States don’t mandate adequate newborn screening

The March of Dimes in White Plains, NY, says that while every baby born in the United States undergoes some level of newborn screening, many parents don’t realize that states determine the disorders to screen for, and most do not meet the recommendations made by the March of Dimes’ medical specialists. In 2000, the agency recommended that all babies receive a screening for nine metabolic disorders and receive a hearing test.

"These screenings can sometimes mean the difference between a healthy start in life and disability or even death for a baby," March of Dimes spokeswoman Michele Kring tells State Health Watch. "The tests recommended by the March of Dimes lead to reliable diagnosis of conditions for which there is a proven treatment for a newborn’s metabolic or hearing deficiency."

While nearly all babies born in the United States undergo some newborn screening, the number of screened disorders varies greatly by state, says March of Dimes president Jennifer Howse.

"While a few states may screen for even more than these nine metabolic disorders, only 11 states now provide all nine tests recommended by the March of Dimes. Expansion of newborn screening has been a March of Dimes priority for three years, and our chapters have worked closely with governors, state legislatures, and health departments to increase access to these important tests. States spend an average of $24.99 per baby on these tests, according to a recent report from the U.S. General Accounting Office. The tragic cost of a child disabled by a genetic disorder is inestimable to families and to society," she adds.

Newborn screening is done by testing a few drops of blood, usually from the newborn’s heel, before hospital discharge. If a result is positive, the infant will usually be retested and then given treatment as soon as possible, before becoming seriously ill from the disease.

Currently, parents seeking screening for disorders not covered by their state must arrange for a private lab to do the testing, often with additional out-of-pocket expense. Ms. Howse says parents are encouraged to check with their state’s health department to determine which newborn screening tests are offered.

In some states, approval and funding of expanded screening may be in development. In other states, she says, legislators may need encouragement to give attention and resources to these programs. Ms. Howse says the March of Dimes is urging Congress to appropriate funds to Title XXVI of the Children’s Health Act to provide states with funds for newborn screening equipment, training, and public/professional education.

Ms. Kring says the agency believes the time when all 50 states will test for all nine disorders is a "long way off" even though the states currently are doing "a grave injustice to babies." She says she believes parents would be shocked to learn how little some states are doing.

Population trends are changing

"The differences among states are often historical," Ms. Kring tells State Health Watch. "Legislators and health officials look at the population and see only certain diseases and think that’s all they need to be concerned about. They don’t realize how mobile the population has become in the last 50 years. And they don’t realize that metabolic disorders cross all population boundaries."

She says the tests being promoted by the March of Dimes have been accepted as important by almost all pediatric authorities and associations. And the organization also advocates for testing only for disorders for which there is an immediate treatment available. She reports that the issue with hearing tests is more complicated because states allow some hospitals to opt out of the testing.

The March of Dimes contends that at least 90% of all newborns in every state should have a hearing test.

Eleven states now screen for the nine metabolic disorders:

  • Illinois;
  • Indiana;
  • Iowa;
  • Maine;
  • Massachusetts;
  • Mississippi;
  • Nevada;
  • New York;
  • Oregon;
  • Rhode Island;
  • Wisconsin.

Eighteen states offer five or fewer tests: Alabama, Arkansas, California, Florida, Kansas, Kentucky, Louisiana, Missouri, Montana, New Hampshire, Oklahoma, South Dakota, Tennessee, Texas, Utah, Washington, West Virginia, Wyoming. The District of Columbia and Puerto Rico also offer fewer than five tests.

[For more information, contact Michele Kring at (914) 997-4613 or go to www.marchofdimes.com.]