States Virginia

Opt-Out:

All newborns must participate in the Virginia Newborn Screening Program unless their parent or guardian objects on religious grounds. The person who administers newborn screening must include a statement of written objection by the parent or guardian in the child's medical record. All medical records associated with newborn screening are confidential. The Virginia Board of Health, the State Health Commissioner, and the Commissioner's agents may access newborn screening records. In addition, the Virginia Newborn Screening Program may release newborn screening results for research and statistical purposes or with the explicit permission of a parent or guardian. Publications may not disclose identifiable information.

Support for families:

One of the concerns some families have when they first find out their child has a condition detected through newborn screening is the increased cost of health care. Virginia has various programs that strive to help families afford the best care possible for their loved ones.

The Virginia Newborn Screening Program helps families navigate the services available to them. Program staff help facilitate the entry into medical and dietary management services as well as provide residents with information about available assistance for obtaining metabolic formula and low protein modified foods as well as metabolic supplements that are medically necessary to manage many of the conditions screened for in Virginia.

The Care Connection for Children (CCC) network in Virginia helps coordinate services for medically eligible residents through a statewide network of centers of excellence for children and youth with special health care needs (CYSHCN) that provide leadership in the enhancement of specialty medical services, care coordination, medical insurance benefits evaluation and coordination, management of the CYSHCN Pool of Funds (if the family meets the financial need qualifications), information and referral to CYSHCN resources, family-to-family support, and training and consultation with community providers on CYSHCN issues. If a family meets the financial need requirements for the Pool of Funds, they may qualify to receive metabolic formula at no cost as long as all other possible sources of assistance have been exhausted. Families can find out if they are medically and financially eligible for all services provided by CYSHCN at the VDH CYSHCN website.

If a family does not qualify for other programs that provide medical formulas at no cost, the VDH Formula Distribution and Purchase Plan provides certain metabolic formulas or mechanisms to purchase these metabolic formulas, to Virginia residents who meet the financial and medical eligibility criteria. Also, the VDH Food/Supplement Reimbursement Plan provides limited reimbursement for certain low protein modified foods and/or metabolic supplements to Virginia residents who meet the financial and medical eligibility criteria. For more information about both services, please contact the Office of Family Health Services by telephone at 804-864-7843.

Four metabolic treatment programs are available for children identified through the Virginia Newborn Screening Program and provision of food products for the management of Phenylketonuria (PKU). Metabolic treatment procedures are recommended, and such procedures are provided for infants in medically indigent families by the various healthcare providers provided below:

Children's Hospital of the King's Daughters
Department of Pediatrics
Division of Medical Genetics
601 Children's Lane
Norfolk, Virginia 23507-1921

University of Virginia
Division of Medical Genetics
Department of Pediatrics
Box 800386
Charlottesville, Virginia 22908-0386

Virginia Commonwealth University Health System
Department of Human and Molecular Genetics
Virginia Commonwealth University
Box 980033
1101 E. Marshal St. Rm 11-005
Richmond, Virginia 23298-0033

Children's National Medical Center
Rare Disease Institute
111 Michigan Ave NW

If a child has sickle cell disease, the Virginia Newborn Screening Program helps families get in touch with the Sickle Cell Awareness Program, which helps ensure children receive care and access to the Pediatric Comprehensive Sickle Cell Clinic Network, which provides support and medical care.

Storage and Use of Dried Blood Spots:

Once newborn screening is completed, there will still be some dried blood spots left on a child’s specimen collection paper. The retention of residual dried blood spots on newborn screening filter papers has recently emerged as a national issue stimulating an active debate from both parent groups and health professionals. Some states have utilized residual blood spots for purposes other than newborn screening activities, which has resulted in a variety of concerns from parents and parent advocacy groups. Similar concerns have been raised in Virginia by several parents. Each parent is provided with information specific to Virginia’s sample retention and destruction policy.

The state laboratory (Division of Consolidated Laboratory Services) holds residual blood spots for 6 months. Samples that tested with abnormal results are retained for 10 years. The primary reason for the expanded retention timeframe is that on occasion the sample may be retested to verify or disprove the original results. The Virginia Newborn Screening Program does not utilize retained blood spot samples for any purpose other than those for which it was originally intended nor does Virginia retain blood spot samples indefinitely. All samples are held in a secure location with access restricted to only authorized personnel until their destruction date. All newborn screening client records are maintained, stored, and safeguarded from authorized access required by law. Samples are destroyed by microwave/incineration.

By policy of the Division of Consolidated Laboratory Services, the testing laboratory, residual blood spot samples cannot be utilized for any purpose other than newborn screening. The samples are never released without notarized, written parental consent. They are never released for or utilized for research purposes, or for inclusion in other databases.

The results of newborn screening are only released collectively for statistical and research purposes. If used in this manner, they are released in a way that does not identify any infant as having a genetic disorder, as all medical records are treated as confidential.

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