when will IVIG be covered?

[LaurenK]

Anyone know? If this phase 3 clinical trial works, would insurance companies be obligated to pay for it?

[beeskneesmommy]

No insurance is ever obligated, but they risk liability if the evidence is overwhelming and it become recommended treatment. Dr. K apparently is telling people that in 18 months, things will change in this aspect...

[thenmama]

No-- a successful study isn't a slam dunk. Many will say it's only one study and isn't enough, etc. They fight hard to deny covering expensive treatments. We really need a concerted effort to move things along-- some of which could happen now. If I was coaching Team PANDAS vs. the Insurance Industry my game strategy would include the following:

 

1) (Immediately) Draft a letter/statement pointing out that IVIG (and PEX) are part of the standard of care for treatment of PANDAS. Get this statement signed by all of the PANDAS docs, and as many other treating physicians as possible-- from the range of specialties and gen peds (I'd also specifically shoot for a bunch of docs who're based at the top tier hospitals/Universities), as well as relevant researchers and leaders of organizations/institutions. Each treating doc gets a copy of the signed statement to include with all insurance claims/appeals-- so instead of one doc against the machine-- suddenly our whole TEAM PANDAS is on the field for each and every PANDAS insurance case (and they'd all only have to spend time on it once-- some of them just long enough to add a signature). Plus, the team would be more impressive than the outside opinions and external review scrubs the insurance companies get to support their denials (if a doctor is any good, s/he isn't likely to be doing those gigs-- the ones who do are mostly a bunch of hacks and they have little-no professional reputation and probably don't even treat PANDAS themselves).

 

2) I would send the statement (from step 1) to Michael Pichichero and the editors of UptoDate. I would ask that a revision be made to the PANDAS article so it includes these treatments in the standard of care, and point out that the current article reflects the NIMH's previous position on IVIG, and since it was based on the former position of NIMH they should now edit the article to reflect the most current info and position.

 

3) I would also try to get to the editors of the few compendia used by insurance companies to set their policies/determine covered benefits. Getting it in one of those would be HUGE--could possibly have bigger impact than the study.

 

4) I would survey the medical policies for IVIG and PEX, and the experimental/investigative criteria from the major insurance companies. I would use the info I found in those to determine an ongoing strategy and what additional actions might be helpful in getting coverage for PANDAS treatments.

 

I'm sure I'd do more than that but right now I can barely keep my eyes open-- too many successive nights of poor sleep!

[PowPow]

I vote thenmama as Captain of TEAM PANDAS..

anyone second the motion????

 

excellent gameplan , by the way.

[tpotter]

I second it, and call for the vote!

 

Great suggestions.

[mdmom]

Thenmama,

 

How can I help? Glad to be a team member. Seriously.

[LaurenK]

That would be great. Beeskneeesmama? why 18 months?