Making lemonade from molehills

[Al]

I had a session (aka “appointment”) with Drac today, which proved interesting on several levels. You may have noticed an extra feistiness in my other posts earlier. By way of explanation, and on the presumption that you may also find some of this interesting, I will give you a report.

First, my own situation is unremarkable, so this paragraphwill be brief: Anemia markers are low but stable. Kidney markers are high but stable. On the other hand, protein is the best it has been since the whole sorry story began. Drac doesn’t want to address any changes of medication during the holidays. And he agrees that is is a good idea that Imuran users should have liver enzymes checked periodically (my liver tests have always been boring, but with AZA, you never know...).

(Speaking of AZA, you sometimes need to keep your local neighborhood pharmacist honest as well. My prescription, which I started two months ago, stated: “Take one and a half pills daily for two weeks. Then take three pills daily.” The next month, I refilled the prescription, but neglected to look at the label. Then, when I ran out, I tried to renew, but the pharmacist said I was a week early. Turns out they were recycling the original instructions, rather than taking the intent of the prescription, and giving me 69 pills for the price of 90.)

Another thing that came up involved my question about blood pressure meds, A recent report suggested that they are, at least for kidney patients, best taken at night. (Better proteinuria results.) I wanted Drac’s opinion. He somewhat sheepishly admitted that he was “a little behind” on this reading. (The study was in a journal that should have been on his list.) But he agreed that this is a good idea.(He was talking about main BP meds. Diuretics tend to keep you awake.)

From there, we got onto talking about the art of diagnosis and the art of the exam. He mused about the old-time cardio profs in med school who could tell everything about a patient with a stethoscope and sensitive hands. “But nowadays, they just do the test,” he said. “I think this is not so much a dying art as a buried one.” Interesting admission, as was his agreement that specialists tend to look for diagnoses that can be explained from their own professional biases. These things reinforced my feeling that it is critical, in the patient/doctor relationship, to work off-script.

I also challenged, slightly, his business model, though my goal was larger. I believe there are excellent reasons to hypothesize that autoimmune diseases are on the rise generally, and in excess of “better reporting” and more frequent diagnosing. Regardless of whether the hypothesis is correct, however, people who deal with such things will be dealing with far more cases. Now, Western Washington has enough population that it could support, I believe, a vasculitis center of its own, especially with a major university med school in the area. And I made the point (thinking all the time about off-script solutions) that this kind of pooled, interdisciplinary approach would profoundly help patients and doctors, and families. I fully believe this. Besides, it would be a great way to involve the researchers in our very human journeys. (Seattle is the home of the Benaroya Research Institute, (www.benaroyaresearch.org (http://www.benaroyaresearch.org/)), that employs a lot of hot-shot scientists to study autoimmune diseases.). Drac agreed with me. And, I think I did him a favor. He was actually fired up--at least it seemed that way to me--about the possibility of making this happen.

There is my report. I’m still anemic, but maybe I’m not so dead-beat yet....


Al

[delorisdoe]

cool man cool

[ArlaMo]

I would LOVE a vasculitis center in Washington!! I totally respect and love Dr. Langford at CC, but it is a huge pain in the patootie to arrange my life to trek across the country, not to mention dang expensive. Way to go, Al!

[annekat]

I would LOVE a vasculitis center in Washington!! I totally respect and love Dr. Langford at CC, but it is a huge pain in the patootie to arrange my life to trek across the country, not to mention dang expensive. Way to go, Al!

Hello, fellow Washingtonian! Ditto on a vasculitis center here. Great to hear from Al about the Benaroya research center. Had to dig to find Wegener's listed there. I hope that will change. And I know there are people at UW interested and dealing with vasculitis. With more and more people getting diagnosed, seems like it could happen...

Anne in Olympia

[Dirty Don]

I would LOVE a vasculitis center in Washington!! I totally respect and love Dr. Langford at CC, but it is a huge pain in the patootie to arrange my life to trek across the country, not to mention dang expensive. Way to go, Al!

Not sure if we've talked before Arlamo, but there is clear vasculitis help much closer to you than CC! I'm in Phx at Mayo Clinic & Hospital, and NicShaf is in SoCal and has found some docs there who specialize I think...best of luck...

[Sangye]

I'm glad things are gradually improving for you, Al. I was anemic for several years, even after the Wegs was supposedly under control. My docs all attributed it to "chronic illness anemia" which is a poorly understood condition. Turns out it was Wegs rumbling all that time. Once I began rtx the anemia resolved and has never returned unless the Wegs is active.

