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Sickle Cell Bill: Open letter to Senate Committee on Health


Winifred Otokhina

SIR: The above bill sponsored by Senator Sam Egwu is in its second reading at the floor of the Senate. While we are grateful for his thoughtful consideration of the need to reduce the increasing burden of Sickle Cell Disorder, we believe that there are fundamental flaws which are inherent in the bill and we would highlight as follows:

The bill did not take cognizance of the fact that Nigeria operates a federal system which was the reason for the continued emphasis of the “Federal Ministry of Health” as the supervising ministry for the prevention, control and management of sickle cell disorder as provided in Section 3 of the said bill.

Section 4 of the Sickle Cell Anaemia bill provided for the accreditation of hospitals. We believe that accreditation of medical practitioners who have no specialist knowledge in the field of haematology or Sickle Cell Disorder management would further lead to complications in People living with Sickle Cell Disorder. The bill failed to address the recurring issue of genotype misdiagnosis by diagnostic centres or medical laboratories which is a major cause of the rising number of people living with Sickle Cell Disorder in Nigeria.

Furthermore, Section 5 of the bill provides that the Federal Ministry of Health may accredit local or foreign Non-Governmental Organizations. We respectfully submit that this is unnecessary and would lead to the usurpation of the functions of the Corporate Affairs Commission as provided in the Part F of the Companies and Allied Matters Act, 2020.

One other flaw in the bill which has caught our attention as well as that of majority of the stakeholders is Section 12 as it relates to special services to intending couples. Section 12 (2) of the bill states that where it is learnt or discovered through the blood test that the genotypes of the intending couple would render the child susceptible to the disease, the doctor or medical personnel shall advise the intending couples not to go into that marriage, reduce the counsel or advise into writing and record the full names and addresses of such intending couple. Section 12 (4) (a) of the bill further states that any person who goes contrary to such advise shall not be entitled to any medication, treatment or drugs as a result and 12 (4) (b) provides that no child born of such marriage shall be entitled to medical treatment.

We believe that the entirety of Section 12 of this bill is very discriminatory and is in gross violation of the Chapter IV of the 1999 Constitution which relates to fundamental rights particularly as relates to the right to life, right to association and the right to freedom from association as contained in Sections 33, 40 and 42 of the 1999 Constitution of the Federal Republic of Nigeria respectively.

It is also in contravention of Section 10 (2) of the Child’s Right Act 2004 which provides that no child shall be subject to any deprivation by reason of the circumstances of his birth.

We are of the firm view that intending couples should be allowed to make informed decision as provided by a genetic counsellor. Any law which compels people to make decisions is unconstitutional and therefore null and void.

The bill did not at any point address the management of people already living with the condition. People living with Sickle Cell Disorder are advocating for quality and affordable access to care. It might be of interest to know that people living with Sickle Cell Disorder are not eligible for Health Insurance under the NHIS Aact or under any health insurance scheme as we are classified under “Pre-existing conditions” and those with pre-existing conditions are entitled to limited benefits under any insurance policy. Therefore, most people living with this condition are made to pay out of pocket for their medical bills thereby plunging them into poverty.

Personal experience has shown that the average cost of an exchange blood transfusion in Nigeria is N500,000.  How many Nigerians can afford this?

Most people living with Sickle Cell Disorder who cannot pay their medical bills are either supported by very few Sickle Cell Disorder NGOs while majority are left to die needlessly.

There should be adequate training of haematologists and specialist health care workers in the area of Sickle Cell Disorder.

We therefore demand that the sections highlighted above be expunged and the bill amended to reflect the needs of People living with Sickle Cell Disorder as exemplified above.

  • Winifred Otokhina,

 TonyMay Foundation, Lagos.

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