NGO Coalition Call for Inclusion of Patients, Sickle Cell Registry in New Senate Research, Therapy Centre Bill

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By Fatima Saka

Abuja, Nigeria — A coalition of sickle cell nongovernmental organizations on Monday urged the Senate Committee on Health (Secondary and Tertiary) to prioritise patient inclusion, sustainable funding, and the establishment of a national sickle cell registry as lawmakers held a one-day public hearing on the Sickle Cell Anaemia Disorder Research and Therapy Centre Establishment Bill, 2025 (SB 893).

Speaking at the hearing, Ms. Timi Edwin, Chairperson of the Coalition of Sickle Cell NGOs and CEO of CrimsonBow Sickle Cell Initiative, said the bill must reflect the voices and lived experiences of patients and advocates if it is to deliver meaningful impact.

Edwin stressed that the coalition’s core demand is the inclusion of patients and patient advocates in the governance and leadership structure of the proposed centres.

“Nothing should be made about us without us,” she said. “Doctors can give their perspective, but if patients are not represented, policies will be misguided. We have seen this over many years of sickle cell treatment in Nigeria.”

She said the coalition also wants clearer provisions to ensure the sustainability of the proposed regional centres, emphasizing the importance of collaboration with NGOs, private sector partners, and international bodies that can attract additional funding.

“Health is always one of the least-funded areas in the federal budget. NGOs have the capacity and trusted networks to bring in foreign funding that can support these centres,” she noted.

Coalition Calls for Establishment of National Sickle Cell Registry

Edwin called for the creation of a national sickle cell registry, warning that Nigeria still relies on data dating back over 25 years.

She said the registry would provide accurate information on the number of persons living with sickle cell, the different types and strains that exist, and the true patterns of complications and survival.

“We keep quoting that 150,000 babies are born annually with sickle cell, but sickle cell affects everyone differently. Without a registry, we cannot know how many types truly exist or how best to treat them,” she said.
“Jamaica’s registry transformed care. Imagine what a national registry could achieve in Nigeria.”

Advocacy for Research Into Traditional Medicine

Edwin also urged lawmakers to incorporate support for traditional medicine research, arguing that regulated herbal treatment could hold affordable solutions for millions.

She explained that while bone marrow transplant remains expensive and inaccessible to most Nigerians, exploring scientifically supported herbal alternatives could be transformative.

“There is a cure in our herbs — we just need research to identify which ones. If we find herbal treatments that work, they will be far cheaper and more accessible to people living with sickle cell,” she said.

She noted that traditional medicine remains unregulated, making collaboration with scientists essential.

“There are traditionalists who know these herbs. If we link them with scientists and enforce regulation, we can document the right herbs and dosages. That is how traditional knowledge will be preserved and transformed into real solutions,” she said.

Coalition Reaffirms Commitment to Improving Lives

Edwin concluded that the coalition’s engagements with the Senate aim to ensure that the bill delivers “transformative change” for people living with sickle cell disorder in Nigeria.

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“We are honoured to engage the Senate Committee to improve the lives of Nigerians affected by sickle cell disorder. With these collaborative recommendations, we remain confident that the Bill can achieve the transformative change it is designed for,” she said.

The Senate Committee is expected to review submissions from stakeholders before presenting its report to the full Senate for consideration.