If anyone could assist me in what to do with the health insurance application...i'd appreciate it greatly! I'm at-risk and currently undergoing the genetic pre-symptomatic testing process (3 apts) 1- just a consulation (already completed), 2-blood draw (not completed), 3- test results (not completed).... I don't have any health insurance as of yet... on the application and after talking to an insurance agent, i would have to disclose that i'm currently undergoing the testing process which would be considered under the medical treatment/medical advice section. But because the pre-symptomatic testing process is a personal decision and not necessarily "medical treatment or medical advice", what kind of ground do i have to stand on in that regard? Also the insur. agent mentioned that there is a question on: " are you currently undergoing a testing process prescribed by a doctor". She said that even since it wasn't prescribed i would have to disclose that I am anyway. This is all after i said i was just seeking information and would not be requesting an application, just so i could see what the whole process is, and if i would need to disclose that info.(testing). She also said that if i do put down that im currently going through a testing process, the insur company will want to wait and see what the results are...well if they see a positive result for HD, i'll be turned down....if i "lie" on the application, i could possibly later on down the road lose that insur. because of the fact that when and if i do start showing symptoms and have to go to the doctor, theyll be checking up on all of that i imagine. Isn't there something about genetic discrimination and insurance i thought i heard somewhere? If anyone has any advice or help it would be awesome....it's hard enough going through the testing, and have to worry about all this junk.
Thanks! Zach

Zach,

I hope people at risk for HD read this post before testing. Testing has a hugh risk if insurance is not in place (including medical, life, disability and long term care insurance). I wish I had good news for you about your insurance situation. I would quickly call another insurance agent and ask for insurance applications for the different policies you want. Each insurance company has a different application and different set of questions. Insurance applications also vary depending upon what state you live in. You can call your state government and ask for what department regulates insurance. You can then ask that department what an insurance company can and can't do. An attorney with experience with insurance might help as well. My gut tells me that I would get a policy before receiving the test results.

Genetic discrimination is different then a diagnosis. I recall that some states have laws that don't allow genetic discrimination but once you test for HD and if the test is positive then I don't think you are dealing with genetic discrimination - you are dealing with being diagnosed with a fatal disease and many if not all insurance companies will treat that as a pre-existing condition. I would seek advice from the state you live in and an attorney. Good luck.

Mark

I still don't quite understand how all of it works, but I was able to get my life insurance. Being that the first visit is just a consultation and you're making up your mind whether you want to be tested or not (after that visit, you do not have to be tested if you don't want to be), and you haven't made an appointment to get the testing done, then you've not started the process yet, so why put that you're going through the process if you've only gone through consultatoin and not through the testing yet? My huntington's counselor said it was a good idea to go ahead and get the life insurance whether i was planning on getting tested or not after the consultation visit. Also, if you pay for the testing yourself, it will never show up in your medical record according to the ones who tested me at Yale (You can use an alias and you do not use your social security number), so you shouldn't have to worry about them taking the policy away because they should never know about it until the HD symptoms actually occur. I do agree you need to try to get everything set up before going to get your blood drawn for the test. I waited a little bit after I got my insurance to get tested; however, I paid for it myself, so no one other than me and those that tested me will ever know what the results are unless I choose to disclose that information to someone, which I won't. This also means, however, that it would not be a good idea to disclose it to your primary care physician until the symptoms start occurring if you test positive as it would then be put into your medical record and your insurance company would have access to that. Having the gene does not mean you have it right now, it means you will develop it at some point, so until you do develop the symptoms, i wouldn't mention it.

Zach!

I have to urge you STRONGLY not to procede with the testing process until you have all of the insurance you'll need in place!

Anti-discrimination laws only apply to employment and housing. They don't apply to insurance.

An insurance company can refuse to provide you with insurance if they know of your HD status. And if they give you insurance, and take your money for it - they can later deny you coverage.

You need to get all of the insurance you'll need PRIOR to getting any test results. Then you'll have to carefully read the policies as to "pre-existing conditions" - and make sure that any given time periods elapse, before you go ahead and get your test results.

I know it's a pain, but it's extremely important!

