Tuesday, 29 August 2017

Sicklers jubilate as ASHA holds public hearing on sickle cell law


By Okechukwu Onuegbu

The Association of Persons Living with Sickle Cell Disorder (APLSCD) has commended the Anambra State House of Assembly for slating August 30, 2017 as a date to hold public hearing on Sickle Cell Disease (Control and Eradication repeal bill, 2016).

The SCD bill, news48hrs.com learnt was aimed at amending the Anambra State 2002 Sickle Cell law which investigation shows that it was never implemented even though it was passed and assented to by Anambra State government led by Governor Chinwoke Mbadinuju.  

Expression satisfaction over the development, the APLSCD National Coordinator, Aisha Edward explained that the bill was meant to wipe sickle cell disorder in Anambra State and Nigeria in general.

Sponsored by Hon. Charles Ezeani, the member representing Anaocha 2 state constituency and fifteen others forbade religious bodies and registries from wedding any person or persons without verification of a qualified Sickle Cell Diseases Prevention (SCDP) certificate of the couple.

A copy of the bill made available to news48hrs.com describes qualified SCDP certificate as certificate for persons whose genotype reads AA and AA, AA and AS, SS and AA, adding that unqualified SCDP certificate means certificate of couples whose genotype reads AS and AS, SS and SS, SS and AS.  

It also indicates that as from commencement of the law, persons with unqualified SCDP shall not be allowed to marry as husband or wife, and no parent, guardian, person or group of persons shall give out a maiden in marriage without verification of a qualified SCDP certificate of the couple.

Similarly, it provides that any person who contravenes the provisions of the law shall be guilty of offence and liable to a term of 3 years imprisonment or both if convicted.

Similarly, it added that there shall be a subsided National Health Insurance Scheme on laboratory test and drugs for the sickle cell carriers with SCDP certificate in the state, as well as establishment of sickle cell clinic in all general hospitals and any other hospitals designated by the Anambra State Commissioner for Health.

The bill further provides that all sickle cell clinics shall be installed with necessary laboratory equipment, adding that each of them shall be responsible for conducting hemoglobin genotype test and any other test peculiar to sickle cell carriers, carry out routine checkup and treatment on carriers and issue each person upon whom a hemoglobin genotype test is carried out on with an SCDP certificate which shall be in the form shown in the schedule of the law.

In similar vein, it provided for constitution of staff of the sickle cell clinic which it says shall has a minimum of 3 out of the following medical practitioners namely; a hematologist, a physiologist, a chemical pathologist, a pediatrician, and other staff as may be needed.

The bill also states that no licensed or unlicensed orthodox medical practitioner shall treat any sickle cell carrier, adding that whoever contravenes the provisions shall be guilty of an offence and is liable on conviction to the fine of N200, 000 or imprisonment to a term of 3 years or both.

It also mandated the state commissioner for health to create rehabilitation center in Neuro-Psychiatric Hospital Nwafia for sickle cell carriers, and to include in the financial estimate of the ministry some budgetary allocation for implementation of modalities for eradication and control of sickle cell disease.

More-so, it shall empower the state Commissioner for health to set up as part of the ministry, a sickle cell disease monitoring committee and appoint a Chairman and a minimum of three medical practitioners to man it, including a representative of the association of people living with sickle cell, a hematologist, a physiologist, a chemical pathologist, a pediatrician and a clergy man.

The duties of this monitoring committee as enshrined in the bill were to liaise with the president general of each town union to conduct house to house investigation and enquiries in order to find out couples and children who have not undergone the genotype test; liaise with parents and guardians through the president general of each community in order to enforce the verification of SCDP certificate at the point of collection of dowries of their children or wards.

Others were to liaise with religious bodies and registry in order to enforce the verification of SCDP certificate of persons to be wedded and conduct public awareness programme in form of workshop and outreaches in order to enlighten the populace on ways of eradicating sickle cell disease.

It also stipulates that tenure of office of the members of the monitoring committee shall be for four years and their remuneration shall be determined by commissioner, even as they shall sit for not less than three times a year.

The monitoring committee also has power to recommend parents, guardian, person, group of persons, minister, registry officials who fails to verify SCDP certificate in the right circumstances to the state through the commissioner for persecution, as well as to apply for fund with the approval of the commissioner for effective performance of any of its functions.

Also, the Commissioner shall establish sickle cell skill acquisition centers within the three senatorial zones of Anambra for the purpose of training carriers to be self employed, while the High Court shall to the exclusion of any other court have original jurisdiction over matters specified under the law.



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