Patients and Discrimination: why it’s time to get involved?Our membership identified tackling discrimination as a new goal in our strategic plan for 2014-2020. The discrimination which patients encounter in various areas of their life is increasingly of concern to patient organisations. The financial and economic crisis has also led to further discrimination of vulnerable groups in accessing healthcare.
The idea that lifestyle factors can cause various chronic diseases is fuelling new concerns over responsibility as regards one’s own health. There is a risk that patients may be stigmatised for having a disease and thus considered a burden on healthcare resources. Many chronic diseases do not result from lifestyle factors and are the result of multiple and complex causes that individuals may have no or limited control over (e.g. genes, social background).
What is discrimination?
Discrimination means a person receives a less favourable treatment and it contributes to placing groups of people at systematic disadvantage with respect to their health status. It is different from health inequalities but there is often a correlation: when health systems fail to meet the needs of a vulnerable group, it can be considered as indirect discrimination.
Patients with chronic diseases encounter discrimination and stigma in healthcare…
The issue of discrimination in healthcare was the topic of an EC session in the European Health Forum Gastein 2013. It made the case for action to tackle the discrimination which still occurs in healthcare in the EU, and for more solidarity towards vulnerable groups.(Link, PDF)
As the population ages, the number of people affected by chronic diseases will inevitably grow, whether these conditions are acquired early in life or in older age. Ensuring all patients in their diverse contexts can benefit from their right to receive the healthcare they need is essential in this context.
We, as patients, face discrimination and stigma in healthcare directly because of our specific diseases, sometimes associated with various grounds. Specific needs may arise according to their age, sexual orientation, religious beliefs but they are often not understood or met by health systems.
Gender imbalance is also a long standing issue as health systems do not always address gender appropriately. Men are more likely to die, at all ages, of all causes of death recorded by Eurostat while women live longer, are more likely to suffer illness and disability in later life.
The EU Fundamental Rights Agency has also reported that undocumented migrants face particular challenges to access healthcare. In some countries they only have access to emergency care. (Link, PDF) It has also be reported that Roma people face issues like refusal of assistance, segregation in health care facilities, and difficulties to access emergency care due to their ethnicity or status.
… and in other parts of their life
Beyond healthcare, patients are affected by discrimination in other areas of their life.
Patients groups are reporting to us that their members face specific difficulties at the workplace and to find and keep a job. This ranges from issues during interviews if they disclose their condition, discriminatory attitudes from employers or colleagues such as lack of support to go back to work after a sick leave, or even side-lining after a long-term absence. There is also a stigma in society as the assumption is often made that patients are unable to work because they have a chronic condition. There is a strong need to integrate their views in social and employment policies to counter this form of discrimination.
Accessing financial services (such as insurances and bank loan) may also be a particular challenge for patients with chronic or long term conditions. They are often asked to pay a higher cost or their disease may be considered a pre-existing condition and may not be covered. The disparities across Europe in this regard are unacceptable and EPF will be undertaking further work to understand better the current situation, good practice, if and where this exists, and strategies for change.
In July 2013, The EPF Youth Group organised the EMPATHY seminar (see dedicated newsletter here) to discuss key issues young patients face in various areas including education. Young patients highlighted they may need to miss courses because of treatments, have difficulty to perform exams because of health condition Teachers and examiners may sometimes be the involuntary cause of discrimination as ‘standard’ rules do not fit all. Administrative rules would need to be adapted to their specific needs to ensure equal access to education.
These examples show the need for wider societal and political action to shift the perspective on patients with chronic diseases as they take part in society and contribute to the economy.
No adequate legal protection
While there are general equal treatment principles in every EU Member States, legal protections for patients currently vary across Europe. In some countries it depends on whether their condition is part or not of the category of “disability” according to the legislation.
EPF believes that all patients with chronic and/or long term conditions should be protected from discrimination on the ground of health status. Such provisions already exist in the legislation of some Member States and need to be replicated across the EU and at EU level.
We strongly believe that our patients’ perspective is essential to target the problem, and identify solutions.
“The voice of patients with chronic and long term diseases needs to be heard in anti-discrimination policies. We believe tackling discrimination is a collective effort, and we look forward to engaging with decision-makers and other organisations that are active in this area to seek solutions together “said Nicola Bedlington, EPF Director.
For more information, please contact EPF Policy Officer Laurène Souchet at firstname.lastname@example.org.