K.S.A. § 65-180 — KS Code / Chapter 65 / Article 1 / Section 65-180
65-180 - Educational, screening, testing and follow-up program concerning phenylketonuria, congenital hypothyroidism, galactosemia, maple syrup urine disease and certain other genetic diseases; advance universal newborn screening program established; registry of cases; medically necessary food and treatment products; reimbursement of cost; eligibility; newborn screening programs; Kansas newborn screening fund; transfers from medical assistance fee fund; limitations. [See Revisor's Note]
Status: in_force

65-180. Educational, screening, testing and follow-up program concerning phenylketonuria, congenital hypothyroidism, galactosemia, maple syrup urine disease and certain other genetic diseases; advance universal newborn screening program established; registry of cases; medically necessary food and treatment products; reimbursement of cost; eligibility; newborn screening programs; Kansas newborn screening fund; transfers from medical assistance fee fund; limitations. [See Revisor's Note] 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, mid-level practitioners, as defined in K.S.A. 65-1626, and amendments thereto, hospitals, public health nurses and the public concerning 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 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 or mid-level practitioners as defined in K.S.A. 65-1626, and amendments thereto; 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 conditions identified by the secretary in accordance with subsection (i) and establish ongoing education and support activities for individuals with confirmed diagnosis of such conditions.

(d) Maintain a registry of cases including information of importance for the purpose of follow-up services to 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 conditions identified by the secretary in accordance with subsection (i) for as long as medically indicated and the product is not available through other state agencies. If the applicable income of the person or persons who have legal responsibility for the diagnosed individual meets medicaid eligibility, such individual's needs shall be covered under the medicaid state plan. 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. 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), 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 conditions identified by the secretary in accordance with subsection (i).

(2) As an option to reimbursement authorized under paragraph (1), the department of health and environment may purchase medically necessary food treatment products for distribution to individuals diagnosed with conditions identified by the secretary in accordance with subsection (i).

(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 deliver 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 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 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 recommended uniform screening panel 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 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, 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.