April 4, 2009

Pre-Existing Conditions

Two articles in this morning’s newspapers speak to one another — but they don’t know it.

One is a fascinating piece in today’s Boston Globe focusing on the genetics of an aggressive form ofcolon cancer. 

Another in The New York Times’ Business section counsels readers how to get health insurance when they’re already dealing with pre-existing conditions.

The Globe piece highlights genetic research linking descendants of one almost-Mayflower family who suffer from a deadly form of colon cancer.  Scientists combed genealogical archives to piece together the puzzle linking families in New York and Utah.  Now that they’ve isolated the genetic mutation giving carriers a 2 in 3 lifetime chance of developing the cancer, scientists can offer aggressive screening practices in hopes of helping carriers catch nascent tumors before they’ve spread.

The Times piece counsels readers how best to hang onto coverage when they have what insurers euphemistically call “pre-existing conditions,” or medical conditions that existed before application for health insurance.  The definition includes conditions for which patients have sought coverage in the previous six months.  Insurance companies in 44 states may either deny coverage or charge more to those deemed to have a “pre-existing condition” at the time they apply for health insurance.

Most insurance companies — but not all – can’t exclude based on the results of genetic testing. They can, however, deny coverage if applicants actually suffer from the disease for which they’ve been tested.  The thinking, apparently, is that insurance companies don’t want people waiting to sign up for policies after they’ve already become ill. That’s too expensive.  Instead, they want healthy people in their pools.  They are insuring against the potential for future illness.

I suppose some of this makes sense if you squint really hard.  Perhaps these kinds of rules would have been appropriate in the 1930s, when Blue Cross (hospital insurance) and Blue Shield (physicians’ services) were founded.  American health costs were relatively low.  There was no such thing as genetic medicine.  I’m not sure there even was such a thing as a pre-existing condition back then. (I don’t know when insurance companies formulated the concept of “pre-existing conditions” and couldn’t find a history on the web — would be grateful to learn more from those with answers.)

Without a doubt, though, the concept of “pre-existing conditions” makes no sense in the twenty-first century, when advances in genetics change our understanding of health. If, for instance, a person is battling invasive colon cancer, carries the colon cancer mutation identified in the Globe article, and has no health insurance, how is it possible to pinpoint a time when she or he would not have had a pre-existing condition?  The genetic abnormality was there, lying in wait, from the moment of conception.

I guess this begs an epistemological question.  With many types of illness, knowing what we know about mutations and genetic predisposition, is it still possible to demarcate a before and after with certainty?  Is there just one, long, unbroken line of “condition” stretching back to the original mutant?  If so, how can insurers continue to craft policy based on the concept of “pre-existing” conditions?

For me, this isn’t just an exercise in hypothetical thinking.  I carry the BRCA-2 mutation, conferring about an 80% lifetime risk of developing breast cancer.  I’ve reduced my risk with surgery, but with three teenagers, my worry is not over.  It seems enough to worry about whether or not my kids will be carriers.  It is almost unbearable to have to worry if they will be able to get health insurance because of a genetic predisposition or pre-condition.  I want the Obama administration to bring insurance companies to their knees on this one: no more language about pre-existing conditions when it comes to coverage.  Of course, if we have universal coverage, none of us will need to worry about this concept again.

I feel like a killjoy when I talk about possible career paths and jobs with my kids.  “Whatever you pick,” I tell them, “just make sure it comes with health insurance.”  What a terrible way to talk with young people on the brink of hatching plans and dreaming dreams.