TOBI

[ashton2005]

Ok im sorry but this PA stuff is new to me.. as you know we found out yesterday that ashton cultured it.. well they told us the TOBI would be ready today before 3:00 and now they are waiting on a prior auth from the dr to be faxed to the insurance.... so we have a delay in starting.. how long do you guys all wait to start it or do you start the next day?? im just worried now that the longer we wait to start it the worse hes going to get.. and i really dont want to be admitted.. i guess overall im just getting frustrated they told us yesterday the prior auth would be done and now i cant even get ahold of the nurse at the clinic to check on it but our insurance says they dont have anything there.... UGH FRUSTRATING!!!!!!!!!!

 

[Ratatosk]

Since this is the first time he's been prescribed tobi, don't think it would matter if he's a day or two late. More of an issue when he's on it and keeping to the 28 days on/off cycle.

When DS was first prescribed it, I called our pharmacy from the clinic in the Cities to see if they could get it for him -- they told me they had to contact their supplier the next day to see if it was available and then have it shipped -- so they contacted the hospital pharmacy and found some there for us --- warning us about the $536 copay -- we're responsible for $15 + 20% for meds with a $1,000 out of pocket max each year. So our delay wasn't preauthorization, but getting our local pharmacy used to ordering it for us. Now I call the day before and it's ready the next afternoon.

BTW, if you DO have a larger copay, you may want to contact the Tobi foundation -- they work through cf services pharmacy and pay copays over $25 or pay for people who are uninsured or whose policy doesn't cover it.

 

[ashton2005]

thanks Liza.. im just worried that he will get worse before we get it in him.. but that may just be because this is my first time dealing with it...

 

[anonymous]

I think it took a week for us to get the precription and then to receive it from the pharmacy. It was frustrating since my daugther at the time needed it due to a bad cough. A few days is not going to be much of an issue for your son if he needs it due to a PA routine culture. Hope everything works out soon.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[thelizardqueen]

I would agree with Liza. THe sooner the better yes, but because this is his first time, a day or two being late won't make much of a difference. I would be concerned if he had already started the cycle and he was late.

 

[ashton2005]

thanks you guys im glad to hear that.. and hopefully we will hear from the pharmacy soon... because like i said i want to avoid the hospital more yucky stuff in there!!!

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ashton2005</b></i>

Ok im sorry but this PA stuff is new to me.. as you know we found out yesterday that ashton cultured it.. well they told us the TOBI would be ready today before 3:00 and now they are waiting on a prior auth from the dr to be faxed to the insurance.... so we have a delay in starting.. how long do you guys all wait to start it or do you start the next day?? im just worried now that the longer we wait to start it the worse hes going to get.. and i really dont want to be admitted.. i guess overall im just getting frustrated they told us yesterday the prior auth would be done and now i cant even get ahold of the nurse at the clinic to check on it but our insurance says they dont have anything there.... UGH FRUSTRATING!!!!!!!!!!</end quote></div>

have your doc call your chiron rep.

they may have samples that you can have for a few days. or maybe a certificate that u can take to the pharmacy to get a few days free of TOBI until your PA goes through.

 

[anonymous]

Hi Christi, are you going through CF Services? They might be able to get it to you quicker than a regular pharmacy. TOBI costs over $3,000 and reg. pharmacies often freak out over ordering it bc they are worried they will get stuck with it...the first time Sydney took TOBI, we got it from Walgreens and it did take a few extra days (and I was worried about things getting worse just like you are). After that, we got it from CF Services and we ordered it ahead of time so that she could follow the 28 on & 28 off.

HTH,
Kelli - mom of Sydney 3wcf and Andrew born 5.6.06 nocf

 

[folione]

If it helps calm your nerves any, the first time my son cultured PA the clinic and lab failed to talk to each other and it was a month before the Dr. knew the culture was positive. This was when my son was 14 months. He was admitted, mostly I think because the Dr. was a bit panicked. Every throat culture and a bronch. done at the hospital turned up zero PA.

Also, if you think about it, the culture typically takes a week before you hear the results so one more day is really not a big deal for waiting to start.