Sickle cell disease (SCD) is one of the most prevalent genetic blood disorders affecting millions globally, with a significant impact on Nigeria. Known for its painful episodes and severe health complications, SCD requires continuous healthcare support and advances in medical treatment to manage the disease effectively.
Nigeria is home to one of the highest populations of people with sickle cell disease, accounting for approximately?150,000?of the estimated?300,000?children born annually with SCD worldwide. The genetic prevalence of the sickle cell trait (HbAS) is also widespread in Nigeria, affecting nearly 25% of the population. Despite this high burden, several challenges hinder effective care and treatment access.
Some of the Burdens of Sickle Cell Disease
- The social stigma: “That girl is a sickle cell patient”, “that boy is always in and out of the hospital”. They are constantly labelled, separated from the vast majority. Should we get into the fact that family and friends, and even random onlookers are always holding their breath around them, silently waiting, scared because they believe they can go to sleep at any time? Social stigma remains a significant issue. Many individuals with SCD face discrimination, which can lead to social isolation, a lack of support networks, and psychological stress. This stigma is further complicated by cultural misconceptions about the disease, making it difficult for patients to navigate their healthcare journey openly.
- The pain: the aggravating, excruciating pain they have to go through all the time. The almost perpetual use of pain medications. The addiction that comes with that. The fact that the slightest trigger can lead to crisis, and that this can eventually morph into a more severe complication.
- The financial burden: the pockets of these warriors, their family, and their loved ones suffer terribly because of the disease. Constant hospital visits, treatments, and preventive measures, take up a huge amount of earnings.
- The emotional torture: one can only imagine the toll it takes on one to see one’s loved one in so much pain and not have the ability to do anything about it.
And then, due to the healthcare system in Nigeria, other challenges faced are:
- Limited Access to Healthcare and Treatment Facilities: many Nigerians with SCD, particularly those in rural areas, face restricted access to comprehensive healthcare facilities equipped to manage the disease. High-quality sickle cell care often requires multidisciplinary support—ranging from haematology, pain management, and psychological services—which may be unavailable or inaccessible for many Nigerians.
- Shortage of Trained Specialists: Nigeria faces a shortage of haematologists and other specialists required to provide dedicated SCD care. This gap in specialized knowledge contributes to delayed diagnoses and suboptimal care, particularly in remote areas, where healthcare providers may not have the expertise to manage complications associated with the disease effectively.
Advances in Sickle Cell Treatment: Opportunities for Nigerian Patients Despite these challenges, several advancements in SCD treatment offer hope for Nigerian patients:
- Hydroxyurea Therapy: hydroxyurea, a relatively accessible drug, has proven effective in reducing the frequency of painful crises and other complications associated with SCD. Increased awareness and affordability of this therapy in Nigeria could significantly improve patient outcomes, although efforts must be made to ensure it’s widely available.
- Bone Marrow and Stem Cell Transplants: advances in bone marrow and stem cell transplants have provided a curative option for some patients. These treatments, while complex and expensive, are becoming more viable as awareness and investment in specialized medical facilities grow. Though this treatment option has tremendous and even curative benefits, can those who really need it afford it with the current economic situation of the country?
- Increased Support and Advocacy: community advocacy and support are critical for transforming SCD care in Nigeria. Organizations like the Sickle Cell Foundation Nigeria have made significant strides in raising awareness and supporting patients. Continued efforts to promote SCD education, destigmatize the condition, and provide funding for research and treatment will be essential for long-term progress.
Above all, the most effective and curative way of significantly reducing the burden of sickle cell disease in Nigeria is prevention. The saying ‘prevention is better than cure” remains true. This is a topic that can never be overemphasized.
Health education regarding genotype compatibility should be given whenever the opportunity presents itself. Genetic testing and counselling should be mandated, as well.
This is a call for every one of us to take action. Support that loved one of yours who lives with the disease, help in every way possible, and also advocate for prevention.
To all our warriors, we are strongly behind you, cheering you every step of the way!