Edwine, Kenya
INTRODUCTION
In the heart of Migori County in Kenya, where the tranquil shores of Lake Victoria meet the teeming life of Sori Bay, a family is still mourning the loss of their loved one several months after he was laid to rest. Ernest Ayoma, a humble bus conductor whose life was marked by milestones of quiet triumphs among his community, also stood as a pillar of strength for his family.
However, in June 2023, Ernest's life journey took an unfortunate turn when he was diagnosed with stage IV lung cancer—a diagnosis that hit his family like a ton of bricks. What began with symptoms of pleural effusion would lead to Ernest’s long battle with a relentless adversary all the way to his grave. The journey through several diagnostic procedures, chemotherapy and unexpected twists of emergency radiotherapy, paint a grim picture of a physical and emotional journey that defined his battle against cancer.
Amidst the treatment attempts, Ernest's family faced not only the emotional toll of witnessing their breadwinner succumb to effects of the disease like convulsions but also the heavy financial burdens that accompanied his palliative care. With limited resources to lay their hands on, the family navigated the labyrinth of medical bills and loan repayments, some of which they are still struggling to settle.
Ernest's battle against cancer is not merely a tale of personal strife but also mirrors the broader realities of Kenya's healthcare system on the citizens. In a country where the health docket is under-budgeted, access to affordable and comprehensive cancer care will remain vague elusion for majority of Kenyans. Families like Ernest's continue grappling with the harsh realities of a system stretched beyond its limits and in which cancer treatment is a privilege rather than a right.
Compelled by the desire to shed light on these systemic injustices in the health sector, I share Ernest's story to raise awareness about the plight of cancer patients in Kenya and to advocate for meaningful positive change. Through his journey, I sound a clarion call for urgent need for improved access to quality healthcare that honors the dignity of every citizen it serves, the expansion of public healthcare facilities and increased funding for cancer treatment.
EARLY SIGNS AND DIAGNOSIS: A RACE AGAINST TIME
The onset of Ernest’s journey with cancer began with whispers of fatigue that gradually grew into deafening cries of distress characterized by shortness of breath. He could struggle to catch his breath while navigating the familiar streets he once roamed with ease. It is at the realization of these early symptoms that he knew something was amiss.
He decided to seek relief from this escalating discomfort and went to St. Camillus Mission Hospital to seek medical attention. A CT scan on 26th May 2023 revealed deposits of fluids in his right lung, leading to a diagnosis with pleural effusion- an indicator of the storm that lay ahead. It marked the beginning of the battle of unseen adversary lurking within him.
Despite his initial diagnosis, Ernest and his family would later encounter obstacles that tested their resolve and resilience. After tapping the fluids from his lung, the doctors at St. Camillus Mission Hospital referred him to Homa Bay County Referral Hospital where further tests were conducted to find out the origin of the fluids. Despite several tests, the results did not reveal anything prompting the doctors to recommend further diagnosis at Moi Teaching and Referral Hospital (MTRH). These referrals stretched the diagnostic process over several weeks with each stage of referral characterized by long queues, red tape, and the sheer complexity of navigating the healthcare system.
Ernest and his family saw the window of opportunity for early intervention close right in front of them with each passing day, leaving them with the streak reality of a diagnosis delivered too late! However, it was not until the end of June 2023 that Ernest and his family received the devastating news: Ernest had Stage IV Lung Cancer, which had spread to parts of his brain. The delays in diagnosis had allowed the disease to advance thus limiting treatment options and diminishing Ernest’s chances of recovery.
As Ernest and his family went about the limited treatment options available, they found solace in prayer, drawing more strength from their faith and family bonds of love. This went on albeit beneath the façade lay strong emotions of fear, anxiety and uncertainties of the future.
