Post Your Orkambi Updates

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Aboveallislove

Super Moderator
Favor: Could folks post their updates on Orkambi? When they get a script. What was required to get it? Any process for approval? Did you work with Vertex folks to assist? How long before in hand? Any improvements?
Thanks!
 
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TreasureGoddess

Member
Right now our medical team has prepared by getting all documentation in (genetic testing results to make sure doulble DF 508, and insurance info for our patients. I'm waiting to hear when my son will get the script filled. Our nurse practitioner and cf docs are calling in the script now and have said they will run interference for us with insurance companies. Crossing my fingers that it's soon and affordable!
 
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Ratatosk

Administrator
Staff member
Our doctor told us to call when approved and they'd call in a prescription. So I did so on Thursday. Checked the insurance website to see if it was on the formulary list. It was listed as a specialty drug, unlike Kalydeco it didn't have PA (Prior approval) as a notation. I did check the Vertex/Orkambi website, which indicated they'd work with one's pharmacist; however, our pharmacist didn't think they would let him distribute it citing past experiences where the drug company prefers large national chains and mail order pharmacies.

Will keep everyone updated. We have met our deductible for the year; however, just depends upon how our insurance company decides to classify it -- non-formulary, formulary, specialty with PA or no PA, noncovered....
 
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TreasureGoddess

Member
Ratatosk, check with your CF team and see if they can contact their Orkambi counselor. Each state has its own to help those with the double Delta F508 genetic type get the medication as well as they have a copay assistance plan! Our nurse practitioner for the cf team sent over all my son's info and gave me a contact phone number to follow up with them. I spent about half an hour on the phone yesterday and we have everything set up for the first step now. The Orkambi counselor is contacting our insurance companies to see what their coverage will be and also which specialty pharmacy will be approved to distribute the medicine. He said some insurance companies don't have it added to their medication lists since the drug was just approved, but he thinks within the next 2 weeks all the major insurance companies should have this ready to go. I'm waiting till early next week to get a call back to see what our status is. I do know my son has to have fresh liver levels (blood test) as they want recent labs to compare as they'll be tested each 3 months for the first year and less often each year going forward. We also have an eye appointment scheduled but that wasn't mandatory. We are supposed to watch eyes closely as there have been reports of cataracts and eye exams can help monitor any changes once on the medication.
 
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Ratatosk

Administrator
Staff member
When I called the clinic on Thursday after it was approved by the FDA, the nurse knew nothing about Orkambi. Guess I caught her off guard, as we'd been told by his doctor to call once approved to start the ball rolling. Am planning to contact the clinic again early next week if we don't hear anything.

I did see it was added to our insurance's specialty drug list on July 1st. Double checked that as we had a rude awakening when Pancrease was reformulated to Pancreaze and was never (still hasn't been) added to their formulary list. So we'd have had to come up with a couple grand as those enzymes are noncovered. Fortunately he was able to switch to creon. We met our deductible in January, so we haven't had to pay for any scripts, tests, office calls or copays since.

Liver tests were done last month as part of his annual blood tests and he gets regular eye exams every year. Friend of mine's daughter in on Kalydeco and mentioned the potential for eye issues last year.
 
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TreasureGoddess

Member
Awesome! I'll try to see if there's a general number anyone with questions can call, and also find out for your situation too. WAHOO for a real progress on medications for kids in their lifetimes. I get chills every time I think of all those Great Strides walks I went on thinking I was just helping someone's grandchildren of tomorrow. I was actually helping my very own kid and these other kids & adults RIGHT NOW!
 
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Oboe

New member
I hadn't heard anything from my doc for the past week, so I gave 'em a call to ask about it. Turns out they were already working on it, so that's cool. They asked me if I had documentation of the screening that determined double delta. I didn't but it got done by the previous caseworker at the office so they're calling her. That's all I know at the moment. I fully expect it to be a fight though; I'm on medicaid. They wouldn't even pay for Bethkis despite it being a cheaper TOBI.
 
