Time for more ambition on bladder cancer policy (Guest blog)
Bladder cancer is Europe’s fifth most common cancer, with more than 200,000 new cases every year across the European Union (EU) alone.1
Despite bladder cancer having one of the highest lifetime costs of any cancer, representing 5 billion euros every year in the EU, bladder cancer research funding is among the lowest.2 On top of this, productivity losses resulting from bladder cancer-associated morbidity and mortality weighs an additional negative impact on European social prosperity and economic growth.3
The impact of bladder cancer is due in part to a lack of awareness around disease symptoms and risk factors associated with bladder cancer. This is true among both the general population and healthcare professionals (HCPs) themselves. The situation is further impacted by high disease recurrence rates, ill-defined treatment and care pathways, and persisting health inequalities. This is particularly true for women, who are more likely to die from bladder cancer than men. Even though men are more commonly affected, women experience worse outcomes, with later diagnoses, greater risk of recurrence and lower overall survival.4
So, this Bladder Cancer Awareness Month, we are activating the community around the theme of “Feeling Unsure? Get Checked” to help address this imbalance and spark conversationsthat raise awareness of bladder cancer and highlight how common symptoms, such as blood in the urine, can be misinterpreted.5 Bladder cancer awareness among general public, patients and healthcare professionals, especially in the primary care setting, can help to overcome barriers to timely and accurate diagnosis.
Recommendation: Support patient groups at the European and national level in advocating for greater bladder cancer disease awareness in primary care settings and among the general public regarding cancer bladder cancer symptoms and risk factors.
Key policy recommendations set out in new White Paper
This year will also see the launch of a joint World Bladder Cancer Patient Coalition (WBCPC) and European Association of Urology (EAU) White Paper on Bladder Cancer. This advocacy resource, aimed at policymakers at both EU and national level, details the key challenges facing patients and carers affected by bladder cancer, setting out key policy recommendations with opportunities to improve the situation for people affected by bladder cancer. Over time, the goal of the White Paper is to promote greater understanding and policy action to address what is often described as the forgotten cancer.
With publication of Europe’s Beating Cancer Plan and upcoming EU elections in 2024, this White Paper aims to inform policymakers across the Member States to consider an EU agenda with more ambitious policy actions targeting neglected cancers, such as bladder cancer, and to close the cancer care gap by ensuring access to timely and accurate diagnosis, high-quality care and treatment.
Recommendation: Strengthen collaboration between EU and Member States’ health authorities to improve access to innovative treatments and recognise the value of incremental innovation.
“It is extremely important for us at the European Association of Urology to work with patients on making recommendations to policy makers at national and European level. Without this, bladder cancer patients do not get the attention they deserve in policies and programmes that impact them. In particular, Europe’s Beating Cancer Plan has the potential to deliver better outcomes for bladder cancer patients and we are delighted to join forces with WBCPC to raise the key issues”. Hendrik Van Poppel, Chair EAU Policy Office
Access to timely diagnosis and care
Bladder cancer is a disease where patients, particularly those in the advanced setting, have high unmet medical needs. However, more than 80% of bladder cancer patients will survive for five years or more if diagnosed early. If diagnosed late, this falls drastically to around 10%.6 Despite positive advancements in other types of cancers, these figures have remained static for bladder cancer.
Recommendation: Facilitate funding from the EU and Member States for developing a reliable risk-based technology to screen bladder cancer patients at an early stage.
Research has underlined that significant unmet informational and supportive care needs persist throughout the entire bladder cancer pathway.7 Indeed, the detection and diagnosis experience of those living with bladder cancer – as well as their caregivers and loved ones – is considered to be one of the poorest of all cancers. They face physical, psychological and emotional burdens associated with treatment and care, from managing the long-term side effects, to workplace / employment adjustments, sexual dysfunction and altered-body image due to bladder removal and living with a urostomy.8
In fact, the WBCPC Bladder Cancer Patient and Carer Survey Report shows that 20% of patients felt their symptoms were not taken seriously at first visit to a doctor and reveals that 57% of respondents were diagnosed with another condition before bladder cancer, the most common being a urinary tract infection (28%). In addition, the same survey shows that 54% of patients were not aware of bladder cancer before diagnosis and 64% of patients were unaware that visible blood in the urine was a sign of bladder cancer.9
As the main symptom of bladder cancer is macroscopic haematuria (blood in the urine), there is a need for strategies to speed up the referral of these patients to a urologist and support research and investment into new detection technologies for bladder cancer.5
In comparison with other tumour types, this lack of recognition and investment in bladder cancer has contributed to a status quo characterised by limited treatment options being available, delayed diagnoses, poorer health outcomes and lower survival rates.
Recommendation: Guarantee that the EU and Member States abide by the revised Council Recommendation on Cancer Screening to invest in developing effective early detection of bladder cancer for at-risk groups.
