How can I get acalabrutinib?

[ttomo]

Hello everyone. I see my CLL expert on Monday and believe that he will finally be suggesting treatment after 12 years on watch and wait. I’m mutated and have none of the bad markers. I have recently been severely neutropenic with slowly falling hemoglobin (9.9). Platelets have fallen twice into the 80s but are now generally around 115. I am wary of Ibrutinib because I have borderline hypertrophic cardiomyopathy (concerned about Afib). Some of you have tales about getting acalabrutinib offline and getting insurance to approve it. Can someone please explain this process to me so that I have more information when I see my doctor on Monday? Thank you so much. I am new to this forum and have learned so much in the past few days.

[Cllcanada Top Poster CURE Hero]

Your doctor will know, if he is up to speed with new treatment access. It was approved for MCL last fall, so should be able to be had, off label.

You doctor will need to present your case to your insurer for coverage. I know a number of patients who have received it second line, not sure about first line however.

Its something your CLL specialist would pursue.. not the patient...

~chris 🇨🇦

[ttomo in reply to Cllcanada]

Thanks very much. Guess I will see if my doctor is up to date in his treatment knowl!

[Hidden]

if your in usa there is nothing stopping a doctor from prescribing any drug even if it is off label. However the physician will be more liable if something goes wrong. the first thing is to see if calquence will process on initial physician rx. Pharmacies do this all the time . If the prescription processeses thru your ok. If it rejects at the pharmacy then the doctor will have to get a prior approval for you. the pharmacy usually calls your doctor and tells him what to do to do this. Then it's up to the doctor to submit convincing documentation to get the approval

[Cllcanada Top Poster CURE Hero in reply to Hidden]

Yes , but who's paying? Its the insurer that's the blockage... sometimes the drug company will have compassionate use programs.

~chris 🇨🇦

[uihwki in reply to Cllcanada]

If you're in the USA and on commercial insurance the drug company will cover any expense that the insurance doesn't. My doctor's admin did the paper for me and there is no income restriction. I've not incurred any expense for the acalabrutinib.

[ttomo in reply to Hidden]

Thank you!

[Davemich]

I am on Acalabrutinib after many several other treatments, so not first line. I am in the US, my doctor had to fight with my insurer to cover since it is not FDA approved yet for CLL. It required a great deal of work on his part, but was finally successful. So your doc will have to pursue this. Best of luck!

[ttomo in reply to Davemich]

Thanks so much!

[Bill1288 in reply to Davemich]

Davemich: I was just turned down by insurer. Dr. was trying to switch me from Imbruvica as I have been having serious side effects. See Dr. Tuesday so will discuss with him and see where we go now. Thanks for your input.

Bill1288

[uihwki]

I'm in the USA. I believe that in most cases you have the right to appeal your insurance company's decision. I've successfully done it a couple of time. You have to do your research and be able to present it to the insurance company. No guarantee but it's worth a try.

[tryandtry]

Try the AZ&ME website (A-Z is the manufacturer). They have programs, including free pills if you meet their income (low, but not poor) and other drug expense requirements (I'm in the US - no idea about other countries).

Getting the drug prescribed "off label" was not a problem here in the US, but as Chris said, insurance company payment may be hard to get.

Gary

[Cllcanada Top Poster CURE Hero in reply to tryandtry]

Here is the link... for anyone interested

AZ and Me

azandmeapp.com