From cancer culture to cancel culture. Chronicle of a drift

Paris, Saturday, July 17 - The fight against fake news, especially in the health field, seems essential to reinforce the informed consent of everyone and the autonomy of people concerning their health. However, how to avoid that under the virtuous pretext of drawing attention to untruths, some focus first on their messages, sincerely convinced of their relevance and importance, omitting or denying the veracity of certain questions and controversies?

Wouldn't it be paradoxical and dangerous if those who present their work as a deciphering enterprise actually provide partial or even biased information?

On this subject the association Cancer Rose and the collective “Pour une inFormation indépendante en Santé” (Formindep) write to us today.

They alert to the way how the National Cancer Institute (INCa) would not always avoid a form of instrumentalization of the fight against fake news, by preventing by this means that comprehensive information on systematic breast cancer screening is provided.

By Cancer Rose and Formindep

Cracking down on fake news or hindering access to reliable medical information : What's new in France?

The facts

The French National Cancer Institute (INCa) conducted an internet-based "consultation" from September 22 to October 15, 2020. This consultation aimed for participants to vote "for" or "against" 220 proposals developed by the Institute for the new decennial Cancer Plan. Less than 2500 people took part.

One of the proposals is headlined "Set up a device to combat fake news ".

The text is as follows:

"A reactive anti-fake news system will be structured. It will enable people to be enlightened in the face of controversies likely to concern the various fields of cancer: primary prevention, screening, treatments, and complementary care. It is important to better inform public opinion, especially by using data that makes tangible the effects of prevention (international benchmarks, results of studies...). In addition, without being limited to the field of cancer, the creation of a "CSA Health" type system will be studied to implement rules for information in health, provided in a framework agreement with content hosts (media, social networks) to do a work of eliminating fake news identified by a college of experts."

CSA is the French acronym of “Conseil Supérieur de l'Audiovisuel », which is the French regulator of audiovisual.

The reservations expressed by some citizens did not prevent INCa from adopting this proposal with great diligence, based on the 124 voters among the 47.9 million inhabitants registered on the electoral rolls and without any representative power.

The proposal has already been incorporated, in a simplified form, into Decree No. 2021-119 of February 4, 2021, which defines the ten-year national cancer strategy.

In the paragraph "Improving prevention", we read the following sentence, although it is somewhat imprecise: "New devices will be created to combat fake news".

And in June 2021, the INCa launched a new rubric on its website to denounce "fake news", under the title "The Enlightenments".

A fully assumed project to censor information

And there's a bad surprise there, because under the heading mentioned above, "The Enlightenments", the controversy over breast cancer screening is immediately qualified as "fake news", with the following surprising wording: "This scientific debate may have a negative impact on women and turn them away from the screening".

While skepticism is fundamental to any scientist worthy of the name, the INCa succeeds in both censoring all scientific debate and promoting itself in a partisan manner, minimizing overdiagnosis, the central problem of screening, and concealing its serious consequences for women, namely overtreatment, by publishing a pro-screening propaganda text.

Three major concerns

1° Possibility that the INCa will acquire, in future, the excessive power to force internet media and social networks to censor information which the Institute deems unilaterally "fake."

This is frightening because it implies the establishment of authoritarianism in health. Zealous and intolerant defenders of their self-justified "truth" will thus be able to impose their peremptory right-thinking  in a democracy, far from the interests of the population, affirming as an undeniable fact that "Breast cancer screening provides women with a benefit far greater than its risks."

This completely disregards the physical, psychological, and social suffering that women are experiencing due to overdiagnosis and its corollary, overtreatment.

2° Legitimacy of the INCa to provide information is questionable, as is that of taking a right to designate "fake news".

This institute was previously criticized for poor information quality in the 2016 report of the Citizens' Concertation on Breast Cancer Screening.

 It has also been pointed out in two academic studies. In the first study cited, the information disseminated by INCa is compared to that provided by Cancer Rose. Beyond the brief abstract, the study's findings show that the information provided by Cancer Rose is superior to that of the INCa in terms of the criteria for information that must be presented to the public.

The second study, published by Danish authors, denounces INCa's methods for influencing the public to increase screening participation, classified in following systematic categories: “Misleading presentation of statistics” and “Misrepresentation of harms vs. benefits” .

Is it, therefore, legitimate for this Institute to act as a censor and issue injunctions to "eliminate fake news”?

3° Ethical principle of non-maleficence is blatantly disregarded in the new rubric created by INCa

INCa affirms breast cancer screening as having "undeniable benefits for women" .  

The INCa article on breast cancer screening concedes that a certain percentage (though admittedly small) of women will be overdiagnosed and "treated unnecessarily".

Even if there were a massive overall benefit in the women's population, which is not the case, one of the limitations of breast cancer screening is that only some women will benefit, which is at the cost of harm to others.

Such a justification violates the fundamental principle in medicine: "first not harm", since individuals will obviously be harmed following the intervention of health professionals, at the instigation of the INCa, in search for a benefit that is neither certain nor proven. And not universal.

Will INCa's policy become censorship after a propaganda policy to develop screening? It is not possible to guarantee health democracy in our country, where freedom of expression and access to knowledge are fundamental rights, by acting in such an unworthy manner, both ethically and scientifically.

References

1. About the title

https://fr.wikipedia.org/wiki/Cancel_culture

The expression Cancel culture has been variously translated as "culture of banishment", "of cancellation", "of ostracism" or "of ostracization", "of negation", "of annihilation", "of erasure", "of suppression", "of boycott" or "of boycott", "of public humiliation", "of interpellation", "of denunciation"

Thus, on July 7, 2020, in an article published in Harper's and translated in Le Monde, 153 artists, intellectuals and personalities denounced the culture of cancellation and the obstacles to the free flow of ideas and condemned the "intolerance towards divergent opinions".

2 https://consultation-cancer.fr/pages/consultation-resultats-et-apports-citoyens

3 https://consultation-cancer.fr/consultations/axe-1-ameliorer-la-prevention/consultation/consultation/opinions/2-prendre-ensemble-le-virage-preventif/mesures-proposees/mettre-en-place-un-dispositif-de-lutte-contre-les-fake-news

4 www.legifrance.gouv.fr/eli/decret/2021/2/4/SSAP2100774D/jo/texte

5 https://leseclairages.e-cancer.fr/le-depistage-du-cancer-du-sein-est-il-inutile-voire-nefaste

6.        Reference 1 of the article on breast cancer screening in the rubric "The enlightenments” is nothing more than a report from ... the INCa! (1 National Cancer Institute, "Benefits and limitations of the organized breast cancer screening program," 2013)

7.         “Améliorons le dépistage du cancer du sein-concertation citoyenne et scientifique-Rapport du Comité d’orientation,” September 1, 2016. Page 84 and 85 of the consultation report: http://www.concertation-depistage.fr/wp- content/uploads/2016/10/depistage-cancer-sein-rapport-concertation-sept-2016.pdf

"The public consultation.... highlighted the very inadequate information available to women on this screening. And, for those that are specifically intended for them, we note that this information makes no mention of the controversy that it has been the subject of for several years, nor of the existence of a real uncertainty as to the benefit/risk ratio, nor of its limitations, both in terms of its true purpose (in this case, "detection") and its financial coverage.

