Committee Opinion | Doc. 15230 | 23 February 2021

Discrimination against persons dealing with chronic and long-term illnesses

Committee on Equality and Non-Discrimination

Rapporteur : Ms Béatrice FRESKO-ROLFO, Monaco, ALDE

Origin - Reference to committee: Doc. 15011, reference 4487 of 27 January 2020. Reporting committee: Committee on Social Affairs, Health and Sustainable Development. See Doc. 15208. Opinion approved by the committee on 26 January 2021. 2021 - Second part-session

A. Conclusions of the Committee

1. The Committee on Equality and Non-Discrimination unreservedly supports the draft resolution proposed in the report of Ms Martine Wonner (France, ALDE), rapporteur of the Committee on Social Affairs, Health and Sustainable Development.

2. The Committee commends the rapporteur's commitment to gaining recognition of the adverse effects of chronic and long-term illnesses on patients' lives, including in cases where they have overcome such illnesses. It is important to highlight the multiple forms of discrimination to which people suffering from chronic or long-term illnesses may fall victim so that these can be addressed.

3. The draft resolution as adopted by the Committee on Social Affairs, Health and Sustainable Development must be supported. That said, the Committee on Equality and Non-Discrimination wishes it to more strongly reflect the principles of equality and non-discrimination which lie at the core of its terms of reference. The proposed amendments are put forward to that end.

B. Proposed amendments

Amendment A (to the draft resolution)

In paragraph 2, after the words “They are a source of”, insert the word “multiple”.

Explanatory note

Persons suffering from chronic and long-term illnesses may be victims of multiple forms of discrimination, whether during their schooling, in the workplace or while job-seeking. This multidimensional aspect could be reflected in the draft resolution.

Amendment B (to the draft resolution)

In paragraph 3, after “disabilities.”, add the following sentence:

“It makes full and effective participation and inclusion in society a priority.”.

Explanatory note

The United Nations Convention on the rights of persons with disabilities is an innovative legal instrument in that it makes inclusion a priority that must guide all policies aimed at supporting people with disabilities.

Amendment C (to the draft resolution)

In paragraph 4, after the word “obstacles”, add the words “and discrimination”.

Explanatory note

Not only do persons suffering from chronic and long-term illnesses face obstacles and barriers in their day-to-day dealings but they also fall victim to discrimination, which infringes the principle of equality.

Amendment D (to the draft resolution)

At the end of paragraph 4, after the words “reasonable accommodation”, insert the following words:

“and the principles of equality and non-discrimination”.

Explanatory note

Inserting an express reference to the principles of equality and non-discrimination might provide greater clarity at the end of this paragraph.

Amendment E (to the draft resolution)

In paragraph 5, after the words “social disadvantage”, add the words “and discrimination”.

Explanatory note

The main focus of this report is discrimination against persons suffering from chronic and long-term illnesses. Non-discrimination is one of the key principles of the Convention on the Rights of Persons with Disabilities (Article 3 of the Convention).

Amendment F (to the draft resolution)

In paragraph 6.1, replace the word “vulnerabilities” with the following words:

“the taking into account of vulnerabilities”.

Explanatory note

Vulnerabilities should be taken into account when devising general and public health policies, which will make them more effective.

Amendment G (to the draft resolution)

In paragraph 6.2., after the words “return to work.”, insert the following sentence:

“Adaptation of the workstation should be offered where possible”.

Explanatory note

Applying the principle of reasonable accommodation makes it possible, for example, to adapt the workstation to difficulties. This principle is a means of guaranteeing fair treatment.

Amendment H (to the draft resolution)

In paragraph 7, replace the last sentence with the following sentence:

“It calls on the national authorities not only for the adoption of a clear definition of the right to be forgotten but also for the effective and uniform implementation of this protection. It recommends the evaluation of patient protection systems.”

Explanatory note

The right to be forgotten prevents some forms of discrimination. Implementing this right enables those who so wish not to have to declare that they have had a certain illness in order not to be penalised when they seek insurance for a loan for a professional or personal project.

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 [(1) “Les services de santé: lieu d’un racisme méconnu” [“The health services: where hidden racism lurks”], Marguerite Cognet, 2020, CAIRN.]. Medicine and treatments in general are still designed by and for men, [(2) “Why does medicine treat women like men?”, Anna Moore, The Guardian, The Observer, 24 May 2020.] 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. [(3) “Le lundi j’apprends que j’ai un cancer, le jeudi je suis virée!” [“Cancer diagnosis on Monday and sacked on Thursday”], Rose Up, 12 March 2020.]

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. [(4) Report on behalf of the social affairs committee on the bill seeking to open the labour market to diabetics by Ms Agnès Firmin Le Bodo, French National Assembly, France, 22 January 2020 and “Est-il interdit aux diabétiques d'être ingénieur des mines ou policier?” [“Are diabetics barred from being mining engineers or policemen?”], Libération newspaper, 9 January 2017.] 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. [(5) “Pour les malades, obtenir un crédit reste une épreuve” [“Getting a loan remains an ordeal for people with illnesses”], Le Monde newspaper, 10 October 2017.] Belgium, France and Luxembourg [(6) “Introduction au Luxembourg d’un droit à l’oubli pour personnes guéries d’un cancer” [“Luxembourg introduces the right to be forgotten for cancer survivors”], Santé.lu, 29 October 2019.] 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.