Thursday, October 3rd, 2013
Each week of the government shutdown, around 30 children will be prevented from receiving treatment for cancer and other illnesses through clinical trials, the National Institutes of Health announced this week. More from ABC News:
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John Burklow, a spokesman for the National Institutes of Health, estimated that 200 patients would experience these delays each week of the shutdown. Since 15 percent of these patients are typically children, and 33 percent of these children have cancer, that means the patients facing delays would include about 30 children per week, 10 of whom have cancer, he said.
Federal health programs are down thousands of employees, which hampers clinical trials and disease outbreak surveillance.
The NIH, for example, has had to furlough 14,700 employees – or 75 percent of its staff – as a result of the shutdown, Burklow told ABCNews.com. He expressed surprise that calls were even getting through, because he said his phone system had gone down this morning.
“Unfortunately, almost everybody is gone,” he said of his office. His staff in the media office has shrunk from 38 to one.
More than 1,400 ongoing clinical trials will continue at the NIH Clinical Center, which is the largest research hospital in the world, but it won’t be able to enroll any new patients in these trials or start any new trials during the shutdown, Burklow said.
“There are four new protocols [clinical trials] ready to start next week, and they won’t be starting during the shutdown if we’re still shut down,” he said.
As a result of the shutdown, the U.S. Centers for Disease Control and Prevention has furloughed 9,000 employees, rendering it unable to track multi-state disease outbreaks, said CDC spokeswoman Barbara Reynolds. These currently include the disease stemming from the brain-eating amoeba Naegleria fowleri, which killed a 4-year-old in Louisiana a few weeks ago, and the stomach bug cyclospora, which has sickened 643 people in 25 states since June.
“The vast majority of the CDC is actively in the process of shutting down,” she said. “We’ve gotten really good at trying to find outbreaks, but our strong network is getting weaker. … This is spotty.”
The seasonal flu program will also be shut down, which could affect the CDC’s ability to warn populations most at risk for becoming sick and its ability to create next year’s flu shot, Reynolds said.
Thursday, September 5th, 2013
A new series of US government-funded studies investigating the possibility of screening the entire genome of newborn infants is raising excitement among some parents, concern among others. At issue is whether such DNA mapping would help parents prepare and cope with their kids’ health conditions, or whether the tests would provide more information than parents can reasonably be expected to handle. NBC News has more:
Do parents even want to know what fate might await their babies? Can doctors find out anything useful medically? Do you get information that freaks you out? All over the country, thousands of newborns will be enrolled in this experiment, the National Institutes of Health announced on Wednesday.
They’re not necessarily looking for new diseases in the babies yet, says Dr. Eric Green, director of the NIH’s National Human Genome Research Institute (NHGRI). They want to know what happens if you even go down this road of whole-genome sequencing.
Now’s the time, he said, as companies begin offering these tests on the market and as more and more people seek to find out just what their genes say about their health. “Everything is moving so fast,” Green told reporters on a conference call.
“We really want to take advantage of this window of opportunity to answer key questions about the technical, ethical, social implications while we have a chance to do it,” Green added. “If it turns out this is something that is worth doing, we would answer questions about how to make it most effective.”
Green’s genome institute and the National Institute of Child Health and Human Development (NICHD) has set aside $25 million for the next five years to study the matter, starting out with $5 million to four institutions: Brigham and Women’s Hospital and Boston Children’s Hospital; Children’s Mercy Hospital in Kansas City; the University of California, San Francisco and the University of North Carolina at Chapel Hill.
Each center will take a different approach. For example, UCSF will test blood drops previously collected from 1,400 California children who were already given newborn screening tests. Boston Children’s will recruit 480 newborns starting early next year, giving half the standard screening and half an extra genome test.
Most of the 4 million children born in the U.S. each year get a heel-prick test that takes a drop of blood to screen for genetic diseases such as phenylketonuria, sickle-cell disease, cystic fibrosis and thyroid disorders. The precise panel differs from state to state but usually covers around 30 disorders.
One reason to do the tests, says NICHD director Dr. Alan Guttmacher, is to intervene early, before the child gets sick. Phenylketonuria or PKU is a classic example. It’s an inability to process an amino acid called phenyl lanine, which can build up in the brain and cause permanent damage. “By knowing the baby has the disease early, parents can modify the baby’s diet to remove phenylalanine and prevent damage,” Guttmacher said. “Prevention is the only effective solution.”
The heel-prick tests cost around $100. Whole-genome screening covers not only known genetic defects, but the entire DNA map. Commercial tests – which don’t look at every stretch of DNA – cost about $5,000.
Image: Infant getting blood test, via Shutterstock
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