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| To amend sections 3701.131 and 3701.501 of the | 1 |
| Revised Code to establish five Ohio Sickle Cell | 2 |
| Anemia Comprehensive Treatment Centers. | 3 |
| Section 1. That sections 3701.131 and 3701.501 of the Revised | 4 |
| Code be amended to read as follows: | 5 |
| Sec. 3701.131. (A) The director of health shall do all of the | 6 |
| following: | 7 |
| | 8 |
| education and research pertaining to the causes, detection, and | 9 |
| treatment of sickle cell disease and provide for rehabilitation | 10 |
| and counseling of persons possessing the trait of or afflicted | 11 |
| with this disease; | 12 |
| | 13 |
| contract or otherwise, agencies of this state and the federal | 14 |
| government, agencies of the governments of other states, agencies | 15 |
| of political subdivisions of this state, and private | 16 |
| organizations, corporations, and associations in the development | 17 |
| and promotion of programs pertaining to the causes, detection, and | 18 |
| treatment of sickle cell disease and rehabilitation and counseling | 19 |
| of persons possessing the trait of or afflicted with this disease; | 20 |
| | 21 |
| government or other sources, public or private, for carrying out | 22 |
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any of the functions enumerated in divisions (A)(1) and | 23 |
| this section; | 24 |
| | 25 |
| before the twenty-first day of August of each year outlining the | 26 |
| receipt and disbursement of funds and the implementation and | 27 |
| progress of various programs undertaken pursuant to division (A) | 28 |
| of this section during the preceding fiscal year. | 29 |
| (B)(1) The director shall establish in this state five sickle | 30 |
| cell anemia comprehensive treatment centers primarily for adult | 31 |
| patients. Each center established under this division shall be | 32 |
| designated an Ohio sickle cell comprehensive treatment center and | 33 |
| shall be located at a hospital that is a primary teaching and | 34 |
| research institution associated with a medical school. | 35 |
| (2) To have a sickle cell anemia comprehensive treatment | 36 |
| center established under division (B) of this section a hospital | 37 |
| must meet all of the following requirements: | 38 |
| (a) Demonstrate commitment to the care, management, and | 39 |
| research of the disorder of sickle cell anemia and related | 40 |
| conditions; | 41 |
| (b) Have uniform management plans for the hospital's | 42 |
| emergency department care and inpatient care; | 43 |
| (c) Have established, prior to establishment of the | 44 |
| comprehensive treatment center, an outpatient sickle cell anemia | 45 |
| day hospital for alternative care of patients with sickle cell | 46 |
| anemia; | 47 |
| (d) Have a collaborative agreement with at least one of the | 48 |
| following: | 49 |
| (i) A community-based sickle-cell-anemia entity with | 50 |
| experience working with individuals, especially adults, with | 51 |
| sickle cell anemia; | 52 |
| (ii) A nonprofit entity with experience working with | 53 |
| individuals, especially adults, with sickle cell anemia. | 54 |
| (3) If funds are appropriated for this purpose, the director | 55 |
| shall annually distribute to each center established under | 56 |
| division (B) of this section funds for a full-time dedicated nurse | 57 |
| practitioner and social worker and partial salary support for a | 58 |
| medical director who is authorized by the state medical board to | 59 |
| practice medicine and surgery and osteopathic medicine and | 60 |
| surgery. | 61 |
| Sec. 3701.501. (A)(1) Except as provided in division (A)(2) | 62 |
| of this section, all newborn children shall be screened for the | 63 |
| presence of the genetic, endocrine, and metabolic disorders | 64 |
| specified in rules, adopted pursuant to this section. | 65 |
| (2) Division (A)(1) of this section does not apply if the | 66 |
| parents of the child object thereto on the grounds that the | 67 |
| screening conflicts with their religious tenets and practices. | 68 |
| (B) There is hereby created the newborn screening advisory | 69 |
| council to advise the director of health regarding the screening | 70 |
| of newborn children for genetic, endocrine, and metabolic | 71 |
| disorders. The council shall engage in an ongoing review of the | 72 |
| newborn screening requirements established under this section and | 73 |
| shall provide recommendations and reports to the director as the | 74 |
| director requests and as the council considers necessary. The | 75 |
| director may assign other duties to the council, as the director | 76 |
| considers appropriate. | 77 |
| The council shall consist of fourteen members appointed by | 78 |
| the director. In making appointments, the director shall select | 79 |
| individuals and representatives of entities with interest and | 80 |
| expertise in newborn screening, including such individuals and | 81 |
| entities as health care professionals, hospitals, children's | 82 |
| hospitals, regional genetic centers, regional sickle cell centers, | 83 |
| newborn screening coordinators, and members of the public. | 84 |
| The department of health shall provide meeting space, staff | 85 |
| services, and other technical assistance required by the council | 86 |
| in carrying out its duties. Members of the council shall serve | 87 |
| without compensation, but shall be reimbursed for their actual and | 88 |
| necessary expenses incurred in attending meetings of the council | 89 |
| or performing assignments for the council. | 90 |
| The council is not subject to sections 101.82 to 101.87 of | 91 |
| the Revised Code. | 92 |
| (C)(1) The director of health shall adopt rules in accordance | 93 |
| with Chapter 119. of the Revised Code specifying the disorders for | 94 |
| which each newborn child must be screened. | 95 |
| (2) The newborn screening advisory council shall evaluate | 96 |
| genetic, metabolic, and endocrine disorders to assist the director | 97 |
| in determining which disorders should be included in the | 98 |
| screenings required under this section. In determining whether a | 99 |
| disorder should be included, the council shall consider all of the | 100 |
| following: | 101 |
