Uniting our voices and taking action to close the care gap in cancer

Every year, World Cancer Day is an important time for us to pause and reflect on the pressing issues facing the cancer community. Last year on World Cancer Day, I reflected on the inequities in cancer care and the need to close the care gap. Now, one year later, the theme of World Cancer Day 2023 builds upon this and emphasises that we are stronger when we are united in working to address these ongoing issues; I could not agree more, and so I want to share my own reflections on why this is so important.  

Recognising there are issues has been a key step, but we can only make progress if our voices are as one and if we take proactive action together. 2023 is the second year of a three-year campaign led by the Union for International Cancer Control (UICC) focusing on closing the care gap in cancer. With 2022 having focused on raising awareness of the issues, it is vital that we focus on building strong, effective partnerships this year ahead of the focus in 2024 to drive tangible change amongst leaders.

At Kyowa Kirin International (KKI), we believe passionately in the power of community and collaboration. A particular focus of my role as Executive Vice President of Medical Affairs is to ensure we’re well-placed within the community to forge innovative collaborations. I believe that such collaborations between healthcare professionals, patients, patient groups, regulatory bodies and the pharmaceutical industry mean we can pool our collective knowledge, experience, insights and resources to drive tangible change. We cannot go it alone. This is too important of a challenge. From breaking down barriers to quick and accurate diagnosis, through to driving access to care and treatment, collaboration is absolutely essential and the pharmaceutical industry has a significant role.

In my role at KKI, I work every day in the rare disease space. A lot of this work focuses on Cutaneous T-Cell lymphoma (CTCL), a rare, serious and potentially life-threatening cancer of white blood cells that presents in the skin.[1],[2],[3] CTCL affects 240 people per million in Europe at any one time, and can have a significant, life-long impact upon a person’s life.[4],[5] Despite this, it can typically take three years or more for someone to be diagnosed with CTCL after symptoms appear.[6],[7] This is because CTCL presents very similarly to eczema and psoriasis, meaning many experience a long, frustrating journey before being diagnosed.6 This is simply not acceptable. From this example, and many other rare cancers, it is clear that we must consider the issues associated with rare cancers when uniting our voices and understanding where there is common ground with our partners. We also need to acknowledge the needs of different groups and stakeholders to drive change.

At KKI, we know that breaking down barriers to diagnosis, access and care is key. We have learned over the years that including the patient organisation perspective in the development and review of our patient and carer materials, activities and programmes ensures that unmet needs are met; collaborating with the Cutaneous Lymphoma Foundation has helped us add value for those impacted by CTCL. We use these insights to respond to areas of unmet need and pool our resources with our partners in the community to drive tangible change, as well as help those with CTCL tell their stories in their own words. I’m reminded every time when reading our CTCL Patient Experiences Report of the burden that people living with CTCL face every day, and of the importance of doing all that we can to close the care gap for them.

The three-year close the care gap campaign has been built to inspire change and improve awareness of the inequities faced in cancer beyond World Cancer Day itself. By uniting our voice with all those in the global cancer community and taking action where it is needed, KKI remains committed to closing the care gap in cancer.

References

[1] Willemze R, et al. The 2018 update of the WHO-EORTC classification for primary cutaneous lymphomas. Blood. 2019;133(16):1703-1714.

[2] Cleveland Clinic. Cutaneous T-Cell Lymphoma. Available from https://my.clevelandclinic.org/health/diseases/17940-cutaneous-t-cell-lymphoma. Last Accessed: January 2023.

[3] Girardi M, et al. The Pathogenesis of Mycosis Fungoides. New England Journal of Medicine. 2004;350(19):1978-88.

[4] Demierre M-F, et al. Significant impact of cutaneous T-cell lymphoma on patients' quality of life. Cancer. 2006;107(10):2504-2511.

[5] Orphanet. Prevalence and incidence of rare diseases: Bibliographic data. January 2021. Available at: https://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_alphabetical_list.pdf. Last Accessed: January 2023.

[6] Wilcox RA. Cutaneous T-cell lymphoma: 2016 update on diagnosis, risk-stratification, and management. American Journal of Hematology. 2016;91(1):151-65.

[7] Scarisbrick J, et al. The PROCLIPI international registry of early-stage mycosis fungoides identifies substantial diagnostic delay in most patients. British Journal of Dermatology. 2019;181(2):350–357.