Race and the Life Expectancy of People with Down Syndrome
Lisa Wade, PhD on June 10, 2013
This post originally appeared in 2010.
Most of us familiar with Down's Syndrome know that it brings characteristic facial features and delayed or impaired cognitive development. People with Down, however, are also more vulnerable than the general population to diabetes, leukemia, and infectious and autoimmune disease, and about 40% are born with heart defects.
For most of history, then, the life expectancy of people with Down was very low. But, with advances in knowledge and access to health care, life expectancy has risen dramatically… especially for white people:
The Centers for Disease Control explain that severity of Down does not vary by race, so most likely the cause of the gap in life expectancy is differences in the quantity and quality of health care.
Possibilities include differences in factors that may be associated with improved health in the general population such as socioeconomic status, education, community support, medical or surgical treatment of serious complications, or access to, use of, or quality of preventative health care.
This is just one striking example of the wide racial gap in health outcomes and access to care. We see data with similar patterns most everywhere we look. As examples, pre-term births, cancer diagnosis and treatment, and likelihood of living near a toxic release facility.
Morbidity and Mortality Weekly Report, via Family Inequality.
ow — May 3, 2010
What happened in the early 90s that made life expectancy for non-whites jump so much?
dmitriy — May 3, 2010
and why is the Age of the "others" at zero for quite a few years? does that mean they had no data or the sample size was too low?
Deaf Indian Muslim Anarchist — May 3, 2010
check out a recently released new documentary about a couple with Downs Syndrome.
http://womenandhollywood.com/2010/05/03/tribeca-2010-monica-and-david/
esther — May 3, 2010
I see another possibility - could it be possible that the syndrome isn't recognized as easily in people of other races? I know what a white person with Down syndrome looks like, but I don't think I have even seen one of another race. It might be similar for doctors. And of course some doctors might confuse some Down syndrome features (such as a flat nose or slanted eyes) with racial features, just because they haven't been systematically exposed to the difference between (e.g.) Asian slanted eyes and Down syndrome eye folds.
And if you don't know that a child has Down syndrome, there is a much lower probability of that child getting the right care. For instance, in such cases a heart defect might not be recognized until the heart starts to fail.
BTW, the graphs do look a bit too bumpy too me too - what was the sample size?
Nick — May 3, 2010
Just FYI, it's Down Syndrome, not Down's.
Lisa Wade, PhD — May 3, 2010
Thank you, Nick! Fixed.
SL — May 3, 2010
Esther - good thought, but as a pediatrician I don't think this is a likely explanation. Rarely is anyone diagnosed with Down Syndrome "late." Regardless of race, it's usually pretty obvious at birth to any pediatrician, and if it's not, at least there is something iffy about the patient's facial features or heart murmur that warrant attention. It generally happens in the nursery... "Huh, this baby looks a little Down Syndrom-y... and what's with this murmur... and her hands... time to have a conversation with the parents..."
I would surmise that whites have reached the age of 50 because that is when Alzheimer's, which essentially 100% of people with Down Syndrome will get if they live long enough, kicks in full force for them (decades earlier). Until we figure out better therapies for Alzheimer's, I would expect 50s to be the upper limit for Down Syndrome patients regardless of race.
Umlud — May 3, 2010
I look at graphs like this and wonder, "Where are the error bars?" (or range of errors)
If the increase in the number of blacks increased because of a relatively few really high-survival cases, this would be seen in the error bars. Similarly, if there is a lot of overlap between Blacks and Other, then it would imply that separating out the two might not be very useful in terms of a comparison.
Similarly, showing all the numbers on a linear-linear scale makes it difficult to see if no black children lived past one year-of-age in certain years, or if it is just a really small number. Using a linear-log scale would really help out here.
Basically, my gripe is that the graph -- without error bars -- doesn't give a lot of information for comparative purposes, especially between "Blacks" and "Others".
Um — May 3, 2010
This is horrible. The fact that I'm the first to acknowledge that (instead of looking for alternate explanations) is also horrible.
