CAUSE MARKETING
More Awareness About Cleft Needed Among The Media
By Emily Manjeru
What do you call cleft in your mother tongue without sounding offensive ? Tough , isn ’ t it ? How tough , then , it must be for the members of the fourth estate to describe the same to their audience who are isolated and stigmatized .
What is cleft ? A cleft is a gap or split in the upper lip and / or roof of the mouth ( palate ). It is present from birth . The gap is there because parts of the baby ’ s face did not join together properly during development in the womb . Left untreated , the child struggles to eat , breath , speak and can be traumatizing to the patient to grow up to their formative years because they will be called names and bullied .
Cleft is surrounded by myths and misinformation , and poor awareness is why it is associated with a curse or witchcraft . Awareness about the condition at the community level ensures early intervention , enabling the patient to thrive . Admittedly , I only got to know about cleft in 2015 , but if you were alive in the early 2000s , underground rapper Kitu Sewer of the then underground rap / hip-hop group Ukoo Flani Mau Mau group had a treated cleft . ( How old am I ?)
Smile Train has been deliberate with engaging media as key stakeholders in creating awareness . In Zambia for instance , we met a journalist who had a neighbor with the condition , but always thought that the person was cursed . In Ghana and Tanzania , we met reporters whose children had cleft and had received treatment . For them , the training was personal . It was interesting to note that many had never encountered a patient with cleft or even knew where to refer the patient . During the trainings , we bring in beneficiaries to put a face to the condition . The children are beautiful , the mothers having gathered the courage to testify just how heavy the burden of societal condemnation was prior to treatment . The trainings are facilitated by seasoned and award-winning journalists to refresh the journalism skills among peers .
In 2021 , we carried out a media workshop in Nigeria , and went the extra mile to introduce an award , which raised a lot more awareness about cleft and about our programs . Since then , there has been a slow but progressive behavior change among the community , with less adults presenting for treatment , as it should be , but the battle is far from won .
Smile Train being the largest cleft organization values media engagement , but the astronomical advertising or awareness creation budgets are doing a disservice to the patients who need treatment and cannot afford a meal for the day . There is need for increased goodwill and training among the media about the condition and recognizing how much social and economic value there is in treating one patient . Research done in collaboration with Smile Train in 2016 demonstrated that as much as $ 50,000 can be ploughed back into the economy by treating one patient with cleft .
The media have abandoned their watchdog role in holding policy makers accountable towards addressing neglected surgical conditions . Covid-19 taught us that mission type treatment models are unsustainable with a gaping need to empower local medical professionals to provide care . This , perhaps , may be a less glamorous story in the daily diary .
Neglected surgical conditions will remain neglected if little to no light is shone upon them , in the same way we are doing poorly with our promise to address them in Universal Health Coverage . They need attention too ! There is need for the fourth estate to exercise their watchdog muscle by being the voice for the voiceless .
There are many stories to mine from the cleft ecosystem , from the community health volunteer who rides a motorcycle to help and identify and refer the patient for care , to the surgeon who works in difficult conditions , to the patients themselves , sharing their experiences of living with cleft and how their lives change after the child or adult receives treatment . Perhaps , that story about sustainable surgical systems , of having trained personnel to care for cleft can be told in a profile story or feature .
The fact that there are incredibly talented surgeons in Africa is testament that we are more than capable to manage our healthcare systems better . It ’ s to our benefit to share some good news for once . For the patients who are treated early , their story is more promising . Look at Chelmis Muthoni who received treatment and speech therapy and is one of Kenya ’ s top lady engineers , having developed a glove that interprets sign language ! Thanks to Smile Train ’ s partnership model , the healthcare professionals and the patients are locally available as news sources .
As we endeavor to professionalize the journalism craft , there is a need to go back to the basics of what makes a good human interest story . These stories are life changing and when told with accuracy , dignity and respect they have greater societal impact . We need to work together to shore up advocacy efforts . Having media as partners at the table is a great start towards curbing stigma that patients with neglected surgical conditions experience .
Emily Manjeru is the Communications Manager for Africa at Smile Train . You can commune with her via mail at : Emilymanjeru @ gmail . com .
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