Dr Miriam Mutebi is a Breast Surgical Oncologist and Assistant Professor in the Department of Surgery at the Aga Khan University Hospital in Nairobi, Kenya. She is the President Elect of the African Organization for Research and Training in Cancer, President for the Kenya Society of Hematology and Oncology, and on the Board of Directors of the Union for International Cancer Control. She is the co-founder of the Pan African Women’s Association of Surgeons and is part of the Kenya Association of Women Surgeons.
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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.
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How can such stigma be combated?
We are learning a lot from looking at other illnesses. As late as the early 2000s in sub-Saharan Africa, HIV patients were abandoned at hospitals and there was generally a sense of hopelessness. But the deliberate efforts by Ministries of Health, the US President's Emergency Plan for AIDS Relief and other associations, in improving access to antiretrovirals, and the broad and consistent efforts of advocacy in HIV, has made this like any other chronic illness and really gives us important transferable lessons in how to reduce stigma around a disease.
I think we are now seeing increasing awareness in our region. It’s based on really strong advocacy initiatives by patients and cancer survivors, and from the health community as a team, looking at how we can help to shift narratives. Policymakers in the region have developed national cancer control plans and policies. Their implementation, along with coverage by national hospital funds, have helped to improve access to cancer diagnostic and treatment services. Clinicians know that cancers, when detected early and managed appropriately, have an excellent chance of survival.
However, unless people come out and say “I’ve had a cancer treated, I’m moving on with my life” then the entrenched narrative around death and cancer continues.
What do you see as the future of cancer care?
A multidisciplinary approach: Cancer care is complex and involves multiple specialities. Unfortunately, in many parts of Africa, patients used to receive care based on whichever clinician they saw first. If you saw a surgeon first, you would blink twice and find yourself in the operating theatre. If you saw the oncologist first, you might receive chemotherapy first.
Luckily, this is starting to change due to a growing consciousness in the region on the need for multidisciplinary approaches to care, and to the concept of personalised care where treatment is tailored to each patient. This is based on the type of cancer including the unique tumour characteristics, patients’ age and comorbidities and patients’ preferences. We need a multidisciplinary approach where we bring together all these skilled clinicians to create the best treatment plan for that particular patient.
It also helps to foster shared decision-making. It is important to have a well-informed patient whose wishes have been acknowledged and incorporated into the treatment plan as it is a journey we help to support alongside our patients. It is critical to provide an understanding around what to anticipate in order to reduce distress and uncertainty and to encourage adherence to therapies.
As part of that we have developed a multidisciplinary breast clinic. The team includes a medical oncologist, a surgical oncologist and the radiation oncologist. We have the patients come in with their families to ask questions, express their wishes and collectively develop with the clinicians a treatment plan they feel engaged and comfortable with.
From our preliminary experience since July 2021, we’ve had nearly 100 percent satisfaction with the process. The patients appreciate having that 30,000-foot view, and the opportunity to adjust their treatment plan before starting their care.
Education: It is important to train the next generation of healthcare workers to recognise the signs and symptoms of cancers; particularly the primary healthcare providers who are the gateway to accessing care.
We also need to educate the public, as at least 30-50 percent of cancers are preventable through simple diet and exercise measures. We know cancer in our region affects people in their prime years of productivity and it is much less costly when treated early. It is time to view health as an economic investment!
Leading change: There’s a key role for workforce advocacy. As a broader health community we need to collectively push for change in whatever sphere we’re in, whether at clinic or policy level, that will result in better outcomes for our patients.
Why did you choose to work at the Aga Khan Hospital?
I have worked here in several capacities at the university, as a medical officer, a surgical resident, an instructor and finally as faculty. From the outset the appeal was the underlying ethos of developing health leadership for East Africa by espousing the tenets of evidence-based best practice and regional impact. It resonated with the underlying question most of us health workers have: How can I develop and use my skills to make a difference?
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What has it been like being the first woman in your field?
Being the first female breast surgeon in Kenya carries increased responsibility but I am grateful for that privilege. With being the first, in any position, there is additional pressure on yourself to ensure that you are not the last. It is important to mentor and support more women in surgery to ensure a diverse health workforce with improved outcomes for patients.
