…as stakeholders call for urgent legislation to reduce high in SCD
By Elizabeth Osayande
As the world sets to mark 2020 world sickle cell disorder, SCD, day, a coalition of non-governmental organisations, NGOs, in Nigeria, has decried the alarming rate of cases of SCD in the country.
They also highlighted ways in which the country can improve the living conditions of people living with SCD, with regards to enacting laws that will address the conditions with respect to human rights among several measures.
The United Nations earmarked June 19 annually as ‘World Sickle Cell Day’ to recognise SCD as a public health problem and ‘one of the world’s foremost genetic disorders’.
Nigeria is believed to be the SCD capital of the world, currently accounting for 50 percent of the 300,000 global SCD births annually and with an estimated annual population growth rate of 3.25 percent.
The coalition of SCD NGOs comprised Sickle Cell Foundation Nigeria, SCFN; Sickle Cell Advocacy and Management Initiative, SAMI; Sickle Cell Aid Foundation, SCAF, Crimsonbow Sickle Cell Initiative and Genotype Foundation.
Others are Tony May Foundation, Noah’s Ark for Sickle Cell Foundation, Nirvana Sickle Cell Initiative, Avo Eri Health Foundation, Dabma Sickle Cell Foundation, Couple and Kids Sickle Cell Initiative, Soulage Foundation, and Disability and Sickle Cell Organisation in Nigeria amongst others.
According to a statement by the coalition, despite creating awareness since 2016, there has been a steady rise in the burden of the disorder as well as the poor standard of health care for people with the disorder.
The NGOs said the success in awareness is undercut by the challenges in healthcare delivery for patients where data shows that only 50 percent of children with SCD do not live past the age of 10 in Nigeria.
According to them, an example is the challenge in accessing bone marrow transplants (BMT).
Speaking on activities to mark this year’s SCD international day, they explained that they will use the day to “assess the state of sickle cell in Nigeria, take stock of progress and chart the course to surmount the range of challenges we face.”
In continuation of other critical issues hindering SCD awareness and management in Nigeria, the coalition said: “Rife bureaucracy at government agencies stifles interactions with stakeholders and prevents synergy with government objectives.”
Other programmes the coalition does are the annual red umbrella walk, educational seminars and interactive games that celebrate the vibrancy of the SCD community.
However, due to restrictions from the COVID-19 pandemic, such activities cannot take place this year.