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Virginia Administrative Code
Title 12. Health
Agency 5. Department of Health
Chapter 191. State Plan for the Children with Special Health Care Needs Program
12/4/2023

12VAC5-191-340. Scope and Content of the Adult Comprehensive Sickle Cell Clinic Network.

A. Mission. The Adult Comprehensive Sickle Cell Clinic Network delivers accessible services to provide access to specialty care and promotes the optimal health of adults living in the Commonwealth with sickle cell disease by working in partnership with individuals, families, service providers, community-based sickle cell programs, and the Virginia Sickle Cell Awareness Program.

B. Scope. The Adult 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, which may include a physician, nurse, social worker, community health worker, or patient navigator.

2. Partnering with pediatric sickle cell providers to help facilitate and coordinate the transition of adolescents and young adults with sickle cell disease from pediatric to adult care and services.

3. Assistance in linking patients with primary care practitioners, a medical home, and subspecialists.

4. Educational genetic counseling to explain the inheritance pattern of the variants of sickle cell disease and diagnostic studies to ensure the accurate diagnosis of sickle cell disease.

5. Patient and family education related to all aspects of the diagnosis consistent with cultural and language needs.

6. Collaborative care between primary and subspecialty care providers.

7. Information, referral, and partnership with community-based sickle cell support programs.

8. Promotion of peer or family support that may include postsecondary education and vocational assistance.

9. Training and technical assistance to educate community and health care providers about best practices and evidence-informed standards of care for individuals with sickle cell disease.

10. Collection of surveillance data to monitor incidence, prevalence, demographics, morbidity, mortality, health care utilization, and costs in order to identify disease burden in the Commonwealth.

C. Criteria to receive services from the Adult Comprehensive Sickle Cell Clinic Network. Individuals are eligible to receive services from the Adult Comprehensive Sickle Cell Clinic Network if they are:

1. Residents of the Commonwealth.

2. 18 years of age and older.

3. Diagnosed 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 criteria in this subsection must also meet the financial requirements based on a sliding scale charge schedule of the providers.

D. Goals. The Title V national performance measures, National Institutes of Health and American Society of Hematology standards are used to establish the following program goals:

1. Individuals and families with sickle cell disease will partner in decision making at all levels and will be satisfied with the services they receive.

2. All individuals with sickle cell disease will receive coordinated, ongoing, comprehensive care within a medical home.

3. All individuals with sickle cell disease will have adequate private or public insurance or both to pay for the services they need.

4. Community-based services will be organized so individuals and families can use them easily.

5. All young adults with sickle cell disease will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work and independence.

6. All adults with sickle cell disease will receive proper health maintenance care, management of complications, and chronic pain management.

Statutory Authority

§§ 32.1-12 and 32.1-77 of the Code of Virginia.

Historical Notes

Derived from Virginia Register Volume 37, Issue 17, eff. May 27, 2021.

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