Delta State Sickle Cell Disorder Control Law, 2023

DELTA STATE SICKLE CELL DISORDER CONTROL LAW, 2023

1. Short title. This Law may be cited as the Delta State Sickle Cell Disorder Control Law, 2023 and shall commence on the date it receives the Governor’s assent.

2. Interpretation. In this Law, unless the context otherwise requires: "Commissioner" means the Commissioner in charge of the Ministry of Health; "Existing Centre(s)" means all Sickle Cell Disorders Management and Treatment Centre(s) in the State including those established and equipped under the, 05 Initiative Programme before the commencement of this Law; "Government" means the Government of Delta State; "Governor" means the Governor of Delta State; "Health Facilities" means any government owned facility in the State where healthcare service is provided and shall include public healthcare centres and clinics "Ministry" means the Delta State Ministry of Health; "Primary Treatment Centres" means Treatment Centres established in all Primary Health Care Centres and General Hospitals in the State; "Programme" means Delta State Sickle Cell Disorder Control Programme; "Programme Focal Person" means the Coordinator of the Sickle Cell Disorder Control Programme; "Secretariat" means the administrative office for the Delta State Sickle Cell Disorder Control Programme; "Secondary Treatment Centres" means Treatment Centres to be established in all Central Hospitals in the State; "Sickle Cell Disorder" means an inherited blood Disorder marked by defective haemoglobin; "Sickle Cell Disorder Patient" means person(s) affected by Sickle Cell Disorder; "State" means Delta State; "Tertiary Treatment Centre" means Sickle Cell Disorder Centre to be established at the Specialist Hospital, Asaba.

3. Establishment of Sickle Cell Disorder Programme. (1) There stands established in the Ministry of Health the Delta State Sickle Cell Disorder Control Programme (the "Programme") (2) The Programme shall be domiciled in the Public Health Department of the Ministry and its Secretariat shall be located within the Ministry.

4. Objectives of the Programme. The objective of the Programme shall be to: (a) Facilitate the engagement of all tiers of Government and all sectors on issues of Sickle Cell Disorder prevention, treatment, care and support. (b) Advocate for mainstreaming Sickle Cell Disorder interventions into all sectors of State. (c) Promote, improve and support research, training and learning in Sickle Cell Disorder. (d) Create awareness on Sickle Cell Disorder. (e) Protect patients' rights including the right to humane treatment and freedom from abuse. (f) Promote and coordinate partnerships and collaborations with national and international organisations.

5. Appointment of Focal Person for the Programme. (1) There shall be a Programme Focal Person who shall be appointed by the Commissioner. (2) The Programme Focal Person shall be a Medical Doctor in the State Ministry of Health who shall either be: [Qualification of the Programme Focal Person.] (a) a Consultant Paediatrician; or (b) 2 Consultant Haematologist; or (c) a Consultant Public Health Physician. (3) Where any of the Consultants stated in sub-section (2) (a) - (c) of this Section is not available, a Medical Doctor not below the rank of a Principal Medical Officer in the Ministry may be appointed as a Programme Focal Person. (4) A person shall not be qualified to be appointed as the Programme Focal Person unless he or she has at least ten (10) years post qualification experience and an outstanding professional capability in Sickle Cell Disease management and treatment. (5) In addition to the qualifications contained in sub-section (2), (3) and (4) of this section, the Programme Focal Person shall: (a) be a person of proven integrity; (b) not be convicted of felony or any offence involving dishonesty or fraud; (c) not be an un-discharged bankrupt; and (d) not be or become of unsound mind or incapable of discharging the functions of that office.

6. Staff for the Programme. (1) The Commissioner shall deploy such number of staff from the Ministry as he or she may deem necessary for the Programme. (2) All staff to be deployed for the Programme shall have requisite knowledge and experience in the management and treatment of Sickle Cell Disorders to be members of the Programme.

7. Functions of the Programme Focal Person. The Programme Focal Person shall: (a) manage and superintend the affairs of the Programme; (b) head the Secretariat of the Programme; (c) provide leadership and advocacy for the prevention, treatment and control of Sickle Cell Disorder in the State; (d) provide inter-governmental and multi-sectoral coordination for the Programme; (e) facilitate the formation and development of national and international partnerships and collaboration for the purpose of enhancing the State’s control initiatives on Sickle Cell Disorder; (f) review, from time to time, the extent of the implementation on the prevention, treatment and control of Sickle Cell Disorder by the Programme; (g) promote research within and outside the Treatment Centres; (h) keep safe custody of all records of the Centres; (i) prepare and present the annual and other reports on the progress of work at the Centres and on the expenditures and liabilities of the Centres; (j) carry out any other functions assigned to him or her by the Commissioner regarding the prevention and control of Sickle Cell Disorder.

8. Allowances for Staff of the Programme. The Programme Focal Person and other members of the Programme shall be entitled to allowances as may be approved by the Governor.

9. Treatment Centres. (1) There stand established for the Programme, Sickle Cell Treatment Centres in the State. (2) The Treatment Centres shall be categorised as follows: (a) Primary Treatment Centres; (b) Secondary Treatment Centres; and (c) Tertiary Treatment Centres.

10. Supervision of the Treatment Centres/Chief Medical Director to render monthly reports of activities of the Treatment Centres. (1) The Treatment Centres shall be under the supervision of the Chief Medical Director or Medical Director of the Hospital/Health Facility in which a Treatment Centre is located. (2) The Chief Medical Director/Medical Director in charge of the Hospital/Health Facility in which a Treatment Centre is located or any person delegated by him or her shall be responsible for rendering the monthly reports of the activities of the Treatment Centres to the Programme Focal Person pursuant to section 13(1) of this Law.

