Health Insurance Declining Coverage For Celiacs

[azgirl5]

One year into diagnosis and find myself looking for individual health insurance. Not fun. Was never informed that this could be a problem getting coverage. Are people with peanut allergies on an auto decline list? Hopefully "pre-existing" conditions won't be an issue come 2014 due to Obama's healthcare changes, but that doesn't help right now.

For those who may also be looking for coverage, you may find the following helpful. And because coverage varies by state, you may find an insurance broker helpful. I found mine through my credit union.

Blue Cross - Told they are very strict with underwriting and also tend to be one of the more expensive so guessing they would likely decline Celiac.

United Healthcare - Celiac is on automatic decline list.

Humana - Celiac is on automatic decline list.

Aetna - Am told by my insurance broker that Celiac doesn't appear to be on the automatic decline list, but we'll find out shortly if I can get coverage.

A back up plan may be the government's new pre-existing coverage, but it also has some specific criteria that must be met. Open Original Shared Link

Hoping that coverage will continue to get easier for us.

[GFinDC]

Insurance has come up on the board before. But I never saw a list of companies who would auto decline people based on celiac. Might be a good reason not to get diagnosed.

[Wenmin]

Insurance has come up on the board before. But I never saw a list of companies who would auto decline people based on celiac. Might be a good reason not to get diagnosed.

When I officially became an undiagnosed celiac by my Celiac Specialist, that was his exact words. He asked if I was doing well on the diet. I told him yes, I was. He asked if I officially needed a diagnosis. I asked if it was necessary and asked him to explain the benefits/down fall of being diagnosed celiac. He said, "I know you are celiac, and you know you are celiac, but your insurance company will never know or have to find out!"

I agreed with him, so officially I am a diagnosed, undiagnosed celiac.

[ElseB]

Thank god I live in Canada!

I did get rejected for life insurance by one company. Made me so angry that I eat well, exercise regularly and am in perfect health except for the Celiac. But the overweight person who eats fast food every day and will probably have a heart attack or develop diabetes in a few years would have no problem getting life insurance! I'm going to live way longer than they are!

[zimmer]

One year into diagnosis and find myself looking for individual health insurance. Not fun. Was never informed that this could be a problem getting coverage. Are people with peanut allergies on an auto decline list? Hopefully "pre-existing" conditions won't be an issue come 2014 due to Obama's healthcare changes, but that doesn't help right now.

For those who may also be looking for coverage, you may find the following helpful. And because coverage varies by state, you may find an insurance broker helpful. I found mine through my credit union.

Blue Cross - Told they are very strict with underwriting and also tend to be one of the more expensive so guessing they would likely decline Celiac.

United Healthcare - Celiac is on automatic decline list.

Humana - Celiac is on automatic decline list.

Aetna - Am told by my insurance broker that Celiac doesn't appear to be on the automatic decline list, but we'll find out shortly if I can get coverage.

A back up plan may be the government's new pre-existing coverage, but it also has some specific criteria that must be met. Open Original Shared Link

Hoping that coverage will continue to get easier for us.

Very interesting! thanks. Insurance issues are the main reason I never pursued an endoscopy which could possibly have given me an official diagnosis. However I still fear that simply the act of having the blood test and a GI consult might be a problem at some point.

[azgirl5]

Yes, I wish my doctor had told me options. She didn't even tell me she was doing a test for celiac. She did the normal blood panel with normal results and it was a month later she called me with the antibody test results (which I had no idea she'd run) showing positive.

I wish she'd asked me if I wanted the test and discussed the pros and cons with me. Had someone told me I was going to be uninsurable down the road with a positive result, I'd have tried excluding gluten from my diet "off the record" before red flagging myself for life. I've never had any biopsies or endoscopy done so I'm being declined strictly off a positive blood test. Definitely a testament to exploring your options before getting an official diagnosis.

And based on what my insurance broker told me, once you've been declined for insurance, all the other insurance companies can see that. They can't necessarily see the reason for the decline, but they can see you were declined and assumably will dig to find out why.