[8] https://www.sciencedirect.com/science/article/abs/pii/S039876201930522X?via%3Dihub

[9] https://academic.oup.com/eurpub/article-abstract/31/1/200/5902144?redirectedFrom=fulltext

[10] https://cancer-rose.fr/2020/01/02/david-contre-goliath-qui-informe-mieux-les-femmes-cancer-rose-ou-linca/

[11] https://cancer-rose.fr/wp-content/uploads/2021/04/nouveau-tableau.pdf

[12] https://leseclairages.e-cancer.fr/le-depistage-du-cancer-du-sein-est-il-inutile-voire-nefaste/

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

The National Institute of Cancer in France (Inca) relegates the question of the benefit-risk of organized breast cancer screening to the “Fake-news” rubric

https://www.apmnews.com/depeche/53160/369302/l-inca-relegue-la-question-du-benefice-risque-du-depistage-organise-du-cancer-du-sein-a-la-rubrique-infox
Release APMnews, by Virginie Bagouet, reproduced with the kind permission of APM international.

NEWS RELEASE of APMNEWS - Tuesday, June 22, 2021 - 18:48

The National Institute of Cancer in France  (Inca) relegates the question of the benefit-risk of organized breast cancer screening to the "Fake-news" rubric

Keywords: #cancer #public health #Inca #breast cancer #screening #patients-users #revue Prescrire

PARIS, June 22, 2021 (APMnews) - The National Cancer Institute (INCa) is addressing the question of the benefit-risk of organized breast cancer screening in a new "Fake news" website rubric launched last week, APMnews found.

Last week, INCa launched on their website a new rubric : "Information behind fake news". Facing the multiplication of these "infox, fake news or rumors", it is intended to help "seeing in what they are false and better understand the dangers ", explains the president of INCa board of directors, Norbert Ifrah, on the homepage.

The section has been launched on different topics: HPV vaccination and multiple sclerosis, the impact of fasting, diet and food supplements in cancer patients, organic food and bra wearing on the risk of developing cancer.
The one on screening is entitled "Is breast cancer screening unnecessary or even harmful?
The INCa states that the scientific debate about the benefit-risk balance of screening has "a negative impact on women and turns them away from the screening examinations".

The increase of participation in organized screenings for cancer is included in the ten-year strategy to fight cancer, to be recalled.
Nevertheless, the Institute addresses the risks of screening, writing that in "10% to 20% of cases, some tumors will not progress or only slightly, but today it is not possible to differentiate them from those that will aggravate" and that repeated exposure to X-rays is likely to lead to a very small number of so-called "radiation-induced" cancers.

In 2016, following the citizen and scientific consultation on breast cancer screening, several organizations,  notably the independent medical journal Prescrire and the Cancer Rose collective, called for more objective information to be provided to women  (see release of 04/10/2016 at 12:44).
INCa had updated their communication and in 2017 published an information booklet entitled "Breast cancer screening: get informed and decide" and then put online a website dedicated to screening. These two sources of information can be accessed at the very bottom of INCa's new Fake News page.

Reacting in a press release to the Inca Fake news page on breast cancer screening, the Cancer Rose collective judges that "refusing to debate, reducing any contradiction to the rank of fake news is unworthy of scientists and scandalous from an institution in charge of informing about cancer ». The collective asks for the withdrawal of this page from the INCa website.

When contacted by APMnews, Bruno Toussaint, editorial director of the independent medical journal Prescrire, said that the information provided on the INCa's Fake news page is "not balanced".
He deplored that the reference to the Inca booklet with the indication :”To answer the questions that women have about this screening and to enable them to decide, with full knowledge of facts, whether or not to participate in organized breast cancer screening" appears at the very bottom of the new Fake news page.

He recalled that, while screening was useful to many women, it was unnecessary and harmful to others.  An observational study based on an American registry established in 2015 that the treatment of ductal cancers in situ, which represents about 20% of breast cancers detected by mammography, does not reduce mortality from breast cancer, which had led a spokesman for the American Cancer Society to recognize that the treatment of these ductal cancers in situ is "excessive", to be recalled (see release of 21/08/2015 at 11:31).

In 2019, the journal Prescrire published a "Fact Sheet on Breast Cancer Screening " summarizing what is known about the benefit-risk balance of organized breast cancer screening". In women aged 50 to 69 years with no increased risk of breast cancer, the benefit of systematic cancer screening is uncertain," the Journal stated in introduction.
It highlighted that out of 1,000  women aged 50 to 70 years participating in mammography screening every two years for 20 years, there are 1,000 abnormal results resulting in 150 to 200 breast biopsies and the diagnosis of 75 cancers.

 Among these 1,000 women, at most 6 avoid death from breast cancer, a few have less severe treatment than if they had not been screened, but 19 are diagnosed and exposed to the undesirable effects of the treatments without benefiting from them because their cancer would never have progressed and 15 women have a cancer not detected by screening.

Virginie Bagouet-apmnews
APM International

Read our press release

Read article in Humanité Dimanche

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

Cover up that controversy, which one can’t endure to see

BREAST CANCER / « Cover up that controversy, which one can't endure to see »*

*the title alludes to the literary expression of famous Molière, « Cover up that bosom, which I can't endure to look on », showing the religious hypocrisy of Tartuffe.

L'Humanité Dimanche of July 8 to 21 courageously denounces, in a piece entitled « COVER UP THAT CONTROVERSY, WHICH ONE CAN'T ENDURE TO SEE” , the witch-hunt initiated by the National Cancer Institute to hide from the population the existing controversy on breast cancer screening.

Find the facts here:

https://cancer-rose.fr/en/2021/06/24/press-release-cancer-rose/ which led this institute to build the idea of a "CSA of health" in order to "eliminate" a worldwide scientific debate, and especially the existence of divergent studies freely qualified as "fake-news". This is integrated in the "roadmap" of the INCa for the ten-year strategy of the future cancer plan.

The article in HUMANITE-DIMANCHE reminds us that this institute, bound to neutrality, has still not responded to citizens' expectations formulated in the 2016 report on screening consultation, in which we can read, on page 133, the request for a halt to this screening as it is currently carried out, and at least the provision, for women, of information also concerning the damage of this screening, instead of the current very optimistic presentation.

Women must be able, on the basis of good information, to accept or refuse screening, without feeling guilty.

The author of this article, Ms. Anne-Corinne Zimmer, rightly reminds us that "it took the mobilization of the magazine Prescrire, Que choisir organization,  the Cancer rose collective, etc., to push the INCa to introduce few phrases of information on the benefits-risks balance ».

In 2021, therefore 4 years later, the National Cancer Institute, whose role is to inform the public, has still not published a real neutral information tool for women on the benefit-risk balance of screening, it conceals over-treatment and still minimizes the number one problem of screening, which is not radiation-induced cancer, that INCa puts forward as a shield on its "enlightenment" site, but it is the over-diagnosis, which according to modern studies, could well concern one cancer out of two detected.

As the writer of the article very bravely concludes:
“Wanting to silence all controversy can only lead to more and more distrust among the population.”

