Date: 30th September 2024 | Issue #2
Cancer is a disease with diverse epidemiology and characterized by uncontrolled growth of cells that can invade beyond their primary organ and spread to distant organs. It is a genetic disease that is caused by changes in genes that control cell growth and multiplication. In Kenya, cancer is the third leading cause of death (7% of deaths per year), after infectious diseases and cardiovascular diseases placing a great burden on families, communities, and the health system. According to GLOBOCAN, in 2022, Kenya reported an annual incidence of cancer of 44726 with 29317 cancer-related deaths. Breast cancer is the most common cancer at 16.2%, followed by cervical cancer (13.1%), prostate cancer (8%), esophageal cancer (7.5%) and colorectal cancer (6.9%). Projections from Kenya’s Ministry of Health suggest that from 2028, there will be more than 58000 new cancer cases diagnosed annually. However, data on the prevalence of first degree relative cancers in Kenya remains undocumented.
Cancer affects Kenyans of all ages and socio-economic backgrounds but has a disproportionate effect on the most vulnerable groups. As in many low- and middle-income countries (LMICs), 70-80% of cancer cases in Kenya are diagnosed at an advanced stage, when treatment options are limited and families make huge sacrifices, often with poor results. Late diagnoses of cancer in Kenya are attributed to limited awareness, inadequate diagnostic facilities, under-resourced treatment facilities, high cost of treatment, and systemic poverty. Less than 20% of Kenya’s households have health insurance, trapping these families in dire financial fixes forcing them to borrow, selling assets and Whatsapp-initiated fundraisers to meet treatment costs. Behind each cancer, is a person and a family struggling to cope with the medical and socioeconomic consequences of this disease. There is a need for more comprehensive counseling and access to genetic testing; recognizing the added clarity it would bring to these families’ risk of cancer.
When a family member is diagnosed with cancer, shock, fear, disbelief, and numbness are some of the emotions that close family members may experience. Households with a cancer patient face many difficult choices often taken in a situation of physical pain and great uncertainty about the treatment outcome and survivorship. Patients and family members are forced to decide about treatment modalities, whether to sell assets or take out loans, caregiving and cutting back on routine spending. The choice of treatment is particularly sensitive, as both under- and over-treatment are risky and costly in diverse ways. At times there is lack of proper communication from health care providers leading to confusion and anxiety, which impedes timely decisions. Mixed messages delays health-seeking behavior as well as fueling health care costs as patients and family members consult multiple providers. Families affected by cancer are often paralyzed by emotional distress, uncertainty, and lack of clear information around the consequences of different options. In some circumstances, a decision must be made quickly due to a deteriorating health situation; hence, access to accurate information is critical.
Family and friends play a critical role in supporting cancer patients and hence need to be well-informed. They help patients make critical decisions about whether to pursue treatment, which facility to access, how to cope with the financial costs, and the available health insurances. Patients with well-informed, strong, functional family structures, collectively make decisions about financing and fundraising. Well-intentioned family members and friends, who are not fully informed, can lead patients in the wrong direction; hence, it is important to raise awareness more broadly beyond health care professionals. Socio-economic analyses of the effect of cancer reveals economic losses due to lost wages, sold assets, and in some cases growing debts, as well as significant spending on cancer care.
Families where breadwinners are engaged in formal employment and benefit from employer-provided social welfare schemes are better equipped to cope with the economic burden. Likewise, families with assets such as savings, land, livestock, and real estate are in a position to cater for urgently needed diagnostic procedures, costly medications, and expensive treatments in private health facilities usually unavailable in level 1-3 facilities. By contrast, families with breadwinners with limited assets and no health insurance often struggle with mounting debts and intergenerational consequences on household finances, mental health, and children’s well-being.
Fear of stigma from a cancer diagnosis (especially for reproductive cancers) may lead patients not to discuss their conditions or to seek health care. In some socio-cultural settings, reproductive cancers for both genders are perceived to be a “divine punishment for acts of infidelity.” Additionally, embarrassment related to menstrual bleeding causes female patients to hide their condition and delay seeking care. While many people may want to help, it is sometimes best to be in a safe place with authentic, compassionate, non-judgemental people who have “been there” and can offer reassurance, companionship, and practical support.
Children living with a parent with cancer always find their social and interpersonal relations change. They may exhibit acting-out behaviors, emotional distress, and physical pain, which affects their wellbeing. In addition, adolescents may be more vulnerable because they are at a more advanced developmental stage with more cognitive abilities than younger children. Regardless of the prognosis, it is crucial to talk with children openly and honestly. Adolescents and teens may reject talking about the situation and seem withdrawn. It doesn’t mean they’re not interested or don’t care but simply need more time to process information.
Dr. Tyrus Swaya is a researcher at Integrated Cancer Research Foundation and a Lecturer of Medical Laboratory Sciences.