LAWRENCE J. HOGAN, JR., Governor Ch. 280
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Chapter 280
(Senate Bill 859)
AN ACT concerning
Public Health – Sickle Cell Disease Registry – Establishment
FOR the purpose of requiring the Maryland Department of Health to establish and
maintain a registry of individuals diagnosed with sickle cell disease for a certain
purpose; requiring the Department to periodically publish information identifying
areas with statistically high populations of individuals with sickle cell disease
renaming the Statewide Steering Committee on Services for Adults with Sickle Cell
Disease to be the Statewide Steering Committee on Sickle Cell Disease; requiring the
Maryland Department of Health to establish and implement a system of providing
information on the sickle cell trait or the thalassemia trait to certain individuals;
requiring the Department to maintain on its website a certain list of resources for
health care practitioners and establish a plan for updating its website to meet certain
requirements; and generally relating to a sickle cell disease registry.
BY repealing and reenacting, with amendments,
Article – Health – General
Section 18–506 and 18–507
Annotated Code of Maryland
(2019 Replacement Volume and 2021 Supplement)
BY adding to
Article – Health – General
Section 18–508 and 18–509
Annotated Code of Maryland
(2019 Replacement Volume and 2021 Supplement)
SECTION 1. BE IT ENACTED BY THE GENERAL ASSEMBLY OF MARYLAND,
That the Laws of Maryland read as follows:
Article – Health – General
18–506.
(a) In this section, “Steering Committee” means the Statewide Steering Committee
on [Services for Adults with] Sickle Cell Disease.
(b) There is a Statewide Steering Committee on [Services for Adults with] Sickle
Cell Disease.
(c) The Steering Committee shall include representatives from: Ch. 280 2022 LAWS OF MARYLAND
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(1) Local and national groups that advocate for individuals with sickle cell
disease;
(2) Interest and support groups for individuals with sickle cell disease;
(3) Community and consumer groups;
(4) Academic and private clinical settings with knowledge and experience
caring for adults with sickle cell disease;
(5) Area hospitals caring for individuals with sickle cell disease; and
(6) Pediatric clinics that care for children with sickle cell disease.
(d) The Steering Committee shall:
(1) Establish institution and community partnerships;
(2) Establish a statewide network of stakeholders who care for individuals
with sickle cell disease;
(3) Educate individuals with sickle cell disease, the public, and health care
providers about the State options for care of sickle cell disease; and
(4) Identify funding sources for implementing or supporting the actions,
studies, policies, regulations, or laws recommended by the Steering Committee, including
funding from:
(i) State, federal, and local government sources; and
(ii) Private sources.
18–507.
(a) The Department may, in consultation with the Statewide Steering Committee
on [Services for Adults with] Sickle Cell Disease, provide services relating to sickle cell
disease, including:
(1) Educational programs on sickle cell disease for individuals affected by
the disease, including:
(i) Individuals with sickle cell disease;
(ii) Families of individuals with sickle cell disease;
LAWRENCE J. HOGAN, JR., Governor Ch. 280
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(iii) Caregivers of individuals with sickle cell disease;
(iv) Employees at primary and secondary schools; and
(v) Health care providers;
(2) 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;
(3) Testing;
(4) Genetic counseling;
(5) Assistance with any available reimbursement for medical expenses
related to sickle cell disease;
(6) Education and counseling services after the receipt of sickle cell trait test
results from the State’s Newborn Screening Program; and
(7) Any other programs or services that are necessary to decrease the use of
acute care services by individuals who have sickle cell disease.
(b) The Department shall provide the services in subsection (a) of this section
through community–based organizations to the extent practicable.
18–508.
(A) THE DEPARTMENT SHALL ESTA BLISH AND MAINTAIN A REGISTRY OF
INDIVIDUALS DIAGNOSE D WITH SICKLE CELL D ISEASE FOR USE AS A SINGLE
REPOSITORY OF ACCURA TE, COMPLETE RECORDS TO AID IN PROMOTING THE SITING
OF THE FOLLOWING HEA LTH CARE PROVIDERS I N AREAS WITH STATIST ICALLY HIGH
POPULATIONS OF INDIV IDUALS WITH SICKLE C ELL DISEASE:
(1) HEALTH CARE FACILITIE S THAT PROVIDE INFUS ION THERAPY ;
AND
(2) HEMATOLOGIST OFFICES .
(B) THE SICKLE CELL DISEA SE REGISTRY ESTABLIS HED UNDER
SUBSECTION (A) OF THIS SECTION SHAL L INCLUDE:
(1) A RECORD OF INDIVIDUAL S IN THE STATE WHO HAVE BEEN
DIAGNOSED WITH SICKL E CELL DISEASE; AND
Ch. 280 2022 LAWS OF MARYLAND
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(2) ANY OTHER INFORMATION REGARDING INDIVIDUAL S WHO HAVE
BEEN DIAGNOSED WITH SICKLE CELL DISEASE THAT THE DEPARTMENT CONSIDERS
NECESSARY AND APPROP RIATE FOR INCLUSION ON THE REGISTRY.
