we can't rely on one particular organization to help us!
I've learned a lot since I got my CIDP...the 'acquired' type.
1-That any diagnosis issues aren't covered by support organizations for 'INHERITED' immune diseases....they've enough problems fundraising and coping as it is.
2- That Medicare...once I 'hit' that golden age will not cover IG treatments for 'acquired' immune issues. I've good insurance now, and I will be covered to some degree then, but my co-pays are going to go thru the roof!
3- Genetic testings as Cycleops describes are VERY EXPENSIVE! And often inconclusive, so there are no guarantees there.
4-That leaders at the organization BobB referred to are advocates for IG therapy and do research in that quarter, useful research-mind you, little is being done/advocated regarding the FINANCING of IG therapies for patients, especially for those hitting that 'magic year'.
5- That IG manufacturers really have only completed one 'CIDP/IG' efficacy trial, and that, only very recently. How soon the FDA can approve this [don't hold your breath] can, does, and WILL affect possible future medicare/medicaid coverages in the future. Do consider tho, the constant added expanding demands of coverages for many other medical conditions and issues as well. The list is virtually endless!? As long as 'off-label' is available to those who can pay for experimental uses or not, the supply will not likely increase at the rate things are going, and the profits are certainly there for the Mfrs!
6- The NAF IS an organization founded by a smart, strong person with Multifocal Muscular Neuropathy...How many of you know a person with this? This person has also been a 'lobbyist' for medical companies on the national level until he got 'IT'. He knows his way around. His board is chock full of experts from all over the US and he does USE them!
7- The organization supposedly representing US is not a member of the most premier host organization for those of us - National Organization for Rare Diseases [NORD]. The NAF & GBS-CIDP Foundation Int. are members as are dozens of other prestegious member organizations for a multitude of issues, The One particular organization cited earllier, for unknown reasons, well, is NOT.
You have to pick and choose who you wish to contribute to and support. I've found no reason yet to support that one particular group....I've got to think hard how to divide my pennies in supporting others.
8- That any new medications being developed for neuropathies will probably cost 2-5 times as much as those available now-effective or not. Look at cancers treatment meds?
It is up to us to educate those around us....and do it well! It is up to us to educate to every decision-making level we can, be it in the family, medical or governmental communities. Only we can learn who we are speaking to best and put it into the context best for them to asorb, learn and RETAIN for the future, especially OURS. I really don't think a 4minute 30 second spot on a talk show or news show is going to DO IT! Nor any 15-20 second PSA shown intermittently. I refuse to let things just go at that. I'd much rather get into the Congressional Record with 'testimony'? Tho the record is thousands of pages a week, some folks who count DO read it. Enough! - j