11. Services of the Treatment Centres. The Treatment Centres shall offer the following services: (1) Primary Treatment Centres to offer Genotype testing, counselling and Primary Level Care to Sickle Cell Disorder Patients. (2) Secondary Treatment Centres to offer Secondary LevelCare to Sickle Cell Disorder Patients. (3) Tertiary Treatment Centre shall be a referral Centre for all Primary and Secondary Treatment Centres in the State.

12. Functions of the Tertiary Treatment Centre. (1) In addition to the Services in subsection (3) of Section 11 the Tertiary Treatment Centre shall carry out the following functions: (a) provide leadership in Sickle Cell Disorder research, control, prevention and treatment; (b) guide scientific improvements to Sickle Cell Disorder research, management, treatment and care; (c) conduct early screening for detection of Sickle Cell Disorder in partnership with hospitals and health Centres in the State; (d) conduct surveillance and maintain data on the prevalence and distribution of Sickle Cell Disorder and its associated health outcomes, complications and treatment; (e) coordinate and liaise between the wide range of groups and healthcare providers with an interest in Sickle Cell Disorder to develop programme for the education of the populace regarding the nature and inheritance of sickle cell traits and sickle cell disease; (f) make recommendations to Government about sickle cell policies and priorities; (g) assist with the implementation of Government policies and programmes on sickle cell research, treatment and advocacy; (h) provide financial assistance from the budgetary allocations for research, treatment and implementation of policies and programmes. (2) The Tertiary Treatment Centre may carry out such other activities as are necessary or expedient for the full discharge of any of the functions of the Programme.

13. Treatment Centres Monthly Reports. (1) The Treatment Centres shall render monthly written reports of their activities concerning sickle cell prevention and treatment to the Programme Focal Person. (2) The Programme Focal Person shall upon receipt of the reports from the Treatment Centres transmit the reports to the Commissioner.

14. Standard Genotype Screening Policy. (1) From the commencement of this Law, all hospitals and health facilities in the State shall operate a standard policy on genotype screening for new born babies. (2) Pursuant to sub-section (1) of this section, hospitals and health facilities in the State are empowered to collect blood samples from new born babies in that hospital or facility for the purpose of carrying out genotype screening, provided that a written parental consent is first obtained. [Hospitals/ Health Facilities empowered to take blood samples for Genotype Screening.] (3) Where a Primary or Secondary Treatment Centre lacks necessary equipment to carry out genotype screening, the blood samples collected from new born babies by the Primary or Secondary Treatment Centres shall be transmitted to the Tertiary Treatment Centre capable of conducting the genotype screening. (4) Pursuant to the standard genotype screening policy operational in the State and in line with World Health Organization Programme on eradication of Sickle Cell Disease, all intending couples in the State shall be offered counseling aimed at educating them on the advantages of pre-marital genotype screening. [Counselling for Intending Couple on Genotype Screening Policy.] (5) The Programme Focal Person shall collaborate with religious bodies and marriage registries to provide counseling for intending couples to achieve compliance with the standard genotype screening policy operational in the State. [Programme Focal Person to Collaborate with Religious Centres/ Marriage Registries.]

15. Fee for Genotype Screening. All genotype screening shall be carried out at a fee to be prescribed by the Ministry, which may be reviewed from time to time.

16. Assets of Existing Sickle Cell Disease Centres in the State. (1) All assets of Existing Centres designated for the management of Sickie Cell Disorders in the State before the commencement of this Law are hereby preserved and shall not be converted for any other purpose other than for the treatment and management of sickle cell disease. (2) All equipment provided for Existing Sickle Cell Centres shall not be removed or transferred. to any other facility or be applied to any other use other than for the purpose of management and treatment of sickle cell disease.

17. Funds of the Programme. (1) There shall be established for the Programrme a Vote of Charge (Sickle Cell Disorder Management Vote of Charge) in the Ministry from which all administrative costs and other activities of the Programme shall be funded. (2) Without prejudice to subsection (1) of this section, the Ministry shall have power to open a dedicated bank account for the Programme, through which the Programme may receive: (a) any take-off grants from the State Government; (b) other subventions approved by the State Government for the Programme; (c) all aids, gifts, grants or loans (however described) received from the State Government, or any institution, any government, including the Federal Government of Nigeria, Non-Governmental Organization (both local and international Organization), other donor agencies, partners and the private sector. Provided that such grants are not intended for the purpose contrary to the functions of the Programme; (d) all other sums, as may from time to time, become payable to or vested in the Programme regarding any matter incidental to its functions; and (e) all other funds and assets which may accrue to the Programme from sources approved by the State Government.

18. Power to accept Gifts. (1) The Programme may accept gifts of tand, money, or other property in kind on such terms and conditions, if any, as may be specified by the person or organisation making the gift, provided that the terms and conditions of the gifts are not contrary to or inconsistent with the objectives and functions of the Programme. (2) Any monetary gift under subsection (1) of this section shall be deposited in the account described in section 18(2) of this Law.

19. Annual Budget for the Programme. Before the end of each financial year, or at such other time as may be required by the Commissioner, the Programme Focal Person shall present for scrutiny and acceptance in whole or in part by the Commissioner, estimates. Of the revenue and expenditures for the ensuing financial year and the accepted estimates shall form part of the Annual Budget of the Ministry.

20. Annual Financial Reports. On/or before 31st January of every year, or at such other time as may be required by the Commissioner, the Programme Focal Person shall present the Financial reports of the Programme for the preceding financial year for his or her scrutiny.

21. Power of State Auditor General to access the Programme's Account. The Auditor General of the State shall have the right to access the books, accounts and vouchers of the Programme and shall be entitled to such information and explanation as may be deemed necessary for the audit of the Programmes account.