C Explanatory memorandum by Ms Fresko-Rolfo,
rapporteur for opinion
1. I would firstly like to congratulate
the rapporteur, Ms Martine Wonner (France, ALDE), for the quality
of her report, which brings a much-needed focus onto chronic illnesses
and their impact in the long term. We each of us know someone with
a chronic and long-term illness or have perhaps experienced this
at first hand. This is therefore a topic of general interest which
knows no borders.
2. I wished to prepare a motion for a resolution on this subject
as persons suffering from chronic and long-term illnesses are discriminated
against. After enduring difficulties with their health, they then
face obstacles and discrimination which can prevent them from moving
on and rebuilding their lives through having projects. The consequences
of chronic and long-term illnesses are complex and far-reaching.
It is important to talk about them so that those concerned can be
given the best possible support.
3. The monitoring of persons suffering from chronic or long-term
illnesses reveals various forms of discrimination, based on gender
or race, for example, within healthcare establishments
Note.
Medicine and treatments in general are still designed by and for
men,
Note which
can lead to some problems of diagnosis. This has been the case for
women who have had heart problems. It might be interesting to look
at this question in a future report. It would furthermore be important
to study specific discrimination against persons with HIV in our
societies.
1 Discriminations
in the world of work
4. In this opinion, I am keen
to provide some additional information regarding discrimination
in the world of work. Persons suffering from chronic or long-term
illnesses may encounter difficulties in finding a job. Explaining
a gap in a curriculum vitae is no easy matter and it may be tricky
to describe what might be perceived as a weakness at a job interview.
Mentioning an illness on a CV can penalise a candidate, and a person's professional
profile cannot be reduced to an illness.
5. Furthermore, as the rapporteur has very well explained, workstations
are not systematically adapted when a person returns from sick leave.
Tailored working hours must be negotiated, and specific needs are
not always taken into account. Moreover, not all workstations can
be adapted. Someone suffering from a chronic or long-term illness
may also feel pressure from their hierarchy to return to work quickly
although they have not yet fully recovered. It may also be difficult
to come back to the post they held prior to sick leave. “The adjustment of
working hours is one of the difficulties that comes up most often
when I speak with the association's members, as well as the employer's
acceptance that everything ‘is no longer as it used to be’”, emphasised Valérie
Barilaro, president of the association Ecoute Cancer Réconfort (Monaco)
during a meeting held as part of the preparation of this opinion.
6. Career advancement may be delayed, as well as access to in-service
training. Vocational retraining may be costly. Employees may also
be treated differently depending on the type of work contract they
have. Someone with a chronic or long-term illness employed on a
contract offering no job security will be in a more vulnerable situation
leaving them even more open to various forms of pressure. There
have been instances of non-renewal of contracts for people on temporary
or fixed-term contracts when their illnesses have become known.
Note
7. At the hearing held jointly with the Committee on Social Affairs,
Health and Sustainable Development on 30 September 2019, Ms Liz Egan,
in her capacity of team leader of the Working Through Cancer Programme at
Macmillan Cancer Support (United Kingdom), stressed that continuing
to work gave people a feeling of normality, motivation and a source
of income. Her work in the United Kingdom showed that one-fifth
of those who returned to work suffered some kind of discrimination.
8. The way in which persons suffering from chronic or long-term
illnesses are treated speaks volumes about the type of society in
which we live, where performance is prized above an individual's
welfare. As I have already said, any one of us might fall victim
to a chronic or long-term illness one day. We must guarantee access
to rights, education, employment and housing for all, taking any
specific needs into account.
2 Access to education
9. Children, teenagers or young
adults suffering from a chronic or long-term illness may face difficulties
in accessing education. Children may be tired or sleepy because
of the treatment they are taking, which may affect their concentration
levels in class. Their school timetables must be tailored to allow
them time to rest. Adaptations are necessary so that they can pursue
their studies and not be discriminated against. Access to certain
colleges or study paths has been, or continues to be, closed to
students who have a chronic illness. Among efforts to improve the
situation there have been moves to make France's elite Ecole Polytechnique college
accessible to diabetic students.
Note There is still much progress
to be made in this area.
3 Insurance and
loans
10. As someone who personally knows
people who have found it difficult to obtain a bank loan or insurance following
an illness, I wished to work on this topic and, in particular, on
the question of the right to be forgotten. The right to be forgotten
is a relatively recent notion which enables people who have suffered
from illness to make plans, project themselves into the future and
move on.
11. A refusal to grant an insurance or a loan constitutes a double
punishment for people suffering from chronic or long-term illnesses.
Note Belgium, France and Luxembourg
Note have introduced the right to
be forgotten in the insurance sector. For a person suffering from
a chronic or long-term illness, obtaining insurance cover is very
complicated if not impossible. The right to be forgotten means that
they do not have to declare a cancer that was cured several years
before, for example. However, the number of illnesses covered by
these arrangements is limited and many years must still elapse before
a person can exercise this right.
12. With regard to persons with HIV, Mr. Aeschbach, coordinator
at Fight Aids Monaco, said during our interview on 14 January 2021
that he was regularly asked about “to say or not to say”: “stating
one's HIV status exposes the person either to direct rejection or
to a roundabout means of discouraging them. Whether it is during
a romantic encounter, during a first visit by the occupational physician
for a job, to their colleagues at work and of course when taking
out a bank loan”.
13. Persons with a chronic or long-term illness, or having only
just recovered from one, face difficulties, obstacles and multiple
forms of discrimination. Their illness takes over their lives completely
and constantly stands in their way, not only during the phases of
treatment but also once these have finished. Our societies treat
people suffering from chronic or long-term illnesses as if they
should somehow be held back from personal and professional development
rather than be encouraged. Legislators should tackle this issue
without delay.
