Jocalyn Clark: Where cancer is a neglected disease

Jocalyn_Clark1A great deal of attention is being paid to non-communicable diseases (NCDs) as an emerging source of illness, death, and healthcare costs—recognising that low and middle income countries (LMICs) in particular are faced with a growing threat.

The NCDs movement tends to coalesce around four priority conditions—heart disease, diabetes, lung disease, and common cancers—and has been effective at pressing for the inclusion and priority of these diseases in the “post 2015” international development agenda.

The case for cancer as a priority has strong features—cancer remains a leading cause of morbidity and mortality around the world, with an estimated 14.1 million new cases and 8.2 million deaths annually. In richer countries, cancer prevention and treatment have long had considerable public support and attention. Just think about the pink ribbon and LiveStrong campaigns, which have widened cancer awareness, research, and care. Cancer in childhood evokes particularly strong feelings of compassion and support.

At the level of global agenda setting, the disproportionate burden of cancer in LMICs helps make the case for more attention and investment. Of the 200 000 new childhood cancer cases each year, 80% are said to be in LMICs, where access to effective treatments is limited and survival rates may be as low as 5%. In a harrowing inequity, these high burden countries have had less than 5% of cancer resources.

Post 2015 advocacy emphasises the need to improve cancer prevention, treatment and care across the world, including calls for a global cancer fund like The Global Fund or GAVI. Paediatric oncology has been highlighted as a particular priority for the fund. The World Health Organization’s global action plan on NCDs calls for better treatment strategies to prevent premature cancer mortality. Others have urged attention to palliative care and pain relief, including for children.

But on the ground in the developing world, at least in Bangladesh, cancer feels like a neglected disease.

Despite cancer being a leading cause of death in Bangladesh (the US Centers for Disease Control report it is number one, the government of Bangladesh says it’s number six), it gets little attention here; child cancer virtually none. The government’s national cancer control strategy through 2015 highlights the economic impact of cancer because of the disability and death it inflicts among working age individuals—on this point in particular a recent editorial in a Dhaka daily calls for action to prevent premature mortality. The strategy, which expires this year, does not appear to have a succession plan and does not include actions or a particular focus around child cancer.

There’s no national registry in Bangladesh, but estimates suggest there’s up to 9000 new cases of child cancer a year. Less than a quarter are diagnosed (and perhaps much fewer), and when they are it tends to be late and thus unamenable to cure. At the country’s largest specialist paediatric oncology centre in Dhaka, the government run Bangabandhu Sheikh Mujib Medical University (BSMMU), about 470 new cases are currently seen each year (four other smaller hospitals in the country see about the same number annually). The majority of cases at BSMMU, where there are 31 inpatient beds, are acute lymphoblastic leukaemia and most are curable with simple standard therapies. Over 40% of families last year refused or abandoned treatment, challenging even this leading specialist centre to deliver services.

One reason to worry that these numbers will worsen is that infectious diseases and malnutrition have substantially reduced in Bangladesh. However, these declines lead to increases in non-communicable causes of illness and death. The number of children with cancer worldwide is estimated to increase by 30% by 2020, and there’s no reason to believe that this projection won’t be true in this country as well.

On the face of it, costs should not be a barrier to treatment. Most cancer treatments for children are relatively inexpensive and involve generic medicines. Therapies in Bangladesh are essentially the same treatment protocols as in the UK. The charity World Child Cancer estimates a full course of leukaemia treatment at BSMMU to be just £2500 (€3440; $3832). Still, even in a government run facility the costs fall to the families and the 2000 taka (£17) per week of chemotherapy can be prohibitive. Families are also required to purchase and procure their own equipment (IV lines, sterile pads) and pay for any blood tests or radiology.

There’s also a real lack of general awareness about cancer. Healthcare workers themselves are unaware that effective treatments are available, says Megan Doherty, a Canadian paediatrician and palliative care consultant who is working with BSMMU. We need “to get the message out that child cancer is treatable,” she says. “Not only to the public but to healthcare workers who otherwise simply say to parents ‘take your child home to die.’”

Of course, raising awareness will create demand. And demand will challenge capacity.

Several new initiatives are operating to help build capacity. One large project by World Child Cancer has provided funds and developed a “twinning” scheme with University College London and the British Columbia Children’s Hospital for five years of training of BSMMU medical and nursing staff. The project also aims to improve data collection and monitoring of cases and outcomes—as well as developing a satellite network to reach and treat kids outside of Dhaka.

In a setting of such financial scarcity, the provided medication subsidies are key—Dr Doherty says that they have begun to see improvements in treatment refusal. Still, less than 40% of children with leukaemia currently survive, in contrast to the 90% plus survival rates in rich countries. Infection risk, bleeding, and lack of intensive care capacity work against children’s chance of survival in Bangladesh, she says.

National priorities are influenced by the global health agenda, so efforts to push child cancer internationally are helpful here. But more work is needed to create the awareness and momentum among Bangladesh citizens and policymakers, so that child health priorities—which still tend to favour malnutrition and infectious diseases, such as pneumonia and cholera—encompass non-communicable causes. And, likewise, that cancer control strategies include children.

Jocalyn Clark (@jocalynclark) is executive editor of the Journal of Health, Population and Nutrition, and other external publications at icddr,b (a global health research organisation in Dhaka, Bangladesh). She was a senior editor at PLOS Medicine and assistant editor at The BMJ.

Competing interests: The author has volunteered at the playroom at BSMMU’s child cancer ward.