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People with Down Syndrome Living Longer

But gap between whites and minorities is vast

THURSDAY, June 7, 2001 (HealthDayNews) -- Down syndrome babies can look forward to a much longer life than they could 30 years ago -- but the difference between the lifespans of whites and people of color with this condition is a gap of staggering size, says a government report.

Whites with the birth defect in 1968 had a median life span of just two years, a figure that reached 50 in 1997. The median life span for blacks with Down syndrome -- less than a year in 1968 -- hit 25 in 1997, half as long as that of whites. For other races the median age of death in 1997 among people with Down syndrome was 11.

"These differences in survival of people of different races is nothing new. But what's surprising here is how large the discrepancy is for various [racial and ethnic] groups," says Dr. Jan M. Friedman, a medical geneticist at the University of British Columbia in Vancouver and lead author of the study. It appears in this week's issue of the Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report.

Although the life expectancy for whites with Down's has risen steadily since the late 1960s, blacks did not begin to see gains until the early 1980s, the study found. For other racial groups, the improvements didn't appear until the mid-1990s. Roughly 87 percent of people with Down syndrome in the study were white, 11 percent black and the rest other races. The researchers looked at the death records of more than 33,000 people.

Because the researchers gathered their information from death certificates, which don't always specify race, they have no way of knowing what groups make up the "other" races category, says Dr. Sonja Rasmussen, a CDC geneticist who worked on the study. However, it probably includes Hispanics and Native Americans, she adds.

Friedman, who conducted the research while on sabbatical at the CDC, says the differences in life span for Down's babies probably stem from many factors, from access to care, to the rate at which they receive surgery, to repair heart defects.

"We know there are some differences that have led to the overall improvement [in life expectancy], but why it's been delayed so much in blacks and other racial groups compared with whites we really don't know."

Down syndrome, also known as trisomy 21, is a chromosomal disorder occurring in roughly one in every 800 live births -- the same rate regardless of race -- in the United States. The condition, which produces varying degrees of mental retardation and a range of physical deformities, is detectable early in pregnancy and many parents elect to abort affected fetuses, thus lowering its incidence.

Roughly half of babies with Down syndrome suffer congenital heart defects that in the past severely curtailed their life expectancy. They are also more prone to deadly childhood leukemia.

Since the 1960s, however, advances in cardiac surgery and better cancer care have greatly improved the outlook for Down syndrome babies with heart problems, Friedman says. Now, more than 90 percent of infants with the genetic defect survive their first year, compared with less than half in the middle 1900s.

For most of the last century, infants with the condition were immediately sent to live in institutional settings. But in recent decades, perhaps as a result of medical progress, parents have become far more willing to raise Down's babies, who, if given the opportunity, are capable of leading almost normal lives, advocates say.

Jennifer Schell Podoll, a spokeswoman for the National Down Syndrome Society, says her group has long known about the racial disparity in mortality from the disorder. "That said, we were very surprised to see such a stark disparity. That's a very shocking revelation to us."

Schell Podoll says that, because there's no biological reason blacks and whites with Down's should die at such different ages, the explanation must be social and or economic. "What would affect it certainly is access to care, level of support, whether [a child] is put in an institution or cared for at home, all those kinds of social factors," she says.

While the report unveils alarming ethnic inequality, it also contains cause for cheer, Schell Podoll says. The gains in life span for Down's patients of any race over the last three decades are real and impressive, she says -- over the same period, the average life expectancy overall in America rose from 70 to 76, or only about 9 percent -- and they underscore the prospect that one day these patients should live essentially as long as people without the birth defect.

"The only thing that would hold it back would relate to the advance of medical technology. Some kids still die of childhood leukemia, and some have untreatable heart defects. But there's no reason why the socioeconomic factors should hold us back."

What To Do

For more information about Down syndrome, try the National Down Syndrome Society, or the National Association for Down Syndrome.

Or, you may want to take a look at these previous HealthDay stories on children's health.

SOURCES: Interviews with Jan M. Friedman, M.D., Ph.D., professor of medical genetics, University of British Columbia, Vancouver; Jennifer Schell Podoll, spokeswoman, National Down Syndrome Society, New York, N.Y.; Sonja Rasmussen, M.D., National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Ga.; June 8, 2001, Morbidity and Mortality Weekly Report
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