Young cancer patients play on Family Day at KNH.
NAIROBI, KENYA – Joyce Nyambura lost her 3-year-old son, Gideon Mugo, to testicular cancer last year. Because she couldn’t afford his hospital bill, she says she never saw him during his last moments alive, nor was allowed to take his body home to bury him.
“I went to the hospital almost every day to plead with them to release my son’s body,” she says. “Two months later, a social worker directed me to a notice board where there was a list of people that had already been buried. My son’s name was in the list. They had buried him in a mass grave. I cried all the way home.”
In Kenya, rituals of mourning and death have significant social value. When someone dies, the period of mourning culminates when the body is brought home and buried among relatives. But Nyambura says that Kenyatta National Hospital, KNH, refused to release Mugo’s body because she could not pay his medical bill of 600,000 shillings, or almost $7,400 USD. Nyambura earns a low wage as a maid, and as an orphan and single mother, she had no one to help her.
“I was devastated because I knew Mugo died in solitude, while he would have wanted to spend his last days with his family,” she says.
The hospital’s administration declined to comment on the issue.
“I don’t want to discuss the past,” says Simon Ithai, KNH’s chief public relations officer.
Nyambura says the eight months since her son died have been the hardest of her life.
“I wish someone could tell me where they buried him,” she says. “Maybe visiting his grave would make me feel better.”
Mugo was one of more than 200 children with cancer throughout the various wards at KNH, according to Jane Ochieng, head of Ward 1E, the children’s cancer ward, where Mugo lived for a year. Most of the children here will die, she says.
Pediatric cancer is on the rise in Kenya, although inadequate statistics make it difficult to assess and address the scope of the problem. With only one cancer treatment center in all of Kenya, a lack of early diagnoses, equipment, drugs and affordable treatment drags down survival rates compared with better-equipped countries. As Kenyans wait for Parliament to pass the Cancer Control Bill, parents of young patients band together for emotional and financial support as they strive to attain insurance for all children with cancer.
Last week, Kenyans observed World Cancer Day with the theme, “Cancer can be treated,” thanks to Kenya Cancer Association, KENCASA, a nonprofit organization that aims to raise awareness and lobby for government support. KENCASA recently asked the government here to declare cancer a national disaster, according to Kenya Broadcasting Corporation, KBC. Almost a third of cancer incidences are preventable, while another third of local cases could be treatable if early diagnosis and sufficient resources were available.
In Kenya, cancer kills more people than HIV and malaria combined, according to David Makumi, KENCASA vice chairman. The World Health Organization, WHO, projects cancer deaths to rise to more than 11 million worldwide in 2030, noting that more than 70 percent of these deaths occur in low- and middle-income countries. Data on cancer in Kenya is limited compared with research on other health issues, such as HIV/AIDS, but KBC estimates that cancer kills 18,000 Kenyans per year as the country’s No. 3 cause of death.
The colorfully painted walls of Ward 1E in KNH offer a sense of hope. More than 20 children play in Ward 1E. They jostle to have their photos taken and play games, despite the bandages covering various parts of their bodies. In the next room, two terminally ill children fight for their lives in little beds.
But despite their energy, these children rarely leave the hospital alive, Ochieng says.
“This is because most cases are diagnosed late,” Ochieng says. “We rarely get cases that are in stage one. Most cases are referred here from district hospitals when it is too late. The hospitals do not have equipment to diagnose cancer and treat patients for different ailments for more than six months before they refer them here.”
KNH, the only public hospital that treats cancer in Kenya, receives 4,000 patients each year and 40 new patients are added to the waiting list every week. The hospital is unable to keep up with demand, Dr. Onyango Opiyo, head of its cancer treatment center, said in a Capital News report.
But until recently, the hospital had only two radiotherapy machines, both more than 20 years old. Only one is operational and it, too, breaks down repeatedly, delaying treatment for most patients.
“The hospital cannot attend to all patients with these two machines,” says Dr. Jotham Micheni, the hospital’s former director. “Some patients die while waiting in the queue.”
KNH recently purchased a new machine that will be ready to treat patients in March, Ithai says. But the hospital still needs two more machines to meet demand, according to KBC.
A lack of chemotherapy drugs complicates the lack of equipment. Micheni says the hospital can't afford to buy chemotherapy drugs for patients because it does not get funds from the government for recurrent expenditure. The government allocates only 70 million shillings, or a little more than $860,000 USD, a year to cover cancer treatment for the whole country, Makumi says.
“This is not enough to treat even one patient,” he says.
Medical Services Minister Peter Anyang’ Nyong’o, who has prostate cancer, says he is currently in the United States receiving treatment because Kenya lacks the equipment and specialists, according to the Daily Nation newspaper.
The high cost of treatment creates another challenge. One dose of chemotherapy costs 150,000 shillings, $1,850 USD, says Mary Onyango, breast cancer survivor and executive director of Kenya Breast Health Program, a breast cancer advocacy and support organization. Some parents, like Nyambura, must abandon their children at the hospital because they can’t afford the astronomical bills.
The Cancer Control Bill, which is likely to be tabled by Parliament this year, proposes the creation of an independent body to control rising incidences of cancer and fund its treatment. Nyong’o says the bill is ready and he hopes the House committee on health will press for its immediate passing.
Danson Mungatana, a member of Parliament, MP, and retired medical services assistant minister, says the government doesn’t consider cancer and other noncommunicable diseases, ones that can’t be transmitted by direct contact, a priority.
“These diseases are still considered a preserve for countries in the West as the government focuses on malaria, AIDS and such,” he says.
Makumi says he hopes MPs will support the bill to begin to contain the disease.
In the meantime, parents of children with cancer at KNH have formed a group called Hope for Cancer Kids to support one another and raise money for treatment.
“We decided to create a forum where parents can share their frustrations and comfort each other,” says James Nyaga, a founder, member and now a director of the group.
Like Nyambura, Nyaga also lost his son to cancer in 2009. His son, Lee Kathiga, was diagnosed with cancer in 2007, when he was 3.
“I was given the options of leaving him in [the] hospital or taking him home,” Nyaga says. “I decided to take him home because I wanted him to [live] his remaining days to the full[est].”
Unlike Nyambura, his son’s treatment was covered under the National Hospital Insurance Fund, NHIF. But most patients aren’t covered by the fund, which requires Kenyans to pay 160 shillings, less than $2 USD, a month, an amount many say they can’t afford.
“If all children suffering from cancer are covered, we would not have cases where parents abandon their children in [the] hospital,” Nyaga says. “Others never bring back their children for treatment even after relapse, as they fear accumulating hospital bills.”
The support group has been raising funds to cover every child diagnosed with cancer under the NHIF to ensure they receive treatment.