The article, translated

Author: Anne-Corinne Zimmer

L'HUMANITE DIMANCHE, 8 to 21 July 2021

BREAST CANCER / « Cover up that controversy, which one can't endure to see »*

*the title alludes to the literary expression of famous Molière, « Cover up that bosom, which I can't endure to look on », showing the religious hypocrisy of Tartuffe.

Organized screening remains at the heart of the strategy to fight breast cancer for the next decade. The National Cancer Institute (INCa), the dedicated french governmental agency and committed to neutrality, has set up a website to fight against everything it considers as "fake news" on the subject.  At the risk of ignoring  plural information on a procedure that has been debated for 20 years.
Silencing the scientific controversy that has existed since the 2000s on the issue of organized breast cancer screening by mammography, is on the roadmap of the National Cancer Institute's (INCA) strategy for the next ten years (1).

Indeed, this is not stated in this way, but it is well mentioned in the national strategy for the fight against cancer 2021-2031: action 1.2 refers to "the set up of a reactive system to combat fake news".   This system is already effective with the launch of the website “Enlightenments” (2) in early June 2021, on which one will search in vain for studies diverging from the Institute's position in favor of organized breast cancer screening alone. Yet the controversy has existed for decades around the world.

The INCa further adds in its roadmap : "A reactive anti-fake news system will be structured (...). It is important to better inform public opinion, especially by using data that makes tangible the effects of prevention (international benchmarks, results of studies...). In addition, without being limited to the field of cancer, the creation of a "CSA Health"**type system will be studied, to implement rules for information in health, provided in a framework agreement with content hosts (media, social networks) to do a work of eliminating fake news identified by a college of experts."

**CSA is the French acronym of “Conseil Supérieur de l'Audiovisuel », which is the French regulator of audiovisual.

FAKE OR DIVERGENT STUDIES?

"A priori it seems to be a good idea," recalls Jean Doubovetzky, doctor and member of the collective Cancer rose, non profit organization for the information of women on the organized screening of breast cancer, except that "to appoint a college of experts who would have the power to decree that an information given in any field of health is a fake news, and to impose to the media and to the social networks its elimination, in other words its censorship" it is at least a strange idea. Therefore, how can one keep a critical thinking, if research and studies diverging from INCa's opinion are not presented?

FORGOTTEN RECOMMENDATIONS

And the precedents do not plead in favor of the INCa. At the end of the 2016 citizen consultation, which included a panel of scientists and a panel of citizens (see below), both recommended stopping organized screening and, as a second option, recommending that organized screening be stopped as currently practiced and to be completely reviewed - supported in particular by clear information for women on the benefits and risks balance. In the final report of consultation (3), the first recommendation is " to take into consideration the controversy in the information provided to women and in the information and training (initial and continuous) of professionals ", as well as " decision support tools to empower women to make their choice, i.e. to accept or refuse the invitation to participate in organized screening ".

11,000 TO 12,000 DEATHS PER YEAR

The citizens' panel of the orientation committee to improve breast cancer screening www. concertation-depristage.fr gathered in 2016 recalled that "(they) do not wish(wished) to keep the policy of organized screening as it is currently defined and applied” _, because it should be "accompanied by clear and neutral comprehensive information to understand the benefit-risk balance of participation and information tools for decision-making”. For the conference of professionals (researchers and physicians), they expected "a decrease in mortality from this cancer-which in France, from the 1960s to nowadays, is around 11,000 to 12,000 deaths annually”.

Organized screening abandoned in Switzerland

The INCa responded: "Abandoning screening on the pretext that its tools are perfectible would be  (...) a nonsense", while ignoring the proposals.  Two years later, information on the benefit-risk ratio was still not included in the letter of invitation to organized screening received by women over 50 years of age.

It took the mobilization of independent medical journal "Prescrire", “Que choisir” organization, Cancer rose collective and of the doctor and columnist Dominique Dupagne (Atoute.org) to push the INCa to introduce few phrases of information, three years later ... and only about the risks of "radiation-induced cancer", which is just one of the aspects on the benefits-risks balance. When Switzerland, for example, abandoned the extension of the organized screening on the basis of a public consultation.

The decision aid guides and other tools for forming the judgment of population are ignored by this health agency. People should not only rely on INCa, on its hunt for "fake news" and its references to its own studies, but should make the effort to visit the WHO dedicated website (https://www.euro.who.int) or the Cancer rose website (cancer-rose.fr/ ), which provides information and brochures distributed with the invitation to the organized screening in countries other than France. Refusing a scientific and human debate, which is necessarily controversial, would not be a substitute for a prevention policy, since the arguments are on both sides.

Wanting to silence all controversy can only lead to more and more distrust among the population.

ANNE-CORINNE ZIMMER

(1) The implementation of organized breast cancer screening in France began in 2004.

(2) https://leseclairages.e-cancer.fr/le-depistage-du-cancer-du-sein-est-il-inutile-voire-nefaste/

(3) Report of the steering committee, citizen and scientific consultation (September 2016), p. 127. Available at www.concertation-depistage.fr

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

INCA : from bad surprises to bad surprises

By Dr M.Gourmelon, June 22, 2021

INCa France: French Cancer Institute

Act 1

The citizen consultation of 2015 raised the question of breast cancer screening in France.This high-quality work resulted in a 166-page report [1] [2].
The recommendations of the steering committee were unambiguous (p133 of this document):

Translation:

« The committee proposes two scenarios for making breast cancer screening strategy to evolve and for achieving the same objective: enabling the implementation, in the coming years and with validated technological tools, of a screening strategy adapted to the level of risk. To reach this objective, the committee has made the above recommendations and proposes two ways to achieve this through one or the other of these scenarios :

  • Scenario 1: Termination of the organized screening program, the relevance of a mammogram being assessed in the context of an individualized medical relationship.
  • Scenario 2: Discontinuation of organized screening as it exists today and implementation of a new organized screening, profoundly modified.

Despite the clarity of the recommendation, Professor IFRAH scandalized the French medical community by denying these findings:

"The letter from the President of INCa, which is attached to the report and is supposed to summarize the report for the Minister, is edifying. Norbert Ifrah violently denigrates the first scenario. He states that "by the very admission of the report's authors"... it would be "very risky, generating inequities and loss of chance". These words are not found in the report! According to the president of INCa, "abandoning the screening program" would be "a nonsense"[3].

Act 2

Publication of the "Information booklet on organized breast cancer screening", updated in August 2017[4].
But also " Guidelines for general practitioners " " Breast cancer, from diagnosis to follow-up " (March2016). [5]

This booklet obtains a score of 6/20 when it comes to the quality of the information it provides[6].
The guidelines for general practitioners are also of "poor quality."[7]

It should be noted that these two documents, which were supposed to contain objective information on breast cancer screening by mammography, are still in effect today, June 2021, on the INCA website.

Since 2016 and March 2017, the INCA has not made the slightest revision to its documents.
Yet the INCA as a governmental health agency has a duty to provide non-partisan information.
Nevertheless, the INCA cannot ignore the strong criticisms that are addressed to it.

