GONE: 150,000 fewer people with Down syndrome in the U.S.

disappearingThe long-stated estimated number of people living with Down syndrome in the United States had been 400,000. This number has been reduced by almost 40 percent.

The number 400,000 was based on birth estimates: take whatever the birth estimate was, apply it as a percentage to total number of births and total number of lives, and 400,000 was the number that was arrived at. In 2013, the Journal of Pediatrics published a study that revised this estimate based on two key factors. The study resulted in a revision on the Centers for Disease Control website.

Life expectancy

The first factor was the life expectancy for those with Down syndrome. The 2013 report shared an impressive statistic: since the 1960’s, the average life expectancy for individuals with Down syndrome has increased by 456%. However, even with this greatly expanded lifespan, those with Down syndrome still have a life expectancy that is 15-20 years less than those without Down syndrome. The 400,000 figure had not taken into account that while a certain number of babies were born in a given year, those lives would not live as long as other babies. This factor accounts for one of the key reasons the number has been revised.

Maternal age

The other key factor is maternal age. With the incidence of Down syndrome correlating to the age of the mother, the prevalence of babies born with Down syndrome fluctuated over the years based on the age of the mothers giving birth. In the 1970’s, there was a dip in the number of mothers in their 30’s and 40’s giving birth. So, even with the life expectancy being on the upswing during the 1970’s, there was a dip in the number of babies born who would enjoy those longer lifespans.

Revision to 250,700

Factoring in these figures along with birth prevalence, and some sophisticated statistical sampling, resulted in the revision to 250,700 individuals with Down syndrome estimated to be living in the United States–a reduction of almost 150,000 from the traditionally quoted 400,000.

The significance of this revision is that it will inform future “planning for medical care and other services for persons with Down syndrome.” What that means is unclear.

Perhaps, Down syndrome will be seen as a rare condition such that prenatal screening testing programs cannot be shown to be “cost-effective” because the testing is simply not preventing as many lives as expected under previous cost analyses. On the other hand, Down syndrome already suffers from an underfunding of research as compared to other conditions; with Down syndrome now being estimated as even rarer, it is not hard to foresee arguments that investing in Down syndrome is simply not worth it since there are fewer people living with the condition than previously estimated.

“I feel something terrible has happened.”

When this news was first reported, through references in other writings, I could not help but think of the scene from Star Wars where Obi Wan Kenobi reacts to the Death Star destroying Princess Leia’s home planet:

(Advance to 2:00 minute mark).

Now, the destruction of Alderaan and a revision to the estimates of lives with Down syndrome is not an exact comparison. While reading that there are 150,000 fewer people with Down syndrome living in the United States, it must be appreciated that this is not because there were 400,000 living and then 150,000 were lost. Rather, this is just a mathematical recalculation of estimates–there were never 400,000 living at one time in the U.S.

Nevertheless, realizing that Down syndrome is even rarer than what had been believed for the entirety of my daughter’s life still made me feel as though something terrible has happened, and maybe will still yet happen. And, I expect if any other population were announced to have been reduced by almost 40 percent–Blacks, Jews, homosexuals, women–then many others would share mine, and Obi Wan’s, reaction.

What’s your reaction to the revised number of 250,000?

Comments

  1. Another great article, Mark, about something so important. What a travesty for our society, if these numbers continue to dwindle. I cannot imagine life without my son, and Down syndrome is a part of who he is. Yes, it presents challenges, but that tiny little extra chromosome has changed our lives so dramatically and so definitely for the better. The whole world could use more kindness, compassion and open-mindedness — just a few of the lessons we’ve learned from our Charlie.

    • Thank you, Maureen. Your comments about the impact Charlie has had reflects what may be lost in the context of prenatal testing counseling if there are fewer lives to make that impact on others.

  2. Indeed, something terrible is happening. Whatever the numbers are, they would be at least double if it wasn’t for prenatal screening and diagnosis. A whole group of humanity reduced to nothing thanks to science and choice.

    • You left out the third step in your syllogism: screening, diagnosis, and abortion.

