Any danger in sharing APOE e4/e4 status

[Vikingman]

with my insurance company or other health care providers?

[aphorist]

IMO:

Healthcare Provider = OK.
Anyone else not bound by HIPAA or a duty of confidentiality (NDA, etc.) = No.

[slacker]

I tell my healthcare providers about my ApoE4 status if I think it is relevant to the care they give me, and ask them not to document it in my health record. Do not know if this actually happens.

[Rainy]

Hoo boy, this is a subject near and dear to my extremely risk-averse heart! I have told my children absolutely not to get tested with 23andme or any related service. Our health records are increasingly centralized and open to hacking, as recent breaches have shown. At some point in the near future I strongly believe there will be widespread denial of insurance coverage. Because I already have long-term care insurance I tell my doctors, especially naturopathic docs, about my E4/E4 status so they can more effectively advise me. Since both of my parents and 3 of my 4 grandparents died of Alzheimer's I focus on following the protocols in this terrific forum. That said, I got tested with 23andme because I specifically wanted to know my status for the extra impetus toward optimal health habits. All the best to you in this journey, Vikingman!

[Nords]

with my insurance company or other health care providers?

In the U.S., there's the protection of federal law:
"The Genetic Information Nondiscrimination Act (GINA) of 2008 protects Americans from discrimination based on their genetic information in both health insurance (Title I) and employment (Title II). "
https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination

It probably works as well as any other federal law where enforcement hasn't been widely tested yet. Note that insurance companies could still "discriminate" in life insurance and long-term care insurance.

Long-term care insurers are moving away from earlier pricing models to hybrids of life insurance with a long-term care rider. Instead of paying out at your death, it could start paying the same value for long-term care. It's too early to tell whether the insurance companies are pricing the policies appropriately, but at least there's less incentive for the companies to discriminate.

When I was my father's conservator (Alzheimer's), I didn't publicly discuss my APOE status. I don't think there was any reason (let alone motive) for the probate court to dismiss me from my conservator's appointment, but I didn't want to volunteer any excuses for them to elevate their scrutiny.

I think there's more danger in *not* sharing our APOE status with healthcare providers. You'd want a doctor to be aware of it just like any other risk factors in your genetic situation or family history.

In the last two years I've gone public in a couple different places, and the public reaction has been undetectable:
https://apoe4.info/forums/viewtopic.php?f=2&t=4183

https://the-military-guide.com/retirement-planning-disability-caregiving-estate-planning/

[Vikingman]

Thank you Nords! I will be cautious but look for an opportunity to share with the right person when I find one. I have not been to a doctor in 19 years so I think it is time to visit one soon.

[NF52]

Thank you Nords! I will be cautious but look for an opportunity to share with the right person when I find one. I have not been to a doctor in 19 years so I think it is time to visit one soon.

Ah yes, it is time, my healthy friend. I had to find new doctors for the first time in more than 19 years when we moved out of state. Intimidating, but ultimately rewarding when I found an internal medicine doc in a small practice who was described on reviews as a great listener. Sure enough, he spent 45 minutes each with my husband and me on our first visit, and has consistently listened, thoughtfully shared options and been a better diagnostician than some specialists we have seen. He's not an ApoE 4 expert, but he is an expert at seeing patients as partners--and at keeping my ApoE 4 status out of my online portal records at my request. And he was able to steer both my husband and me to useful medications and carefully chosen diagnostic tests for significant issues and away from unnecessary procedures and interventions.

Good luck in your quest!

[Vikingman]

That sounds great NF52. I will hopefully find an internal medicine doc that is similar!

Thank you,

Vikingman
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