By Liza Ramrayka, social justice journalist whose work has appeared in The Guardian, The Times and News Deeply. Photographs by David Macharia.
Breast cancer is one of the leading causes of death in Kenya. Barriers to accessing healthcare include poor diagnosis and inadequate funding. Roche is working with the Kenyan government on innovative and sustainable solutions.
Cancer is the third highest cause of morbidity in Kenya. Breast cancer is the second most common type of cancer in the country, with women under 50 accounting for 50% of those presenting. Of the estimated 5,000 people diagnosed with breast cancer each year, around 2,000 will die from this disease. Many of these women are mothers or carers, employees or small business owners so the impact is felt on their families, the wider community and on Kenya’s economy.
Fauzia Aboud had recently given birth to her fourth child and was breastfeeding when she noticed that something wasn’t quite right. At first the 42-year-old, who was living in Tanzania at the time, dismissed what she’d found as a cracked nipple. Nothing to worry about, her sister reassured her. But when the discomfort persisted, Fauzia’s sister knew it was time to seek advice. One doctor's appointment led to another and finally to a specialist who recommended a scan and biopsy tests that confirmed her breast cancer.
Living away from the support network of her family in Kenya, and with three children and a young baby to care for, Fauzia admits that the diagnosis in May 2016 and subsequent mastectomy surgery was “overwhelming.” So when her doctor in Dar es Salaam recommended returning to Kenya for follow-up treatment, Fauzia knew that she needed to move home and let her family help her navigate the next stages of this confusing and difficult journey.
How would she pay for the cycles of chemotherapy and radiotherapy that she needed? Who could she turn to for support on managing the side effects? And how would she be able to make the eight hour bus trip from Mombasa to Nairobi every few weeks to receive her treatment?
Listening to Fauzia and her sisters talk about these concerns brings into sharp focus the myriad of challenges that people with cancer in Kenya face every day—from recognising symptoms and getting an early diagnosis, to accessing appropriate treatment.
David Makumi is chairman of the Kenyan Network of Cancer Organisations (KENCO), the national umbrella body for cancer support groups and patient groups. He reels off some of the many complexities along the patient journey. For instance, a woman may discover a lump but lack awareness of cancer symptoms and not feel pain so will do nothing. If she does follow up, her doctor might not suspect cancer because of a gap in professional knowledge. If referred for a biopsy, she might not have the money to pay for it because her children’s school fees are due. And, when she eventually has the biopsy, the results may get lost so she has to start the process again.
“Then, if the patient finds out it’s cancer, the feeling is that cancer equals death because they don’t have enough information,” explains Makumi. “If there’s a district or county surgeon, they may do a mastectomy. The patient is booked to go in four weeks—she has to go back home, figure out costs, break the news to the family.”
After surgery, the patient may be referred for chemo and show up for two cycles then stop because she can’t afford to continue and doesn’t know how to access funding. Makumi explains: “These are primarily social issues, not medical issues; that’s where we come in. Information is an important piece that impacts on the way patients complete their treatment.”
It’s 9am on Wednesday morning and the cancer centre at Kenyatta National Hospital (KNH) in Nairobi is already crowded. There are no empty spaces on the benches outside the chemo treatment room and its rows of hoods and chairs. Women and children stand where the seats don’t exist. Some people will have traveled hundreds of kilometres for treatment but may not even get seen today.
Upstairs in the cancer clinic, lines of men and women snake along the corridors, around corners and up the staircase as patients check in for open-door appointments at the public hospital, the largest referral facility in east and central Africa.
Non-communicable diseases (NCDs) such as cancer are a growing burden in Kenya, accounting for 31% of deaths in in 2015 and more than half of in-patient admissions.
The prevalence in Kenya of communicable diseases such as HIV, malaria and TB has led to the government channeling health spending towards these areas, with successful public health campaigns and outcomes. However NCDs have not been similarly prioritised until fairly recently, resulting in a cancer treatment and care infrastructure that struggles to meet the needs of Kenyans who develop cancer.
According to Robert Makori, assistant chief nurse at KNH’s cancer treatment center, the scenes at the hospital are the new normal. Makori sees 15 new patients a day so around 60 per week. An average 60-70 people are seen on the centre’s chemo days (Monday, Wednesday and Friday) between clinic hours of 8am to 4:30pm. From Monday to Friday, around 120-130 patients come in every day for radiotherapy.
