What do you know about gene testing and life insurance?

[BlsdMama]

So, in the latest turn of events, I may not be dealing with Lyme.

 

Turns out an aunt confirmed that the type of dementia Grandma had was frontotemporal dementia.  Turns out, FTD is closely linked with ALS. I went to ALS Clinic this week.  Up until now I had been asked if anyone in the family had ALS but never asked about dementia and especially what kind.  We have no one in our families that has ALS at all.  But, with the FTD link, they would like us to consider testing for c9orf72.  Genetic counseling has been ordered.

 

On the one hand, we would know.  I wouldn't go through any risk with PICC lines, ports, huge amounts of antibiotics.  

 

On the other hand, we would know.  I could be sure where this was headed (full blown ALS) but I don't know if I want to know that.  Worse, I would have to tell my family and extended family.  With a small family you can tell one person and not the other.  With a huge family, they (my aunts and uncles)  will know one way or another.

 

Moreover, there are people who fear that confirmation of a gene means confirmation of a pre-existing condition.  My family is going to *need* my life insurance, especially if that many medical costs are on our horizon.

 

Good gravy, this was JUST a limp -   A knee problem, an old car accident injury.

[Selkie]

:grouphug:  :grouphug:  :grouphug:

 

I'm sorry, what a tough situation. I would be hesitant to do it if it would jeopardize your life insurance.

[zoobie]

You won't be able to get new life insurance at this point, but all that you already have was purchased before you had any condition or any knowledge of any potential condition. I believe the genetic testing issue would be for something like knowing you had the genes for breast cancer, then purchasing life insurance, then dying from breast cancer. I don't think regulations have caught up with this.

[J-rap]

Your current life insurance won't be affected by new health problems or genetic testing.  You probably won't be able to get new life insurance once the current plan expires.  I agree with zoobie that life insurance has not yet figured out what to do with genetic testing, and I think it will be awhile.  It will be a tricky situation to figure out, because just because you have a gene doesn't mean you'll get the disease.

[BlsdMama]

Your current life insurance won't be affected by new health problems or genetic testing.  You probably won't be able to get new life insurance once the current plan expires.  I agree with zoobie that life insurance has not yet figured out what to do with genetic testing, and I think it will be awhile.  It will be a tricky situation to figure out, because just because you have a gene doesn't mean you'll get the disease.

 

 

So I have two plans on me.  The first purchased years ago (like 18) is term and through DH's work.  But we are only offered a small amount.

 

This last fall when we went to sign up for additional, we found out we could not increase it to what we wanted.  We had recently started banking with USAA and we called them for a quote.  The quote was lower than we expected and so we purchased a policy.  I did have to go through a physical, bloodwork, etc.  I did have to disclose that I had been seen for a knee issue and that I was going to see a neuro.  We disclosed everything - the appointment, etc.  We weren't too concerned because I had had a car accident about 20 years ago and banged up that knee.  It had bothered me off and on for years and we thought it was catching up with me.  Anyway, the only thing they wondered was why so much - I had no income.  But the why was because I was back in school, I wasn't likely to get cheaper later, and we have a bazillion kiddos, kwim?  

 

Well, fast forward to right now.  What we thought was surely Lyme may end up to be familial ALS despite ZERO family history. The c9orf72 gene can cause dementia OR ALS and they really don't know why it reacts one way in one person or a different way in someone else, kwim?  Because of my symptoms, if I tested positive for c9orf72, we could really be pretty certain this was the mutation manifesting.  I have just recently been diagnosed with "probable" Primary Lateral Sclerosis - a slightly more "mild" version of ALS.  You end up fully paralyzed but not your diaphragm, so you can continue to breathe.  The probable is because 90% turn into ALS.  So I am on a clock to not turn.

 

If I test positive we could try to get into clinical trials.  None have *ever* had any success but....  

 

On the other hand, I would know it.  Right now I have optimism.  I think perhaps this is really Lyme or maybe just PLS and maybe it will stay PLS.  With the gene *and* the symptoms that would be very unlikely.  On the other hand, antibiotics have been shown to hasten ALS and Motor Neuron Disease.  I think I would then NOT get the Lyme treatment if I had the gene and not risk speeding up the clock.  I am a very slow progressor - it is still just in my leg for the most part and I could live another 5-10 years even if it was ALS with this slowed progress.  

 

But I would not want to risk life insurance.  So it would not be a risk since I've had the policy for about a year now?

[maize]

Since you had no knowledge before buying the insurance you have done nothing to invalidate your contract. Genetic testing should not change that.

 

Pull out your contract and read it if you are unsure.

[QueenCat]

 

 

 

But I would not want to risk life insurance.  So it would not be a risk since I've had the policy for about a year now?

 

First, so many hugs to you right now. I would carefully read the policy before doing anything. I'd be too scared that doing the test could make it a pre-existing condition for both life insurance and health insurance should the laws change.

[prairiewindmomma]

There was a law passed in 2008 called GINA, which says that health insurance companies can't discriminate against genetic testing results (but life insurance, disability insurance, long-term care insurance can).   Since your policy is already in place, you should be good to go---but what are your renewal terms? That's where I'd want to look at the contract.

