Can anyone from CCSVI Alliance tell us why there's still no help on the Alliance website for those who need help to appeal Medicare's ruling that says CCSVI treatment won't be covered because it's investigational? cheerleader told the forum this problem would be addressed at the Alliance's then-next meeting. Patients have already restenosed with jugulars that clotted closed, and even more patients will restenose without another procedure.
HP...we realize your frustration, but this goes far beyond the scope of our volunteer organization. Until we have peer-reviewed and published studies confirming that endovascular procedures are necessary
, Medicare will not change their position. They need peer-reviewed and published research. Until then, they consider treatment "investigational" Here is their explanation.
DESCRIPTION OF PROCEDURE OR SERVICE
The Plan defines the terms "investigational" and/or "experimental" as medical, surgical, psychiatric, and other health care services, supplies, treatments, procedures, drug therapies, or devices that are determined by the Plan to be either: (a) not generally accepted or endorsed by health care professionals in the general medical community as safe and effective in treating the condition, illness, or diagnosis for which their use is proposed, or (b) not proven by scientific evidence to be safe and effective in treating the condition, illness or diagnosis for which their use is proposed.
We'll be discussing this with the doctors in Las Vegas later this week. It's all about confirming the science.
I know you are angry with me, personally....but I'm honestly doing the best I can for those with CCSVI.
Jeff and I could have walked away from all of this (gladly) two years ago, but we're still involved.
We give thousand of dollars away each year to further this research, and spend untold, unpaid hours working for more research. And I've always been honest that this is a procedure which needs to be done close to home, with lots of monitoring for restenosis and clotting. And that restenosis happens in half of all people treated.
Support CCSVI research, financially or in any way possible.
all the best,
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS