Establishing an advance universal newborn screening program, providing for the reimbursement of certain treatment services and extending the transfer of moneys to the Kansas newborn screening fund.

Session of 2025
HOUSE BILL No. 2399
By Committee on Federal and State Affairs
Requested by Representative Bryce on behalf of Representative W. Carpenter
2-28
AN ACT concerning health and healthcare; related to newborn screening;
establishing an advance universal newborn screening program;
providing for the reimbursement of certain treatment services;
authorizing the secretary of health and environment to specify
conditions included in screenings; extending the transfer of moneys to
the Kansas newborn screening fund; amending K.S.A. 65-181 and 65-
183 and K.S.A. 2024 Supp. 65-180 and repealing the existing sections.
Be it enacted by the Legislature of the State of Kansas:
Section 1. K.S.A. 2024 Supp. 65-180 is hereby amended to read as
follows: 65-180. There is hereby established an advance universal
newborn screening program to be administered by the secretary of health
and environment. The secretary of health and environment shall:
(a) Institute and carry on an intensive educational program among
physicians, hospitals, public health nurses and the public concerning
congenital hypothyroidism, galactosemia, phenylketonuria and other
genetic diseases detectable with the same specimen conditions identified
by the secretary in accordance with subsection (i) . This educational
program shall include information about the nature of such conditions and
examinations for the detection thereof in early infancy in order that
measures may be taken to prevent intellectual disability, physical disability
or morbidity resulting from such conditions.
(b) Provide recognized screening tests for phenylketonuria,
galactosemia, hypothyroidism and such other diseases as may be
appropriately detected with the same specimen conditions identified by the
secretary in accordance with subsection (i) . The initial laboratory
screening tests for these diseases shall be performed by the department of
health and environment or its designee for all infants born in the state.
Such services shall be performed without charge.
(c) Provide a follow-up program by providing test results and other
information to identified physicians; locate infants with abnormal newborn
screening test results; with parental consent, monitor infants to assure
appropriate testing to either confirm or not confirm the disease suggested
by the screening test results; with parental consent, monitor therapy and
treatment for infants with confirmed diagnosis of congenital
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hypothyroidism, galactosemia, phenylketonuria or other genetic diseases
being screened under this statute ; conditions identified by the secretary in
accordance with subsection (i) and establish ongoing education and
support activities for individuals with confirmed diagnosis of congenital
hypothyroidism, galactosemia, phenylketonuria and other genetic diseases
being screened under this statute and for the families of such individuals
such conditions.
(d) Maintain a registry of cases including information of importance
for the purpose of follow-up services to prevent intellectual support early
diagnosis, treatment and services for healthy development and the
prevention of disability or morbidity.
(e) Provide, within the limits of appropriations available therefor, the
necessary treatment product for diagnosed cases conditions identified by
the secretary in accordance with subsection (i) for as long as medically
indicated, when and the product is not available through other state
agencies. In addition to diagnosed cases under this section, diagnosed
cases of maple syrup urine disease shall be included as a diagnosed case
under this subsection. Where If the applicable income of the person or
persons who have legal responsibility for the diagnosed individual meets
medicaid eligibility, such individuals' individual's needs shall be covered
under the medicaid state plan. Where If the applicable income of the
person or persons who have legal responsibility for the diagnosed
individual is not medicaid eligible, but is below 300% of the federal
poverty level established under the most recent poverty guidelines issued
by the United States department of health and human services, the
department of health and environment shall provide reimbursement of
between 50% to 100% of the product cost in accordance with rules and
regulations adopted by the secretary of health and environment. Where If
the applicable income of the person or persons who have legal
responsibility for the diagnosed individual exceeds 300% of the federal
poverty level established under the most recent poverty guidelines issued
by the United States department of health and human services, the
department of health and environment shall provide reimbursement of an
amount not to exceed 50% of the product cost in accordance with rules and
regulations adopted by the secretary of health and environment.
(f) Provide state assistance to an applicant pursuant to subsection (e)
only after it has been shown that the applicant has exhausted all benefits
from private third-party payers, medicare, medicaid and other government
assistance programs and after consideration of the applicant's income and
assets. The secretary of health and environment shall adopt rules and
regulations establishing standards for determining eligibility for state
assistance under this section.
