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        New Message Board Archives >> 2002 Posts >> OUCH door is Open
        
(Message started by: don on Oct 28^th, 2002, 3:04pm)

Title: OUCH door is Open
Post by don on Oct 28^th, 2002, 3:04pm

Due to the terrific work of all past and present OUCH officers and members, the door to our future is wide open.

So when we walk through it, what direction do we go and what do we carry with us? Lets hear from the membership.

Suggestions
Wish List
Ideas

email me at Bgull2@hotmail.com

Title: Re: OUCH door is Open
Post by catlind on Oct 28^th, 2002, 5:16pm

Dear Mr. President (select)

Under the category of wish list:

A cure :)

Cat

Title: Re: OUCH door is Open
Post by don on Oct 28^th, 2002, 9:09pm

Well i'd like a 24' Graddy White with a cuddy cabin and twin engine Mercs, but now that OUCH membership is free I'll never be able to embezzle enough to get it like Bob P did. How is the old cabin cruiser runnin Bob?

Did I say
OUCH MEMBERSHIP
IS FREE ?

Have YOU joined OUCH ?

Title: Re: OUCH door is Open
Post by Not4Hire on Oct 28^th, 2002, 9:27pm

on 10/28/02 at 17:16:09, catlind wrote:

Dear Mr. President (select)

Under the category of wish list:

A cure :)

Cat

.....I'd go for that...meanwhile, just keep on puttin' our case in front of the rest of the world.....like Slammy talkin' to Dr Kudrow.....like CH being mentioned in Time magazine ....like having people like Ueli keeping us on our toes ....like DJ making this place for us to rant and rave ....well, like yer already doin'.......

Thanks ;D

Title: THERE WAS AN ARTICLE ON CH IN TIME?
Post by Lori on Oct 29^th, 2002, 3:49am

COULD SOMEONE PLEASE TELL ME WHAT ISSUE IT WAS IN? I'D LOVE TO READ IT.

Title: Re: THERE WAS AN ARTICLE ON CH IN TIME?
Post by Not4Hire on Oct 29^th, 2002, 8:35am

on 10/29/02 at 03:49:10, Lori wrote:

COULD SOMEONE PLEASE TELL ME WHAT ISSUE IT WAS IN? I'D LOVE TO READ IT.

I think it was about the October 7 issue....no idea what YEAR because I read it at my son's orthodontist office....... ;D

Title: Re: OUCH door is Open
Post by Bob P on Oct 29^th, 2002, 8:46am

About the most often mentioned thing I see on the MB is getting insurance to cover the required meds.

Not quite sure how to go about this though.

The insurance guys are in it for a profit and I'm not sure just educating them about the needs of clusterheads vs meegrainers would make them change their policies.

Don't know whether to approach them through the doctors or the politicians or both.

Title: Re: OUCH door is Open
Post by don on Oct 29^th, 2002, 9:11am

Why not approach them directly?

Show them the numbers, show them the profits they are losing.

Speak their language.

Title: Re: OUCH door is Open
Post by ave on Oct 29^th, 2002, 4:00pm

Am I mistaken, or was Ted working the Insurance boys already?

But before you have a go at them, you might want to get a fixed protocol for treating clusters.

We have one in my country.
It lists the best treatments (Vera, then try Lithium, etc.) (plus try Imitrex and Pred and always O2). Doctors have to follow the list and if they don't prescribe from it, insurers sure as sure want to know why!
This isn't to say you can't get a script for anything else, if the stuff does not help, of course...

Another thing a patient's org might do, is try and get the docs off their collective butts and organise a standard sending on of patients' files to the next treating doc, when the patient moves elsewhere.
In the same vein, if the old doc recommends a certain course of treatment, and it has worked for the patient, "somebody" should stomp on the new doc if he insists on reinventing a well running wheel!

I cannot help you there, as things are organised differently in my country and I would not know where to start. But maybe somebody local at OUCH will know how to find the way?

Title: Re: OUCH door is Open
Post by BarbaraD on Oct 31^st, 2002, 7:24am

I think one of the problems in the US is that each state has an "Insurance Board" - that right there brigs about "red tape" problems. Each state has their own rules on how to do things and rules on how to screw the peoples who have the insurance. We need to start at the top and get a ONE STOP policy with some teeth.

Oh well - it's a thought - But that's the problem. The problems are easy - it's the solutions that are tough.

Hugs BD

Title: Re: OUCH door is Open
Post by catlind on Oct 31^st, 2002, 8:03am

on 10/29/02 at 08:46:24, Bob P wrote:

What about approaching both and NORD and NINDs??
Just my thought. Perhaps they can help to educate the Docs/Insurance co. to understand that CH'ers require much MORE in quantities than do Migraine sufferers....of course that means more money for them, but at least if they change the approval through the medical, institutional and political arena the HMO's will follow instructions?

Did that make sense? Somedays I wonder about me.... LOL

Cat
(See Slammy...Cat is back ;) )
Cat