People with sickle cell illness have ‘disabilities’; let us acknowledge this first. In Nigeria, an estimated four million people suffer with sickle cell disease (SCD), a genetic blood illness for which there is now no therapy. However, just because there is no cure for sickle cell disease does not mean that people with it are unable to participate in most activities. They can, if they have the necessary information, guidance, and support.

So, why are so many Nigerians silently suffering and dying from this treatable disease? There are two key causes: a lack of socioeconomic support and limited access to early-onset medical care.
We can begin to improve the lives of Nigerians with sickle cell disease by breaking the taboo surrounding the term “disability.” If we classify this disease as a disability, as many developed countries already do, people with the blood disorder could benefit from state-established social protection programs, disability-inclusive employment, and subsidized health care through the National Health Insurance Scheme’s Physically Challenged Persons Social Health Insurance Programme (PCPSHIP).

Increasing access to these programs can benefit and save lives. According to the World Health Organization, 70% of sickle cell-related fatalities and sequelae can be avoided with cost-effective interventions such as comprehensive health and behavioral care. So, why are people living with sickle cell disease refusing this classification?

Nigerians’ prejudice against those with disabilities is stifling the sickle cell community. By changing our perspective of the term, we can help the more than 4 million Nigerians who suffer with the ailment. Nigeria signed the Discrimination against Persons with Disabilities (Prohibition) Act 2019 12 years after ratifying the United Nations Convention on the Rights of People with Disabilities in 2007. In the meanwhile, disabled people face bullying, stigma, and exclusion.

In recent interactions with several sickle cell illness support groups, I discovered that the term “disability” was instantly seen as derogatory not because they thought it was, but rather because of the bias associated with the word in our community.

This is one of the primary reasons why the sickle cell disease community refuses to participate in the disability inclusion framework. Further discussion revealed that as a result of this view, they have not been exposed to the true benefits.

The definition of disability, on the other hand, is simply a “physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities.”

According to the Nigeria Centre for Biotechnology Information (NCBI), sickle cell disease is a neglected chronic disease of growing worldwide importance, classed as a handicap under haematology disorders in developed countries.

Disability support must include socioeconomic assistance, health financing, education, and work opportunities for patients.

A study conducted by a hospital in Lagos offered supportive evidence on the cost consequences for children with sickle cell disease who were granted access to temporary health insurance coverage. Data show that 45.5% of households earning more than N150,000 ($417) per month reported a significant improvement in their health. They discovered a fresh option for patients and their siblings to pursue education and employment.

Unfortunately, sickle cell patients in Nigeria do not yet have access to this health insurance disability benefit. Instead, individuals are enticed to purchase exorbitantly expensive insurance that is unsuitable for their specific need. Senator Sam Egwu’s 2015 Bill on the prevention, control, and management of sickle cell disease is the most widely reviewed and up-to-date paper on the subject. It was presented to the two legislative branches and recently passed its third reading. The Coalition of SCD NGOs praised this law for its new ability to advocate for rules to avoid sickle cell disease, but it faced significant opposition because it did not address the concerns of millions of patients who are already living with the affliction.

The bill’s approach failed to address the requirements of people living with the condition and exposed our government’s contempt for providing care to vulnerable groups. As president of the Sickle Cell Aid Foundation, I opposed this law. Along with the coalition, we made suggestions that emphasized the importance of having disability assistance in the legal framework in order to provide patients with socioeconomic support, health finance, education, and career opportunities.

Should stakeholders remain neutral when it comes to disability inclusion?

One could argue that sickle cell disease does not originally show physical handicap and so should not be classified as a disability. However, based on usual care, a sickle cell patient will experience unavoidable crises throughout their lives. Further difficulties will include mental health issues as well as physical limitations caused by necrosis of various bodily parts, which will limit movement and ease of living.

Can you image 4 million sickle cell disease fighters in Nigeria having access to life-saving resources just because they recognize the value of pushing for inclusion and accepting the term “disability”? Vulnerable groups must understand the resources that may be made available to them, have a safe environment to seek for assistance, and accept assistance when it is offered.

Given the grim SCD numbers, our government must take a visible leadership role in the advocacy, practice, and awareness of inclusive policies and bills addressing SCD and other health disorders that may lack legislative representation.

Beyond government action, the public must create caring and inclusive environments and be nice to those with health concerns.

Finally, much as HIV/AIDS knowledge and education have progressed through open conversations, sickle cell disease patients and support organizations must advocate for inclusion through campaigns and policy engagements that keep communication at the forefront of this national issue.

People with sickle cell disease can live a full life and participate in most of the activities that others do if they have the necessary information, aid, and support.