JL

Zach,

I forgot to mention what some of the above postings did. Don't tell your insurance agent, primary doctor or employer ANYTHING about being at-risk for HD. Keep it out of your medical file by paying cash for the test and use a fake name and social security number. As jl says, please get all the insurance you want prior to testing. The one post mentioned life insurance but I don't see life insurance that important assuming you are single with no kids. I think medical insurance, disability insurance and long term care insurance are three very important (and unfortunately expensive) policies. Once the policies are in place then consider proceeding with testing.

Mark

I was using the life insurance as an example as I already had my medical insurance already set up before I went for consultation. But you are right, mark, medical, disability and long term care are definitely more important and do need to be taken care of before testing.

Life insurance, too!

I'm not doubting that you were able to GET life insurance - I'm just saying that it's possible you might not have been successful in making a CLAIM on it. They can refuse.

Since you're still alive and posting on this message board, I have to assume that you've made no claims on your life insurance. Therefore, you've no idea whether or not your insurance coverer might reject it.

Don't assume that just because an insurer accepted your application, and has been taking your money - that you're covered! They can refuse coverage for various reasons. And believe me, insurance companies will refuse coverage for any reason they think they can get away with!

Look VERY carefully at the insurance contract. I can't stress this enough!

Life insurance, too!

I'm not doubting that you were able to GET life insurance - I'm just saying that it's possible you might not have been successful in making a CLAIM on it. They can refuse.

Since you're still alive and posting on this message board, I have to assume that you've made no claims on your life insurance. Therefore, you've no idea whether or not your insurance coverer might reject it.

Don't assume that just because an insurer accepted your application, and has been taking your money - that you're covered! They can refuse coverage for various reasons. And believe me, insurance companies will refuse coverage for any reason they think they can get away with!

Look VERY carefully at the insurance contract. I can't stress this enough!

Isn't it awful that we pHDs and at-riskers have to worry about this crap?!? How come insurance can't do what it's meant to do without all of these stipulations. It makes me quite ticked off. Thank you for allowing me to vent.

Aud

JL-

I want, and need to keep my apts on schedule...it's WAY too HARD to wait any longer, or re-schedule--- i think it would create more havoc and send me over the edge. On the other hand with the insurance there are two questions that present like this:
1- "Has anyone had medical advice or treatment by a doctor, chiropractor, psychologist, or therapist or any health care professional within the last 5 years?"

2- "Has future surgery, diagnostic testing, or medical treatment been recommended for any person listed on this application?"

With the first question since i started the consultation/testing process already would that be considered medical advice? If i answer no, would i be lieing?

With the second question the diagnostic testing wasn't recommended by anyone, i chose, If i answer no to that, would i be lieing?

Those are the only two question that could possibly falter my ability to get insur.

Also do you recommend that i get LTC? Is it necessary?
Thanks JL/ others.

I agree!

It just boggles my mind the c--- I've had to deal with!

Regular retirement is bad enough.

Disability and other insurance can try you to the limit! I'd challenge someone WITHOUT HD to sort all of this out!!!

You have to go to various agencies and insurance companies. They all tell you something different. If (like many people) you can't afford a "retirement consultant" - you can be subjected to being jerked around, ad nauseum!

If we're to instigate any HD advocacy - I'd like to see it address insurance/disability issues. The disabled have enough to worry about, without being subjected to that!

Zach!

I'm not sure how the previous post ended up on your list - but it was not intended.

Here's my take (and anyone can correct me, if I'm wrong).

Believe me, I understand the impatience, once you've made the decision to test. The impatience waiting for the results. It can be excruciating! But the decisions you make now will effect you for a great deal of time.

I don't think you have a choice on question 1. You'll either have to answer "yes" - or you'll have to lie.

I think you could POSSIBLY be safe on question 2 - as it says "recommended'" - and you're self-referred. I'd still search very carefully for a "pre-existing condition" clause. If you don't fulfill that - you can be denied coverage, even if you think you have it.

LTC. I would ordinarily recommend this for a PHD. The only reason I haven't mentioned this among my own coverage, is not because I don't believe it's a good thing.

I personally, don't see a use for it because of my determination to exercise my death-with-dignity rights before I become disabled enough to require LTC.

