In 2016, 50-year old Mary from Kilifi county in Kenya began experiencing heavy bleeding that continued for extended periods of time. Embarrassed, she hid the problem from her family for almost a year.
By the time she was accurately diagnosed with cervical cancer, she had visited multiple hospitals in Kilifi and Mombasa, had a battery of diagnostic procedures, and consulted several traditional healers. The family recalled overhearing doctors saying that “some patients can only be treated by God”. She ultimately succumbed to the disease.
The stories of cancer patients in many low- and middle-income countries are strikingly similar. Awareness and knowledge about cancer is often limited. Patients navigate health systems that are not well equipped to provide accessible, accurate and affordable care and experience lengthy delays.
They spend time and money to seek care, often at an advanced stage of the disease, when survival prospects are poor. Some struggle with stigma, particularly for reproductive cancers, such as cervical and breast cancer. Breaking this vicious cycle– of limited awareness, late health seeking behavior, and poor outcomes– is critical to tackling cancer, one of the leading causes of premature mortality and disability in low-and middle-income countries.
Today, cancer kills more people globally than HIV/AIDS, TB and malaria combined with a disproportionate share of these deaths in low- and middle-income countries. Newly diagnosed cancer cases jumped from about 14 million (2012) to 18 million (2018) and cancer deaths from 8.2 million (2012) to 9.6 million (2018), highlighting a growing global epidemic.
By 2030, it is estimated that there will be over 22 million new cases of cancer and nearly 13 million cancer-related deaths worldwide, with more than half of all new cases and two-thirds of cancer deaths occurring in poor countries which are least prepared to deal with the rising numbers.
The most common incident cancers and those causing deaths are associated with smoking, obesity, and sedentary lifestyles, and hence can be prevented or detected early, avoiding premature death and suffering.
Cervical cancer, for example, is a disease that is highly preventable and curable if caught early, with a push internationally towards its elimination. Cervical cancer is one of the most common cancers in women in low and middle-income countries.
In 2018, about 85 percent of all cases and deaths globally occurred in low- and middle-income countries, even though vaccination and early detection and treatment of precancerous lesions can effectively reduce incidence and mortality rates.
Breast cancer, when detected and treated early, has a very high chance of survival. Yet global disparities in survival rates are massive. A woman diagnosed with breast cancer in the United States has over a 90 percent chance of survival in contrast to a woman in Uganda who has less than a 20 percent chance of survival. Delays in breast cancer treatment of over three months have been associated with a more advanced disease stage at diagnosis and poorer survival, as health systems are ill equipped.
Poorly informed frontline workers
Provider knowledge remains highly variable and generally inadequate. In Cameroon a knowledge, attitude and practice study at two referral hospitals found that 50 percent of health professionals had weak knowledge, and 36 percent had poor practice of breast cancer screening and prevention.
In Ethiopia, over 80 percent of healthcare practitioners were aware of cervical cancer and prevention but over 60 percent had never performed any cancer screening. Even in an upper-middle income country like Brazil, there are persistent gaps in knowledge and practice.
Shortages of experts and infrastructure
Shortages of specialized personnel are pervasive, particularly in sub-Saharan Africa. There is only one pathologist per 500,000 inhabitants in sub-Saharan Africa versus one pathologist per 15,000-20,000 in the United States and the United Kingdom. There are also severe shortages of oncologists. In Malawi, for example, the ratio of new cancer cases per clinical oncologist is 15,000 compared to 137 in the United States.
The ratio of radiologists to inhabitants in sub-Saharan Africa (i.e. Tanzania 1:1.5 million; Uganda 1:1 million; and Kenya 1:400,000) in comparison to developed countries (i.e. Canada, United States, Europe: 1:50,000) also highlights stark disparities. A review of the state of surgery in sub-Saharan Africa found a severe scarcity of surgeons with less than two surgeons per 100,000 inhabitants.
Critical infrastructure for high quality cancer care is limited and often concentrated in a few urban centers. Less than 30 percent of low-income countries reported the availability of cancer treatment services compared to over 90 percent of high-income countries. Complementary high-quality cancer registry data to help plan and implement cancer control programs, are not available in most low- and middle-income countries.
Limited financial protection
Cancer treatment is costly with a very high risk of impoverishment from out of pocket spending. In South-east Asia, a study found that nearly 37 percent of patients incurred catastrophic health spending and a sizable proportion experienced economic hardships. This was highest in Malaysia (45 percent) and Indonesia (42 percent).
In sub-Saharan Africa, treatment costs are beyond the means of most people. For example, in Kenya, where insurance coverage remains low, curative breast cancer treatment in public facilities absorbs roughly 20 percent of annual income and more than 1.5 times the annual income in private facilities.
