EXPLANATION: CAPITALS INDICATE MAT TER ADDED TO EXISTIN G LAW.
[Brackets] indicate matter deleted from existing law.
Underlining indicates amendments to bill.
Strike out indicates matter stricken from the bill by amendment or deleted from the law by
amendment.
Italics indicate opposite chamber/conference committee amendments.
*sb0859*
SENATE BILL 859
J1 (2lr2941)
ENROLLED BILL
— Finance/Health and Government Operations —
Introduced by Senator Watson
Read and Examined by Proofreaders:
_______________________________________________
Proofreader.
_______________________________________________
Proofreader.
Sealed with the Great Seal and presented to the Governor, for his approval this
_______ day of _______________ at _________________ _______ o’clock, ________M.
______________________________________________
President.
CHAPTER ______
AN ACT concerning 1
Public Health – Sickle Cell Disease Registry – Establishment 2
FOR the purpose of requiring the Maryland Department of Health to establish and 3
maintain a registry of individuals diagnosed with sickle cell disease for a certain 4
purpose; requiring the Department to periodically publish information identifying 5
areas with statistically high populations of individuals with sickle cell disease 6
renaming the Statewide Steering Committee on Services for Adults with Sickle Cell 7
Disease to be the Statewide Steering Committee on Sickle Cell Disease; requiring the 8
Maryland Department of Health to establish and implement a system of providing 9
information on the sickle cell trait or the thalassemia trait to certain individuals; 10
requiring the Department to maintain on its website a certain list of resources for 11
health care practitioners and establish a plan for updating its website to meet certain 12
requirements; and generally relating to a sickle cell disease registry. 13
BY repealing and reenacting, with amendments, 14 2 SENATE BILL 859
Article – Health – General 1
Section 18–506 and 18–507 2
Annotated Code of Maryland 3
(2019 Replacement Volume and 2021 Supplement) 4
BY adding to 5
Article – Health – General 6
Section 18–508 and 18–509 7
Annotated Code of Maryland 8
(2019 Replacement Volume and 2021 Supplement) 9
SECTION 1. BE IT ENACTED BY THE GENERAL ASSEMBLY OF MARYLAND, 10
That the Laws of Maryland read as follows: 11
Article – Health – General 12
18–506. 13
(a) In this section, “Steering Committee” means the Statewide Steering Committee 14
on [Services for Adults with] Sickle Cell Disease. 15
(b) There is a Statewide Steering Committee on [Services for Adults with] Sickle 16
Cell Disease. 17
(c) The Steering Committee shall include representatives from: 18
(1) Local and national groups that advocate for individuals with sickle cell 19
disease; 20
(2) Interest and support groups for individuals with sickle cell disease; 21
(3) Community and consumer groups; 22
(4) Academic and private clinical settings with knowledge and experience 23
caring for adults with sickle cell disease; 24
(5) Area hospitals caring for individuals with sickle cell disease; and 25
(6) Pediatric clinics that care for children with sickle cell disease. 26
(d) The Steering Committee shall: 27
(1) Establish institution and community partnerships; 28
(2) Establish a statewide network of stakeholders who care for individuals 29
with sickle cell disease; 30
SENATE BILL 859 3
(3) Educate individuals with sickle cell disease, the public, and health care 1
providers about the State options for care of sickle cell disease; and 2
(4) Identify funding sources for implementing or supporting the actions, 3
