'Tis the Season to check your prescription status

[Ratatosk]

Last year, unbeknownst to us, ds' Orkambi became a medication that required prior approval and it took me about 4-6 weeks to straighten things out and get the prescription filled. For a medication ds had been on for 6 months. With that, were limitations on how much we could receive at a time -- 28 day supply instead of 3 months worth.

We've had issues in the past with meds being placed on the specialty list and instead of dealing with our local pharmacy, which is owned by a relative, we have to deal with a specialty mail order pharmacy out of Florida, owned by our insurance company. I've told this story a zillion times. Several years ago we were required to use them for Tobi and it was a huge fiasco. Insurance was charged and paid for drugs we never requested, nor received --- making it difficult to fill said prescription because according to their records it was to early to request a refill...

We were thrilled when our family pharmacy got specialty pharmacy certification and could dispense Tobi and Pulmozyme, so we didn't have to deal with the out of state mail order pharmacy. Yay!

So yesterday I receive a letter indicating that they are not renewing their certification, so we have to find a new (big name) pharmacy or utilize the mail order one.  Small town/owner run pharmacies go thru the ringer with all the rules and regulations to be certified. If they don't answer their phone within 10 minutes, they get cited along with a whole unwieldy set of guidelines. So I don't blame them for saying enough

This post isn't intended to start a whole obamacare, big pharma discussion... It's just a word to the wise, so you don't get burned come the new year; Check your prescription status, check to see if your insurance company has changed any of your meds from formulary to non-formulary or non-covered -- as was the case with DH's cholesterol medication --- check to see if prior authorization is required, check to see if your drugs have dispensing limits now placed on them, check to see if your drugs are considered specialty medications.

 

[Ratatosk]

Update... So I'm visiting with my coworker about this and he asked what pharmacy we go to, because his son's inhaler was $200 for a one month supply. Turns out our insurance dropped it off the list -- it's non-formulary. So he they need to either find an alternative that meets his needs or file for an exception, which based on my experience is pretty much impossible. We found this out when we tried to fill a Pancreaze scrpt only to find out our insurance only covers two brands of enzymes --- Creon and Zenpep

 

[jricci]

Thanks for posting this—great advice. Unfortunately I’m in the middle of this now. For the first time in 2 years, my insurance company is requiring PA for Kalydeco. I received a letter in the mail 3 weeks ago stating that “starting January 1, 2017 your plan will require Kalydeco to be reviewed before it can be filled and covered by your prescription plan…..If your doctor doesn’t call and get approval, you will be responsible for the full cost.” This is going to be an uphill battle for me since I’m getting Kalydeco off-label. There was a miscommunication with my doctor’s office and I thought the PA process had started. I found out last week that nothing has been done yet. And now there’s a roadblock because when my doctor calls the number on the letter to get PA they tell him that PA is not required. I wasn’t comfortable with that answer considering the letter I received clearly stated the opposite. I found out that the reason it’s coming up as not needing PA is because the insurance database hasn’t been updated for 2017 coverage terms and won’t be updated “until the end of December”. After over 2 hours on the phone and speaking to 9 different people from my insurance company , my company responsible for prescription coverage and the specialty pharmacy , I finally spoke to someone in my husband’s corporate headquarters HR department. They confirmed that there’s been multiple changes to our prescription plan and that I will definitely need PA if coverage is to continue. They are now looking into how we can start the process considering the database hasn’t been updated yet. I want to start this process asap since I expect PA to be denied since it’s not FDA approved for my mutation and I most likely have a long appeal process ahead. This process could very well extend past the time I will have access to Kalydeco. With my refill schedule and the constraint of only being allowed a 28 day supply, I will only have enough Kalydeco through mid-January. I’ve heard of a few people who had to come off and have had a lot of difficulties stopping suddenly. This has the potential to be devastating for me.

 

[Ratatosk]

With ds' Orkambi, I was on the phone several times a week with my insurance, vertex gps, the prescription drug contact, the pharmacy.... I'd get told it was in process and to be patient, told the doctor hadn't returned the form, told the doctor sent the wrong form --- a form sent by insurance to the clinic. Insurance was able to get us an emergency 28 day supply, but it still took several weeks. So my advice is to keep on them, keep checking back and ask if there's anything you can do to expedite things.

 

[jricci]

I’m pretty confident that my insurance will eventually cover. My case is strong. But I’m worried about the time it may take to appeal and the risk of me being without Kalydeco during that time. With the cost of almost $1,000 a day, it works to their advantage to drag this out as long as possible. I’m very stable right now (thanks to Kalydeco) but my lung function is low so taking the gamble of no Kalydeco with a lung function of 38% during cold and flu season isn’t a risk I want to take for any amount of time. It’s not looking promising right now to get the process started before the new year, but I’ll keep trying. I’m glad to know that you were able to get an emergency 28 day supply. If I can verify that my insurance will do the same, I’ll feel a lot better about things.

 

[Ratatosk]

I was just skimming my notes from our struggles with getting PA last year. And someone at BCBS did send thru paperwork for an "emergency over ride" to enable Walgreens to send us a one month supply while we were waiting for our "predetermination request" to go through.

On a side note, I would ask your insurance company and doctor's office to send you copies of the forms they're requesting be filled out and what was submitted. The CF nurse faxed the info back to our insurance company the same day they received it, yet I was told insurance never received it, the wrong forms were sent, that I could find the correct forms online... Meanwhile someone else was saying the forms were received and I was just supposed to be patient with the process. Take down names, phone numbers, dates and don't wait to hear back....

 

[stephen]

As I've probably said before, after two years of no problems getting Kalydeco off-label, my first 3 month refill in 2016 was initially denied. However, my insurance did approve a 28 day supply to provide coverage during an appeal.

Once the appeal paper work was submitted, the denial was reversed in less than 48 hours.

I know the process can be very stressful.

 

[jricci]

Thought I’d give an update--As expected, prior authorization was rejected since I’m receiving Kalydeco off-label. My doctor wrote a letter of appeal and I received notification today that denial was overturned and Kalydeco was approved until July. I guess the whole process has to happen again in 6 months, but that’s ok since I don’t expect Kalydeco to stop working : )
I'm feeling very grateful and hoping and praying that everyone with CF will soon have a very effective treatment.

 

[Ratatosk]

Thank goodness! I just double checked our formulary list for any updates. Worry about enzymes as they're rather spendy. Nothing new, except a dispensing limit on Orkambi of 4 tablets per day. Er, isn't that what one is supposed to take. Have heard of taking less to start, but not more.

oh and my first drug refill for the year was pulmozyme. Fortunately there was a copay card or it'd be $2600 instead of $30

 

[stephen]

jricci,

Really glad to hear that you didn't have too much of a problem getting Kalydeco approved again. Hopefully getting it will never be a real problem.

My last 84 day supply was filled on November 16th and will be eligible for refill on January 20th. Hopefully it will go as smoothly as last year when it too was initially denied.

It would sure be nice if Kalydeco finally got FDA approval for Residual Function mutations. This would end some of the uncertainty some of us, who are taking it so successfully off-label, are experiencing.

To this end, I recently spent quite a bit of time on the phone with Vertex, trying to get any information on the status/plans of this effort. To say the least, it was extremely frustrating! While two of the people I spoke with seemed very sympathetic, they wouldn't even tell me if there was any public information available on the subject. I was told there were locations two websites, the FDA's and Vertex's, where I "might" find some useful information - but they wouldn't even if my search would be useless. I did spend quite a bit of time searching these sites but could not anything current.

If anyone has information on the current status of the FDA's approval of Kalydeco for additional mutations, please let us know.