RÉSUMÉ DIGEST
ACT 373 (HB 483) 2017 Regular Session Jackson
Existing law creates and provides for the Louisiana Tumor Registry (hereafter, "tumor
registry"), a statewide registry program within the Louisiana State University System for
reporting of cancer cases. New law retains existing law.
New law requires the tumor registry to provide diagnostic, treatment, and follow-up
information concerning a patient at the request of a physician or medical facility diagnosing
or treating the case as authorized by federal regulations relative to privacy of health
information (45 CFR 164.506).
New law requires the tumor registry to collaborate with the National Cancer Institute, the
Centers for Disease Control and Prevention, the North American Association of Central
Cancer Registries, the International Agency for Research on Cancer, and any other national
or international cancer surveillance program it may designate in providing cancer data and
participating in cancer studies.
New law requires the tumor registry to cooperate with the office of public health of the La.
Department of Health (OPH) in all of the following:
(1)Evaluating programs.
(2)Investigating cancer concerns and other cancer-related issues.
(3)Implementing the program of cancer investigation and intervention provided for in
new law.
New law provides that the use of registry data by OPH officials and registry-designated
national cancer surveillance programs shall be considered an in-house activity and be
processed expeditiously.
New law provides that requests by OPH for case-specific data shall require annual approval
by the institutional review board of the La. State University Health Sciences Center-New
Orleans (LSUHSC-New Orleans). Requires compliance by OPH with confidentiality
standards of the tumor registry.
New law requires that, subject to the limitations of federal law and new law relative to
privacy of health information, the tumor registry shall release case-specific data to persons
or organizations for the purposes of cancer prevention, control, and research; but prohibits
inclusion in such data of information collected for special studies or other research projects.
Requires requests for such data to be submitted in writing and reviewed and approved by the
tumor registry research committee.
New law provides that if a request for data submitted in accordance with new law is denied
by the LSUHSC-New Orleans institutional review board, the board shall provide to the
requestor notice in writing of the reason for the denial electronically or by postal mail.
New law requires the director of the tumor registry or his designee to coordinate the registry's
research committee. Provides that the research committee shall include, without limitation,
the following members:
(1)The director of the tumor registry.
(2)A qualified representative selected from each of the following entities:
(a)The LSUHSC-New Orleans.
(b)OPH.
(c)The La. Cancer and Lung Trust Fund Board. New law provides for duties of the research committee with respect to requests for tumor
registry data.
New law requires that in determining the order of processing requests for data, the tumor
registry shall give priority to requests for data from OPH for use in responding to concerns
about threats to the public health. Provides that the tumor registry shall process other
requests for data in order of receipt, and that the registry may seek reimbursement from a
requestor for actual costs of compiling and providing the data.
New law provides for maintenance and reporting by the tumor registry of the data it collects.
Authorizes the tumor registry to assess a charge to a requestor of data for actual costs of
compiling and providing the data, and to require payment before proceeding to fulfill the data
request.
New law prohibits the tumor registry from releasing data in cases in which such data would
disclose the identity of any person to whom the data relate and thus violate the requirements
of the Health Insurance Portability and Accountability Act relating to uses and disclosure of
protected health information (45 CFR 164.514). Provides that in such situations, the tumor
registry may combine more years of cancer data together at the census tract level or suppress
the data according to the suppression rule of the United States Cancer Statistics program.
New law provides that in considering for approval a request for aggregate data, the research
committee of the tumor registry shall determine whether the request complies with applicable
state and federal laws relating to privacy of health information. Provides that if the research
committee finds that disclosure of data in response to the request would violate any such law,
then the committee shall collaborate with the requestor to revise the request in order to
preclude such violation.
New law prohibits the research committee of the tumor registry from denying any request for
aggregate data for any reason that is unrelated to compliance with state or federal privacy
laws.
New law requires the tumor registry to prepare an annual statistical report concerning cancer
rates and counts which includes data at the census tract level, and to submit the report to the
office of the president of the LSU System for inclusion with the annual cancer report
provided for in existing law (R.S. 40:1105.10). Provides that the tumor registry shall also
submit the statistical report to the following entities:
(1)The LSUHSC-New Orleans.
(2)The LSUHSC-Shreveport.
(3)The La. Cancer and Lung Trust Fund Board.
(4)Each participating hospital.
Existing law (R.S. 40:1105.10) requires that an annual cancer report be developed by the
LSU System and issued to the governor, the speaker of the House of Representatives, the
president of the Senate, and the legislative committees on health and welfare. New law
requires that this report also be transmitted to the governing body of each parish in the state.
New law requires the tumor registry to develop and publish on its website a mechanism by
which individuals may elect to receive notifications and reports in electronic format.
New law grants OPH authority to operate a program of cancer investigation and intervention
if sufficient funding is available for this purpose. Provides that the source of monies for the
program may be any appropriation by the legislature, including appropriations of federal
funds; appropriations from the Health Excellence Fund and the La. Fund created by existing
constitution; any public or private donations, gifts, or grants from individuals, corporations,
nonprofit organizations, or other business entities; and any other monies which may be
provided by law.
New law requires OPH to engage and collaborate with the tumor registry, the La. Cancer
Research Center, and the La. Advisory Committee on Populations and Geographic Regions With Excessive Cancer Rates in administering the cancer investigation and intervention
program provided for in new law. Stipulates that the program shall be conducted in addition
to the activities of, and shall not replace or supplant, the La. Cancer Prevention and Control
Programs of the School of Public Health of the LSUHSC-New Orleans.
Effective August 1, 2017.
(Amends R.S. 40:1105.10(B); Adds R.S. 40:5.12, 1105.8.1, and 1105.8.2)