In most parts of the world breast cancer has one of the highest rates of avoidable mortality. In sub-Saharan Africa, however, three women for every hundred die annually due to breast cancer.
In Malawi breast cancer is the third most-common cancer in women, with very low survival rates from the time of diagnosis (average of 5.6 months). Only 9.5% of patients survive beyond 18 months.
Led by RCSI’s Institute of Global Surgery, Akazi is a project designed to promote a systematic approach to breast cancer control in Malawi and to facilitate efficient utilisation of available resources in the country. The team is trying to improve survival, reduce suffering and lessen the cost of prolonged care for patients, and their families.
Antonio Jaén Osuna is the Communications Lead for Akazi. Here, he shares his reflections following a visit to one of the two breast cancer clinics serving the women of Malawi:
Breast cancer is a sensitive subject to talk about openly, especially in rural communities in low-income countries.
When I started visiting hospitals in Malawi, it was difficult not to compare them with those I was familiar with back home. I interviewed people there to learn more about the available breast cancer services, knowing that in most European hospitals, they are relatively easy to access. In Malawi, however, the story is very different.
Malawi is 1.7 times bigger than Ireland, for example, with more than four times its population. It is the eighth poorest country in the world. Half of its population are women and most of them live in rural areas (82%). They have very low literacy levels and more than 70% of Malawians live below the international poverty line of $1.90 per day.
There are just two clinics in the whole country focusing on breast care. And what you may think of as a clinic might not match the Malawian reality, so let me explain.
Every Tuesday morning, Queen Elizabeth Central Hospital in Blantyre lends a couple of examination rooms to the local breast cancer team. Normally, these rooms are used to cater for patients affected by ear, nose and throat conditions, but for two hours per week, breast cancer specialist and Akazi consultant surgeon Dr Kondwani Chalulu uses them to attend to women who have an issue with their breast that needs to be checked.
Usually, at this time, he sees about 25 women. The same happens at Kamuzu Central Hospital, in the capital city Lilongwe, where Dr Natasha Ngwira runs a breast care clinic. This clinic is open three hours per week. It caters for a catchment area of about five million women who come from the north and the central regions of the country.
When I entered the clinic in Blantyre (the second-largest city in the country), I met a group of women quietly waiting to be called for an examination. They looked tired, with heavy expressions of worry in their eyes. They seemed lost in their thoughts. Most were referred from their local health centres and had to travel far to be there that morning. Many of them are likely to have asked for some kwachas (local currency) to make the journey because a trip like this is expensive, especially for people who live in rural communities.
Dr Chalulu asked me to follow him into a room with the first patient, a young girl wearing her school uniform. Several medicine students entered the room to observe Dr Chalulu at work; it suddenly felt rather busy. I asked them to inform the girl of the purpose of my visit and to ask permission to take some pictures. Once the girl nodded in my direction, I understood that in a country where women rarely have the opportunity to get a medical check like that one, my presence in that room taking pictures was the least of her problems.
I was in that clinic for a while, long enough to see four or five women. Three of them had advanced breast cancer (stage four). It will be difficult to erase from my head some of the images I saw in that clinic. The wounds, the deep sorrow in the women’s eyes, the inequity.
Stigma and barriers
Breast cancer is among the most common cancers affecting Malawian women and a major killer. There is a huge stigma around it, and women in rural communities usually go first to the traditional healers when experiencing breast issues. However, traditional medicine is seldom sufficient to meet their health needs and maybe even harmful if it delays appropriate (and often life-saving) treatment.
When some of these women finally reach their nearest health centres and are referred to the central hospitals in Blantyre or Lilongwe to be seen by a specialist, they will have to arrive during the two or three hours per week of the breast clinics. These are the only times a consultant will be available to assess them. Unfortunately, that opportunity will come too late for many of them.
What to do then? What is the solution to improve this precarious breast care system? These, and many others, are the questions that a group of international experts asked themselves before creating the Akazi project aiming to improve survival, reduce suffering and lessen the cost of prolonged care for patients and their families. This group of researchers, sociologists, doctors and I, a communicator, designed this project to maximise resources and to address the strategic barriers to improving breast cancer outcomes in Malawi.
Akazi analysed, in the first place, the available breast cancer services in the country. The aim was to identify the gaps but also opportunities for improvement. We want to provide data to inform the first national breast cancer plan, a policy document lacking but much needed in Malawi.
In one of the interviews I conducted during my time there, Dr Chalulu highlighted that time for breast cancer patients is a life and death factor. Avoidable delays in accessing care are a major contributor to the deaths caused by this cancer. Aiming to improve the situation, as part of the Akazi project, he has designed a training programme for health workers based in rural areas. They will be taught how to examine women with breast concerns, to identify breast abnormalities and refer patients for further diagnosis and care as necessary.
We also want to bring awareness to rural communities to encourage women to seek care as soon as possible and to improve their chances of successful treatment. That is why we are working with local stakeholders, consulting with community leaders and conducting interviews with breast cancer survivors to understand the best ways to reach potential patients and the people around them. “Many people in the villages don’t know what breast cancer is”, explained a breast cancer survivor in an interview. “They think it is witchcraft. I have been witchcrafted, they say.”
Breast cancer, in general terms, might not sound so relevant in a poor country such as Malawi, with many other health challenges. But we want to talk about the people, the impact of this issue on them, the women who will benefit from this project. We want to help grow and support those local organisations who are working already to improve the response time of health services, and the knowledge of the disease, and ultimately save lives.
As a communications professional, Akazi has been an enormous challenge. But this small project has much to teach us about how we engage with rural populations in low and middle income countries.
Akazi – funded through the generous support of the Irish Research Council – is part of the global fight against breast cancer, against the lack of knowledge and support structures for those affected.
You can find out more about Akazi here.
Photography courtesy of Antonio Jaén Osuna.
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