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From her office at the Korle Bu Teaching Hospital in Accra, Lorna Renner took a call this month from the parents of a child she had diagnosed with untreatable cancer. They had returned to a clinic nearer home for the last few weeks of her life.
“I could hear the child crying in pain on the phone on the ward because they had not got any painkillers there,” she said on the phone from Ghana. “I had given them some morphine at discharge, but the other hospital had run out of supplies.”
Given the limited number of hospital beds, there is a push for children with cancer to return either to local clinics or to their families. But a shortage of drugs and expertise could mean they face a double tragedy: not only do they have no chance of a cure but they will also die in pain.
Poor access to palliative care is not unique to Ghana or indeed the developing world. Across the globe, the medical establishment remains nervous about the prescription of powerful drugs to alleviate pain. But Dr Renner’s patients are disadvantaged by the disease, their young age and their location.
World Child Cancer (WCC), the UK-based charity chosen by the Financial Times for the 2013 Seasonal Appeal, works with children with cancer in the developing world, where survival rates are much lower than in the west. As part of its work, the WCC tries to help children get the drugs they need and with this aim in mind has worked to encourage training, access and improved education. In Ghana, Dr Renner and her team – which have run training programmes on drugs for medical staff – are at the forefront of their efforts.
Painkillers are normally available in the centres in which they work but many patients ultimately suffer because they do not have access to strong enough drugs, said Tim Eden, medical patron at World Child Cancer. “The biggest hurdle is getting the availability of palliative care drugs. Mostly children do get the drugs to provide relief in the big teaching hospitals but not outside,” he said.
The contrast between developing countries and the West is stark. Less than half of paediatric oncology units in low and medium income countries provide palliative care, according to a survey in 58 countries at the start of the decade. Potent opiates and other pain relief medicines are frequently unavailable.
Another survey estimated that more than 98 per cent of opiates for all diseases were consumed in industrialised countries despite the disproportionate burden of disease in poorer nations. Yet such disparities have little to do with the price of the treatments, which are typically available at low cost from generic manufacturers.
“Morphine has been around for over 200 years. It is cheap, effective and easy to administer. But doctors worry about prescribing it,” said Julia Torode, deputy chief executive of the Union for International Cancer Control.
Policy makers have however focused on controlling the abuse of opiates as illegal narcotics rather than supporting their legitimate value in pain relief, Ms Torode said. As a result, governments tightly control their manufacture and distribution, sharply restricting supplies and making pharmacies, nurses and doctors cautious.
“It tends to be the more complex formulations that are abused but it is extrapolated to all opioids. The message should be that simple generics do a really good job and don’t suffer the potential for abuse,” she said.
Poorly trained doctors may be anxious about prescribing drugs for children, Joan Marston, executive director of the International Children’s Palliative Care Network, based in South Africa. “Doctors are afraid of giving opiates to children. They don’t have the knowledge, worry about giving smaller doses, are afraid they will kill the child or don’t have experience of assessing pain in children.”
In many low-income countries, priority is given to adult pain relief, an ICPCN study found, with a lack of funding for drugs for children. Health workers in any case are reluctant to prescribe or administer the drugs.
“There is even a myth that babies don’t feel pain in the same way as adults,” she says. “That’s nonsense. They experience pain at the same level as we would, even if they cannot always express it in the same way.”
There are however signs of progress. Palliative care is once again on the agenda at the International Narcotics Commission in Vienna in the wake of a UN initiative on non-communicable disease.
In September, African health ministers agreed to support funding, access and training for palliative care. Local initiatives to tackle the problem have sprung up. Hospice Africa Uganda trains nurses to distribute powdered morphine given dissolved in water to patients in their homes.
On the ground, the improved education of health workers remains pivotal, Dr Renner said. The charity plans to create four satellite centres around the country to provide regular support on palliative care.
“Doctors still hold back,” she says. “Some younger ones are afraid or worried about side effects. In hospitals, there is a lack of awareness.”