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Re: GEN - Newborn ScreeningFrom: Anna Meenan, MD (annam@uic.edu)Thu Aug 10 17:04:37 2000
At Wed, 9 Aug 2000, art fougner, md wrote: > >Newborn screening is currently under review as a national consensus is >being developed. The March of Dimes is weighing into the discussion as >per this post from Reuters - > >-------------------------------------------------------------------------------- > >-------------------------------------------------------------------------------- >-------------------------------------------------------------------------------- >-------------------------------------------------------------------------------- >March of Dimes challenges newborn screening guidelines > >-- >-------------------------------------------------------------------------------- > >-------------------------------------------------------------------------------- >WESTPORT, Aug 09 (Reuters Health) - A national task force has outlined >-------------------------------------------------------------------------------- >guidelines for screening of newborns that are being challenged by the >March of Dimes as favoring costs over infant health. > >The Newborn Screening Task Force, which met in Washington, DC in May >1999, addressed such issues as the need for state public health agencies >to disseminate model guidelines for newborn screening, the need for >agencies to develop innovative testing technologies, and the rights of >parents to be informed about screening and to refuse screening. > >The task force was sponsored by the American Academy of Pediatrics and >the Health Resources and Services Administration, and it published its >report in the August issue of Pediatrics. > >"Although there is much in the report with which we agree, we take issue >with it in several respects," March of Dimes president Dr. Jennifer L. >Howse said in a statement. "There are several specific recommendations >for newborn screening programs that we think should have been included >in the report, but weren't." > >Among other recommendations, the organization says that all infants >should receive the same core group of screening tests, tests for even >rare diseases should be given to all newborns if early detection will >affect a child's health, and all infants should receive the best >available test regardless of cost. > >"When newborn screening tests for all treatable conditions are >universally available and the quality of the tests is assured, it may >well turn out this effort will be economically beneficial to health >insurers," Dr. Howse said. "Nevertheless, the March of Dimes believes >the primary consideration should always be the health of babies." > >In an interview with Reuters Health, March of Dimes spokesperson Todd P. >Dezen added that the organization wants newborn screening to become >uniform in the US through the adoption by all states of a core group of >screening tests: tests for phenylketonuria, congenital hypothyroidism, >congenital adrenal hyperplasia, biotinidase deficiency, maple syrup >urine disease, galactosemia, homocystinuria, and sickle cell anemia. > >The March of Dimes commentary will be published in the September issue >of Pediatrics. > >Pediatrics 2000;106:389-422. > >-Westport Newsroom 203 319 2700 > >any thoughts? > >art > >-- >art fougner, md > >A series of 1000 cases begins with but a single anecdote. > I'm not sure why the concern over cost. Those tests are so cheap to run, especially when more than one is being run at the same time. The real costs are in the administration of the program, but even so the savings on future medical costs more than pay for the costs of the program with just PKU and Thyroid testing. Adding other tests doesn't add much at all. Around here we are doing Neogen screening on top of the state program (Illinois, which mandates most of the currently available tests). Neogen tests a battery of like 30 conditions, all for 25 or 30 bucks. It covers all the mandated state tests plus a bunch more, so parts of it are kinda redundant, but the state won't let hospitals that offer Neogen opt out of state testing. The big concern here is that diagnosing a metabolic disorder in a baby will lead to future uninsurability, which is a legitimate concern, but when I see what some of these kids go through before they finally get diagnosed with some of these obscure disorders, it makes sense to me to pick it up early on a quick blood test. My own middle kid was diagnosed with congenital thyroid dysplasia on a newborn screen, just a few months after Illinois added TSH to their thyroid screen (his T4 was 12 but his TSH was 25 so it never would have been picked up before TSH was added). I have always been impressed anyway by how much information they can get from those tiny spots of blood.
-- Anna Meenan, MD
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