In regards to the art of diagnosis, when I was in chiropractic school a number of us trailed around after a 70-yr old chiropractor instructor between classes to learn how to really diagnose and treat patients. He was amazing.

[annekat]

Not sure if we've talked before Arlamo, but there is clear vasculitis help much closer to you than CC! I'm in Phx at Mayo Clinic & Hospital, and NicShaf is in SoCal and has found some docs there who specialize I think...best of luck...

There's also the center at U. of Utah, and some specialists in the S.F. Bay area. ArlaMo probably knows about those. But from what I've read on this forum, Dr. Langford and CC are held in such high esteem, that if she is able to make that trek, and is established as a patient there, it is understandable that she would keep doing so for the time being....... I'm assuming she has somebody here for routine stuff, too. However, the expense part is pretty darn important and definitely rules it out for me!

Anne

[Dirty Don]

Agreed on the expense, am damn lucky I live where I do...luck baffles me sometimes!! LOL

[Al]

I'm glad things are gradually improving for you, Al. I was anemic for several years, even after the Wegs was supposedly under control. My docs all attributed it to "chronic illness anemia" which is a poorly understood condition. Turns out it was Wegs rumbling all that time. Once I began rtx the anemia resolved and has never returned unless the Wegs is active.

In regards to the art of diagnosis, when I was in chiropractic school a number of us trailed around after a 70-yr old chiropractor instructor between classes to learn how to really diagnose and treat patients. He was amazing.

In my case, Sangye, the anemia is surely related to poor kidney function, so is connected only indirectly to the disease. Oh, the CTX didn't help either.

You might be interested in the Robertson Davies book, The Cunning Man, which is a sort of murder mystery with a holitistically minded diagnostician as the protagonist. Like all Davies books (some others idiosyncratically deal with Jungian analysis and opera production), it is a hilarious romp.

Al

[Al]

Hello, fellow Washingtonian! Ditto on a vasculitis center here. Great to hear from Al about the Benaroya research center. Had to dig to find Wegener's listed there. I hope that will change. And I know there are people at UW interested and dealing with vasculitis. With more and more people getting diagnosed, seems like it could happen...

I may have bitten off more that I can chew, Anne, but...we'll see.

Al

[annekat]

I may have bitten off more that I can chew, Anne, but...we'll see.

Al Well, you obviously can't do it alone. But with the right connections and your proactive demeanor.......

Anne

[mishb]

I so wish we had hospitals, like what you guys have ........ in Australia.

Don't get me wrong, we have some amazing hospitals that are world class and highly recognised especially in organ transplant, trauma and also research.

I go to one of the top hospitals in Melbourne and am very happy with the specialists that I see, but we see them all on different days, weeks or even different months.
We don't have a set 2 or 3 days where everything is done and you see specialist as required.
The only time this happened for me was in April when they put me in a ward for 4 days to run a bundle of tests etc.

I wonder how much it would cost for an Aussie to come up to, let's say Mayo or to Sangye's Dr Seo - for differing/2nd/3rd opinions.
.......maybe a tattslotto win is in order :wink1:

I know things kind of suck over there with your health care insurances, medical costs etc. but to an outsider, the attention you get at the major hospitals seems so cool.

Am I wrong in thinking this .......probably some will disagree with the care they receive, but still I only know from what I read on here.

Take care all

[annekat]

I so wish we had hospitals, like what you guys have ........ in Australia.

Don't get me wrong, we have some amazing hospitals that are world class and highly recognised especially in organ transplant, trauma and also research.

I go to one of the top hospitals in Melbourne and am very happy with the specialists that I see, but we see them all on different days, weeks or even different months.
We don't have a set 2 or 3 days where everything is done and you see specialist as required.
The only time this happened for me was in April when they put me in a ward for 4 days to run a bundle of tests etc.

I wonder how much it would cost for an Aussie to come up to, let's say Mayo or to Sangye's Dr Seo - for differing/2nd/3rd opinions.
.......maybe a tattslotto win is in order :wink1:

I know things kind of suck over there with your health care insurances, medical costs etc. but to an outsider, the attention you get at the major hospitals seems so cool.

Am I wrong in thinking this .......probably some will disagree with the care they receive, but still I only know from what I read on here.

