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Discrimination against persons dealing with chronic and long-term illnesses

Resolution 2373 (2021)

Author(s):
Parliamentary Assembly
Origin
Assembly debate on 21 April 2021 (13th sitting) (see Doc. 15208, report of the Committee on Social Affairs, Health and Sustainable Development, rapporteur: Ms Martine Wonner; and Doc. 15230, opinion of the Committee on Equality and Non-Discrimination, rapporteur: Ms Béatrice Fresko-Rolfo). Text adopted by the Assembly on 21 April 2021 (13th sitting).
1. Chronic and long-term illnesses are non-communicable diseases that require treatment that is often lengthy and expensive for the community. They are the main causes of general and premature mortality. They alter the lives of at least a third of Europe’s population. This share increases with age as these diseases more frequently strike the most vulnerable. They are more common in women than in men and are particularly frightening when they affect children. The prevalence of multi-morbidity is increasing owing to the ageing of the population, but also to the combined effects of poverty, pollution and global warming.
2. Chronic and long-term illnesses are obstacles to dignity, well-being and self-fulfilment. Often difficult to diagnose, they can be particularly debilitating in their most critical forms if not fatal. They are a source of multiple discrimination and hinder sufferers, who may be deprived of their autonomy, their participation and their full integration into society. Because of their direct and indirect effects, they harm the “full and equal enjoyment of all human rights and fundamental freedoms”, fall within the scope of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and involve obligations on the part of the States parties to this convention.
3. Through their various public policies (health, social, research, employment, education, etc.), national authorities are able to limit the incidence and consequences of chronic and long-term illnesses. The CRPD offers an innovative vision of disability. It makes full and effective participation and inclusion in society a priority. Some countries have indeed taken up this challenge by applying different strategies. Others have chosen to deny the existence of these diseases, at the risk of leaving patients to face their vulnerabilities and maintaining inequalities.
4. As chronic and long-term illnesses are not the result of a reasoned choice either, it is not acceptable that they are considered as risk factors by certain actors in society. To fight against the arbitrariness suffered by patients, it is necessary not only to adopt the paradigm shift proposed by the CRPD, but also to systematically tackle the obstacles and discrimination caused by these diseases, which prevent patients from living their lives in pursuit of a common objective: the preservation of their dignity and well-being. The voice of patients must be heard throughout the preparation, implementation and evaluation of public policies related to chronic and long-term diseases. Equality does not suffice for patients whose wish is primarily to preserve their right to well-being and self-fulfilment. It is not for sick people to adapt to society, but for society to adapt to them, with due regard for reasonable accommodation and the principles of equality and non-discrimination.
5. Every individual should have access to well-being, without hindrance. In order to remedy the profound social disadvantage and discrimination experienced by people suffering from chronic and long-term illnesses, the Parliamentary Assembly reminds Council of Europe member States of the commitments they made on ratifying the CRPD. It invites them to continue their efforts in the fight against exclusion, by adopting strategies that recapture the spirit that drove the emergence of public health systems in Europe and are aimed at strengthening the role of the welfare State, in order to improve the effectiveness and resilience of health systems, and ensuring universal access to health. The current health crisis has acted as a reminder that administrations must be prepared to respond to the unexpected, while being attentive to changes in society and doing away with obsolete regulations. The Assembly invites Liechtenstein to accede to the CRPD so that no European country remains outside this framework, which is innovative and geared to the needs expressed by people encountering obstacles in their immediate social and physical environment.
6. The Assembly urges member States, on the basis of the provisions contained in the CRPD and examples of good practice resulting from co-operation between peers:
6.1 to strengthen capacities for screening and prevention with respect to chronic and long-term illnesses and to adopt a holistic approach, which is regularly reviewed and adjusted and involves all sectors of the administration to promote the well-being of individuals, fight against inequalities and take vulnerabilities into consideration. The authorities must fight against diagnostic delays so that, after a certain period, which should not be longer than one year, each patient is able to exercise their rights again without hindrance;
6.2 to support and develop the offer of care and services for the preservation of well-being and self-fulfilment, while allocating sufficient resources and funds to achieve this objective, which is legitimate for everyone within the jurisdiction of the European Court of Human Rights, in particular when it comes to the professional sphere, by strengthening the resources of occupational medicine units whose staff are often the patient’s first point of contact at the time of diagnosis or return to work. Adaptation of the workstation should be offered where possible. The Assembly calls once again on national authorities to establish access to universal healthcare;
6.3 to ensure that the obstacles preventing chronic and long-term patients from exercising their legitimate right to dignity, well-being and self-fulfilment are subject to sufficiently dissuasive sanctions to enable patients to exercise their rights to well-being and fulfilment, in their professional or private life;
6.4 to conduct, in partnership with civil society, factual and effective awareness-raising campaigns on chronic and long-term illnesses among the general public, ensuring the right to a normal life through the full enjoyment of human rights and fundamental freedoms;
6.5 to involve all stakeholders in policy development, evaluation and implementation, including people with chronic and long-term illnesses and their families, including by sharing the results of impact evaluations. The real consequences of certain diseases still seem too little known (Lyme disease, etc.).
7. The Assembly suggests that member States do more to oversee the removal of obstacles to the rights of patients living with chronic and long-term illnesses, in order to encourage actors in the private sector to share the same approach to combating discrimination suffered by patients because of their status. It calls on national authorities not only to adopt a clear definition of the right to be forgotten but also to implement this protection effectively and uniformly. It recommends the evaluation of patient protection systems.
8. The Assembly stresses the important role of parliaments. It invites them to promote the principles contained in the CRPD, to adopt legislation in line with this convention, to ensure the allocation of sufficient budgetary resources, to encourage public authorities to adopt appropriate national strategies and action plans and to demand accountability for their effective implementation. It also encourages parliamentarians to contribute to awareness-raising actions on an individual basis.
9. The Assembly recognises that people with chronic and long-term illnesses and their families are severely and disproportionately affected by the measures taken to combat the novel coronavirus during the current pandemic. Accordingly, it calls on member States to pay particular attention to the needs of these people in view of these circumstances, including after their recovery, insofar as Covid-19 could be the cause of chronic illnesses.
10. Finally, in the context of the Covid-19 pandemic and in anticipation of the revision of Council Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation, the Assembly encourages the European Union to accede to the European Social Charter (revised) (ETS No. 163) before extending its powers in the area of health, in order to monitor and improve the state of health in the European Union. It also reiterates its encouragement to the remaining Council of Europe member States to sign and ratify the revised European Social Charter as soon as possible.