Compassionate use program
 

Has anyone ever used or made a appeal for Compassionate use of a experimental medicine?

I'm not sure if it's what you're looking for, I had to appeal my use of rituxin with anthem blue cross because they considered it to be experimental for cidp.
I appealed in writing first, when that did not work, we had a hearing over the phone with myself, a doctor , and 2 members from anthem.

If this is what you are looking for, then prepare yourself with facts regarding your condition, past treatments,and documented success with the drug/treatment you are trying for.
since the doctor on the panel would be a big part of the decision, I put him on the spot right in the beginning of the interview, by requesting his number of cidp patients and his experience with rituxin (both of which were zero, giving me an edge right off the start)
I also found that they tried to intimidate me with power, the fact that they were all there together and I was on the other end of the phone. If this is the case stand your ground and remind them that they too could find themselves in your condition one day, nobody wants to get sick and have to use our insurance. But, that IS why we have it. Good luck---if I can give you any pointers let me know.

Ofcourse with a Limited supply of a newly developed medicine they Will give You a run for Your money.
I could wait a other 1.5 to 2 years.

Die You have soms positive results from Your second infusion?

The above reply was for when I had rituxin. I did not apply to my insurance company for the stem cell therapy--(which is now referred to as "Regenerative medicine").
I knew they would not cover that.
my next one isn't until December......will let you know how it goes.

I am aming at a drug that is currently going into a 3 phase clinical trail and is used for people with diabetic neuropaty but i found also that they use it for other studies to.

So did you study the criteria first or did you write a letter to the FDA or to the the company producing this drug your talking about.

I did not involve the FDA at all in my appeal process.
I researched rituxin and printed out several cases in which it was effective to use as examples. I got a letter of support from my doctor, stating that she recommended it as the next step for me. I copied several pub med and other reputable articles regarding rituxin.
Even with all the above information, my written appeal was denied. I then requested a phone hearing. I had all of the information in front of me during that hearing. Like I said in the above post, I feel it was more my knowledge on my condition and treatment options, and the fact that the doctor on the board from Anthem BCBS had no experience with either, is what won the case for me.
My best advice is go to the hearing prepared, you have a lot of knowledge regarding your condition. Research the treatment/ medication you are looking to get and give them examples similar to your own where it has been successful. Make them aware of other treatments/medications you have tried and failed----especially if they are first line treatments.
Insurance companies always want to assure we have tried first line, less extensive, less expensive treatment options if they are available.

The treatment i am talking about is still in a clinical phase and is starting a pahse 3 study next year.
I had never any treatment for this condition except for 5 mouths of gabapentine and in the early days about 100 electro acapuncture treatments including the supplement i have taken almost to this day.
The treatment is currently only tested on people with diabatics however a a genetic altered growth hormone should work for all kind of polyneuropatisch and i think this would give me a change.
Did you get a letter of a family MD or a neuroligist?.

So to sum it up i dont have any example where this treatment works for somebody with a toxic PN just for people with a diabetic PN it is working very good.

Maybe when you write an appeal or request you should just focus on the use of this treatment you want for peripheral neuropathy in general and not specify toxic or diabetic.
Is it something you are looking at for pain? Pain can be an issue in diabetic or toxic induced nerve damage. If it something aimed at specifically altering your blood sugar and you don't have any blood sugar issues, then would it even be of any benefit to you?