 

 

[Guest]

Are you worried about your kids also having the gene and not being able to access affordable health insurance and life insurance in the future?

[Joyofsixreboot]

Hugs and prayers. I know that seems so inadequate.

 

Sent from my SAMSUNG-SM-G900A using Tapatalk

[kbutton]

This shouldn't invalidate the life insurance you already have, but you might want to talk to an insurance broker, preferably the one that sold you the policy. 

[Laurie4b]

So I have two plans on me.  The first purchased years ago (like 18) is term and through DH's work.  But we are only offered a small amount.

 

This last fall when we went to sign up for additional, we found out we could not increase it to what we wanted.  We had recently started banking with USAA and we called them for a quote.  The quote was lower than we expected and so we purchased a policy.  I did have to go through a physical, bloodwork, etc.  I did have to disclose that I had been seen for a knee issue and that I was going to see a neuro.  We disclosed everything - the appointment, etc.  We weren't too concerned because I had had a car accident about 20 years ago and banged up that knee.  It had bothered me off and on for years and we thought it was catching up with me.  Anyway, the only thing they wondered was why so much - I had no income.  But the why was because I was back in school, I wasn't likely to get cheaper later, and we have a bazillion kiddos, kwim?  

 

Well, fast forward to right now.  What we thought was surely Lyme may end up to be familial ALS despite ZERO family history. The c9orf72 gene can cause dementia OR ALS and they really don't know why it reacts one way in one person or a different way in someone else, kwim?  Because of my symptoms, if I tested positive for c9orf72, we could really be pretty certain this was the mutation manifesting.  I have just recently been diagnosed with "probable" Primary Lateral Sclerosis - a slightly more "mild" version of ALS.  You end up fully paralyzed but not your diaphragm, so you can continue to breathe.  The probable is because 90% turn into ALS.  So I am on a clock to not turn.

 

If I test positive we could try to get into clinical trials.  None have *ever* had any success but....  

 

On the other hand, I would know it.  Right now I have optimism.  I think perhaps this is really Lyme or maybe just PLS and maybe it will stay PLS.  With the gene *and* the symptoms that would be very unlikely.  On the other hand, antibiotics have been shown to hasten ALS and Motor Neuron Disease.  I think I would then NOT get the Lyme treatment if I had the gene and not risk speeding up the clock.  I am a very slow progressor - it is still just in my leg for the most part and I could live another 5-10 years even if it was ALS with this slowed progress.  

 

But I would not want to risk life insurance.  So it would not be a risk since I've had the policy for about a year now?

 

:grouphug: Sorry that you have to deal with this situation at all. 

 

I don't see how it would be any different than if you bought the policy and got cancer several months later. As long as you disclosed everything, you are probably fine unless there is a clause in there that the policy doesn't cover things that show up in the next ____fill in the blank___ period of time.

 

If there is some kind of clause like that, it seems to me that getting the testing would be irrelevant to the question of your policy. You have symptoms and information now that could make the unwanted diagnosis a possibility. If, the worst case scenario happened, the insurance company would be looking for when the disease manifested. They couldn't go back on what you had already told them--no one suspected anything at that point, including them. They sold you the policy with full knowledge of what you had then. 

 

So I would make the decision on the basis of other considerations such as whether getting antibiotics for Lyme might affect your outcome not about the insurance. For piece of mind, you could check with your state insurance commissioner. 

 

I really, really hope it is Lyme's too.  :grouphug:

[Granny_Weatherwax]

I am saddened after reading your post. I was hoping beyond measure that you had found the root cause (Lyme disease) and were being treated appropriately. I am sad to learn that you are still seeking a diagnosis and determining what course of action to take. I know nothing about genetic testing and the implications it will have on insurance eligibility but I am thinking of you and want to send a big hug. :grouphug:

[Storygirl]

I don't have answers about the insurance question.

 

But I understand the quandry about whether or not you want to know whether you carry the gene. We have Alzheimer's in my family. Not only my mother and grandmother and most likely my great-great-grandmother, but also more distant cousins (there are no close cousins on that side of the family). One of those cousins said once that everyone who doesn't die early ends up with Alzheimer's.

 

So I kind of know that I will likely get Alzheimer's. I assume that I will. Yet I don't want the genetic testing to know for sure. But sometimes I think it would be wise. But then I remember that my mom did everything that experts suggest to do to avoid getting it, and got it anyway when she was only in her 60s. So knowing it doesn't mean I can do anything to avoid it.

 

Ugh. It's so hard. I'm sorry that you are faced with these kind of questions. There are no easy answers, and it is all painful, and I'm so sorry. I'm praying for you.

[J-rap]

I'm so sorry you're dealing with this.  But, you disclosed everything you knew when you got the insurance.  I'd carefully read over your policy, but I don't think it's any different than having a heart attack 6 months after getting your insurance that was completely unexpected. 

 

My dh had a massive, life-altering stroke one month after he got life insurance.  Up until then, he was in perfect health as far as he knew, with only chronic (as in daily) migraines, which he was completely honest about when he got his insurance.  There was nothing more he could have done.  He had no idea that in one month, an artery that had been affected by the constant fluctuations of 20-years' worth of migraines would result in a dissection.

 

He still has that life insurance today.