But that's just me. I've been certain about this for over 20 years. If you're not - or if you have any question at all (and I'm addressing others on this message board, as well) - I'd say that LTC is definitely necessary for a PHD!

Whatever insurance you get, I'd advise getting it ASAP. Before you test. I know how hard that is. But you're faced with the trade-off of being patient now - or lying (and risking the conseqences) later.

Hi zach,

You are fixated on making the wrong moves reagarding securing insurance and testing. I believe you will not get insurance based on you disclosing HD. Please re-read all of the above posts very carefully because they give good acurate advice about what to do.

Are you going through with testing under your name and social security number or are you paying cash and using a false name? You ask is long term care necessary? Long term care and loss of income due to not being able to work is where the MAJORITY of your costs will occur if you have HD. Many people with HD live a long time and need care for a long time and are not able to work for a long time. The average nursing home is $60,000 a year and care at home can be around $40,000. For someone with HD it is not unusal to need care and not work for 8-10 years (or longer) at an overall cost of $600,000 and no income. Medical insurance does not cover long term care expenses or the loss of income. You will either need to pay for long term care out of pocket or have a long term care policy pay those costs and you will either need to have enough savings to live on while you don't work or need a disability policy to pay you income. The only option I can see if you don't have the proper insurance or have the amount of financial resources will be to go financially destitute and hope medicaide or some other program picks up the cost.

It comes down to this. Unless you have a lot of money (some people due) I believe that anyone at risk with HD should purchase medical, long term care and disability insurance before testing. If you stop the testing process I don't know why you need to disclose anything on an insurance application. I don't think insurance applications ask questions about being at-risk. They ask about treatment, care and diagnosis and you would have none of those if you stop the testing process and change insurance agents. I don't think it is necessary to purchase long term care or disability insurance if you can comfortably incur around $1,000,000 in expenses and still have enough to live on. Long term care insurance - in general - is a product recommended for those with assets between $100,000 and $2,000,000. If you have under $100,000 it is probably not worth the premiums to protect that amount and over $2,000,000 it is assumed you can generate enough income to comfortably pay for long term care without insurance.

I could possibly alter my advice if I had more information on you such as how old are you, are you married, any children, employment etc. Please do research, read and go slowly. I can appreciate your need to know about HD and test quickly but just remember it will dramatically and negatively affect employment applications and insurance applications. Make sure you have the job you want and the insurance you want before doing anything more about testing.

Mark

JL/ Mark
I appreciate all your help! ---theyre kicking me out of the computer lab...so i will talk tomorow...and let you know more info..!
Thanks...

My husband has been out of work since Oct 04 can we still apply for disability ins.On Mon is his first visit to a neurologist who has many HD patients do I need to get ltc ins before this date. Sorry if someone has answered this ques already.Sometimes i need things handed to me in steps the way it should be done. thank you jen

Mark,

Thanks for your sound advice. Keep it up. It is a great service to this HD site. It is SO important to plan, plan, plan before people do anything. That goes for pHDs and anyone else.

Aud--unfortunately people tend to wait until illness is imminent to start planning to buy insurance. If insurance companies sold insurance to anyone who came knocking, regardless of their physical situation, none would survive or the average person could not afford the premiums. If we plan, we avoid these dilemmas.

Jen--if your spouse has been out of work a year due to an illness and if he has been treated by a doctor for it, it seems unlikely that he will qualify for insurance. You must get ALL insurances before anything gets in his medical record and before he is diagnosed.

Dave

Why do you have to tell the health insurance people about this?

Don't tell the doctor about the health insurance and vice versa.

How are they going to find out?

I never bought private health insurance. I always got it from work. But if I did, I don't think I'd tell them about this.

After all, you might not need it for a long time. I'm sure that if the symptoms start to present themselves, just go to another neurologist and tell him the deal. He'll run a new genetic test and then diagnose you then.

After all, they only know what you tell them. It's health insurance, not life insurance. You may not need anything for years from it.

The best thing to do is to have a quotes for a couple of insurance companies. Why don't you try checking out [www.insurancepaylite.com] for free online quote. Hope this helps you a lot with your concern. Good luck!