It is really infuriating that a condition controlled by (a healthy) diet, which I'm not under a doctor's care for and cannot take any RX for, makes me uninsurable. Our health system definitely needs more work. Hoping the removal of pre-existing conditions in 2014 will alleviate these issues - assuming the insurance companies don't come up with loopholes to get out of it by then.

[zimmer]

How maddening! That borders on unethical for the doc to run a test without your consent or knowledge. Have you talked to them about that, and that you have been denied as a result? Maybe there is something they could do on your behalf to appeal the decision.

Were you diagnosed via endoscopy following the blood results to get a formal, classic diagnosis?

My doc told me he was ordering the test, but I wish I knew then what I know now!

[azgirl5]

How maddening! That borders on unethical for the doc to run a test without your consent or knowledge. Have you talked to them about that, and that you have been denied as a result? Maybe there is something they could do on your behalf to appeal the decision.

Were you diagnosed via endoscopy following the blood results to get a formal, classic diagnosis?

My doc told me he was ordering the test, but I wish I knew then what I know now!

I have not persued an endoscopy. Removing gluten from my diet has resolved my issues and my positive blood test was apparently VERY positive. Like your antibody range is supposed to be 0 - 10 and mine was 108. So not mildly intolerant to gluten, but officially celiac according to the dr. And yes, I should let the dr's office know that they've red-flagged me as being uninsurable. I don't believe that particular dr is even with that office any longer, but they shouldn't be performing tests without advising people what they are doing, asking if they want the test and discussing pros and cons of the test.

[sherrylynn]

I have not persued an endoscopy. Removing gluten from my diet has resolved my issues and my positive blood test was apparently VERY positive. Like your antibody range is supposed to be 0 - 10 and mine was 108. So not mildly intolerant to gluten, but officially celiac according to the dr. And yes, I should let the dr's office know that they've red-flagged me as being uninsurable. I don't believe that particular dr is even with that office any longer, but they shouldn't be performing tests without advising people what they are doing, asking if they want the test and discussing pros and cons of the test.

May I ask you, Do you live in Arkansas? Just wondered if the insurance co's are like that here.

Thank you, sherry.

[azgirl5]

May I ask you, Do you live in Arkansas? Just wondered if the insurance co's are like that here.

Thank you, sherry.

I am in Arizona. Not sure if it varies by state or if it's more across the board.

[azgirl5]

An update on my original post on this topic..

I am once again in the market for individual health insurance & while I have not been through the underwriting process or been approved for any coverage, my insurance broker has spoken with underwriters from Humana, Aetna and Healthnet, all of whom indicated that if the Celiac had been controlled by diet for more than 1 year, it shouldn't be an issue.

I'm going on 2 years since diagnosis and I just had a physical in October. My general blood results came back across the board perfect, so hoping that will back up my "eligibility" and that I'll be able to obtain fairly normal coverage without extra costs or riders. I'll be applying in the next couple weeks so will report back on how it goes. Crossing fingers!!

I still say -- if you have the option to try diet adjustments without getting officially diagnosed, I'd say it's worth keeping the Celiac status on the down low from an insurability stand point.

[Roda]

Just curious were you covered when you recieved your diagnosis? Did you have a lapse in coverage. I have changed jobs several times and opted to either buy short term coverage(until I was eligible at my next job) or got COBRA. As long as there wasn't a lapse in coverage the insurance company couldn't deny for preexisting(before celiac diagnosis). Of course some people either loose their insurance, wasn't insured to begin with or can't afford to do what I did.

I'll be keeping my fingers crossed that you get coverage!

[BethSLP]

This is so disheartening to read. Thank you for sharing this information, as I am trying to decide whether or not its important to pursue an "official" diagnosis. After being blown off by a G.I., I did Cyrex testing with a naturopath. I was "out of range" on 21 of 26 items. The 5 that were normal were all IgA measures (which I understand can be low if someone has overall low IgA). My IgG results were significantly out of range including the tTg. Cyrex did not measure my total IgA so this was a source of frustration for me. I did consider whether or not I wanted to be "on the radar" with my insurance company as my insurance is an individual policy with BCBS as well. It is ridiculous that we have to consider such things. My heart goes out to you. I think its crazy also that if you don't even have a confirmed diagnosis, they can reject you. Big hugs and best wishes!