Thus in April 2018, in the face of the "deafness" of the INCA to these criticisms, an independent collective associating organizations ( Cancer-Rose, Que Choisir, Le Formindep, the Princeps group) and a doctor blogger editorialist on France Inter Dr. Dominique DUPAGNE, published a press release entitled "INCa provides women with incomplete and biased information on the advantages and disadvantages of following the organized breast cancer screening. "[8]

Act 3

On June 16, 2021, INCa launches "the info behind the fake-news". [9]

This is relayed by the press. [10]
Professor IFRAH, still president of INCa, presents "INCa's new heading to fight against fake news" in these terms:

"Infox, fake news or even rumors, whatever name we give them, this false information can have dramatic consequences when it concerns the health of our fellow citizens.

Unfortunately, the area of cancer does not escape it. Faced with the multiplication of these fake news, the National Cancer Institute has created this webpage to help you find out why they are false and to better understand their dangers.

Pr Norbert Ifrah, president of the National Cancer Institute. "

The press release states [11]:


"Protecting the health of our fellow citizens in the face of the development of fake news in the field of cancer"

"If some of them, unfortunately well anchored, can be characterized as "far-fetched", as for example the wearing of the bra supposed to cause breast cancer, others represent a real danger for the patients who base their hopes of cure on them. "

"This device is part of the actions of Axis 1 "Improving prevention" of the ten-year strategy to fight cancer 2021-2030, launched on February 4 by the President of the Republic. "

"Each topic proposed in this section is based on a previously identified fake new. Its deciphering follows a path that enables us to apprehend its origin, to understand why it is classified as false information and its dangerousness for each of us. "

"From June 16, the National Cancer Institute is running a campaign on digital and social networks. Its objective: to allow everyone to access the decoding of false information in the field of cancer.  This campaign, which will run until mid-December 2021.... "

Who could not agree with the fight against false information? Nobody.

Unfortunately, in this section, from the very beginning, next to the famous "Far-fetched Infox" of cancer caused by wearing a bra, INCa presents the question of the interest of breast cancer screening by mammography as being an Fake new, for which it wants to demonstrate the danger[12].

We are not going to detail and analyze this page here. We will come back to it in a dedicated article.

No, what is shocking is that the INCa attributes the qualifier "Fake new" to the scientific debates that for years have been analyzing the relevance of breast cancer screening by mammography, its benefit/risk balance.

"This scientific debate may negatively impact women and turn them away from the screening exam. "

Under the pretext of "protecting the health of citizens," INCa "insults" all international scientists, the media that relay them, and all those who participate in the debate.
Moreover, as we detail in our website [13], studies that question the benefit of screening are currently more numerous than those that manage to demonstrate its usefulness.

For many years now, INCa has been "blind and deaf" [14] to everything that is scientific, to independence, to the ethics of information [15], to the exhaustiveness of information and the need to provide women with independent and reliable information in order to make an informed decision about whether or not to undergo screening.

Today, INCa is taking its "indignity" one step further.

Conclusion

This new step taken by INCa is particularly shocking for all those for whom the scientific method is not an empty word.

Scientific debate does not accept the denigration by one "camp" of those who have a contrary opinion.

The "truth" in science and medicine is enriched by debate, not by insults.

INCa believes it has the "truth" on the subject of breast cancer screening by mammography. This does not give it the right to behave as it has done for years, disregarding the debate and now resorting to unworthy denigration.

We don't know what the future will bring, but we are very concerned because today the red line, which has been crossed for many years as mentioned at the beginning of this article, has been largely left behind by INCa.

References

[1] http://www.concertation-depistage.fr/

[2] http://www.concertation-depistage.fr/wp-content/uploads/2016/10/depistage-cancer-sein-rapport-concertation-sept-2016.pdf

[3] https://formindep.fr/cancer-du-sein-la-concertation-confisquee/

[4] https://www.e-cancer.fr/Expertises-et-publications/Catalogue-des-publications/Livret-d-information-sur-le-depistage-organise-du-cancer-du-sein

[5] https://www.e-cancer.fr/content/download/164989/2115178/file/Cancer-du-sein-Du-diagnostic-au-suivi-20161129.pdf

[6] https://cancer-rose.fr/2018/02/11/10552/

[7] https://30ansplustard.wordpress.com/2017/01/04/comment-linca-prend-les-mg-pour-des-cons/

[8] https://drive.google.com/file/d/1mxRrPz7VE-SifeQ-lha6lYjuQyAUbfWL/view

[9] https://leseclairages.e-cancer.fr/

[10] https://destinationsante.com/cancers-linca-part-en-guerre-contre-les-fake-news.html

https://fr.news.yahoo.com/cancers-l-inca-part-guerre-103158638.html

https://www.sudouest.fr/sante/cancers-l-inca-part-en-guerre-contre-les-fake-news-3788939.php

[11] https://www.e-cancer.fr/Presse/Dossiers-et-communiques-de-presse/Les-eclairages-de-e-cancer.fr.-L-info-derriere-l-infox-la-nouvelle-rubrique-de-l-Institut-national-du-cancer-pour-lutter-contre-les-infox

[12]  https://leseclairages.e-cancer.fr/le-depistage-du-cancer-du-sein-est-il-inutile-voire-nefaste/

[13] https://cancer-rose.fr/en/category/informations-en/studies/

[14] https://pratiques.fr/Aveugles-et-Sourds

[15]

 

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

A Guide to Health and Medicine from the GIJN

5 June 2021

Cécile Bour MD

Re-Check

ReCheck is an independent investigative media specializing in the backstage  of health affairs and issues.

It was founded by two investigative journalists, Catherine Riva and Serena Tinari.

Catherine Riva, a Swiss investigative journalist, is the author (among others) of the book "La piqûre de trop"  on the anti-HPV vaccination, published by Xena, and of the Mammograben files on the mammography screening business in Switzerland. Catherine Riva was also one of the reviewers of our information leaflet.

Serena Tinari is an Italian investigative journalist who has (among other things) worked for the media Patti Chiari, a weekly news magazine on citizens' and consumers' rights of the Italian Swiss public television RSI.

In the past, we have relayed one of their programs [1] on mammography screening with a guest speaker, Professor Michael Baum, surgeon and professor emeritus (University College London), who is an advocate of informing women about the benefit/risk balance of mammography screening and has published [2] and taken positions in this regard.[3] [4] 

In addition to a different and, above all an independent approach to information, Re-Check also offers training and conferences on the investigations conducted by these two journalists, as well as access to GlobaLeaks, an anonymous platform for whistleblowers to transmit confidential information in the field of medicine and public health.

Novelty of Re-Check

This year's novelty is the "A GIJN Guide. Investigating Health  and Medecine »  elaborated by Catherine Riva and Serena Tinari, for journalists covering health issues, in French version downloadable here.

GIJN is the acronym for the Global Investigative Journalism Network, a group of international journalists committed to the development and sharing of information and data among investigative journalists around the world, while promoting good journalism practices and open access to documents and data.

The guide

What is this guide and for what purpose? As explained on the homepage this guide addresses  the issues of « drug development and approval, evaluating scientific studies, understanding conflicts of interest, and exposing fraud and malpractice. It’s a road map for going beyond the claims of corporate press releases and government officials ».

