The March of Dimes Release Annual Report Card on Newborn Screening Program: A Newsmaker Interview With Jennifer Howse, PhD

July 22, 2005

July 22, 2005 -- Editor's Note: On July 12, 2005, the March of Dimes issued a state-by-state report card on the adoption of the U.S. Department of Public Health and Human Service's Newborn Screening Program, which was developed by the American College of Medical Genetics.

While many states are in the process of adopting the guidelines that include 29 tests for metabolic conditions and hearing deficiency, there are still about 43% of the four million babies born in the U.S. each year who are screened for fewer than 10 of the recommended 29 conditions. As of June 1, 2005, Mississippi is the only state in full compliance, offering all 29 tests. The 29 guidelines and participating states are available online at: http://Marchofdimes.com/nbs or http://Marchofdimes.com.

To further examine some of the reasons why all of the states have not fully implemented the recommendation to screen all newborns for the full panel of tests and to discuss costs and risks involved with the testing, Medscape's Charlyne Blatcher Martin interviewed Jennifer Howse, PhD, president of the March of Dimes.

Medscape: What prompted the initial development of the Newborn Screening Program and the March of Dimes issuance of the Newborn Screening Program Report Card?

Dr. Howse: Each state reports on a regular basis which newborn screening tests they are carrying out within their state. The March of Dimes compiles the data and issued their report on June 1, 2005, based upon information from that data. The initial report about the recommendations for expanded newborn screening was initiated by the Health Resources & Services Administration. They asked the American College of Medical Genetics to prepare a report with recommendations that would represent expert opinion about which newborn screening tests should be routinely offered for all newborns. That is the genesis of the 29 conditions that should be screened.

The impetus for the March of Dimes to issue the report card is that the states are not doing all 29 of the screening tests, and we wanted parents to be aware of which tests were being offered in their state.

Medscape: Why is the full panel of tests not required in all states?

Dr. Howse: It is the state's responsibility -- that means that the state has the responsibility and the authority to designate which tests will be routinely given to newborns at the time of birth. States generally have indicated that they wish to follow the expert recommendations of the national report that is endorsed by the March of Dimes. States indicate that they are trying to move in the right direction. There is recognition on the part of the states as this is a must do. But, states have different priorities and different legislative cycles and different ways of determining what will become law in their state. It's the job of the March of Dimes and their bipartisan advocates to reach out to legislators in every state and urge those governors and legislators to sign bills that require the 29 tests and the resources to carry them out.

Medscape: What are some of the costs involved for hospitals and parents?

Dr. Howse: Cost is less than $100 dollars for the total package. In some states it's a lot less but all can do it for less than $100 dollars per newborn. Some hospitals charge special fees to the parents, and therefore, the hospital's costs are covered.

The real cost to the state is to get in place the technology, the equipment, and the staff to carry out the laboratory analysis of the tests and follow-up. But, once the states have established a state laboratory or bought laboratory services from another state, then that is the major investment, and the rest is very straightforward and very very cost effective for the states to get the equipment in place and set up the laboratory capability or to purchase the laboratory capability to take the little card with the newborn blood drop, send that off to a laboratory that can run those 29 tests, and then get the results back to parents and the doctors.

Medscape: Do Medicaid and other insurers cover any of these costs?

Dr. Howse: Some plans cover newborn screening. We ask parents to inquire about what is covered. Medicaid covers about one third of all births in this country. Medicaid reimburses for the costs of labor and delivery and hospital stay for the mother and baby. Covered in that rate is the modest cost which is less than $100 -- average $60 dollars in that reimbursement program.

Medscape: Are there risks associated with the newborn screening tests?

Dr. Howse: Not with the tests themselves. They are simple, safe, and efficient. I would say that one risk is getting a false positive -- a baby on the borderline of having or not having a condition -- but what happens is that if the baby tests positive, the baby is retested. If negative, it was a false positive. If the test is positive again, it is a true positive and that's where the medical team and the parents spring into action to bring lifesaving treatment to the newborn. To me the risk is in not having a newborn testing program that covers these 29 conditions. Why would you risk death or devastating health conditions that can be lifelong when there is lifesaving treatment?

Medscape: What are some of the findings in the March of Dimes state-by-state Newborn Screening Program Report Card?

Dr. Howse: In America, there is one state offering all 29 tests, Mississippi. Just a few weeks ago since the issuing of the report card in July, California went green by offering 20 or more of the tests.

There are 23 green states which means that 38% of the four million newborns in the U.S. are getting 20 or more of the tests; 12 states are yellow which means that 20% of the four million newborns are getting 10 to 20 of the tests; and, 15 states are red which means that of the four million newborns, 43% of all births in this country are getting fewer than 10 tests.

In a conversation with the March of Dimes' chief advocate in California, they have detected 19 newborns with devastating metabolic conditions that can be treated. That tells the whole story. For every one of those 29 conditions, including hearing, there is a treatment. But, detection has to occur with the newborn and if it doesn't occur right away, these conditions can rapidly become devastating health conditions. That is why the March of Dimes is so passionate about getting these 29 tests implemented in all of the states.

Medscape: What are some of the ways that the March of Dimes encourages states to adopt full participation and offer outreach to parents and would-be advocates?

Dr. Howse: People are interested in helping to move this ahead. They can contact their state chapter, local division, and contribute funds. They can go online to Marchofdimes.com/nbs or Marchofdimes.com, or write letters to their state's legislators and governors.

Next July, the 2006 report card will be issued, and I think we'll see a tendency towards green, which is a good thing. But, the March of Dimes is going to stay on this case until all states are green, and all states offer the 29 tests.

Reviewed by Gary D. Vogin, MD

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