I Failed the Test

There’s an old joke which goes something like this…

Little Susie was in first grade and was having difficulties with some of the subjects. At the request of the teacher, her parents took her to a child psychologist to check her mental capacity. The psychologist determined that Susie was fine, just a little developmentally delayed and that she should catch up with her classmates by the end of the school year.

The next day, two of Susie’s classmates were talking to each other. Johnny said, “Did you hear about Susie? They gave her a test to be an idiot and she failed!”

 

[Letter F]

On Friday, I traveled to Philadelphia to learn the results of the PET scan I had back in January that was checking the level of amyloid plaque in my brain as part of the qualification stage for testing a drug that gives hope to those suffering from Alzheimer’s disease (see here for further details). As I met with one of their chief researchers, I was informed that I did not have sufficient plaque in my brain to qualify for the study. (I met with Dr. Sanjeev Vaishnavi – see his bio here – he is one of only three on their staff who is qualified to discuss PET results.)

Thus, like Susie above, I took a test to gauge my likelihood of having Alzheimer’s and I failed.

Dr. Vaishnavi asked me how I felt about hearing this. I responded that I was a little disappointed as I was hoping that my participation would help to advance our knowledge of this disease and help to find an eventual cure for it. So, for now, I’ll have to just continue with the other non-drug-based studies that I am a part of.

He then asked if I wanted to find the results of the genetic testing that I had gone through – specifically the information about my APOE (apolipoprotein E) gene. I had signed an optional consent form last year asking for that information. He informed me that I had E3-E3. (There are three versions of this gene (called alleles) – labeled E2, E3, and E4 – and everyone has two copies, one from each parent – for more information, see https://www.nia.nih.gov/health/alzheimers-disease-genetics-fact-sheet). The E2 allele may provide some protection compared to the E3 allele, but the E4 allele may increase your risk of getting the disease.

I then commented that I found it interesting that since the Clarity-AD trial on lecanemab which was concluded in September had noted that the E4 allele also increased the risk of ARIA (Alzheimer’s-Related Imaging Abnormalities), in the form of micro-hemorrhages, and that people would need to take these risks into account if they wanted to move forward in- the AHEAD study, that even if they had not signed the consent form asking if they could know their APOE results, that they might have to be given the information anyway.

We also chatted briefly about some of the videos I had seen where clinician’s views on relative risks led them to recommend or not recommend lecanemab for an individual.

I guess that I must have greatly impressed him. When he left the room, he told Francisco (the project manager for the AHEAD study) that he could re-enter the room and also said to him that he’d like to have me in other studies as I knew more about these subjects than anyone else he’d ever encountered before. Francisco relayed that to me as he escorted me out of the building and made arrangements for my ride (via Lyft) back home.

So, for now, I’ll have to be content with my involvement in the ABC, MTL, and Web-APT studies. But I’ll continue to be open to other studies for which I might still qualify even through I have no evidence of Alzheimer’s, nor am I likely to get it in the future since it takes 10-20 years to manifest itself after beginning to get a buildup of amyloid plaques in the brain.

I’m a little disappointed that I “failed” the test, but happy that I’ve impressed the “teachers”!