Take care all Well, I'm no expert on hospitals here, but I think there are a great many U.S. citizens who have no access to the top hospitals and centers such as those where Wegs patients receive the kind of specialist care you mention. The reasons are geographical location, lack of money to travel, lack of good health insurance, if any, etc. Not that other hospitals and doctors around the country aren't good, they just can't or don't offer that degree of specialization or service. If Wegs weren't so rare, I imagine it would be different. I also think the 2 or 3 day workup with different doctors is probably rare no matter what the disease, unless you are in there for a bunch of tests or need to be there for critical care. I'm sure others will have things to say from more personal experience and knowledge than I have.

Anne

[Al]

I so wish we had hospitals, like what you guys have ........ in Australia....

Pluses and minuses, Michelle, pluses and minuses. You can get good care (up to the limits of the state of the art, of course) in the US, but you do need to be lucky or devious (or both) in geography, your insurance (or at least choice of careers), and the medical team you assemble. Then there is the issue of actually receiving the good care that is possible. A strong advocate is desirable, but sick people often have a hard time being their own advocates, and outsourcing advocacy is usually prohibitive.

I don't know the ideal solution. I hope I, or somebody, can come up with one. Maybe, just maybe, we can design something....

Al

[mishb]

Don't get me wrong we have excellent hospitals and excellent health cover.

It is compulsory to have health insurance if you earn over 80k (I think) and with health ins you get to choose your hospital and choose your doctor but you still have a deductible on top of the annual premium you pay.
For everyone else that doesn't have health ins, we have Medicare and you don't pay for the hospital or any tests etc but there is always a waiting period to get in for elective surgery, consultants etc. but all in all, works out fine. Both have there faults but I guess they all do.

I was just curious as to what it would cost someone like me (from overseas) to visit one of your hospitals. The JHU's, Mayo's etc that do have the big teams. they just sound amazing.

[ArlaMo]

I was just curious as to what it would cost someone like me (from overseas) to visit one of your hospitals. The JHU's, Mayo's etc that do have the big teams. they just sound amazing.

My bill at Cleveland Clinic last year was about $8,000 (US). That included an extensive visit with Dr. Langford and another half hour visit with her after all the testing, labs, chest CT, a visit with an ENT plus a tracheal endoscopy, a visit with a pulmonologist plus breathing tests....I think that's about it. Obviously doesn't include travel costs. Cleveland Clinic is not a covered hospital/network for my health insurance so the costs are probably what someone outside of the US would pay. Cleveland Clinic also has a very generous assistance program that helps those who can't pay the whole bill.

[delorisdoe]

My bill at Cleveland Clinic last year was about $8,000 (US). That included an extensive visit with Dr. Langford and another half hour visit with her after all the testing, labs, chest CT, a visit with an ENT plus a tracheal endoscopy, a visit with a pulmonologist plus breathing tests....I think that's about it. Obviously doesn't include travel costs. Cleveland Clinic is not a covered hospital/network for my health insurance so the costs are probably what someone outside of the US would pay. Cleveland Clinic also has a very generous assistance program that helps those who can't pay the whole bill.


I dont even know what to say to that. I have been taking my visits with specialists for granted. wow.

[annekat]

My bill at Cleveland Clinic last year was about $8,000 (US). That included an extensive visit with Dr. Langford and another half hour visit with her after all the testing, labs, chest CT, a visit with an ENT plus a tracheal endoscopy, a visit with a pulmonologist plus breathing tests....I think that's about it. Obviously doesn't include travel costs. Cleveland Clinic is not a covered hospital/network for my health insurance so the costs are probably what someone outside of the US would pay. Cleveland Clinic also has a very generous assistance program that helps those who can't pay the whole bill. Well, $8000 doesn't sound so bad considering that the bill on paper for my overnight stay in our comparatively rinky-dink local hospital was around $7500. Not that I have any complaint about the service I received there. And I am on a state-sponsored health insurance plan for low income people (which may be eliminated soon, BTW, if more tax dollars don't become available), so the amount was reduced significantly by contract with the plan, and I had to pay about $360 of that. That amount covered the room & meals, a CT scan of my lungs, blood work, nebulizer treatments, IV antibiotics, a few other things like Tylenol at inflated prices, and being overseen by an excellent internist who suggested I might have Wegener's based on the CT scan results. My septum biopsy and diagnosis occurred later with my ENT doc. I was lucky not to have had serious enough symptoms for an extended hospital stay.

Sounds like you got more for not much more money, considering your insurance didn't cover it, and minus the "room" and all it's attendant inflated services. Also, the financial assistance for those who qualify is a great thing.