Glimmer of hope for cancer patients
The situation is not all doom and gloom. There are reasons to remain optimistic on this World Cancer Day. We should focus on creating a virtuous cycle that includes prevention and early detection in primary health settings, enhanced awareness and improved health seeking behavior, and cost-effective treatment. We need to adopt evidence-based approaches; support innovative service delivery models; and empower cancer survivors.
Expanding coverage of prevention and early detection
Efficient prevention and early detection policies and programs help reduce costs for health systems and individuals. For cervical cancer, the good news is that there is a vaccine that protects girls 9-14 years against the human papillomavirus (HVP), the most common viral infection of the reproductive tract, which has been shown to be safe and highly effective in preventing infections. In Australia, HPV rates among women 18-24 dropped dramatically from 22.7 percent to 1.1 percent between 2005 and 2015. In Rwanda, a remarkable 93 percent coverage rate for 11-12-year-old girls has been attained, using community health workers and local leaders to disseminate accurate messages about vaccine benefits and to tackle myths about infertility and promiscuity.
Screening and treatment of pre-cancerous lesions in women over 30 years of age represent cost-effective strategies that are being rolled out in several countries. These screenings allow pre-cancerous lesions to be identified at stages when they can be easily treated, and early treatment prevents up to 80 percent of cervical cancers.
Zambia has established a national cervical cancer screening program that serves as a model for other countries and involves use of the cost-effective visual inspection with acetic acid method, and telemedicine to reach women in remote areas and conduct quality assurance.
In El Salvador, the World Bank is supporting a pilot integrated service delivery program for the prevention, early detection and treatment of cervical cancer in collaboration with the Access Accelerated initiative.
In Ukraine, where breast cancer is the leading female cancer, a shift to earlier detection over the past 15 years has resulted in 76 percent of cases being detected at earlier stages (I/II) with first year mortality dropping to less than 10 percent.
Raising awareness and knowledge
Improved provider and patient knowledge will enhance the uptake of services and reduce drop outs in the cancer care cascade. Training front line health workers to provide accurate information on risk factors, to recognize signs and symptoms of cancer and promptly refer patients in need of care is critical.
In Malaysia, patients presenting with late stage breast cancer declined from 77 to 37 percent after a national drive to raise awareness. China is piloting strategies to increase breast cancer awareness and early detection, such as use of cancer survivors (ambassadors). Panama is implementing standardized training of primary health workers and shifting to greater use of needle biopsies for diagnosis.
Building on successful programs and addressing bottlenecks
Innovative service delivery models that leverage communicable disease platforms are being successfully rolled out in some countries. For example, Botswana, has a long-standing track record of integrating the “see and treat” cervical cancer screening strategy and cryotherapy procedure into its successful HIV/AIDS program, with support of multiple partners, including the World Bank. Similarly, in Kenya a chronic disease model, built on an HIV/AIDS platform focuses on early case finding, linkage to treatment, and task shifting, to improve detection and care of cervical and breast cancer with support of the World Bank and the Access Accelerated initiative.
Various diagnostic assessments have been produced to assist governments’ understanding and better address bottlenecks in cancer control programs. A World Bank study in Brazil identified persistent challenges in cancer care with wide disparities in access, breakdown in the continuum of care, and late stage diagnosis (38 percent diagnosed at stage III/IV).
In Ukraine, an analysis conducted with support of the World Bank in two provinces found that despite progress made, women were still lost at various stages in the screening, diagnostic and treatment cascade due to limited availability of equipment, treatment options and/or gaps in capturing cases in the cancer registries.
Supporting cancer patients
Empowering and encouraging cancer survivors, families and civil society groups to be partners in the battle against cancer will be important. Survivors can be articulate spokesperson for others during their cancer journey, sharing experiences and helping them to better cope with the disease. Civil society support groups and cancer associations in many countries have proven to be excellent advocates and a good sounding board for cancer patients and their families.
The patient perspective touches all of us in an important way and reminds us of the numerous challenges they face and of the opportunities to improve survival prospects. A forthcoming report supported by the World Bank documents the patient’s journey through the perspective of Kenyan patients. As a global health community, we need to work together with governments, private sector, and civil society, to promote early detection of cancer; to improve access to quality services; and to ensure financial protection from this potentially impoverishing disease.
Elizabeth, a 38-year old mother of two from Meru county in Eastern Kenya, was fortunate to benefit from treatment for cervical cancer and is now in remission. Her battle with cancer was riddled with difficulties but ended on a more positive note. We need more patients like her who beat the odds against this killer disease.
Names of patients have been changed to protect their identities