Discrimination against persons dealing with chronic and long-term illnesses
- 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.
