DIGEST
The digest printed below was prepared by House Legislative Services. It constitutes no part of the
legislative instrument. The keyword, one-liner, abstract, and digest do not constitute part of the law
or proof or indicia of legislative intent. [R.S. 1:13(B) and 24:177(E)]
HB 968 Reengrossed 2022 Regular Session Phelps
Abstract: Requires the La. Dept. of Health to establish and maintain a sickle cell disease registry
to be known as the "Skylar-Cooper Database" which shall function as a repository of
accurate, complete records to aid in the cure and treatment of sickle cell disease.
Proposed law requires the La. Dept. of Health (LDH) to establish and maintain a registry of
individuals diagnosed with sickle cell disease which shall be known as the "Skylar-Cooper
Database". Provides that the purpose of the registry shall be to function as a single repository of
accurate, complete records to aid in the cure and treatment of sickle cell disease in this state.
Proposed law requires that the sickle cell disease registry encompass, without limitation, all of the
following:
(1)A record of individuals in this state who have been diagnosed with sickle cell disease.
(2)All data and other information associated with individuals who have been diagnosed with
sickle cell disease that the secretary of LDH deems necessary and appropriate for inclusion
in the registry.
Proposed law requires that upon making a diagnosis of sickle cell disease, a healthcare provider shall
provide to LDH data regarding the individual who has been diagnosed with the disease.
Proposed law requires LDH to facilitate access to data in the registry through administrative rules.
Stipulates that registry data as well as medical and vital records obtained by LDH or its agent in
accordance with proposed law, as well as the results of any sickle cell disease study, shall be
confidential and shall not be available for subpoena, nor shall such information be disclosed,
discoverable, or compelled to be produced in any civil, criminal, administrative, or other proceeding
nor shall such records be deemed admissible as evidence in any civil, criminal, administrative, or
other tribunal or court for any reason.
Proposed law requires the secretary of LDH to take such actions as are necessary to support the
facilitation of care coordination for sickle cell patients, assist in reducing wait times to access
healthcare services, and assist in promoting continuity of care for young people who age out of La.
Children's Health Insurance Program coverage.
Proposed law requires the secretary of LDH to promulgate all such rules as are necessary to
implement the provisions of proposed law. Provides that these rules shall include but not be limited to the following:
(1)Data elements to be included in the registry.
(2)Guidelines and procedures for obtaining from healthcare providers information regarding
individuals diagnosed with sickle cell disease.
(3)Standards for ensuring that the registry is developed and operated in a manner that comports
with all applicable requirements of the Health Insurance Portability and Accountability Act
(HIPAA), the HIPAA Privacy Rule, and other applicable laws and regulations governing
disclosure of health information.
Proposed law establishes an exception to present law relative to public records, R.S. 44:1 et seq.,
exempting data in the registry from disclosure pursuant to present law.
Proposed law consolidates certain sections of present law relative to sickle cell disease (R.S.
40:1081.5 through 1081.8 and 2018.3) within the new part of law established by proposed law which
pertains exclusively to sickle cell disease.
Proposed law provides that proposed law shall be known as the "Remington Skylar Watts and Betty
Cooper Phelps Act".
(Amends R.S. 36:259(B)(13) and R.S. 44:4.1(B)(26); Adds R.S. 40:1125.1, 1125.11-1125.16,
1125.21, and 1125.31-1125.33)
Summary of Amendments Adopted by House
The Committee Amendments Proposed by House Committee on Health and Welfare to the
original bill:
1. Delete proposed law requiring healthcare facilities to provide to LDH data regarding
individuals who have been diagnosed with sickle cell disease; add in lieu thereof a
requirement that upon making a diagnosis of sickle cell disease, a healthcare provider
shall provide to LDH data regarding the individual who has been diagnosed with the
disease.
2. Delete proposed law authorizing access to data in the sickle cell disease registry by
certain specifically identified entities; add in lieu thereof a requirement that LDH
facilitate access to data in the registry through administrative rules.
3. Authorize LDH or its agent to access medical and vital records in the custody of
physicians, hospitals, clinics, other healthcare providers, and the office of public health
in order that it may conduct sickle cell disease studies.
4. Stipulate that the data contained in the sickle cell disease registry as well as medical and vital records obtained by LDH or its agent in accordance with proposed law, as well as
the results of any sickle cell disease study, shall be confidential and shall not be available
for subpoena, nor shall such information be disclosed, discoverable, or compelled to be
produced in any civil, criminal, administrative, or other proceeding nor shall such records
be deemed admissible as evidence in any civil, criminal, administrative, or other tribunal
or court for any reason.
5. Establish an exception to present law relative to public records, R.S. 44:1 et seq.,
exempting data in the sickle cell disease registry from disclosure pursuant to that law.
6. Make technical changes.
The House Floor Amendments to the engrossed bill:
1. Delete a definition from proposed law for consistency with changes effected through
committee amendments to the original bill.