As the result of legislation passed by the 2005 General Assembly, the Virginia Department of Health expanded its Newborn Screening Services to include tests for 17 additional inherited disorders. VDH already screens for 11 genetic disorder, such as sickle cell, phenylketonuria (PKU), and hypothyroidism. Among the new tests are those for cystic fibrosis and isovaleric acidemia.
Beginning March 1, 2006, all newborns in Virginia are screened for 28 disorders identified through dried-blood-spot screening within a few days of birth, unless the parent or guardian objects on religious grounds. A few drops of blood are taken from the baby's heel and placed on special blotter paper, which is sent to the state's Division of Consolidated Laboratory Services for testing. VDH Virginia Newborn Screening Nurses coordinate necessary follow-up measures, such as notifying health care providers if an infant requires retesting. Follow-up activities continue until the child has a normal screen, is diagnosed, or reaches 6 months of age, when the age-specific newborn screening methods cannot longer be considered reliable.
Test results are provided to the child's doctor, clinic, or hospital. Generally, parents are told of the results only if there is the possibility of a problem. Parents are encouraged to ask their baby's doctor about test results.
Patron - Jeffrey M. Frederick
Summary as passed: Broadens the Commonwealth's newborn screening program for genetic disorders to include approximately 30 or more conditions that cause mental retardation, serious disability, or death if left untreated.
The screening tests to be included in Virginia's panel of disorders will be consistent with, but not necessarily identical to, the uniform condition panel recommended by the American College of Medical Genetics in its report, Newborn Screening: Toward a Uniform Screening Panel and System [ACMG Report]. Upon the issuance of a panel of recommended tests by the federal Department of Health and Human Services, Virginia's testing program will be consistent with, but not necessarily identical to, the federal guidance document.
The Board of Health's regulations must include a list of conditions for which newborn screening tests are conducted pursuant to § 32.1-65, follow-up and referral protocols and necessary provisions to implement the newborn screening services, and any services available to the infants and children through the Children with Special Health Care Needs Program.
The mandate for the increased testing will become effective on March 1, 2006; however, the Board of Health is required to promulgate emergency regulations. The second enactment clause of a 2002 Act of the General Assembly that required certain funding is repealed in order to ensure the integrity of the law. This bill incorporates HB 2511 and HB 2801.
Full Text - Click House Bill 1824 to link to the Legislative Information System and read the full text of this bill.
VDH Implementation - March 2006.
Note: This bill is identical to Senate Bill 1184.
SB 218 - MCAD Deficiency:
Newborn testing.
Patron - Patricia S. Ticer
Summary as Passed by House and Senate: Adds to the list of inherited disorders for which newborn testing is required by the Commonwealth, a fatty acid oxidation disorder known as MCAD or MCADD, i.e., medium-chain acyl-CoA dehydrogenase, which inhibits the proper metabolizing of stored fat. Individuals with MCAD, if left untreated, have episodes of hypoglycemia and Reye's syndrome, which may result in fever, vomiting, coma, disorientation, and fatty infiltration of the liver.
Implementation of this test will require the purchase of tandem mass spectrometers, which are technologically advanced analytic instruments that can be used to test newborns for more than 20 treatable metabolic disorders by sorting molecules in blood samples according to weight in a similar fashion to machines that sort coins.
This provision will only become effective one year after the date that sufficient funds are appropriated or otherwise secured to (i) support the Virginia Department of Health's costs for start-up professional and family education and (ii) the purchase of the necessary equipment for implementation of the testing program in the Division of Consolidated Laboratories.
Full Text - Click Senate Bill 218 to link to the Legislative Information System and read the full text of this bill.
VDH Implementation - March 2004.
SB 1007 - Congenital Adrenal Hyperplasia:
Health; newborn testing.
Patron - Patricia S. Ticer
Summary as Passed - Adds testing for congenital adrenal hyperplasia to the tests required to be performed on every newborn in the Commonwealth to prevent mental retardation, permanent disability or death.
