(I know this is a long post, but please, bear with me...it has a great ending...)
I have Kaiser Permanente Insurance. It's an HMO. It is through my employer, but my husband owns the business and it still costs us almost $30K a year to insure just my husband, myself & 2 kids...and the worst part is that even though my GP is giving me referral to Dake at Stanford, they are still refusing to pay for ANYTHING!
Alex called to give me that good news last Monday and to give me the costs I will have to pay out of my pocket...(she said everyone's insurance has at least paid for something...except for me and one other person, who also has Kaiser... here's what she told me...
The testing & procedure is $82,000 - $120,000 (depending on the number of stents and how long you are in surgery, etc) and since I am paying for it myself, I will automatically get a 40% discount, but that's still between
$49,200 and $72,000!! That's not including airfare from Atlanta, hotel, car, meals, meds...I did apply for financial aid from Stanford, but Alex said they lost my application, even though I sent it FedEx, sig required...she said their financial aid dept. is HUGE and it would take her literally weeks to track it to whoever's desk it ended up on...and then give it to the one person who is handling the fin aid apps for the CCSVI patients. (So we are getting special consideration.) So, I emailed a copy of my app to her and she fax'd it to the right person, but I wont know anything until maybe just before the procedure...but here's the GOOD PART...
Since I am a consultant, contracted to one of the largest pharma companies in the world, and they own a ton of subsidiaries that are also drug manufacturing companies, (and even one that makes stents) I had an occasion to talk about this to the person I report to, at the pharma company, who is a VP of Worldwide Quality and I told him about the procedure, how much it is going to cost, etc. AND...
(Here's the good part...)He called today to tell me that he meets with the heads of Regualtory for all their companies, once a month, in person, and that they are high level enough to approve the big bucks...like to donate money to charities and that they do it all the time...he suggested that he set up an appt for me to meet with them, after the first of the year, to talk to them about setting up a foundation under the parent company’s name and have a bunch of the subsidiaries sign up to fund it! Then I could run the foundation and take requests from people who don't have insurance or can't pay their part of the CCSVI procedure and recommend them to the foundation to pay for all or part of their procedure!!!!!!!!!!!!! I about fell out of my chair!!!!!!!!!!!!!!
I had run a 501(c)3 once, back in Falls Church, VA...we bought the old Stete Theater that was going to be torn down and had it renovated to a performing arts center. So, I do know a bit about how these things work...but what a perfect job THAT could be, right??????
Of course, it will take a while to heal up, after the stents, get the appt set up, deliver a killer presentation, and then for them to go away and ponder it, ask questions, me respond, they ask more questions, and then if they would agree to do that (talk about a dream come true!) it would take some time to put in place, set up the non-profit organization and hire people to work with me...but I can't think of anything better that could happen (except getting my life back again, through the CCSVI procedure)!! I used to be a Senior (Corporate) Technical Trainer and went all over the world, teaching classes on how to run a Network Control Center. So, I figure if I could teach a 6 week class to people ( some of whom didn't even speak English...like, I taught in Rio de Janiero, Zurich, Rome (it was a cool gig…) then I could certainly, go around the world giving presentations to companies to get them to donate to this foundation! How much easier it would be to talk about something that could make such a difference in so many lives, and that I am passionate about!!!( I'm not half bad as a presenter, if I do say so myself... At least I used to be, until the cognitive problems began about 4 years ago (same time I started on Copaxone and then Avonex...coincidence? I think not...)) and (please, God) let the procedure fix that...I'm digressing from my own topic...sorry...I'm just so excited at the prospect of all this...!!!!
How wonderful this could be, not just for me, but for the CCSVI patients that thought the cost would be prohibitive for them! WOW! My adrenaline gets going just thinking about how great this could be!!
If this does come to fruition, I will need people to work with me, and I believe and am hoping that they will be paid positions...and I figure they can be worked from home (so, of course, MS patients would be first to be considered) the first place I will come to tell everyone about it, will be here on TIMS, and recruit from some of the people who have been so great about the research and sharing their information, time and resources with the rest of us...
If anyone has any experience in this arena, or has an inclination to, please send me an email or PM, as I am going to get started on my presentation right away! That way, while I'm recuping, I will hopefully, feel good enough to get it ready to present, ASAP, to the people who can afford to start the foundation. That way, as soon as I am able, I will work on getting that audience with them! I think it will be a no brainer, to get the meeting, because this guy brought it up to me...not the other way around!! And he is a straight shooter...not the type to just throw something like that out there, if he couldn't make it happen...maybe if we all kept it in our thoughts and prayers...please? I believe that collective thought (like prayers) have an enormous amount of energy that can actually affect the outcome of things...after all, haven't we all been praying for a 'cure' ever since we got the diagnosis?
So, I had to share this with you, so we could all start the mental energy ball rolling and, hopefully, this will become something tangible in the near future...it almost seems too good to be true...at first, I was afraid to even talk about it...afraid it might, somehow, jinx it or that I shouldn’t be so open with something that I was not sure would even happen ...but the more I have been thinking about it, the more I think I needed to tell you all about this, to get help and prayers from you, so this does become reality! And, of course, the people on TIMS are responsible for helping us all to recapture some things we thought we had lost for good...
What a difference you all have made in my life and all the lives of people with MS who will benefit from your hard work, research, willingness to give of yourselves to find out and spread the CCSVI word! You are truly an awesome, amazing, super great, terrific bunch of astoundingly wonderful people...and I thank God for you all every day!