Genetic Information Nondiscrimination Act

[Lisa]

From: Info-ACDA [mailto:info@americanceliac.org]

Sent: Wednesday, May 21, 2008 8:00 PM

To: Celiac Listserv

Subject: Genetic Information Nondicrimination Act Signed By President Bush

Earlier today, President Bush signed the Genetic Information Nondiscrimination Act (GINA). This legislation is vital to all individuals who have, or whose family member may have, a genetic condition such as celiac disease.

This landmark law, which I personally worked on when it was first introduced in 1995, BARS insurance companies from requiring individuals to undergo genetic testing and BARS insurance companies from using an individual

[Lisa]

This is good information for those who would like to pursue gene testing for themselves or their family members, without fear of insurance retaliation.

[lizard00]

This is good for me, with a possible impending diagosis. I am having the genetic test done by Prometheus next week. Hopefully I should have an answer by the end of the week. But it's nice to know that they will not raise my rates (although I'm pretty sure they can't - it's a group rate). I hope they don't slap me with a bill later though for the test. I have no idea how much it costs, but I'm sure it's expensive. This is great news though!!

[HouseKat]

This is good for me, with a possible impending diagosis. I am having the genetic test done by Prometheus next week. Hopefully I should have an answer by the end of the week. But it's nice to know that they will not raise my rates (although I'm pretty sure they can't - it's a group rate). I hope they don't slap me with a bill later though for the test. I have no idea how much it costs, but I'm sure it's expensive. This is great news though!!

When I had my testing done, the GI doctor told me that it would take two weeks minimum to get the results. When I went in to get my results I saw from the fax machine time stamp that they had come back three days after my blood was drawn.

I shouldn't have been surprised though, that man was a fount of bad information...

Kate

[MaryJones2]

This is good for me, with a possible impending diagnosis. I am having the genetic test done by Prometheus next week. Hopefully I should have an answer by the end of the week. But it's nice to know that they will not raise my rates (although I'm pretty sure they can't - it's a group rate). I hope they don't slap me with a bill later though for the test. I have no idea how much it costs, but I'm sure it's expensive. This is great news though!!

I am currently dealing with some insurance issues and wanted to share with everyone and see if anyone has any ideas or suggestions that I've missed.

For many years I was insured through employers with no issues. In October 2006, I left my company and elected COBRA coverage. My COBRA coverage exhausted on April 30 of this year. I have been shopping for "major medical only" insurance for several months and here's what I know now that I wished that I'd known several years ago when I started this celiac journey. Knowing this may have changed the way I handled my diagnosis.

Most, if not all, private insurance companies will not write an individual policy for a person officially diagnosed with celiac disease. Same goes for life insurance. Unfortunately, this new law does not prevent companies from declining to offer coverage which is the boat I am in now.

I have escalated this issue very high in several insurance companies as well as with my representatives. I have offered to pay a higher premium as well as have all claims related to celiac excluded from coverage to no avail.

The options that are available to diagnosed celiacs seeking private insurance are:

1. Work for someone with a group policy. (or have a spouse covered under the family or individual + elections).

2. Join a government high-risk pool that allows otherwise uninsurable individuals to get basic health insurance (some states don't offer this and mine is one of them).

3. If you were covered by a group policy AND exhausted your COBRA coverage AND have not had a break in coverage of more than 63 days you are eligible for a HIPAA-eligible plan through a private insurance company. There are usually only one or two companies in each state that offers these policies and the coverage appears sketchy.

4. Join the ranks of the uninsured and hope nothing happens.

My advice, if you know you are celiac but haven't been formally diagnosed. Don't seek that absolution. Trust what you know to be true and leave well enough alone.

Here are the basics on HIPAA-Eligibility:

"HIPAA eligible" individuals must have exhausted all options for coverage under any group plan and must meet all of the following criteria:

* Have had continuous coverage for a minimum of 18 months with the most recent period under a group health plan without a significant break in coverage of more than 63 days in a row.

* Have been offered the option for continuation of COBRA coverage, and have elected and exhausted it, or are ineligible for continuation of COBRA coverage altogether, or other similar state programs

* Did not have their group coverage terminated because of nonpayment of premiums or fraud

* Are not eligible for coverage under another group plan, Medicaid, or Medicare.

In this case, only applicable individual health policies or state high risk pool plans may not exclude coverage for pre-existing conditions nor turn down an application for coverage only if all of the criteria is met as a "HIPAA eligible" individual and the individual applied within 63 days of the last date of coverage under a group plan.

Individual market carriers may elect their two most popular individual health policies or "representative plans" for "HIPAA eligible" individuals. These are the only plans that may not impose pre-existing condition exclusions, but HIPAA does not limit premium rates on these individual policies.

*Note: all "HIPAA eligible" individuals must apply to the appropriate entity as mandated by their state of residency. For instance, some states guarantee access to healthcare for "HIPAA eligible" individuals to high risk pools only, while other states guarantee access to all individual markets carriers, or both.

Individual market carriers may impose a wait period for pre-existing conditions or deny coverage to "HIPAA eligible" individuals if access to non-group healthcare is provided by state high risk pools only.