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The $4 billion program will embrace the disease's entire pathway, from prevention to quality of life of patients and survivors.
One of the elements in the European Union's new plan for tackling cancer, launched at the start of February, takes the idea of patient care a step beyond treatment and into the issues that confront those who have survived cancer. Geared to take advantage of new technologies, research and innovation "as the starting point," this $4bn program will also embrace the entire disease pathway, from prevention to quality of life of cancer patients and survivors. So, in addition to promoting early detection through wider access to quality screening and launching a 'treatment for all' initiative for improved diagnosis and treatment, it will also devote attention—and funds—to rehabilitation, potential tumor recurrence, metastatic disease, and measures to support social integration and re-integration in the workplace. This extends beyond the natural domain of clinical trials professionals—but is part of a continuum that brings some additional light into those corners of patients' lives that can often remain somber even after the work of the clinical trials community has worked its own magic.
This novel attempt to bring some system into the post-treatment phase of cancer patients' lives is the result of a movement that has been gathering force in Europe over the last five years or so. It is a thoughtful response to the improved survival rates that advances in oncology have permitted—with an estimated 12 million survivors now in Europe. It is a conscious decision to shift the focus from ‘how long’ people live after diagnosis to ‘how well and how long’ they live.
Concrete plans include a ‘Cancer Survivor Smart-Card’ that will, from 2022, summarize clinical history and help in monitoring follow-up care, connecting the patient with health professionals to improve communication and coordination. A virtual ‘European Cancer Patient Digital Centre’ will help standardize the voluntary exchange of patients’ data and monitoring of survivors’ health conditions by 2023. The plan will also confront some of those practical obstacles that survivors often face, including in resuming their employment and in unfair treatment for patients in accessing financial services, even after long remission. So, re-skilling and upskilling programs will help cancer survivors re-join the labor market, and practices in the grant of loans or insurance cover will come under scrutiny. A specific chapter of this plan will look at the business practices of financial service providers "to ensure that only necessary and proportionate information is used when assessing the eligibility of applicants for financial products," with a particular emphasis on what is known as "the right to be forgotten."
The inclusion of these concerns in the EU's cancer plan—and in the parallel Cancer Mission the EU is also developing—is in part the result of a determined campaign driven over recent years by Doctor Françoise Meunier, a distinguished oncologist in her own right, and the widely-respected former head of the European Organization for Research and Treatment of Cancer. The challenges implicit in survivorship have preoccupied her since she retired from EORTC in 2015, and the plan has given formal status to these issues. Now, with those who are cured as the victims of unjustified discrimination, Meunier is concentrating on protecting them from being unfairly judged on the basis of a past which effective treatment has relegated to irrelevancy.
She told ACT that the way ahead is being shown by the adoption in four European countries of a legal framework outlawing such discrimination. "Today, the vast majority of cancer survivors across Europe are confronted with daily discrimination which sees them blocked from being able to secure the loans and mortgages they need to pursue their lives," she says. "Given the growing number of cancer survivors in Europe, we now have over 14 million reasons to discuss not only the need for an EU approach to the Right to be Forgotten but also the implementation of a right which has now been widely recognized by European policymakers." On February 19, she is organizing an event—'14 Million Reasons to Discuss Life after Cancer'—that will highlight progress and continuing challenges in implementing the right to be forgotten across Europe. It's a bit of a step away from the core interests of ACT readers—but it's an issue that affects a lot of people who ACT readers have helped to get where they are.