Was Accepted for the trial...
 

Hey all, just had my last appointment @ Northwestern..very great hospital+area.

I saw Dr. Burt he said he needs the FDA to allow the use of a different drug they were having better success with, and they said that would take a month. After this I need to get my insurance to pay...and then it starts.

Sadly, my insurance changes the end of the of the month and he said the new one wasnt going to pay for squat and my other insurance would pay 100%.

Thats the only part i need to work on as we speak....just is stuck in my head and cant get it out till i fix it.

I am on my dads insurance and he works for my grandparents, they are all changing insruance to blue cross blue shield, from Aetna. I dont know if i should ask Aetna to take me on as a customer, but go on a plan alone? I need Aetna to get this done...and its too late to switch back my grandparents said..
ANY ideas are apprectiated.

Congrats on getting accepted medically!

Now the drama begins with health insurance. If your father's BC/BS won't cover it, your best bet is to see if you can get coverage where you work (and if you can, will that insurance company cover this procedure).

At the same time you may want to check on your IVIG and current drug therapies. Will BC/BS cover that?

If you are unable to get coverage through a Group Policy.. then you may really have a struggle. Individual policies won't cover MG (at least in my state), so that means the high risk pool where the premiums are incredibly expensive, the deductibles very high, and the coverage is very conditional!

I'm in a high risk pool (having been denied coverage by every insurance company you think of because of MG) and constantly question if it's worth it!!

Maybe you can work something out with the trial group -- do they have a sponsor? What about MDA Foundation...maybe they could help.

Good Luck with all this - there's got to be a way....you just have to find it!!

[QUOTE

I saw Dr. Burt he said he needs the FDA to allow the use of a different drug




So good to hear that,Tyson! Congrats!
Re: who pays for that - maybe the company that manufacturing that " better drug" can pay for the trial,you still have time to arrange that.We can often see on TV ,they advertise a drug, and say: ' if you can not afford it,call Astra-Zeneca ( or such...),they can help".
Or if MGA create a fund for you - I will gladly participate!
Best of luck.M

Congratulations Tyson! So glad you've gotten into this trial and I really hope that it works for you.

Regarding the payment - with most group plans if you continue to pay the premium even after the cut-over you should be good. You will want to get your Dad to contact the current provider (Aenta) to see what it will cost for him to continue with them. You'll be high-risk and so it will cost you an arm & a leg to get covered now; he has the existing plan and is just looking to extend it outside of the group plan. It should not be too expensive for him to do that. I know that if I were to leave my current job all I have to do is keep paying my premiums to keep my group plan.

Hi Tyson,
I am also waiting on the new protocol for the FDA to be approved. I had to come up with 25k for the stem cell harvesting because medicare wouldn't cover that part. If you need help raising any money for the transplant you should contact the national transplant association, they assist you in fundraising. There is no financial help out of Northwestern, I have looked into everything. I do have a name of a codominium place out there that works with dr.burts patients and they give a pretty good discount on housing, that's where me and my mom will be staying when I go. Good luck with the insurance. If there is any deductible with your insurance, Northwestern will require that you pay it up front before they schedule you. I have been working at this for almost a year, I was accepted last December and hope to be going around the first of the year.
Kristy

Kathy,

that is crazy 25000...yeah. wow. flabbergasted for the most part:).

The insurance I have now (that we are terminating at the end of the month) would have payed all. I am trying to see if we can go back on this and pay a certain amount of money a month for the same aetna package even though it's out of my group plan. I'm calling them in a few minutes to ask if my brother father and I can stay on it.


if so, I plan on starting in that time frame too, I'm sure we will meet at some point if we are both there.

has he been trying to amend the protocol for that long?

My simple reboot was over $25K, and that was just 5 days in the hospital for chemo, with out patient labs. Then I had the complications for another $25K.

You all (lucky, LUCKY dogs, btw!) are looking at weeks in the hospital, and the stem cell harvest involves lots of expensive drugs to produce the stem cells (several thousand per dose) and the pharesis to actually harvest the baby cells and clean/sterilize them. The whole process is probably well in excess of $100K.

Not having MG symptoms? PRICELESS :)

Best of luck to both of you!

Yeah, i am very lucky (in a sense) and feel like this is an opporunity not many get, even though it is a risky trial. Yes. I realize this is very expensive, and your right to not have MG symptoms would be priceless:)

Hi Tyson!
 

Congrats!

I bet you feel AMAZING after this!

Hugs and prayers!
Erin:hug: