Questions RE: Down Syndrome Prenatal Testing Being an “Essential Health Benefit”

In a longer piece to be published later, I explain how the Department for Health & Human Services (HHS) has issued a proposed regulation where prenatal testing for Down syndrome will likely be covered as an essential health benefit (EHB) under the healthcare reform law, aka “Obamacare.” HHS is accepting comments on the proposed regulation through December 26, 2012. So, this Boxing Day, please celebrate with me by submitting a comment on the proposed regulation. Below is the text of the comment that I submitted. Feel free to cut-and-paste it into a comment that you submit or revise to express your questions about the new regulations. To submit a comment, simply visit this link and, remember, do so by December 26, 2012.

My Comment

Please answer the following questions:

1: Will maternity care services require coverage for all recommended-services for prenatal testing for Down syndrome?

The Prenatally and Postnatally Diagnosed Conditions Act was passed in 2008, but still awaits funding. The Act recognizes that patients need to receive up-to-date information about the diagnosed condition; calls for a national hotline; and calls for funding parent support organizations and an adoption registry. The American Academy of Pediatrics and the American Congress of Obstetrician and Gynecologists recommend that patients are to be referred for genetic counseling prior to diagnostic testing and patients are to receive accurate information and referral to parent support organizations following a diagnosis. Will the HHS require these associated services if prenatal testing for Down syndrome is to be covered?

2: Why is prenatal testing for Down syndrome required as an “essential health benefit”?

There is no evidence that prenatal testing for Down syndrome improves health outcomes. For every study that reports expectant mothers valuing testing so they could be prepared, there is an off-setting study that finds increased anxiety and coercion from partners and medical professionals. A recent study found that prenatal testing information can be toxic to the mother’s well-being. Therefore, please explain why prenatal testing for Down syndrome can be considered an essential health benefit for purposes of insurance coverage?

3: Has a cost-benefit analysis been conducted to justify the cost of prenatal testing?

If every pregnant woman accepted prenatal testing, that would pose a $6 billion liability each year. Please answer whether HHS has conducted a cost-benefit analysis for prenatal testing for Down syndrome. If so, please provide the supporting documentation. If such an analysis has not been done, then what is the justification for covering prenatal testing for Down syndrome for health insurance reasons?

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