HCS HB 560 -- PHENYLKETONURIA (PKU) TESTING (Lakin)

This substitute adds certified nurse midwives and ambulatory
surgical centers to the list of health care providers required
to collect specimens for PKU testing.  The substitute eliminates
criminal penalties for parents who refuse to have their child
tested, but requires parents to document their refusal.  The
substitute also requires health care providers to provide
parents with information about testing and PKU, authorizes the
Department of Health to collect fees for the testing, prohibits
third party payers from considering the department's fee as part
of a provider's internal laboratory costs, and requires the
department to provide formula for the treatment of PKU if an
applicant has exhausted all benefits from third party payers and
if the department receives appropriations to provide PKU formula.

This substitute also places any rule promulgated under its
authority under certain standards for withstanding a challenge,
requires the court to award reasonable fees and expenses to any
prevailing party in such a challenge, and requires that rules
promulgated pursuant to the bill expire on August 28th of the
year after thy become effective unless extended by statute.
These rules provisions have a conditional termination date.

FISCAL NOTE:  Estimated Net Income to Missouri Public Health
Services Fund of $685,748 for FY 1998, $847,583 for FY 1999, and
$873,011 for FY 2000.

HCS HB 560 -- PHENYLKETONURIA (PKU) TESTING

CO-SPONSORS:  Harlan (Lakin)

COMMITTEE ACTION:  Voted "do pass" by the Committee on Critical
Issues by a vote of 21 to 0.

This substitute adds certified nurse midwives and ambulatory
surgical centers to the list of health care providers required
to collect specimens for PKU testing.  The substitute eliminates
criminal penalties for parents who refuse to have their child
tested, but requires parents to document their refusal.  The
substitute also requires health care providers to provide
parents with information about testing and PKU, authorizes the
Department of Health to collect fees for the testing, prohibits
third party payers from considering the department's fee as part
of a provider's internal laboratory costs, and requires the
department to provide formula for the treatment of PKU if an
applicant has exhausted all benefits from third party payers and
if the department receives appropriations to provide PKU formula.

FISCAL NOTE:  Estimated Net Increase to Missouri Public Health
Services Fund of $685,748 for FY 1998, $847,583 for FY 1999, and
$873,011 for FY 2000.

PROPONENTS:  Supporters say that the bill is necessary to give
the Department of Health authority to collect the fees for PKU
testing, to clarify who is responsible for collecting specimens,
and to remove the criminal penalties for parents who refuse
testing.

Testifying for the bill were Representative Lakin; and the
Department of Health.

OPPONENTS:  Those who oppose the bill say that the bill should
allow parents to refuse testing only for religious reasons.  The
bill should also require the state to pay for the formula used
in treating the disease.

Testifying against the bill was Missouri Metabolic Support.

Katharine Hickel, Research Analyst

HB 560 -- Phenylketonuria (PKU) Testing

Co-Sponsors:  Lakin, Naeger

This bill authorizes health care providers to collect
appropriate specimens for phenylketonuria (PKU) testing on
infants, and to submit this data to the Department of Health
laboratories with the informed consent of the parents or
guardians. Criminal penalties are deleted from the statutes.
When parents or guardians fail to have this testing for the
infant, they must submit a written document of refusal of PKU
testing. This refusal becomes part of the medical record. The
Department of Health establishes the fee payment procedure.

Quality management and improvement data will be reported to the
Department of Insurance. Failure to comply with these rules may
result in a restriction from participation in health programs
administered by the state. Data collected by the Department of
Health will utilize the Missouri Health Indicator Set or an
equivalent data set in consultation with other state agencies
and interested parties in the health care arena protecting
patient confidentiality.  Raw data will not be public
information. Statistically valid reports and studies prepared by
the Department of Health using this information will be
available to the public.