International availability of an Amyloid PET Scan

MelissaPru

I'm a new participant in this group and am hoping to find an answer to a pressing question. My husband's doctor has explained that he needs to obtain a diagnosis of Alzheimers to be eligible for a new FDA approved drug. He is a little reluctant to undergo a spinal tap. Apparently he can't receive an Amyloid PET scan in the United States unless he is signed up for a research program. The proposed course of treatment is already approved so it is past the research stage. Is anyone aware of an international clinic where he can receive an Amyloid PET scan? Thank you.

Iris L.

Melissa, I got an Amyviid PET scan via a clinical trial from Indiana University.  This was at least seven or eight years ago.  I was recommended by my neurologist.  I will try and see if I can find some contact information for you.

I never had a spinal tap.

Www.brainhealthregistry.org

Try this site.

If you provide more details, another member's LO may be participating in this investigative drug. Also check the Clinical Trials message board.

Iris

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MelissaPru

Thank you for your responses. The drug that has been proposed is lecanemab therapy and is FDA approved. Apparently an amyloid PET scan is only available in this country if my husband is enrolled in a research program. This is why we are searching for a way to achieve an AD diagnosis without a spinal tap. This may mean we need to look to resources outside the country. Again, we appreciate any information.

harshedbuzz

MelissaPru-

I understand access to this medication comes with hoops to jump through.

Would the entity approving the medication for your DH accept an Amyloid PET Scan from a site outside of the U.S.? Will you be paying out-of-pocket for the test and the medication?

HB

MelissaPru

At this point we haven't discussed how the cost for treatment will be covered, but the doctor we are consulting with has indicated he is open to accepting results from an amyloid PET scan from a clinic outside the country. I would need to verify with the doctor when/if we locate a clinic outside the country that is willing to perform the scan.  We will be covering the cost of the scan out of pocket so cost will be a consideration, but we don't have a diagnosis yet so that is an important first step and one we are willing to finance. We are just beginning this journey.

Iris L.

Questions to ponder:

Some clinical trials are for patients at the MCI stage.  What stage is your DH in?

Would he be getting the medication or possibly a placebo?

What are your objections to a spinal tap?  It can rule out normal pressure hydrocephalus.

These are some questions to think about, and possibly discuss with the neurologist.  I asked these questions myself when I considered a clinical trial. 

Iris

MelissaPru

Thank you Iris for your kind response, but part of our dilemma is that his doctor is not recommending a clinical trial at all. He is recommending a drug therapy that has already received FDA approval. There is absolutely no chance he will receive a placebo if he pursues the course recommended by his doctor.   

My understanding is that my DH would not be a good candidate for the drug if he wasn't still high functioning. His doctor has informed us that current research indicates lecanemab will not reverse existing symptoms. The hope is that it will prevent further deterioration.  My DH has mild MCI and an extensive family history of Alzheimers (father, uncles and aunts).  We don't currently have a diagnosis of Alzheimers and that is the hurdle we are trying to overcome.  His doctor is willing to accept either a spinal tap or an amyloid PET scan. An amyloid PET scan is currently only available in this country if you are participating in a clinical drug trial. 

He is already stressed by the situation and is fearful of a spinal tap. The idea of someone withdrawing fluid from his spinal column is worrisome to him.  This is why we are trying to find out if anyone on this group has any information at all about availability of amyloid PET scans outside of this country. 

Please let me know if I should be posting this question to another group. I am very new to this research and am blundering along to the best of my ability.

Iris L.

Thank you for clearing up my confusion about the clinical trial.

I was a pediatrician in my career and I performed many lumbar punctures.  Most were to diagnose meningitis.  The procedure of an LP in adults is a bit different, because it includes measuring spinal pressure.  It is done in a procedure room at a hospital or surgi-center under surgical precautions.  A small amount of fluid is removed.  He could have some mild sedation but still be awake, or he could be asleep.  The area is anesthetized, so he would not feel pain.  IMO, and this is not a medical opinion because I am not his doctor, I would question the doctor more about the spinal tap, because that seems to me to be easier than going to another country for an amyloid PET scan.  Again, this is just my unsolicited opinion.

This is the correct board for your question.  On the Clinical Trials board are questions of a more scientific nature.  You could pose the same question on both boards, because some members who read the Clinical Trials board do not read this board, yet they might possibly have some info that we do not have.

You might also call the Helpline or call an Alzheimer's Disease Research Center to ask your question.

Iris

MelissaPru

Thank you, Iris, for sharing your insights regarding a spinal tap. Truly appreciate it. My DH is reading these posting and he thanks you as well. He is slowly beginning to reconsider a spinal tap. 

I called the helpline and they kindly sent me directory of international Alzheimers associations and told me to try these excellent discussion groups. I'm methodically going through their recommendations.

However, I have new happy information since my last post. I could have sworn we were told that an amyloid PET scan was only available in this country through clinical trials, but I now believe that this imaging is only covered by Medicare if the patient is enrolled in an approved clinical trial. Two completely different things. I'm calling around and I've already been told by one hospital in this country that they will do the scan if they have a prescription and we are willing to pay for it.  I've also sent a note to the doctor my husband is working with asking him which of the two tests is actually more conclusive. Once we have all our ducks in a row my DH will be able to make truly informed decision. This is all a little new to us. We have both been blessed with excellent health so are a little new to navigating a complex medical situation. 