Anne
Olympia, Washington

[delorisdoe]

Well I had 5 days in hospital in june. At $7500 a night I do think the food should be better. I am still in shock over all of this

[annekat]

Well I had 5 days in hospital in june. At $7500 a night I do think the food should be better. I am still in shock over all of this Well, remember, the $7500, if I had had to pay it, included the CT scan and bloodwork (cultures and such), IV and nebulizer meds, etc., not just the room. I'd have to find the bill for the itemizations of everything. It was a private room. I totally agree about the food, it pretty much sucked. I was thinking the long consultations with Dr. Langford that ArlaMo got were probably worth more in themselves than the private overnight room I got. I don't blame you for being shocked, however, coming from a system of nationalized health coverage.

Anne

[delorisdoe]

I had no complaints about the food but it should probably taste better if it costs that much for a stay...

[marta]

We are pretty lucky in Canada when it comes to healthcare costs, hey Leigh? I'm certain I'd be broke if it weren't the case.

Al, you're my new superhero. We're lucky - neigh, very lucky - to have you on our elite little team.

[annekat]

I had no complaints about the food but it should probably taste better if it costs that much for a stay...
The food may not have been all that bad; I didn't feel well, so didn't feel that much like eating it, or they brought it at the wrong times, or whatever. It definitely could have been better quality for what they charge. The inflated prices for OTC drugs, room amenities that you barely use, etc., bother me, too. Yes, you guys in Canada are lucky. Here, we have to listen to people saying how inefficient your system is, or that in England, with long lines and waiting periods and such, when they really don't know what they are talking about. Any system involving a lot of people is going to have some problems, but I'm sure that what you have is way better than our system where good health care is a luxury that many can't afford.

Anne

[delorisdoe]

I have not yet experienced the inefficiency or long line ups or waiting periods. I am sure it happens but not nearly as much as people are led to believe. Yes we are lucky marta.

[annekat]

I have not yet experienced the inefficiency or long line ups or waiting periods. I am sure it happens but not nearly as much as people are led to believe. Yes we are lucky marta. I suspected as much. Like there is no inefficiency in our system? The people who say these things I think are generally those who have good jobs and good insurance. And many are afraid of anything that could be called socialism. There really seems to be an irrational fear of that among certain segments of the population. But then, we don't want this to stray into a discussion of politics.

Anne

[Dirty Don]

I tend to agree Anne, but Wegs and politics? Now there's a combo...can I give Wegs to my senators or congresspeople????? Sorry, that was ill timed, we have the congresswoman who was shot in the head here...sheesh, how impertinent of me. Oh, and I'm not afraid of socialism, it just doesn't work in large numbers...thus long lines...and, at times, inevitable inefficiency...the human being is not streamlined by any means to be overly efficient...discounting the bodily functions...LOL...of course, that puts Wegs in its place real quick...can't afford it? can't do it? can't survive it then...take your place in the apple barrel!!!

[annekat]

I tend to agree Anne, but Wegs and politics? Now there's a combo...can I give Wegs to my senators or congresspeople????? Sorry, that was ill timed, we have the congresswoman who was shot in the head here...sheesh, how impertinent of me. Oh, and I'm not afraid of socialism, it just doesn't work in large numbers...thus long lines...and, at times, inevitable inefficiency...the human being is not streamlined by any means to be overly efficient...discounting the bodily functions...LOL...of course, that puts Wegs in its place real quick...can't afford it? can't do it? can't survive it then...take your place in the apple barrel!!! I don't know if the Canadians call their health care system socialism. And Leigh says she hasn't experienced long lines or inefficiency, though the population of Canada is considerable, if not as great as ours. I'm a believer in letting states take care of some of these things themselves, if they can get the tax dollars for it.... that way there aren't as many people involved and therefore less inefficiency. The state-sponsored plan that I'm on limits some of what is available to me, but I don't have any more problem than anyone else with getting timely appointments, etc. I pay a very small monthly premium and some copays for docs visits, and deductibles apply for other copays and coinsurance. My annual physical and mammogram are free. I think several states have these sorts of plans for low income people, but of course, most states are having financial problems now, including Washington. I agree that the more people involved in any endeavor, the more inefficiency there is likely to be, in general.

