Chromosomes are expensive

Genetic studies are not for everyone. How do I know? Because they are prohibitively expensive. It strikes me that the people who need this testing the most — people with affected children, people who have been through multiple terminations for medical reasons or have had multiple dead babies — those are the people who likely can’t afford specialized, targeted testing.

As one “well meaning” person said to me, “What does it matter if the baby is already dead?”

I guess that is the big question for insurance companies, too. It rolls out like this — the exome testing via the Baylor College of Medicine costs about $12,000 out of pocket. That’s a small car! Because our insurance company (bless them) decided to cover the test, it would be about $3,500 out of pocket. BUT if the billing comes from the our hospital instead of Baylor — meaning we pay the hospital and the hospital pays Baylor — it is “in PPO” and we pay $750.

* As a snarky side-note — the insurance company covers $12,000 in genetic testing for the benefit possible future babies if we want to take the risk of having more. BUT they will not cover IVF or pre implantation genetic testing. BUT they will cover terminations for medical reasons. BUT they don’t cover Mirena intrauterine birth control if I don’t want to take the risk. Smarter people than me must be making these decisions. The medical code also suggests that the mothers of dead babies don’t need counseling, BUT it will cover anti-depressants if they need them.

Now what if our insurance company said no to the exome? That would have left us with three options — ignore the fact that some gene in myself or my husband leaves our children incompatible with life OR pony up $12,000, OR sign up for a research study.

I haven’t done much research on research studies, mostly because I didn’t have to — my insurance company said “yes,” and did said it without a fight. Research studies, if you meet the criteria, are free or mostly free for the patients. The cons, if you will, include the length of time for results (a year or more as compared to four months). My genetic counselor also mentioned that the study looks for what the study needs — not for what you or your geneticist might be looking for.

And no matter what, the findings are subject to “human interpretation.”

At the end of the day, private exome testing costs dollars and a lot of them. Keep in mind that my disastrous year of dead babies (two in eight months) included two surgeries and millions of dollars in diagnostics. I hit my out-of-pocket maximum ($6,000) plus my monthly deductible, plus my CO-pays. AND my husband didn’t have the healthiest year, either. We will write off his out-of-pocket maximum ($6,000), too.
All in all, my wages for this full year paid for most of what we owe in medical bills.

The good news is that exome sequencing is getting cheaper all the time. Years ago, Steve Jobs (think Apple) had his exome done for $100,000.

But I don’t think he had to worry about how to pay for his “out of PPO” costs.