Advocacy & Research

Many young adults who have survived cancer face ongoing discrimination long after their treatment is complete — for example when applying for insurance, taking out credit, seeking civil service positions or starting a family. Although more than 80 % of young adults with cancer become longterm survivors, they are still treated as “risk patients” in everyday life, which can limit their participation in work, finances and social life.

The Right To Be Forgotten aims to ensure that a past cancer diagnosis is no longer used against someone after a reasonable period of time without recurrence, so that survivors have the same opportunities as people who have never had cancer. Under the EU Consumer Credit Directive 2023, member states must implement rules preventing the use of health data for certain insurance and credit decisions after a defined period, but implementation in Germany is currently limited.

The German Foundation for Young Adults with Cancer has been actively campaigning on this issue since 2022, raising awareness, engaging with policymakers and health stakeholders, and publishing official demands for comprehensive legislation that would guarantee a right to be forgotten in insurance, credit, employment and family law. We believe this right should apply after a defined healing period and eliminate discrimination against young cancer survivors.

For a full overview of our campaign around the Right To Be Forgotten and detailed information, please see the dedicated campaign page.

Fertility is a central concern for many young adults diagnosed with cancer. Treatments such as chemotherapy or radiotherapy can threaten reproductive capacity, affecting future family planning. Ensuring access to fertility preservation is therefore a critical part of supporting young adults’ quality of life and long-term wellbeing.

The German Foundation for Young Adults with Cancer has campaigned for years to make fertility preservation accessible and affordable. Thanks in part to the Foundation’s advocacy, key legislative achievements were realised:

• Coverage of costs of fertility preservation under §27a SGB V (since May 2019) by public health insurances for patients whose fertility is at risk from chemo-, radio- or other therapy.

• Cryopreservation of sperm, testicular tissue, unfertilised eggs (from 1 July 2021) and ovarian tissue (from 1 July 2023)

Remaining challenges:

• Costs of egg-stimulation medication for girls under 18 are not covered.

• Storage costs at cryobanks cannot always be billed to statutory health insurance.

Young adults diagnosed with cancer often face significant financial and social challenges. Treatments can interrupt education or careers, limit income, and create additional expenses for medical care and daily living. These pressures add stress at a time when patients are already coping with a life-changing diagnosis, making targeted support essential for wellbeing and recovery.

The Foundation advocates for measures to reduce these burdens, including:

• Exemption or deferral of additional payments for up to six months (in line with the regulation for patients with chronic diseases).

• Flexible bridging payments for those without access to sick pay, such as students, delivered with minimal bureaucracy.

By addressing these financial and social barriers, we aim to help young adults focus on their treatment and long-term recovery without the added strain of economic hardship.