A DNA test is not considered a diagnosis of Huntington's Disease any more than a positive test for the breast cancer gene is a diagnosis of breast cancer. HD is always diagnosed clinically and the DNA test is used for confirmation that the neurological signs do indeed indicate HD and not another disease with overlapping symptoms. Otherwise the DNA test is called a predictive test.

That is not to say that this might not be challenged in the future by an insurance company and have to be resolved through litigation. But right now, HD is not considered a pre-existing condition if the person was not symptomatic when they acquired the insurance.



Edited 1 time(s). Last edit at 03/21/2008 12:30PM by Marsha.

Thank you Marsha for that breakdown. That was exactly what I thought. I am going to apply this weekend.

With there being no pre-exsisting condition clause and a test result not being a diagnosis I feel very comfortable that I am in the clear.

Thank you all.

That truly is good news that there is no "pre-existing condition" clause in the policy that you're considering.

I'd go for it!

Anubis,

As I promised, I asked our COE about your LTC insurance question. They agree with us here that a positive HD test does not mean that a person has HD, so you can honestly answer the question that you do not have HD. (This assumes that you have not been diagnosed with symptoms).

I also asked an attorney, who specializes in elder care issues. She also agreed that you can honsetly answer (after simply being tested) that you are not diagnosed with HD. HOWEVER, she said we know that by asking that question, the insurance company is trying to screen out anyone with HD. Therefore, she recommends not making a claim against such a policy for at least 5 years after buying it--otherwise, the company might challenge the claim.

I agree that there is a vast difference between obtaining insurance - and having your claims approved.

According to my own information - it depends on the "pre-existing condition" clauses.

In any policies I've seen - the maximum period for a "pre-existing condition" exemption - has been 18 months.

That said - I really can't refute Dave's recommendation of 5 years.
To tell the truth, I obtained all of the insurance I needed, well in advance of 5 years. Knowing that I was at risk.

I cannot think but what it would be a good idea to obtain all insurance you might need, sooner rather than later.

JL is right.

For anyone reading this message board--please get all of the insurance you will EVER need before you get tested.

I must respectfully disagree with Marxha (and I seldom do) - but testing positive for HD - if it's the DNA test - IS definitive!

It's not like other diseases where there may be genetic "possible contributers" in your DNA.

The cause for HD is caused solely by an aberrant huntingtin gene at the top of chromosome 4.

Marsha has contended that the clinical diagnosis (the tests of motor skills and eye-tracking and balance) is the "definitive" diagnosis - and that the DNA test is only done to back up the clinical test.

Actually, the reverse is true. The only reason the DNA test is done, is because it's the only true and definitive test for Huntington's.

All of my readings and experiences and medical consultations support this.

Maybe Marsha's and my disagreements on this issue are merely a matter of the "sequence" of the tests. It's understandable to think that the "second opinion" is the most decisive. But I simply don't believe that's the case, with HD.

The reception of disability benefits will undoubtably require a "second opinion". But which comes second (and serves as the needed verification) can depend on circumstance.

Perhaps Marsha is more familiar with circumstances where people undergo clinical diagnoses first - because they are visually symptomatic.

That was not the case with me. Having grown up with HD - and knowing I was at risk, I chose to take the DNA test, proactively. BEFORE I was visually symptomatic.

My neurologist put me through the standard clinical tests. But not until she received my DNA test could she be "absolutely certain" that I had HD.

I could have had two clinical diagnoses. But clinical diagnoses are a matter of "professional opinion". To be respected, for sure - but not definitive and unchallengeable.

A CAG repeat of the huntingtin gene of 43 IS definitive and unchallengeable.

If an insurer is trying to challenge your claim - and I were to compare the chances of (1) a person with two clinical diagnoses - and (2) a person with one positive DNA test - I'd weigh on the side of the DNA+ person for being denied coverage, every time.

For heaven's sake - that's why so much time and effort have been spent on developing the DNA test. Clinical tests have simply been so unreliable!

Sorry JL but my Dr agrees with Marsha whole heartily. She told us years ago that a DNA test is only going to tell you if you might get the disease. Actual symptoms are the only thing that will tell you if you have the disease. My husband has no DNA test to back up his diagnosis in his case he doesn't need it. Even though it would be easy to argue that some symptoms are not readable long before you could be diagnosed. If you have no symptoms but have the gene I wouldn't think you have HD and I am sure many at risk people would agree. Just like you are not an alcoholic until it affects your daily life.

Sorry MRO and Marsha - but my Dr and studies and personal experience agrees with ME.

The only way you can defend your stance on this issue is if you insist on equating
having HD" with "being symptomatic".

I'm barely symptomatic - but I DO have HD.

My dad was barely symptomatic in his mid-60s, yet he passed the gene onto 2 of his 4 children.

Obviously there's a WHOLE lot more to the HD issue than being "symptomatic". I consider that to be a rather narrow interpretation of the term "having HD".

I can't believe that any physician with any experoemce with HD would not VERIFY my contention that clinical diagnoses are notoriously unreliable.

I did a deal of research on the family members which were known to have had the defective gene, because they passed it down. I can't begin to tell you some of the ludicrous diagnoses I saw!