      • Fair catch Mark, I was trying to cover them under the guise of “choice”.

      • Personally Mark I don’t think you need to include “abortion” as that is just the meas of achieving this genocidal/eugenic activity, the modern day gas chamber equivalent if you will, but the means of obtaining the reduction in a certain devalued sector of society is not the focus (and therefore not the issue) – its the discrimination against people with DS that is the real issue. Society devalues this group of people so much so that they are willing to let their tax payer dollar be spent on getting rid of them. Heartbreaking.

        • Yes, it is heartbreaking. There are many deeply disturbing threads to the topic. What stands out for me is how the medical profession have targeted the Down syndrome community is such an inhumane and hateful way. A profession that once upheld defending life is now guiltily of the most horrendous crimes against an innocent and loving section of the human race. Mind you, Doctors were the most represented group in the Nazi party when they started promoting what became the T4 programme in Germany in the 1930s. The attitudes and intent we see now are the same, the tools have just changed to targeted and selective abortion.

  3. Dear Mr. Leach,

    I hope you don’t mind if I call you Mark; the number of people living in the US ‘endowed’ with Down syndrome is inconsequential, and the fact that the number is tracked by the Centers for Disease Control makes it more so.

    Fact(s):

    • There are children born every year that are ‘endowed’ with Down syndrome (DS).
    • There are children that die every year whether or not they are born with or without DS.
    • The number of children aborted due to the possibility of being born with DS is a question that only the parents of these children can answer, and one that they will only answer when they face their creator, and not recorded by the way.
    • Your numbers make sense, but what question are you attempting to answer?
    • How many children are aborted that have been misdiagnosed?
    • My wife and I are ‘pro-choice’ and given that we did not know prior to their birth, we are forever grateful that we never had to face the choice, to live or not because life without Kyle and Hunter would be a life less lived.
    • What about the number of children born with co-occurring DS and Autism? And if given a choice based on a test how many children are out there that have simply been “labeled” DS or multiple disability.
    • How many children are unknown to the Centers for Disease Control because the parents refused to have their child listed as a disease?

    John Langdon Down simply described the condition and through the years many have attempted to eliminate it or ignore it . . . But these children, no matter the number exist and they exist for a reason.

    As parents of children ‘endowed’ with DS, we look not for any way to take away the condition . . . but to better understand ‘it’ and learn from ‘them’.

    Albert Einstein put it best “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

    • Hi Kelly
      Just registering my disagreement with your comment “The number of children aborted due to the possibility of being born with DS is a question that only the parents of these children can answer…….”. You can’t abort a child on the grounds of sex (well, not in most countries), race, colour etc etc so neither can you on the grounds of disability-that discriminatory. Aside from the prejudice involved with this issue is my belief that if parent choice is resulting in the reduction of a sector of society in genocidal numbers it’s fundamentally wrong. It’s inhumane. It’s anti-human. And while we are rightly horrified at the moment with what is happening in Syria at the moment we can hardly point the finger whilst we have these detect and destroy (via a cruel method) screening. Just my thoughts.

  4. Mark: thank you for bringing this information to light and giving it an article all its own. As much as this does feel like sad news if you love someone with Down syndrome, it is the truth. And before we can have an honest discussion about the future of Down syndrome, it helps to start with the truth.

  5. SElina McDonald says:

    Thanks for article I’m with Maureen Wallace I couldn’t imagine my life without my 24 yr old downs son .yes it’s been very hard at times but I wouldn’t change it for nothing . Shawn’s rockin the Xtra chromosome 🙂 jus wished that he had dental &vision coverage I think every child wit disability should have full coverage like anyone else there’s not enough help for them out here && they should get help before most others do

    • I love your post & how you wrote it. Way to go Selina for having a positive, good, and funny attitude to the situation. I agree completely with you 🙂

Trackbacks

  1. […] to include even more diverse photography and to reflect the most current research (such as the revised population estimate of individuals with Down syndrome). It did so in November 2013. The Lettercase pamphlet has been […]

  2. […] 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 […]

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