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Anyone taking Arikayce? At $13,000 a month, how do you pay for it?

In: General Discussion
11 5282
J

Hope someone out there can help. I’ve been on heavy doses of 3 antibiotics since Jan of 2017 for MAC. Sputum still showing positive and showing on CT 3 weeks ago.

My MAC doc prescribed Arikayce as an addition but the insurance company has denied coverage. I filed an appeal on Friday and found out the cost today.
With insurance (Medicare part D through SilverScript a CVS partner) it will be over $6,000 a month.
Without insurance it will be over $13,000 a month!!!
Has someone else out there been through this?
I also have 2nd hand smoke COPD, had upper left lung lobe removed in 2005 for aspergillosis and upper right lung lobe removed in 2016 for 2nd hand smoke lung cancer. My cancer Doctor is monitoring 3 lesions and says they should shrink on Arikayce if they are MAC. If they don’t shrink then probable cancer. So I need the Arikayce for this too.
I have multiple sclerosis and don’t heal well so he doesn’t want to do a biopsy on hard to reach lung lesions that may be MAC.
I need advice.Thanks for reading.

Latest Activity: June 29, 2020
9
11 Replies

Replies

K

Jenny,

Hello! Have you checked out the link below?https://www.arikayce.com/arikares-support/

Latest Activity: September 17, 2019
5

Comments

J

Yes, thank you.
I reached out to them. The government prohibits pharmaceutical companies from helping anyone on Medicare prescription part D with expenses.  So they can’t help on the copay but they are going to provide a nurse to come show me how to do the Aikayce inhalation, if I can get it.

Latest Activity: September 17, 2019
6
K

That is great glad you can do that.  

Latest Activity: December 24, 2019
2
K
Latest Activity: September 17, 2019
9
C

I didnt realize how expensive Arikayce is, but my doctor wants me to possibly go it next month. Me, personally?? I am choosing not to use, because of the risk of lung/breathing issues after use. Is there another aminoglycoside you can use? I have really been digging into the research, and there are different types of these antibiotics that may be more cost effective. I am looking into Streptomycin via injection, myself. I really hope this helps.

Latest Activity: December 24, 2019
4
K

Hello! Have you reached out to Arikayse support?

https://www.arikayce.com/arikares-support/

Latest Activity: December 24, 2019
7

Comments

B

I found help with them.  They approved my application but then sent a letter that they were auditing some accounts so I had to send more info.  Hopefully this will not affect my coverage.  If so, I will have to seriously reconsider.

Latest Activity: June 1, 2020
4
S

@BmblebeeThe audit decided I was no longer eligible.  Not sure what I am going to do now

Latest Activity: June 29, 2020
1
K

Bmblebee,

Hello! I hope that it works out for you. The cost of medications, supplies is an issue for most patients.

Latest Activity: June 2, 2020
8
S

Have they tried to get you approved for the Assistance Fund?  That is great if you qualify.  Regretfully I didn't.   My costs is $600 a month after Medicare and insurance.  I have learned that amakacin would be $20 a month.  Wondering if it would be good.  Comparison studies are not definite.

Latest Activity: June 29, 2020
S

Have they tried to get you approved for the Assistance Fund?  That is great if you qualify.  Regretfully I didn't.   My costs is $600 a month after Medicare and insurance.  I have learned that amakacin would be $20 a month.  Wondering if it would be good.  Comparison studies are not definite.

Latest Activity: June 29, 2020
S

Have they tried to get you approved for the Assistance Fund?  That is great if you qualify.  Regretfully I didn't.   My costs is $600 a month after Medicare and insurance.  I have learned that amakacin would be $20 a month.  Wondering if it would be good.  Comparison studies are not definite.

Latest Activity: June 29, 2020
S

Have they tried to get you approved for the Assistance Fund?  That is great if you qualify.  Regretfully I didn't.   My costs is $600 a month after Medicare and insurance.  I have learned that amakacin would be $20 a month.  Wondering if it would be good.  Comparison studies are not definite.

Latest Activity: June 29, 2020
S

Have they tried to get you approved for the Assistance Fund?  That is great if you qualify.  Regretfully I didn't.   My costs is $600 a month after Medicare and insurance.  I have learned that amakacin would be $20 a month.  Wondering if it would be good.  Comparison studies are not definite.

Latest Activity: June 29, 2020
S

Have they tried to get you approved for the Assistance Fund?  That is great if you qualify.  Regretfully I didn't.   My costs is $600 a month after Medicare and insurance.  I have learned that amakacin would be $20 a month.  Wondering if it would be good.  Comparison studies are not definite.

Latest Activity: June 29, 2020

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