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trghpu1994

Guest
Our clinic has been on top of it. Got all necessary paperwork in. Spent 20 minutes on phone with Vertex going over some things. Now waiting for insurance and them to ship
 
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Allansarmy

Guest
Doctor's office called my 19 year old son yesterday. They said the Rx has been written but expect a long process. He will probably get his Liver Enzymes done next month.
 
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occupyjapan

New member
My doctor sent me forms to fill out and fax in on Monday the 6th. I sent them in Tuesday the 7th. The nurse called back Wednesday morning and said he'd written a prescription and sent it to my insurance. My insurance called a few hours after that and said they'd approved it. Foundation Care called a few hours after *that* and said they'd got the prescription and were just getting things arranged to ship it and would call back the next day (Thursday). They called Thursday morning and said they'd shipped it out that day and it'd be here Friday. UPS delivered it Friday afternoon and I started on it at Midnight on Saturday.

http://i58.tinypic.com/1zg9m36.jpg Here's a (bad; my phone camera sucks) picture of the box!

I've been on it for a little over half a week. Super easy and quick to get. I've had more issues getting my insurance to cover hypersal in the past than this.
 
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Oboe

New member
kenna2 said:
Has anyone been able to get this through Medicare or Medicade?
Click to expand...

Just talked to Vertex yesterday and they are currently in talks with my medicaid provider. I should know something in a day or two and will let you know how it goes.
 
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DjFunkyFife

New member
occupyjapan said:
My doctor sent me forms to fill out and fax in on Monday the 6th...
Click to expand...
Though important, i edited out the details...
...and I started on it at Midnight on Saturday.
Click to expand...

I don't understand this... I talked to my clinic and they said I had to come in to fill out paper work (won't send it to me) then do blood work, then they'll send in the prescription... Then one it comes in I have to come back in for 'education' then get on it. That process is going to take probably till September!

Sounds like the polar opposite of your experience!
 
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kenna2

Guest
Oboe said:
Just talked to Vertex yesterday and they are currently in talks with my medicaid provider. I should know something in a day or two and will let you know how it goes.
Click to expand...

Thank you so much! I appreciate it
 
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occupyjapan

New member
DjFunkyFife said:
Though important, i edited out the details...


I don't understand this... I talked to my clinic and they said I had to come in to fill out paper work (won't send it to me) then do blood work, then they'll send in the prescription... Then one it comes in I have to come back in for 'education' then get on it. That process is going to take probably till September!

Sounds like the polar opposite of your experience!
Click to expand...

I'd just had a clinic visit a couple weeks prior and made sure to have them do a liver function test. Perhaps that expedited things? I dunno. I, too, am shocked at how easy it was to get.

Also, I am having a very (*VERY*) positive experience with the drug, but am not going to go into details here because I don't want to get people's hopes up since they may not experience the same thing. Needless to say, I am definitely an outlier based on the trial results.
 
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Ratatosk

Administrator
Staff member
I'm waiting to hear back from the clinic. They'd instructed us to call when approved and they'd write us a script. Vertex assistance suggested we have the clinic fill out their enrollment forms. We've met our deductible for the year, Orkambi is listed on our insurance specialty drug list without prior approval -- though past experience this will probably change. I have a script for ds; however, neither our local pharmacy nor the national mail order pharmacy we had to use in the past for Tobi is one of the 9 specialty pharmacies authorized to provide it. DS had his liver function tests last month.
 
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TreasureGoddess

Member
Ratatosk, I talked with the counselor at Vertex and he said that if people call their number, they can only help if the CF clinic has sent them the paperwork and they will refer people back to their clinics. Sounds like you have things moving so YAY! We love Foundation Care Pharmacy (specialty mail-order) so if that's on your list, you may want to think about them. They've helped me above and beyond battling insurance companies and re-filing paperwork, etc plus are reliable at getting meds to us. I'm hoping our insurance will allow us to use them and not have to use Accredo as we do for my son's Pulmozyme. That's at least a 20 minute HOLD TIME every time I have to call to get a prescription sent out, billing issues, etc.

We're still in limbo waiting on insurance ok.
 
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