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Children battling cancer have proved to be particular favourites of the media, providing a personalised lens through which to engage the public with accounts of the leaps and limits in cancer research and treatment, and triggering strong emotional responses in commentators and politicians as people imagine the distress of the afflicted family, and rush to try to help. The potential heartbreak of losing a child despite the seeming cornucopia of biomedical options to fight disease is heightened when a promising treatment option is ruled, in this case literally, out of court. Public outcry begins when the state attempts to forbid a family from seeking hope outside of the NHS’s resources. The need to protect the interests of the child is counter-weighed by the right of the family to follow their hope.
In the United States of America, the media carried human interest stories about families touched by childhood cancer from the 1930s, where parents resisting treatment for tumours in their children were routinely chased by the courts to force them to permit surgery and radiotherapy, which by today’s standards look barbaric. Newspapers covered debates between legal and medical experts, preachers and members of the public, over whether or not parents had the right to prevent their children being given treatments that would do lasting damage to their developing bodies with no guarantee of lives saved.
In Britain, however, the plight of families facing the challenge of childhood cancer was not mentioned in the news until the 1960s. This was more than just British reticence to discuss private matters in public; the outlook for children with leukaemia or solid tumours was very poor until the 1980s, and it is clear that the major medical charities and the government’s own Medical Research Council established something of a gentleman’s agreement with leading editors in the British press. They hoped to avoid coverage of individual cases of sick children for whom the nation could do very little, in order to prevent a flood of letters and telephone calls to Members of Parliament and members of the Civil Service, pleading for access to better answers and treatment options.
Raising hope, raising money
The promotional and fund-raising efforts of new cancer research charities such as the Leukaemia Research Fund, founded in 1960, was central to the rising interest in childhood cancer: children’s cancers attracted more public donations than work on cancer affecting adults, and stories about research that might deliver better outcomes for families generally proved more effective than accounts of existing treatment. The Leukaemia Research Foundation carefully built upon American fund-raising techniques used to raise money for research into both polio and childhood cancer, where individual child sufferers were presented as the beneficiaries of donated funds. Photographs of children that the public could help to save worked better than tables of survival statistics at motivating volunteers to solicit and collect donations. Every press story featuring a sick child, however, did indeed create hundreds of appeals for more information and better treatments, exactly as had been feared.
Ever since children with cancer have been making the news, the plight of sufferers who are prevented from accessing potentially life-saving or life-changing treatments has attracted extensive media coverage and public interest. The founding principles of the National Health Service seem to promise access to the best available health care for all, so when a family, such as that of four-year-old Edward Burke in 1963, were prevented from accessing a possible leukaemia treatment available only in Corsica, there were rallies in his home town of Blackpool and in Ajaccio, Corsica. Supporters demanded that he be allowed access to the treatment despite the concerns of both the British and the French governments regarding its efficacy. Hundreds of members of the public wrote to the Ministry of Health and their own MPs, and even the Queen, appealing for intervention in one family’s situation, to give the boy’s parents permission to try a treatment that appeared to be their last hope.
Edward Burke’s parents insisted on telling their side of the story, explaining why they wanted to travel with the seriously ill child to another country to try out an alternative method of ridding the body of cancer cells. Their story was mediated by news editors, who chose which aspects and quotes should be presented to the public (although their full correspondence with government departments has been preserved in the National Archives). The American families fighting legal battles in the 1930s to force them to consent to treatment for their children were similarly subject to editorial control, unable to directly share their reasoning and fears with the public at large.
Today’s families have greater opportunity to put their case across more fully, using social media, blogs, and videos to try to influence public opinion. The technologies for sharing the story are new but the call for support is the same: give us access to hope.
Emm Barnes Johnstone is a Teaching and Research Fellow in the History Department at Royal Holloway, University of London; her book The Changing Faces of Childhood Cancer: Clinical and Cultural Visions since 1940 (co-written with Joanna Baines) will be out in January 2015.
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