In June 2001, a study was published by the Center for Disease Control and Prevention indicating a stark racial disparity in the median life spans of people with Down syndrome. The study, based on an analysis of 34,000 multiple-cause mortality files from 1968 to 1997, indicated that the median age at death for white people with Down syndrome is 50 years, while it is 25 years for black people and 11 years for people of other races.
Although NDSS has operated on the assumption that a level of socio-economic disparity exists (due to poor health care, access to information and other factors), and has worked in a variety of ways to address it, NDSS was dismayed to learn that the racial disparity is so stark.
NDSS reinforces the study's assertion that there is no evidence indicating that people with Down syndrome who are black or of other races are more likely to develop life-threatening conditions associated with Down syndrome.
By working through a national network of parent support groups and a new health care professional program, NDSS has tried to address the larger issues of education (both professional and parental), community support and access to quality medical care. It is clear that more needs to be done that is specifically targeted to those who are black and of other races.
This issue is of utmost importance to NDSS and we are working on ways to address it. Further study to determine the causes of this disparity are critical. By determining the causes, NDSS can then be better equipped to address them and reduce this tragic disparity.