TREATMENT JOURNEY: NAVIGATING THE STORM
Ernest's battle against cancer began with a series of treatments aimed at thwarting the relentless advance of the disease. Following his diagnosis, he began chemotherapy sessions at MTRH's Chandaria Cancer Center. The side effects of chemotherapy on him were swift, characterized by significant weight loss and the distressing loss of hair. After undergoing six sessions until late November 2023, a scheduled review in January 2024 took a sudden turn when Ernest collapsed in the consultation room. This prompted an emergency radiotherapy with the doctors recommending 10 sessions as an in-patient. Radiotherapy on the other hand brought with it loss of appetite, profound fatigue, and sundowner dementia. Moreover, as Ernest’s condition deteriorated, his ability to communicate waned, leaving him trapped in a silent world of pain and suffering. Amidst the turmoil, there were no clear victories to celebrate.
In his final days, Ernest’s physical condition deteriorated rapidly, and the once vibrant man known to his family had become a shadow of his former self. His once robust frame had withered and his memory faded into the ether. The tears that welled in his eyes were a clear evidence of a man writhing in agony, but despite his family’s pleas to the healthcare providers, it seemed as though they had resigned themselves to his fate.
Throughout the treatment journey, Ernest had the support of his family which rallied around him, pooling together their limited resources to ensure he received the care he desperately needed. As a matter of fact, Ernest’s treatment journey was a crucible of both suffering and sacrifice, leaving his family impoverished in many ways. The systemic flaws of Kenya’s healthcare system cast a long shadow over Ernest’s treatment odyssey, impeding his access to timely care.
In the end, the cancer treatment endeavor revealed the sordid underbelly of a healthcare system ill-equipped to meet the needs of majority of the citizens. The Chandaria Cancer Center at MTRH, where Ernest sought treatment, serves vast swathes of patients from Western, Nyanza, and Rift Valley regions. The result is interminable queues and agonizingly long waiting hours. For patients seeking chemotherapy, the wait can go a long way stretching to days, leaving patients languishing in uncertainty and some going back unattended.
ACCESSIBILITY AND AFFORDABILITY OF CANCER TREATMENT: A DESPERATE STRUGGLE
In Kenya, accessing cancer treatment is a harrowing experience marked by insurmountable barriers. For less privileged families like Ernest’s, residing in far-flung rural areas away from specialized Cancer facilities, the quest for treatment is a costly endeavor fraught with financial strain. In his case, he was compelled to travel a long distance of 250 km to Eldoret town to seek treatment. The exorbitant cost of transportation for such distance, given the state of the economy at the time, imposed an additional financial burden, pushing his already struggling family deeper into the throes of poverty.
The truth of the matter is that the cost of cancer treatment in Kenya is staggering, far beyond the reach of citizens. The few private hospitals that can provide cancer treatment shoot their fees through the roof, pricing out the vast majority of Kenyans. Even public facilities, such as MTRH, levy treatment fees that are not affordable for those living below the poverty line.
The National Hospital Insurance Fund (Now rebranded as Social Health Authority), which ought to offer a glimmer of hope for patients by providing a comprehensive coverage for cancer treatment expenses, had a cap on the total amount spent on each patient at 600,000 shillings. After which, the patient is either left grappling with out-of-pocket expenses -If they can afford it- or left to die. Furthermore, the newly established Social Health Authority continues to grapple with significant challenges in registering patients. The system remains under development, leaving many unregistered individuals to cover medical expenses from their own pockets.
CALL TO ACTION: RALLYING FOR BETTER CANCER CARE
As we reflect on Ernest’s courageous battle with cancer and countless other Kenyans alike, we make a clarion call to unite and take action to improve cancer care and give support to patients and families across the country. We invite Kenyans to support and advocate for policies that prioritize the well-being of cancer patients and their families.
Whether through volunteer work, donations or spreading awareness, let us all lend our support to organizations and hospitals like Faraja Cancer Support, Kenya Cancer Association, MTRH’s Chandaria Cancer Center and KNH Cancer Treatment Center, to name a few, which work tirelessly to provide assistance and resources to those in need. When we join hands, we can ensure that no one suffering from cancer walks this journey alone.
Finally, let’s advocate for adequately staffed, well-funded and decentralized cancer facilities to enhance cancer research and treatment. Together, we can create a brighter future for cancer patients and their families, where hope and support flourish.