Now, I'll readily admit that there is possibly more medical understanding, today. But not much, I'm afraid. One physician I consulted (who'd been a physician for over 20 years) - had to go look it up on web MD!

Then he tried to authoratatively PUSH me into testing, in spite of my explanation that I had to have certain insurance "ducks in a row", before I was willing to do that. But it was all about was all about him. His need to finally have a case that was more important than hemmorhoids.

I wisely chose instead to have the tests done by a neurologist who not only TREATS both Huntington's and Parkinson's - but does clinical studies and writes to medical journals.

Based on her clinical analyses. she said that she could "suspect" a neuroligical disorder - but not necessarily which one.

And based on my HD family history, it would most-likely be HD.

But being perfectly aware that those at risk for HD can certainly suffer from other conditions, as well (such as Parkinson's) - she was only convinced that I had HD when my DNA test came back.

Lot's of different conditions can "mimic" HD in a clinical evaluation - which of course is based on the physicians subjective observations.

NO OTHER CONDITION can "mimic" an abnormal huntingin CAG repeat. NOTHING.

Not Parkinson's. Not ALS. Not MS.

NOTHING.

So - you may choose to define "having HD" as "being symptomatic" - but I think I've abundantly demonstrated the shortsightedness - and even dangerousnous (if you intend to have children) - of that narrow definition.

The further danger to the "symptomatic" argument is that it's usually based on physical (i.e. observable) symptoms.

Neither my dad nor I developed noticeably physical symptoms.

But my dad obviously "had HD" (meaning the defective gene) - since he passed onto his 2 daughters!

I "have HD" (meaning the defective gene) - since my lab test came back with a CAG repeat of 43. Therefore, I can't imagine there being any doubt in anyone's mind that if I had had kids - they would now be in the position of dealing with the terribly difficult issues of HD.

Just like my sister's 4 children and 7 grandchildren are.

It alarms me hear people on this site (especially one as respected as Marsha) narrowly define "having HD" as "being symtomatic".

Nope! Symptomatic or not - if you have a CAG repeat over a certain range, you HAVE the defective gene, and can pass it on.

I don't consider this to be a mere difference in "semantics".
Otherwise, I'd have given up this argument long ago.

I consider it much more important than that.

One of our posters was convinced that because his Dr diagnosed him as "negative" - because he has a CAG repeat of 39 - just one repeat below what has arbitrarily been established as the official threshold for an HD diagnosis - but still way beyond the range of normal repeats - this guy was utterly convinced that there's no way possible that he could pass the gene onto one of his 4 children.

Of couse, with a CAG repeat of 39 - and with it being male transmission (with it's more common amplification of the
CAG repeats - he could VERY WELL pass on a copy of the gene that exceeds that threshold.


So I think it's really dangerous and misleading to define "having HD" as being equal to "being symptomatic".

It disregards other very important (if not MORE important) aspects of HD.

It's inheritability. Strong inheritability, since unlike other inherited diseases, it's autosomal-dominant.

And that unlike other neurological disorders, It can DEFINATIVELY be determined from a DNA test.

Now, admittedly, the number of CAG repeats can only approximately predict whether or when "symptoms" may occur - that's why I distrust "symptoms" as the "definitive" measure as to whether one "has HD"

It's NEVER been a definitive measure or test for HD - that's why we've spent a couple of decades coming up with a DNA test!



Edited 1 time(s). Last edit at 04/14/2008 12:05AM by JL.

So if I have the breast cancer gene, regardless of having a lump I have breast cancer?

Isn't that why we are fighting for GINA, Genetice Informaion Nondiscrimination Act.

How do you explain two identical twins having HD but only one symptomatic? It is not just the gene or your CAG that causes HD symptoms to appear, environmental factors play a big role just having the gene is not enough.

Without a lump I do not have breast cancer and without symptoms I don't have HD, I have two working HD genes.

MRO - you know there is no correlation between breast cancer and HD.

NONE!

THERE may be genes that would indicate that you have a higher susceptability to breast cancer. But there's no specific gene that "causes" breast cancer.


There is, with HD. The gene has been located. A DNA test for an abnormal CAG repeat of the huntingtin gene at the top of chromosome 4 is definitive of having inherited Huntingon's.

While you may well say that in the absence of "symptoms" of breast cancer (such as a lump) - may very well be interpreted (or not!) as an absence from the disease.

The situation with HD is entirely different. Attempting to equate the two is dangerously misleading.

MRO, I quite frankly don't know what you mean by "two working" HD genes.

HD is degenerative. We know that. If a person has one huntingtin CAG
repeat of 15 - and another of 43 - and one is not exhibiting symtoms - does that mean that one is HD-free? Hell no!

It means that one is HD+, and pre-symptomatic.

I posted this on accident on the disability insurance thread. Sorry for the double post.

The doctor I saw recommended I do the test anonymously. Fake name, pay cash, no social security number etc.. My real information does not exist anywhere in that doctor's office. If you have that option I would recommend you go that route if all you're doing is the genetic test and require no other treatment. Not sure if doing the test anonymously will help in any way in the future but until there are better laws regarding genetic testing I felt it was worth it.