This is a huge disappointment for many, as the patient rights law, which has carved health democracy in stone, is celebrating its 20th anniversary. Citizens have been little or not consulted or involved in the management of the Covid crisis, while the government has restricted rights in the name of health protection. This severe and unanimous observation did not only concern our country.
From the start of the pandemic, in the spring of 2020, the president of the scientific council, Professor Jean-François Delfraissy, who is also at the head of the National Consultative Ethics Committee, has several times called for the participation of citizens. The scientific council certainly quickly integrated a person from civil society, Marie-Aleth Grard, vice-president of ATD Fourth World, but no representative of patient associations. Similarly, a citizen collective on vaccination, made up of 35 people, was set up in early 2021 by the Economic, Social and Environmental Council, but this committee, whose work ended in September, seems to have had little impact on the decisions.
Fragility of rights
” Of course, this health crisis has shown that the value of health is essential, but the institutions of health democracy have been swept away during the crisis.judge Gérard Raymond, president of France Assos Santé. However, relations have been constant with the Ministry of Health and the Director of Health Insurance. »
Emmanuel Rusch, President of the National Health Conference (CNS), an advisory body which has produced several opinions calling at “essential strengthening of democracy in health is on the same line. “The health crisis has reminded us of the fragility of rights and mechanisms. The place of patients, citizens and civil society has been forgotten,” he observes. At the cost of serious consequences. The CNS evokes “shortcomings” to equal access to health services, resulting in a strong renouncement of care, particularly among the most vulnerable.
This diagnosis is shared by the Ile-de-France Ethics Area, which has just published a online survey of its network. “People don’t have (…) could not access care in time and died alone at home,” raises for example the body of reflection. Respondents to this survey consider that a certain number of fundamental rights of the law of March 4, 2002 have been “scorned” during the pandemic, in particular the right to free and informed consent, to the protection of health, to respect for dignity and even to respect for private life.
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