NEWBORN SCREENING

Under current law, every infant born in Missouri is tested for certain metabolic and genetic diseases and specified health professionals attending to births are required to assure that appropriate specimens are collected and submitted to the Department of Health and Senior Services. All medical test results and personal information relating to genetic testing and obtained from any individual shall be held confidential by the department with certain exceptions. This act provides that in addition to the certain prescribed exceptions, the department may release the results of newborn screening tests to a child’s healthcare professional.

This act also provides that specimens collected by the department shall be retained for five years and then destroyed. However, at the time of collection, the parent or legal guardian of the child from whom the specimen was obtained may direct the department to return, destroy or store the specimen. A specimen released for anonymous study shall not contain information that may be used to determine the identity of the donor.

The department may charge a reasonable fee for the use of such specimens for public health research and preparing and supplying specimens for research proposals approved by the department. (Sections 191.300 and 191.317, 191.331.9)

These provisions are substantially similar to SB 612 (2007).

METABOLIC FORMULA DISTRIBUTION PROGRAM

This act modifies the Metabolic Formula Distribution Program. Under current law, formula for the treatment of inherited diseases of amino acids and organic acids are provided to persons meeting certain criteria and an income-based means test determined by the Department of Health and Senior Services. This act modifies those provisions and specifies four separate categories of applicants eligible for assistance under the Metabolic Distribution Formula Program. These four categories of applicants include:

(1) Applicants ages birth to five years old who have exhausted all benefits from third party payers, including all government assistance programs;

(2) Applicants between the ages of six to eighteen who have exhausted all benefits from third party payers, including all government assistance programs and whose family income is below three hundred percent of the federal poverty level;

(3) Applicants between the ages of six to eighteen who have exhausted all benefits from third party payers, including all government assistance programs and whose family income is at three hundred percent of the federal poverty level or above. For these applicants, the department shall establish a sliding scale of fees and monthly premiums to be paid in order to receive assistance under the formula distribution program; and

(4) Applicants age nineteen and above who have exhausted all benefits from third party payers, including all government assistance programs and who are eligible under an income-based means test established by the department. (Section 191.331.8)

These provisions are identical to SCS/SB 80 (2007).

ADRIANE CROUSE