Cancer survivors are living much longer, and the economic problems they face are only now starting to be understood, say European experts. Challenges in returning to normal life, such as accessing jobs, mortgages, loans, and insurance, are made more difficult for individuals who have to declare that they have had cancer.
“There is an urgent need to change our mentality towards cancer survivorship and to form a comprehensive view on long-term follow-up involving medical, physical, and psychological perspectives but also societal and financial ones,” said Francoise Meunier, MD, PhD, director of special projects, the European Organization for Research and Treatment of Cancer (EORTC), Brussels, Belgium.
Pointing out that current research efforts are “fragmented,” she noted: “To move from optimized research to better care, implementation is key. We need to involve many different stakeholders early — not only researchers but also lawyers, insurers, and policy makers.”
Meunier is the editor of a special issue of the Journal of Cancer Policy that includes a series of articles about the challenges faced by cancer survivors. It will be published in March and was launched last week at the EORTC Cancer Survivorship Summit.
Lifang Liu, MD, PhD, senior epidemiologist, Statistics Department, EORTC, who is also an editor of the special issue, echoed Meunier’s comments, saying: “Surviving cancer is more than a medical issue.
“We hope the research in this issue will increase the awareness of the socioeconomic challenges faced by survivors for both researchers and society, which would help to engage various stakeholders to join forces in research, deliver the best care for survivors, and change practice,” Liu said.
Survivors often face socioeconomic problems in addition to ongoing medical problems. For example, they may find it difficult to return to work because of physical limitations, or they may be discriminated against by employers fearful of reintegrating them back into their companies.
Cancer survivors may also face difficulties obtaining health insurance or other financial products, or they may find that such insurance is prohibitively expensive.
Although some countries have tackled the issue through laws that allow cancer survivors not to have to declare their medical history, there is a general lack of data on long-term follow-up, and research is needed to help improve patients’ lives, academics said at the meeting.
“There is an urgent need to change our mentality towards cancer survivorship and to form a comprehensive view on long-term follow-up involving medical, physical, and psychological perspectives but also societal and financial ones,” said Meunier in a release.
Speaking at a press conference held in Brussels to mark the start of the EORTC Cancer Survivorship Summit, Meunier noted that the number of cancer survivors continues to grow, thanks to improvements in cancer care and management.
There were 10 million cancers survivors in Europe in 2012. Inasmuch as 40% of cancers are diagnosed in patients younger than 60 years, many of these survivors are of working age.
She explained that after successful treatment, physicians tell patients, “You’re cured,” but the patients then face a series of challenges that are only now beginning to be fully appreciated.
Meunier noted that these include not only health problems, such as long-term toxicity resulting from treatment, but also societal problems, such as finding or holding onto a job, or obtaining insurance for a loan or a mortgage.
She said that the articles in the special issue and the EORTC summit are intended to raise awareness that “cancer is no longer a death sentence” and that “society has to take responsibility” for the proboems that cancer survivors face.
Lack of Data
The problem is that these issues are currently not well enough known or understood, owing to a lack of data on cancer survivorship.
At the press conference, Liu pointed out that is partly because only in the past 3 decades have cancer patients been surviving long enough to experience such problems.
“This is a new issue coming together with the success that we achieved with cancer patients,” she said.
Another factor hampering knowledge of problems associated with survivorship is that most of the data on long-term cancer survival has come from observational studies, which by their nature do not allow causal relationships to be established.
In response, the EORTC has established a European outcomes protocol, in which high-quality data from EORTC’s randomized clinical studies are linked to population-based registries to obtain information on patient follow-up until death.
Liu hopes that tying together detailed clinical outcomes with long-term data will allow healthcare professionals to manage patients “in a better and more informed way.”
She pointed to the example of the Ludwig Institute of Cancer Research in Belgium, which has linked clinical data from cancer registries with health claims information from the Institut National d’Assurance Maladie-Invalidité. This has provided a socioeconomic context to longer-term survival.
Liu noted, however, that such initiatives are currently possible only in certain European countries.
“In Belgium, it’s a very unique and very established system for such an approach,” she said. “Also, in Nordic countries, they have a unique registration number for each patient, so they can link with various registries to get the whole picture of what the patient experiences after cancer.
“But in other countries, the population-based registers are not there, so we need to go through our network to go to the institution and the hospital, the patient, and also the doctor to have all the long-term data,” Liu said.
Lui believes that through these efforts, it will be possible to build a platform that will bring together all the stakeholders to tackle the issues of cancer survivorship.
Meunier commented: “This is also useful because, when you go to see banks and insurance companies to try to understand how they establish premiums and so on, they say: ‘Give us data.’ “
One of the reasons for establishing the outcomes protocol “is to provide real data and to not establish premiums based on outdated perceptions,” she added.
Right to Be Forgotten
In the absence of survivorship data, some countries have started to confront the issue of discrimination against cancer patients head on.
One example is a 2016 French law establishing the “right to be forgotten.” This law allows long-term cancer survivors in France to not inform insurers of their cancer history.
Specifically, adults have a right to not reveal that they’ve had cancer 10 years after the end of treatment, provided they have not experienced a relapse in the meantime. For cancer patients younger than 18 years, the period is 5 years.
In an article published in the special issue of the Journal of Cancer Policy, Marie Mesnil, PhD, a fellow at EORTC, says that the law stipulates that insurers not take into account a person’s cancer in risk pricing, even if they know about it.
Meunier said that this law “is fantastic, because there is no discussion, there is no compromise and no difficult situations.”
She continued: “Honestly, my dream would be that the French system would be allocated to all European citizens…. Cancer knows no borders, there is no frontier, so why not implement good things throughout Europe?”
However, Meunier is not optimistic that there could be a pan-European solution to the problems faced by cancer survivors.
“The problem is that healthcare is a national matter and not a European one,” she said. There are, however, “areas where the European Union could help,” such as in developing recommendations and in pushing for antidiscrimination measures, she noted.
The authors have disclosed no relevant financial relationships.
Third EORTC Cancer Survivorship Summit. March 1, 2018.
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