Beth

[BethSLP]

Roda,

In my case, my husband and I both work for the public schools in Texas. He works directly for the district. I am an independent contractor. Because he is an employee, his portion of healthcare is subsidized. Our kids and I are both allowed to be on the policy, but the district only subsidizes the employee, which means we have to pay A LOT more for us to be on his plan. It was cheaper for me to go with an independent broker and buy my own insurance. That said, I've had the policy for over 2 years now, so I don't know if that affects anything as far as a celiac diagnosis would go. I assume they could still raise my premiums if they wanted to, and i would no longer have the option of switching policies without going into the underwriting process again and having to disclose celiac. A buddy of mine is my broker and he told me that one of his friends had a child with multiple ear infections and ear tubes. They were told that they could get coverage but that they would "exclude the child's ears" so that any issues with the ears were not covered. Its criminal. Most people with any illnesses of any kind end up taking the group policy because they can't give you trouble on pre-existing conditions. But individual policies are becoming more common and cost effective for a lot of people, particularly the self employed.

Beth

[carecare]

This is so interesting. When I called to find out if my colonoscopy and endoscopy would be covered by my insurance and to what extent they told me it depends on what they find with the endoscopy. What I got from the conversation is if they find something wrong (them knowing I'm going in to get checked for celiac) then my coverage was not going to be as high as if they didn't find something. I was appalled! How could they cover or not cover a procedure based on what they find.

[dilettantesteph]

I think that without a positive biopsy you can say that you have not been diagnosed with celiac disease. That is the gold standard for the diagnosis. They say that there can be other reasons for a positive test. The fact that a follow up test was negative could be considered confirmation that you don't have celiac disease and the previous positive test was due to something else. No one has to know that you didn't eat any gluten between tests, do they?

I believe that you could even get a doctor to put on your chart that without a positive biopsy, you do not have the gold standard diagnosis for celiac disease. Certainly you can put that on an insurance form.

[GlutenFreeNewB]

I am a self-diagnosed celiac. I am self diagnosed because I'm uninsured. I've always known that should I get coverage, I won't mention celiac at all. I've been eating gluten-free and it's helped. It sounds to me that your problems only increase when doctors and insurance companies are involved. Since I'll get better on a gluten-free diet with or without them...let's just leave them out.

[modiddly16]

I have BCBS and have never had any issues in regards to getting coverage for something celiac related.

[BethSLP]

I have BCBS and have never had any issues in regards to getting coverage for something celiac related.

mo,

the question is whether you could buy a BCBS individual plan at this point in time. No one doubts that if you are already insured, you'll be covered. But if you were not on a group plan through your employer, but shopping for an individual plan (like small business owners or other self employed people), would you make it through underwriting?

my friend sells insurance for a living. and people get approved with stipulations like "we'll approve you but exclude your child's ears." because a kid had multiple ear infections. in the case of celiac, it sounds like its an automatic denial. things are different if you have had the insurance for a while and will never change. but if my premiums went through the roof, and I wanted to shop for a different plan, it would be likely much more difficult with a diagnosis. this is the conundrum. most people I know take the employer one if they have any illnesses, because you have to be basically healthy to get an individual plan at all. its a sad state of affairs.

XOXO

B

[Celtic Queen]

There's a certain sick irony in the fact that you can't buy individual insurance because of a disease that doesn't cost the insurance company any money to have treated, other than the occasional testing. It's not like they have to pay for your gluten free food. I guess the higher risk of contracting an autoimmune disease is what they're worried about.

I have BCBS and have never had any issues in regards to getting coverage for something celiac related.

Actually, I sort of have. When my Celiac panel was done I also had blood testing done for a variety of food allergies/intolerances that could be related(soy, corn, dairy, egg, etc). BCBS refused to pay for that part of the testing, although they did cover my Celiac panel. My doctor had to write off the cost of the other tests. I felt bad because I was the one who had asked for both sets of testing to be done. But BCBS refused to pay for it.