For those of you that are reading this and are not living and breathing the many struggles of the Mito World, here is a little explanation as to why this post is so important to me:
There is no cure or treatment for Mitochondrial Diseases, so drug companies rarely spend the dollars to research drugs that will help improve the lives of those living with a Mitochondrial Disease. This means over the counter vitamins/supplements are the only options for the “Mito Cocktail”.
Today I had some time and decided to pick the “fight” back up with the Insurance company that I started Jan 1 when I tried to REFILL a prescription that I had been getting for months for Daphne.
Dec 2016 the Rx was $0
Jan 2017 the Rx was $50
We could get a similar drug over the counter for $15 but it is 500mg and Daphne is prescribed 300mg.
Your probably saying not a big deal just split the capsule and call it a day. Yeah we did that until I found a compound pharmacy to make the EXACT dose that she needed and ladies and gents I worked hard on that so I was not going to be told different now in 2017.
*Note a capsule cannot be perfectly divided as the contents inside are not guaranteed to be equally distributed. So you see my driver here? I want it to be perfect for my child, she deals with enough crap we cannot control, this I can.
Well I had a great experience with Gloria from Georgia at the end of 2016 figuring out why insurance would not cover this drug and how the pharmacy was running it incorrectly and how a filler they use was not an allowable cost and she got the pharmacy to just give me the $9 filler for free.
*Note I have a little history with this pharmacy, they screwed up a very, very expensive prescription for my dog and I did not flip out on them so yeah basically they owe me big since they didn’t lose their license over that. My only comment with a smile on my face was, good thing it was just my dog and she is still alive and you know my daughters Rx is filled here so don’t screw that up or we will have a problem, love mama bear. So yeah I basically get whatever I want from them.
So when I started having issues I wanted Gloria back but Jessie didn’t want to give her to me and he wanted to help and said I understand and will call you back in 45 minutes. Over a month later and yeah I was real busy in that time….nothing from Jessie. Don’t worry Jessie I will never ask for you so you will never have to deal with me.
Today I called and spoke to a few people and a few different numbers and was frustrated as this was not how things were handled in 2016 and then had to hang up on them when a coworker came by (probably someone watching out for me above did that) and so I called back and spoke to the most lovely of humans and I forgot her name. Anyhow she was with Express Scripts within our insurance.
Lovely lady in Express Scripts let’s call her “G” walked me through, answered all my questions, probably appreciated my knowledge to date and gave me the tools to be even more informed and have all kinds of access at my finger tips.
- I learned my In Network out of pocket max (OOPM) which includes Prescriptions not just Medical ( I did not know that, you will see why that is important in a min)
- I got access to express scripts online which shows me the out of pocket stuff, all prescriptions filled and the cost since we have had the plan, mail ordering, etc.
- I learned that the drug in question was $0 to us in 2016 b/c our out of pocket max of $7,000 was met (I took a big gulp and said what, wait, how, I did not pay that much)*
- I learned that our doctor can call in a larger quantity of her prescription and I can get more for the $50 for now until our OOPM is met. UMM YEAH!
- I also asked how I can get other supplements we buy that are not a prescription to go towards our out of pocket max and its simple….well kind of, our Doc has to file an appeal on our behalf and ask for an exception to include the cost of the over the counter meds towards our OOPM deductible.
*You may have known this and maybe I did since I answered the questions that I asked but basically if you get a RX filled that costs $5,000, insurance pays $4,000 and your EOB says you owe $1,000 (eventhough we never pay what the EOB says) that $1,000 goes to my out of pocket max.
SO….I called her Mito Doc Nurse, explained my craziness, she was excited and said let me put the request into the doctor. I am asking right now for a 3 month supply for the $50 versus the 1 month supply and I also asked for him to appeal the ubiquinol and for him to provide a larger quantity for the other Rx she gets so we have a buffer.
I am going to UMDF on the hill this summer and didn’t know what or how I was going to talk to our congress person about health care, insurance and prescriptions and present and defend something that is obtainable but I believe this is it. This is one step to helping Mito Families.
To get Over the Counter Vitamins and Supplements to count towards In Network Out of Pocket Maximums!
The company I buy Daphne’s Ubiquinol (CoQ10) from is fighting the Mito Cocktail be covered by Insurance so I am sure this will be a start and have some backing.
The ultimate message here is:
Don’t give up or give in, talk to people, talk to doctors, talk to your pharmacist, talk to the insurance company to learn as much as you can.
Be polite and nice, it’s never the person on the other end that made health care the way that it is, it is however their job to ADVOCATE the best that they can for you.
My dad always said “You will attract more bees with honey”
I am not a person that is easily defeated, I do not take NO for an answer. There is always more than one way to skin a cat.
There is only one person that will be the best Advocate for your child and that is YOU!