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)]
CONFERENCE COMMITTEE REP ORT DIGEST
HB 483 2017 Regular Session Jackson
Keyword and oneliner of the instrument as it left the House
HEALTH/CANCER: Provides relative to disclosure of data maintained by the Louisiana Tumor
Registry and for a cancer investigation initiative
Report adopts Senate amendments to:
1. Delete references in proposed law to collection of cancer data by the La. Tumor Registry.
2. Delete references in proposed law to an institutional review board of the office of public
health which does not exist.
3. Delete proposed law requiring the La. Tumor Registry to review reports written for public
release using registry data in advance of the public release of any such report.
Report rejects Senate amendments which would have:
1. Made an unnecessary technical change.
Report amends the bill to:
1. Delete a reference to the Breast Cancer Control Program provided for present law and insert
in lieu thereof a reference to the La. Cancer Prevention and Control Programs of the School
of Public Health of the Louisiana State University Health Sciences Center-New Orleans.
2. Make technical changes.
Digest of the bill as proposed by the Conference Committee
Proposed law requires the La. Tumor Registry (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). Proposed 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.
Proposed 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 proposed
law.
Proposed 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.
Proposed 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.
Proposed law requires that, subject to the limitations of federal law and proposed 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.
Proposed law provides that if a request for data submitted in accordance with proposed law is denied
by the LSUHSC-New Orleans institutional review board, the institutional review board shall provide
to the requestor notice in writing of the reason for the denial electronically or by postal mail.
Proposed 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.
Proposed law provides for duties of the research committee with respect to requests for tumor
registry data.
Proposed 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.
Proposed 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.
Proposed 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.
Proposed 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.
Proposed 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.
Proposed 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
present 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.
Present 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. Proposed law requires that this report also be
transmitted to the governing body of each parish in the state.
Proposed law requires the tumor registry to develop and publish on its website a mechanism by
which individuals may elect to receive in electronic format notifications and reports.
Proposed 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 present 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.
Proposed 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 proposed 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.
(Amends R.S. 40:1105.10(B); Adds R.S. 40:5.12, 1105.8.1, and 1105.8.2)