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Before the establishment of the “Right to Be Forgotten” (RTBF) in the Netherlands, cancer survivors faced significant financial discrimination. Many were unable to secure life insurance or had to pay exorbitant premiums due to their medical history. According to a survey by the “Donate your experience” patient panel of the Netherlands Federation of Cancer Patient Organizations (NFK), 6 out of 10 respondents were unable to obtain life insurance. Of these, 62% were refused due to a cancer diagnosis, and a quarter were turned away because the additional costs on top of the basic premium were too high. Even after the critical five-year survival mark, which is a significant milestone in oncology indicating a lower chance of cancer recurrence, half of the respondents still couldn’t secure a life insurance policy. Four out of 10 had to pay additional premiums permanently, sometimes amounting to hundreds of euros on top of the basic premium.
After years of persistent lobbying, NFK achieved a breakthrough in insuring former cancer patients. Collaborating with the Association of Insurers, the Netherlands Comprehensive Cancer Organisation (IKNL), and the Ministries of Finance and Health, Welfare and Sport, NFK used data from the Dutch Cancer Registry to demonstrate that several groups of cancer survivors had mortality rates similar to people who have never had cancer. Previously, insurance companies relied on outdated and predominantly American data to determine eligibility for life insurance, leading to unfair practices. This advocacy led to the creation of a table specifying the number of years each tumour type must be cancer-free before the patient is no longer required to disclose their cancer history to insurers.
The cancer patient organization initiated the action, while IKNL conducted data analyses. Insurers cooperated and revised their policies, ensuring that cancer survivors would pay the same premiums as the general population. Cancer patients are no longer required to inform the insurer about their diagnosis if they have been cured for 10 years or less, depending on the tumour type. For patients diagnosed before the age of 21, they are not obliged to share their cancer diagnosis if they are cancer-free for 5 years. The analyses resulted in several papers published in peer-reviewed scientific journals, further validating the findings.
Enablers: Several factors facilitated the adoption of the RTBF in the Netherlands. Medical progress, as advances in oncology have significantly improved survival rates, making it possible to argue that cancer survivors should not face lifelong financial penalties. There was a growing recognition of the need to integrate cancer survivors fully into society, including providing them with equal access to financial services. Grassroots advocacy with a bottom-up approach, involving patient advocates and organizations like NFK, was crucial in pushing for legislative change. Further, the use of robust data from the Dutch Cancer Registry provided compelling evidence to support the case for policy change.
Despite these enablers, several barriers had to be overcome. Insurance companies initially relied on outdated and non-local data, which did not accurately reflect the current survival rates and risks for cancer survivors in the Netherlands. Insurers were initially resistant to change due to concerns about financial risk and profitability. In addition, changing the law required navigating complex legislative processes and gaining political support.
Lessons learned: The establishment of the RTBF in the Netherlands offers several key lessons: the importance of data: Reliable, local data is crucial in advocating for policy changes. The Dutch Cancer Registry played a pivotal role in providing the necessary evidence. Successful advocacy requires collaboration between patient organizations, medical institutions, insurers and government bodies. Further, media coverage and public support can significantly influence policy changes. Stories of young cancer survivors struggling to find affordable insurance garnered public sympathy and political attention. Finally, persistent lobbying and engagement with policymakers are essential. The involvement of the Dutch Minister of Finance and responses to parliamentary questions were critical in achieving the legislative change.
In conclusion, the establishment of the RTBF in the Netherlands was a significant milestone in ensuring financial equality for cancer survivors. It highlights the power of data-driven advocacy, collaborative efforts and the importance of addressing financial discrimination to improve the quality of life for cancer survivors.