Mental Disorders 101 — May 3, 2010
I found your entry interesting do I've added a Trackback to it on my weblog :)...
hms — May 3, 2010
This is just one anecdote, but I had an uncle with Down syndrome who was born in the mid-1960s in the rural US to my grandparents, who were white and pretty low SES. I don't remember the details, but he had a congenital heart defect that could have been repaired at birth. Instead, doctors assumed that he would have a low quality of life anyway, so the operation wasn't worth it, and they never told my grandparents. His siblings only found out when looking through his medical records years later. He died of Down-related congestive heart failure in his early thirties--having lived, I might point out, a very full life with access to good medical care.
I would like to think that this kind of thing doesn't happen anymore, but this graph makes me wonder. Even if they have access to medical care, how many parents of babies with Down syndrome simply aren't told the truth about their children's medical needs and treatment options? And how many of those parents are not white?
b — May 4, 2010
Ok, I'm reading the page this came from and trying to make better sense of the graph.
So I think the number shown is, each year, the average age of all of the people with DS who died that year.
The total number of deaths shown for all years is 33,836. So that works out to an average of about 1167 per year over 29 years, but no information is given on number of deaths in any specific year and it seems unlikely that it's the same every year. The racial distribution for these 33,836 cases was 87.0% white, 11.9% black, and 1.1% other - so this graph represents:
29,437 deaths for white, or about 1015/year
4,026 deaths for black, or about 139/year
372 deaths for other, or about 13/year
With only an average of 13/year "other," it seems possible that there were some years with zero such deaths, but it's unclear how those would be represented on the graph. If they are represented by 0 (which would normally mean a death before 1 year old), then that might explain the sudden spike a few years later than when the black age started going up - if survival started getting better, maybe 0 died in 1990 or 1991, for example, and instead died several years later.
Either way, it's clear that there is a major problem here.
kib — May 4, 2010
This graph is absolutely shocking.
Can anyone find a similar graph with socio-economic/ income / healthcare coverage breakdowns?
hms says that his family were not told about options for surgery - but from what i can tell about the US, isn't it quite likely that black parents simply wouldn't be able to afford to deal with the complications?
Or a similar graph for a country where everyone gets healthcare?
Could there be a biological element to the life expectancy? e.g. higher rate of heart defects in black people with Down's? Do any doctors know if this is possible?
Louche — May 4, 2010
Not surprising. Ableism is everywhere. I have a high school teacher who was openly quite ableist and said something about wishing "stupid people" would just die. He complained that millions more dollars were spent on educating people with severe mental disabilities than on people with mental "gifts." This was the best teacher I had in high school.
By the way, this is 13 years old. I wonder if there's anything more recent.
Julio — February 7, 2013
this is some racist ass bs my hispanic brother is 33 and still alive
Torrie — June 12, 2013
Um have we forgotten that Down's folks get early onset Alizhimers? That's a big reason for the reduced life expectation
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Linkspam — June 21, 2013
[...] den 70er Jahren steigt die Lebenserwartung von Menschen mit Down-Syndrom kontinuierlich an. Für weiße Menschen allerdings mehr als für alle anderen, berichtet Sociological Images. [...]
TFA Nashville Diversity Group — November 21, 2013
[…] in bettering the outcomes for individuals with Down's Syndrome in the past few decades. However, the life expectancy for black people with Down's Syndrome is half that (25 years) of whit…. For those racially identifies as "Other," that life expectancy drops even further to around […]
Anita Garey — June 17, 2014
i would like to ask a question doe,s having down syndrome cause bone loss ?
my brotherinlaw was born with down syndrome and he is 47 the care taker to him which is the older sister said that the Dr has told them that he need,s a lard due to his bones are deterating now can anyone help me out he is in georgia we are in florida very concerend about his health this is a photo of my brother inlaw
Research and Adults who have Down syndrome | — August 28, 2015
[…] new? So, back to Google I go. What I found next was a graph that added to my confusion. That right there is scary stuff! AND! The data is from '68 to '97. So to […]
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