Anne

[Al]

I tend to agree Anne, but Wegs and politics? Now there's a combo...can I give Wegs to my senators or congresspeople????? Sorry, that was ill timed, we have the congresswoman who was shot in the head here...sheesh, how impertinent of me. Oh, and I'm not afraid of socialism, it just doesn't work in large numbers...thus long lines...and, at times, inevitable inefficiency...the human being is not streamlined by any means to be overly efficient...discounting the bodily functions...LOL...of course, that puts Wegs in its place real quick...can't afford it? can't do it? can't survive it then...take your place in the apple barrel!!!

Well, folks, we don't have to descend into political trash talk to know what doesn't work and try to design something that does. True, the implementation of a better system will require going to bed with the politicians, but we are nowhere close to that sad day. The first thing is to point out, as many of us have been doing, the dangerous frustrations of what we have now. I'll chime in as well: My own hospital bill, even under the rates contracted by the insurance company, was well north of $150K, for 12 days. This included room and board (such as it was), all tests and scans (lab work, CT scans, biopsy with ultrasound, etc.), drugs and IVs, and the heavy treatment: Bonchoscopy, CTX, and plasma feresis. It did not include doctors' fees, which were all separate. Then there were the post-discharge CTX and plasma exchange days that I could do without an overnight stay. Needless to say, I quickly hit my out of pocket maximum, though this didn't cover co-pays, meds, travel, parking, etc. So, out of pocket expenses in 2010 pushed $5K, and that doesn't account for lost work. This was a hardship, to be sure. But without insurance, I would have been out of business entirely, and a drain on society. There are many on this forum whose insurance is worse than mine. In some cases, there is no insurance. Frankly, I do not see how they can make it.

As I say, the first part of our program is to talk about what doesn't work. More stories, anyone?

Al

[annekat]

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.

Anne

[mishb]

I am so sorry everyone, I didn't mean to start a political war,or a he pays she pays debate. I just had visions of you getting amazing medical/specialist care at those big hospitals, like a Dr House thing and I wanted in. :unsure:
If I ever win the big lotto, I will send some of it over to you all to make life a little bit easier. :crying:

In the meantime, I think you all should move to Australia. Even with the travel costs, it couldn't add up to what you would pay in trying to achieve maximum health.

We have long waiting lists for non insurance people and also long waits at our Accident & Emergency Clinics but as you said, so does every Country, it appears.

I think I will stay here ...... and the hospital food is actually quiet good

[annekat]

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

[Al]

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

[Dirty Don]

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!!!!!

[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!!!!!

Good, Don. Good.

Al

[Sangye]

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.

[annekat]

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

[Sangye]

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.

[pberggren1]

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.

[Dirty Don]

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!

[maria garcia]

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.

[Dirty Don]

Can't do much about your insurance Maria, but there is a Mayo Clinic in Jacksonville...long drive, but certainly doable. Good luck!

[Al]

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.

Maria, without a Wegs specialist, you sort of have to be your own doctor--you know as much about the disease already as many of them. Your insurance story is disgusting; it is precisely what I hope we can, somehow, make right.

Al

[annekat]

Maria, without a Wegs specialist, you sort of have to be your own doctor--you know as much about the disease already as many of them. Your insurance story is disgusting; it is precisely what I hope we can, somehow, make right.

Al Well, this thread started out with idealistic thoughts about somehow getting a vasculitis center established in the state of Washington, and we could extend the idea to other areas of the country which lack vasculitis centers. Now it has evolved into the sad state of insurance, the expense of medical care, and lack of good health care for all in this country, and touched on what, if anything, we might be able to do about it. All good things to discuss here on this forum!

As far as being one's own doctor, yes, I am finding that very necessary, since I also lack a vasculitis specialist! Fortunately, my Wegener's has been simple and straightforward enough that I can do that with the help of this forum. My doctor is not bad at what he does, the tests and treatments he has prescribed are pretty much correct, so far, I think, and they seem to be working. But the office time spent with him and the actual discussions about this disease and its ramifications are so limited that, as I said before, I would absolutely LOST without this forum as far as understanding what is going on in my body. If things turn for the worse, this forum has made me very aware of what I need to do as far as somehow connecting with specialists and given me some resources for doing so. Or if I end up in the local hospital, hopefully the staff there will be able to connect with those resources as well.

