Article 1.--SECRETARY OF HEALTH AND ENVIRONMENT, ACTIVITIES
65-180.Educational, screening, testing andfollow-up program concerningphenylketonuria, congenital hypothyroidism, galactosemia, maple syrup urinedisease and certain other genetic diseases; registry of cases; food andtreatment products; reimbursement of cost; eligibility; newborn screeningprograms.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 congenitalhypothyroidism, galactosemia, phenylketonuria and other genetic diseasesdetectable with the same specimen. This educational program shall includeinformation about the nature of such conditions and examinations for thedetection thereof in early infancy in order that measures may be taken toprevent the mental retardation or morbidity resulting from such conditions.
(b) Provide recognized screening tests for phenylketonuria, galactosemia,hypothyroidism and such other diseases as may be appropriately detected withthe same specimen. The initial laboratory screening tests for these diseasesshall be performed by the department of health and environment or itsdesignee for all infants born in the state. Such services shall beperformed without charge.
(c) Provide a follow-up program by providing test results and otherinformation to identified physicians; locate infants with abnormal newbornscreening test results; with parental consent, monitor infants to assureappropriate testing to either confirm or not confirm the disease suggestedby the screening test results; with parental consent, monitor therapy andtreatment for infants with confirmed diagnosis of congenital hypothyroidism,galactosemia, phenylketonuria or other genetic diseases being screened underthis statute; and establish ongoing education and support activities forindividuals with confirmed diagnosis of congenital hypothyroidism,galactosemia, phenylketonuria and other genetic diseases being screened underthis statute and for the families of such individuals.
(d) Maintain a registry of cases including information of importance for thepurpose of follow-up services to prevent mental retardation or morbidity.
(e) Provide, within the limits of appropriations available therefor, thenecessary treatment product for diagnosed cases for as long as medicallyindicated, when the product is not available through other state agencies. Inaddition to diagnosed cases under this section, diagnosed cases of maple syrupurine disease shall be included as a diagnosed case under this subsection.Where the applicable income of the person or persons who have legalresponsibility for the diagnosed individual meets medicaid eligibility, suchindividuals' needs shall be covered under the medicaid state plan. Where theapplicable income of the person or persons who have legal responsibility forthe diagnosed individual is not medicaid eligible, but is below 300% of thefederal poverty level established under the most recent poverty guidelinesissued by the United States department of health and human services, thedepartment of health and environment shall provide reimbursement of between 50%to 100% of the product cost in accordance with rules and regulations adopted bythe secretary of health and environment. Where the applicable income of theperson or persons who have legal responsibility for the diagnosed individualexceeds 300% of the federal poverty level established under the most recentpoverty guidelines issued by the United States department of health and humanservices, the department of health and environment shall provide reimbursementof an amount not to exceed 50% of the product cost in accordance with rules andregulations adopted by the secretary of health and environment.
(f) Provide state assistance to an applicant pursuant to subsection (e) onlyafter it has been shown that the applicant has exhausted all benefits fromprivate third-party payers, medicare, medicaid and other government assistanceprograms and after consideration of the applicant's income and assets. Thesecretary of health and environment shall adopt rules and regulationsestablishing standards for determining eligibility for state assistance underthis section.
(g) (1) Except for treatment products provided under subsection (e), if themedically necessary food treatment product for diagnosed cases must bepurchased, the purchaser shall be reimbursed by the department of health andenvironment for costs incurred up to $1,500 per year per diagnosed child age 18or younger at 100% of the product cost upon submission of a receipt of purchaseidentifying the company from which the product was purchased. For a purchaserto be eligible for reimbursement under this subsection (g)(1), the applicableincome of the person or persons who have legal responsibility for the diagnosedchild shall not exceed 300% of the poverty level established under the mostrecent poverty guidelines issued by the federal department of healthand human services.
(2) As an option to reimbursement authorized under subsection (g)(1), thedepartment of health and environment may purchase food treatment products fordistribution to diagnosed children in an amount not to exceed $1,500 per yearper diagnosed child age 18 or younger. For a diagnosed child to be eligible forthe distribution of food treatment products under this subsection (g)(2), theapplicable income of the person or persons who have legal responsibility forthe diagnosed child shall not exceed 300% of the poverty level establishedunder the most recent poverty guidelines issued by the federal department ofhealth and human services.