Clearly, it is about unraveling the claims of medical "experts" and opinion leaders, and allowing journalists to decipher scientific studies. According to the two authors' presentation, the creation of this guide appears to have been motivated by the difficulties encountered by journalists during the Covid pandemic, and their disarray in front of medical information that was developing at an unsustainable rate. The preface is specifically dedicated to this issue.

The guide consists of a preface, an introduction, five main chapters (Regulating drugs : Dévelopment and Approval, A study is not just a study. Get your numbers straightThe Scientific Basis of Influence, First do not harm. Reporting about safetyTips and traps, Hypes and Ethics) and appendices.

A study is not just a study. Get your numbers straight

This chapter, number 2, caught our attention because it is in line with the concerns of Cancer Rose.

EBM

It is reminded here that EBM, or evidence-based medicine, should be at the center of a journalistic investigation, applying the principle of critical reading (the process of carefully and systematically evaluating the results of scientific research on the basis of evidence, to judge its reliability, value and relevance).

Evidence-based practice should lead the investigator to assess the relevance of certain elements according to the PICO method (P = check whether the patient's characteristics are suitable for the research being conducted; I = the treatment or test, e.g., screening; C = the comparator, which may be a placebo or another treatment or test; O = outcome, i.e., the measurement element or judgment criterion used in the study, which may be a rate of mortality, a rate of survival, a rate of serious illness, a therapeutic improvement, etc.)

It is interesting and even essential to be aware of this prerequisite in order to avoid analyses of studies as one can sometimes read in certain magazines or newspapers beginning with : "a large study concludes that...", or "Professor X, an expert in the treatment of disease Y, believes that..."

Levels of evidence

This chapter also reminds us that not all mediated studies are equal, and present a remarkable diagram illustrating the hierarchy of studies according to the level of evidence, which is very useful for assessing the validity of a study.

Part of the chapter explains the temptation to confuse correlation with causality, a mistake very often made, not only by journalists but sometimes by doctors and scientists themselves. It is not because two events are concomitant that they are necessarily related by cause and effect.

Presentation of data

Good advice is given concerning the use of absolute values, rather than percentages, to judge the benefit-risk balance of a treatment or test.

In the area of breast cancer screening, which is our topic, there is a need to report the reduction in the risk of dying from breast cancer, in absolute values, rather than in relative values. We often underline this point and the French citizen consultation on breast cancer screening requested it in several parts of its report (e.g. page 79),

The mathematician Gerd Gigerenzer's demonstration presented by the authors in this second chapter of the guide is a good and very masterful example of how a percentage can be misleading. When women are told that breast cancer screening will reduce mortality by 20%, they understand that 20 out of every 100 women screened will die of breast cancer. This is not the case. Gigerenzer writes « Did the public know that this impressive number corresponds to a reduction from about five to four in every 1,000 women, that is, 0.1%? The answer is, no. »
(But this misrepresentation still persists in official brochures and documents from official websites. [5] [6]  )

A concrete example of misleading communication in the field of breast cancer screening

The Grouvid study

In November 2020, the Grouvid study was published and mediatized. It was done by modeling a scenario in the context of the Gustave Roussy Institute, to evaluate the consequences of delays in oncology care for patients due to the Covid pandemic. We reported on this here, as well as on a meta-analysis published in the BMJ that also points in this same direction.

The Grouvid study, like the BMJ study cited, suggested that the delays in patient care linked to the first wave of Covid-19, could be responsible for an excess of cancer mortality of 2 to 5%, 5 years after the start of medical care. According to the study, these delays in medical care are due to 2 factors:

- the reluctance of patients to seek care for fear of contamination
- and a reduction in the capacity of hospitals to provide care.

Nowhere in this study was screening discussed, not breast cancer screening or any other screening.

However, the media made the confusion and abundantly relayed that delays in screening were the cause of excess mortality in oncology, and in particular for breast cancer [7] .  This was false information.

Conclusion

Investigating the healthcare industry can be really complex and difficult as a journalist.
Covering a health field, whatever it may be, certainly requires devoting a lot of time to it, training, acquiring specialized scientific notions, such as basic knowledge of epidemiology and statistics, and reading a lot of specialized literature, as well as mastering the scientific jargon.

The urgency in communication, the pressure of editorial offices on positive communication in the field of breast cancer screening, the self-censorship of some journalists lead to disasters in the information of populations, to their detriment.

We have seen the approximation and the misunderstanding in the medical information during the Covid-19 pandemic, due to the journalistic subject itself, certainly complex, but also aggravated by the urgency of the situation and the haste of the media to publish.

The tools proposed by the Global Investigative Journalism Network's Guide to Investigating Health can only be a salutary asset for any journalist concerned with good health information, in order to avoid the confusion of the population in the face of an influx of information and counter-information, as we experienced during the pandemic, and to avoid exposing people to promising procedures or tests that will plunge them, through ignorance of the potential dangers, or through bad media coverage, into the hell of a disease.

It is a question of ethics, journalistic this time.

References

[1]https://cancer-rose.fr/2019/04/29/emission-tele-sur-lenjeu-du-depistage-par-la-revue-dinformation-italophone-patti-chiari/

[2]https://www.bmj.com/content/346/bmj.f385
Harms from breast cancer screening outweigh benefits if death caused by treatment is included
BMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f385 (Published 23 January 2013)Cite this as: BMJ 2013;346:f385

[3] https://cancer-rose.fr/2019/03/25/lettre-de-michael-baum-the-times/

[4]https://cancer-rose.fr/en/2020/11/30/international-reactions-to-attempts-to-cover-up-screening-failure-in-a-publication/

[5]https://cancersdusein.e-cancer.fr/infos/pourquoi-les-autorites-de-sante-recommandent-de-realiser-un-depistage/

[6] In this regard, read our article: methods of influencing the public to participate in screening

Reduction of breast cancer mortality only expressed as relative risk reduction by the French national screening agency in the 2019 information brochure, this represents a method of influence used by the authorities to increase participation in screening. The authors point out that the use of these types of influence remains ethically dubious in cancer screening programs where the benefit-harm ratio is complex and scientifically contested.

