World Sickle Cell Day: President Tinubu, please pay attention to our plight

First, I wish to extend my warmest congratulations to President Bola Ahmed Tinubu on his successful inauguration as Nigeria’s new president.

Mr President, I write to you today to discuss a matter of great importance to our nation. Nigeria has one of the highest rates of sickle cell disease (SCD) in the world with over 10 million people mostly children living with the condition and even larger population living with the sickle cell trait.

SCD is an inherited blood disorder that affects the shape of red blood cells. These cells become crescent shaped and get stuck in small blood vessels, which can cause severe pain and damage to organs. SCD can also lead to other serious health problems including stroke, infections and organ damage. It is a chronic condition that requires lifelong management and expensive treatment as there is no known affordable cure.

SCD affects nearly 150,000 babies born in Nigeria annually, with the vast majority of them not surviving till five years of age.

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The burden of SCD on children in Nigeria is immense, manifested in the constant pain, frequent hospital visits, financial strain, developmental delays, and a shortened lifespan.

The high cost of treatment

SCD requires lifelong management, and the costs associated with SCD management pose significant financial challenges to families.

The high cost of treating SCD in Nigeria is evident in the need for frequent blood transfusions, regular hospital visits, and the use of various drugs and supportive therapies.

The cost of blood transfusions, for instance, is particularly high due to the risk of transmitting infections, inadequate regulation, and a shortage of blood donors.

It is not uncommon for a single blood transfusion session to cost between N20,000 to N50,000. The cost of medical care, including the cost of drugs and medical consultations, further adds to the financial burden for families.

Genotype testing related discrimination

Genotype testing, which identifies carriers of the sickle cell trait, has become increasingly popular in Nigeria over the past few years.

Genotype testing is essential for early detection, education, and prevention of SCD.

However, the emphasis on testing, without adequate improvement in the provision of care for sickle cell patients, has led to unintended consequences, including discrimination against individuals carrying the sickle cell trait.

These individuals are often stigmatised, and many face discrimination in employment, education, and access to health services.

Need for research investment and free drugs

SCD imposes a significant burden on Nigeria, affecting not only the health of the population but also the economic and social well-being of the country.

Despite the immense burden of this disease and the lack of effective treatments, there has been limited investment in research to find a cure for SCD.

Mr President, I believe that investment in research is essential to developing new therapies and improving the quality of life for patients.

For instance, gene therapy research holds promise for developing a treatment that would correct the genetic defect that leads to SCD.

Similarly, bone marrow transplantation, which replaces the patient’s bone marrow with a healthy donor’s bone marrow, has been effective in curing SCD in some patients.

While these therapies are still experimental, investing in research is critical for advancing this research and providing hope for people living with SCD in Nigeria.

Mr President, there is need for a collaboration between the federal and state governments to assist patients with free or heavily subsidised routine drugs such as hydroxyurea, folic acid and proguanil hydrochloride tablets which are known to improve the quality of life of SCD patients.

In addition, the federal and state governments as well as the National Assembly should set up an agency like the National Agency for the Control of Aids (NACA) in order to coordinate efforts to address the burden of SCD on the country with emphasis on caring for patients already suffering from the disorder.

Sir, it is my firm belief that as a listening and compassionate president, your intervention in this problem will go a long way in resolving some of our dire challenges.

Dawud Nazifi wrote from Kano