In lieu of being able to make specialist centers appear close to home, or finding ways to travel to or hook up with them, we need to keep making regular doctors and the medical community a lot more aware of Wegener's and other forms of vasculitis, and other less common autoimmune disorders, and get them out of the realm of "rare" diseases, in light of what seems to be more and more cases being diagnosed. It is encouraging to know about research centers such as the Benaroya Research Institute in Seattle, which Al cited in the first post of this thread, Benaroya Research Institute - Medical Research Institute (http://www.benaroyaresearch.org). Well, that was my first attempt at inserting a link, and it didn't go quite as I thought, so I hope it worked.

Anne

[annekat]

There is very little mentioned on the website mentioned above about vasculitis or Wegener's! I hope they are actually doing research in that area, or plan to, and that their website will be updated accordingly!

Anne

[pberggren1]

And don't forget there is always Dr. Phil........lol.

[annekat]

And don't forget there is always Dr. Phil........lol. True, I think of some of you as almost my doctors, considering the advice you give and that you've been on here and had Wegener's for quite a bit longer than I have...... !

[Al]

Well, this thread started out with idealistic thoughts about somehow getting a vasculitis center established in the state of Washington, and we could extend the idea to other areas of the country which lack vasculitis centers. Now it has evolved into the sad state of insurance, the expense of medical care, and lack of good health care for all in this country, and touched on what, if anything, we might be able to do about it. All good things to discuss here on this forum!

Well, Anne, threads are sort of like children. You cast them out in the world and wish the best for them. But they are on their own, and develop according to unknown and unknowable rules. Sometimes they turn out very well indeed, and even have successful children of their own. Other times they lose their way--maybe to later get back on a good track, but that isn't guaranteed. I have no problem with where the thread had taken us. A vasculitis center in the Northwest would, indeed, be a fine outcome; so would improving the insurance mess. Another reasonable, and maybe more possible, good outcome would be to bring the researchers into our conversation. This is why I originally brought up the Benaroya Research Institute. (Your link works fine). It is true that GPA is not on their top ten list (there is more money available for some of the biggies, like MS and DM type I), but it is listed, and it could be that we could have some influence in directions to take the research. Finally, as you point out, one of the largest contributions we can make is to educate the clinicians and other medical practitioners.

Al

[annekat]

Well, Anne, threads are sort of like children. You cast them out in the world and wish the best for them. But they are on their own, and develop according to unknown and unknowable rules. Sometimes they turn out very well indeed, and even have successful children of their own. Other times they lose their way--maybe to later get back on a good track, but that isn't guaranteed. I have no problem with where the thread had taken us. A vasculitis center in the Northwest would, indeed, be a fine outcome; so would improving the insurance mess. Another reasonable, and maybe more possible, good outcome would be to bring the researchers into our conversation. This is why I originally brought up the Benaroya Research Institute. (Your link works fine). It is true that GPA is not on their top ten list (there is more money available for some of the biggies, like MS and DM type I), but it is listed, and it could be that we could have some influence in directions to take the research. Finally, as you point out, one of the largest contributions we can make is to educate the clinicians and other medical practitioners.

Al

Hi, Al..... no, I didn't have a problem with where the thread led! I thought it had a good outcome. I hadn't really thought about the money part being a factor in research, how much $$ is available for certain areas of study. It makes perfect sense. I think vasculitis is due for a little more $$, since the diseases like MS already get their due attention. I think one of the best ways to educate the clinicians about Wegener's would be to suggest that they read this forum! If they would really take the time to do so. Otherwise, I guess we could start demonstrating outside of clinics and hospitals to call attention to ourselves... just kidding, of course. It is good to know that research is being done at Benaroya and other places about the fine points of autoimmune diseases, who gets them and why, etc., in an attempt to uncover their mysteries. I found some interesting links on the site that I might not have found anywhere else. It WOULD be cool to influence the direction of the research, and it sounds like having the relationship you do with your doc is a good start.

Anne

[Dirty Don]

It WOULD be cool to influence the direction of the research

The only thing outside of the 'play' anarchy going on now around cities that would influence people, would be millions...no, billions of dollars, or even a more profitable & generous country...GOT MILK?

[chrisTIn@]

And don't forget there is always Dr. Phil........lol.

The 'Doctor Phil Show' is broadcasted here on television!:lol:

[Al]

The 'Doctor Phil Show' is broadcasted here on television!:lol:

Starring our Phil? By the way, there is a lot of ANCA disease research coming out of the Netherlands.

Al

[pberggren1]

Ya, my TV days are over..........lol

[chrisTIn@]

By the way, there is a lot of ANCA disease research coming out of the Netherlands.

