Terrified of my symptoms

[swalker]

I am sorry to hear about your father's genetic test results. Have you been tested yet (or do you even want to be tested)?

You mentioned open enrollment and later supplemental insurance. I am not sure what you mean by each of these, but you mentioned going through your workplace. Note that open enrollment can also apply to Obamacare, and to some Medicare situations.

Be cautious about any insurance you get through work. That often terminates when employment terminates, You will want to be informed about any possibilities that insurance obtained through work can be converted so it is still in effect when you leave work.

I have worked at a few companies in my career. In each case, the default has been that life insurance lapsed the day I left the company and healthcare also lapsed (unless I paid for COBRA coverage) when I left. If you are counting on having insurance (especially life insurance) that stays in force after you leave your current company, then you would want to consider privately purchasing a policy. I did this many years ago (30 year term life insurance policy), and am very, very glad that I did.

And, remember that if you eventually get diagnosed with ALS, you will almost certainly leave the workforce. So, insurance coverage outside of work is something to consider very seriously.

Having adequate life insurance is something I recommend to everyone (I always recommend term life policies). That is my recommendation even if there is no concern about a terminal disease. What is adequate life insurance? To me, it is the amount those left behind will need to make up for your financial contributions after you are gone.

For life insurance, it is unlikely that you will be able to purchase additional life insurance once you are far enough down the diagnostic path. If you don't have adequate life insurance, I would encourage you to consider putting off diagnostic steps until after you have secured appropriate life insurance.

My final thought about life insurance is to be very careful NOT to make any statements that could cause them to eventually come back and deny a payout. That means you need to truthfully answer all their questions. It does not mean you need to volunteer answers to questions they do not ask. The details will vary by carrier, but in general, you don't want to give them an excuse to deny a payout if they do additional investigation.

For health insurance, if you are eventually diagnosed with ALS, then when you leave work, if you meet the work requirements for social security and are no longer working, you will qualify for SSDI and Medicare (at least that is the case under the current rules).

Many on this forum, including me, eventually wind up on SSDI, Medicare, and one or more Medicare Part B, C, D, etc. policies.

Steve

 

[3chris057]

Hey Steve,

I would love to get genetic testing and I have the option too, but I want to make sure I have the best insurance in place first.

I want to get as much supplemental insurance as possible. Right now, I am holding off on diagnostic testing until I get it. I want to make sure I have a life insurance policy and other insurance I pay extra for that would still be good if I left work. I don't really know how to go about attain it though. Do you have any recommendations of where i can privately purchase a policy?

 

[Clearwater AL]

As you wrote above....

"Do you have any recommendations of where I can privately purchase a policy?"

Over three pages you have shown that you have and demonstrated good computer
and communication skills.

Maybe that's something you need to apply these skills to helping yourself...
being you have left work? now giving YOU the time to do the research needed.

Finally, you've been told in several replies you do not have signs of ALS by
very ALS knowledgeable members/moderators along with being only 29 years old.

Just saying.

 

[3chris057]

Al,

Yes, I certainly am still capable of looking up insurance policies. I figured, since Steve seemed knowledgeable it would be worth a shot asking him if there is a specific plan that he recommends.

With the recent discovery of the C9 gene mutation with my dad, I wanted to update the thread. I am listing to the doctors and it does concern me that they want to follow up so soon, but my last post was simply trying to get more info on the C9 gene and insurance only.

 

[Clearwater AL]

Chris, I'm just miffed at your over focus on ALS. You've been told you don't have MND or ALS
by Neurologists and Specialists. Like one reply said, "Do the Happy Dance."

"My records at Mayo only show my EMG which I have posted above and says I don't have MND."
That was followed with a BUT.... An EMG from MAYO... many here wish they could go to Mayo.

You spoke to your HR lady but you doubt what she said.

Yet you are so consumed with this ALS thing but you don't want to do anything until you
want it to be paid for first yet you are still working... I guess. Maybe I missed something
but if you are still working wouldn't the insurance you have now cover it... like hopefully
everything previous?

How many Neurologists and ALS specialty facilities have you seen or been to?

Again, I believe you have the same ability to research the C9 gene as any one here and
Nikki has pretty much covered it too. Maybe she can add more.

I know you're concerned but your 'doubt' to so many things isn't helping you.

Again, just saying.

 

[3chris057]

I have lost multiple family members to ALS and have seen what it has done to my dad as he was the CALS to my grandma.

I have 100% trust in my doctors at the Mayo and am lucky to live close to the hospital. This is the first specialist I have been too. I did go to my local neuro who performed my first EMG which was completely clean, but he hadn't seen ALS patients. 1 month later, I had another emg which showed denervation as stated above at the Mayo. I love my doctor at the Mayo, but I would have preferred he said I didn't need a follow up in such short time, but he is someone I trust. I guess my doubt comes from the fact that he didn't just tell my I am fine and he doesn't need to see me anymore. Until then, I have been enjoying my life even as these symptoms persist but now we have discovered the gene in our family that has caused devastation.