When I did my training, female surgeons were rare. In the last eight or so years there has been exponential growth across all specialities, which is amazing. We now have a few more female breast surgeons and many more in training or developing an interest in the speciality!
Representation matters. In sub-Saharan Africa, women form about 70 percent of the health workforce but with significant underrepresentation in certain specialities and leadership positions. For instance, data from the West African College of Surgeons in 2015 showed that out of about 5,000 registered surgeons, less than one percent were female.
Women do have a unique role to play in health care here, including reducing some of the socio-cultural barriers in our communities that women face when accessing care. Data shows that women are more likely to adhere to clinical guidelines and to have a more collaborative approach to health management, which is important for team building and community engagement. If you look at the recent article in Nature on female African scientists, we see that women are more likely to engage in research that directly involves communities and impacts their societies. It is not an argument of one gender over the other, it is about how we bring together our collective skills and perspectives to create a diverse workforce that helps to improve patients’ experiences in health systems across Africa.
What has been your experience of mentoring?
It’s been a privilege to mentor. I have had incredible mentors and as a healthcare professional there’s always a responsibility to nurture the next generation of healthcare providers. COVID has exposed general fears and concerns, creating a global sense of uncertainty and disillusionment. How do we encourage resilience, in the workforce as well as the system?
Nine out of 10 people globally have no access to safe surgery and this is certainly the case in sub-Saharan Africa. How do we equip women with the skills to provide transformational leadership in their spheres of influence, whether at a policy level, as a hospital administrator or surgical team leader, or in a local clinic?
That’s why I helped to co-found the Pan African Women's Association of Surgeons (PAWAS).
How does PAWAS work in practice?
PAWAS is a continental network of sisterhood, from Cape Town to Cairo. It involves female surgeons at different career stages and enables us to interact and address different concerns. It is an educational platform and we have so-called “gory Wednesdays”, where everyone gives their input into difficult clinical cases. We discuss concerns that cut across all aspects of care and address common health worker concerns such as dealing with burnout. That sharing of support helps people recognise that they are not alone.
We are pleased to have, in collaboration with AKU, run the first oncoplastic surgical training in East Africa. We recently helped support a surgical preceptorship by the newly formed Kenya Association of Breast Surgeons. We have recently completed our first successful cohort of research mentorship run in partnership with AuthorAid and are looking forward to running our next cohort later in the year.
What advice would you give junior colleagues?
First, there’s no substitute for hard work. Whatever you want to achieve in life, put in the time, acquire the skill and engage in repeated activities that build your skill set.
Second, surround yourself with people who share a common vision. Get a mentor, maybe several, each with a different skill set, who will help you to realise your goal.
Somebody once said that if you’re the smartest person in the room, you’re in the wrong room, because you should be constantly aiming to grow and learn. Be willing to learn and have a humility that comes with appreciating new things. Some of the best lessons I’ve learned are from my younger colleagues, or from patients.
Find your passion. It’s not just sitting on a branch waiting to be plucked, you have to do and try a number of things before you find what resonates most with you. But do something, because you have an interest in it, not just for the money. If you’re going to be up at 3am, you’d better be doing what you love!
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You epitomise success to many – but what does success mean to you?
What success means to me is walking a patient through their entire cancer journey, from being the first port of call when they come in with a lump, to seeing them safely through all their therapies over to completion of their care.
We celebrate the little triumphs along the way, the last cycle of chemo, the complete healing of surgical wounds, the last radiotherapy session, simple things like first hair regrowth and ditching scarves, to finally being able to wear nail polish again, the occasional tears when the cancer throws an unexpected curveball and we are scrambling to recalibrate, and then redefining the new normal with the help of the team. It is the shared humour over a prosthesis slipping out in the middle of a “killer” presentation due to overenthusiastic waving, and to having developed the resilience to have a good laugh about it (and yes…she got the deal!).
As the first clinician the patient sees at diagnosis, we have the privilege of instilling hope into our patients at their most vulnerable moments and to ensuring that it continues throughout their care. It is always gratifying when we reach the end of a cancer journey. That’s when we get to put up the scoreboard and finally say “science 10, cancer zero”. That’s what keeps me going!
