Advancing the Right to Be Forgotten: AICRI Leaders Champion Financial Fairness for Cancer Survivors at Northern Ireland Assembly

Well done to AICRI Co-Lead Professor Mark Lawler and its Director of Development Ciaran Briscoe who were invited on Tuesday, 28th of January, by the Northern Ireland Assembly to speak before their All-Party Group on Cancer. 

The focus of discussion was financial discrimination against cancer survivors and exploring ways in which this financial toxicity can be avoided. Professor Lawler addressed the All Party Group passionately, outlining the significant evidence that cancer survivors post 5 years treatment and without relapse can be considered cured of their cancer. Thus their previous cancer diagnosis should not be taken into account when they are looking for financial products – mortgages, insurance etc. in this situation, The Right to Be Forgotten should prevail, where their previous diagnosis is essentially ignored or “forgotten.    

Professor Lawler highlighted how The Right to be Forgotten had been introduced into nine EU Member States which have adopted legal frameworks to end financial discrimination against cancer survivors, presenting data that were published in a recent paper in Lancet Oncology, the premier cancer journal in the world. Professor Lawler is the lead author of this important publication.

"Pictured at the Northern Ireland Assembly (L-R): All-Party Group on Cancer Chairperson, Mr. Stewart Dickson MLA; Tom Grant, OneLife Insure; Helen Setterfield MBE, Chairperson of OGCancerNI; Professor Mark Lawler, AICRI Co-Lead; and Ciaran Briscoe, AICRI Director of Development and CEO of NECRET—coming together to advocate for the Right to Be Forgotten, ensuring financial fairness for cancer survivors.

Commenting on the event, Professor Mark Lawler, Professor of Digital Health at Queen’s University Belfast and Co-Lead AICRI said “This is not about compassion – this is about evidence and how we act on that evidence. How can the insurance industry insist that a previous diagnosis is relevant – when the overwhelming evidence shows that cancer survivors are cured 5 years post treatment, and sometimes considerably earlier. We are on a mission to stop this financial discrimination against cancer survivors in both Northern Ireland and Ireland.”   

Mr Briscoe highlighted the situation in the Republic of Ireland, citing a number of examples where Irish citizens have benefitted from a Code of Conduct that is in place with the insurance industry in that jurisdiction.   However, the Code of Conduct is not legally binding – introducing the Right to be Forgotten into law is the only way to ensure cancer survivors are protected from financial toxicity. Commenting on the visit to Stormont and the event, Mr Briscoe CEO of the Northeast Cancer Research & Education Trust (NECRET) and AICRI Director of Development said:

“It was critical that we got the Right To Be Forgotten and its implication before politicians and highlighted the suffering and pain that many cancer survivors are experiencing. I’ve neighbours and friends who are affected by it – it’s just not fair and it needs be addressed urgently.”  

The presence of Mark and Ciaran before the All Party Group, together with UK insurance industry representatives and their interest in considering solutions is greatly encouraging.

Based on the positive response from the Members of the Legislative Assembly (MLAs) from across the party spectrum in Northern Ireland, there was a certain sense that this was an important first step in advancing the Right to Be Forgotten initiative in the United Kingdom.  The recently announced Programme of Government in the Republic has seen a welcome commitment over its term to legislate for the Right To Be Forgotten, requiring insurers to disregard a cancer diagnosis where treatment ended more than 7 years prior to application.

Professor Mark Lawler also added “We’ve campaigned for this to happen for the last number of years, especially with stakeholders such as the Irish Cancer Society, so its great to see it in the Draft Programme for Government in Ireland.” But it needs to be for all citizens on this island, not just Ireland. Cancer Knows No Borders – why should we?”