The Nigerian government has been tasked to Improve emergency Sickle Cell Disease, SCD, services to ensure quick and empathetic response and also to widen the cover of the National Health Insurance Act, NHIA, for persons living with SCD.
The call comes amid the commemoration of the 2024 World Sickle Cell Day, with the global theme, “Hope Through Progress: Advancing Sickle Cell Care Globally.
As sickle cell disease continues to pose a significant health concern in Nigeria, health experts and advocates are now brainstorming on solutions to help reduce the prevalence of the disease, which stands at 100,000 to 150,000 sickle cell births annually in the country.
In Nigeria, Cross River State has the highest SCD prevalence rate similar to the national average according to a 2019 study by Hematologists.
Recently, our correspondent sat down with an SCD survivor, a health advocate and a Nguvu Change Leader, Onor-Obassi Egim Tawo, to look at the sickle cell scourge as it affects Nigeria.
Here are excerpts…
DP: In your experience from the advocacy work that you do, how bad do you think the Nigerian sickle cell situation is?
It is as bad as it can get. We are the world’s capital of SCD, our healthcare facilities are not structured well enough to provide the needed care, our government is doing little to nothing about it, and awareness is very minimal. Public Health awareness campaigns are mostly sponsored by individuals, individual organisations, sickle cell communities and groups. The Sickle Cell Act is still waiting to be enacted among other issues.
DP: Tell us a little about your experience working in the sickle cell awareness space
Aside from my personal experience living with SCD and having lost a brother to SCD, working in the sickle cell space exposed me to the needs of the sickle cell community, and the perception of society to this community before and after our campaigns. As an individual, I do not have the monopoly of experiencing everything warriors (persons living with SCD) experience but working in this space, sharing experiences and helping these people exposed me to their needs, and how best to help and promote awareness.
DP: Who is more likely to be impaired by SCD, a child or an adult
An adult is most likely to be impaired. As a child, one is still under the care and protection of parents and may not fully know or understand the realities of living with SCD.
As an adult on the other hand, interacting with society, working and earning a living, making choices and being responsible for one’s self, you come face-to-face with these realities. For instance, dealing with stress as a child can be managed by the parents to prevent a crisis. They may decide the child should go not to school for a week, or take an exam or participate in sporting activities etc. As an adult, it is difficult to manage stress when you have to work to earn a living.
DP: From your work, how common will you say SCD is, and where is it most prevalent in Nigeria?
My campaign efforts have been physically limited to Cross River State even though our virtual programmes have a wider reach to at least 9 more states in Nigeria. Every space I find myself in, in secondary school, at the University, law school, church, social gathering etc, there is always someone living with SCD or a caregiver to someone living with SCD. The prevalence rate is quite high in Cross River State. According to a 2019 study authored by most of my Hematologists¹, the prevalence of sickle in Calabar, Cross River State is similar to the national average.
DP: What are the biggest challenges against ending sickle cell disease you have seen in your work?
One major challenge is indifference to the knowledge, impact and existence of sickle cell disorders by members of the public who will rather hold on to the myths and negative perceptions they have about SCD.
A solution to this is the government’s active involvement in awareness creation, enacting and implementing laws and policies for the prevention of SCD as well as laws against discrimination of persons living with SCD.
DP: Does Nigeria have what it takes to care for SCD patients
Yes, we do. We just need to organise our priorities and have a reorientation about SCD, understanding that it affects every one of us directly or indirectly regardless of age, gender, political, cultural or religious orientation or social standing in society.
DP: How do you think the Nigerian healthcare systems can improve support for those living with SCD?
Improve our emergency services to be quick, empathetic and more responsive. Most times during SCD emergencies, we have very tired doctors, possibly exhausted from working all day available to respond to the emergency and somehow take out their frustrations on the crying patient.
Ensure healthcare facilities are adequate to meet the needs. I had surgery 3 years ago and because of the absence of equipment, I had to stay in the hospital for 3 more weeks while the doctors improvised a tool to serve the same purpose.
