Down syndrome: not a costly burden to be prevented

MoneyResearch now shows that a child with Down syndrome costs less than $3 a day more in health expenses than a child without Down syndrome. This research should cause obstetricians, genetic counselors, expectant parents, and policymakers to revise their view of how costly a life with Down syndrome really is (or isn’t). 

Less than $3 a day

A team lead by Dr. Brian Skotko, an assistant professor of Pediatrics at Harvard Medical School and co-director of the Down Syndrome Program at Massachusetts General Hospital, analyzed medical claims from birth through age 18 of over 5,000 children with Down syndrome and compared those claims to those of more than 20,000 children without Down syndrome. Their analysis found that, on average, a child with Down syndrome costs over those 18 years just over $18,000 more in out-of-pocket expenses to parents, i.e. those costs not covered by insurance.

Breaking that figure down further, the article, which appears in the American Journal of Medical Genetics, Part A, explains that medical costs are higher in the first three years, but then drop to just under $600 more per year between the ages of 13 and 18. With the annual average cost being over $18,000 for 18 years, then families could expect, on average, to have just over $1,000 out-of-pocket expenses per year for raising a child with Down syndrome as compared to raising a child without Down syndrome. This works out to be just $2.77 per day in out-of-pocket costs, or the price of a coffee from the coffeehouse of your choice.

The clinical impact

The press release and reporting on the findings focus on how the relatively low additional costs should cause both health care providers and expectant parents to reconsider how costly it will be to raise their child with Down syndrome. Expectant couples regularly cite the expected higher costs of raising a child with Down syndrome as one of the factors they consider when receiving a prenatal test result and deciding whether to continue the pregnancy. Similarly, obstetricians also cite the expected higher additional costs as a factor for couples to consider when counseling their patients.

Dr. Skotko relays some anecdotal evidence that is validated by his team of researchers’ findings:

The authors note that some out-of-pocket costs such as emergency room visits and prescriptions were actually lower for children with Down syndrome across all age categories.  “Many parents have told me that their child with Down syndrome is the least expensive one in their family,” says Skotko … . “On the other hand, many obstetricians have mentioned to me that these children end up being very expensive for their families, so I expect the results of our study will surprise many physicians but have many parents nodding their heads.”

With prenatal testing’s purpose being to provide information to families so they can make reproductive decisions and prepare for their child, this research should be incorporated into future counseling so that families have an accurate expectation of the relative cost of raising a child with Down syndrome.

The policy impact

Not covered in the reporting or the press release on the research is the impact these findings should have on public policy decisions to fund prenatal genetic testing.

As discussed at length at several other posts, prenatal genetic testing is publicly funded throughout the United States and in most Western nations. These programs are justified by cost-effectiveness studies that argue the millions spent on tests for women who are not having a child with Down syndrome are still “worth it” because the cost of the lives of Down syndrome detected by prenatal testing and “prevented” (via abortion) exceeds the costs of paying for prenatal testing. These studies are out-dated and poorly designed, but they are relied upon by policymakers to continue funding prenatal testing.

The research that a child with Down syndrome costs, on average, just under a quarter of a million more in total healthcare costs (paid for by both health insurance and out-of-pocket), is drastically lower than the “costs” assigned by these cost effectiveness studies to lives with Down syndrome. Typically, those studies claim a life with Down syndrome costs the public healthcare system in the millions, when Skotko et al.’s research cuts that cost down to a fraction.

Obstetricians and genetic counselors should counsel expectant parents with accurate information. If policymakers are going to be so crass as to determine whether funding a medical procedure that offers no treatment options based on the number of lives that can be eliminated by that testing procedure, then they should at least base their funding decisions on accurate accounting of the cost of a life with Down syndrome. Factoring in the drastically reduced average costs make the cost effectiveness studies arrive at the exact opposite conclusion: that public funding of prenatal testing vastly exceeds any costs to be prevented via abortion of lives with Down syndrome.

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