Dr Miriam Mutebi.


She also mentors colleagues and undertakes research into the healthcare barriers faced by women in East Africa when they have cancer. Somehow, Dr Mutebi found the time to tell us more.

You are researching the barriers patients in East Africa face in accessing care. What have you found?

Financial concerns: Paying out-of-pocket to access care frequently results in financial toxicity and catastrophic health expenditure. Hospital insurance, like the Hospital National Insurance Fund in Kenya, has helped to mitigate some of these costs, but ultimately many patients still bear some of these devastating costs.

Treatment delays: Many patients in sub-Saharan Africa will have to go through three to four health providers before a definitive diagnosis. If the patient needs a biopsy they have to pay for a needle, the initial pathology and then any additional testing, causing more delays.

There’s also a lack of awareness amongst healthcare workers about common signs and symptoms of breast cancers. You find that someone’s been treated with antibiotics for months on end for an “unresolving mastitis” and being reassured about a new lump, that if they’re breastfeeding, it can’t be anything to worry about… by the time they come to us unfortunately the tumours have progressed considerably.

Socio-cultural barriers: We don’t talk about these often enough. In many parts of East Africa, women are not the primary determinants of their health-seeking behaviour. As Africans, our strength is a sense of community. But this can be a double-edged sword when this results in patients lacking agency in their treatment decisions, where a community says “we have decided for you, this is what’s going to happen”. There’s also a sense of cancer fatalism, where one believes that cancer equals death, so we’re trying to shift narratives around that. Cancer stigma plays a part too.

How does this stigma affect treatment seeking?

Unfortunately, a lot of stigma around reproductive cancers is based around shaming the patient. Some communities say “breast cancer came because somebody other than your husband had access to your chest”, or “you got cancer because you’ve had an abortion”. Such myths make women reluctant to disclose their cancers and may contribute to delays in accessing care.

One patient said she was looked at “like a coffin in waiting”. That’s how people would look at her, nobody wanted to interact, some believed it was contagious and they were surprised to see her alive after a couple of months.

Stigma is a very nuanced concept… There’s the lived experience of the patient, but it’s even anticipatory, where the patient thinks they will be discriminated against.

One patient had the uncomfortable situation of sitting through a women’s meeting where they discussed a common friend with cancer and determined that she was going to die. She stopped going to any subsequent meetings as she knew what could potentially await her if she inadvertently disclosed her cancer status.

I have also had patients who have been terminated at work because they’ve had a diagnosis, or because their employer was not impressed that they needed time off for therapy. There’s such a broad definition of stigma that we need to look at all these facets… or we risk doing them a disservice.