By Evelyn Makena
As dusk falls on a chilly Saturday evening, a middle-aged man lends his wife a hand as she takes the steps into an iron corrugated shelter for cancer patients located within the serene surroundings of Mwimuto, about 18 KM from the capital, Nairobi. She walks slowly and with difficulty. The discomfort of a radiotherapy session she underwent the previous day and the pain of a tumour in her mouth have taken a toll on her. For a month she has been undergoing chemotherapy and radiotherapy sessions consecutively at Kenyatta National Hospital after being diagnosed with mucoepidermoid carcinoma (a type of cancer on the salivary gland).
That the family from Karatina, Nyeri County located in the Central Highlands of the country – 151 KM from Nairobi – have a place to stay and eat for free while she undergoes treatment in the city comes from an initiative by a local Non-Governmental Organisation, Lady Hope Institute for Wellness. “I was touched by the tough conditions cancer patients put up with while searching for treatment in KNH,” says Veronicah Mwangi, Founder, LHWI.
Cancer is the third leading cause of death in Kenya with the annual incidence estimated at 47,887 in 2018 according to data by the Ministry of Health. Patients diagnosed with cancer are treated through surgery, chemotherapy, and radiotherapy. While chemotherapy and surgery are offered on inpatient basis, radiotherapy is only offered on outpatient basis. Additionally, KNH is the only public facility in Kenya equipped to provide radiotherapy meaning that many patients from across the country have to travel to Nairobi for the treatment that could last more than a month. Many patients receiving treatment on outpatient basis end up being hosted by relatives living in the city or paying for accommodation – an average of sh. 700 – 3000 per day- . “Those that cannot meet these costs end up sleeping on hospital corridors and benches while undergoing the aggressive treatment,” says Wilson Mosbey, a medical social worker, KNH.
LHWI, started in 2011 and has proven to be effective in providing support to cancer patients and ease their financial and psychological burden while undergoing treatment in Nairobi. They have hosted over 300 patients with many successfully undergoing treatment while hosted in a decent shelter, being provided with meals, having their transport costs catered for and receiving counselling. Patients who cannot access accommodation and cater for transport costs have poorer treatment outcomes. A 2015, a survey conducted by KNH in partnership with American Cancer Society (ACS) on more than 400 cancer patients receiving treatment at KNH, showed that 29 % of patients had missed or delayed treatment due to high transport and accommodation costs.
When Stanley Chege arrived in LHWI in 2019, his family was its wits end. He was frail and, on a wheelchair, and reeling from the effects of sarcoma- a tumor that occurs in the bones and soft tissues- diagnosed in 2013, treated but later recurred in 2018. “Earlier the problem was on my left leg but I underwent surgery and radiotherapy and had a metal plate installed on my hip since the cancer had eaten away the hip joint,” says Stanley. During the course of his illness since 2013, the family had sold off most of their property to cater for his treatment including over 6 acres of land , seven dairy cows and 30 sheep.
“Our resources were almost depleted. As a family we were desperate,” says Cyrus Kariuki, Stanley`s son. Cyrus heard about LHWI while stranded at KNH after being informed that Stanley could not be admitted to allow him undergo another cycle of radiotherapy. The family had resorted to renting a room in Nairobi`s Kangemi area for sh.3000 per month while Stanley underwent radiotherapy at KNH the first time in 2013 . But by the time Stanley was going for radiotherapy for the second the family had drained their resources.
Stanley was hosted at LHIW for close to two months as he underwent 32 sessions of radiotherapy and 6 sessions of chemotherapy. Two years after the treatment, Stanley is back on his feet and though the illness depleted his family`s resources he is grateful for the support offered by LHWI in helping him access treatment and ease the financial burden of cancer treatment.
The shelter features a two bedroomed rented house, a shared living room which also has a bed and a kitchen also with a bed to maximize on the little space. It also has an outdoor area which features a kitchen garden and grounds to host support group meetings for members. It can host 8 patients at any given time for as long as they need to undergo treatment at KNH. A caregiver at the facility ensures that patients are fed, take medication, and attend their clinics.
At the facility, the patients undergo counselling and are equipped with skills such as beading, knitting, soap making, crocheting and mat making. “This keeps their minds engaged and distracts them from the pain,” says Veronicah. The centre also supports patients to pay for their monthly National Health Insurance fund contributions to ease the financial burden of treatment. According to a 2018 Household Survey, 8% of households experienced catastrophic health expenditures, with out-of-pocket payments pushing 1 million Kenyans into poverty annually since less than 20 per cent of Kenyans are enrolled on NHIF.
Growing up in a village in Nyeri county Veronicah ,52 had heard of many cases of women that died of bleeding and was curious to find out what was ailing them. After a 12 year long career in metereology, Veronicah and her husband and a medical doctor and opened a laboratory in Nairobi. It’s from working in the lab that Veronicah learnt about the extent of cervical cancer among women. “Many women confessed that they had not shared with their families about illness and were only taken to hospital after collapsing or when the sickness was advanced,” she says. The women were ashamed of sharing details of the illness and afraid of facing stigma.
Veronicah then begun accompanying the many women she met at the lab , visited them in a cancer ward at KNH and accompanied the to their homes to share with family and friends. She registered the organization after realizing that the numbers were growing, and her personal resources stretched. With time, LHWI widened its scope to focus on other types of cancers, to support patients from low income families in informal settlements and rural areas and create awareness.
In 2012, LHWI begun offering accommodation services after realizing the struggles patients went through while undergoing cancer treatment in Nairobi. “Cancer treatment is harsh to the body. Patients need a comfortable place to sleep and proper nutrition during treatment,” she says.
Veronicah begun by renting a small room in Kibera for sh. 2000 per month to host patients. The location was convenient for patients since it was close to KNH. But due to insecurity and unrest during the 2013 general elections, she rented another a two roomed facility in Kihingo village until May this year, when she found a bigger facility in Mwimuto where she pays rent of sh.10,000 per month.
Mary Wangui, 32 considers LHWI as a playing a critical role in her cancer treatment and survivorship journey. She was diagnosed with nasopharyngeal carcinoma- in 2019 and underwent treatment at KNH in 2020. She was hosted at LHWI as she was almost completing her treatment and equipped with skills in mat making, soap making and knitting. These skills, the single mother of two says have been key in helping her as she recovers. At their home in Gilgil, Nakuru County, Mary busies herself rearing chicken and knitting after receiving a donation of five chicks and a sewing machine from LHWI.
Through the years, the initiative has been run through the support of well-wishers who offer support both in cash and in kind. “We have some corporates, individuals and churches that support us,” says Veronicah a businesswoman and dairy farmer. But she acknowledges that relying on these funds is unsustainable. She hopes that in future the organization can buy land where they can engage in income generating activities such as farming and poultry keeping to sustain the facility. She urges individuals not to shy away from screening of cancer as early detection can save lives. “I also wish that NHIF could pay for screening of cancer since the tests can be too expensive for many people,” she says.
Similarly, while her efforts to accommodate have been helpful, many cancer patients are locked out due to limited capacity. To address the accommodation challenge for cancer patients, Wilson notes that there are ongoing plans to construct a hostel at KNH. The 156-bed capacity hostel estimated to cost sh. 494 million is expected to significantly cut down the transport and accommodation costs for cancer patients and offer a decent shelter.
Looking at the journey of LHWI in retrospect, Veronicah says that she has learnt that family support and having the right mindset are key components in helping cancer patients recover and where the two lack treatment outcomes are poor.