KARACHI: The absence of a hostel facility in the city to provide temporary residence to poor patients’ attendants is a major reason that forces a large number of families not to avail free life-saving treatment for their children suffering from cancer, it emerged on Sunday.

Health experts working at health units offering free cancer treatment told Dawn that the rate of treatment abandonment in cancer patients was very high and it was estimated that about 30 per cent to 40pc children reporting with cancer at hospitals failed to receive treatment.

The situation, they said, not only endangers a life but had serious financial implications, especially on a health facility being run on donations.

“Treatment abandonment is defined as the failure either to start or complete medically indicated curative therapy. About 20 to 25pc families reporting at hospitals don’t initiate cancer treatment for their children that could be cured in most cases while another 10 to 15pc leave in the middle of the treatment,” said Dr Shamvil Ashraf, the medical director (paediatrics) at the Indus Hospital.

Around 500 new cases of cancer are reported at the unit.

About half of the families that come to the health facility, he said, were from outside Karachi that included parts of interior of Sindh and Balochistan.

“Giving their serious financial constraints and a long sustained treatment required for intensive cancer therapy, they have a genuine concern over the lack of a residence. Efforts are being made on our part to develop a hostel facility for such families,” Dr Ashraf said.

Pointing out other reasons for patients leaving against medical advice, he said that there were some families that would not believe that cancer could be cured while others opted for alternative therapies and turned to homeopaths, hakeem and even spiritual healers.

“It’s surprising as well as shocking when educated people choose to go for an exclusive spiritual healing. They are not convinced by our logic that they can opt for spiritual healing along with medical treatment,” he elaborated further.

According to Dr Ashraf, there is also a large group of families who are afraid of surgery, chemotherapy and amputation, which is required in some cases and is life-saving to contain the spread of the disease.

“For instance, if retinoblastoma [a rare rapidly developing cancer that develops from the immature cells of a retina] is at an advanced stage, it requires removal of the eyeball. However, acceptance of amputation is rare. Some families take their child away as soon as he or she gets a little better. They say that they don’t want to see their child suffer more [due to the side effects of medicines]. There is no difference between Karachi and non-Karachi when it comes to myths and misconceptions about cancer,” he said.

Childhood cancer was curable in majority of the patients provided that the patient was early diagnosed and properly treated. There was a dire need for changing people’s mindset and create awareness on cancer, he added.

Dr Ashraf, earlier the head of the Cancer Children Hospital now made a unit of the Indus Hospital, has been able to reduce treatment abandonment from 40pc to 22pc in recent years at the health facility. That happened after the hospital intensive patient counselling, inducted social workers and a psycho-oncologist.

Part of the health facility’s responsibility is now to arrange meetings of recovered patients and their families with parents whose children have recently been diagnosed with cancer.

Repeated infections can take child’s life

Sharing similar concerns on treatment default, Dr Uzma Imam, senior expert working at the Paediatric Centre of Child Aid Association at the National Institute of Child Health (NICH), said that at least 15pc patient families leave before treatment and 15 to 20pc after diagnosis (the cancer lab investigation cost ranges between Rs100,000 and Rs200,000).

Over 400 new patients were registered at the NICH in 2013. Of them, 234 went on treatment, 57 left before during investigation and treatment, 73 were non-cancer cases while 26 died. Around 581 (old and new cases) were admitted during the same year.

“There is a huge burden of cancer patients as families report from Sindh, southern Punjab and Khyber Pakhtunkhwa as well as Afghanistan. We should have satellite clinics to cater to patients living in remote areas,” she observed.

Treatment default, according to Dr Imam, is not just a huge waste of time but has serious financial affects as cancer diagnosis and treatment is costly.

“Having said that, it’s the child who suffers the most. At times, parents return, but by that time the mortality and morbidity risk has increased multiple times. Drug resistance is another source of concern for patients that leave treatment in the middle,” she said.

To a question about the overall data of cancer patients at the NICH, she said that about 21pc patients presented with disease at advanced stage whereas 80pc reported with non-advanced stage. The most common cancer in children is leukaemia (45pc) followed by lymphoma (14pc), retinoblastoma (7pc), neuroblastoma (7pc), germ cell tumour (6pc) and others (21pc).

Highlighting some other important issues, Prof Dr Nizamul Hassan, the first director of the NICH and president of the Child Aid Association (CAA), said that little awareness existed that repeated infections could take a child’s life.

“Often children who lose the battle against cancer die of repeated infections rather than the disease itself. On the other side, we have poor patient families that have no education and live in slums, some of whom have to buy water for daily use. That makes convincing families to practice basic principles of hygiene quite difficult,” he said.

The CAA that opened its cancer unit in 1999 has so far treated 55,000 patients.

Published in Dawn, April 13th, 2015

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