Public health dollars should not be spent on noninvasive prenatal testing
(NIPT) unless and until the following happens.
Several of the NIPT labs have banded together to lobby state legislatures
and Medicaid commissioners to have their state programs pay for their genetic testing offerings. The lobbying message is that this is a matter of fairness, ensuring all expectant women, regardless of ability to pay, have access to cell free DNA screening (the more accurate name for NIPT).
But what the lobbying effort really is about is ensuring the labs get paid
by the most pregnancies possible each year.
There are about 5 million pregnancies annually in the United States that
would be candidates for cfDNA screening. Last I checked, the lowest price
offered by any of the labs is around $800. About half of all pregnancies in the United States qualify for Medicaid (as there is a kicker to the income level if pregnancy). This means then, if the labs’ lobbying efforts are successful, the Medicaid system could pay out $2 Billion each year to for profit labs.
Surely, that amount of money could be better spent.
Consider all the other services that Medicaid is already supposed to cover for those living with the tested-for conditions that are grossly underfunded:
waiting lists simply to get Medicaid coverage; woefully low wages for community living support staff; underfunded therapies; and the list goes on.
Now consider what that public money would be paying for if cfDNA screening was covered. cfDNA screening is just that: screening. It does not provide a definitive answer with its results. For Down syndrome, while it has a higher predictive value than conventional screening, it still has a 50% false positive rate for moms in their twenties and about a 25% false positive rate for moms in their thirties; for the other conditions it tests for, those false positive rates are much higher.
Further, unlike most every other medical testing you may undergo, nothing
can be done about the condition tested. There are no treatments pre- or
post-natally for the genetic conditions. Instead, the justifications for
committing such significant dollars traipse into the world of eugenics.
Researchers writing about the California prenatal screening program have
been explicit that the program’s purpose is to reduce the number of lives born with the tested-for conditions. These lives are “prevented” via abortion, with cost-effectiveness studies then valuing the lives avoided as “savings” to the Medicaid programs.
Given all of this, some may wonder why use taxpayer dollars at all to fund
tests offered by for-profit companies?
But that is not my argument here. Rather, my argument is that Medicaid
dollars should not be spent on cfDNA screening unless and until the rest of the information is funded.
Unless and until …
The professional guidelines justify recommending offering prenatal genetic
testing to all expectant women out of respect for a woman’s choice about what to do with her body and her pregnancy. Receiving a test result, confirmed through diagnostic testing (a further cost to the system), provides expectant mothers the choice of whether to continue their pregnancy knowing their child will be born with a disability or to terminate their pregnancies. Many moms who have underwent prenatal testing have said they were glad to know beforehand that their child would be born with a condition. And, most expectant women choose to terminate following a prenatal diagnosis.
But, the professional guidelines don’t simply recommend offering just the
testing. The guidelines go on and recommend offering expectant mothers genetic counseling, accurate written information about the conditions, and the contact information for local and national parent support organizations. Twenty states (by my count) have passed legislation requiring this balancing information either be provided or made available.
Yet, as a study reported in the spring of 2019 found, NONE of the testing
laboratories provide all of the information recommended by the professional guidelines of the American College of Medical Genetics (ACMG).
If the offering of prenatal genetic testing is medically and ethically
justified out of respect for a woman’s autonomy by giving her information, then each expectant mother should receive all of the recommended information. They are not, however, and this is due in large part because what gets reimbursed gets provided in a medical setting.
Genetic counseling is reimbursed more as the exception than as a rule
amongst state Medicaid programs. The recommended written information has received funding from only a handful of states (actually I believe only two, Massachusetts and Washington). And, providing the contact information for national and local support groups is hit or miss.
What’s more, as opposed to the $800 per test cost for cfDNA screening,
genetic counseling generally costs around $125 per hour, the recommended
information about Down syndrome can be purchased for around $11 (and is available online for free), and it costs nothing to provide the phone number to the national and local support organizations.
So, unless and until the balancing information recommended by professional guidelines is covered by Medicaid, Medicaid should not pay for cell free DNA screening.
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