By Onwe Wisdom | Pan Afric Reporters
At the Senate Committee on Health (Secondary & Tertiary) public hearing held at National Assembly today 24 November,2015, prominent sickle cell advocate and founder of the CrimsonBow Sickle Cell Initiative, Timi Edwin (Oluwatimileyin Edwin), called for a transformational approach to sickle cell policy in Nigeria, one that places patients at the heart of leadership, strengthens sustainability, and unlocks new pathways for treatment and research.
Edwin, who also serves as the Chairperson of the Coalition of Sickle Cell NGOs, said the group’s submission on the Sickle Cell Research and Management Bill seeks to correct longstanding gaps in representation, data, and treatment options.
“We are here today to make our submission… and the summary of our presentation is to ensure that there’s an inclusion of patients with sickle cell and patient advocates,” she told reporters.
She insisted that people living with the disorder must have a seat at the table.
“Nothing should be made about us without us,” Edwin emphasized. “The doctors can say their own perspective, but truthfully if the patients are not represented, a lot will be misguided and misrepresented and we can see that in the many years of sickle cell treatment in this country.”
Edwin stressed that sustainable governance structures must underpin the creation of new sickle cell centres. She criticized the historical oversight of NGOs and the private sector in national health initiatives.
“They always overlook the NGOs, the private sectors, the international bodies,” she noted. “We have the capacity to bring foreign funding through trusted sources… because health, to be honest, is always the least funded in the federal budget.”
According to her, partnering widely would ensure long-term support for research, diagnosis, and care.
One of her strongest demands was the establishment of a comprehensive national sickle cell registry.
“We keep saying that 150,000 babies are born annually with sickle cell, but sickle cell affects all of us differently,” she stated. She explained that the lack of accurate, updated data undermines treatment, planning, and research.
“Some people do not grow up to adult age, and for others it comes differently. Even within the SS type, there are many strains,” she said. “The registry will help us know how many types really exist in this country, and only then will we know how to treat each one.”
She pointed to global precedents. “This was established in Jamaica, and it brought lots of revelations. Just imagine if it is established in Nigeria,” she said, lamenting that current national data still relies on statistics from 1992 and 1993.
Edwin also urged policymakers to invest in exploring safe and regulated traditional remedies in addition to modern treatments.
“There is a cure in our herbs. We just have to find which herbs can cure sickle cell,” she said, adding that discoveries could make treatment far more affordable.
She highlighted the limitations of bone marrow transplantation. “How many people can afford it? And not everybody qualifies,” she pointed out, noting that many Nigerians with sickle cell remain excluded from curative options.
On how herbal research would be regulated, she explained that advocacy groups would work with established traditional medicine bodies:
“You’ll be shocked to know there is a person who sits with traditional herbs in Abuja. There’s an association of traditionalists. The reason many have lost hope in our traditional medicine is because it is unregulated.”
She added that with proper documentation and collaboration, traditional knowledge could be preserved and advanced scientifically. “Once we find these people and link them up with the scientists, the rest is history.”
As a sickle cell warrior herself, Edwin’s advocacy blends lived experience with policy engagement. Ending her remarks, she reiterated her commitment to championing inclusive, data-driven, and patient-centered reforms.
“My name is Timi Edwin. I’m the Chairperson of the Coalition of Sickle Cell NGOs of Nigeria,” she said, reaffirming the coalition’s united front in pushing for sweeping improvements to the sickle cell landscape in the country.
The Senate is expected to review the submissions as deliberations on the bill continue.
