What Conditions are Screened For in Montana?
Amino Acid Disorders
- State preferred name: congenital hypothyroidism
Fatty Acid Oxidation Disorders
- State preferred name: long-chain 3-OH acyl-CoA dehydrogenase deficiency
Organic Acid Conditions
About Newborn Screening in Montana
Most babies are healthy when they are born. Montana tests all babies because a few babies look healthy but have rare health conditions. If these conditions are detected early, it is possible to prevent serious outcomes such as intellectual disability or death. Once treatment begins, the chances of your child leading a long, healthy life are greatly improved.
A few drops of blood are safely collected from the baby’s heel on a special card, usually 1 or 2 days after birth. The Montana Public Health Laboratory receives the blood cards, has the testing done, and reports the results. Approximately 12,500 babies were born in Montana in 2008. Seventeen babies (1 in 735) were treated for a condition detected by the newborn bloodspot screen. The newborn screen may need to be repeated if the bloodspot sample was not adequate to complete testing, or if the first test suggested a possible health problem. Follow-up services for babies with conditions detected by newborn screening are provided under a contract administered by Montana’s Children’s Special Health Services (CSHS). This includes support for regional pediatric specialty clinics, such as metabolic clinics. Please go to Montana's Expanded Newborn Screening website for more information.
How is Newborn Screening Paid for in Montana?
The newborn screening cost is $112.25. It will be covered by the state for those who are eligible for Medicaid benefits in Montana.
Policies and Resources
Montana's rule requires birth attendants and birth facilities to screen all newborns born in the state for these potentially fatal conditions. If, after hearing all the benefits of newborn screening and the risks involved in refusing testing, a parent/legal guardian may refuse bloodspot, hearing, or pulse oximetry screenings. In that case, the parent/legal guardian must sign a waiver for the newborn's medical record in which they accept responsibility for adverse consequences. A copy of this waiver must be provided to the department.
Support for families:
One of the concerns many families have when they find out their child has a condition detected by newborn screening is the possibility of increased health care cost. Fortunately, Montana has various laws and programs that try and help individuals and families with the costs of caring for a loved one with a metabolic condition. By law, your health care provider should provide you with an overview of available services and programs throughout Montana in order to help you and your family navigate this unfamiliar territory. An overview of a few of the available services is listed below, however it is encouraged that parents contact their newborn’s physician to learn about what is best for them.
Children's Special Health Services (CSHS) provides limited financial assistance for specialty care and therapies for children and youth with special health needs. To be eligible, a person must be a Montana resident with an eligible condition who lives in a household that meets CSHS income standards. Financial eligibility determination is based on income in accordance with federal poverty guidelines. Many families receiving financial assistance from CSHS also have private insurance. If your child has an inborn error of metabolism detected by newborn screening, the department has many covered benefits that may be provided for your child. These include evaluation, diagnosis and treatment of the condition as well as medical foods for the treatment of metabolic disorders, including supplements prescribed by a physician that are not funded by other sources. There may be a maximum dollar amount an individual is eligible for and is largely dependent on the availability of state funds.
CSHS also sponsors metabolic clinics throughout the state to serve those who need assistance managing their metabolic condition detected through newborn screening. CSHS also administers a contract for newborn screening follow-up services. You do not have to qualify for financial assistance to attend a specialty clinic within this department as the clinic services are provided free of charge to all. This clinic provides evaluation and diagnosis of metabolic disease and assists with long-term management of dietary, developmental, and other issues that may be associated. The treatment team includes a metabolic specialist, a neurologist, a nutritionist, a social worker and a nurse. You can obtain more information regarding metabolic clinic services on their website here and from the newborn screening follow-up coordinator.
In addition to health support programs provided by the state, Montana requires group or individual disability policies and certificates of insurance to cover the treatment of metabolic conditions. Coverage must provide for clinical services, medical supplies, and medical foods taken under physician supervision. The insurer is allowed to require durational limits, deductibles and co-insurance for the diagnosis, treatment and monitoring of the metabolic condition as long as the cost-sharing mechanisms are applied in the same way as they are to other illnesses under your plan.
If your family does not have private insurance, Healthy Montana Kids Plan (HMK) is available to provide comprehensive health care coverage to Montana residents who are 18 years of age or younger residing in households with a combined family income at or below 250% of the federal poverty level. If your child is insured under this plan, the prescription drug benefits will include the medical foods that are necessary to treat inborn errors of metabolism.
Storage and Use of Dried Blood Spots:
Blood is collected from the heels of all Montana newborns on special paper. Circles are "punched" from the cards to test the blood for all of the different conditions included in the newborn screening process. The Montana Public Health Laboratory (MTPHL) in Helena receives the cards from hospitals or midwives, performs the testing, and reports results to health care providers. After the newborn screening process is done, there will be some blood left on the cards which is called “residual dried blood spots”.
Montana has a policy, which is approved by the state medical officer that allows the storage of the residual dried blood spot cards in a secure freezer. The cards are destroyed after one year. During this time, specimens may be re-tested to check the original test results without having to obtain another sample from your newborn. Montana may also use these specimens for validation and comparison studies for new test development. If used within the state for those purposes, be assured that the process is anonymous, meaning your child’s name or information is never attached to the samples.
All newborn screening results are maintained for at least two years in the laboratory secure computer system. MTPHL has a very strict policy regarding the handling of the newborn screening results to make sure private health information only goes to the healthcare professional that provides medical care for the baby. While newborn screening cards are a potential source of DNA, as is all blood, the screening tests performed on Montana babies measure levels of chemicals in the blood.
Also, be advised that Montana has an arrangement with the Wisconsin State Laboratory to perform some of Montana’s newborn screening tests. Therefore, Montana sends part of the specimen card to Wisconsin for testing. Wisconsin also destroys the specimens they receive.
Click here to see a copy of the blood spot card used in Montana.