WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

Tom

Do you think insurance companies should have legal access to HD tests?14 months ago

Robert Antón

I guess it would depend on whether you currently have HD or not, and whether you have insurance or not? Seems like a tricky situation either way.14 months ago

Cari

my biggest concern regarding insurance and HD is if a parent's positive status can be "used against" their children. also, i don't think insurance companies should be able to ask you to take the test or not.14 months ago

Lynn

I don't think they should be able to know, especially if you have no syptoms. some people get positive test results but don't display symptoms for long time.14 months ago

ron

I am gene positive, disease negative and just began work at a new job.  Since my work does not have group Long Term Disability, I have been looking at Private Long Term Disability, and private Life Insurance options, but all of the insurers use a blood test as part of their screening process before you can get their insurance.

 

DOES ANYONE KNOW IF THEY SCREEN FOR HD AS A REGULAR PRACTICE OR JUST SOME INSURANCE COMPANIES? AND IF SO, DID ANYONES’ HD GENE POSITIVE STATUS COME OUT WITH A BLOOD TEST FOR A PRIVATE LONG TERM DISABILITY INSURANCE COMPANY?  AND WHICH COMPANY DID THIS HAPPEN WITH?

 

My concern is that there is a company that offers a package which has a liberal definition for catastrophic total disability that includes disability due to severe deterioration with thinking, memory etc.  They list some examples of causes like a stroke and HD, specifically. Do you think they will test for HD, considering they mention it as part of their package?

 

At first I wanted to take that policy, but I thought about it and realized that if HD is rare to the insurance companies, why are they mentioning it in their informational handout?  What concerns me is that they make you take a blood test first.  The gene test has been around for > 10 years, so what if that is part of blood test, and this information becomes public record to the insurers?  I have been told by them that they share a computer database for people’s health information just like this, along with information about if you tried getting insurance with someone else.

 

I AM CONCERNED ABOUT THIS BLOOD TEST.  I WANTED TO GET OTHER PEOPLES PERSPECTIVES ON THIS, BECAUSE SURELY THERE ARE SUCCESS STORIES AND FAILURES ABOUT CERTAIN INSURERS’ BLOOD TESTS.

 

Since this is private information please email me at music7777@yahoo.com

 

I would really appreciate an insight on this the soonest possible.

 

Thank you

 

11 months ago