The intent of this subtitle is:
To educate parents and physicians regarding homozygous sickle cell anemia;
To monitor each affected infant’s health in that regard; and
To provide resources for detecting sickle cell disease and supporting individuals with sickle cell disease.
After securing the written approval of one of the parents or guardian of an infant at risk, the person in charge of the institution in which the infant is born, or the person who is required to prepare and register the certificate of birth for an infant born outside an institution, shall have administered a test for sickle cell anemia to the infant at risk.
In addition to testing, the Department shall undertake a prenatal education program for pregnant females in the population group at risk on the subject of sickle cell anemia and related diseases.
On determination of the presence of sickle cell anemia, the Department shall:
Notify in writing:
The physician of record or the institution at which the child is born; and
The parents or guardian of the infant;
Provide the parents or guardian of the infant and the physician of record with educational materials; and
Offer referral for genetic counseling.
Within 2 months after a positive finding of sickle cell anemia, a confirmatory test shall be administered and the results of this test shall be reported to the Department.
The Department and all persons shall maintain and treat all information derived from testing as confidential medical records as provided in § 13-109 of this article.
Notwithstanding any other provision to the contrary, the Department may disclose confidential information, obtained pursuant to this title, to the Department of the Environment, as determined to be appropriate and necessary by the Secretary and consistent with the statutory responsibilities vested in the Secretary of the Environment.
The Department shall designate any type of blood test for sickle cell anemia to be administered under this subtitle.
The blood shall be tested only by a licensed laboratory that periodically undergoes standard proficiency testing for quality assurance.
In this section, “Steering Committee” means the Statewide Steering Committee on Sickle Cell Disease.
There is a Statewide Steering Committee on Sickle Cell Disease.
The Steering Committee shall include representatives from:
Local and national groups that advocate for individuals with sickle cell disease;
Interest and support groups for individuals with sickle cell disease;
Community and consumer groups;
Academic and private clinical settings with knowledge and experience caring for adults with sickle cell disease;
Area hospitals caring for individuals with sickle cell disease; and
Pediatric clinics that care for children with sickle cell disease.
The Steering Committee shall:
Establish institution and community partnerships;
Establish a statewide network of stakeholders who care for individuals with sickle cell disease;
Educate individuals with sickle cell disease, the public, and health care providers about the State options for care of sickle cell disease; and
Identify funding sources for implementing or supporting the actions, studies, policies, regulations, or laws recommended by the Steering Committee, including funding from:
State, federal, and local government sources; and
Private sources.
The Department may, in consultation with the Statewide Steering Committee on Sickle Cell Disease, provide services relating to sickle cell disease, including:
Educational programs on sickle cell disease for individuals affected by the disease, including:
Individuals with sickle cell disease;
Families of individuals with sickle cell disease;
Caregivers of individuals with sickle cell disease;
Employees at primary and secondary schools; and
Health care providers;
Social services support to individuals with sickle cell disease, including support from social workers and community health workers to provide information on services that may be available to the individual;
Testing;
Genetic counseling;
Assistance with any available reimbursement for medical expenses related to sickle cell disease;
Education and counseling services after the receipt of sickle cell trait test results from the State’s Newborn Screening Program; and
Any other programs or services that are necessary to decrease the use of acute care services by individuals who have sickle cell disease.
The Department shall provide the services in subsection (a) of this section through community–based organizations to the extent practicable.
The Department, in consultation with the Statewide Steering Committee on Sickle Cell Disease, shall establish and implement a system of providing information on the sickle cell trait or the thalassemia trait to:
An individual who has the sickle cell trait or the thalassemia trait, including as determined through a newborn screening under § 18–502 of this subtitle; and
If the individual is a minor, the individual’s family.
The Department shall include the following in the information provided under subsection (a) of this section:
How the sickle cell trait or the thalassemia trait impacts the health of an individual with the trait; and
How the sickle cell trait or the thalassemia trait is passed from a parent to a child.
The Department shall maintain in a conspicuous location on its website a list of resources for health care practitioners to use to improve their understanding and clinical treatment of individuals with sickle cell disease or the sickle cell trait, including information on the health impacts of carrying the sickle cell trait.