EADV’s and ECPC’s Action Brief Launch.
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Brussels, 15 October 2020 – The European Academy of Dermatology and Venerology (EADV) and the European Cancer Patient Coalition (ECPC) launched the Action Brief after the follow-up virtual workshops of the Multi-Stakeholder Summit on Occupational Skin Cancer (OSC) took place this week. In the Action Brief, more than 30 representatives of patient advocacy groups, workers unions, occupational safety and health professionals, social security representatives, dermatologists and oncologists outline the main barriers that prevent health professionals from reporting non-melanoma skin cancer (NMSC) by solar UV radiation at the workplace as an occupational cancer which affects access to treatment and care. The Action Brief highlights the possible solutions, and the importance of awareness campaigns aimed at policymakers as much as the general public, how health education can be better integrated into national health policies, and what place occupational skin cancer should hold in the upcoming Europe’s Beating Cancer Plan.
Over the course of two virtual workshops which took place on 8 and 12 October 2020, the participants discussed the key priority areas for action and voiced the need for perseverance in efforts to meet the needs of patients suffering from NMSC. As the livelihoods of millions of workers around Europe are affected, the economic costs of OSC, and in particular NMSC, continues to grow, with governments and healthcare systems facing significant growing economic pressure. Legislative protection of outdoor workers is still to provide for globally adequate prevention measures, diagnosis and effective treatments for NMSC and OSC overall.
In her contributions to the workshop, MEPs Miriam Dalli (S&D, Malta), member of the Special Committee on Beating Cancer noted, “I look forward to a cancer plan that has a patient-centred approach and that allocates the necessary funding for research, drives development, increases cancer screening and importantly supports patients and survivors.”
“I want to ensure that we take into account all factors that can help us pave the way forward to combat cancer in the European Union.”
Addressing the participants MEP Alessandra Moretti (S&D, Italy), member of the Special Committee on Beating Cancer, was very clear that the European Parliament does not want “another empty shell”.
Expressing her concern for the budget proposals from the Council, she warned that without adequate budget and resources programmes and plans risk creating expectations without having the tools to solve problems. “The space for an EU wide plan against cancer is enormous but this process has just started and in order to work further, we need a clear strategy and appropriate resources,” added MEP Moretti.
Antonella Cardone (Director, ECPC) reminded that patients need to be at the centre of advocacy efforts and stressed that patients voice must be heard as they are the best placed to advocate for themselves. “We need to increase health literacy to truly empower patients, either through information or awareness raising campaigns, to support patients in engagement with policy makers and with the policy-making process,” emphasized Cardone.
Swen Malte John (Chairman, Department of Dermatology & Environmental Medicine, University of Osnabrück; Chair of the EADV Task Force on Occupational Skin Disease) warned that national academic institutions and dermatological societies need to play an active role and highlighted that “We need much more from the policy makers and legal regulation: prevention, screening and assuring access to treatment for NMSC must be part of cancer and occupational skin cancer policy. We need to do more to assure essential support and protection for high-risk workers exposed to UV in order to stop the NMSC silent epidemic.”
The exact disease burden of NMSC remains worryingly unclear in many European countries due to a dearth of registries and lack of accurate data on patients. Beyond being simply a health system issue, the inadequate registration and coding of patients means that an unknown number of those affected are left without access to treatment and necessary care. In order to improve registration, it is necessary to boost case notification rates by encouraging doctors to notify cases even when incentives are missing or NMSC is not recognized as an OSC.
The Action Brief published today continues the efforts of the OSC community started at the Multi-Stakeholder Summit on OSC launched last year in Paris, where a Call to Action was issued. This urgent call to address the unmet needs of NMSC patients asked for coordinated and joined action of policy-makers, physicians, employers, workers and patient advocacy groups, and remains a priority path to much-needed change for the OSC community.
ENDS
NOTES TO THE EDITORS
On Non-Melanoma Skin Cancer
Comprised of cutaneous squamous cell carcinoma (CSCC) and basal cell carcinoma (BCC), non-melanoma skin cancer (NMSC) is the world’s most frequently diagnosed cancer, with an estimated 7.7 million cases newly diagnosed every year,1 increasing by 3-8% annually.2,3 In 2018 alone, NMSC is estimated to have caused 65,000 deaths globally.4 Despite being one of the most common occupational diseases (OD) in Europe, it is yet to be widely recognized and recorded as such. While the prevalence of the disease is continuously increasing, patients are still left behind by healthcare systems, with prevention efforts, screening and access to treatment and care needing significant improvement.
On the European Academy of Dermatology and Venerology (EADV)
EADV is the leading community to further the knowledge of health professionals and advocates in the field of dermatology and venereology.
We are dedicated to advancing patient care, education and research by providing a unique platform to bring people together and share ideas.
On the European Cancer Patient Coalition (ECPC)
ECPC is the largest European cancer patients’ association numbering more than 450 members across all 27 EU Member States, and many other European and non-European countries, representing those affected by all types of cancers, from the most common to the rarest.
For any media inquiries, please contact:
Paulina Gono, ECPC - paulina.gono@ecpc.org
1 Fitzmaurice Ch, Abate D, Haghmeh A, et al. Global, Regional, and National Cancer Incidence, Mortality, Years of Life Lost, Years Lived With Disability, and Disability-Adjusted Life-Years for 29 Cancer Groups, 1990 to 2017. A Systematic Analysis for the Global Burden of Disease Study. JAMA Oncol 2019;5(12):1749-1769. doi: 10.1001/jamaoncol.2019.2996.
2 John, SM et al. (2016) CONSENSUS REPORT: Recognizing non-melanoma skin cancer, including actinic keratosis, as an occupational disease – A Call to Action. JEADV. Doi: 10.1111/jdv.13608.
3 Didona et al. (2017) Non-Melanoma Skin Cancer Pathogenesis Overview. Biomedicines. Doi: 10.3390/biomedicines6010006.
4 Bray F, Ferlay ME, Soerjomataram I, Siegel R, Torre LA, Jemal A (2018) Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: A Cancer Journal for Clinicians 68 (6). Doi: 10.3322/caac.21492.