Actor Emmanuel Ikuebese addresses sickle cell myths, stigma in new movie, Mzigo project

Actor-turned-filmmaker Emmanuel Ikubese has taken significant steps to address sickle cell disease through a new initiative, the Mzigo project and its accompanying film.

According to the World Health Organization (WHO), sickle cell disease is a genetic blood disorder that affects an estimated five per cent of the global population.

Ikubese’s Mzigo project is not just an initiative but a powerful force that tackles the burden of sickle cell through media engagements.

In an interview with PREMIUM TIMES, Ikubese disclosed that he’s raising awareness about sickle cell and inspiring hope within the disease’s community.

He blamed the lack of awareness for the high prevalence of the disease across Africa, particularly in Nigeria, stressing the critical need for more awareness campaigns.

He said: “The Mzigo project is a multimedia campaign to raise awareness of sickle cell disease in Nigeria and across Africa. Through creative storytelling and various initiatives, it seeks to bring sickle cell into the mainstream media and inspire hope within the sickle cell community. Anyone who knows me understands that I’ve been deeply passionate about establishing my brand throughout my career. I aim to use my platform to highlight societal issues.

“For instance, when I launched the Emmanuel Ikubese Foundation, our initial project, RAW (Respect A Woman), focused on raising awareness of domestic and gender-based violence. We leveraged the media and enlisted support from colleagues in the industry to bring these issues into the mainstream. Today, they are among the most discussed topics, even at the UN. This evolution wasn’t planned but emerged from my lack of awareness, particularly regarding sickle cell disease, where I realised I had contributed to the problem.”

Programmes

Leveraging his international platform, Ikubese, who represented Nigeria at the Mr World 2014 pageant and emerged as the first runner-up, revealed that he produced a film to enhance awareness about the disease further.

The film is based on Ikubese’s debut book, which delves into the complexities of sickle cell.

The film boasts a pan-African cast featuring prominent actors like Daniel Etim Effiong, Seun Ajayi, and Tanzanian star Elizabeth Michael.

“The film is in post-production. We’re aiming to release it in September. The plan with this initiative is to keep the conversation around sickle cell in the mainstream media all year round. That’s the whole idea. We ran for RAW in February, focusing on love and raising awareness. We also aim to help people living with sickle cell by putting them on HMOs, which are medical insurance plans.

“Especially in low-income areas. For the past two years, we’ve been participating in the Lagos City Marathon and raising millions of Naira to fund HMO coverage. We’re focusing on the Sing for Sickle Cell Warrior Challenge, which we launched on World Sickle Cell Day. It is important to use music as an awareness tool and inspire hope in the sickle cell community. Other initiatives, like a Blood Drive, will come up later. Additionally, we have a book and other projects to bring the sickle cell conversation into the mainstream media.”

Advocacy sustainability

Ikubese, who rose to fame after he was crowned Mr Nigeria in 2014, decried the limited government support for initiatives championing sickle cell awareness. He emphasised the heavy burden (financial and logistical) placed on organisers.

Ikubese admitted to relying on the generosity of friends and his funds to keep the initiative afloat. He explained how he skillfully integrated the initiative into his schedule, even while juggling his creative pursuits like filmmaking.

“The reason these projects struggle to be sustained isn’t due to a lack of desire to continue them. For example, in Project RAW (Respect A Woman), we made a film called *Blackout*, and then in 2018, I did a TV series in Uganda, which raised awareness about not just domestic violence but also sexual abuse, rape, HIV/AIDS, and other causes. As a filmmaker, many of my themes revolve around shedding light on issues often swept under the carpet.

“Like I said, the fact that I had this conversation touched me deeply. Seeing my ignorance, I thought, if I’m ignorant about something, then it’s likely significant. I started asking questions and realised that many people shared my ignorance. I feel that sickle cell is one of those issues. For example, out of five people, if you ask a few people about it, you will probably find three or four who know someone, perhaps not a close family member but maybe a distant relative or friend, who has dealt with sickle cell,” he added.

Ikubese said despite the challenges of creating a sustainable project, he is determined to use his creativity to raise awareness about sickle cell disease in mainstream media.

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“So it’s not just for attention; it’s what I want, and you will always see me do for the next 10 to 20 years. When we were in primary and secondary school, terms like ‘sicklers’ were commonly used, revealing our complicity in perpetuating harmful stereotypes against the sickle cell community.

“In 2020, a friend coping with sickle cell opened my eyes to this reality. Shortly after, I tragically lost a cousin to the disease, a poignant reminder to amplify my voice and utilise my resources—media and industry connections—to advocate for change in mainstream media.”

Sing for Sickle Cell Warrior Challenge

Ikubese said the need to raise awareness about sickle cell disease led him to create the Sing for Sickle Cell Warrior Challenge (SSCWC).

“We did a song written by an artist, Neon Adejo. The song features IB QUAKE, a spoken word artist, and we used it to inspire people on World Sickle Cell Day. With the challenge, we’re encouraging people to create their renditions of the song.

“Whether it’s spoken word, rap, or singing, just do your verse. Two things are important: be creative and make sure you’re singing about Sickle Cell. You must do your research. We’re also providing many resources with information and facts about Sickle Cell on our pages so people can use them creatively to create their renditions.”

He said SSCWC participants aren’t limited to sickle cell patients alone, noting that the competition will open on 1 July and end in September, which is Sickle Cell Awareness Month.

Ikubese mentioned that judges will select the winners in September, while the challenge will conclude on August 30th.

“The idea is to take these things to spaces where I could not reach my followers. IB QUAKE would not get it. Neon would only go to some of the blogs. But you, as your individual, have just 5,000 followers. You have your reach. And with that reach, you can inspire someone there. You can inspire someone to know more about Sickle Cell and encourage a Sickle Cell warrior who might be unable to reach us even if we have 5 million followers,’’ he noted.