Thank you again Iris and thank you to everyone who has taken time to this post. I think our immediate problem has been resolved. 

Melissa and Ted

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BadMoonRising

Based on a quick internet search, it appears that the Amyloid PET was approved by the FDA for clinical use in 2012. Medicare, however, will not cover the cost of the scan unless it is part of a research study. If your husband's doctor orders the scan and your husband is willing to pay out of pocket, I'm confident he can have the scan in the U.S.

Cherjer

My DH had a spinal tap when he was going through all the tests to identify AD. He was 73 and had no problems with this procedure. Unfortunately, 7 years late he is in late stage AD.

Iris L.

Victoria2020 wrote:

https://www.ideas-study.org/For-Patients

Thanks for the update, Melissa.  Thank you, Victoria.  The IDEAS study is the one I had my Amyviid PET scan with, at no charge.  Otherwise I was quoted about $6000 self-pay.

I'm glad things are coming together for you and Ted.

Iris

MelissaPru

Thank you so much Victoria2020 for posting the link to the PET scan research project a second time. I can't believe I missed it the first time. I'll be calling today to determine whether my DH can enroll. 

Thank you also Cherjer for sharing your husband's experience with a spinal tap. So very, very sorry to hear he is late stage now. Sending our kindest thoughts and best wishes to you both.

This message board is a treasure. Thank you all again.

MelissaPru

Hi Victoria2020, 

I have an update on my effort to get my husband enrolled in the Ideas clinical study. I called the research coordinator at his physician's hospital and was told that they hadn't recommended this clinical trial because they were currently only taking participants of color. I believe she specifically indicated black and latino candidates were being accepted. My DH doesn't qualify on this level so he isn't eligible. Unfortunate, but thank you for providing the suggestion.

We are inquiring into another study named Detect-AD.  Apparently, this study offers both an amyloid PET scan and ongoing monitoring through electronic devices over a three year period. I believe the purpose of the study is to determine whether smart watches and other types of monitoring devices can to be used to successfully track the progression of AD. I'm not sure access to an amyloid PET scan is guaranteed through this study, but will know more next week. Crossing our fingers.

Dio

Melissa, is there any Alzheimer's Disease Research program near you? If so, you may want to consider enrolling your husband. We just did (recommended by his neurologist's) so that we have access to various tests, including spinal tap, skin biopsy, PETScan for TAU, amyloid PETScan, neuropsych evaluation and other tests...all free as part of the research. It's not a clinical trial. You need to answer a questionnaire to see if your husband is a qualified candidate for the research. Good luck!

In our case, his neurologist will have access to all the test results and is looking for specific biomarkers to determine or narrow down which dementia(s) is the culprit. Of course, regardless of the cause, there's no cure. However, it will affect which medications to prescribe to treat his symptoms and which to avoid. 

Jgirl57

Melissa, so glad you are doing your research to make informed choices.

My HWD also had the lumbar puncture/spinal tap with no problems

and the results were: “pathology consistent with Alzheimer’s”.  That actually eased my mind because I then knew what we were dealing with.  My HWD was able follow the verbal instructions during the procedure but could never remember why he had it done but that was ok with me.

Best wishes as you continue on this path.

JJ401

Lecanemab — The drug is FDA approved, but it was approved on an accelerated basis, so right now Medicare will only cover the drug in a clinical trial. The FDA allows drugs to come to market if they are safe and effective, while Medicare pays for drugs it deems reasonable and necessary. So without being in a trial, you would need to pay for the drug out of pocket.

When I Google the cost, the number I get is $26,500 per year.

If I could afford the drug, and the doctor will administer the drug with a spinal tap confirmation,  I’d try to convince my husband to do the spinal tap before I’d consider going out of the country to get the PET. 

https://www.cms.gov/medicare-coverage-database/view/ncacal-decision-memo.aspx?proposed=Y&NCAId=305

https://www.nature.com/articles/d41586-023-00030-3

MelissaPru

Thank you all again for your considerate responses. Your assurances have helped my husband to agree to a spinal tap if necessary. We have access to an excellent neurology department at OHSU in Portland, Oregon.  We are currently waiting for results on an ApoE genetic test. My husband's doctor has indicated he will not be a good candidate for Lecanemab if he tests positive for the ApoE4 gene. We are aware the drug isn't currently covered by Medicare and that the treatment is very, very expensive. I know everyone on this board will understand when I say I will encourage my husband to get treated regardless. Care for late-stage AD is also very expensive (in more ways than one).  My DH is truly in excellent health and could have many happy years ahead, so we are inclined to spend the money on treatment and hope we don't end up paying for care as well. We should have results on the ApoE test in a couple of weeks and hopefully a diagnosis in a month or two. This first step is a big one. I am grateful he is brave enough to take these tests and face the outcome.