Home Comments The proposed Sickle Cell Disease Bill needs to classify Sickle Cell as...

The proposed Sickle Cell Disease Bill needs to classify Sickle Cell as a disability

243
0
Governor, Senator Dr. Ifeanyi Okowa (right) listens as the Managing Director, Asaba Specialist Hospital, Dr. Peace Ighosewe explains the functions of the Variant newborn screening machine donated by the 05 initiative to the Sickle cell referral centre of the Hospital during the inauguration of the facility in Asaba.

By Olaoluwakitan Babalola

TUE SEPT 15, 2020-theGBJournal-It is no longer news that Sickle Cell Disease (SCD) is one of Africa’s most prevalent non-communicable health issues. This is evidenced by Africa being the world’s capital for people living with SCD, the presence of a whopping 75% of the world’s annual estimated SCD births living in Sub-Sahara Africa as well as Nigeria having the highest prevalence (30%) of the global SCD prevalence in the world.

Implementing laws, policies and systems for the effective management of SCD should therefore be at the forefront of global health goals for African leaders. Which is why the emergence of a proposed 2020 bill for the prevention, control and management of SCD in Nigeria has been lauded by SCD patients, their families, SCD NGOs and healthcare providers as it has been a long time coming. While the Bill is a step in the right direction in terms of institutionalising support to prevent SCD, it seems to have an ad hoc, rather than holistic approach to it, especially when viewed from the perspective of people currently living with SCD and their families. Research by public health experts recommends practical steps to combating SCD effectively to include preventive, therapeutic and curative approaches.

Even though there is an apparent disabling effect SCD can have on people living with it, the lack of research on best-practice strategies of managing it at the community level also exist. However, the current SCD Bill in Nigeria primarily focuses on legislating just the first level, which involves preventive approaches such as genotype testing, screening and counselling. Concentrating on just legislation leaves the therapeutic and curative measures such as adequate healthcare system, health insurance mental health counselling, palliatives, stem cell transplant, gene therapy etc. unattended. It also lacks social standards, including preventing discrimination in education and employment, which remains a major challenge due to the stigma associated with the disease.

Even with adequate medical support, the reality of SCD varies significantly from patient to patient. While some patients can live fairly normal lives, having no sickle cell crisis or associated

challenges, others are plagued with debilitating complications to the point of frequent incapacitation requiring social support to carry out daily activities.

People with SCD can be confined to bed rest for months due to an array of complications, forced to use wheelchairs or crutches due to challenges like avascular necrosis and leg ulcers. Sudden vision loss is also a common complication due to sickle cell retinopathy. The sudden onset of these challenges makes it particularly challenging both physically and mentally as it can cause people to stop schooling, work and social activities. Additionally, the cost of caring for SCD in Nigeria is too high, complicated by health insurance companies who refuse to cover it in their premiums.

For these reasons, our lawmakers must consider and recognise SCD as a disability and confer the benefits of disability and venerability status in the Bill. This includes prevention from discrimination on the grounds of SCD. So many people living with SCD have been denied opportunities, including employment and scholarships purely based on their genotype.

Even now excluding them from taking part in the National Youth Service Corps (NYSC), without giving them a choice. All these, preventing them from reaching their full potential.  People with SCD have been stigmatised as being lazy in the workplace, and the lack of understanding often leads to job loss. There is also a high rate of depression within the SCD community fueled mainly by stigma and lack of understanding of the disease. In developed countries such as the US and UK, people living with SCD are entitled to social benefits including free housing, income support, subsidised health coverage and free medicines.

While we advocate for the classification of SCD as a disability in Nigeria, we recognise that people living with SCD remain limitless in their potential for greatness. Indeed, we have had people with SCD in Nigeria become world-famous lawyers, musicians, actors, scientists, doctors, lawmakers and politicians, despite their health conditions. However, this Bill presents an opportunity for our laws and policies to adequately confer legal support to prevent discrimination against people living with SCD in Nigeria.

We urge lawmakers to centre the proposed SCD bill on supporting people living with SCD confined to bed rest for months due to an array of complications, forced to use wheelchairs or crutches due to challenges like avascular necrosis and leg ulcers. Sudden vision loss is also a common complication due to sickle cell retinopathy. The sudden onset of these challenges makes it particularly challenging both physically and mentally as it can cause people to stop schooling, work and social activities. Additionally, the cost of caring for SCD in Nigeria is extremely high, complicated by health insurance companies who refuse to cover it in their premiums.

For these reasons, it is imperative that our lawmakers to consider and recognize SCD as a disability and confer the benefits of this status in the bill. This includes prevention from discrimination on the grounds of SCD. So many people living with SCD have been denied opportunities including employment and scholarships purely on the basis of their genotype, preventing them for reaching their full potential.

Sufferers have been stigmatized as being lazy in the work place and the lack of understanding often leads to job loss. There is also a high rate of depression within the SCD community largely fuelled by stigma and lack of understanding of the disease. In developed countries such as the US and UK, people living with SCD are entitled to social benefits including free housing, income support, subsidised health coverage and free medicines.

While we advocate for the classification of SCD as a disability in Nigeria, we recognise that people living with SCD remain limitless in their potential for greatness. In deed we have had people with SCD in Nigeria become world famous lawyers, musicians, actors, scientists, doctors, lawmakers and politicians, despite their health conditions. However, this bill presents an opportunity for our laws and policies to adequately confer legal support to prevent discrimination against people living with SCD in Nigeria. We urge lawmakers to go back to the drawing board and make the proposed SCD bill centered on supporting people living with SCD.

Babalola is with Coalition of SCD NGOs

Twitter-@theGBJournal|email: info@govandbusinessjournal.com.ng