I simply want to get extra insurance that can help out my family in case, the worst were to happen. The HR lady at my company is still in training and is only knowledgeable about the insurance they offer. I want to go the private route. Regardless of ALS in my family history, I would still get this. As steve said, he advises everyone to get it. My company has had a lot of layoffs, and as steve said, my if I were to get let go, I would be without insurance unless i opted for Cobra which is very expensive.

I am also trying to get info for my dad who has the confirmed gene so he can do studies for pre-FALS and myself and isn't very tech savy.

Of course I can do my own research, which I do, but it's nice to have people like Nikki who provided me with a great list of places that do Pre-fals and is knowledgeable about C9. She seems to know more about C9 then most people.

I am sorry if I upset you for some reason, but I only post on here if I think it is useful. My next appointment is in November and my focus is on enjoying life to the fullest, but when my dad was just told he has a damn near 100 percent chance to devolop ALS/FTD by age 80, you can imagine the shock that is. I try to be more of a lurker around here and only ask questions if I think they are worth the time for people to answer. I take advantage of the search bar on this to gain knowledge as well, but as time goes on, there are new developments.

I do appreciate your responses though AL. I am have been doing my best to move past the "doubt" and just follow the diagnostic steps and trust the doctors which is my focus.

Thanks,

Chris

 

[lgelb]

If you lost your job, your lower income would likely qualify you for an ACA policy through healthcare.gov, and job loss is a qualifying event. That would be guaranteed issue coverage under the current ACA in force.

I would also advise you to exercise honesty on any life and disability insurance you apply for, as much is databased these days and any false statement or omission can lead to a loss of coverage and forfeited premiums.

Best,
Laurie

 

[Nikki J]

I hope your dad is doing ok. Confirmation of positive gene status is devastating. Is he asking to do these studies or are you somehow influencing him? I believe they are terribly important but they are not easy physically or emotionally. You need to be very motivated and committed but they are still hard. If he does want to consider DIALS in Boston coupled with the FTD study and perhaps the imaging study to help with expenses

 

[3chris057]

Laurie- I would never lie. I am a very honest person, but I am gonna pursue Life insurances before the my next appointment in November.

Nikki - My dad does want to participate in studies, but can't afford the trips it would take to with hotel and travel costs. My dad has a great ability to only focus on the present and has taken the positive status fairly well. I think the fact he was told its 100% penetrant has scared him a bit. I will let him know about the DIALS in Boston.

Thank you both!

 

[Nikki J]

If he is close to Mayo ask them. I know people who have done ac9 study at 2 of the other ones. In both cases they were relatives of patients. I have never seen it listed elsewhere. They might have the FTD study too.

 

[swalker]

Chris, I don't mind at all you asking for information on how to get insurance and the kinds to get. While you don't have ALS, you certainly have been much more affected by it than most folks. You know that your father has tested positive for the C9 gene, and that cannot be an easy thing to deal with for multiple reasons.

I think you can be reassured that if you do have the C9 gene, you are unlikely to develop ALS for many years. There is no certainty in life, but the statistics show that being diagnosed at a young age is unlikely if you have the C9 gene.

Those observations frame the discussion about insurance. The following are my opinions. I have a bit of experience in financial matters, so perhaps have some background that gives me insights into these matters that could be useful. It is imperative that you do your own research about all of this and really understand the ins and outs of it.

Also, I live in the US. Some of the things below apply only to people in the US.

Before deciding what kind of insurance you need, you need to have a financial plan. How much money do you really need to live. Who depends on you for income. How long do you expect them to have to get by on your savings/retirement after you are gone. To me, this is much easier than it sounds like. Some pretty simple math in a spreadsheet can help you figure out answers to these questions.

Buying insurance is not intended to be a money making proposition for you or your heirs (on average). Insurance companies are in business to make money. They do so by having very capable statistical models about how long they expect you to live, go without being disabled, etc.

Remember that insurance is a pooled risk scheme. Be sure you understand what that means. Essentially, you are paying more than you can expect to receive in benefits, on average. You pool your risk with the risk of many other folks. The statistical likelihood of you having to make a claim are low enough that the insurance company will be willing to issue you a policy.

My comments about insurance apply to anyone, regardless of their concern about a terminal illness. If you are not adequately insured, then it is important to change that soon.

There are 3 types of insurance that I encourage you to consider: Disability Insurance, Life Insurance, and Medical Insurance. In the US, most people have insurance through their employer. While this is OK for as long as you work for that employer, I encourage you to think about the day you will leave your employer to switch jobs or go on disability. Often insurance coverage will stop when you leave your employer.