studies, policies, regulations, or laws recommended by the Steering Committee, including 4
funding from: 5
(i) State, federal, and local government sources; and 6
(ii) Private sources. 7
18–507. 8
(a) The Department may, in consultation with the Statewide Steering Committee 9
on [Services for Adults with] Sickle Cell Disease, provide services relating to sickle cell 10
disease, including: 11
(1) Educational programs on sickle cell disease for individuals affected by 12
the disease, including: 13
(i) Individuals with sickle cell disease; 14
(ii) Families of individuals with sickle cell disease; 15
(iii) Caregivers of individuals with sickle cell disease; 16
(iv) Employees at primary and secondary schools; and 17
(v) Health care providers; 18
(2) Social services support to individuals with sickle cell disease, including 19
support from social workers and community health workers to provide information on 20
services that may be available to the individual; 21
(3) Testing; 22
(4) Genetic counseling; 23
(5) Assistance with any available reimbursement for medical expenses 24
related to sickle cell disease; 25
(6) Education and counseling services after the receipt of sickle cell trait test 26
results from the State’s Newborn Screening Program; and 27
(7) Any other programs or services that are necessary to decrease the use of 28
acute care services by individuals who have sickle cell disease. 29
4 SENATE BILL 859
(b) The Department shall provide the services in subsection (a) of this section 1
through community–based organizations to the extent practicable. 2
18–508. 3
(A) THE DEPARTMENT SHALL ESTA BLISH AND MAINTAIN A REGISTRY OF 4
INDIVIDUALS DIAGNOSE D WITH SICKLE CELL D ISEASE FOR USE AS A SINGLE 5
REPOSITORY OF ACCURA TE, COMPLETE RECORDS TO AID IN PROMOTING THE SITING 6
OF THE FOLLOWING HEA LTH CARE PROVIDERS I N AREAS WITH STATISTICALLY HIGH 7
POPULATIONS OF INDIV IDUALS WITH SICKLE C ELL DISEASE: 8
(1) HEALTH CARE FACILITIE S THAT PROVIDE INFUS ION THERAPY ; 9
AND 10
(2) HEMATOLOGIST OFFICES . 11
(B) THE SICKLE CELL DISEA SE REGISTRY ESTABLIS HED UNDER 12
SUBSECTION (A) OF THIS SECTION SH ALL INCLUDE: 13
(1) A RECORD OF INDIVIDUAL S IN THE STATE WHO HAVE BEEN 14
DIAGNOSED WITH SICKL E CELL DISEASE; AND 15
(2) ANY OTHER INFORMATION REGARDING INDIVIDUAL S WHO HAVE 16
BEEN DIAGNOSED WITH SICKLE CELL DISEASE THAT THE DEPARTMENT CONSIDERS 17
NECESSARY AND APPROPRIATE FOR INCL USION ON THE REGISTR Y. 18
(C) (1) THE DEPARTMENT SHALL ESTA BLISH A PROCESS AND 19
GUIDELINES FOR : 20
(I) OBTAINING INFORMATION REGARDING AN INDIVID UAL 21
DIAGNOSED WITH SICKL E CELL DISEASE FROM HEALTH CARE FACILITI ES FOR USE 22
IN THE REGISTRY; AND 23
(II) ENSURING THAT THE REG ISTRY AND THE PROCES S OF 24
OBTAINING INFORMATIO N FOR THE REGISTRY C OMPLY WITH THE REQUI REMENTS 25
OF § 18–504 OF THIS SUBTITLE , § 13–109 OF THIS ARTICLE , THE HEALTH 26
INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996, AND ANY OTHER 27
APPLICABLE PRIVACY L AW; AND 28
(III) INTEGRATING THE REGIS TRY WITH THE 29
STATE–DESIGNATED HEALTH IN FORMATION EXCHANGE . 30
SENATE BILL 859 5
(2) THE DEPARTMENT MAY USE AN Y AVAILABLE SOURCES OF DATA 1
FOR THE REGISTRY OR AS PART OF THE PROCE SS AND GUIDELINES ES TABLISHED 2
UNDER PARAGRAPH (1) OF THIS SUBSECTION , INCLUDING: 3
(I) DATA FROM THE DESIGNA TED HEALTH INFORMATION 4
EXCHANGE IN THE STATE; 5
(II) CENSUS–TRACT LEVEL DATA ; AND 6
(III) INFORMATION COLLECTED FROM VITAL RECORDS . 7
(D) A HEALTH CARE PROVIDER WHO PROVIDES HEALTH CARE TO AN 8
INDIVIDUAL WITH SICK LE CELL DISEASE SHAL L PROVIDE TO THE DEPARTMENT ANY 9
