Aboveallislove
Super Moderator
Thanks! And I also really like the details of the process because it will help me be prepared for when the 6-11 study is done (and I'm sure helps others too!) Can't wait for you to get your hands on it!!
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Post Your Orkambi Updates
- Thread starter Aboveallislove
- Start date
Thanks! And I also really like the details of the process because it will help me be prepared for when the 6-11 study is done (and I'm sure helps others too!) Can't wait for you to get your hands on it!!
TreasureGoddess
Member
Still waiting..... reading lots of encouraging updates from those feeling better already! Sure hope this helps all these families!
T
trghpu1994
Guest
Ours is supposed to arrive tomorrow
Diana Blue
New member
Is anyone on here on CCS in California?
State is delaying approvals until they can research and write protocols.
That sounds like it may take awhile. State director's assistant said I should get Vertex to cover it and Vertex rep was, of course, thinking CCS would cover right away.
State is delaying approvals until they can research and write protocols.
That sounds like it may take awhile. State director's assistant said I should get Vertex to cover it and Vertex rep was, of course, thinking CCS would cover right away.
Aboveallislove
Super Moderator
Vertex won't cover that. I'd call the cff lawyer who handled similar issues in I want to say Louisiana for kalydeco ASAP and have her get involved to push it forward.
Is anyone on here on CCS in California?
State is delaying approvals until they can research and write protocols.
That sounds like it may take awhile. State director's assistant said I should get Vertex to cover it and Vertex rep was, of course, thinking CCS would cover right away.
Aboveallislove
Super Moderator
Here's a link that shows the issue with kalydeco. http://nassauotb.blogspot.com/2014/07/life-is-cheap-like.html
the state eventually settled and agreed to pay...but if cal is saying vert x should pay I foresee them dragging feet and strongly recommend contacting Beth sulfian spelling? Her firm is listed in the article...but call through the cff page.
heres the link https://www.cff.org/Living-with-CF/Navigating-Insurance/Finding-Support/Know-Your-Rights/
id stress that the state is telling you that vertex should cover the drugs and ask for assistance.
the state eventually settled and agreed to pay...but if cal is saying vert x should pay I foresee them dragging feet and strongly recommend contacting Beth sulfian spelling? Her firm is listed in the article...but call through the cff page.
heres the link https://www.cff.org/Living-with-CF/Navigating-Insurance/Finding-Support/Know-Your-Rights/
id stress that the state is telling you that vertex should cover the drugs and ask for assistance.
Update: Waiting on Prior Authorization to go through then it will be filled by Accredo (oh, joy...sarcasm). Copay with the GPS assistance will be $15 per month. Hoping to get it by the 1st of August so my daughter can be on it for a month before she leaves for college.
Aboveallislove
Super Moderator
Oh, Teri, I have tears in my eyes thinking what it must mean to be able to send your precious daughter off to college with this drug...I say so often with the research moving so quick that when we're ready for DS to go to college we hope to send him off with "normal" genes...well, as "normal" as they can be given his parents!!!
Diana Blue
New member
Thank You Aboveall isLove.
Thank you for this info! Starting to reach out now.
Diana
Here's a link that shows the issue with kalydeco. http://nassauotb.blogspot.com/2014/07/life-is-cheap-like.html
the state eventually settled and agreed to pay...but if cal is saying vert x should pay I foresee them dragging feet and strongly recommend contacting Beth sulfian spelling? Her firm is listed in the article...but call through the cff page.
heres the link https://www.cff.org/Living-with-CF/Navigating-Insurance/Finding-Support/Know-Your-Rights/
id stress that the state is telling you that vertex should cover the drugs and ask for assistance.
Thank you for this info! Starting to reach out now.
