Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Gilliosa Spurrier Bernard is the founder of MelanomeFrance, an organization dedicated to educating patients about melanoma prevention, detection, and treatment. She is also a core member of the Melanoma Patients Network Europe (MPNE). Gilliosa’s husband has stage IV melanoma. She lives in Auvergne, France. Gilliosa completed training as a fellow of the European Patients’ Academy.
My advocacy story
I became a patient advocate in 2014 after my husband was diagnosed with stage IV melanoma. Until recently, there were few treatment options if melanoma was not caught in the early stages. Since 2012, targeted therapies and immune checkpoint inhibitors have become important new treatments for melanoma. While they offer promise, they also have complicated side effects and treatment plans. I quickly realized that even though the French health care system was considered among the best health systems by the World Health Organization, all patients did not have access to the same treatments and quality of care.
My first efforts with MelanomeFrance were to translate abstracts and research for French patients, many of whom were not proficient in English. We should not underestimate how much information is only published in English, making it difficult for non-English speakers to be informed about their disease and the latest research.
We also started a monitored forum for patients and caregivers to inform and support those with melanoma. We are extremely strict that any information shared within the forum comes with a source or reference, and we only allow information coming from reliable, highly regarded publications. This helps people develop a habit of seeking and sharing accurate and reliable information on cancer.
We also collaborate with other organizations, including the Melanoma Patient Network Europe (MPNE), where we actively contribute to projects and share information with other European countries.
Tips for advocating in Europe
Advocates play a key role in making sure patients have a voice in cancer research and care. Here are some things every advocate should keep in mind:
Collaboration is key. Joining forces with organizations, such as what we’ve done with MPNE, allows us to collect data, initiate research projects, and collaborate with other stakeholders in patient care. This also avoids duplicating efforts across Europe. European health care systems aim to treat all patients fairly and equally provide access to treatments and health care, and our collaborations can help them meet those goals.
Be informed. Collaborating with other countries requires an understanding of how health systems work at both the country level and European level. Patient advocates need to understand how medicine is approved and accessed by patients. This process starts with the development of treatments by the pharmaceutical industry and researchers. Then, the medicine requires regulation and approval by the European Medicines Agency. Each country also provides an evaluation and economic assessments of new medicines. The final steps include decisions on reimbursement for clinicians and access for patients. Delays at the bureaucratic level can prevent a patient from accessing a life-saving treatment, so advocates must be aware of all stages.
Get involved with treatment evaluations. Patient organizations in France now have permission to help evaluate new immunotherapies and targeted therapies. This means patients have a voice in whether a new medicine brings value to them. As an advocate, find out how you can help your government find solutions to managing the needs of people with cancer.
Educate patients. Cancer research and new treatments are informed mainly by data from patients. We want patients to be educated and confident in identifying what’s important for their quality of life and what research is necessary. An educated patient is useful not only to themselves in how they cope with their illness, but also to everyone else involved in cancer care.