Groups of Sickle Cell Initiatives and surviving patients have re-echoed the importance of early genotype screening for Nigeria newborns, in order to boost life expectancy of individuals with the sickle cell disease.
The Sickle Cell Initiatives on Saturday in Lagos State tasks the Federal and State Governments on the need to enact a law making sickle cell genotype screening mandatory for newborns and all citizens.
The groups Crimsonbow Sickle Cell Initiative and Sickle Cell Advocacy and Management Initiative jointly made the calls at the Sickle Cell Awareness Walk and Free Clinic for about 1,000 patients in Lagos.
The walk was organized by the groups in celebration of the 70th Birthday of their Patron and Sponsor, Mr. Wole Adeloye and to commemorate the 2025 World Sickle Cell Day.
Ms Timi Edwin, Founder and CEO of CrimsonBow Sickle Cell Initiative, in a chat with newsmen expressed worry over the increasing rate of the disease in Nigeria, said the way forward was for the government to make genotype screening compulsory.
Edwin, who noted that the government must be committed to saving future generations of the burdens of sickle cell, said however, that the disease was not a death sentence to carriers.
“Today, we have come together to celebrate our patron at 70 and also to mark world sickle cell day.
“We are marking these with a walk because it is important to create awareness of sickle cell disorder. Nigeria must act now to reduce the burden of sickle cell in the next generation.
“We need laws to support the eradication of sickle cell disease, especially compulsory newborns genotype testing, we want the government to pump more money into the health system,” Edwin said.
According to her, for the people living with sickle cells to be well taken care of, there is the need for a more vibrant health insurance and cheaper healthcare system.
“Let us move a bit from treatment of pains to all-round caring including nutrition and medications.
“We appeal to the government that we still have a lot of intricate pain points including service care, early diagnosis, infrastructure and others,” she added.
On the free clinic, Edwin said that both initiatives invited health consultants, qualified doctors, lab scientists, Psychologists to provide services and medications to patients.
Also speaking, Mrs Toyin Adesola, the Executive Director of Sickle Cell Advocacy and Management Initiative (SAMI) said that Nigeria had a lot of people living with sickle cell disorder, hence the need to make it health emergency for policy makers.
“The time to help multiple people living with sickle cell in Nigeria is now. Nigeria has a lot of them and it is really challenging. We need well meaning people to join the advocacy.
“Sickle cell is not a death sentence, I am going to be 60 this year, all the patients need is support, I had a lot of support and that kept me going.
“To other survivors like me I say stay strong, be resilient and have strong faith in God. Always look at the positive side of things,” Adesola said.
Sharing experiences, Mr. Wole Adeloye, a 70-year old sickle cell survivor and ardent sponsor of the groups, said that policy makers should make treatment and care less expensive for people with sickle cell.
Adeloye, who expressed gratitude to God for attaining 70 years with the disorder, stressed the need for quality healthcare, checkups, medications and health insurance.
He said: “New-born testing is the most important thing. We cannot also over stress the need for prophylactic penicillin for young patients.
“Another very important drug is hydroxyurea especially for children that goes through a lot of crisis.
“I however, find out that very few doctors knows how to prescribe hydroxyurea , and I would like to see that changing, as people with sickle cell when they get malaria it makes things a lot worse.
“So, they (patients) should also be on malaria prophylactic treatment. Pain management for sickle cell all that needs to improve.
Also our policy makers should make treatment and care less expensive for people with sickle cell.
Speaking, Mrs Christina Bakare, Project Coordinator, CrimsonBow Initiative, who noted that Nigeria has the highest number of sickle cell patients in Africa called on all stakeholders including the National and State Assemblies to save the country and future children.
Mrs Bola Deji- Adeyale, a 47-year old survivor, who called for more awareness and government involvement, disclosed that early signs of the disorder was different from one person to another.
“For a person like me, it was not discovered until I was 12, it came with a lot of pains. People often die because the testing are not done early enough,” she said.
Reeling out five of her doctor’s 10 commandments, Deji-Adeyale listed water drinking, daily medication, avoiding stress, extreme weather and knowing limits.
The groups also provided free medical consultations, tests and treatment for hundreds of patients.
The group embarked on the awareness walk to and fro from Rotary’s District 9110 at Ikeja GRA to Ikeja under-bridge, singing and dancing while also distributing flyers to create awareness of the need for genotype testing.