[7] Non-exhaustive list of all the media that relayed this information to the public in a misleading manner:

https://www.francetvinfo.fr/sante/cancer/covid-19-les-retards-de-depistage-du-cancer-de-sein-vont-entrainer-une-augmentation-de-la-mortalite-entre-1-et-5-dans-les-dix-ans-qui-viennent-selon-la-fondation-arc_4124525.html#xtref=https://mobile.francetvinf

https://www.sudouest.fr/2020/10/24/cancer-du-sein-axel-kahn-lance-un-cri-d-alarme-pour-inciter-au-depistage-8000781-4696.php

https://fr.news.yahoo.com/octobre-rose-axel-kahn-implore-085353145.html

https://www.europe1.fr/societe/debut-doctobre-rose-axel-kahn-alerte-sur-les-retards-de-diagnostic-des-cancers-du-sein-3995432

https://www.topsante.com/medecine/cancers/cancer/covid-19-depistage-cancer-639344

https://www.la-croix.com/Sciences-et-ethique/Deprogrammation-doperations-Linquietude-immense-malades-cancer-2020-10-27-1201121508

http://www.francesoir.fr/opinions-tribunes/chronique-covid-ndeg34-le-geneticien-axel-kahn-president-de-la-ligue-contre-le

https://www.lemonde.fr/planete/article/2020/10/26/cancers-infarctus-avc-ces-pathologies-victimes-indirectes-du-covid-19_6057437_3244.html

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

French consultation is discussed in JAMA

October 30, 2017

Viewpoint: https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2659560

Less Is More

Reform of the National Screening Mammography Program in France

Alexandra Barratt, MBBS, MPH, PhD Sydney School of Public Health, University of Sydney and Wiser Healthcare, Sydney Australia.
Karsten Juhl Jørgensen, MD
The Nordic Cochrane Centre, Rigshospitalet Department 7811, Blegdamsvej 9, DK-2100, Copenhagen, Denmark.
Philippe Autier, MD, International Prevention Research Institute, Lyon, France.
(Mr. Pr. P.Autier entrusted us with the French translation of the article reporting on the French citizen consultation.)

The authors summarize the conduct of the citizen inquiry

In October 2016 the French Minister of Health released the report of the independent consultation into mammography screening.
The report presented two options: ending the national breast cancer screening program, or ending the current program and implementing a radically reformed program. (1)

In 2004, after years of ad hoc screening, a national mammography screening program was introduced.
Every two years, women aged 50-74 receive invitations by mail for mammography screening, covered by health insurance. Over time, however, doubts have emerged about the program's reach, accessibility, effectiveness and potential adverse effects of overdiagnosis and overtreatment.

Why and how the French inquiry took place?

In September 2015, the Minister of Health announced what the French know as a "citizen and scientific inquiry," and appointed an independent steering committee to oversee it.

This committee brings together leading health professionals, (in oncology, general medicine, epidemiology, public health) and social science professionals (in anthropology, law, economics, history of science, and bioethics), all without financial or academic links to breast cancer screening.

In addition to reviewing evidence reviews on specific issues (provided by a technical committee of the French National Cancer Institute (Inca)), the committee also oversees a "civil dialogue," a concept inherited from the French Revolution of 1789.

A website provides information about the consultation and invites the public to submit their opinions. Two pillar consultations were set up: a citizen consultation of a group of 27 women from different regions of France and different socio-economic groups, and a parallel consultation of a group of 19 health professionals with relevant professional experience but no connection to breast cancer screening. Each of these consultations took place over 5 days of information, presentations, expert interviews, questions and discussions. Each focus group addressed four questions and developed a collective response to each. A final public meeting was held to present the recommendations and answer questions.

The steering committee considered the scientific controversy over mammography screening to be particularly intense, focusing on the uncertainty of its benefit and concerned with the issues of overdiagnosis and overtreatment. The national screening program had never been controversial, despite extensive discussion in the scientific literature.

The committee found that the evidence on breast cancer screening outcomes was limited, coming from old trials and studies, none of which had been conducted in France.
The committee members pointed out that knowledge of the natural history of breast cancer was incomplete, and that breast cancer screening therefore infringed a fundamental principle of screening (2), namely that the natural history of the disease from latent to declared disease should be adequately understood. In addition, the committee was critical of the information promoted during Pink October, or breast cancer awareness month, which the committee felt overstated the benefit of screening. The citizens concluded that they did not want to keep the breast cancer screening program as currently defined and implemented. They spoke of the difficulty of making recommendations without regular evaluation of the program, and the importance of measuring the impact of the program on quality of life (not just mortality). They noted the need for economic responsibility when a program is publicly funded. The health professionals consulted recommended continuing the program, but with major reforms including improvements in the quality of information, accessibility, and evaluation of the program.

The steering committee recommended that the program be discontinued, or that radical reforms be made.


If the program were to be continued, their key recommendations included:

  • - Providing neutral, comprehensive information for women, the public and physicians.
  •  - Acknowledgement of scientific controversy in information for women and physicians.
  •  - Training for doctors to better assist women in making an informed decision about breast cancer screening.
  •  - A research program into the natural history of breast cancer(s) and the effectiveness of new treatment approaches.
  • -An improved program evaluation to monitor the impact of screening on quality of life, mortality, and cost impact.
  • - An end to screening of women age 50 years or younger who are ar average risk
  • - Consideration of screening based on risk level, so that low-risk women could be screened less frequently or not at all, while higher-risk women could be followed more intensively.

The Minister of Health asked the French National Cancer Institute to develop a plan for reform.


April 2017 the Minister of Health published a plan composed of broad reforms intended to be implemented over several years (3).

The first immediate steps are focused on information for women so that they can make their own decisions with the help of their physician: a new medical consultation for every woman at age 50 to discuss cancer screening and prevention options (including primary prevention through lifestyle changes to reduce the risk of cancer); provision of comprehensive information in the form of a booklet accompanying screening invitations and also via an online decision aid; and additional tools and training to help physicians communicate about the benefit/risk balance and limitations of screening.

Other measures include improving access to the program, providing more support to women during the screening process, improving the technical quality of the program, and establishing a research program alongside the screening.

But the authors of the point of view in the JAMA underline that the plan does not detail how these measures will be evaluated.

What is the specificity of the French consultation?

The authors recall that this French consultation is the third independent evaluation of breast cancer screening in Europe, following those of Switzerland and the United Kingdom (4,5). All emphasized the need for comprehensive and balanced information, and all recognized overdiagnosis as a serious harm; two (the Swiss and French evaluations) made a recommendation to stop screening as currently proposed.
These results differ greatly from the recommendations of other panels, such as the US Task Force, the American Cancer Society, and the International Agency for Research on Cancer, which recently concluded that the benefits outweigh the harms of breast cancer screening and continue to recommend it. (6)

Where might these differences between different program reviews and recommendations come from?

The authors give several explanations :

1- Avoiding conflicts of interests

One explanation is that some panels may be compromised by conflicts of interest (7), something carefully avoided in the three European surveys.

2- A broader range of represented disciplines

It is also important that views from a broader range of disciplines be represented, so that panel members with expertise in the humanities and social sciences will be more likely to raise social, legal, and ethical considerations for discussion regarding population screening.

Juries making recommendations for medical treatment do not necessarily look for the values and preferences of citizens in making their recommendations. But screening programs do impact the lives of asymptomatic citizens, and so their choices are important in decision-making.

3- Inclusion of a citizen perspective

That the French consultation included a citizen perspective in its investigation and recommendation process is another possible explanation.

One approach to mammographic screening is to ask individuals to make their own informed decision to participate, with assistance in the form of shared decision making.
This approach, although often advocated (8), is challenging to obtain and sustain.(9)

Seeking the views of informed citizens and their preferences through a collective approach is an alternative that provides a sharp contrast to shared decision-making with one patient at a time.

In Conclusion

The authors share the view that community discussions, such as in the French inquiry, allow for the sharing of meaningful information and the exchange of opinions among citizens from diverse backgrounds. This kind of deliberative process offers advantages for developing actions with implications for other countries, well beyond breast cancer screening.(9,10) 

References :

1. Comité d’orientation de la concertation citoyenne et scientifique sur le dépistage du cancer du sein. Rapport du Comité d’Orientation. Boulogne-Billancourt, France: Institut National du Cancer; 2016. http://www.concertation-depistage .fr/. Accessed September 14, 2017.

