The time of scientific research does not go well with the legitimate expectations of patients, cornered by a disease which shows, each day a little more, the extent of its symptoms. The slightest announcement of a new therapeutic route, still undergoing clinical trials, is interpreted as a “major breakthrough” even a “crucial step”.
This is the term used by the professor of immunology Yves Lévy, in a recent interview granted to the Parisianto talk about the discovery of an AIDS vaccine candidate with “an interesting immune response”.
After forty years of fruitless research, this glimmer of hope is welcomed with all the necessary precautions by the scientific community and association leaders. The profusion of optimistic messages in the general press sometimes fuels expectations, which are disappointed a few months later when the last stages of the experimental protocol fail.
“It is difficult to hold it against doctors to show their enthusiasm when they obtain promising results when we are the first, as patient associations, to seek information that brings hope”, recognizes Claude Coutier, president of the collective Triplettes roses, which brings together women with breast cancer.
Strict caution until the end of the protocol
Nevertheless ” them extremely strict rules that govern the conduct of a clinical trial are not well suited to publicity effects to attract the attention of investors”, estimates the professor of public health at the Lille University Hospital Philippe Amouyel.
Scientific rigor obliges, Yves Lévy himself recognizes that, at this stage, a major unknown remains as to the reaction of the body in the event of real exposure to HIV. To decide this question, it will be necessary to wait two to three years, the time for a third phase of tests to be conducted with so-called “at risk” populations.
Vigilance is required for the professor at the Pasteur Institute Michaela Müller-Trutwin, who lists the disappointments in research against AIDS. “In 2016, a large-scale experiment had involved more than 5,400 volunteers in South Africa for four years, she remembers. This attempt to induce broad-spectrum neutralizing antibodies, particularly effective against strains of HIV, was promising until it ultimately proved disappointing.. »
Transparency towards patients, obligation of the researcher
Another setback for research, a few days ago: a clinical trial conducted in the United States on a monoclonal antibody supposed to target beta-amyloid, proteins that would trigger Alzheimer’s disease. After encouraging beginnings, two strokes in quick succession among the 900 people tested came to qualify the hopes around this molecule.
“The important thing is to communicate correctly”, insists Claude Coutier. Suffering from breast cancer, this 50-year-old knows something about it: in 2019, at the time of her recurrence, she benefited from early access to a new drug combining an antibody and chemotherapy, Trodelvy. “If the arrival of Trodelvy saves six months of life, six months to hope to find a curative therapy, it only works for 35% of patients treated”, she specifies.
Finding the balance between message of hope and haste
“There is a balance to be found for the media between a discourse of hope and a discourse needlessly euphoric”, abounds Marc Dixneuf, general manager of Aides, an association fighting against the AIDS virus. He warns against “untimely announcements from isolated researchers, every December 1, at the time of Sidaction”.
Defender of the involvement of patients and their relatives in research on neurodegenerative diseases, Philippe Amouyel considers for his part that the restitution of the conclusions to the general public “is part of the obligations of the researcher, liable for the public funds that finance his investigations”.
To do this, Claude Coutier suggests always focusing on tangible results. “A revolution for the medical profession is not necessarily a revolution in the lives of patients”she insists.