Those infants whose parents or guardians object to the testing because of religious practices or tenets continue to be exempt.
The bill has a delayed effective date of January 1, 2002.
Full Text - Click Senate Bill 1007 to link to the Legislative Information System and read the full text of this bill.
VDH Implementation - In 2001, VDH worked with the Division of Consolidated Laboratories (DCLS) to add this test to the required newborn screening panel. Testing began January 1, 2002.
DCLS is responsible for purchasing and testing equipment and incorporating the screen into existing testing.
VDH and DCLS collaborated on developing a curriculum on CAH that was used in training staff at hospitals who will test newborns for CAH. VDH contracted with a nurse to develop and plan training, which took place in November and December 2001. At the same time, DCLS tested the equipment and beginning a pilot program to ensure the quality of the testing.
VDH is responsible for developing simple brochures for health care professionals and parents on CAH. Brochures were distributed in hard copy and are available from the Virginia Genetics Program.
HB 542 Phenylketonuria:
Board of Health's responsibility for treatment.
Patron - Robert F. McDonnell
Summary as Passed - Requires the Board of Health, out of such funds as may be appropriated, to include both the medical formulas and low protein modified foods (foods that are not naturally low in protein) in the food program for children with phenylketonuria and any pregnant woman who is diagnosed as requiring treatment for phenylketonuria.
Currently, Virginia's program only supplies parents with the medical formulas, at a cost of no more than two percent of their annual income; however, no low protein modified foods are provided.
The bill will provide reimbursement from the Department for low protein modified foods in an amount not to exceed $2,000 per diagnosed person per year.
Phenylketonuria is an inborn error of metabolism in which the body is unable to process an amino acid (phenylalanine) that, unless treated early by restricting phenylalanine intake, results in brain damage and mental retardation.
In Virginia, all infants are tested for this disease at birth. The bill will not become effective unless an appropriation effectuating the purpose of the bill is included in the 2000 appropriation act signed into law by the Governor.
Full Text - Click House Bill 542 to link to the Legislative Information System and read the full text of this bill.
VDH Update: There are three Metabolic Treatment Programs for children identified through the Newborn Screening Program:
University of Virginia
Division of Medical Genetics
Department of Pediatrics
Virginia Commonwealth University, Medical College of Virginia
Department of Pediatrics
Eastern Virginia Medical School
Department of Pediatrics
Division of Medical Genetics
601 Children's Lane
Norfolk, Virginia 23507-1921
Each program offers physician and nutrition consultation. Special food products are also provided to low income families.
SB 699 Congenital Adrenal Hyperplasia:
Examination of certain infant testing.
Patron - Patricia S. Ticer
Summary As Passed - Requires the Commissioner of Health to examine the efficacy of requiring testing of infants for congenital adrenal hyperplasia (CAH), a developmental condition that is difficult to diagnose, with slowly developing symptoms, resulting in sudden death among affected infants early in life.
This bill is an uncodified act.
The Commissioner would be required to seek expertise from pediatricians and others and the parents of affected children and to report to the 2001 General Assembly.
Full Text - Click Senate Bill 699 to link to the Legislative Information System and read the full text of this bill.
Senate Document No. 27, 2001 - This report, A Study of the Feasibility of Adding Congenital Hyperplasia to Newborn Screening Tests, is available from the Virginia Legislative Services, telephone 804-786-6984--Ask for "Senate Document Number 27, published in 2001."
Human Genome Published
Feb. 12, 2001 - Widely considered the greatest scientific breakthrough of our time, the mapping of the human genome officially became public Monday, allowing a sharing of information that promises to revolutionize the understanding and treatment of diseases.
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Contact us at sharonk.williams@vdh.virginia.gov
Sharon Williams, R.N., M.S.
Virginia Genetics Program Manager
Virginia Department of Health
Division of Child and Adolescent Health
109 Governor Street, 8th Floor, Richmond, Virginia 23219
Phone: (804) 864-7712 FAX: (804) 864-7807