Al

I know, I know...
I'm treated by one of the guys who practically invented 'ANCA'. He also worked and studied in the USA for quite some time.

[Al]

I know, I know...
I'm treated by one of the guys who practically invented 'ANCA'. He also worked and studied in the USA for quite some time.

Really, Do you mind if I ask who that is?

Medical research in the US is highly dependent on financing by the pharmaceuticals industry. ANCA diseases are sort of an orphan in that regard, as 1) they are relatively rare, and 2) all of the drugs we use are already on the market, and they are more heavily supported by those with more famous diseases. So there is not that much interest from the potential fund sources. In Europe, this seems to be somewhat less an issue.

Al

[drz]

Don't get me wrong we have excellent hospitals and excellent health cover.

It is compulsory to have health insurance if you earn over 80k (I think) and with health ins you get to choose your hospital and choose your doctor but you still have a deductible on top of the annual premium you pay.
For everyone else that doesn't have health ins, we have Medicare and you don't pay for the hospital or any tests etc but there is always a waiting period to get in for elective surgery, consultants etc. but all in all, works out fine. Both have there faults but I guess they all do.

I was just curious as to what it would cost someone like me (from overseas) to visit one of your hospitals. The JHU's, Mayo's etc that do have the big teams. they just sound amazing.

A few months ago Minneapolis Mark posted about his week at Mayo and his stated costs seemed incredibly cheap but we wondered if his stated bill included all the charges. I would guess the majority of people going to Mayo Clinic in Minnesota come from someplace other than Minnesota. For awhile they used to have many Arabic stores around Mayo Clinic because of the large amount of business from that part of the world. They are glad to give info to prospective patients and you can do it via internet and email if you wish to inquire.

[chrisTIn@]

Really, Do you mind if I ask who that is?

Medical research in the US is highly dependent on financing by the pharmaceuticals industry. ANCA diseases are sort of an orphan in that regard, as 1) they are relatively rare, and 2) all of the drugs we use are already on the market, and they are more heavily supported by those with more famous diseases. So there is not that much interest from the potential fund sources. In Europe, this seems to be somewhat less an issue.

Al

I don't know excactly what you mean by 'In Europe this seems less an issue'...:unsure:
ANCA-associated diseases are just as well 'orphan diseases' here. NOT interesting for the farmaceutical industry. :sad:

The name of my doctor is Jan-Willem Cohen Tervaert. He studied in The Netherlands, but he also attended Harvard Medical School.
Right now he's a professor at the university of Maastricht, and (still) works in the Academic Hospital of Maastricht (AZM) also.
Maybe not for long, from now on, because our minister of Heatlh, ms Edith Schippers, cut the budget for immunology research.
She wants to re-organise the care for Weggies and other people with rare diseases. A total disaster for Dutch auto-immune patients... :sad:
I'm still treated in Maastricht, but the future is very unsure, as for my treatment.

[Sangye]

That's awful. :sad:

[Al]

I don't know excactly what you mean by 'In Europe this seems less an issue'

There is, or at least has been, at least some government support for research programs in some European countries. This is not true in the US.


ANCA-associated diseases are just as well 'orphan diseases' here. NOT interesting for the farmaceutical industry.

Yes, I know it is a problem worldwide, for two reasons: 1) if it is not an interesting issue for Big Pharma, the research will not get funded; 2) all researched solutions have, if you can believe it, a pharmacological bias. No non-pharmacological therapies need apply.


The name of my doctor is Jan-Willem Cohen Tervaert. He studied in The Netherlands, but he also attended Harvard Medical School.
Right now he's a professor at the university of Maastricht, and (still) works in the Academic Hospital of Maastricht (AZM) also.
Maybe not for long, from now on, because our minister of Heatlh, ms Edith Schippers, cut the budget for immunology research.
She wants to re-organise the care for Weggies and other people with rare diseases. A total disaster for Dutch auto-immune patients...
I'm still treated in Maastricht, but the future is very unsure, as for my treatment.

You have a great doctor--for now. This turn of events is tragic, and, if my hypothesis (that autoimmune diseases are on the rise generally, in addition to better diagnosing and reporting) is correct, very stupid, the wrong direction to go. I do not think it going over the no-politics line to note the failure of the political process, and even the short-sightedness of specific politicians, especially where these matters impact our health.