Staff and clinic hours struggle to cope with patient volume, admits Makori: “KNH is the only public hospital with both radiotherapy and chemotherapy, and many of our patients have to travel a long way for treatment,” he explains. “A person could be given an appointment but if they’re not feeling well, they can’t have their treatment and may not get seen that day.”
To address this escalating burden, the Kenyan government last year published the 2017-2022 National Cancer Control Strategy (NCCS) which builds on the work of the government’s first cancer strategy launched in 2011. It aligns with the Kenya National Strategy for the Prevention and Control of Non-Communicable Diseases 2015-2020 and with the government’s Kenya Vision 2030 commitment to improve the quality of life of all Kenyans.
More broadly, the NCCS is a response to the Sustainable Development Goal (SDG) target for 2030 of reducing premature mortality from non-communicable diseases, such as cancer, by one third.
Designed as a road map to how Kenya addresses cancer control, the NCCS has five focus areas: prevention, early detection and screening; diagnosis, registration and surveillance; treatment, palliative care and survivorship; coordination, partnership and financing for cancer control; and monitoring, evaluation and research. The strategy recognises that public-private partnership and collaboration with the non-health sector is pivotal to this work.
Financial access to cancer treatment is one of the biggest barriers to successful outcomes. Kenya does not yet have universal health coverage (UHC) although affordable healthcare for all is one of the government’s ‘Big Four’ economic development priorities.
Most Kenyans live on just a few US dollars a day, based on figures from the government’s latest economic survey. With an estimated 75% of the population not covered by a public, private or community health insurance scheme, paying for basic healthcare is already a challenge and paying for treatment for a life-threatening disease is even more of a stretch. According to the World Bank, nearly one million Kenyans fall below the poverty line because of health care related expenditures.
The state-run National Hospital Insurance Fund (NHIF) offers insurance to anyone over 18, with monthly payments based on income and starting from 150 KS (USD 1.50). Coverage was recently extended to provide 25,000 KS (USD 250) per patient towards cancer care.
But with treatment more likely to run into millions of Kenyan shillings and private finance interest rates of 20%-30%, many people with cancer have to rely on the Kenyan concept of ‘harambee’–community-self-help—or crowd funding to cover their costs. Alternatively, they go without treatment.
Makori at KNH comments: “Most people we see don’t have coverage so they start treatment but then 40% don’t finish because of lack of finance. It’s a challenge for our patients.”
Rose Wambui was just 32 years old when she was diagnosed with breast cancer. The mother of two underwent a full mastectomy followed by eight cycles of chemo then 25 of radiotherapy. “It was quite a shock to get cancer at my age,” explains Rose, who had two children aged under eight when she was receiving her treatment.
When Rose’s oncologist suggested she pursue hormone therapy for her HER2-positive cancer, there was more worry: “It was so expensive and I knew that I couldn’t afford it.” It was then that her oncologist referred her to a special programme that KNH had set up to offer women free HER2-positive treatment. “I was overjoyed. I had to wait just one week then I started the treatment,” says Rose. “To have access to that treatment for free means a lot to us cancer patients.”
In Mombasa, Fauzia had begun her HER2-positive treatment privately but had to stop when her NHIF funding ran out. Family and friends pitched in to help her continue treatment and she even had to take out loans, but all fell short of her treatment costs. Finally, Fauzia’s sister Warda heard about the KNH programme and encouraged Fauzia to participate.
“I had been doing research and I kept thinking, ‘How can I lose my sister because of the cost of a drug?’ We thought it was the end of the road but then we heard about the programme and our imaginations started running wild,” says Warda. Through the KNH programme, Fauzia was able to complete the remainder of her treatment.
Fauzia and Rose are among the 82 women to date who have been able to participate in this programme at KNH thanks to an innovative public-private partnership formed in 2016 between Kenya’s Ministry of Health and Roche Kenya. The partnership, launched by First Lady Margaret Kenyatta, is designed “to improve access to timely and precise diagnostic services and tailored cancer treatment to make cancer therapy much more effective”.
As part of this partnership, Roche and the Kenyan government have a memorandum of understanding to jointly cover the costs of HER2-positive treatment at public institutions (designed to be a stop gap measure until further NHIF or other government funding is possible).
