In this Section:
What conditions are screened for in Indiana?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
- State preferred name: multiple co-A carboxylase deficiency
About Newborn Screening in Indiana
Newborn screening is a special test that helps identify babies who are at risk for certain conditions. A newborn baby may look healthy, but can have a serious condition that cannot be seen. These conditions can be treated if found early. Indiana state law requires that all babies in Indiana be tested for 46 conditions. This test must be done before the baby leaves the hospital. Babies born at home must have this test within one week of birth. Before every baby goes home from the nursery, he or she has a small amount of blood taken from their heel. This is called a heelstick. The blood from the heelstick is used to test for a specific group of conditions. If anything concerning is found, the Newborn Screening Laboratory contacts the baby’s doctor. Make sure your doctor has a current phone number and address so they contact you if your baby needs further testing. Since so many of these conditions can start doing damage to your baby’s health immediately after birth, is it very important you follow your doctor’s instructions as soon as possible so life-saving treatment can begin.
How is Newborn Screening Paid for in Indiana:
The fee for the screening is $90. The fee will be reviewed annually by the Indiana State Department of Health.
Policies and Resources
If you have religious objections to this testing, you may say “no” to the testing in writing and sign a form advising you that your hospital, doctor, and clinic staff are not responsible if your baby develops problems because those disorders were not identified and treated early.
Support for families:
One of the concerns some families have when they find out their child has a condition detected through newborn screening is the increased cost of health care. However, Indiana has laws and programs that will help families whose children have these rare conditions.
First Indiana requires accident and sickness insurance policies and group health maintenance organizations to provide coverage for medically necessary foods, such as formula that is necessary to meet the dietary needs of those individuals with amino acid, organic acid or urea cycle metabolic conditions. As long as a physician prescribes the formula to treat those conditions, insurance plans must cover it just as they do other prescriptions under your plan. Therefore, there may be copayments or deductibles associated with the formulas. However, they are legally prohibited from treating these differently than any other prescription would be treated under your plan.
In addition to the regulations for private insurers, the state newborn screening program has a centralized program which provides follow-up, condition management, family counseling and support, as well as medical equipment, supplies, formula and other materials for those with conditions discovered through newborn screening. Additionally, the Children’s Special Healthcare Services (CSHCS) provides payment for medical services for children that financially qualify for the state funded program and also has an active Community Integrated Services program that collaborates with other state and local programs, families, youth and providers that support CYSHCN. For more information, please contact Shirley Payne at SPayne@isdh.IN.gov.
The Indiana Sickle Cell Program offers counseling and penicillin for children identified by newborn screening with sickle cell disease. In addition, the program has partnered with community-based partners to provide educational resources statewide. To learn more about the eligibility requirements needed to receive help, contact Indiana State Department of Health, Newborn Screening Program, 2 North Meridian Street, Indianapolis, IN 46204 or call 888-815-0006.
Storage and Use of Dried Blood Spots:
Once your child’s dried blood spots (DBS) have been screened for the conditions indicated in the newborn screening program, there remains some dried blood in the form of “residual dried blood spots” (also known as “waste blood specimens”)
There are several reasons why DBS are kept. First, good laboratory practices require that samples (such as dried blood spots) be kept for a period of time after testing is done, in case a test needs to be checked or repeated. DBS are also used by Indiana’s newborn screening laboratory to help develop new tests for newborn screening and to make sure that laboratory equipment is working correctly. Currently, Indiana’s newborn screening law allows leftover DBS to be used for medical research after newborn screening is completed. Indiana State Department of Health will not use a child’s DBS for medical research unless the child’s parent or guardian has agreed to allow it to be used. If a parent/guardian has agreed to allow their child’s DBS to be used for medical research and changes their mind, they should call ISDH Genomics & Newborn Screening Program at (888) 815-0006.
The Indiana State Department of Health may also use health information about you or your newborn for screening, to provide health care services, to obtain payment for screening, for administrative purposes, and to evaluate the quality of care that you or your newborn receives. The information will not be sold to any organization or entity.
The NBS program may change its policies at any time subject to applicable laws and regulations. You may request a copy of their current policies or obtain more information about Indiana privacy practices by contacting the ISDH Privacy Officer at 2 N. Meridian St. , Indianapolis, IN.
The Newborn Screening Program must have your written permission to use or give out personal or health information about you for any reason that is not described in this notice. You can revoke your authorization at any time, except if the Newborn Screening Program has already acted because of your permission by contacting the ISDH Privacy Officer at 2 N. Meridian St., Indianapolis, IN. You have a right to ask the Newborn Screening Program not to use or share your or your newborn’s information in the ways listed in this notice. However, they may not be able to comply with your request.
If you believe that Indiana has not protected you or your newborn’s privacy or has violated any of your or your newborn’s rights you may file a complaint by calling or writing any of the following: ISDH Privacy Officer, at 2 N. Meridian St., Indianapolis, IN, or the Indiana Attorney General’s office – Consumer Protection Division, 302 West Washington Street, 5th Floor, Indianapolis, IN 46204 at 317-232-6330, or toll free at 800-382-5516. You may also contact the regional office of the Department of Health and Human Services, Office for Civil Rights at 233 N. Michigan Ave. Suite 240, Chicago, IL, 60601 at (312)886-2359; (319) 353-5693 (TDD), or toll free at 866-627-7748.