Al

[Al]

Note to all: Regarding my semi-rant in the previous post, I really am hopeful that we can, in some small way--or, even better, in a huge, colossal way, influence public policy. Autoimmune diseases represent a gigantic expense to society, and thus a major drag on its progress, on several levels. To blow the specter off, for whatever reason, goes against enlightened self-interest. Ignorance leads, at the very least, to a lot of carcasses for the (as yet) undiagnosed to trip over.

Al

[Dirty Don]

Kudos Al, as clear a statement as I've read in here about this disease's real effects...but I don't want to be one of the early carcasses...so I act now...how high shall we jump?

[marta]

Note to all: Regarding my semi-rant in the previous post, I really am hopeful that we can, in some small way--or, even better, in a huge, colossal way, influence public policy. Autoimmune diseases represent a gigantic expense to society, and thus a major drag on its progress, on several levels. To blow the specter off, for whatever reason, goes against enlightened self-interest. Ignorance leads, at the very least, to a lot of carcasses for the (as yet) undiagnosed to trip over.

Al

Hence my attempt to bring awareness to AI diseases as a whole. If people don't think they can be affected in some way (1 in 30 to 40,000 is a long shot) they wont do anything about it. If they know that being hit by an autoimmune disease (pick one, any one) has a 1 in 5 chance of happening, the mindset is suddenly different. I think that's our answer. Here are a couple of quotes from AARDA (American Autoimmune Related Disease Association - aarda.org)

"Autoimmune disease ...faces critical obstacles in diagnosis and treatment.
• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed."

" Autoimmune disease ...offers surprising statistical comparisons with other disease groups.
• NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).
• NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).
• The NIH Autoimmune Diseases Research Plan states; "Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery."
• According to the Department of Health and Human Services' Office of Women's Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women's Health Information Center."

wow, hey? mindblowing!!!!!

So the way I see it is the only way to get anything significant done is to look past our glass cage and see (and try and help) all the other people stuck in glass cages around us - there are many apparently. MANY! Together we can make a difference, and where's the difference, where's the answer - the etiology of ALL AI disease. The common thread. I'm a believer, and I truly with all my heart think we can do something big together.

"First question is: How does autoimmunity arise? What causes the body to produce an immune response to itself? What are the circumstances, what are the mechanisms, what are the triggers for the phenomenon that we call autoimmunity? That's one question. That's a very basic question that involves biology, chemistry, even biophysics. It requires a deep understanding of the immune system. We need to know a lot more about how the body produces immunity reactions. We know a great deal, but there are still enormous voids in our understanding. We must know that in order to understand how the body normally distinguishes self from non-self.
The second question is: What are the factors in the autoimmune response that sometimes cause disease? These are the two critical questions that are the topics of basic research. Sometimes the feeling is expressed that basic research is scientists fooling around in the laboratory doing things that are unimportant. Well, there is nothing that is unimportant about these questions. They are absolutely critical. We must understand that if we are ever going to develop effective treatments or, more important, cures for preventing autoimmune disease, we must understand them. Just as we would never have been able to control infectious diseases until we found the bacteria or viruses that cause diseases, so we cannot deal effectively with autoimmune disease until we understand its cause." Noel R. Rose, M.D., Ph.D.
Chairman Emeritus, AARDA National Scientific Advisory Board; Professor of Pathology and of Molecular Microbiology and Immunology; Director, Center for Autoimmune Disease Research, Bloomberg School of Public Health, The Johns Hopkins University, Baltimore, MD

[chrisTIn@]

Here are a couple of quotes from AARDA (American Autoimmune Related Disease Association - aarda.org)

" Autoimmune disease ...offers surprising statistical comparisons with other disease groups.
• NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).





Very interesting, thanks for posting this Marta!
This website :: American Autoimmune Related Diseases Association, Inc :: (http://www.aarda.org/) offers a lot of information indeed!

I never saw this figures before. Would be interesting though to see how much people have Wegeners, on the whole group of AI-disease-sufferers.

I totally agree that one of the most important questions regarding auto-immune-disease is:
How does the body distinguish self from non-self!

[Sangye]

Those numbers are amazing... and heartbreaking. Thanks for posting, Marta

[Al]

As the originator of this thread, I am pumped that it has taken the tangent it has, weaving together all autoimmune diseases in a common fabric. And the original thread title makes even more sense to me now. Thanks to all. In particular, Marta's thoughtful post suggests conceptual underlayment for a possible course of action. Thanks, too, for posting the link to AARDA. For me, it would be the best Christmas gift ever, if we were to influence public policy on this issue.

Al