If during the ongoing COVID-19 lockdown and restrictions you did not receive palliative goodies from an organization known as Sickle Cell Aid Foundation (SCAF), you probably don’t mix with your fellow Warriors! In this interview SCAF President, Elmer Aluge, states why the organization has been playing the Good Samaritan in a country where practically every family has a sickle cell story ….
SCAF has proved itself a front-runner in SCD advocacy in Nigeria – when was it founded and why? How far have you been able to realize your objectives? What challenges have you faced and surmounted?
SCAF was founded June 2010 to create awareness on SCD and ensure that individuals living with the disorder, primarily the indigent population, have access to quality and affordable health care. With a two-pronged mandate, SCAF has worked tirelessly over the last ten years to change the narrative on SCD by promoting the positive traits of warriors, encouraging hopeful living, challenging the community on employability, entrepreneurial goals and academic achievements, championing awareness campaigns and policies to effect positive changes and also improving the network of individuals in support communities to influence the general outcome of the community.
Nigeria is listed as the country with the highest prevalence of SCD in the world with daunting statistics. Post several awareness campaigns done nationally, it is glaring to us at SCAF that stakeholders are yet to fully highlight the direness of the situation and reflect the right attitude and seriousness in deliberating on SCD prevalence, prevention, control and management.
For reasons ranging from negligence to unavailability of equipment for treatment in hospitals, SCD warriors have faced challenging crisis with many losing their lives in the process. Another challenge will be the rigors of dispelling STIGMA associated with the condition which we have seen in various communities around the country. Another huge challenge is navigating through religious bias preventing treatment and holistic care.
SCAF went all out to assist children and adults with SCD with pandemic palliatives – was this gesture confined to the SCD family in Lagos State alone?
Not at all. During the COVID-19 pandemic, individuals living with SCD were categorized as a high risk group especially because of an already compromised immune system and this burden challenged SCAF to set up the Warrior Fund Initiative to ensure Warriors across the country were equipped to do shield and isolate effectively. Packages filled with monthly supply of routine drugs, food supply, disinfectant and other Covid-19 support materials were delivered to the doorsteps of warriors in various cities and states to limit exposure and ensure no SCD warrior was lost to the pandemic.
You conducted the palliatives gesture in partnership with Fidelity Bank Plc – is this your first time of working with the Bank? How would you rate Fidelity’s CSR?
We conducted the relief package delivery in partnership with Fidelity Bank in five states – Lagos, Ondo, Kebbi, Borno and Yobe, catering to 500 warriors. Interestingly we have worked with Fidelity Bank before in the coalition alongside other SCD NGOs on the Red Umbrella Walk in Lagos State. This was our first national project working independently with the Bank.
I would rate Fidelity Bank’s CSR as amazing, thorough and understanding. In these climes, SCD is not given adequate attention unlike malaria and HIV. It is not the first point of call when organizations are looking to provide CSR. We are very appreciative of the bank’s team for the stress-free support, understanding the rigors that come from approaching organizations for support in this space.
What would you like to see other corporate organizations do for the SCD community in Nigeria in this pandemic period and beyond?
First, I would like to see companies provide access to funding for qualifying programs and projects for organizations that have the capacity and zeal to make a difference and improve the lives of Warriors in the community in education, awareness, treatment, research and advocacy. Secondly, I am encouraging a conscious shift in the approach to employability and employment especially for individuals with disability including SCD. Corporate organizations should look into work from home arrangements, alternating work days structures and flexible work schedules as a way to boost employment as well as to improve equity and inclusion which translates to an improvement of the economy. It is important for corporate organizations to take advantage of sound-minded individuals that have disabilities that might impair them from commuting or working in conditions that may seem okay for some but pose grave challenges to their health. The pandemic has shown that whilst we thought converging in a physical building was the only way to ensure company objectives and targets are met, the work from home and alternate day work structures have shown minimal decline in productivity. Lastly, for corporate organizations to come onboard as stakeholders not just for financial support but for advocacy as SCD is indeed a matter of national concern in Nigeria.
Do you think the Federal and State Governments are doing enough as regards SCD awareness/support?
Whilst I will say the Federal and State Governments are doing some work in awareness and support, not enough is being done. Access to quality healthcare is currently not a priority in many states especially since at this stage State and LG clinics/hospitals are not equipped to serve as primary/secondary care, treatment and management centers. Funding for research and bottlenecks in gaining access for same are currently stringent and incorrigible. Awareness campaigns by state governments with an understanding of the statistics before us are minimal and un-targeted at the moment, which is poor as we need all hands to work together. Access to health insurance especially on the federal level is currently appalling as warriors even with paid health insurance (NHIS) have limitations in treatment, which should not be the case. Current policies need redrafting as they are not favorable to the community, and do not show seriousness of government in making changes. Some states are stepping up to the plate, but until it is a collective effort, we will be fighting an uphill battle.