I didn't mean that it was a mental illness, and neither does our brooker, but rather that HD can cause mental disabilities, such as cognitive issues, depression, anger issues, personality issues, etc. and that the companies would not cover them.

My MIL has been positiviely diagnosed, but she is still living and doing quite well (just some small uncontrollable movements), but because of the positive diagnosis we have to disclose it.

Cole, let us know what your insurance broker finds out for you.

I'm confused.

How can the insurance company understand that HD is not a "mental illness" - and yet refuse to cover the common symptoms of Huntington's (a neurological disorder) by classifying those symptoms as "mental disabilities"?

They are neurological disabilities. They are caused by neuro-transmitter imbalances.

I know this issue has been successfully litigated with medical insurance companies. They cannot limit treatment of HD patients by classifying them as 'mentally ill.' Most medical policies provide more limited coverage for mental illnesses.

With Long Term Care insurance, it is very important to make sure that coverage is not limited to just the physical inability to perform the activities of daily living but includes cognitive impairment. If there's any question in buying the policy, read it carefully. The way to frame the issue is not to mention HD but Alzheimer's. "My neighbor's wife had Alzheimer's. She was physically capable of performing daily activities of living but was very confused and needed 24 hour supervision. Would nursing home care for her have been included if she had had this policy." (My neighbor's wife did have AD so it was a legitimate question).

I haven't heard of a provider of disability insurance attempting to distinguish between cognitive or psychiatric disability caused HD and physical disability caused by HD.

We have not even attempted LTC insurance and now i am able to say why we haven't.....i am NOT intelligent enough to search out and distinguish what we need, how it needs to be worded...this is so frustrating!!!

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.

Tom.

Don't you see the HIPAA laws as being adequate, in terms of assuring medical privacy?