H. B. 2871
(By Delegates Amores, Compton and Leach)
[Introduced March 15, 2001; referred to the
Committee on Health and Human Resources then Finance.]
A BILL to amend chapter sixteen of the code of West Virginia, one
thousand nine hundred thirty-one, as amended, by adding
thereto a new article, designated article three-d, relating to
providing a central state registry to collect medical
information concerning cranial and central nervous tumors and
the treatment thereof; purposes and legislative findings;
providing, subject to available appropriations, that the
commissioner may hire personnel; requiring commissioner to
establish statewide reporting system; authorizing commissioner
to accept donations of money, equipment or other items;
providing that the commissioner charge a fee for providing
information; authorizing the commissioner to enter into collaborative agreements; requiring confidentiality of names
of persons whose tumors are reported in the registry;
providing when names of persons whose tumors are listed in the
registry may be released; prohibiting a claim against persons
who, in good faith, report or receive information for the
registry; prohibiting denial of licensing to health care
facilities who make good faith disclosures of information to
the central registry; providing criminal penalties for
violations of confidentiality provision; and requiring
commissioner to propose legislative rules to effectuate the
purposes and provisions of this article.
Be it enacted by the Legislature of West Virginia:
That chapter sixteen of the code of West Virginia, one
thousand nine hundred thirty-one, as amended, be amended by adding
thereto a new article, designated article three-d, to read as
follows:
ARTICLE 3D. REPOSITORY OF INFORMATION ON CRANIAL AND CENTRAL
NERVOUS SYSTEM TUMORS AND MEDICAL TREATMENT
THEREFOR; REQUEST FOR INFORMATION; PENALTIES;
ENFORCEMENT.
§16-3D-1. Purposes and legislative findings.
(a) The purpose of this article is to provide a centralized repository of information to receive accurate and up-to-date
information relating to the incidence, diagnosis and treatment of
benign and malignant cranial and central nervous system tumors in
order to gain knowledge about these types of tumors with the
ultimate purpose of reducing morbidity and mortality rates
associated with these tumors.
(b) The Legislature finds that there is a lack of adequate
information concerning the etiology, causation and treatment of
cranial and central nervous system tumors that afflict residential
citizens in West Virginia. This lack of information increases the
medical health risks of persons who suffer due to the existence of
these tumors. The prompt availability of this information would
afford greater medical effectiveness in treatment for those
individuals that are forced to endure the pain, loss of body
function and other deleterious health effects associated with the
existence of these tumors.
§16-3D-2. Cranial and central nervous system tumors; duties of the
commissioner
of the bureau for public health;
requests for information;
the commissioner may hire
personnel; requirement that commissioner establish
statewide reporting system; authorizing commissioner
to accept donations of money, equipment or other items; providing that the commissioner charge a fee
for providing information; authorizing the
commissioner to enter into collaborative agreements;
requiring confidentiality of names of persons whose
tumors are reported in the registry; providing when
names of persons whose tumors are listed in the
registry may be released; prohibiting claims against
persons who report or receive information for the
registry; prohibiting denial of licensing to health
care facilities who make disclosures of information
to the central registry; providing criminal penalties
for violations of confidentiality; and requiring
commissioner to propose legislative rules
.
(a) The
commissioner
of the West Virginia bureau for public
health shall within one hundred eighty days of the passage of this
article establish a central registry that shall receive, compile,
analyze, and make available epidemiological and aggregate clinical
case information collected from all health care providers and all
health care facilities in this state that diagnose or treat cranial
or central nervous system tumors, including their treatment and
effect to human health. In developing and maintaining this list
the
commissioner
shall give consideration to the individual medical histories of persons' afflicted with cranial and central nervous
system tumors, hereditary factors of such persons if such
information is available, and whether the person has been exposed
to hazardous substances contained on the
commissioner
's list as
required by section two, article sixteen-a of this chapter.
(b) To accomplish the purposes of this article, the
commissioner shall: (1) Establish a uniform statewide reporting
system; (2) determine the specific data to be reported; and (3)
determine the deadline for reporting data.
(c) Subject to available appropriations, the commissioner may
employ other staff sufficient to carry out the purpose of this
article.
(d) The commissioner may accept for any of the purposes of
this article all donations and grants of money, equipment,
supplies, materials and services, conditional or otherwise, from
any state, the United States or any other governmental agency, or
from any person, firm, association or corporation, and may receive,
utilize and dispose of these in accordance with other state laws.
(e) The commissioner shall charge a fee when data is requested
from the registry. Fees shall be based on the actual cost of
producing the data.
(f) The commissioner may enter into collaborative agreements
with other state registries or federal registries to: (1) Obtain
complete information on West Virginia residents who are diagnosed
with cranial or central nervous system tumors or treated therefor
in other states; and (2) participate in a program with another
state or a federal agency for treatment and prevention of cranial
or central nervous system tumors.
(g) Information in the registry that could identify a person,
whether deceased or living, shall be kept strictly confidential.
An analysis, research study, report or compilation of data based on
information in the registry may not disclose the identity of any
individual with a tumor. Confidential information may be released
by the director only: (1) Upon the written request of the
individual patient who is the subject of the information or the
patient's authorized representative; or (2) to persons authorized
by the director to conduct research studies.
(h) No person may maintain any claim or cause of action
against another person, a health care facility, or a health care
provider who participates in good faith in the reporting or
reception of information for the central registry.
(i) The license of a health care facility or a health care provider may not be denied, suspended, or revoked for the good
faith disclosure of confidential or privileged information in the
reporting of tumors to the registry.
(j) A person who discloses confidential information in
violation of this article is guilty of a misdemeanor and, upon
conviction thereof, shall be fined up to one thousand dollars or
imprisoned in a county or regional jail facility for not more than
six months, or both fined and imprisoned.
(k) The commissioner shall propose rules for legislative
approval in accordance with the provisions of article three,
chapter twenty-nine-a of this code designed to promote and
effectuate the purposes and provisions of this article.
NOTE: The purpose of this bill is to provide for a central
registry of cases of cranial and central nervous system tumors in
the state in order to compile a wealth of knowledge concerning
etiology, causation, treatment, morbidity and mortality rates with
the ultimate goal being to develop more effective medical
treatment. The bill includes confidentiality provisions, and a
criminal penalty for a violation of the provisions.
This article[TYPE INFORMATION] is new; therefore, strike-throughs and
underscoring have been omitted.