We risk a medical timebomb if we don’t standardise EU’s cancer care
IS IT acceptable that Ann from Sligo cannot currently get her son Frank vaccinated against the human papilloma virus (HPV) whereas Anna from Schaan (in Liechtenstein) can so her son Franz can avoid the future devastating effects of oropharangeal cancer? Or that Jimmy in Belfast cannot get access to life saving treatment for his lung cancer, whereas James from Birmingham receives the latest innovative cancer drug for his tumour? Or that for every Elsa in Sweden with an 86pc chance of survival following treatment for breast cancer, there exists just across the Baltic Sea, in Lithuania, an Elze whose chance of survival plummets to 67pc?
It was these appalling disparities that cancer patients experience every single day of their lives that brought together an equal partnership of patients and health care professionals to address cancer inequalities across Europe.
And this initiative had a distinctly all-Ireland flavour, with initial leadership from Queen’s University Belfast and significant involvement from cancer specialists in the Republic of Ireland and patient focused organisations including Cancer Focus Northern Ireland and the Irish Cancer Society. Leadership from Queen’s University and the University of Leeds through a pan-European partnership emphasises the importance of the UK as a European cancer leader, something that will be severely challenged post-Brexit.
But lest we think that everything on this island is OK, the latest OECD report ‘Health at a Glance: Europe 2018’, highlighted in this newspaper (Irish Independent, November 23), indicates the Republic of Ireland has the second highest incidence rate for cancer in the EU, second only to Hungary and 10pc higher than the EU average. So much needs to be done
On World Cancer Day 2014, we launched the European Cancer Patient’s Bill of Rights in the European Parliament in Strasbourg, with significant support from MEPs from the island of Ireland. It has been translated into 17 languages and now involves more than 60 organisations from 25 European countries.
The disparities European cancer patients face are significant. Accurate up-to-date information empowers patients to be active participants rather than passive recipients in their care. But much of the information is confusing. Patients must be involved from the very start so information is understandable to the average citizen. Similarly, patients must be involved in designing cancer research protocols.
The variation in screening across Europe is a big worry – fragmented services and the negative influence of austerity have compromised our ability to prevent cancer, as evidenced by higher mortality rates for cervical cancer in Romania and Greece. The situation with bowel cancer screening is disappointing; despite assurances from European ministers more than 20 years ago, many countries still have ineffective programmes.
Ireland and the UK are amongst only five countries in Europe that restrict access to CRC screening to those aged 60 years and older. Fortunately, the UK recently announced plans to expand it to 50 year olds, while the new Irish National Cancer Strategy reiterated the intention to expand access to 55 year olds by 2021.
Participation rates, however, vary greatly – in Ireland only 40.2pc take up their screen invites, whereas there is a 60pc uptake in England/Northern Ireland.
Unequal access to curative treatments is also evident across Europe, and not just in Eastern Europe – in Northern Ireland access to cancer medicines has been a post code lottery – leading to the farcical situation that where you live can determine the quality of cancer care. And this despite Northern Ireland leading a number of the clinical trials which provided the evidence base for the effectiveness of some of these innovative medicines.
Thankfully, through evoking the Bill of Rights by Cancer Focus Northern Ireland and their leadership in a sustained public campaign, the Department of Health recently announced an initiative to deliver improved access to innovative cancer drugs for its patients. A great victory for advocacy, demonstrating what patients and healthcare professionals can achieve when they work together.
The situation for access to innovative medicines in the Republic of Ireland is somewhat better, thanks in part to Cancer Trials Ireland, a clinical collaborative which brings together all eight cancer centres and has been highly effective in ensuring Irish patients participate in investigator-led clinical trials. However, there are still a significant number of innovative medicines not available which patients across the Irish Sea can access.
The other issue is cost. Pricing of innovative drugs is an issue, particularly for the latest breakthrough approaches in targeted therapy and immunotherapy. Balancing efficacy and price to ensure patients get access to the latest advances, but in a way that costs are controlled, will present a challenging dilemma for health services in both jurisdictions.
The end of cancer treatment does not signal the end of cancer care. There are more than 14 million survivors in Europe; are we doing enough for citizens who have lived beyond cancer? All aspects of individual wellbeing must be considered.
To finish, imagine that you are reading this article in 2050 and despite all the warnings, we have let the current Europe of Disparities persist. This criminal lack of action, coupled with an ageing population and an obesity epidemic, will mean a cancer patient on the island of Ireland will die every seven seconds.
The Republic has the second highest incidence rate for cancer in the EU, second only to Hungary
Prof Mark Lawler is chair in Translational Cancer Genomics at Queen’s University Belfast. The Cancer Inequalities Project highlighted in this article won the prestigious 2018 European Health Award