(g) (1) Except for treatment products provided under subsection (e), if
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the secretary of health and environment shall adopt rules and regulations
as needed to determine eligibility for reimbursement to individuals for the
purchase of medically necessary food treatment product for diagnosed
cases must be purchased, the purchaser shall be reimbursed by the
department of health and environment for costs incurred up to $1,500 per
year per diagnosed child age 18 or younger at 100% of the product cost
upon submission of a receipt of purchase identifying the company from
which the product was purchased. For a purchaser to be eligible for
reimbursement under this subsection, the applicable income of the person
or persons who have legal responsibility for the diagnosed child shall not
exceed 300% of the poverty level established under the most recent
poverty guidelines issued by the federal department of health and human
services conditions identified by the secretary in accordance with
subsection (i).
(2) As an option to reimbursement authorized under subsection (g)(1)
paragraph (1) , the department of health and environment may purchase
medically necessary food treatment products for distribution to diagnosed
children in an amount not to exceed $1,500 per year per diagnosed child
age 18 or younger. For a diagnosed child to be eligible for the distribution
of food treatment products under this subsection, the applicable income of
the person or persons who have legal responsibility for the diagnosed child
shall not exceed 300% of the poverty level established under the most
recent poverty guidelines issued by the federal department of health and
human services individuals diagnosed with conditions identified by the
secretary in accordance with subsection (i).
(3) In addition to diagnosed cases under this section, diagnosed cases
of maple syrup urine disease shall be included as a diagnosed case under
this subsection.
(h) The department of health and environment shall continue to
receive orders for both medically necessary treatment products and
medically necessary food treatment products, purchase such products , and
shall deliver the such products to an address prescribed by the diagnosed
individual. The department of health and environment shall bill the person
or persons who have legal responsibility for the diagnosed patient
individual for a pro-rata share of the total costs, in accordance with the
rules and regulations adopted pursuant to this section.
(i) The secretary of health and environment shall adopt rules and
regulations as needed to require, to the extent of available funding,
newborn screening tests to screen for treatable disorders conditions. The
secretary shall determine and identify the conditions to be included in the
newborn screening tests, which may include, but not be limited to,
conditions listed in the core recommended uniform screening panel of
newborn screening conditions recommended in the 2005 report by the
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American college of medical genetics entitled "Newborn Screening:
Toward a Uniform Screening Panel and System" issued by the United
States secretary of health and human services or another report determined
by the department of health and environment to provide more appropriate
newborn screening guidelines to protect the health and welfare of
newborns for treatable disorders conditions.
(j) In performing the duties under subsection (i), the secretary of
health and environment shall appoint an advisory council to advise the
department of health and environment on implementation of subsection (i).
(k) The department of health and environment shall periodically
review the newborn screening program to determine the efficacy and cost
effectiveness of the program and determine whether adjustments to the
program are necessary to protect the health and welfare of newborns and
to maximize the number of newborn screenings that may be conducted
with the funding available for the screening program.
(l) There is hereby established in the state treasury the Kansas
newborn screening fund that, which shall be administered by the secretary
of health and environment. All expenditures from the fund shall be for the
newborn screening program. All expenditures from the fund shall be made
in accordance with appropriation acts upon warrants of the director of
accounts and reports issued pursuant to vouchers approved by the
secretary of health and environment or the secretary's designee. On July 1
of each year, the director of accounts and reports shall determine the
amount credited to the medical assistance fee fund pursuant to K.S.A. 40-
3213, and amendments thereto, and shall transfer the estimated portion of
such amount that is necessary to fund the newborn screening program for
the ensuing fiscal year as certified by the secretary of health and
environment or the secretary's designee to the Kansas newborn screening
fund. Such amount shall not exceed $5,000,000 in fiscal years 2024, 2025
and 2026.
Sec. 2. K.S.A. 65-181 is hereby amended to read as follows: 65-181.
The administrative officer or other person in charge of each institution or
the attending physician, caring for infants 28 days of age or younger shall
have administered to every such infant or child in its or such institution's
or physician's care, tests for congenital hypothyroidism, galactosemia,
phenylketonuria and other genetic diseases which may be detected with
the same specimen conditions identified by the secretary of health and
environment under K.S.A. 65-180(i), and amendments thereto, in
accordance with rules and regulations adopted by the secretary of health
and environment.
Sec. 3. K.S.A. 65-183 is hereby amended to read as follows: 65-183.
Every physician having knowledge of a case of congenital
hypothyroidism, galactosemia or phenylketonuria and other genetic
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diseases as may be detected with tests given pursuant to this act a
condition identified by the secretary of health and environment under
K.S.A. 65-180(i), and amendments thereto, in one of such physician's own
patients shall report the case to the secretary of health and environment on
forms provided by the secretary.
Sec. 4. K.S.A. 65-181 and 65-183 and K.S.A. 2024 Supp. 65-180 are
hereby repealed.
Sec. 5. This act shall take effect and be in force from and after its
publication in the Kansas register.
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