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Monday, September 26, 2016
- Her husband works as a nurse in one of Pakistan’s most prestigious private hospitals, but when their two-year-old daughter Mary was diagnosed with leukaemia, Sadaf John could only be thankful that the Children’s Cancer Hospital (CCH) existed in this country.
“If it hadn’t been for this (hospital),” said the 32-year-old mother of three, “we would not have been able to afford such expensive treatment.”
According to CCH chief Muhammad Shamvil Ashraf, the average cost of a complete treatment for leukaemia at the hospital could run up to 800,000 Pakistani rupees (more than 9,000 U.S. dollars).
Fortunately for the Johns and other families with members seeking treatment at CCH here in Karachi, the hospital is a charity facility that does not expect payment from patients, although it welcomes such. And whenever a patient pays – whether partial or in full – the hospital, run by the Children Cancer Foundation, considers it as a “donation”.
At least 70 percent of CCH patients, in fact, cannot pay at all. Each year, Karachi’s philanthropists – mostly industrialists, as well as overseas Pakistanis – pump as much as 200 million rupees (2.3 million dollars) into CCH, enough to cover treatment of hundreds of children and teenagers with cancer.
The leading causes of death in Pakistan, like other developing countries, continue to be diarrhoea, pneumonia, and complications related to birth. Ashraf, however, says that paediatric cancer “remains a hidden crisis because of high mortality due to communicable disease”.
“There is a slight annual rise,” says the doctor, “but in developing countries it is now being diagnosed, so it seems it is on the increase rapidly. But that is not entirely true.”
Still, the numbers — and the issue of access to treatment — are cause for worry.
CCH alone has 300 new patients seeking treatment every year. Last year, its three outpatient sections received as much as 11,223 visitors. Says Ashraf: “The number keeps increasing every year.”
Indeed, while Pakistan has no centralised data collection for childhood cancer cases, data gathered from the Karachi Cancer Registry indicate that there could be as much as 6,000 children who end up with cancer every year in Pakistan.
Almost 50 percent of these kids are not properly diagnosed or treated. Of those who do reach a facility, 40 percent cannot get treatment because they lack funds. More often than not, too, the disease has already reached an advanced stage when it is diagnosed, says Ashraf.
According to the registry, leukaemia, or blood cancer, is the most common childhood cancer (26 percent) in Pakistan, followed by lymphoma (22 percent).
Hospital-based combined data of CCH and the National Institute of Child Health also show leukaemia (31 percent), lymphoma (20 percent), bone tumour (eight percent), sarcoma (eight percent) brain tumours (seven percent), and retinoblastoma (six percent) as most common malignancies seen in children.
The database of the 22-bed CCH reveals the median age of its patients as eight years, with 28 percent of the children below five years of age.
For sure, in a country where children die from disease like diarrhea and malaria, asking a cash-strapped government to set up exclusive centres for cancer may seem difficult, or somewhat inappropriate. As it is, the government is able to spend only 0.7 percent of the Gross National Product on health.
Yet as Ashraf points out, for parents, getting their children treated is paramount. “To them it does not matter how uncommon the disease is!”
He also says that it is not only poor families who are overwhelmed and ultimately defeated by the high cost of cancer treatment; even middle-class families find themselves unable to cope with the expenses, especially when the treatment stretches for months on end.
While the cost and duration of cancer treatment varies depending on the type of cancer and the age of the patient, says Ashraf, expenses generally range from 200,000 rupees (2,380 dollars) to one million rupees (about 119,000 dollars), with the treatment lasting from four months to five years.
Little Mary John, for instance, has been receiving chemotherapy at CCH since March. Save for five days last month, when she had to check out temporarily while her mother delivered another daughter, at another facility, she has yet to leave the hospital.
Several hospitals across the country have paediatric oncology units. But CCH is the only hospital in Pakistan that caters exclusively to paediatric oncology.
Strangely, the hospital does not leave one with the feeling of disquiet.
“It’s not visually traumatising,” agrees head nurse Rehana Panjwani. But she says that more than the young kids, it’s the adolescent patients who are more difficult to handle. “They understand the disease and know the concept of death,” she explains. “They are also very conscious of their looks.”
Panjwani herself confesses that she has yet to get used to seeing life end too early for far too many. And yet, she says, observing children being given another lease on life is a humbling experience. “You gain strength from these sick children,” she says. “It is their resilience and the ability to fight back that gives me so much energy.”
Adds Panjwani: “There is so much to celebrate here.”