Health Insurance And Genetic Testing

If you have a few minutes, I recommend listening to Marjorie’s story on Colorado HealthStory.  To sum it up, the breast cancer gene runs in her family, and after undergoing testing, she was found to be a carrier.  Her doctor recommended a prophylactic hysterectomy and bi-lateral mastectomy, which were both done at the same time.  Marjorie has individual health insurance (she’s in Colorado, but the story doesn’t go into detail about which carrier she has) and her carrier denied the claims for her surgery, noting that it was done as a precaution rather than in response to illness.  In other words, it she had actually had cancer, they would have covered the bills.  But having the surgery in order to prevent cancer resulted in a claim denial.

Marjorie is obviously a fighter, and well-informed as to her consumer rights.  She appealed the decision and followed the trail all the way to the highest levels, eventually traveling to WI in order to present her story to the grievance panel for review.  In a victory for Marjorie, the grievance panel overturned the denial (not sure if that translated into everything from the surgery being covered or not, but we have to assume that at least some of it ended up being covered).

health insurance and genetic testingThere is no doubt that Marjorie’s surgery was major, probably at least somewhat psychologically traumatic, and involved quite a bit of recovery time.  Even when faced with already-present cancer, the decision to go ahead with a hysterectomy and mastectomy is difficult for a lot of women.  To have the courage to do so based on genetic testing is a testament to a strong desire to be healthy.  And although I’m sure the price tag was steep for those surgeries, it was definitely lower than it would have been if the surgeries had been combined with chemo and radiation and years of follow-up cancer therapy – as would have been the case if Marjorie had skipped the preventive surgeries and then gone on to develop cancer.  From that perspective, it seems obvious that it’s in the insurance carrier’s best interest to pay for the preventive surgery (although the obvious caveat is that a person with the breast cancer gene might never develop cancer, in which case the health insurance carrier wouldn’t be faced with any claims at all, even if the preventive measures were not taken).

For right now, however, preventive care such as this – based on genetic testing – is not generally covered by individual health insurance carriers.  The first question we had when we listened to Marjorie’s story was whether or not Marjorie and her doctor contacted her health insurance carrier prior to the surgery to pre-certify the treatment.  In general, I would say that’s the best course of action.  It’s probably a lot easier to jump through appeals hoops when you’re not also trying to recover from major surgery.  And if you don’t end up being as lucky as Marjorie was, and the carrier doesn’t agree to fund your treatment, at least you know from the start that you’ll have to raise the funds yourself.

I’m sure there are plenty of people who would listen to Marjorie’s story and be annoyed that something like this isn’t covered by health insurance.  Our gut reaction is to say something like “Of course it should be covered!  She’s taking this action to keep herself healthy, and it will save money in the long run.”  But genetic testing has been a bit of a no-man’s land when it comes to health insurance.

The Genetic Information Nondiscrimination Act of 2008 (GINA) basically prevents health insurance carriers from using genetic testing as a reason for denying coverage, raising premiums or imposing pre-existing condition exclusions.  This is true in the individual market (where other forms of medical underwriting are the norm) as well as the group market, and is clarified here by HHS.  As of 2014, all individual health insurance will be guaranteed issue.  To offset the premium increases that would no doubt accompany that change, the individual mandate will require everyone to carry health insurance.  As far as I’m concerned, both of those changes will be good for insurance and good for the general public.  No longer having to worry about being declined based on a pre-existing condition will make life easier for everyone who is – or wants to be – self employed or employed by a small company that doesn’t offer health insurance.

But for now, individual health insurance is medically underwritten.  Health history is very much a part of an individual health insurance application – in Colorado and in most other states.  But not genetic testing results.  That’s off limits, and I think most of us would agree that it’s good for genetic risks to be off limits from an underwriting perspective.

We have to keep that fact in mind then, when we look at whether health insurance carriers should be required to pay for treatment that is based on genetic testing results (and is strictly preventive, with no current disease being treated).

Is it fair to say that health insurance carriers shouldn’t be able to use genetic testing information during underwriting, but that they should have to pay for preventive healthcare that results from genetic testing?  I don’t think there’s an easy answer there.  It’s hard to put a price tag on health and life, and it’s difficult to say that a person who is making such a hard decision should also be faced with a potentially very large medical bill at the same time.  But if we’re going to categorically state that genetic testing cannot be used to the advantage of health insurance carriers, it’s hard to turn around and say that the carriers should also be required to pay for treatment that comes about as a result of that same testing.

What do you think?  As technology moves forward, I have no doubt that genetic testing will become more routine, and various preventive measures based on those tests will likely become fairly commonplace.  If they become a larger part of our general healthcare process, I would say that it’s reasonable to assume they will also be covered more frequently by health insurance carriers.  And as of 2014, some of the issues addressed by GINA will become moot points too, as health insurance will all be guaranteed issue.  So this is a subject that might just work itself out naturally over the next decade or so.  But for now, it does leave plenty of room for debate.

About Louise Norris

Louise Norris has been writing about health insurance and healthcare reform since 2006. In addition to the Colorado Health Insurance Insider, she also writes for,, Verywell, Spark by ADP, and Boost by ADP, and Gusto. Follow on twitter and facebook.

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