Legal strategist and humanitarian, Ndey Mariam Jobe believes Nigeria is uniquely positioned to lead the global fight against sickle cell disease (SCD), given its large patient population and growing awareness. She opines that with the right policy investments and partnerships, Nigeria can become a global leader in sickle cell advocacy, treatment, and research.
In an exclusive interview with Pharmanewsonline, the Founder of the African Sickle Cell Support Foundation (ASCSF) disclosed her passion for sickle cell advocacy is deeply personal. “My only brother was born with sickle cell disease,” she shared. “Watching him battle a life-threatening condition shaped the foundation of my life’s work.” That experience led her to create ASCSF, which operates in both the United States and Africa to bridge gaps in care, education, and policy.
While she commends the Nigerian government for steps taken—such as awareness campaigns and the establishment of treatment centers—Jobe believes much more can be done. “Nigeria carries the highest burden of sickle cell globally. We need mandatory newborn screening, wider access to affordable medications like hydroxyurea, and increased investment in training healthcare professionals,” she said.
She also emphasised the need for stronger government commitment to public education and genetic counseling services. According to Jobe, empowering families with knowledge and resources is key to managing the disease long-term. She further called for Nigeria to champion innovations such as bone marrow transplants and gene therapies, asserting that the country has the talent and patient population to drive meaningful research.
As part of her advocacy, Jobe hosted a Stakeholders’ Dinner on June 20 in Lagos to commemorate World Sickle Cell Day. The event brought together sickle cell warriors, caregivers, healthcare professionals, biotech executives, and government officials, including spouses of several state governors.
“It wasn’t just a dinner—it was a movement,” she said. “We raised awareness, raised funds, and fostered critical dialogue. Proceeds went directly to the Sickle Cell Foundation Nigeria, which does incredible work under Dr Annette Akinsete’s leadership.”
Following that, a community awareness walk was held on 29 June. “The turnout was incredible. People came together—patients, families, students, and health professionals—to walk with purpose. We also hosted a voluntary blood donation drive, which was especially meaningful given how vital blood transfusions are to managing sickle cell crises,” she said.
Reflecting on advocacy efforts across continents, Jobe highlighted key cultural differences between Nigeria and countries like the U.S. “In the U.S., philanthropy and corporate social responsibility are deeply ingrained. In Nigeria, the passion is there, but economic constraints and systemic challenges often hinder widespread support,” she explained. However, she remains optimistic. “With more transparency, accountability, and inclusive platforms, Nigeria’s culture of giving will grow.”
Looking ahead, Jobe has bold plans for policy reform and healthcare accessibility. She is advocating for nationwide newborn screening policies and greater affordability of treatments like hydroxyurea through government subsidies. Her foundation also aims to deepen collaboration with pharmaceutical and biotech companies to improve access and drive innovation.
“My greatest expectation is real impact,” she said. “That means more people getting screened, more families educated, and more lives saved through early diagnosis and effective treatment.”
Jobe, who is also the founder of the eco-friendly baby care brand The Jaiye Company, views her advocacy as a lifelong mission that merges health equity, environmental sustainability, and systemic reform.
She concluded the interview with a message to sickle cell warriors around the world: “You are strong, you are brave, and your life has meaning. Stay consistent with your care, speak up for your needs, and know that a global community is fighting with you.”
Her message is clear: with collective will, systemic change, and shared purpose, the fight against sickle cell can be won—and Nigeria can lead the charge.