2. WilsonJMG,JungnerG.PrinciplesandPracticeof Screening for Disease. Geneva, Switzerland: World Health Organization; 1968.

3. Plan d’action pour la rénovation du dépistage organisé du cancer du sein: Ministère des Affaires Sociales et de la Santé; 2017.

4. MarmotMG,AltmanDG,CameronDA,Dewar JA, Thompson SG, Wilcox M. The benefits and harms of breast cancer screening: an independent review. Br J Cancer. 2013;108(11):2205-2240. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3693450/

5. Chiolero A, Rodondi N. Lessons from the Swiss Medical Board recommendation against mammography screening programs. JAMA Intern Med. 2014;174(10):1541-1542.

6. Jørgensen KJ, Kalager M, Barratt A, et al. Overview of guidelines on breast screening: Why recommendations differ and what to do about it. Breast. 2017;31:261-269.

7. NorrisSL,BurdaBU,HolmerHK,etal.Author's specialty ans conflicts of interest contribute to conflicting guidelines for screening mammography. J Clin Epidemiol. 2012;65(7):725-733.

8. ElmoreJG,KramerBS.Breastcancerscreening: towardinformeddecisions.JAMA.2014;311(13): 1298-1299.

9. IrwigL,GlasziouP.Informedconsentfor screening by community sampling. Eff Clin Pract. 2000;3(1):47-50.

10. RychetnikL,CarterSM,AbelsonJ,etal. Enhancing citizen engagement in cancer screening through deliberative democracy. J Natl Cancer Inst. 2013;105(6):380-386.

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

Inequalities of screening during Covid-19, interview with V.Prasad

June 3, 2021 synthesis by Dr. C.Bour

Video and interview with V.Prasad, American hematologist-oncologist and health researcher, associate professor at the University of California, San Francisco

An article has just been published in JAMA Network Open entitled "Socioeconomic and Racial Inequities in Breast Cancer Screening during the COVID-19 Pandemic in Washington State."

The authors note the disruption of so-called preventive care, a disruption that has been highlighted by several international studies in Europe and the United States, with a decrease in the uptake of mammography screening.

Inequalities

Yet, while all people suffered from COVID-19, say the authors, it hit harder in some places and disrupted routine care differently.

The authors report the number of women who had mammograms in 2018, 2019 and 2020. And it seems that during COVID-19, there were half as many mammograms as the previous year, namely a reduction of 49%, so almost by half.

This reduction was more likely to affect individuals by racial and socioeconomic status.

Specifically, among Hispanic women there was a greater reduction in mammography usage during COVID-19.

Then, explains Vinay Prasad in the video, Americans Indian were affected, then Asians, then black populations, and finally white populations. Whites had the smallest change in their use of mammographic tests compared to 2019.

Rural areas also experienced a greater decline in mammography screening.

Finally, the authors also looked at insurance status. Those who were forced to pay by themselves for care had a greater decline in screening use, logically enough.

What does it all mean?

The study, according to Prasad, essentially and interestingly shows that cancer prevention service use declined significantly during the pandemic, but that it did not decline equally for everyone.

People are much more likely to decrease their use of so-called preventive care if they are Hispanic, if they pay for it themselves, and if they live in rural areas, he said.

According to V. Prasad, it will be a lot more difficult to disambiguate the effect of mammography screening from the effect of all the other socioeconomic variables that exist and come into play here.

Clearly, it will be very difficult to see any effect of effectiveness or ineffectiveness of screening because of the socio-economic biases that pollute the analysis.

There is evidence that health care is disrupted, and more so along socio-economic and racial dimensions, but, says V. Prasad, once this is noted, it does not mean that women who do not get their mammograms are suffering disproportionately.

Already in May 2020, Gil Welch and V.PRasad wrote an article (CNN opinion) titled "The Unexpected Side Effect of COVID-19," which we discussed on Cancer Rose, and they prophesied this dramatic reduction in routine care that would allow to examine its impact.

Decreasing this routine care would allow, among other things, to examine the effect on overdiagnosis and boldly ask the question: would reducing these preventive tests maybe be better? Is this a bad thing or a good thing?

Conclusion

The Covid-19 pandemic was swift and frightening, and it forces us to rethink what is most important in public health, and obliges us to examine what is valuable and what is not.

Shouldn't we focus on the problems of unequal access to care, depending on geographical area or socio-professional category, and put priority public health problems into perspective?

We must simply think, not always about the 'damage' of not using screening, but rather about the potential bonus of 'non-damage' , thanks precisely to the avoidance of many tests whose effectiveness and relevance are not always proven.

In this context, we should mention a study that is currently underway to evaluate overdiagnosis through the "natural experiment" of reduced screening during the pandemic.

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

Quaternary prevention

May 22, 2021,

Cécile Bour, MD

A point of view in The Guardian

A researcher, Dr Ranjana Srivastava, Australian oncologist and author (book "A better death"), shares in The Guardian her personal experience at the end of her training and the questions she had regarding the systematic tests offered to patients, and which imply the responsibility of the doctors, although they are not always aware of it.

As the author explains in her testimony, every test is supposed to have a clinical rationale, and poses (or it should pose) an ethical dilemma for the prescriber.

This point of view of the author was motivated by the death of a woman (in Melbourne, Victoria, April 2021) following a coronary CT angiogram. This examination, performed routinely, was offered by the company where the woman worked and was not justified by any clinical indication. The examination was complicated by the occurrence of anaphylactic shock after the injection of the contrast medium. 

This case appears to be unthinkable and, according to Dr. Srivastava, provides a major lesson to us, health professionals, but also to patients, who are increasingly anxious, carcinophobic and seeking routine examinations.

We are living in a society where people want to feel good and have access to simple ways of preventing disease and its consequences. The public is misled by media messages that are very often enthusiastic and lacking in discernment, and that praise routine screening to "be safe". Pink October is the emblematic example.

The author of the article warns of a very real risk: with the profusion of medical tests marketed as "convenient" and also for many "non-invasive", it is tempting for the public to consider them as an alternative to well-proven, but more difficult to follow recommendations, such as eating with moderation, exercising and working on bad hygienic and dietary habits. 

Actually, it is somewhat the same kind of concern that one encounters for the promoted but very controversial screening of lung cancer by low-dose CT scans, and the french Academy of Medicine has raised the argument that a good primary prevention campaign is certainly more relevant.

It is difficult for the public to understand how anything labeled "medical" can be harmful to health, yet there is ample evidence that unnecessary testing can cause harm.

The scientist cites the example of South Korea, which has introduced a national screening program for certain cancers, including thyroid cancer. Thyroid cancer diagnoses have increased 15-fold in 20 years, while mortality has remained stable, according to a study in the New England Journal of Medicine

Indeed, one third of adults are believed to have tiny papillary thyroid cancers that remain asymptomatic throughout life. But almost the entire population of South Korea that has been diagnosed with thyroid cancer through screening has undergone major surgery or radioactive iodine treatment, each with potentially serious complications. 

