Fin 2021, ma cousine Elizabeth a reçu un diagnostic de cancer du col de l’utérus à un stade avancé. Cela a été un gros choc pour notre famille et nous avons mis du temps à l’accepter. Depuis son diagnostic, je suis sa principale aidante. Je m’occupe de ses rendez-vous à l’hôpital et des autorisations de l’assurance maladie pour qu’elle reçoive sa chimio, et j’utilise un langage simplifié pour l’informer de son état.

Je suis devenue l’aidante d’Elizabeth à cause d’un contexte familial marquée par l’absence de soutien, avec notamment un conjoint qui ne l’a jamais accompagnée à l’hôpital et qui ne s’est jamais vraiment inquiété de son état de santé. J’ai dû veiller à ce qu’elle ait accès aux informations nécessaires car elle avait très peu de connaissances sur le cancer du col de l’utérus. Comme je n’ai pas de formation médicale, j’ai consulté des amis professionnels de la santé, lu des articles en ligne et rejoint des groupes de lutte contre les MNT. Je l’ai également accompagnée à des rendez-vous médicaux et j’ai interrogé les médecins sur son pronostic, avant de lui transmettre ces informations en utilisant les termes les plus simples possibles.

Dans nos communautés, il y a peu de campagnes de sensibilisation sur les maladies chroniques, même si de nombreuses personnes suivent une scolarité. Elizabeth et d’autres ayant peu ou pas d’éducation formelle ont un accès limité à ces connaissances. Elle a eu des douleurs persistantes et des saignements vaginaux pendant longtemps avant de passer des examens. Elle était réticente à en parler avec quelqu’un, y compris au sein de sa famille, par peur des réactions. Au bout d’un certain temps, elle a abordé le sujet avec un membre de sa famille éloignée, mais s’est ensuite repliée sur elle-même lorsqu’elle a réalisé que cette personne l’avait raconté à sa fille.

À un moment donné, la douleur l’a obligée à se rendre dans un établissement local qui l’a renvoyée vers un établissement plus spécialisé pour des examens plus approfondis. Mais elle ne s’est pas présentée à son rendez-vous spécialiste à temps à cause de la stigmatisation sociale associée aux problèmes de santé reproductive, et parce qu’elle s’inquiétait de ce que les gens diraient de sa maladie « bizarre ». Il a fallu l’intervention d’un autre membre de la famille pour qu’elle se rende à l’hôpital spécialisé où elle a passé des tests qui ont établi un diagnostic de cancer du col de l’utérus, à un stade avancé. Son sort est celui de nombreuses personnes au Kenya.

Les communautés locales sont peu sensibilisées aux MNT et à la prévention. Si l’on y ajoute la stigmatisation sociale, cela nuit au dépistage précoce et à la prise en charge. Au cours de mon parcours en tant qu’aidante, j’ai dû faire face en permanence au défi d’acquérir, de simplifier et de transmettre des informations à Elizabeth concernant son état. Étant donné le stade avancé de sa maladie, je dois également l’aider à gérer ses attentes en matière de traitement et à accepter les soins palliatifs prescrits.

People living with NCDs in Kenya face a myriad of challenges when it comes to prevention. With support from NCDA-Kenya, I have been doing a lot of advocacy in my community on prevention and early detection. As a caregiver, I joined a support group that aims to educate and link communities to NCD prevention, detection and care services. Through this group, I have learned about significant challenges that people living with NCDs in my community face when it comes to prevention and early detection.

One such person is Nawate, a middle-aged man who lived with undiagnosed and untreated hypertension for over five years. Since there was limited knowledge among his family members on the condition, they resorted to traditional healing, which had resulted in no improvement in his health outcomes. Over time, he experienced and fortunately survived a stroke as a result of the untreated high blood pressure. That is when they reached out to me in order to be linked to a healthcare facility, for which they had to hold a fundraiser in order to afford his treatment. He currently has hemiparesis, and is dependent on a wheel chair for movement.

Esther, an 83-year-old woman, is another individual who also developed hemiparesis from stroke, secondary to uncontrolled high blood pressure. Progress with efforts to improve function on the affected parts has been very slow. Before this, she had been receiving medical care for other conditions, including knee replacement surgeries after living with arthritis for over ten years. This is when she was first diagnosed with hypertension. Despite these clinical encounters, no provider candidly communicated to her the status of her blood pressure, and formal mechanisms for managing it. She is now dependent on other family members for movement in and out of her house. Owing to her condition and coupled by old age, her quality of life has greatly deteriorated.

These individuals, like Elizabeth, often only seek care when symptoms have escalated and become unbearable. This must change, and NCD prevention interventions should start with appropriate knowledge dissemination, which is particularly lacking in local communities here. Then, local facilities must be equipped with the resources and health professionals to be able to provide accessible and affordable prevention and early detection services that the population greatly needs.

Myself and many people with lived experience of NCDs in Kenya, including caregivers, face challenges when it comes to NCD prevention. As expressed through the stories I have shared, there are limited early detection services, societal stigma and discrimination, widespread misinformation and misconceptions on NCDs, financial barriers to access services, and inadequate healthcare resources and expertise required to identify and manage NCDs.

I call upon Kenya's Ministry of Health to institute the following measures, which are necessary to address NCD prevention at the community level, and ultimately the growing burden of NCDs in Kenya more broadly:

1. Develop and implement a responsive community strategy for NCD prevention and early detection cross the country, primarily through training community health workers. Through county community strategy departments, the government should roll out training for community health workers on prevention and early detection of NCDs. Community health workers are key to a strong NCD prevention and early detection response as they are well established among the local communities, and they are the first point of care. Furthermore, most local communities rely on community health workers for medical guidance and education; hence empowering them with this crucial NCD-specific knowledge will be essential to increasing basic NCD literacy and awareness on the importance of prevention and early detection in communities.
2. Ensure that community health facilities across Kenya have the expertise and equipment necessary for NCD screening and diagnosis. Since community health facilities are the first point of care, equipping them with the necessary resources will contribute to reducing the frequency of late NCD diagnoses, as oftentimes people must seek higher levels of care in order to receive an accurate diagnosis.
3. Implement national information campaigns on NCD prevention. This can be done by utilising the existing community health infrastructure to promote public awareness on NCD risk factors and the importance of prevention and early detection. Supporting trained community health workers to carry out targeted public sensitisation will contribute to increased uptake of NCD prevention and early detection services among locals. For this measure to be successful, it is critical that the previous two proposed interventions are carried out, to ensure that this rise in demand is met by increased supply of high quality and accessible prevention and early detection services at community level.