(CAROL)Re: Introduction - Marie

[Guest guest]

Carol,

Thanks so much for the information!!!!!!!!!!!!!!

We also have Personal Choice. When we took the carnitor scripts to be filled, the pharmacist called us to say the two prescriptions for liquid went through but pills were rejected.

The pharmacist called PC as did my husband. My husband spoke to several people there and the final person told him that they don't cover the pills and he was surprised the liquid went through as PC is dropping the liquid form from their list of covered drugs and insinuated this was because of the FDA as they follow their guidelines.

We paid for the pills (cost $85.00 x 2) as it was Christmas Eve day and we are still exhausted, heartbroken and confused after our trip to Cleveland. We didn't want to delay starting the kids on it while we fought it out with PC. We definitely can't afford to do this on a monthly basis. It looks as though there is a good possibility my other four children and myself will be starting it in the next couple months as well and this is just a mini cocktail the first four have been started on. Add the CoQ cost and we'll have to decide whether to buy food or drugs. :)

Our 15 year old son Joe has the Medical Assistance coverage for years but we've never used it. We asked the Pharmacist to attempt to put it through but he said he couldn't because the script was from a doctor out of state. (Joe has Autism, hypotonia, kyphosis and heat intolerance).

By any chance do you see an MDA Neuro at duPont? We've been dealing with her for a year now (as well as numerous other doctors there for many years in just about every department they have). I'm there twice a week for therapy appointments for my 5 year old son and 17 year old daughter (and most weeks a third time to see a specialist). Just wondering because she mentioned she had another family with Mito who went to see Dr. and he diagnosed Mito.

Sorry if this sounds somewhat disjointed. I'm not sure why this is hitting so hard. I've been suspecting this would be our ultimate diagnosis and have worked on proving it to docs for quite some time. I guess I've done a better job proving it to docs then I have to myself.

Thanks again for your help!!!! Looking forward to continued correspondence.

Marie

Re: Introduction - Marie

Hi Marie:

My name is Carol and I also live in the Philadelphia area. I have an 8 year old son with mito and am waiting to hear about my older son. I also have a 51 y.o. sister with mito as well.

Initially, BC/BS Personal Choice would not pay for anything! After some whining on my part and a phone call from my son's doctor, we got them to at least pay for the Carnitor pills. They refused to pay for the CoQ10, Alpha Lipoic, C, E and B1 that he had to take. For some weird reason, Dr. Kelley was able to convince them that the supplements were "medical food" (that wording is significant, why I'm not sure!) and they argreed to pay for everything as long as it was compounded into a liquid form. Luckily I found a Medicine Shoppe Pharmacy in Berwyn that agreed to compound it for me and bill Personal Choice. I know in getting them to pay for it, Dr. Kelley had to both write and talk to the Pharmacy Review Board at Personal Choice. Apparently there was a recent case that an insurance company was sued for not paying for this stuff and once you make your insurer aware of this they become much more amenable to paying for the supplements!

Neal (my 8 y.o.) also has Keystone Mercy (which is considered medical assistance coverage) due to his disability. I never pursued that for prescription coverage as it is considered his secondary coverage. If your kids have that coverage that might be an option, although they need a written denial from your primary coverage before they will even consider paying for it!

Welcome to the group. I am trying to hook up with DelVal and look forward to meeting you.

Carol DuPont

Please contact mito-owner with any problems or questions.