“We need to enhance Universal Health Coverage (UHC). Let’s enhance more resources especially in palliative care.” H.E Hon. Prof. Anyang’ Nyong’o Governor for Kisumu County.

Palliative Care is critical in the role of global cancer care although many people living in low and middle-income countries are unable to access or afford it. The international pandemic has made it even more difficult to access palliative care across the world.

The World Bank with financial support the Access Accelerated Initiative has prepared a report on the Economic and Social Consequences of Cancer in Kenya: Case Studies of Selected Households. Please find the report here. The report uses a case study approach to shed light on the patient journey, and better understand the direct and indirect costs families face; the difficult decisions and choices they need to make. The report also addresses the socio-economic and psychological implications of having a family member afflicted by cancer.

Sally Kwenda, a cancer survivor said, “I almost died of cancer in 2007. I didn’t have any symptoms. I went for a checkup and then went to two other different facilities just to be sure. I was told I needed to undergo a hysterectomy. In 2010, I was diagnosed with colon cancer. I underwent surgery but in 2011 cancer had progressed to the rectum. I have been using a colostomy bag since the surgery.”

According to the report, the burden of non-communicable diseases (NCDs) in Kenya is rising rapidly and now accounts for more than 50 percent of all hospital admissions, and nearly 30 percent of total deaths. Cancer is the second-leading cause of NCD mortality in Kenya, with its incidence nearly doubling between 2008 and 2012. The illness affects Kenyans of all ages and socioeconomic backgrounds and presents an increasing risk as age progresses.

Most cancer cases are diagnosed at an advanced stage when treatment options are limited, leading to high out-of-pocket (OOP) spending, poor prognosis, and high fatality rates. Households not covered by health insurance are among the most vulnerable to health shocks, often forced to adopt coping strategies like borrowing or selling assets, with potentially long-term ramifications on livelihoods.

“Cancer care should be comprehensive. This includes prevention, palliative care, and pain and suffering. Palliative care comes in to relieve pain and discomfort to those who have a serious illness from diagnosis to any stage of the disease. Every Kenyan has the right to quality care.” Dr. Zipporah Ali – Executive Director, Kenya Hospices and Palliative Care Association (KEHPCA).

Palliative care also known as comfort care focuses on easing symptoms and pain. It also helps in managing the stress of cancer by helping people with the emotional side of the disease. Palliative care can help guide you when it’s time to make decisions about your treatment. It can also help out family and friends who are supporting you during this time.

According to the report, many cancer patients struggled with out-of-pocket spending, choosing to either mobilize funds from family and friends or to defer tests/treatment until the conclusion of the National Hospital Insurance Fund (NHIF) waiting period due to delayed enrollment. NHIF membership is critical to accessing treatment and care. Timely enrollment in the NHIF allows patients to seek care at an earlier, more treatable stage. Some civil society organizations subsidize NHIF membership fees.

“NHIF needs to increase the benefits package. The journey to access care can be lonely and difficult.” Miriam Schneidman, Lead Health Specialist World Bank.

The report states further, all case study participants confirmed that decisions made by families of cancer patients are fraught with emotional distress, uncertainty, and lack of full information. In some cases, especially when choosing between a public or private health care provider, or whether surgery should be performed, a decision must be made under pressure due to a deteriorating or critical health situation. This included decisions about which providers to use (public vs. private, traditional healers, pharmacies); how to mobilize funds (i.e., fundraising, liquidating assets); and which treatment options to pursue. Children, even when they are mature enough to make decisions for themselves, are often afforded limited autonomy about their own treatment with family members often making decisions on their behalf.

People with cancer may receive palliative care at any time from the point of diagnosis, throughout treatment, and beyond. Many patients and their caregivers wonder about the next steps when cancer is very advanced and treatment is no longer working or has been stopped.