amyloid pet scan and Medicare Advantage

Emauss

My DW (80) has just recently been (tentatively) diagnosed with Alzheimer's but need an amyloid PET scan for confirmation. We have UHC Medicare advantage and are told the diagnostic tool is not approved yet. Not sure what to do.

Start of a long journey.

Marta

you do not need a PET scan to diagnose dementia. That is done through neurocognitive testing. Beyond that, there is no point in getting a PET scan. It won’t change the outcome and would not impact care significantly.

Marta

jfkoc

I agree with Marta, Please see that a diagnosis is made following proper protocol. Lots about that online for you to read.

M1

the only reason to pursue a scan would be if it were required to approve one of the new drugs like leqimbe. Otherwise no point

Iris L.

I agree with the above. I had an Amyvid PET scan done which confirmed that I do not have Alzheimer's Disease. This scan was done via my participation in a clinical trial that allowed me to avoid the $6000 cost.

Iris

H1235

I would just be up front with the doctor. My insurance doesn’t cover this. Is there an alternative?

harshedbuzz

A couple of thoughts.

Did you get this information from your insurance company or is it hear-say? FTR, what physicians and their staff konw about insurance coverage is not always up to date as it's a moving target. My mom's retina specialist wanted to offer her a brand-new injection for her advanced GA but told us "Regular Medicaid will cover it, but your Aetna MAP won't yet." Mom was crestfallen. I was surprised as she's a retired teacher and has always had access to top-of-the-line care; she got dad a PET scan to differentiate between diagnoses on regular Medicare via her retiree supplement. We went home and I made some calls. Turns out her Medicare Part D provider does cover it through her preferred provider specialty pharmacy. TL;DR if you haven't talked with a patient "navigator" at your policy administrator consider doing so. If the answer is "no" and you can change plans, perhaps you opt to do that at the next open enrollment if you feel strongly about this.

Do you need to know this? Most dementias progress and are managed pretty similarly. FTD sometimes responds badly to ALzheimer's meds and a PET scan might be needed to access Leqembi. Dad did have a PET scan— his doctor wanted to differentiate between Alzheimer's and WKS (an alcohol-related dementia). The test showed features of both conditions so it didn't really change what we doing in terms of care.

Are you open to other testing? Would a spinal tap offer the information you need? Would you get more information from neurocognitive testing as Marta suggested? I'm in early stages of having mom worked up based on our shared concern about her recent lack of focus and memory lapses. We've done blood work and are doing a contrast MRI next week and an appointment at the memory center towards the end of the year. I don't know that I would do the PET scan going forward, although I might accept the neuro-cog testing for her.

We talked about Leqembi when it was first in the news because of our experience with dad. His former doctor was involved in the clinical trials and is often quoted in press about the new medication. Given the risks and benefits, I wouldn't encourage mom to try it given how little it seems to offer women specifically and the risks/inconvenience of the infusions.

Age plays into this. If he were much younger, the odds of it being something other than Alzheimer's would skew the risk/benefit in favor of a deeper dive.

That said, I can really appreciate the need of some people to feel as though they really need to know exactly what it is that is doing this to their LO. I am also such a person.

HB

Emauss

https://alzconnected.org/discussion/comment/210217#Comment_210217

I've been told certain medications require either a pet scan for approval with Medicare advantage

Emauss

Spinal tap is another option, but a pet scan is less invasive.

I'll have to look more carefully at medication alternatives.

harshedbuzz

@Emauss

"Certain medications" is likely Leqembi. This is an article (gifted link) that talks a little bit about what to expect from that medication. Given that it works best for white men, the need for twice monthly infusions, significant risks of brain swelling/bleeds, the co-pay (around $7K/year) and the very modest benefit are reasons I would not consider it for my mom.

https://www.nytimes.com/2023/07/06/health/alzheimers-leqembi-medicare.html?unlocked_article_code=1.vE0.B8o1.78q0ojlvnGPp&smid=url-share

I would also consider whether your DH is a good candidate for a PET scan which requires an IV tracer, an hour wait and a 30–60-minute procedure during which he must be perfectly still with his head inside a scanner. A lumbar puncture is minimally invasive but would only take 15-30 minutes. Availability might favor lumbar puncture in terms of scheduling sooner.

HB

Emauss

https://alzconnected.org/discussion/69310/amyloid-pet-scan-and-medicare-advantage

Follow up. The amyloid PET scan IS covered by medicare advantage, but many providers are not authorized for that drugs used, even though they are in network for PET scans. And yes, we are considering Leqembi so the test (or spinal tap) is needed. The copay of $180 (or so) will be my out of pocket. Waiting for an appointment now.

FWIW it took MONTHS to find out abut what is and what isn't covered. And why! The CPT code for the amyloid PET scan is 78814 if anyone needs that information

tigersmom

@Emauss , I am glad you got the go-ahead to have this done. But I want to warn you to be prepared for the whole thing to go sideways once you’re there, depending on your LO’s state of mind. As @harshedbuzz noted, there are lots of moving parts to this test. My DH was diagnosed after one in June of 2021. He was stage 4 at the time, and a physician, so he was no stranger to an MRI machine. He did not understand the process for injecting the radioisotope and refused to try on the head cage he would need in the MRI machine, so the first isotope expired and they had to send for another dose. The only way he would allow them to inject the second was if I sat in the tiny room with him (hey, thanks for the exposure to radioactivity!) When they finally put him into the tube he was terrified by the banging and clicking. The only way he got through it was with me clinging to his hand, hanging over the opening while he was in there. And we still had to end 10 minutes early when he just couldn’t take it any longer. As they slid him out, the impatient nurse snarled at me, “We’ll be lucky if any of this is useable since he moved around so much.” Well, they got plenty to make a conclusive diagnosis of mixed dementia (ALZ and vascular), though I and some of his doctors are not sure about the vascular part. Those images came at the tail end of the test. TBH, it was one of the worst experiences either of us have had with his disease. I hope that yours is better, and if your LO is more cooperative than mine,it may well be. Just don’t go into it expecting a smooth ride.

Emauss

https://alzconnected.org/discussion/comment/212880#Comment_212880

Thanks. Hopefully things will go well.