HB664 HD1

Report Title:

Infants; Birth Defects

Description:

Establishes a birth defects program in the DOH and establishes a funding mechanism for this program. (HB664 HD1)

HOUSE OF REPRESENTATIVES	H.B. NO.	664
TWENTY-FIRST LEGISLATURE, 2001		H.D. 1
STATE OF HAWAII

A BILL FOR AN ACT

RELATING TO BIRTH DEFECTS.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF HAWAII:

SECTION 1. Chapter 321, Hawaii Revised Statutes, is amended by adding a new part to be appropriately designated and to read as follows:

"PART . BIRTH DEFECTS PROGRAM

§321- Definitions. As used in this part, unless the context requires otherwise:

"Adverse reproductive outcome" includes but is not limited to birth defect, neonatal and postnatal death up to one year of age, medical termination of pregnancy, and fetal death including miscarriage, spontaneous abortion, and stillbirth.

"Birth defect" means any structural or biochemical abnormality, regardless of cause, diagnosed at any time before or after birth, that requires medical or surgical intervention or that interferes with normal growth or development.

§321- Birth defects program. (a) The department of health may establish a statewide Hawaii birth defects program to:

(1) Collect and disseminate data to help prevent and ameliorate birth defects and other adverse reproductive outcomes; and

(2) Provide families who have children with birth defects with information about services available to them.

(b) For the purpose of the birth defects program collection of birth defect data, providers of health care shall report or make available to the birth defects program health care records and information relating to the occurrence of birth defects in the form and manner provided by the department. The department shall have access to any medical information that pertains to a diagnosed or suspected birth defect or other adverse reproductive outcome, including the records of the mother and child.

(c) The identity or any group of facts or any system of records that may lead to the identity of any person whose condition or treatment has been studied shall be confidential and shall not be revealed in any report, release, or publication. The department of health may use the names of persons when requesting additional information; provided that:

(1) Approval shall first be obtained from the individual, the individual's parents or guardian in the case of a minor, or the next of kin in the case of a deceased person; and

(2) The identity or facts identifying the person shall not be released outside the department of health.

(d) Persons who report, either voluntarily or as required by this part, information required for the birth defects program may not be held liable for reporting the information to the department of health, or any consequences stemming from that reporting.

(e) The birth defects program may develop and implement:

(1) Procedures for the collection, analysis, and distribution of information to the public and government agencies;

(2) Procedures for providing information to families of children with birth defects and to their primary care providers relating to services available to the family to help improve health, emotional, and educational outcomes; and

(3) Policies and procedures to maintain confidentiality of the affected families.

§321- Commemorative souvenir birth and marriage certificates. The department may issue commemorative souvenir birth and marriage certificates. These certificates shall be issued by the birth defects program and shall not be used for official purposes.

§321- Birth defects special fund. (a) There is established in the State treasury, the birth defects special fund, into which shall be deposited all moneys collected by the department from the sale of commemorative souvenir birth and marriage certificates.

(b) Moneys in the birth defects special fund shall be used for the payment of operating expenses of the birth defects program.

(c) All unexpended and unencumbered moneys remaining in the birth defects special fund at the close of each fiscal year that are deemed by the director of health to be in excess of the moneys necessary to carry out the purposes of this part over the next following fiscal year, shall lapse to the credit of the state fund.

(d) The director shall submit an annual report to the legislature twenty days prior to the convening of each regular session, identifying fund balances, transfers, and expenditures made from the birth defects special fund, and the purposes of each expenditure.

§321- Rules. The department of health may adopt rules pursuant to chapter 91 as necessary for the purposes of this part."

SECTION 2. There is appropriated out of the birth defects special fund the sum of $1 or so much thereof as may be necessary for fiscal year 2001-2002 and the sum of $1 or so much thereof as may be necessary for fiscal year 2002-2003.

The sums appropriated shall be expended by the department of health for the purposes of this Act.

SECTION 3. This Act shall take effect on July 1, 2001.