliating. Each visit cost me a few hundred, which I would pay in monthly installments. As soon as I paid it off I would get to make another appointment. I didn't get the care I needed and was forced to wait longer between appointments than I should have. So it might as well have been "long lines and rationed care"-- same result in the end.

  8. #38
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    It sickens and saddens me to hear these stories from my friends in the US about having to pay so much for health care and also having lesser treatment. I have heard many stories on FB how US health care and medicare is just getting worse. It seems like the last few years many have to pay way more for their medicare and simply cannot afford it now and do not have it.
    Phil Berggren, dx 2003

  9. #39
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    True enough on all the insurance complaints and failures...it shouldn't be that way, but we're improving, we could've been born in, say, the 16th century??? Hmmm? As for me, I'm a lucky one...Mayo in Phx has been nothing but good to me Sangye...I do suppose it's a matter of luck and location and income, of course. I don't know that I'm getting lesser or better treatment than anywhere else, but they make me feel as if I am getting the best. And, in the US, medical treatment, the best & most updated, is usually available according to income/ability to spend! Sorry, fact of life...not fair, not right, certainly not applicable in all of our situations...this or any other disease. A good friend took his wife directly to Johns Hopkins, he could afford it, I can't, no problem, I will find my way...and if I don't...then it's all a moot point, isn't it!

  10. #40
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    I need a weggie clinic over her in the Sunshine state. Medical care here in the US is very High unless you are 65 and have medicare. Its very hard to get individual insurance if you have a pre-existing condition. We tried getting private insurance and my whole house hold was declined. I have insurance through by job wich I pay a portion but Its and HMO you have to go to the doctors they assign and also hospitals . So you don't get to go to the doctors you wish. Hopital stay is very expensive. Its very scary! If I loose my job no insurance.

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