Stakeholders on Sickle Cell anaemia have called for the incorporation of people living with the disorder in the formulation of the bill on Sickle Cell anaemia disorder currently before the National Assembly.
At a forum in Lagos tagged ‘Social Change and the Challenges of Sickle Cell Anaemia Disorder’, the participants urged the senators to also “revisit some of the points” contained in the bill.
“It is he that knows it that feels. Let stakeholders, parents, and those that have the challenge be involved in that bill,” said Emmanuel Ibekwe, chairman of Dabma Sickle Cell Foundation.
Doris Gbemiloye, founder of Genotype Foundation, said that the bill does not cover a lot of the challenges people with the disorder face.
“I’ve gone through the bill and I think it’s not solid enough to really address those issues,” said Mrs. Gbemiloye, whose foundation takes care of people with the disorder.
“A lot of areas need to be touched, and they need to involve a lot of nongovernmental organizations because he who knows where it pinches knows where it hurts,” she added.
The bill, sponsored by Ifeanyi Okowa (Delta North) and Usman Nenadi (Kaduna South), seeks to mandate the federal government to provide support for patients suffering from the disease by way of a treatment programme and other forms of support as well as encourage research for the next generation treatment.
Participants at the forum said that they are “uncomfortable” with some sections of the bill.
For instance, they want the term ‘victims’ – used loosely in the bill to refer to people living with Sickle Cell Anaemia – to be expunged from the bill.
“Those who have the disorder don’t like being called a victim,” said Mr. Ibekwe.
“It’s subjective in the first place. They don’t want to be referred to as ‘victims’, it creates defeat and some level of discomfort.”
Section 12 of the bill wants accredited hospitals and organizations to maintain a special section where intending couples would carry out blood genotype tests and receive counseling on the causes, effects, and prevention of the disease.
However, any person who goes into marriage contrary to the advice or counsel of any accredited hospital or clinic shall not be entitled to, at the expense of government, any medication, treatment, or drugs as a result of the occurrence or effect of the disorder.
The level of awareness of Sickle Cell anaemia should be heightened to forestall such cases, the participants said.
“People are getting more aware daily but the basic challenge is the rural area,” said Shwardun Jonathan, a medical doctor.
“A lot of people have died in the villages even without knowing they died from complications from Sickle Cell disease,” said Dr. Jonathan.
“That’s where we need to reach out to and give them that education,” he added.