Disability Insurance:

Disability insurance is critically important, in my opinion. It is expensive insurance because the odds of becoming disabled (at least temporarily) far outweigh the odds of dying. If you have disability insurance through your company and become disabled, that disability insurance will usually continue (it did for me).

Given your concerns about ALS in your family, you should consider purchasing disability insurance on your own. You can do this through an insurance broker. There are only a few providers in the US, and UNUM is one of the major players. My experience with UNUM has been good.

There are disability policies that only provide coverage if you cannot do any work at all (much like SSDI). That means you do not qualify for payments if you can still flip burgers. Other, more expensive policies provide coverage if you cannot do the same kind of work you were doing when you became disabled. This is an important distinction that you need to understand.

Also, if you pay disability insurance premiums with after tax dollars, any benefits you received are not currently subject to income tax at the federal level. Income tax rules on disability payments vary by state, so be sure to understand the rules where you live.

Most disability policies reduce their benefit dollar for dollar for any money you receive from another insurance source, such as SSDI. Don't assume you will get your full policy disability amount plus SSDI. That is highly unlikely to happen. Also, you may find that the disability insurance only pays until your social security full retirement age.

Life Insurance

Life Insurance is not for you. Rather, it is for those you leave behind who depend on the income you were making or the services you provided.

Also, Life insurance becomes prohibitively expensive as you get older. The result is that many people decide not have have life insurance when they retire (kids are gone, house is paid for, and retirement is fully funded, so why have life insurance). Others may decide to have life insurance in retirement. For example, if you have a pension that stops when you die, what will your spouse do? You can use life insurance to fill this gap, though there may also be other options.

Oddly enough, it may be surprisingly important to have life insurance on your CALS (should you become a PALS). If they die, you will need additional money to provide the round-the-clock care they were providing, and that will not be cheap!

There are two main types of life insurance policies: Term and Whole Life. Virtually all credible financial people recommend Term life insurance. About the only folks who recommend Whole life policies are those who are selling them and stand to earn a large commission from them. You need to truly understand the differences between these before you make a decision to buy life insurance.

How much life insurance do you need? You need the amount it takes to sufficiently replace your lost income for however long that income would have been needed. If you die when your kids are young, you will want to have sufficient coverage to pay for the rest of their upbringing. If they have already left home and made a life for themselves, you may not need to leave anything for their care.

Many sources tell you to have X times your salary in life insurance. The reasoning is that if you die and your spouse/kids need your income for another 10 years, then you should have 10 times your current salary. This does not consider the effects of inflation, nor does it consider that your spouse may remarry.

Be sure to consider that if there are kids, your spouse probably would have a hard time working full time while raising the kids without you being around. Consider the financial needs for this when deciding how much life insurance you need.

You gain a lot of freedom by having life insurance yourself rather than through your employer. If you need to change jobs, it is nice not to have to be constrained by the kind of life insurance your new employer offers.

Note that virtually any good-quality, affordable life insurance plan will require that you be in good health. As you age, the opportunities for you to have health events that disqualify you from such plans increase drastically. Getting life insurance when you are young protects you against being denied in the figure.

I specifically recommend a long duration term policy. I have a 30 year term policy that had been in place for about 15 years when I was diagnosed. The premiums are the same today as when we purchased that policy. I am very likely to die before the 30 years is up, so we now have a predictable annual cost for insurance that will very likely be of great benefit to my wife when I am gone. It has allowed us to spend a bit more money now, knowing there is a high likelihood the coffers will be replenished by the life insurance payout.

You will want life insurance from a top rated company (check the AM Best rating) that has the financial stability to ensure they will be able to pay out when the time comes. Paranoid folks buy policies from several companies, in case one fails.

I think you can only make a rational decision about life insurance after you have developed a sound financial plan.

Medical Insurance

There are several ways to obtain insurance, though those options will change as laws and regulations change. You can get insurance through work, the ACA, Medicaid, Medicare, or through a normal commercial plan.

You will probably have insurance through your employer until you turn 65 or become disabled, at which time you will likely be covered by Medicare (this assumes you qualify for social security...not everyone does).

The main alternative to this would be if you have a need or desire to purchase insurance through the ACA (Obamacare).

You might not have much choice about insurer. For insurance through work, they will dictate the insurer. Where I live, there is only one insurer that provides an ACA plan. If you use Medicare, then they will be the insurer, though you can currently buy supplemental policies from a variety of companies.

Medicare is pretty complex, but I would not worry to much about the details now. It will likely be many years before you qualify for Medicare and the rules will undoubtedly change between now and then.

That is a lot more than I intended to write! I hope that you and other folks who search the forum find the information of some value. My intent is not to directly answer your questions, but point you in directions that may be valuable as you start to research and understand the convoluted world of insurance.

Steve

 

[3chris057]

WOW!!!, I really appreciate you for taking the time to do this Steve. You broke it down perfectly and this is a great starting point for me and will make research easier.

- Chris