However, bladder cancer prevalence and the impact on patients, health systems and economies, the level of policy and research commitment has – to date – been disproportionately small. In comparison with other tumour types, this lack of recognition and investment in bladder cancer has contributed to a status quo characterised by limited treatment options being available, delayed diagnoses, poorer health outcomes and lower survival rates.
Time to target neglected cancers
We know that the challenges of timely diagnosis and access to treatments and care have been further exacerbated by the COVID-19 pandemic.10 Yet, despite the increased burden on patients, health professionals and impact on the resilience of EU health systems, cancer remains a key priority for the European Commission as part of ambitions to create a European Health Union. However, policy measures targeting cancer in the EU do not approach all types of cancer equally.
Designing an effective policy response is instrumental in addressing the risk factors of this condition. In the case of bladder cancer, incidence can be particularly impacted by tobacco smoking and exposure to carcinogens in the workplace, both requiring a strong and effective policy response to support cancer prevention.11
Recommendation: Improve legislation in the field of occupational cancer to recognise the link between certain chemicals and bladder cancer explicitly; and include bladder cancer in the list of occupational cancers in future revisions of the EU Carcinogens Directive.
This May Bladder Cancer Awareness Month is a reminder and an opportunity to strengthen the collective voice of patient organisations, health professionals and policymakers to ensure bladder cancer is brought out from the shadows. The epidemiological, economic and societal cost of bladder cancer warrants both urgent policy action and investment in prevention, diagnosis and treatment to ensure we continue to make a real difference for patients across Europe.
Declaration of involvement: The World Bladder Cancer Patient Coalition acknowledges the support of Astellas, Merck and Pfizer. The content of the White Paper remains the sole responsibility of WBCPC.
For more information on the White Paper on Bladder Cancer visit: worldbladdercancer.org
1) World Health Organization. Bladder Cancer GLOBOCAN 2020. The Global Cancer Observatory. Available at: https://gco.iarc.fr/today/data/factsheets/cancers/30-Bladder-fact-sheet.pdf. Last accessed May 2023
2) Richters A, Aben KKH, Kiemeney LALM. The global burden of urinary bladder cancer: an update.World J Urol. 2020;38(8):1895-1904. doi:10.1007/s00345-019-02984-4. Available at: https://pubmed.ncbi.nlm.nih.gov/31676912/. Last accessed May 2023
3) Leal J, Luengo-Fernandez R, Sullivan R, Witjes JA. Economic Burden of Bladder Cancer Across the European Union.Eur Urol. 2016;69(3):438-447. Available at: https://pubmed.ncbi.nlm.nih.gov/26508308/. Last accessed May 2023
4) Cohn JA, Vekhter B, Lyttle C, Steinberg GD, Large MC. Sex disparities in diagnosis of bladder cancer after initial presentation with hematuria: a nationwide claims-based investigation.Cancer. 2014;120(4):555-561. doi:10.1002/cncr.28416. Available at: https://pubmed.ncbi.nlm.nih.gov/24496869/. Last accessed May 2023
5) Ghandour R, Freifeld Y, Singla N, Lotan Y. Evaluation of Hematuria in a Large Public Health Care System.Bladder Cancer. 2019;5(2):119-129. doi:10.3233/BLC-190221. Available at: https://pubmed.ncbi.nlm.nih.gov/31930164/. Last accessed May 2023
6) Cancer Research UK. Survival for Bladder Cancer. Available at: https://www.cancerresearchuk.org/about-cancer/bladder-cancer/survival. Last accessed May 2023
7) Chung J, Kulkarni GS, Morash R, et al. Assessment of quality of life, information, and supportive care needs in patients with muscle and non-muscle invasive bladder cancer across the illness trajectory. Support Care Cancer. 2019 Oct;27(10):3877-3885. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6726665/. Last accessed May 2023
8) Fight Bladder Cancer UK. Surviving bladder cancer. Available at: https://www.fightbladdercancer.co.uk/get-help/living-cancer/surviving-bladder-cancer. Last accessed May 2023
9) World Bladder Cancer Patient Coalition. More than half of people with bladder cancer are misdiagnosed with another disease. Available at: https://worldbladdercancer.org/news_events/press-release-more-than-half-of-people-with-bladder-cancer-are-misdiagnosed-with-another-disease/. Last accessed May 2023
10) Sarkis J, Samaha R, Kattan J, Sarkis P. Bladder cancer during the COVID-19 pandemic: the calm before the storm? Future Sci OA. 2020 Aug 3;6(8). Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434225/. Last accessed May 2023
11) Mayo Clinic (2022), Bladder Cancer, Available at: https://www.mayoclinic.org/diseases-conditions/bladder-cancer/symptoms-causes/syc-20356104. Last accessed May 2023