Andre Mendoza, country manager of Roche Kenya and East Africa says that the partners had to take a step back and develop a holistic approach to improving breast cancer treatment and care in Kenya. “Public-private partnership was part of the government of Kenya’s strategy but the infrastructure was not ready,” he says. “The puzzle in front of us was how can we solve affordability issues—and everything else—through partnership so in the end patients can have access.”
An estimated 80% of cancer cases in Kenya are diagnosed at late stages due to low awareness of symptoms, inadequate screening and poorly structured referral facilities.
Dr Andrew Gachii, head of laboratory medicine at KNH, says: “As institutions, we’ve been grappling with infectious diseases and now all of a sudden we have this huge cancer burden. The unfortunate thing is that many patients come in late—stage 3 or 4—so some are just coming in for palliative care.”
To help improve early diagnosis of cancer, and as part of the overall partnership programme, Roche funded the installation of an immunohistochemistry analyzer at KNH. The machine is capable of advanced testing for seven types of cancer. Roche is also funding reagents for breast cancer testing at the 2,200-person facility.
The diagnostic equipment enables KNH to test whether a patient’s tumour is hormone responsive or non hormone responsive, indicating suitability for standard of care treatment for HER2-positive breast cancer. This is standard of care testing, now available for the first time in a public facility in Kenya. It is enabling patients to have a faster and much more accurate diagnosis.
With national screening guidelines still some way off, Dr Gachii says the partnership is helping KNH to improve diagnostics by providing more precise results but without the 10,000 KS (USD 100) fee charged by private facilities offering screening. He adds the cost of testing has been reduced to around 6,000 KS (USD 60): “Before we had the machine, less than 20%—perhaps two or three out of 10 patients—could afford tests. So 80% couldn’t get proper diagnosis to continue treatment.”
The Beth Mugo Cancer Foundation (BMCF) was set up in 2016 to promote access to information, detection and treatment of breast, cervical and prostate cancer. The organisation was founded by politician Beth Mugo, who in 1997 became the first woman to be elected to the Kenyan Parliament. In 2011, Mugo was diagnosed with breast cancer. Her initial response was to keep her disease a secret because of the stigma associated with it; eventually she began to discuss her cancer openly, attracting media attention and encouraging women across Kenya to get check-ups.
As part of Roche's commitment to improving access to healthcare in Kenya, the company signed a memorandum of understanding with the BMCF in October 2016. Aimed at supporting people with breast, cervical and prostate cancer in Kenya, the agreement involves Roche providing training for BMCF employees on the subject of cancer and helping the foundation establish international links with similar organisations.
Building healthcare professional (HCPs) capacity is another priority. Kenya has a population of 45 million people, yet it only has nine medical oncologists across its four cancer treatment facilities. Makori at KNH comments: “We still have inadequate personnel… it’s not enough to manage the entire population.”
If the right structures, equipment and doctors could be deployed to every county, we could address the [cancer care] problems squarely.
Under the partnership with the Kenyan government, Roche is funding training scholarships for five medical oncologists and six oncology nurses, almost doubling the capacity of HCPs for cancer in the country. The training also includes support for two two-week surgical preceptorship programmes in biopsy techniques. The Ministry of Health has agreed to support and retain HCPs from scholarships and expand oncology treatment by increasing number of treatment centers and units.
Dr Angela Waweru is a clinical oncologist at The Nairobi Hospital (TNH), a private hospital, but is also on a six-month specialist attachment at KNH’s cancer clinic. Before joining TNH, Dr Waweru was employed by the United Kingdom’s publicly-funded National Health Service. She believes there is scope for further partnership between public and private cancer care facilities in Kenya to strengthen capacity. “I think that there’s opportunity for more. We do NHIF applications for patients at KNH and we’ve been treating the brachytherapy patients because the machine at KNH is out of action. Patients are waiting months for what we could do tomorrow.
TNH houses the Cancer Treatment Center, which offers a comprehensive service from diagnosis and surgery to treatment and rehabilitation. The center's radiation treatment unit opened in 2012 and includes radiation therapy machines and a high dose brachytherapy unit. In addition to offering pro bono support to KNH with radiation treatments, lead radiotherapist Fredrick Asige says the center also offers free chemotherapy treatment to KNH patients with leukemia on alternate Saturdays as part of the hospital's CSR programme.
