NGOs Laud NASS Over Sickle Cell Centres Bill, Bankroll Free Clinic For 400 Warriors

The CrimsonBow Sickle Cell Initiative and Rabiu Olowo Foundation have applauded the Senate for prioritising the welfare of persons living with Sickle Cell Disorder (SCD) through the Sickle Cell Disorder Research and Therapy Centres (Establishment) Bill, 2025.

Both foundations gave the commendations End-of-the-Year 2025 Free Clinic for about 400 carriers organised by the CrimsonBow Sickle Cell Initiative and sponsored by the Rabiu Olowo Foundation on Saturday in Lagos.

Recalled that the Senate had taken a decisive step toward improving care for patients by passing for second reading a bill to establish Sickle Cell Disorder (SCD) Research and Therapy Centres across the country.

The proposed legislation seeks to drastically cut Nigeria’s sickle cell mortality rate by creating one specialised centre in each of the six geo-political zones and the Federal Capital Territory.

The centres will serve as hubs for diagnosis, treatment, rehabilitation, research and public education.

Speaking, the Founder and Chief Executive Officer of CrimsonBow, Ms Timi Edwin, commended the Federal Government for shifting attention to millions of Nigerian households bearing huge burdens of sickle cell anaemia, said the step aligned with the initiative’s mission.

Commending the sponsor of the bill, Sen. Sunday Katung, and the Senate Committee on Health (Secondary and Tertiary), Edwin said the initiative would provide a structured and sustainable response to one of the most common inherited disorders.

“We would like to commend the Federal Government through the Senate for deeming it fit to alleviate the suffering of carriers of sickle cell anaemia in this country.

“Pushing for this bill has brought a lot of joy to our hearts as carriers of sickle cell disorder.

“This is exciting. It is commendable that Nigeria has started showing commitment to strengthening SCD. We want this bill to be passed and implemented as soon as possible.

“Having a special clinic for patients, with the right consultants, medication and everything a patient with sickle cell will need, is exciting,” Edwin said.

She called on President Bola Tinubu-led Federal Government to pump more money into the health sector and non-communicable diseases to reduce mortality rates in the country.

According to her, the bill is visionary, timely and holds tremendous potential to transform care, research and outcomes for millions of Nigerians.

Edwin, however, added that the coalition of sickle cell NGOs had forwarded observations and recommendations on the bill to the Senate to strengthen implementation, ensure sustainability and guarantee maximum impact.

On the free clinic, the founder said the initiative provided general health talks, medical consultations, medication, vaccination, routine tests, genotype testing and counselling for no fewer than 400 persons living with sickle cell in Lagos.

“Our clinics are monthly. We have done 10 clinics this year and have impacted more than 5,000 people living with sickle cell who have benefited from our services.

“We want support from well-meaning Nigerians and also want the government to increase the budget for healthcare across the country,” Edwin said.

Speaking, Mr George Oche, General Manager, Rabiu Olowo Foundation, said the foundation’s intervention in sickle cell care was driven by the lived experience of its founder and Executive Secretary and Chief Executive Officer of the Financial Reporting Council of Nigeria.

Oche, representing the founder, said both he and the founder live with sickle cell disease, adding that the foundation, built on three key pillars—health (sickle cell), education and community services—was committed to supporting patients and affected communities.

Oche described living with sickle cell disease as challenging but purposeful, noting that his condition strengthens his resolve to make impact through advocacy, care and community support.

He said the foundation runs initiatives including free genotype testing, support for warriors and outreach programmes aimed at improving the quality of life of patients.

According to him, the foundation’s 10K GenoTest initiative targets 10,000 youths with free testing and awareness to help reduce Nigeria’s high sickle cell birth prevalence.

Counselling patients not to give up on life, Dr Pamela Ajayi, Chairman, Bridge Clinic and host of Doctors on Air, said bone marrow transplant “is no longer something to be avoided and can now be done in Nigeria.”

Ajayi also emphasised the importance of pre-marital and pre-implantation genetic testing, saying there are important new treatments and initiatives now available in Nigeria.

According to her, since these initiatives are expensive, there is a need for government to establish special clinics and dedicated funds for SCD carriers.

Dr Ayodele Renner, a consultant paediatrician and child health advocate, described people living with leukaemia as “warriors,” praising their courage and resilience despite daily pain, lifelong medication and emotional challenges.

He urged Nigerians to prioritise genotype testing, warning that many adults marry without knowing their status, increasing the risk of sickle cell disease among children.

Renner called for routine genotype and blood group testing for all children at one year, noting that late diagnosis often leads to severe complications, including anaemia and kidney failure.

He advised diagnosed patients to keep clinic appointments, take prescribed drugs regularly and avoid self-medication, stressing that early hospital care improves survival and quality of life.

Renner said governments should expand health insurance, subsidise drugs like Hydroxyurea, support blood services and strengthen sickle cell clinics to reduce financial burdens on affected families.

Beneficiaries, including 11-year-old Hassanat Adewale, commended the commitment of the CrimsonBow initiative to easing the suffering of patients with SCD.