<<Disclaimer: Verify this information before applying it to your situation.>>

Below is an excerpt from IDEAS, a newsletter put out for support group leaders 
by the University of Chicago Celiac Disease Program.

It has some great ideas to help you obtain health insurance.

I hope that this is helpful.

Barbara in SW Missouri



I.D.E.A.S.
Initiative to Develop Education
and Awareness Strategies
A Newsletter for Celiac Support Group Leaders
 from the University of Chicago Celiac Disease Program

 
DON’T TAKE NO FOR AN ANSWER: INSURANCE ISSUES FOR PEOPLE WITH CELIAC DISEASE

Dealing with insurance companies under the best of circumstances is stressful. 
After a diagnosis of celiac disease, it can be especially frustrating because 
insurers aren’t any more informed than the medical community or the public at 
large about celiac disease. Making your case for coverage can often involve 
more hurdles because of this, but in some cases, this effort is more than 
worthwhile (depends on the type of insurance you have). 

At the University of Chicago Celiac Disease Program, we often hear from 
families who have problems with insurance coverage for specific reasons.

1.	Insurance coverage for genetic testing: When a family member is 
diagnosed with celiac disease, parents often want to test the children in the 
family to learn which ones are at risk. They are told by their insurance 
company that the genetic test isn’t covered (very common). 

We suggest that they present a cost-saving argument to the insurance company—
the child who is found to be gene negative will no longer need antibody 
testing every other year until they are 18. The cost for this testing is 
higher than the cost for one genetic test.  This argument is successful on 
occasion, but not all the time.

2.	Pre-existing condition: Switching insurance companies often leads to 
the new company identifying the person with celiac disease as having a pre-
existing condition. 

We suggest educating the insurance company that a person with celiac disease 
who follows the gluten-free diet is as healthy (if not healthier) than the 
average American walking down the street.  Again, this is an argument that has 
scientific merit, but it does not work every time.

3.	Denial of coverage: We hear about this a lot, and it usually occurs 
when an individual buys their own coverage from a smaller insurance company. 
Because they are buying into a small “risk pool” the insurance company is 
likely to reject anyone with any type of chronic or serious medical condition. 
We frequently recommend that individuals not apply to these types of plans in 
the first place because a record of a denial can be harmful. There are usually 
major medical Blue Cross Blue Shield plans, or state-run plans for people who 
cannot find health insurance anywhere else. These are your better bets.

4.	Coverage for dietitian visits: In the U.S., insurance coverage for 
dietitian visits is mandated by law. Currently the law allows coverage for 
only a few types of dietitian visits, including coverage for transplant 
patients and people with type 1 diabetes. Celiac disease is not covered, so 
any time a newly diagnosed celiac wants to learn about the gluten-free diet 
from a dietitian, that individual will need to pay out of pocket. 

The University of Chicago Celiac Disease Program is a member of the American 
Celiac Disease Alliance (ACDA). The Gluten Intolerance Group has asked the 
ACDA to put this issue on its agenda and we’ve supported this as a key issue 
for the Alliance.

There is a place for you to turn if you have questions or concerns about 
insurance issues. The Patient Advocacy Foundation, located in Virginia, helps 
people with chronic and life-threatening health conditions to sort out their 
insurance issues. They are a non-profit agency, and they can be found on the 
web at www.patientadvocate.org or at the following toll-free number: 800-532-
5274.

Reprinted with permission from the 
University of Chicago Celiac Disease Program

Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC