While Vivaglobulin is used for PID

December 29, 2007 at 5:14 pm

Primary Immune Deficiencies/diseases, it’s not approved yet for acquired immune diseases such as GBS or CIDP Tho, for some..it is effective. To be frank, from all I’ve read, it depends on what insurance you are on…and if they allow what is considered an ‘experimental’ therapy for acquired immune issues…Web up your own plan and do either a ‘GBS’ or ‘CIDP’ with The no-space Plus [+] and Policies and procedures Plus [+] IVIG…Most of it will/should focus on the diagnostics, enlightening true, but the ‘exclusions’ of the experimentals is where we as patients have to be positively vocal…in terms of our rights and all. Those on medicare are less fortunate, tho..as ONLY THOSE who have Primary or Inherited immune conditions can benefit from IG therapies.
I’ve read widely and Sub-Que infusions are great for many, either with Primary or Secondary[acquired] immune issues.
Since IVIG is not currently allowed as therapy for acquired immune issues under medicare …unless thru either a subsidy plan or other additional plan [usually with hefty co-pays etc] for us the future can be dismal…unless we speak up either thru the GBSFI or other resources.. I am not now eligible for Medicare nor will I be for a few years, but, I can see how many pot-holes in the road are developing.
My ears to the ground also imply that IVIG clinical testing for Parkinsons is showing a far better result/improvement in that quarter as well. This will put an additional pressure on IG demands and may possibly cut us off? Who knows. I was surprised to learn of this, as the last Parkinsons testings reports I’d read showed an only 20& response rate to IG infusions… What I do not GET is that IVIG has been an ‘off-label’ approved use by many insurance companies for GBS AND CIDP for decades, but is not yet an FDA approved use?
I would think that the GBSFI and others would put vocal and easily documentable pressure on those who have not considered IVIG a candidate for the FDA approved lists…apparently the manufactureres have no incentive rite now…I do not know. Obviously I am frustrated, but I can see a lot of bad ‘ripples’ down the road as to our eligibility for IVIG and then our insurance coveranges… Ok, I may get put off by all this, but it is a whole and true frustration on my part for the long term… It is a wholly scary vice to be put into, involuntarily and without full knowledge… Sigh.