INFORMATION IN THE F ORM AND MANNER REQUI RED BY THE GUIDELINE S 10
ESTABLISHED UNDER SU BSECTION (C) OF THIS SECTION. 11
(E) TO THE EXTENT AUTHORI ZED BY LAW , THE DEPARTMENT SHALL 12
PERIODICALLY PUBLISH INFORMATION IDENTIFY ING AREAS WITH STATI STICALLY 13
HIGH POPULATIONS OF INDIVIDUALS WITH SIC KLE CELL DISEASE , WHICH MAY 14
INCLUDE INFORMATION PUBLISHED IN A MAP . 15
(A) THE DEPARTMENT , IN CONSULTATION WITH THE STATEWIDE STEERING 16
COMMITTEE ON SICKLE CELL DISEASE, SHALL ESTABLISH AND IMPLEMENT A 17
SYSTEM OF PROVIDING INFORMATION ON THE S ICKLE CELL TRAIT OR THE 18
THALASSEMIA TRAIT TO : 19
(1) AN INDIVIDUAL WHO HAS THE SICKLE CELL TRAI T OR THE 20
THALASSEMIA TRAIT , INCLUDING AS DETER MINED THROUGH A NEWB ORN 21
SCREENING UNDER § 18–502 OF THIS SUBTITLE; AND 22
(2) IF THE INDIVIDUAL IS A MINOR, THE INDIVIDUAL’S FAMILY. 23
(B) THE DEPARTMENT SHALL INCL UDE THE FOLLOWING IN THE 24
INFORMATION PROVIDED UNDER SUBSECTION (A) OF THIS SECTION: 25
(1) HOW THE SICKLE CELL T RAIT OR THE THALASSE MIA TRAIT 26
IMPACTS THE HEALTH O F AN INDIVIDUAL WITH THE TRAIT; AND 27
(2) HOW THE SICKLE CELL T RAIT OR THE THALASSE MIA TRAIT IS 28
PASSED FROM A PARENT TO A CHILD. 29
18–509. 30
6 SENATE BILL 859
THE DEPARTMENT SHALL MAIN TAIN IN A CONSPICUO US LOCATION ON ITS 1
WEBSITE A LIST OF RE SOURCES FOR HEALTH C ARE PRACTITIONERS TO USE TO 2
IMPROVE THEIR UNDERS TANDING AND CLINICAL TREATMENT OF INDIVID UALS WITH 3
SICKLE CELL DISEASE OR THE SICKLE CELL T RAIT, INCLUDING INFORMATIO N ON 4
THE HEALTH IMPACTS O F CARRYING THE SICKLE CELL TRAIT. 5
SECTION 2. AND BE IT FURTHER ENACTED, That, on or before April 1, 2023, 6
the Maryland Department of Health shall establish a plan to update its website to reflect the 7
information required under § 18–509 of the Health – General Article, as enacted by Section 8
1 of this Act, including a timeline for when the updates will be available on the website. 9
SECTION 3. AND BE IT FURTHER ENACTED, That: 10
(a) The Statewide Steering Committee on Sickle Cell Disease, in conjunction with 11
the Maryland Department of Health and other relevant stakeholders, shall study and make 12
recommendations on: 13
(1) how to enhance access to services for individuals with sickle cell disease 14
with a focus on areas of the State where there is a statistically high number of individuals 15
with sickle cell disease and areas where there is a lack of providers with expertise in treating 16
sickle cell disease; 17
(2) whether to establish a sickle cell disease registry, and if recommended, 18
the process and guidelines for establishing a registry, obtaining information, connecting 19
with the State designated exchange, and protecting data privacy; 20
(3) how to enhance the coordination of health care services for individuals 21
with sickle cell disease who are transitioning from pediatric to adult health care in the State 22
including the identification of available resources for individuals who are transitioning; and 23
(4) how to engage with community –based health fairs and other 24
community–sponsored events in areas with a statistically high number of individuals with 25
sickle cell disease to provide outreach and education on living with sickle cell disease and 26
how to access health care services. 27
(b) On or before December 1, 2022, the Statewide Steering Committee on Sickle 28
Cell Disease shall report its findings and recommendations, in accordance with § 2–1257 of 29
the State Government Article, to the General Assembly. 30
SECTION 2. 4. AND BE IT FURTHER ENACTED, That this Act shall take effect 31
October July 1, 2022. 32