States Missouri

Missouri currently screens for 59 conditions. Each state runs its program differently, for more detailed information please visit their website at http://health.mo.gov/living/families/genetics/newbornscreening/index.php.

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What Conditions are Screened For in Missouri?

About Newborn Screening in Missouri

Program Overview:

Newborn screening programs in the United States were the first population-based screening programs for genetic conditions and signaled the integration of genetic testing into public health programs. The mass screening of four million infants per year in the United States has been heralded as a successful, cost-effective program that reduces illnesses, disability, and death associated with inherited conditions. The universal acceptance of newborn screening for specified conditions since 1960 attests to the undeniable benefits that flow from testing and providing appropriate treatment and intervention. Early diagnosis of conditions identified by newborn screening can lead to early treatment and prevent or minimize significant morbidity and mortality.

Missouri’s Newborn Screening Program aims at early identification of infants who are affected by certain genetic or metabolic conditions by testing the newborn before they are discharged from the hospital, usually within 24-48 hours of birth. Currently, the State of Missouri’s Newborn Screening Program offers screening for many different health problems that may benefit from early diagnosis and treatment. Early identification is essential as timely intervention can significantly reduce the chance of morbidity and mortality and associated disabilities.

Most babies will have normal newborn screening results. However, when an abnormal result is identified and reported to the infant’s physician by the State Public Health Laboratory, providing a current phone number and address is important. Once contacted by your physician, following the physician’s instructions as soon as possible is crucial. Follow-up activities can be relatively simple, such as the submission of a repeat specimen to the State Public Health Laboratory. In more complex cases, a team of individuals involved with the Newborn Screening Program will coordinate efforts to obtain appropriate follow-up specimens and possible treatments.

The Newborn Screening Program is a collaborative effort of the Missouri Department of Health and Senior Services, genetic tertiary centers, accredited cystic fibrosis foundation centers, hemoglobinopathy resource centers, physicians and other health professionals and families. The Missouri General Assembly passed initial newborn screening legislation in 1965. Through the years additional screens were added to the newborn screening panel of tests. The Missouri Department of Health and Senior Services is responsible for directing the Newborn Screening Program. In 1985, legislation created the Missouri Genetic Advisory Committee. The members of this committee are appointed by the Governor and meet at a minimum of once a year.

In 2008, new legislation was passed that directs Missouri to screen for lysosomal storage diseases including Krabbe disease, Pompe disease, Gaucher disease, Niemann-Pick disease and Fabry disease. The Missouri Department of Health and Senior Services may add additional lysosomal diseases as well.

How is Newborn Screening Paid for in Missouri?

Currently, a fee of $85 is charged for each newborn screening specimen collection card (initial screen and repeat if necessary). This fee covers the cost of the testing and part of the follow-up costs. This fee is usually covered by third party payers, such as private insurance or government health programs. However, no individual in Missouri will be denied the newborn testing required by law because of inability to pay.

Policies and Resources

Opt-Out:

While it is discouraged, a parent may decline the newborn screening in Missouri if their religious beliefs conflict with the process. If this is the case, the parental refusal must be documented in writing after viewing a physician-provided packet of educational information that describes both the benefits of newborn screening as well as the risks of not testing your newborn. The written parental refusal will be placed into the child’s medical record and sent to the Missouri Department of Health and Senior Services.

Support for families:

After the testing is complete, Missouri provides assistance for families who have children with some of the conditions indicated during the newborn testing. Subject to availability of funds, the health department will provide formula for children under five years of age who require a special diet and who have exhausted all other sources of payment. If a child with a condition is between six and eighteen years old and requires a special diet, they will have access to nutrition assistance if they have exhausted all other sources and their family’s income is less than 300% of the poverty level. If a child’s family earns more than 300% of the poverty level, they will have access to nutritional items on a sliding scale. Once the child reaches eighteen years of age, applicants to the nutritional support program will have an income-based test to determine eligibility. Private insurers in Missouri are required to cover many expenses related to these conditions so it is important to contact your insurance provider to see what they will be covering for your child.

Financial Eligibility Guidelines are based on the U.S. Department of Health and Human Services Poverty Income Guidelines at, or below, 185% of poverty. All third party payers must be utilized before DHSS will consider reimbursement.

If not already done so, the applicant/family is required to apply for MO HealthNet benefits for the applicant. The following website lists the Family Support Division office location. Choose a county from the list, then click on “GO”. http://dss.mo.gov/

Missouri provides additional support for specific conditions. For example, care and treatment for individuals suffering from sickle cell anemia is available for individuals whose family has exhausted all other forms of payment, including private insurance and government assistance programs such as Medicare and Medicade. Individuals suffering from cystic fibrosis also have assistance available including continuous drug therapy, special equipment and treatment if they are unable to pay for the entire cost of the services after they have exhausted all other forms of benefits and payments.

Adult Cystic Fibrosis (21-years-of-age and older)

Adult Hemophilia (21-years-of-age and older)

Adult Sickle Cell (21-years-of-age and older)

Metabolic Formula Program (Not age specific)

Contact your baby's health care provider for information on further state services available or go to the Missouri Department of Health and Senior Services: Directory of Local Public Health Agencies to find out public health services close to you.

Storage and Use of Dried Blood Spots:

In accordance with Missouri law, the leftover newborn screening samples will be stored for five years. During this time, the leftover newborn screening samples may be used for anonymous public health studies approved by the Missouri Department of Health and Senior Services. If samples are released for research, the samples will not include any information indicating the child’s identity. The law allows the parent the right to request their child’s specimen to be returned to them after all screening has been completed, to be destroyed after all screening has been completed, or to be stored but not released for anonymous research. To exercise one of these three opt-out options, the parent or legal guardian must write a letter to the State Public Health Laboratory requesting such. They may do this at any time during the five years of storage. If the parent does nothing, the leftover newborn screening sample will be available to be used for anonymous research. At the end of the five years of storage, the leftover newborn screening sample will be destroyed.

To see a copy of the blood spot card used in Missouri click here.

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