insurance coverage for Arikayce

Why do you think you need the Arikayce if you don’t have a positive sputum? Does your CT suggest your sputum has not culture converted? Arikayce is not a walk in the park so I would want to know I really needed it before starting it.

I was diagnosed via bronchoscopy and haven't produced a positive sputum sample since; my sputum samples seem to be mostly if not entirely saliva. I doubt they are reliable and the CT after six months of antibiotics shows slight improvement at best. That could be attributed to airway clearance, which didn't become part of my lifestyle until after the previous scan. So I don't feel confident that the current antibiotic regimen is working. I'm evaluating if it's possible to try Arikayce without getting another bronchoscopy now because I may want a bronchoscopy with biopsy next year, pending results of a follow-up CT.

What do your doctors say about adding Arikayce? Are you being treated by an NTM specialist? CTs are only a piece of the assessment and not all CTs improve with treatment, in fact many don’t, so you may not be using the right measuring stick depending on your circumstances. Cavitary disease is its own discussion but you haven’t mention if you have cavitary disease.

Good question, and doctors are pros at getting appeals approved. Like @bayarea58 stated Arikayce can be a PITA for some, however it's been an easy antibiotic for me-zero side effects. Here's what my Mayo doc sent me back in July:
Terri, You're still testing positive for MAI after 4 months on the three multidrug treatment, so I strongly recommended adding Arikayce once daily. You will stay on all treatment for at least 18-24 months after sputum testing is negative. This helps make sure
the MAI bacteria are cleared from your lungs.

So, see if your doc would send in scans, results, and notes for approval in order to get coverage for Arikayce. It's very expensive without insurance, however some people choose to pay out of pocket for it since it's a GREAT drug to convert to negative. But be aware that it'll be tough without sputum samples for evidence of bacteria. And, how will you know when you do convert? Keep us in the loop and wishes for good health, Terri

Arikayce runs roughly $15,000 a month so that is tough for most to cover without insurance.

WOW!! It is always astounding how much medical treatment costs in this country. No wonder so many are without medical care or go broke trying to get it.

@six5532one
Please keep trying to get sputum up & out with hypertonic saline nebs. I couldn't at first, I'm considered dry bronchiectasis, but I *kept trying and finally had success enough to get a small sample. Dr. McShane , a MAC specialist, told me this trick: mid way through the 7% neb, take a small sip of water to help soothe your throat & any cough spasm, then continue the rest of the 7% hypertonic saline neb. It really helps. Good luck

My dr office suggested I apply to The Assistance Fund for help with Arikayce. I filled out application and fortunately was approved. They mailed all the medication and supplies directly to me. Discuss the application process with your drs office. Good luck

I was diagnosed with MABC 11/24 and Arikayce was denied by my insurance. NJH recommended inhaled IV Amikacin in lieu Arikayce. I only tried it once at NJH and liked the fact it wasn't as viscous as Arikayce and could be nebulized without the Pari nebulizer. Currently testing negative without antibiotics but will use the IV Amikacin if the MABC comes back.

@jeanand3 I heard that we can't receive financial assistance from The Assistance Fund unless our health insurance plan has approved Arikayce. Did your health insurance approve Arikayce?