| (a) The disorder's incidence, mortality, and morbidity; | 102 |
| (b) Whether the disorder causes disability if diagnosis, | 103 |
| treatment, and early intervention are delayed; | 104 |
| (c) The potential for successful treatment of the disorder; | 105 |
| (d) The expected benefits to children and society in relation | 106 |
| to the risks and costs associated with screening for the disorder; | 107 |
| (e) Whether a screening for the disorder can be conducted | 108 |
| without taking an additional blood sample or specimen. | 109 |
| (3) Based on the considerations specified in division (C)(2) | 110 |
| of this section, the council shall make recommendations to the | 111 |
| director of health for the adoption of rules under division (C)(1) | 112 |
| of this section. The director shall promptly and thoroughly review | 113 |
| each recommendation the council submits. | 114 |
| (D) The director shall adopt rules in accordance with Chapter | 115 |
| 119. of the Revised Code establishing standards and procedures for | 116 |
| the screenings required by this section. The rules shall include | 117 |
| standards and procedures for all of the following: | 118 |
| (1) Causing rescreenings to be performed when initial | 119 |
| screenings have abnormal results; | 120 |
| (2) Designating the person or persons who will be responsible | 121 |
| for causing screenings and rescreenings to be performed; | 122 |
| (3) Giving to the parents of a child notice of the required | 123 |
| initial screening and the possibility that rescreenings may be | 124 |
| necessary; | 125 |
| (4) Communicating to the parents of a child the results of | 126 |
| the child's screening and any rescreenings that are performed; | 127 |
| (5) Giving notice of the results of an initial screening and | 128 |
| any rescreenings to the person who caused the child to be screened | 129 |
| or rescreened, or to another person or government entity when the | 130 |
| person who caused the child to be screened or rescreened cannot be | 131 |
| contacted; | 132 |
| (6) Referring children who receive abnormal screening or | 133 |
| rescreening results to providers of follow-up services, including | 134 |
| the services made available through funds disbursed under division | 135 |
| (F) of this section. | 136 |
| (E)(1) Except as provided in divisions (E)(2) and (3) of this | 137 |
| section, all newborn screenings required by this section shall be | 138 |
| performed by the public health laboratory authorized under section | 139 |
| 3701.22 of the Revised Code. | 140 |
| (2) If the director determines that the public health | 141 |
| laboratory is unable to perform screenings for all of the | 142 |
| disorders specified in the rules adopted under division (C) of | 143 |
| this section, the director shall select another laboratory to | 144 |
| perform the screenings. The director shall select the laboratory | 145 |
| by issuing a request for proposals. The director may accept | 146 |
| proposals submitted by laboratories located outside this state. At | 147 |
| the conclusion of the selection process, the director shall enter | 148 |
| into a written contract with the selected laboratory. If the | 149 |
| director determines that the laboratory is not complying with the | 150 |
| terms of the contract, the director shall immediately terminate | 151 |
| the contract and another laboratory shall be selected and | 152 |
| contracted with in the same manner. | 153 |
| (3) Any rescreening caused to be performed pursuant to this | 154 |
| section may be performed by the public health laboratory or one or | 155 |
| more other laboratories designated by the director. Any laboratory | 156 |
| the director considers qualified to perform rescreenings may be | 157 |
| designated, including a laboratory located outside this state. If | 158 |
| more than one laboratory is designated, the person responsible for | 159 |
| causing a rescreening to be performed is also responsible for | 160 |
| selecting the laboratory to be used. | 161 |
| (F)(1) The director shall adopt rules in accordance with | 162 |
| Chapter 119. of the Revised Code establishing a fee that shall be | 163 |
| charged and collected in addition to or in conjunction with any | 164 |
| laboratory fee that is charged and collected for performing the | 165 |
| screenings required by this section. The fee, which shall be not | 166 |
| less than fourteen dollars, shall be disbursed as follows: | 167 |
| (a) Not less than ten dollars and twenty-five cents shall be | 168 |
| deposited in the state treasury to the credit of the genetics | 169 |
| services fund, which is hereby created. Not less than seven | 170 |
| dollars and twenty-five cents of each fee credited to the genetics | 171 |
| services fund shall be used to defray the costs of the programs | 172 |
| authorized by section 3701.502 of the Revised Code. Not less than | 173 |
| three dollars from each fee credited to the genetics services fund | 174 |
| shall be used to defray costs of phenylketonuria programs. | 175 |
| (b) Not less than three dollars and seventy-five cents shall | 176 |
| be deposited into the state treasury to the credit of the sickle | 177 |
| cell fund, which is hereby created. Money credited to the sickle | 178 |
| cell fund shall be used to defray costs of programs authorized by | 179 |
| division (A) of section 3701.131 of the Revised Code. | 180 |
| (2) In adopting rules under division (F)(1) of this section, | 181 |
| the director shall not establish a fee that differs according to | 182 |
| whether a screening is performed by the public health laboratory | 183 |
| or by another laboratory selected by the director pursuant to | 184 |
| division (E)(2) of this section. | 185 |
| Section 2. That existing sections 3701.131 and 3701.501 of | 186 |
| the Revised Code are hereby repealed. | 187 |
| Section 3. The General Assembly finds that establishment of | 188 |
| Ohio Sickle Cell Comprehensive Treatment Centers, as required by | 189 |
| this act's amendment of section 3701.131 of the Revised Code, is | 190 |
| likely to reduce the cost of treating a patient with sickle cell | 191 |
| anemia and that this cost was, on average in 2004, $6,223 per | 192 |
| hospitalization of a patient with sickle cell anemia. | 193 |