(C) (1) THE DEPARTMENT SHALL ESTA BLISH A PROCESS AND
GUIDELINES FOR :
(I) OBTAINING INFORMATION REGARDING AN INDIVID UAL
DIAGNOSED WITH SICKL E CELL DISEASE FROM HEALTH CARE FACILITI ES FOR USE
IN THE REGISTRY; AND
(II) ENSURING THAT THE REG ISTRY AND THE PROCES S OF
OBTAINING INFORMATIO N FOR THE REGISTRY C OMPLY WITH THE REQUI REMENTS
OF § 18–504 OF THIS SUBTITLE , § 13–109 OF THIS ARTICLE , THE HEALTH
INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996, AND ANY OTHER
APPLICABLE PRIVACY LAW ; AND
(III) INTEGRATING THE REGIS TRY WITH THE
STATE–DESIGNATED HEALTH IN FORMATION EXCHANGE .
(2) THE DEPARTMENT MAY USE AN Y AVAILABLE SOURCES OF DATA
FOR THE REGISTRY OR AS PART OF THE PROCE SS AND GUIDELINES ES TABLISHED
UNDER PARAGRAPH (1) OF THIS SUBSECTION , INCLUDING:
(I) DATA FROM THE DESIGNA TED HEALTH INFORMATION
EXCHANGE IN THE STATE;
(II) CENSUS–TRACT LEVEL DATA ; AND
(III) INFORMATION COLLECTED FROM VITAL RECORDS .
(D) A HEALTH CARE PROVIDER WHO PROVIDES HEALTH CARE TO AN
INDIVIDUAL WITH SICK LE CELL DISEASE SHAL L PROVIDE TO THE DEPARTMENT ANY
INFORMATION IN THE F ORM AND MANNER REQUI RED BY THE GUIDELINE S
ESTABLISHED UNDER SU BSECTION (C) OF THIS SECTION.
(E) TO THE EXTENT AUTHORI ZED BY LAW , THE DEPARTMENT SHALL
PERIODICALLY PUBLISH INFORMATION IDENTIFY ING AREAS WITH STATI STICALLY
HIGH POPULATIONS OF INDIVIDUALS WITH SIC KLE CELL DISEASE , WHICH MAY
INCLUDE INFORMATION PUBLISHED IN A MAP .
(A) THE DEPARTMENT , IN CONSULTATION WITH THE STATEWIDE STEERING
COMMITTEE ON SICKLE CELL DISEASE, SHALL ESTABLISH AND IMPLEMENT A LAWRENCE J. HOGAN, JR., Governor Ch. 280
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SYSTEM OF PROVIDING INFORMATION ON THE S ICKLE CELL TRAIT OR THE
THALASSEMIA TRAIT TO :
(1) AN INDIVIDUAL WHO HAS THE SICKLE CELL TRAI T OR THE
THALASSEMIA TRAIT , INCLUDING AS DETERMI NED THR OUGH A NEWBORN
SCREENING UNDER § 18–502 OF THIS SUBTITLE; AND
(2) IF THE INDIVIDUAL IS A MINOR, THE INDIVIDUAL’S FAMILY.
(B) THE DEPARTMENT SHALL INCL UDE THE FOLLOWING IN THE
INFORMATION PROVIDED UNDER SUBSECTION (A) OF THIS SECTION:
(1) HOW THE SI CKLE CELL TRAIT OR T HE THALASSEMIA TRAIT
IMPACTS THE HEALTH O F AN INDIVIDUAL WITH THE TRAIT; AND
(2) HOW THE SICKLE CELL T RAIT OR THE THALASSE MIA TRAIT IS
PASSED FROM A PARENT TO A CHILD.
18–509.
THE DEPARTMENT SHALL MAIN TAIN IN A CONSPICUOU S LOCATION ON ITS
WEBSITE A LIST OF RE SOURCES FOR HEALTH C ARE PRACTITIONERS TO USE TO
IMPROVE THEIR UNDERS TANDING AND CLINICAL TREATMENT OF INDIVID UALS WITH
SICKLE CELL DISEASE OR THE SICKLE CELL T RAIT, INCLUDING INFORMATIO N ON
THE HEALTH IMPACTS O F CARRYING THE SI CKLE CELL TRAIT.
SECTION 2. AND BE IT FURTHER ENACTED, That, on or before April 1, 2023,
the Maryland Department of Health shall establish a plan to update its website to reflect the
information required under § 18–509 of the Health – General Article, as enacted by Section
1 of this Act, including a timeline for when the updates will be available on the website.
SECTION 3. AND BE IT FURTHER ENACTED, That:
(a) The Statewide Steering Committee on Sickle Cell Disease, in conjunction with
the Maryland Department of Health and other relevant stakeholders, shall study and make
recommendations on:
(1) how to enhance access to services for individuals with sickle cell disease
with a focus on areas of the State where there is a statistically high number of individuals
with sickle cell disease and areas where there is a lack of providers with expertise in treating
sickle cell disease;
(2) whether to establish a sickle cell disease registry, and if recommended,
the process and guidelines for establishing a registry, obtaining information, connecting
with the State designated exchange, and protecting data privacy; Ch. 280 2022 LAWS OF MARYLAND
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(3) how to enhance the coordination of health care services for individuals
with sickle cell disease who are transitioning from pediatric to adult health care in the State
including the identification of available resources for individuals who are transitioning; and
(4) how to engage with community –based health fairs and other
community–sponsored events in areas with a statistically high number of individuals with
sickle cell disease to provide outreach and education on living with sickle cell disease and
how to access health care services.
(b) On or before December 1, 2022, the Statewide Steering Committee on Sickle
Cell Disease shall report its findings and recommendations, in accordance with § 2–1257 of
the State Government Article, to the General Assembly.
SECTION 2. 4. AND BE IT FURTHER ENACTE D, That this Act shall take effect
October July 1, 2022.
Approved by the Governor, May 12, 2022.