(3) In addition to diagnosed cases under this section, diagnosed cases ofmaple syrup urine disease shall be included as a diagnosed case under thissubsection (g).
(h) The department of health and environment shall continue to receive ordersfor both necessary treatment products and necessary food treatment products,purchase such products, and shall deliver the products to an address prescribedby the diagnosed individual. The department of health and environment shallbill the person or persons who have legal responsibility for the diagnosedpatient for a pro-rata share of the total costs, in accordance with the rulesand regulations adopted pursuant to this section.
(i) Not later than July 1, 2008, the secretary of health and environmentshall adopt rules and regulations as needed to require, to the extent ofavailable funding, newborn screening tests to screen for treatable disorderslisted inthe core uniform panel of newborn screening conditions recommended in the 2005report by the American college of medical genetics entitled "Newborn Screening:Toward a Uniform Screening Panel and System" or another report determined bythe department of health and environment to provide more appropriate newbornscreening guidelines to protect the health and welfare of newborns fortreatable disorders.
(j) In performing the duties under subsection (i), the secretary of healthand environment shall appoint an advisory council to advise the department ofhealth and environment on implementation of subsection (i).
(k) The department of health and environment shall periodically review thenewborn screening program to determine the efficacy and cost effectiveness ofthe program and determine whether adjustments to the program are necessary toprotect the health and welfare of newborns and to maximize the number ofnewborn screenings that may be conducted with the funding available for thescreening program.
Article 1.--SECRETARY OF HEALTH AND ENVIRONMENT, ACTIVITIES
65-180.Educational, screening, testing andfollow-up program concerningphenylketonuria, congenital hypothyroidism, galactosemia, maple syrup urinedisease and certain other genetic diseases; registry of cases; food andtreatment products; reimbursement of cost; eligibility; newborn screeningprograms.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 congenitalhypothyroidism, galactosemia, phenylketonuria and other genetic diseasesdetectable with the same specimen. This educational program shall includeinformation about the nature of such conditions and examinations for thedetection thereof in early infancy in order that measures may be taken toprevent the mental retardation or morbidity resulting from such conditions.
(b) Provide recognized screening tests for phenylketonuria, galactosemia,hypothyroidism and such other diseases as may be appropriately detected withthe same specimen. The initial laboratory screening tests for these diseasesshall be performed by the department of health and environment or itsdesignee for all infants born in the state. Such services shall beperformed without charge.
(c) Provide a follow-up program by providing test results and otherinformation to identified physicians; locate infants with abnormal newbornscreening test results; with parental consent, monitor infants to assureappropriate testing to either confirm or not confirm the disease suggestedby the screening test results; with parental consent, monitor therapy andtreatment for infants with confirmed diagnosis of congenital hypothyroidism,galactosemia, phenylketonuria or other genetic diseases being screened underthis statute; and establish ongoing education and support activities forindividuals with confirmed diagnosis of congenital hypothyroidism,galactosemia, phenylketonuria and other genetic diseases being screened underthis statute and for the families of such individuals.
(d) Maintain a registry of cases including information of importance for thepurpose of follow-up services to prevent mental retardation or morbidity.
(e) Provide, within the limits of appropriations available therefor, thenecessary treatment product for diagnosed cases for as long as medicallyindicated, when the product is not available through other state agencies. Inaddition to diagnosed cases under this section, diagnosed cases of maple syrupurine disease shall be included as a diagnosed case under this subsection.Where the applicable income of the person or persons who have legalresponsibility for the diagnosed individual meets medicaid eligibility, suchindividuals' needs shall be covered under the medicaid state plan. Where theapplicable income of the person or persons who have legal responsibility forthe diagnosed individual is not medicaid eligible, but is below 300% of thefederal poverty level established under the most recent poverty guidelinesissued by the United States department of health and human services, thedepartment of health and environment shall provide reimbursement of between 50%to 100% of the product cost in accordance with rules and regulations adopted bythe secretary of health and environment. Where the applicable income of theperson or persons who have legal responsibility for the diagnosed individualexceeds 300% of the federal poverty level established under the most recentpoverty guidelines issued by the United States department of health and humanservices, the department of health and environment shall provide reimbursementof an amount not to exceed 50% of the product cost in accordance with rules andregulations adopted by the secretary of health and environment.
