Arikayce vs Amikacin

@marmee26 That's a great question. It will be interesting to here what other members have to say. I recently learned that there is an amikacin liquid available that can be placed in the nebulizer, which might be more effective than the oral version. Arikayce is a specially formulated liposomal version of Amikacin, but for many people it is expensive. If you are not on Medicare, Medicaid or VA assistance, you may be eligible for help to pay for Arikayce.

Thank you for your response Sue. I am, in fact, on Medicare. Meeting with my pulmonologist this afternoon. If I thought there was a much greater chance of conversion with Arikayce, I would make that difficult choice. Nevertheless, at $3,293.88/month I have to weigh my options very carefully. What is it they say, “ Your health is your wealth” Indeed. Even my Doc thought that copay was outrageous.

Arikayce is the inhaled form of Amikacin. You can also get Amikacin delivered through an IV but according to my ID doctor the IV method has higher toxicity. I started on the IV Amikacin and then was told the bacteria was not susceptible so he switched me to Arikayce. I never really understood that since it is still Amikacin. Insmed offers assistance with the copay but it won't apply if you are on any type of government insurance. That seems so unfair, that you can't get that assistance because you're on Medicare 😔

Thank you @mjb24. My doctor offered IV Amikacin today at my appointment. We are considering our options… yes, it does seem rather unfair- especially because choosing the government insurance is required once a person turns 65. Failure to do so will result in being financially penalized. The private insurance I had prior to age 65 was very good. Oh well.. I remain grateful for so many other things, I’ll choose to focus on those. Be well.

I was on IV amikacin for four months after I got a bad reaction to rifabutin ( high liver enzymes) . I had it 3 times a week and was going to the infusion place. I had a port( a PEP line I think it’s called which was put in the hospital setting) in my arm and it was very convenient except I got allergic to the dressing that covered the port. Otherwise I felt stronger. True for about 2 hours after the infusion I was tired and I believe I lost some hair but It helped me a lot and I believe that was the time I converted to being MAC negative. The only thing to remember is please make sure they check you kidney and liver function- it was done once a week. This was my experience. Good luck to you. If your blood work is fine you should be all right.

Hi Mary,
My Pulm. prescribed Arikayce back in May, 2023 but told me we would have to wait a few months for approval. I started taking Arikayce in July, 2023. Medicare covered a portion and then the Assistance fund picked up the rest and I believe the Co-pay was picked up by my supplemental insurance or the Assistance Fund. Bottom line is that I think the forms the doctors have to fill out must be done with care and coverage can be possible with Medicare.
Flo@jFrankie160

@frankie160 It is possible your supplemental plan covered it, I just went back to Insmed's website and it still says the co-pay assistance program is not valid for prescriptions covered by or submitted for reimbursement under Medicaid, Medicare...
They do mention changes made to Medicare Part D and a program called Extra Help but I'm not familiar with that program.
I am concerned about the cost also because I plan to retire next June. I think the best bet is to call Insmed and verify the information.

Mary, you sign up for a program called ARICARES and are assigned a very knowledgeable coordinator. They know all in and outs on insurance and authorizations

Mary@mjb24,
Yes, it would be interesting to check back and make certain how the Arikayce was paid for when time permits. I was nebing Arikayce 7 days a week since July, 2023. I have been taken off Arikayce last March,2024 even though the best practice suggested to continue with Arikayce for 1 year from your first negative sputum for MAC. Both the ID Doc and Pulm agreed that Arikayce outlived its usefulness in my case based on some severe symptoms (see below) that started in December, 2023 and almost immediately disappeared 5 days after stopping the Arikayce.
Hope all will be smoother for you as you continue on your journey.
Onward,
Flo@Frankie160
PS
My severe symptoms were constant serious voice and throat issues from the beginning with crazy non stop coughing, and acute shortness of breath.

Thanks Rick. That's a great idea. I do have an Arikares coordinator since I am on Arikayce and they are covering the $200 copay. I will give her a call to see if she can provide more info on what is available when someone is on Medicare.