The Senate has taken a major step towards addressing Nigeria’s heavy burden of sickle cell disorder (SCD) withthe second reading of a bill seeking to establish Sickle Cell Disorder Research and Therapy Centres in all six geo-political zones of the country and the Federal Capital Territory (FCT).

The bill, sponsored by Senator Sunday Marshall Katung (Kaduna South), aims to create institutional and legal frameworks for the establishment, management and operation of centres dedicated to the diagnosis, treatment, and research of the disease, which continues to claim thousands of lives annually.

Leading the debate on the general principles of the bill at plenary Wednesday, Senator Katung said his motivation for sponsoring the legislation stemmed from a deeply personal experience more than two decades ago when he witnessed the agony of a family grappling with the illness.

He said: “I once saw a child who had just been discharged after a crisis. His parents were arguing about whether to take him back to the hospital because they hadn’t paid the last bill.

“The child overheard them and said, ‘Mom, Dad, please allow me to die so that you can rest, and I too will rest’.

“That statement has stayed with me for 25 years. I promised myself that if I ever had the opportunity, I would bring this issue to public attention. That is why I introduced this bill.”

The proposed legislation seeks to establish research and therapy centres that would, in the first phase, operate in the six geopolitical zones, before eventual expansion to every local government area in the country.

According to Katung, Nigeria accounts for over 50 per cent of the 300,000 children worldwide who die annually from sickle cell complications before the age of five, making it the global epicentre of the disorder.

He said: “In Africa, Nigeria ranks first in the prevalence of sickle cell disease. The bill is meant to make treatment more accessible, improve early diagnosis, and raise awareness to prevent new cases, especially through public education on genetic compatibility before marriage.”

The senator emphasized that the centres would not only provide medical treatment but also serve as hubs for research, data collection, rehabilitation and community education.

He noted that while scientific breakthroughs have significantly improved outcomes for patients in developed countries, where more than 90 per cent of sufferers now live into adulthood, Nigeria continues to record high mortality due to poor diagnostic infrastructure and inadequate treatment facilities.

Katung lamented that many Nigerian families dealing with the condition face crushing financial burdens, forcing some to abandon hospital care.

“Treatment is expensive, and most families can’t afford it,” he said, adding that the proposed centres would help ease that challenge by providing affordable and accessible services.

The lawmaker also stressed the need for Nigeria to take ownership of finding a cure, noting that most research into the disease has been led by Western scientists, even though it primarily affects people of African descent.

“Sickle cell disorder is a black man’s disease, and because the white people are not sufferers, their efforts may not be as committed as ours should be.

“There was once a promising effort led by the late Professor Wonodi at the Pharmacology Centre, but it stalled after his death. This bill will help revive such research efforts,” he said.

The Sickle Cell Disorder Research and Therapy Centre Establishment Bill 2025, which comprises 27 clauses, provides for the setting up of a governing board, the appointment of professional and administrative staff, financial provisions, and operational guidelines for the centres.

The estimated cost of setting up the centres, according to Katung, is N4.7 billion, which will be borne by the Federal Government. However, he noted that the figure could be reviewed during the public hearing phase to ensure cost-effectiveness.

He revealed that some senators, including Senator Natasha Akpoti-Uduaghan (Kogi Central), had suggested that the proposed centres be attached to existing teaching hospitals to reduce startup costs and leverage existing infrastructure.

“All such recommendations will be considered at the public hearing to determine what works best for the country,” he said.

Katung appealed to his colleagues for bipartisan support, stressing that sickle cell disease is a national health crisis that transcends political, ethnic and religious boundaries.

“With humility, I urge all my distinguished colleagues to support this bill wholeheartedly. It is not just about healthcare, it is about giving hope to millions of Nigerian families living with this burden,” he said.

The Senate President, Godswill Akpabio, commended the sponsor for what he described as a “compassion-driven initiative” and referred the bill to the Senate Committee on Health (Secondary and Tertiary) for further legislative work.

Nigeria, according to medical experts, has the highest number of sickle cell cases globally, with an estimated 150,000 newborns affected each year. Public health advocates have long called for a coordinated national strategy to address the disease through early screening, public education and improved access to affordable treatment.

If passed into law, the Sickle Cell Disorder Research and Therapy Centre Act is expected to serve as a landmark framework for managing the disease in Nigeria, offering not only a lifeline for sufferers but also a renewed national commitment to scientific research and healthcare equity.

(This Day)