(f) Provide state assistance to an applicant pursuant to subsection (e) onlyafter it has been shown that the applicant has exhausted all benefits fromprivate third-party payers, medicare, medicaid and other government assistanceprograms and after consideration of the applicant's income and assets. Thesecretary of health and environment shall adopt rules and regulationsestablishing standards for determining eligibility for state assistance underthis section.
(g) (1) Except for treatment products provided under subsection (e), if themedically necessary food treatment product for diagnosed cases must bepurchased, the purchaser shall be reimbursed by the department of health andenvironment for costs incurred up to $1,500 per year per diagnosed child age 18or younger at 100% of the product cost upon submission of a receipt of purchaseidentifying the company from which the product was purchased. For a purchaserto be eligible for reimbursement under this subsection (g)(1), the applicableincome of the person or persons who have legal responsibility for the diagnosedchild shall not exceed 300% of the poverty level established under the mostrecent poverty guidelines issued by the federal department of healthand human services.
(2) As an option to reimbursement authorized under subsection (g)(1), thedepartment of health and environment may purchase food treatment products fordistribution to diagnosed children in an amount not to exceed $1,500 per yearper diagnosed child age 18 or younger. For a diagnosed child to be eligible forthe distribution of food treatment products under this subsection (g)(2), theapplicable income of the person or persons who have legal responsibility forthe diagnosed child shall not exceed 300% of the poverty level establishedunder the most recent poverty guidelines issued by the federal department ofhealth and human services.
(3) In addition to diagnosed cases under this section, diagnosed cases ofmaple syrup urine disease shall be included as a diagnosed case under thissubsection (g).
(h) The department of health and environment shall continue to receive ordersfor both necessary treatment products and necessary food treatment products,purchase such products, and shall deliver the products to an address prescribedby the diagnosed individual. The department of health and environment shallbill the person or persons who have legal responsibility for the diagnosedpatient for a pro-rata share of the total costs, in accordance with the rulesand regulations adopted pursuant to this section.
(i) Not later than July 1, 2008, the secretary of health and environmentshall adopt rules and regulations as needed to require, to the extent ofavailable funding, newborn screening tests to screen for treatable disorderslisted inthe core uniform panel of newborn screening conditions recommended in the 2005report by the American college of medical genetics entitled "Newborn Screening:Toward a Uniform Screening Panel and System" or another report determined bythe department of health and environment to provide more appropriate newbornscreening guidelines to protect the health and welfare of newborns fortreatable disorders.
(j) In performing the duties under subsection (i), the secretary of healthand environment shall appoint an advisory council to advise the department ofhealth and environment on implementation of subsection (i).
(k) The department of health and environment shall periodically review thenewborn screening program to determine the efficacy and cost effectiveness ofthe program and determine whether adjustments to the program are necessary toprotect the health and welfare of newborns and to maximize the number ofnewborn screenings that may be conducted with the funding available for thescreening program.
Article 1.--SECRETARY OF HEALTH AND ENVIRONMENT, ACTIVITIES
65-180.Educational, screening, testing andfollow-up program concerningphenylketonuria, congenital hypothyroidism, galactosemia, maple syrup urinedisease and certain other genetic diseases; registry of cases; food andtreatment products; reimbursement of cost; eligibility; newborn screeningprograms.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 congenitalhypothyroidism, galactosemia, phenylketonuria and other genetic diseasesdetectable with the same specimen. This educational program shall includeinformation about the nature of such conditions and examinations for thedetection thereof in early infancy in order that measures may be taken toprevent the mental retardation or morbidity resulting from such conditions.
(b) Provide recognized screening tests for phenylketonuria, galactosemia,hypothyroidism and such other diseases as may be appropriately detected withthe same specimen. The initial laboratory screening tests for these diseasesshall be performed by the department of health and environment or itsdesignee for all infants born in the state. Such services shall beperformed without charge.
(c) Provide a follow-up program by providing test results and otherinformation to identified physicians; locate infants with abnormal newbornscreening test results; with parental consent, monitor infants to assureappropriate testing to either confirm or not confirm the disease suggestedby the screening test results; with parental consent, monitor therapy andtreatment for infants with confirmed diagnosis of congenital hypothyroidism,galactosemia, phenylketonuria or other genetic diseases being screened underthis statute; and establish ongoing education and support activities forindividuals with confirmed diagnosis of congenital hypothyroidism,galactosemia, phenylketonuria and other genetic diseases being screened underthis statute and for the families of such individuals.
