By Elmer Aluge
People with sickle cell disease live with ‘disabilities’; let’s accept that first. An estimated four million people in Nigeria live with sickle cell disease (SCD), a genetic blood disorder with no imminent feasible cure. Yet, just because there is no feasible cure for sickle cell disease does not mean that people living with it cannot enjoy most of the activities other people do. They can if they have the correct information, assistance and support.
So why are so many Nigerians suffering silently and dying of this manageable disease? There are two primary reasons: lack of socio-economic support and poor access to early-onset medical care.
We can start to improve the lives of Nigerians with sickle cell by lifting the taboo over the term “disability.” If we classify this disease as a disability – as many developed nations already do – people with the blood disorder could access State-established social protection programmes, disability-inclusive employment, and subsidised health financing with the National Health Insurance Scheme through the Physically Challenged Persons Social Health Insurance Programme (PCPSHIP).
Increasing access to these programmes can improve and save lives. The World Health Organisation has recently estimated that 70% of sickle cell-related deaths and complications are preventable through cost-effective interventions that include comprehensive health and mental care.
So why are people living with sickle cell resisting this categorisation?
Nigerians’ bias against people with disabilities is holding back the sickle cell community. By shifting our perception of the term, we can have a positive impact on the more than 4 million Nigerians living with the disease. Since Nigeria ratified the United Nations Convention on the Rights of People with Disabilities in 2007, it has taken 12 years for the nation to sign the Discrimination against Persons with Disabilities (Prohibition) Act 2019. In the meantime, disabled groups are bullied, stigmatised and excluded.
In recent conversations with different sickle cell disease support group, I learned that the term “disability” was automatically viewed as offensive not because they thought it was but rather because of the bias associated with the word in our community. This is one of the major reasons the sickle cell disease community does not want to be included in the disability inclusion framework. Further conversation highlighted that because of this perception, they have not been sensitised to the actual benefits.
However, the definition of disability 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 increasing global importance and classified as a disability under haematology disorder in developed countries.
Disability support must incorporate socio-economic support, health financing, education and employment inclusion for patients.
A survey from a hospital in Lagos provided supporting data on the financial implications faced by children living with sickle cell disease when given access to temporary use of health insurance. Data shows that 45.5% of households earning above N150,000 ($417) monthly noted a considerable improvement in the quality of health. They found a renewed opportunity for patients and other siblings to pursue education and employment.
Unfortunately in Nigeria today, sickle cell patients cannot access this health insurance disability benefit. Instead they are persuaded to get ridiculously high premium insurance they cannot afford that is not tailored to their specific needs.
The 2015 Bill sponsored by Senator Sam Egwu on the prevention, control and management of sickle cell disease is the most stakeholder-reviewed and current document for sickle cell disease. It was presented before the two arms of legislation and has recently passed its third reading. The Coalition of SCD NGOs applauded this bill for its novel capacity to push for rules on preventing sickle cell disease, but it received major challenges because it did not address the needs of millions of patients already living with the disorder.
The bill’s approach did not meet the needs of individuals living with the condition and highlighted our government’s disregard for providing care to vulnerable groups. As a leader of the Sickle Cell Aid Foundation, I challenged this bill. Alongside the coalition, we put forth recommendations that insisted on including disability support in the legislative framework to incorporate socio-economic support, health financing, education and employment inclusion for patients.
Should stakeholders sit on the fence when disability inclusion is concerned?
One can argue that sickle cell disease may not represent physical disability initially, and therefore should not qualify as a disability. But over the life span of a sickle cell patient, depending on routine care, there will be unavoidable crises. Some further complications will include mental health challenges and physical disabilities from necrosis of different body parts hindering mobility and ease of livelihood.
Can you imagine 4 million sickle cell disease warriors in Nigeria having access to life-saving resources simply by understanding the importance of advocating for inclusion and embracing the term “disability”? Vulnerable groups need to understand the resources that could be made available to them, have a safe space to ask for help and take advantage of help when offered.
Our government, informed by dire SCD statistics, must take a visible leading role on the campaign, practice, and awareness of inclusive policies and bills concerning SCD and other health conditions that may lack legislative representation.
Beyond government action, it is also crucial for the public to build compassionate and inclusive environments and be kind to people with health conditions.
Finally, just like awareness and education on HIV/AIDS have gone through the journey of open conversations, sickle cell disease patients and support groups must push for inclusion through campaigns and policy engagements that keep dialogue at the forefront of this national challenge.
With the right resources and treatment, people with sickle cell disease can live wholly and enjoy most of the activities other people do provided they have the correct information, assistance and support.
Elmer is the President of Sickle Cell Aid Foundation in Nigeria