Current through Register Vol.. 38, No. 17, April 11, 2022
Mission. The Pediatric Comprehensive Sickle Cell Clinic Network promotes the
optimal health and development of children and youth living in the Commonwealth
with sickle cell disease by working in partnership with families, service
providers, community-based sickle cell programs and the Virginia Sickle Cell
services. The Pediatric Comprehensive Sickle Cell Clinic Network provides the
following direct health care services and enabling services:
1. Multidisciplinary evaluation and treatment
from a team of professionals that may include physician, nurse, social worker,
and educational consultant.
Assistance in tracking newborns identified with sickle cell disease to ensure
confirmation of newborn screening results and early access to care.
3. Assistance in accessing comprehensive care
and a medical home.
genetic counseling and diagnostic family studies to insure the accurate
diagnosis of sickle cell disease.
5. Parent and client education across the
6. Collaboration with
primary care providers.
Information and referral to community-based sickle cell support
8. Collaboration with the
Virginia Department of Education and its Education in Hospitals Program to
provide consultation for families, educators and school
9. Transition from
child to adult oriented health care system.
10. Family-to-family support.
11. Training and technical assistance for
of surveillance data to insure clients are receiving services consistent with
their level of risk.
Criteria to receive services from the Pediatric Comprehensive Sickle Cell
Clinic Network. Children and youth are eligible to receive services from the
Pediatric Comprehensive Sickle Cell Clinic Network if they are:
1. Residents of the Commonwealth.
2. Between the ages of birth and their
with sickle cell disease.
No financial eligibility criteria are required for clients to
receive the enabling services. However, clients receiving direct health care
services who meet the above criteria must also meet the financial requirements
based on a sliding scale charge schedule of the major medical center.
Goals. The Title V
national performance measures, as required by the federal Government
Performance and Results Act (GPRA-
), are used to establish the program goals.
The following goals shall change as needed to be consistent with the Title V
national performance measures:
1. Families of
children with sickle cell anemia will partner in decision making at all levels
and will be satisfied with the services they receive.
2. All children with sickle cell anemia will
receive coordinated, ongoing, comprehensive care within a medical
3. All families of children
with sickle cell anemia will have adequate private or public insurance or both
to pay for the services they need.
4. Community-based service systems will be
organized so families can use them easily.
5. All youth with sickle cell anemia will
receive the services necessary to make transitions to all aspects of adult
life, including adult health care, work, and independence.