(d) Maintain a registry of cases including information of importance for thepurpose of follow-up services to prevent mental retardation or morbidity.
(e) Provide, within the limits of appropriations available therefor, thenecessary treatment product for diagnosed cases for as long as medicallyindicated, when the product is not available through other state agencies. Inaddition to diagnosed cases under this section, diagnosed cases of maple syrupurine disease shall be included as a diagnosed case under this subsection.Where the applicable income of the person or persons who have legalresponsibility for the diagnosed individual meets medicaid eligibility, suchindividuals' needs shall be covered under the medicaid state plan. Where theapplicable income of the person or persons who have legal responsibility forthe diagnosed individual is not medicaid eligible, but is below 300% of thefederal poverty level established under the most recent poverty guidelinesissued by the United States department of health and human services, thedepartment of health and environment shall provide reimbursement of between 50%to 100% of the product cost in accordance with rules and regulations adopted bythe secretary of health and environment. Where the applicable income of theperson or persons who have legal responsibility for the diagnosed individualexceeds 300% of the federal poverty level established under the most recentpoverty guidelines issued by the United States department of health and humanservices, the department of health and environment shall provide reimbursementof an amount not to exceed 50% of the product cost in accordance with rules andregulations adopted by the secretary of health and environment.
(f) Provide state assistance to an applicant pursuant to subsection (e) onlyafter it has been shown that the applicant has exhausted all benefits fromprivate third-party payers, medicare, medicaid and other government assistanceprograms and after consideration of the applicant's income and assets. Thesecretary of health and environment shall adopt rules and regulationsestablishing standards for determining eligibility for state assistance underthis section.
(g) (1) Except for treatment products provided under subsection (e), if themedically necessary food treatment product for diagnosed cases must bepurchased, the purchaser shall be reimbursed by the department of health andenvironment for costs incurred up to $1,500 per year per diagnosed child age 18or younger at 100% of the product cost upon submission of a receipt of purchaseidentifying the company from which the product was purchased. For a purchaserto be eligible for reimbursement under this subsection (g)(1), the applicableincome of the person or persons who have legal responsibility for the diagnosedchild shall not exceed 300% of the poverty level established under the mostrecent poverty guidelines issued by the federal department of healthand human services.
(2) As an option to reimbursement authorized under subsection (g)(1), thedepartment of health and environment may purchase food treatment products fordistribution to diagnosed children in an amount not to exceed $1,500 per yearper diagnosed child age 18 or younger. For a diagnosed child to be eligible forthe distribution of food treatment products under this subsection (g)(2), theapplicable income of the person or persons who have legal responsibility forthe diagnosed child shall not exceed 300% of the poverty level establishedunder the most recent poverty guidelines issued by the federal department ofhealth and human services.
(3) In addition to diagnosed cases under this section, diagnosed cases ofmaple syrup urine disease shall be included as a diagnosed case under thissubsection (g).
(h) The department of health and environment shall continue to receive ordersfor both necessary treatment products and necessary food treatment products,purchase such products, and shall deliver the products to an address prescribedby the diagnosed individual. The department of health and environment shallbill the person or persons who have legal responsibility for the diagnosedpatient for a pro-rata share of the total costs, in accordance with the rulesand regulations adopted pursuant to this section.
(i) Not later than July 1, 2008, the secretary of health and environmentshall adopt rules and regulations as needed to require, to the extent ofavailable funding, newborn screening tests to screen for treatable disorderslisted inthe core uniform panel of newborn screening conditions recommended in the 2005report by the American college of medical genetics entitled "Newborn Screening:Toward a Uniform Screening Panel and System" or another report determined bythe department of health and environment to provide more appropriate newbornscreening guidelines to protect the health and welfare of newborns fortreatable disorders.
(j) In performing the duties under subsection (i), the secretary of healthand environment shall appoint an advisory council to advise the department ofhealth and environment on implementation of subsection (i).
(k) The department of health and environment shall periodically review thenewborn screening program to determine the efficacy and cost effectiveness ofthe program and determine whether adjustments to the program are necessary toprotect the health and welfare of newborns and to maximize the number ofnewborn screenings that may be conducted with the funding available for thescreening program.
