An NGO, the Sickle Cell Advocacy and Management Initiative (SAMI), has advocated a mandatory genetic counselling for intending couples to reduce the prevalence of sickle cell disorders in society.

Abayomi Oyelami, the communication officer for the initiative, made the call at the Toyin Adesola Leadership Lecture (TALL) held at the Sickle Cell Lagos office in LUTH on Friday.

The lecture was themed: “Voices, Victory and Vision: A Legacy of Health Advocacy, Celebrating Toyin Adesola at 60 and Sickle Cell Awareness Month”.

Genetic counselling is the process of investigating individuals and families affected by or at risk of genetic disorders to help them understand and adapt to the medical, psychological and familial implications of genetic contributions to disease.

Mr Oyelami, who is living with the disorder, explained that this would enable health professionals to advise prospective couples concerning the risks of genetic disorders in a future child.

He emphasised that intending couples could also seek genetic counselling, especially if there was a family history of genetic conditions, infertility or pregnancy loss.

According to him, this allows them to explore options such as assisted reproduction with pre-implantation genetic diagnosis (PGD), and make informed reproductive decisions in a supportive environment.

The spokesman said the initiative proposes a public health policy requiring newborns’ genotype testing shortly after birth to enable early detection and management of genetic disorders, particularly sickle cell disease.

“We are using the founder of this initiative, Toyin Adesola to raise the voice for the people who will naturally not speak.

“She has been a champion for the people living with sickle cell so the initiative has come up with the best solutions for the people living with chronic health conditions.

“What we are advocating is for people to make informed decisions so it won’t be like the generation of our parents that are ignorant because of a lack of advocacy and proper health care centres to carry out tests.”

He emphasised that couples should not wait until a few months before their wedding to know their genotype compatibility, noting that they might decide not to get married if they both carry the sickle cell trait.

Similarly, Michael Adeseye, a paediatric haematologist and oncologist at Lagos University Teaching Hospital (LUTH), urged the federal and state governments to enrol children living with sickle cell into health insurance to enhance their access to healthcare.

Mr Adeseye further called for access to affordable medicines to reduce the financial burden on families.

“The federal government can legislate to ensure that laboratories turn out the right results for those who go for the genotype and sickle cell screening.”

He lamented that about 40 per cent of people still get wrong genotype results from laboratories.

Also, Nonye Nweke, said the founder established the foundation with a vision to ensure sickle cell warriors and their families live healthy and productive lives.

Mr Nweke, who is also a sickle cell warrior, said hundreds of families had benefited from the foundation’s support and advocacy since its establishment over 15 years ago.

(NAN)