I'm not very happy with Biomarin and my insurance co. – not thrilled with my specialty pharmacy, either.
Ok, so I called to get a Kuvan refill – only 4 days before I'd run out. Being this close would not have happened with my previous pharmacy, who always called well ahead of when I would need a refill – unlike the one I was forced to move to when the previous one was bought out. Walgreens Medmark is…inconsistent at best in calling ahead – so I have to try to keep on top of when I'll need a refill. I would have been sure to call earlier – but I've never had a problem getting a refill before, so didn't think much of it.
Next day after I call to get the refill, Medmark calls back and says that the cost of the medication has gone up and my insurance co. has to do an override – so they pushed the delivery back one day – and said they'd call if anything changed.
Got no call the following day, or the day after that…and also no delivery, which I did not know until after COB, so I couldn't have called on it then.
So, on a Saturday morning (today), I call the pharmacy – they've called every day for 3 days to the insurance co, and have heard nothing. Great. Would have been nice if they had called to let me know that.
So, I call the insurance co to have them put in an order for an override – they apparently had no record of the pharmacy having called. Great.
The override could take several days – this is Saturday, and he tells me to call to check on the status on Tuesday. Well, I have less than a full dose remaining for Sunday, let alone TUESDAY. Great. Just great.
If only this whole medication mess worked as well as my GOVERNMENT-PROVIDED formula delivery. That's always been predictable, on-time, and the ONLY variable is my remembering to order – which I've figured out and have down to the right point so I never have a problem.
I'm really not happy with this, and I'm taking every opportunity to let EVERYONE know it.
Have you contacted your BPPS representative? We have found them to be very helpful when there are issues with insurance and getting us a Kuvan supply until the issue has been resolved. The number is 1-877-695-8826. They are open M-F, but have Fed-Exed a supply of Kuvan overnight to us when we encountered a problem.
I agree with Brenda. Speak with your BPPS representative and see what they can do to help. I started Kuvan before it was FDA approved, so at first my Kuvan was provided by Biomarin. When the study I was in ended Biomarin continued providing my Kuvan until my insurance situation was figured out.
I understand that it will take sometime to getting used to not having those 'reminders' from your pharmacy that your perscription is running out. It might help to figure out how long a supply will last and write on your calender two weeks prior to running out that you need to contact your pharmacy.
Breanna 18 CPKU
Yes, a supply is supposed to last 30 days, so that should be easy enough to monitor – I manage to do it fine with my formula.
I will call Frank at Biomarin on Monday and see if anything can be done – be nice if I had some idea when the delivery will finally come, though. sigh.
I have thought about trying out Kuvan but the whole insurance issue is holding me up and the fact that i would have to supposedly take 18 pills a day. For those of you who do take it, I am mainly interested to know if you all still need to take that many pills and if so how do you do it? I would think it would take forever to take that many and i would get sick from drinking so much water.
I take Kuvan — I only take 9 pills — It depends on your height and weight though. I used to have to take 120 pills, so 9 pills to me is a piece of cake…. 18 would be too! I know some dietitians suggest to their patients take pills split in the morning and night if they are having trouble doing it all in one sitting. Also, I do not drinking a huge amount of water to swallow the pills. In general, I do drink a lot of water — but not when I take Kuvan….
If you have any other questions – feel free to message me.
Also, BBPS — through BioMarin — contacts your insurance and deals with all of the insurance matters… The company promises that as long as you respond to Kuvan, they will make sure you get Kuvan… If it is too high for you, they will provide assistance for you.
Like Katie I take nine pills a day. To be honest it takes me less time to swallow my nine pills than it does to make a cup of formula. The pills are relatively small, so I am able to pop all nine of the pills in my mouth at once and swallow them all together.
Contact BPPS. If you do not know how to get in touch with your BPPS representative talk to your dietitian, or you could call them at this number 1-877-695-8826. BPPS was very helpful to my family. My parents filled out a form that they gave us, and BPPS did everything else. In less than a month we had approval from our insurance company for Kuvan.
Breanna 18 CPKU
all 9 at once?! WOW impressive… I can only 3 at a time.. but you are right – it is quicker than making the formula
LOL! Yep I was in a hurry one morning, so I decided to try shoving them all in at once. I have been taking all nine at once ever since :).
Breanna 18 CPKU
props to you!
The whole issue has been resolved, at least this time.
BioMarin was actually very good, sent me an emergency supply very quickly, and the pharmacy actually delivered earlier than the insurance co. had promised.
The real culprit in all this is the stupid red tape at the insurance co. I guess I'll just have to be sure to order early enough to give them time to go through all the bureaucracy before I need the refill. Stupid, IMO, that they have to do this every month.