Who Should Live Documentary: The story of resilient Sickle Cell warriors

By Wifah J. Nde

Bamenda – February 12- Cameroon News Agency: “The last time I was hospitalized [on January 1, 2025], I went alone and the nurses insisted I should call my caregiver. I told them I was tired of detaining my family,” 25-year-old Tata Sonita says her condition is now a mix of mental health and pain. Her pains go from physical to psychological, worsened by the economic meltdown in her family.
Being in frequent crises (painful episodes in sickle cell sufferers) from when she was born, she has, on some occasions, opted to give up (to die). However, love from her family and environment constitutes her strength which has now raised her to a sickle cell warrior.
“There was a time I was in a comma, and the reason I had to fight for my life was mostly inspired by the love from family. That’s when I realized that your life depends on you. If you can give up and you give up, it’s the end. A supportive environment gives you more reason to fight, and that is the fighter I have become.”
Premiering the documentary film “Who Should Live” on Sunday, February 10 by the Bamenda Film Association, the ultimate goal of Sonita and her co-warrior, Nuibim Lewin is to share their pain, representative of the 20% population of sufferers in Cameroon, to bring to the awareness of the public, the need for a sickle cell free society. To Sonita and her peer, averting sickle cell is not a herculean task. It only takes a little effort of intentionality. “It should be made a matter of policy that the genotype of children be included in their birth card, and even on ID cards so people are readily aware of the choices they make”
This opinion is also held by the producer of “Who Should Live”, Dr. Dingana Terence, District Medical Officer of Tubah District Hospital who also runs a Sickle Cell Clinic in his hospital of operation argues that the height of our National Identity Card is not as relevant as the genotype of every individual as sickle cell disease which remains a growing public health concern. Though data on sickle cell disease in the country remains blurry, Dr Dingana argues that the prevalence is 5%, and predominantly in remote communities where cultural ties are firm, with limited knowledge of gene compatibility.
A Journey of Empathy, Passion for Awareness Raising
The journey to producing “Who Should Live,” has taken the director, Asogho Constant, and his team, two years to weave the stories of two young people in Bamenda living with sickle cell disease. Through their experiences, the film challenges misconceptions while stressing the urgent need for better healthcare support in the NW Region. “There were days when we went to the hospital to shoot, and because they were in crisis, we couldn’t shoot while they go through the pains.”
The film doesn’t shy away from harsh realities. It reveals the recurrent pains of warriors, the financial burden on families to keep the warriors alive, and the struggles of medical personnel who are under pressure to rescue lives. Who Should Live questions the insensitivity of sickle cell carriers (AS genotype couples) who may opt for procreation despite the risk ahead? And if this must be allowed with prior knowledge of the dangers, then who should live?

The Weight on Family Depletes Financial Resources

In a touching scene, an interview reveals the financial struggles families face. Monthly medication costs can exceed 50,000 FCFA, an amount many families struggle to afford, let alone hospitalization which drains hundreds of thousands from family funds. “If you have these children and you don’t have financial stability, they will not survive,” Lewin’s mother who had lost two of Lewin’s siblings attests. Yet, the documentary balances these challenges with moments of triumph – Lewin, like Sonita, are smart student at school. They buzz with dreams of supporting their communities and rewrite public health narratives. They are investing so much in research on sickle cell while maximizing every platform to reverse sickle cell trends in the country through awareness raising and advocacy in schools and on the runway.
Targeted Viewers
Guests at the documentary screening were carefully selected to shine shared perspectives from diverse stakeholders. Among them, are healthcare providers, religious leaders, academics, civil status professionals, civil society, and the youth who should propagate the advocacy to knock the sickle cell disease off.
“We wanted to pitch our idea to them because we need their support – to assist warriors while eradicating the disease,” Asogho, said. A panel discussion that featured all the representatives above including the Regional Delegate of Public Health for North West gave the warriors an exciting revelation that the Ministry of Public Health shall be conducting research to deliver quality findings about the prevalence of sickle cell in Cameroon. The team hopes that such findings will help inform the right policy for sickle cell eradication in the country.
It is the goal of the documentary producer, Dr Dingana Terence who lives the daily reality of witnessing the pains sickle cell patients endure each time they are brought to the hospital; that the burden of sickle cell be reduced right from the community level. “As a clinician, if the burden of sickle cell is reduced right from the community, at the level of the health facility, we would have some relief,” D.r Dingana said
The team hopes that after a postmortem scheduled for February 12, 2025, it will be resolved if “Who Should Live” is scheduled for screening in other parts of Cameroon, and when it will be hosted by media channels for public consumption. “This isn’t just our story anymore. It belongs to everyone who needs to understand that living with sickle cell disease doesn’t mean giving up on life,” Sonita said.

Wifah Nde is a freelance journalist with a knack for community stories that support development efforts. He has over six years of experience in print journalism