GONE: estimate reduced by 20% of people with Down syndrome in United States

Highlight of graph showing selective terminations for Down syndrome in green

In 2013, researchers estimated that the total number of people living in the United States was 40% less than the historically cited number. Three years later, that estimate has been revised down further by 20%.

New estimate of people living with Down syndrome

Dr. Brian Skotko, Frank Buckley, and Gert de Graaf have been doing the yeomen work of looking at demographic studies and crunching the numbers to estimate the total number of people living with Down syndrome in the United States. In 2013, a report (summarized at this post) estimated that around 250,000 individuals with Down syndrome were living in the United States as of 2010 (the latest year for available data). In the 2016 report, Skotko, Buckley, and de Graaf have revised that estimate down to around 200,000.

Those numbers show a startling reduction by percentages:

• The historical estimate of people living with Down syndrome in the United States had been about 400,000–a number still reported by many Down syndrome organizations, like the National Down Syndrome Society and Global Down Syndrome Foundation, and possibly your own local organization.
• With the revision down to just over 200,000, that represents a 50% reduction from the historical estimate.
• Compared to the earlier estimate, the reduced number by 50,000 is a 20% reduction from the 2013 estimate of 250,000.

74% termination rate/30% reduction rate

The report further shares a chart on the impact abortion has had on the number of live births of children with Down syndrome versus the number of pregnancies selectively terminated for Down syndrome:

Following the legalization of abortion in 1973, the chart shows how almost with each passing year, the number of selective abortions (shown in green) has grown. The report, and particularly the chart, shows what may be counter-intuitive regarding the relation between termination rate and reduction rate.

A 2012 study estimated that about 74% of pregnancies with a prenatal result for Down syndrome are selectively terminated, i.e. a 74% termination rate. But, that does not equate to a 74% reduction in total births of babies with Down syndrome. This is because many parents do not opt to have prenatal testing and (as reported in this post) more women than ever are choosing not to abort following a prenatal result. Plus, not all pregnancies carrying a child with Down syndrome will result in a live birth due to natural miscarriage (as reported here). Therefore, while there is a 74% termination rate, only 30% of all live births are reduced due to selective abortion.

The report further notes that it is limited to before cell free DNA screening was introduced. One of the reasons given by the authors for the number crunching is to establish a baseline against which to judge the impact of cfDNA screening.

Rare disease

In the post that summarized the 2013 report, I shared how the reduction of 150,000 estimated lives reminded me of the scene in Star Wars: A New Hope where Obi Wan Kenobi senses the eradication of life when the Death Star destroys Princess Leia’s home planet of Alderaan. I noted then, and note again now, that these estimates are estimating the number of people living with Down syndrome, so, by being less than an inaccurate historical estimate of 400,000, no actual lives have been lost.

But, still.

As the 2016 report notes, traditionally a disease has been labeled “rare” for public health planning purposes if there are fewer than 200,000 individuals with the disease. While I take exception to Down syndrome being considered a “disease” (it’s not contagious), it is significant that the number of people living with Down syndrome now hovers around that rare disease threshold.

Research dollars and public assistance funding are directed based on a condition’s prevalence: the greater the number, the more likely the greater the funding. With the revised, lower estimate, Down syndrome is now close to the level of being considered “rare,” and being rare may mean less funding for needed support services and research for treatments and therapies.

Or it could mean worse.

Eugenic beancounting

Others could see this revised, lower estimate and decide that funding needs to be shifted to other priorities. Rather than fund Medicaid programs to provide needed assisted therapies and services that have allowed for both the mean and median age of people living with Down syndrome to increase substantially over the last 60 years (as the report also shares), funding could be allocated to make Down syndrome even rarer.

Since the dawn of prenatal testing, academics, ethicists, lab CEOs, and public health officials have justified public funding of prenatal testing based on the “costs” of lives with Down syndrome that can be “avoided” or “prevented” by prenatal detection and abortion. With the revised, lower estimate, I expect others will read the 2016 report about lower number of lives but increased life expectancy to make the cold case that public funds would be better spent on prenatal testing in order to “prevent” these lives that are “rare” but living longer and therefore costing public healthcare systems more.

When that happens, then Obi Wan’s lament of hearing voices crying out in terror and then suddenly silenced will not be about revised estimates, but actual lives being reduced.

Then, something terrible will have indeed happened.