Stakeholders and advocacy groups have called for greater investment in healthcare, expanded access to treatment, increased research funding and stronger support systems for individuals living with sickle cell disorder in Nigeria.
The appeal was made during the Red Umbrella Walk, themed “From Awareness to Action: Building a Nation of Care,” organised in Lagos to mark the 2026 World Sickle Cell Day.
Speaking at the event, Chairperson of the Coalition of Sickle Cell NGOs, Ms Timi Edwin, said the annual advocacy walk was aimed at amplifying the voices of people affected by the condition and promoting better healthcare outcomes.
Edwin, who also serves as Chief Executive Officer of CrimsonBow Sickle Cell Initiative, said the theme underscored the urgent need for governments, private organisations and individuals to demonstrate greater commitment to the welfare of sickle cell patients.
She stressed the importance of collective action to eliminate stigma and ensure that people living with the disorder receive the care, recognition and support they deserve.
According to her, many individuals affected by sickle cell disorder continue to face neglect despite their contributions to society.
She urged authorities to channel more resources into healthcare services and scientific research, particularly studies aimed at finding lasting solutions to the disease rather than focusing solely on management.
Edwin noted that advances in healthcare have increased the life expectancy of many sickle cell patients, creating a need for further research into age-related health challenges experienced by long-term survivors.
She added that the impact of the disorder extends beyond physical pain, affecting patients emotionally, psychologically and financially, thereby requiring a comprehensive approach to care.
Also speaking, the coalition’s Vice-Chairperson and Founder of Noah’s Ark Foundation for Sickle Cell Nigeria, Ms Osasele Esangbodo, said the awareness campaign was intended to educate the public and inspire hope among affected individuals and families.
She emphasised that sickle cell disorder is manageable and should not be viewed as a death sentence.
Esangbodo dedicated the event to the memory of the coalition’s immediate past chairperson, Ms Toyin Adesola, who recently passed away at the age of 60.
She identified inadequate access to healthcare services and effective pain management as some of the major challenges confronting patients.
Executive Director of Genotype Foundation, Mrs Doris Gbemiloye, urged Nigerians to know their genotype before marriage, describing awareness and early diagnosis as vital tools in reducing the prevalence of the disorder.
She also advocated prenatal diagnosis for couples who carry the sickle cell trait.
The coalition’s Public Relations Officer, Mr Peter Osikoya, called for compulsory genotype testing for newborns and advocated wider adoption of advanced diagnostic methods such as High-Performance Liquid Chromatography (HPLC).
He expressed concern over cases of genotype misdiagnosis and urged stronger regulation of laboratories as well as continuous training for laboratory personnel.
Representing the Lagos State Ministry of Health, Mrs Khadijat Abdulkareem said the government was expanding genotype screening services and currently offers free newborn screening in more than 70 public health facilities across the state.
She encouraged parents to take advantage of the programme and advised residents to use only accredited laboratories for genotype testing.
Officials of the Lagos State Office for Disability Affairs (LASODA), Messrs Viavonu Folorunsho and Kelani Akeem, commended the advocacy efforts and pledged continued collaboration to improve healthcare and welfare support for affected individuals.
Participants at the event agreed that sustained awareness campaigns, improved healthcare services, stronger partnerships and increased investment in research remain critical to enhancing the quality of life of people living with sickle cell disorder across the country.
The advocacy campaign also featured calls for early genotype testing, newborn screening and an end to discrimination against individuals affected by the condition, while similar awareness walks were held simultaneously in several cities nationwide.