• E-mail
• Print
• Comment
• Font Size
• Digg
• del.icio.us
• Discuss article

Scrapping Plans for Health Study Hurts Children

Posted on: Thursday, 16 February 2006, 21:00 CST

By Lois M. Collins Deseret Morning News

The president's budget proposal contained a nasty surprise for American parents, pediatricians and children's advocates recently: It scrubbed plans for the most unique long-term, cause-and-effect study of children's health ever proposed.

The National Children's Study was ambitious, to be sure. And costly, too. It was also, advocates state passionately, terribly overdue. And now they're scrambling to keep that dream alive.

In 2000, Congress created the study and more than $50 million has been spent since that time planning it and naming study sites, including the University of Utah and Salt Lake, which are supposed to be a "vanguard" site and one of the earliest to kick off enrollment.

The plan is to get pregnant women enrolled in the study so their pregnancies can be tracked. When the babies are born, they'll be tested and followed and data collected for at least the duration of their childhood and teen years.

Ever wonder about nature vs. nurture? For the first time, says Dr. Edward B. Clark of Primary Children's Medical Center and the local principal investigator, the answer to that question might be tantalizingly close. The study was designed to track not only genetic and health issues, but the environmental factors that might influence them.

No one seems willing to say out loud that the president's budget sold out the relatively powerless, nonvoting kid population in favor of a study with an entirely different focus proposed by the agency that headed up human genome research. But there is no question that in place of the children's study, a long-term study focusing primarily on adult health issues has been proposed in the president's budget, to be conducted by the human genome crew, with a this-year price tag that very nearly mirrors what was not allocated for the children's study.

No one's challenging the need for more genetic research into diseases like Alzheimer's, Parkinson's, diabetes and heart disease, which will be part of the proposed study. But issues that begin in childhood impact how healthy adults are. We are the accumulation of our experiences, exposures, health habits and challenges and a lot more. It's not like adults wouldn't benefit from learning about children's health. Or like adults don't have a vested and heartfelt interest in children, either.

But the proposed swap, however you couch it, just continues a trend that historically has guided children's medical research in America: Do as little as possible. Don't worry about it.

It was not that long ago that medicines treated children as small- size adults, basing dosing information on a percentage calculation of body size. It took an incredibly fierce lobby to get the message across that children might metabolize drugs differently, respond to them differently, use them differently. Think about aspirin. Adults take it every day with no problem. But it turns out it's not a good idea for children because in some it can cause a nasty condition called Reye syndrome, which can be life-threatening.

It is only in recent memory that companies creating drugs that might be used to treat children have tested them on children for factors like safety and efficacy. The Food and Drug Administration now requires a youth-testing component in such cases.

One of the most compelling parts of the proposed defunding story is the willingness of federal public officials to stop a project before they reap benefit, despite incredible outlays of money and time and brainpower. Too often, they stop just short of completing what they started.

This month, the Centers for Disease Control and Prevention posted its final report on whether it is feasible to study health problems caused by radioactive fallout, concluding such study is a good idea. But last March it killed just that study, two-thirds completed and $8 million already invested, which was being conducted by U. researchers.

A well-conducted study is years in the planning. In the case of the children's study, the planning is ongoing, despite the fact it's not part of the president's budget proposal, which does contain language actively shutting it down. Those involved hope they'll be able to convince Congress, which actually controls the purse strings, to fund it, so they're not yet winding down.

As for the new proposed genetic study, what's to say that a few years from now, when the planning is done and it's ready to roll, it won't be defunded by someone who thinks we should be doing a children's study? And a new round of planning will begin.

I quit making clothes a few years ago because it seemed like I always got to the button stage and stopped. I'd choose the fabric and buy it, cut out the pattern and pin it to the material, piece the bits of cloth together, even make the buttonholes. But I never seemed to actually attach a button. Instead, the so-close-to-done apparel would languish, as worthless as if I'd never gotten started at all.

At least, though, I was bright enough to see the pattern of my behavior and stop it. I quit wasting money and time on things I couldn't/wouldn't finish. Perhaps federal officials should give it a try.

Deseret Morning News staff writer Lois M. Collins may be reached by e-mail at lois@desnews.com

Source: Deseret News (Salt Lake City)

More News in this Category