TNH has also partnered with the NGO, Partners in Health (PIH) to offer free treatment to cancer patients in Rwanda. Under the agreement made in 2016 and supported by the Rwanda High Commission in Nairobi, PIH is funding the discounted TNH treatment over two years. Around 100-150 people are expected to be received radiotherapy treatments at TNH.
According to Mendoza at Roche, this approach to strengthening infrastructure began by listening to stakeholders to identify and fully understand the access hurdles to cancer treatment. “When we first started, the patient journey to get any sort of treatment was around nine months. The patient might get to another stage of cancer over this time and it might be too late. But with all these interventions, it’s now four months and going down. It is an ecosystem approach; you have to address all of the elements, or the patient will never get to the point of treatment.”
Having champions like the First Lady and Senator Beth Mugo were key to opening doors and keeping momentum going, says Jackie Wambua, stakeholder relations and health policy manager, Roche Kenya. Wambua reached out to a range of stakeholders over two and a half years from 2015 before the government agreed to partner with Roche on breast cancer treatment. From early morning meetings at the Ministry of Health to listening to patient group concerns via KENCO, she joined the dots to help make the programme a reality.
“We had committees with government, Roche and KNH on what protocols do we need, what guidelines do we follow,” she explains. “We had to look at processes that weren’t there and set up ways for the patient to navigate from casualty or from referrals outside city.”
Against a background of devolution of health services in Kenya, with counties being given a bigger responsibility in prioritising and allocating resources, Kenya’s cancer strategy provides a framework for planning and implementing cancer prevention and control interventions.
Makumi at KENCO advocates for screening to be done at county level via outreach clinics once or twice a month. Makori at KNH would like to see the government offer the private sector incentives to invest in healthcare and provide equipment so that people with cancer can have the same treatment without having to travel across the country.
Although breast cancer occurs in both men and women, more than 90% of cases present in women. Risk factors include gender (being female), family history, alcohol and tobacco use, being obese or overweight and exposure to estrogen hormones through contraceptives.
Makumi at KENCO also believes faith-based groups have a role to play as partners in spreading this message. “We looked at what worked with HIV and what changed the tide is when religious leaders got involved in talking about HIV in temples, in mosques, in churches, in the shrines, in the places of worship. When they started doing that then folks listened. So we want to craft specific cancer messages especially around prevention.”
Dr Tom Menge, chief pharmacist and deputy director, pharmaceutical services at KNH, agrees that cancer needs to be a public health priority. “Look at how the country dealt with HIV/AIDS—it was a concerted effort, declared a disaster and addressed issues of access,” he explains. “I believe that’s the direction that cancer is going.” He adds that the National Cancer Institute, currently in a formative stage, will contribute to this vision. “We worked on an amazing model for HIV; I keep wondering whether we can do same for cancer.”
Diya Melanoi Mohamed, another patient on the Roche/KNH treatment programme, wants to see more information about cancer treatment options. The 58-year-old and her husband, Farooq, had the support of their grown-up children to navigate her treatment. Farooq, who had recently retired when Diya was diagnosed with breast cancer, researched options and kept careful notes about his wife’s surgery, chemo and radiotherapy appointments.
But Diya knows not every patient will be as fortunate: “A lot needs to be done around education. Whether rural or in town, when you hear cancer, you think it’s a death sentence, it’s scary. But when you meet friends and talk freely about cancer, they’re surprised and realize you don’t have to be scared of it.”
The Kenya agreement is part of Roche’s Africa Strategy which began in 2015 and is working with local partners on a range of initiatives including strengthening healthcare systems, professional training and private health insurance with local companies. Markus Gemeund, head of Roche in sub-Saharan Africa, says the next step in Kenya is to find creative funding solutions. “The biggest challenge is funding and reimbursement. Cancer is cancer—it doesn’t wait for the economy to do well.” To this end, Roche is looking at what other creative funding mechanisms can be put in place until countries like Kenya have universal health care.
Back in Mombasa, Fauzia talks about reopening a hairdressing and beauty salon like the one she worked at before her cancer treatment. What would she wish for others who are newly diagnosed with cancer? “No-one should be afraid to reach out,” she says. “You will get help if you’re willing to look for help.”