Cancer survivors and the right to be forgotten

Past-President of the European Cancer Organisation Prof Niall O’Higginshighlights the important topic of cancer survivors, which he argues deserves the full attention of Irish legislators and should be supported by the medical profession

The EU Beating Cancer Plan, setting out the European Union’s strategy for cancer care, will be launched this month. It will be given priority by President Ursula von der Leyen and the whole European Commission and will include a section on cancer survivorship.

At the European Cancer Organisation (ECCO) Summit meeting last month attention was drawn to the relatively neglected subject of the needs of the steadily increasing number of people who are survivors of cancer in the time following the completion of treatment.

Until recently, there has been an alarming lack of information and little research about the needs of survivors. These needs are serious and prolonged, often lasting several years. Accumulating evidence indicates that much of this unrecognised burden can be addressed and assuaged by supportive policies, social interventions, and, above all, by legislation.

Mental disorders
Among cancer survivors the prevalence of mental disorders is more than 40 per cent and some 50 per cent suffer from psychosocial and non-medical problems. Anxiety, nervousness, sleep disorder, fatigue, depression, demoralisation, impaired body image, sexual difficulty and poor concentration are just some of these.

Financial toxicity
Since about 40 per cent of new cancers are detected among people of working-age financial costs and worry about loss of productivity, job loss, access to the workforce and cost of supportive care are added concerns.

Financial toxicity concerning health and other insurance, access to mortgages, bank loans and other financial services have led to undeniable discrimination against cancer survivors who may face exclusion, refusal or an extra premium.

Long-term survival
These problems are growing. Cancer screening programmes, early detection and more effective treatments have resulted in substantial increases in survival and approximately 50 per cent of individuals treated for cancer survive 10 years or more. There are now many millions of cancer survivors in Europe and this number is increasing by 3 per cent per annum.

The enormous improvement in long-term survival of children and young people with cancer brings with it a variety of difficult challenges that require the particular attention of researchers and health planners. These include concerns about educational and employment opportunities, feelings of social rejection and isolation and anxiety about fertility in addition to issues related to the long-term noxious effects of anti-cancer therapies.

Need for legislation
Approximately 50,000 to 70,000 new cancers in Europe and about one million worldwide occur annually in the 15 to 39-year age group. Some 20 per cent of five-year survivors younger than 50 years are unable to obtain life insurance and property ownership is difficult or impossible in some countries.

The ECCO has recommended that “in respect to accessing financial services, the right of cancer survivors not to declare their cancer 10 years after the end of active treatment and five years if they had cancer under 18, should be codified across European countries.” This Right to be Forgotten legislation was passed into law in France in 2016, in Belgium in 2018 and in Luxembourg last year. It is expected that The Netherlands will follow this year. The time has come to add Ireland to this list.

Ongoing needs
Reforming healthcare in Ireland should include the ongoing needs of people who are long-term survivors of cancer, with emphasis on psychosocial care, quality of life, return to work and independent living. Advocacy organisations can amplify the call to move this agenda forward.

Information on survivorship should be a component of all cancer strategies so that a pan-European policy can be put in place for survivors.

A relevant legal framework, informed by collaborative EU research and experience, and assisted by the legislative processes adopted in France, Belgium and Luxembourg, should now be developed in Ireland.

The medical profession can provide leadership in promoting this initiative. 

Author
Prof Niall O’Higgins, Professor Emeritus of Surgery, University College Dublin, Past-President, ECCO.

Source: Irish Medical Times.

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