In 2016, patients’ fears crystallized around access to innovative and expensive treatments, revealed the latest CISS barometer.
“Rights of the sick: some shadows on the board! This is the observation drawn up by the Interassociative Collective On Health (CISS), which brings together 42 patient associations.
Indeed, if the 2016 CISS barometer on patients’ rights (1) shows a certain stability in the feeling of the French to be rather well informed about the health system and to consider their access to care well applied (81% of our fellow citizens), it also reveals two downsides, writes the Collective.
First of all, the fears expressed by nearly 40% of French people as to the sustainability of this access for all to care concerning innovative and expensive drugs. This is particularly the case at the moment with new treatments against hepatitis C, which make it possible to cure this transmissible disease. They could, however, put an end to an epidemic affecting more than 300,000 people in France.
Coercion towards laboratories acclaimed
Another proof that this subject really concerns our fellow citizens, more than half of those questioned (55%) have already heard of the very high prices of certain innovative treatments which could make it impossible for them to reach as many people as possible. As such, they are nearly 4 in 10 to fear that Social Security will not cover costly innovative treatment if they ever had a vital need.
Finally, while they believe that pharmaceutical laboratories should be allowed to finance their share of therapeutic research, a very large majority (85%) believe that the public authorities should impose on manufacturers prices that are sustainable by social security. A request which echoes in the news of Harvoni, successor of Sovaldi in the treatment of hepatitis C. Effective up to 99%, its price is astronomical: 46,000 € for a treatment of 12 weeks!
The list of unrecognized rights is growing
But access to medicines is not the only subject of concern for patients, the CISS noted the persistence in the opinion “of a lack of knowledge of certain rights in connection with the support and autonomy of people in their therapeutic choices during their treatment, in the event of a problem related to care and at the time of end of life ”. The many still unrecognized rights are thus on the rise.
Among them, the right to write “advance directives” for the end of life in the event that one is no longer able to express them, which 27% of French people say they do not know; or the right to refuse or interrupt treatment which is unknown to 22% of French people. Ditto for the right to initiate an appeal for compensation in the event of a serious problem related to care, which 30% of French people say they do not know.
“These results show the importance for all players in the health system to develop information for the public in matters of patients’ rights, in particular to respond with the greatest respect for everyone, users and health professionals, to often sensitive issues, ”concludes the CISS.
(1) BVA survey for the CISS, conducted from February 25 to 27, 2016 by telephone with a sample of 1,004 people, representative of the French population aged 15 and over
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