Recovery beyond treatment: the right to be forgotten for people with cancer in lower-resource settings

Prisca Githuka was diagnosed with triple-positive breast cancer in 2014, at a time when she was working in development and community projects in Kenya and the wider East Africa region. During her treatment, she struggled to meet the costs of medication, and faced dismissive attitudes about her prospects.

“When I told my employer that I needed time off for radiotherapy, I was put on unpaid leave,” she said in a discussion with UICC. “The attitude was, why waste money on somebody who is going to die anyway?” During adjuvant therapy, she would travel overnight by bus from Kampala to Nairobi every three weeks for infusions, returning Sunday night to be at her desk Monday morning.

Since finishing treatment, she has faced continuing health effects such fatigue and gastrointestinal issues, which employers are often reluctant to accommodate.

She has now become deeply involved in cancer and noncommunicable disease advocacy, notably as Vice Chair of the Kenyan Network of Cancer Organisations (KENCO), a UICC member, Chair of its advocacy, education and research committee, and leading the Cancer Survivors Association of Kenya. She also founded the Pink Hearts Cancer Support Foundation, an organisation that focuses on breast and gynaecologic cancers. Globally, she is a member of the patients advocates working group of the European Society of Medical Oncologists (ESMO) and member of the advisory committee of Our Views, Our Voices, an initiative of the NCD Alliance.

Similarly, Chris Cheng currently serves as President of the Society for Cancer Advocacy and AwareNess (SCAN) Kuching, also UICC member, working on cancer awareness, survivor support and policy change. Since ending his treatment for cancer in 2017, he has spoken publicly about being denied private health insurance, despite being in remission. Even when he through a banking app, Chris denied coverage immediately after he acknowledged a past cancer diagnosis.

“This pattern of insurance exclusion is rooted in assumption rather than risk assessment,” Chris told UICC. “I have applied for new private coverage post-treatment and have been turned down simply because I had cancer, even when applying years later, and even for unrelated health risks. Secondary cancers unrelated to the original disease also tend not to be covered.”

Secondary cancers, he notes, also tend not to be covered. Though Malaysia has public healthcare, private insurance is often needed for timely or extended care; being denied that safety net puts survivors at financial risk.

Prisca Githuka and Chris Cheng are among a growing number of individuals in lower-resource settings who are taking an interest in the emerging legal concept of the “right to be forgotten” as it applies to cancer. The principle – already recognised in some European countries – would limit the use of past cancer diagnoses in decisions related to insurance, loans or employment, once a person has completed treatment and a set number of years have passed.

In both Kenya and Malaysia, however, the right remains largely absent from public or legislative discourse. It has not yet become a focal point for advocacy, in part because of more pressing system-wide concerns, but also because limited staff and funding often leave organisations focused on immediate service delivery and policy gaps in treatment access.

In both countries, public health coverage exists but access can be inconsistent and coverage is narrower than in high-income countries. Denial from private insurers therefore has greater practical consequences than in many high-income settings.

When Prisca entered advocacy, she focused on ensuring that Kenyan health insurance schemes include cancer treatment. She joined other advocates in organising petitions media briefings, and peaceful protests at the Ministry of Health and NHIF, as well as directly engaging with officials to press the case.

These efforts contributed to the design and inclusion of an oncology package within Kenya’s National Health Insurance Fund, which later migrated into the Social Health Insurance Fund. She observes that many rural patients still struggle to access benefits because health facilities are poorly linked with government bureaucracies. “People are told they have exhausted their coverage when they haven’t. Many stop treatment because they think there’s no more help,” she said.

Prisca sees the potential value of legislative change to cover the ‘right to be forgotten’, and has begun gathering evidence of discrimination in insurance and employment to help shape a national conversation. She is trying to push legal reform to recognise survivors as having disability status, which could offer anti‑discrimination protection and social support.

She is also building alliances inside Parliament, and has identified a champion in the National Assembly to help table reforms and is gathering testimonies and data to support the case.

Chris likewise describes the concept as still in its infancy in Malaysia, both within civil society and among policymakers. “Advocates themselves need to be educated on the concept before they can even begin communicating it,” he said.

He observes that the issue often goes unremarked because it overlaps with broader survivorship and access challenges. “It’s definitely not the biggest gap,” he told us. “But it’s beginning to shift. I’ve been hearing more issues about work and employment.”

Chris suggests that childhood cancer survivors – now entering adulthood and seeking jobs, loans and insurance – may become a catalytic voice. “They’re the ones now applying for insurance and encountering barriers. They could become strong advocates for this right,” he said.

Even in systems prioritising access to and financing of diagnosis, treatment and care, the need for a “right to be forgotten”, to recognise recovery in law and practice, is increasingly being raised. Both Prisca and Chris agree that entry points need to be a few concrete issues, such as insurance forms or hiring checks, where evidence can be collected and taken to policymakers at a pace organisations can manage.