Making lemonade from molehills

[Al]

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

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

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.

[Sangye]

That's awful.

[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?