Diana
Diana Blue
New member
I've just spoken with Beth Sufian. She strongly urged all of us to put pressure on Vertex to cover Orkambi until state insurance figures out what they're doing. And, that it will be a battle since Vertex did not cover Kalydeco for the young girls with CF in Arkansas.
if there is anybody on here in California and would maybe like to talk about a strategy for deali with Vertex, I'm interested. I'm calling/em everybody pertinent I can find.
thanks,
diana
Lawson's mom 18 cf, dd508
if there is anybody on here in California and would maybe like to talk about a strategy for deali with Vertex, I'm interested. I'm calling/em everybody pertinent I can find.
thanks,
diana
Lawson's mom 18 cf, dd508
My 18 year old received his Orkambi on Saturday. We worked with the Vertx rep and had to go thru Acredo. Tricare covered with no special authorizations with $20 co pay for retiree dependent, yay! He says he thinks he is seeing a difference in being able to get stuff out after a treatment, but I think it's too early to tell for sure. I will update after more time has passed. Mary
Medicaid update. Just had an appointment with my doc, she's saying that Florida medicaid isn't even acknowledging the drug until some meeting in December. Some other people mentioned Arkansas and California doing similar things, so I guess that's just the situation with medicaid at the moment.
My doc said she'd personally try advocating for me with medicaid, as my lung function is basically in the toilet and she'd like to get me on it sooner rather than later. Vertex can't even offer assistance if insurance won't even acknowledge it. It probably won't pan out, but that's all I got at the moment.
My doc said she'd personally try advocating for me with medicaid, as my lung function is basically in the toilet and she'd like to get me on it sooner rather than later. Vertex can't even offer assistance if insurance won't even acknowledge it. It probably won't pan out, but that's all I got at the moment.
Aboveallislove
Super Moderator
I'm so sorry to hear that. I have no idea how that Medcaid systems work such that they can ignore an FDA approved drug until they get around to reviewing it. Hopefully, your doctor can push to have it covered before the normal "review".
You likely already know but in case not, here's a link to a study for those with impaired lung function which might be a quicker way to get you on the drug. [
https://clinicaltrials.gov/ct2/show/NCT02390219?term=vx809&rank=11
Hugs.
UOTE=Oboe;1040767]Medicaid update. Just had an appointment with my doc, she's saying that Florida medicaid isn't even acknowledging the drug until some meeting in December. Some other people mentioned Arkansas and California doing similar things, so I guess that's just the situation with medicaid at the moment.
My doc said she'd personally try advocating for me with medicaid, as my lung function is basically in the toilet and she'd like to get me on it sooner rather than later. Vertex can't even offer assistance if insurance won't even acknowledge it. It probably won't pan out, but that's all I got at the moment.[/QUOTE]
You likely already know but in case not, here's a link to a study for those with impaired lung function which might be a quicker way to get you on the drug. [
https://clinicaltrials.gov/ct2/show/NCT02390219?term=vx809&rank=11
Hugs.
UOTE=Oboe;1040767]Medicaid update. Just had an appointment with my doc, she's saying that Florida medicaid isn't even acknowledging the drug until some meeting in December. Some other people mentioned Arkansas and California doing similar things, so I guess that's just the situation with medicaid at the moment.
My doc said she'd personally try advocating for me with medicaid, as my lung function is basically in the toilet and she'd like to get me on it sooner rather than later. Vertex can't even offer assistance if insurance won't even acknowledge it. It probably won't pan out, but that's all I got at the moment.[/QUOTE]
Prior Auth went through, approved for one year. Now we are waiting for Accredo to finish processing the Rx. My daughter will be home from camp on Saturday, so hopefully we can get delivery by Friday so she can start this weekend.
Edited to Add: Just got off the phone, delivery is scheduled for Friday. Yippee!
Edited to Add: Just got off the phone, delivery is scheduled for Friday. Yippee!
A
Allansarmy
Guest
Approval went through Aetna. Just need ti get blood work for LFTs then in the mean time get my son's CF clinic to put son's name in with Vertex for financial help. Then get RX to CVS specialty pharmacy. Once we get it I will post back.
EmilysMomma
New member
congrats! I have Aetna also and it was approved within days and cvs Caremark sent it overnight.Approval went through Aetna. Just need ti get blood work for LFTs then in the mean time get my son's CF clinic to put son's name in with Vertex for financial help. Then get RX to CVS specialty pharmacy. Once we get it I will post back.
My office must be bugged. Went home for lunch and received a call from Walgreens Specialty Pharmacy confirming the script, going over what BCBS will cover --- with Vertex GPS, we have a $15 copay for a 3 month supply. Shipping for delivery via fed ex signature required. So hopefully will get it at my office tomorrow morning. Then I was put on the phone to visit with a pharmacist who went over possible side effects and how to take the medication. So hopefully we'll start Friday morning!