People with Down syndrome are not costs to be avoided through prenatal testing

by Mark Leach from Down Syndrome Prenatal Testing:

I shouldn’t even have to say this.

The dinner
At last week’s American College of Medical Genetics & Genomics (ACMG) annual meeting, I was invited to attend a dinner hosted by one of the Non-Invasive Prenatal Screening (NIPS) laboratories. I was surprised to be on the guest list, and looked forward to enjoying a steak.
The room was packed–a far larger gathering than I was expecting. The other attendees were typical of those attending the ACMG meeting: medical geneticists, genetic counselors, and industry representatives.
The host company presented on their latest research. On how more conditions beyond aneuploidies may be added to the panel of conditions screened for and how a recent study suggested applying NIPS beyond high risk moms. It was what I expected, as far as the presentation went. Unfortunately, so was one of the last questions asked during Q&A.

The question
An attendee raised her hand and asked whether, given the higher cost of NIPS as compared to traditional screening, had the company shown that its test was “cost-effective.”
I saw red.
If you’re not familiar with that phrase, typically “cost-effective,” when associated with prenatal testing, means this:

• Are the costs of offering NIPS to the 99+% of pregnant women not carrying a child with Down syndrome off-set by the number of those Down syndrome pregnancies that are identified … and aborted.

This is how the math is done: NIPS testing costs over $1,000 per test for all but one of the laboratories. Various studies have estimated that a life with Down syndrome costs a certain amount more to the healthcare system–the most recent number I saw was $350,000. So, a prenatal screen is “cost-effective” if 348 mothers not carrying a child with Down syndrome accept the test, costing $348,000, but the one pregnancy actually with a child with Down syndrome is identified and “avoided,” “prevented,” aborted.
Sitting there as undoubtedly the only attendee who had a child with Down syndrome, I felt my chest tighten.

The simplest way to raise awareness about Down syndrome this holiday season

by Mark Leach from Down Syndrome Prenatal Testing:
In 2007, I attended my first ever National Down Syndrome Congress conference. Campbell Brasington, a genetic counselor from Charlotte, North Carolina, shared the simplest way to raise awareness about Down syndrome and engage in medical outreach. 
This is the time of year when many of us will be mailing out Christmas/Holiday/End-of-Year cards to our friends and family. Typically, these annual missives will include a photo of the family and, for some, a written update on the family’s activities. Brasington made the following simple suggestion for families to raise awareness about Down syndrome:

Include your obstetrician on your holiday card mailing list.

She explained that for many OBs, their experience with individuals with Down syndrome is the relatively brief moment of when they deliver a child with Down syndrome. If you have a child with Down syndrome, you can show how this child your OB delivered is growing up and what your child is doing. You can provide your OB a glimpse of what a life with Down syndrome can be like.
This simple tip isn’t limited just to OBs, but it would be good to at least start there. Parents could also consider adding the labor and delivery department of the hospital where their child was born, as well as the medical professionals who provided prenatal care, like genetic counselors, geneticists, and maternal-fetal medicine specialists.
This year, a group of active moms launched a social media campaign to encourage families to follow this simple awareness raising tip. I have graciously been credited with this idea, but Campbell Brasington is who deserves the recognition as the originator of this great, easy idea.
And, also, this year, Lettercase, the publisher of materials through the National Center for Prenatal & Postnatal Down Syndrome Resources (where I serve as the bioethics specialist), is offering a great deal:

This year, please consider sending a Holiday card to your medical provider that includes a photo of your loved one with Down syndrome. From #GivingTuesday to Friday, December 6, anyone who makes a $15 donation to the National Center for Prenatal and Postnatal Down Syndrome Resources will receive a Medical Provider Holiday Gift Pack that includes “Understanding a Down Syndrome Diagnosis,” “Delivering a Down Syndrome Diagnosis,” our new testing pamphlet, and 5 National Center postcards.

If you missed it, today is the last day for this great deal. This gift pack is for anyone who cares about their local obstetricians having the medically-reviewed and recommended materials to be provided patients receiving a prenatal test result for Down syndrome. You can make a $15 donation to the National Center to get this gift pack at this link.
If you have a loved one with Down syndrome, I hope you will follow through with this simple tip of including your OB on your family’s holiday card list. If families did this each year, it would provide examples of what a life with Down syndrome can be like for the OB and other health care providers to share with their patients when they first deliver the diagnosis. Who knows: your family’s photo may be the one shown to a new or expectant mom to say, “well, this is how one of the families whose child I delivered is doing.”