In 28 European countries, cancer is now the leading cause of premature death, having overtaken cardiovascular disease (WHO European health report, 2012), and in 2012 there were 1.75 million cancer-related deaths in Europe (Ferlay et al., 2013). Cancer survival rates across Europe are highly variable with survival rates in Eastern Europe between 10-20% lower than in Western Europe. This is due to inequitable funding for cancer care, lack of national cancer plans, and inadequate access to screening programmes and effective treatments (De Angelis et al., 2014).
Disability and premature death due to cancer cost an estimated €126 billion in Europe in 2009 (Luengo Fernandez et al., 2013) and $895 worldwide in 2008. With cancer incidence expected to rise, this is clearly unsustainable. However, investment in better healthcare services for breast cancer lead to a return on investment of nearly five-fold in the US between 1980 and 2000 (Luce et al., 2006), meaning that the anticipated increased economic burden of cancer can be reversed.
The European Cancer Patient’s Bill of Rights was launched at the European Parliament in Strasbourg, on 4th February 2014 to coincide with World Cancer Day. The Bill is a joint venture between the European Cancer Concord (ECC) – a group of European oncology specialists, patients and patient advocates – and Members of the European Parliament Against Cancer (MAC). The Bill aims to reduce disparities between survival rates and access to healthcare between countries, and to encourage cost-effect cancer care, research and innovation (Lawler et al., 2014). The Bill is a patient-oriented strategy and sets out the 35 rights that every European citizen has if they develop cancer, grouped into three different key principles, or Articles.
Article 1 states that “it is the right of every European citizen to receive the most accurate information and to be proactively involved in his/her care.” Article 1 sets out 11 patient rights, stating that every patient has the right to have accurate information about their disease; relevant research; relevant innovations available locally, nationally or across Europe; and about survivorship and post-treatment support services. Patients should also be included in any decision-making, and should receive a personalised care plan before any treatment takes place, with the right to seek a second opinion.
Article 2 states that “it is the right of every European citizen to optimal and timely access to appropriate specialised care, underpinned by research and innovation.” Article 2 lists 10 patient rights, stating that patients should expect timely access to the best diagnostics and care – including trials and innovative therapies – and psychological support at all stages of their illness. Patients have the right to these services based on need rather than their ability to pay, and children have the right to be treated in a specialised paediatric oncology unit.
Article 3 states that “it is the right of every European citizen to receive care in health systems that ensure improved outcomes, patient rehabilitation, best quality of life and affordable health care.” Article three sets out 14 patient rights. Of note, that patients should have access to healthcare systems that have cancer guidelines in place that are reviewed by experts, and should be audited to ensure that the guidelines are both clinically effective and cost-efficient. Patients should expect their healthcare system to promote high quality research, innovation and participation in trials, and involve patients, care-givers and advocacy organisations in designing care programmes to ensure the best possible patient-experience. Additional support should be given to patients to help them reintegrate into normal life and get back to work following their illness.
At this stage it is unclear how the Bill will be implemented. However, it is a welcome development as it demonstrates the commitment of the European Parliament to providing better treatment for all cancer patients in Europe, in a way that is economically sustainable.
- De Angelis R, Sant M, Coleman MP, Francisci S, Baili P, Pierannunzio D, Trama A, Visser O, Brenner H, Ardanaz E, Bielska-Lasota M, Engholm G, Nennecke A, Siesling S, Berrino F, Capocaccia R, & EUROCARE-5 Working Group (2014). Cancer survival in Europe 1999-2007 by country and age: results of EUROCARE–5-a population-based study. The lancet oncology, 15 (1), 23-34 PMID: 24314615
- Ferlay J, Steliarova-Foucher E, Lortet-Tieulent J, Rosso S, Coebergh JW, Comber H, Forman D, & Bray F (2013). Cancer incidence and mortality patterns in Europe: estimates for 40 countries in 2012. European journal of cancer (Oxford, England : 1990), 49 (6), 1374-403 PMID: 23485231
- Lawler M, Le Chevalier T, Murphy MJ Jr, Banks I, Conte P, De Lorenzo F, Meunier F, Pinedo HM, Selby P, Armand JP, Barbacid M, Barzach M, Bergh J, Bode G, Cameron DA, de Braud F, de Gramont A, Diehl V, Diler S, Erdem S, Fitzpatrick JM, Geissler J, Hollywood D, Højgaard L, Horgan D, Jassem J, Johnson PW, Kapitein P, Kelly J, Kloezen S, La Vecchia C, Löwenberg B, Oliver K, Sullivan R, Tabernero J, Van de Velde CJ, Wilking N, Wilson R, Zielinski C, Zur Hausen H, & Johnston PG (2014). A Catalyst for Change: The European Cancer Patient’s Bill of Rights. The oncologist, 19 (3), 217-24 PMID: 24493667
- Luce BR, Mauskopf J, Sloan FA, Ostermann J, & Paramore LC (2006). The return on investment in health care: from 1980 to 2000. Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research, 9 (3), 146-56 PMID: 16689708
- Luengo-Fernandez R, Leal J, Gray A, & Sullivan R (2013). Economic burden of cancer across the European Union: a population-based cost analysis. The lancet oncology, 14 (12), 1165-74 PMID: 24131614
www.bhdsyndrome.org – the primary online resource for anyone interested in BHD Syndrome.