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Why sickle cell is neglected in Nigeria, by CrimsonBow Initiative

Sickle shaped red blood cells… PHOTO: University of California, Berkeley, United States (U.S.)

The co-founder, CrimsonBow Sickle Cell Initiative, a Non Governmental Organisation (NGO), Mr. Greg Emuze, has described genetic blood condition as not lucrative in the health sector; hence little attention is paid to it.

According to him, big pharmaceutical companies would rather focus their energy and resources to conditions like leukemia, cancer, renal and cardio vascular issues which are broad and general because they are sure to make their money.

Emuze who said this at the phase IV of the organisation’s ‘Keep a Warrior Warm’ project in Lagos noted that because it is a disease of the black people, the market for sickle cell disease (SCD) drugs is limited.

He stated that if a pharmaceutical company invests about $2b on research for drugs on SCD, chances are very high they would lose their money because most people affected with the condition can’t afford expensive medications.

Most people according to him don’t even have the funds to test before marriages or even know about it so that education gap creates the poverty gap and the health issues.

With the exception of few cheap and affordable drugs strictly for the condition, the CrimsonBow boss said little has been done to develop drugs for SCD management, and drugs like hydroxyurea, which is used to manage it wasn’t solely for the condition rather for the treatment of leukemia, cancer and other conditions.

He expressed his dissatisfaction saying despite the fact that Nigeria has the highest burden of SCD in the world; little is being done by government as they are over-reliant on foreign aids.

“We can’t create those solutions for our people because we are waiting for the Western world to fix it and bring it to us, but let’s remember it’s not their problem, so why should they spend time and money on it.”

The founder of the organisation, Timileyin Edwins noted that the phase four of the awareness project which had reached almost 500 diverse audiences at the Ojudu Local Government Area (LGA) witnessed 180 people tested free for their genotypes.

She acknowledged that government doesn’t have enough funds to push this course, but they should encourage NGOs in the field by partnering.

“They can provide us with venues and medical personals to help with our outreaches just as we are partnering with various LGA in Lagos.”

Emuze also appealed to government to make a move by starting with data gathering and creation of dedicated clinics for SCD sufferers with haematologists and genetic nurses because a lot of doctors are ignorant about the condition.

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