Train our healthcare providers on the peculiar needs of SCD patients.
Widen the cover of the National Health Insurance Scheme (NHIS) for persons with SCD etc.
DP: What strategies or treatments do you think are most effective in managing the disease?
Basically, good food, drinking enough water, taking routine medicines and adhering to the doctor’s instructions; are the “dos” and “don’ts” of SCD like avoiding strenuous activities and the effects of extreme temperatures. This will to a large extent limit frequent breakdowns and prevent complications. The strategies for managing SCD will depend on each warrior.
DP: What kind of support do patients need from family, community or even healthcare providers?
Empathy mostly. Not pity. Warriors will also need medical, financial and mental health support for their health and well-being.
DP: Are there support groups or resources for patients
Yes, there are. Several even. Most sickle cell organisations have a support group component, in-person or virtually. My organisation, Okare Sickle Cell Foundation annually hosts a support group event for warriors and their caregivers. Some hospitals like the University of Calabar Teaching Hospital (UCTH) have a support group for persons living with SCD who meet regularly.
DP: How do you think awareness can be raised to educate the public about SCD?
There are several ways SCD awareness can be raised. I have explored several of these and found them effective;
Hosting SCD awareness events
Community outreaches
Outreaches to secondary schools, tertiary institutions and religious institutions
Through media outlets like Radio/TV, newspaper publications, billboards etc
Through social media platforms
DP: How can the public get involved in awareness creation
By first becoming intentionally aware. You cannot give what you don’t have.
DP: Do you think policy changes are necessary in the fight against sickle cell disease?
Yes, there are. As earlier stated in my answer to question 5, policy changes are necessary because they establish a framework of how things should go regardless of any individual inclinations, biases or personal belief systems.
DP: Any special systemic gaps or healthcare challenges you would want the government to work on?
Yes. SCD is suffered by a majority of Nigerians. The government should treat it like a public health concern that it is and make it a priority. We have a National Health Insurance Scheme (NHIS) that does not cover pain management medicines, certain hospital stays and surgeries. I know this from personal experience. I believe the scheme is discriminatory in this sense. The NHIS Scheme should be reviewed with the understanding of the peculiar needs of the sickle cell community.
The government should also establish a practical strategy for fighting SCD. Laws and policies should be put in place for the prevention, care, and management of SCD, as well as research into treatments/cures. Policies like mandating genotype counselling and testing for intending couples during the marriage registration process as proposed in my campaign at one campaign to the Ministry of Interior.
DP: How do you think communities can better support individuals with sickle cell disease?
I believe that with proper awareness and education about SCD and the troubles associated with living with SCD, our communities can better support the SCD community. The negative perception will cease and there will be more empathy and necessary accommodations for persons living with SCD at work, in schools, in our healthcare facilities and in our religious and social gatherings.
DP: What is your take on the issue of stigma, is that real for SCD patients?
Yes. Very real. Consciously or unconsciously, people stigmatise people living with SCD and their caregivers/parents. This is because SCD is viewed as something to be ashamed of; a curse, witchcraft, or that the carrier is a good pretender.
This negative perception of persons living with SCD is sponsored by either ignorance, indifference or an absolute lack of empathy especially when it comes from healthcare professionals and/or caregivers.
DP: From your experience in the field, how expensive is it to manage SCD
Managing SCD is not a one-size-fits-all thing because it is experienced differently in different individuals. Consequently, the management and quality of care for each individual will be different.
The basic routine medicines are not expensive: Folic Acid, b-complex, paludrine, vitamin C etc. However, pain management would require some stronger pills, infusions and hospitalization for days to weeks. Some carriers rarely experience the pain episodes, others can experience it on a monthly basis. Some carriers, in addition to managing SCD, could also suffer complications like leg ulcers, eye problems, organ failure, avascular necrosis etc requiring comprehensive care. Most times this care will include surgical procedures. This was the case with me that inspired my book, Northwest. So yes. Managing SCD is expensive.
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