This is why it is important for doctors and patients to understand the benefits and risks of a screening test before recommending it.

In another example, oncology researchers have just reported their disappointment with the results of a three-decade study on ovarian cancer[1] [2] [3] involving more than 200,000 women, which found that screening for ovarian cancer via a blood test and ultrasound provided early detection but no survival benefit.
Ovarian cancer is almost always diagnosed at a late stage and associated with poor survival.
The researchers explained educationally that diagnosing ovarian cancer at an early stage does not change when patients die, because the cancer is inherently more aggressive.[4] 
However, they point to many recent advances in cancer treatment, including symptom management, targeted therapies, and the hope of using knowledge about evolution of the disease, to create better screening tests in  future, and to conduct further studies. 

Dr. Srivastava emphasizes the professionalism of these researchers and oncologists, which neither feeds the hype nor extinguishes hope. This is what every physician should seek.

Patients have a legitimate right to expect information, says the scientist.

One organization, Choosing Wisely Australia, has come up with a list of five questions that every patient should keep in mind before deciding to accept a routine test: Do I need this test? What are the risks? Is there an alternative? What is the cost (financial, emotional or time cost)? What happens if I do nothing? 

It's that last question, the option of doing nothing, that so few patients ask, says Dr. Srivastava, because they have tremendous faith in their doctor's knowledge and ability to do the "best" thing.

We need to learn the lesson of moderation and never let a patient suffer through an unnecessary test.

From overdiagnosis to overtreatment

The reason why we are alerting patients to the lack of information about overdiagnosis in breast cancer, which is blatantly absent from the official documents given to women invited to breast cancer screening[5] [6], is that this overdiagnosis has a materialization, a perceptible concretization for the patients in their body. And that is overtreatment.

This concerns surgical procedures, mastectomies, which have been constantly increasing since the introduction of screening, contrary to the "therapeutic reduction" promised to women. But this is not all.

Radiotherapy treatments are also on the rise, and a recent article in the French magazine Que Choisir warns about the poorly evaluated side effects of radiotherapy.

The nature and quantification of the side effects of these treatments is difficult to know, the article says, because no authority lists the side effects of ionizing radiation in a systematic way.

Professor Jean-Luc Perrot, dermatologist at the University Hospital of Saint-Etienne, raises the problem of evaluating the relevance of a treatment when we do not know all of the undesirable effects that this treatment generates. This question emerges in the face of the observation of skin cancers, obviously radiation-induced, in people who have been irradiated for other cancers.

According to this practitioner, a centre recording the effects, even late, of radiotherapy would be indispensable, but the proposal for a dedicated observatory, relayed by the ISRN (Institute for Radiation Protection and Nuclear Safety) more than 10 years ago, has never been followed up.

The assertion of "less heavy" treatments promised to women thanks to screening, as presented on the official INCa website (french national cancer institute), appears all the more cynical as overdiagnosis is barely explained. Over-treatment, although mentioned in the title of the paragraph, is nowhere explained on the site[7]. And to suffer the heavy consequences of a possibly useless radiotherapy is intolerable.

In this context, it is impossible not to mention the thorny issue of carcinoma in situ, a particular entity of breast cancer, largely over-detected by screening and treated by radiotherapy. Their treatment and the treatment of their recurrence do not reduce the number of deaths due to invasive breast carcinoma.

The question is not to propose a "light" treatment whose lightness is relative, or a more "targeted" radiotherapy. The question is rather to not propose a treatment at all to women  who are going to be treated because of an unnecessary detection of cancer that would never have affected them in the absence of screening.

Quaternary prevention

This point of view brings us to quaternary prevention.

This term has recently changed its meaning; initially used for all palliative care of a patient who has exceeded the curative stage, it now designates all actions carried out to prevent patients and more generally populations from over-medicalization, avoiding invasive medical interventions by favouring ethically and medically acceptable procedures and care.

The central precept is primum non nocere.

The means are narrative-based medicine and evidence-based medicine (EBM).

    - Narrative-based medicine

This is listening to the patient and involves adapting the "medically possible" to the person's needs and demands.

    - Evidence-based medicine

EBM is based on a tripod:

1) external experience, which basically refers to scientific studies

2) Internal experience: what we learn from our professional practice

3) patients' preferences and values.

This notion of quaternary prevention will undoubtedly be at the center of public health concerns in the future, because over-medicalization, which is costly both in terms of health care and human lives, also raises the question of the financial costs absorbed by this unnecessary medicine, which creates needs and encumbers the field of "prevention".

On this subject, it is worth reading the article co-authored by several doctors in 2011 which makes quaternary prevention one of the essential tasks of the doctor: Quaternary prevention, a task of the general practitioner

In 2020, an article[8] was published proposing recommendations to limit and stop unnecessary routine examinations in primary care, which we have previously covered.
https://cancer-rose.fr/en/2021/01/20/scaling-back-in-health-care-more-shared-decision-making-and-thoughtful-consideration-of-recommendations/

In conclusion

It is essential that all health professionals become aware of the importance of quaternary prevention, i.e. the protection of populations from deleterious overmedicalization.

At the same time , public health education is also needed, but unfortunately there is a lack of official and media support. It is necessary to make people understand that it is in the interest of patients to conceive medicine within a relevant approach to care, without abuse, and above all towards a de-escalation of irrelevant routine care.

References

[1] https://www.news-medical.net/news/20210517/Early-detection-of-ovarian-cancer-does-not-translate-into-saving-lives.aspx

[2] https://www.lapresse.ca/actualites/sante/2021-05-18/depistage-du-cancer-de-l-ovaire-deception.php#

[3] https://www.theage.com.au/national/desperately-disappointing-setback-for-ovarian-cancer-screening-hopes-20210512-p57reg.html?btis

[4] We have now learned that cancer does not develop in a linear manner, but that there are a multitude of possibilities, with slow, even nonprogressive cancers, while others may evolve quite fast, and are intrinsically immediately aggressive, due to their molecular characteristics. Read here: https://cancer-rose.fr/en/2020/11/30/how-does-a-cancer-develop/

[5] https://cancer-rose.fr/en/2021/01/01/critical-analysis-of-the-new-inca-information-booklet/

[6] https://cancer-rose.fr/2018/02/11/10552/

[7] https://cancersdusein.e-cancer.fr/questions/surdiagnostic-surtraitement-quest-ce-que-cest/

[8] https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2770724

Read more : The dark side of early detection

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

Screening propaganda

Marc Gourmelon, MD, November, 1st, 2020

"1 lie repeated 1000 times becomes the truth”.

This is one of the well-known principles of propaganda. (1)

It has been well studied in political field and more particularly in dictatorships. The sentence in the title is historically attributed to Joseph Goebbels, who headed the Ministry of People' s Education and Propaganda under the Nazi regime.

But propaganda is not a prerogative of totalitarian regimes, whether of the right or the left. As Noam Chomsky writes, "Propaganda is for democracies what violence is for dictatorships. "Propaganda is a concept designating a set of persuasion techniques, implemented to propagate with all available means, an idea, an opinion, an ideology or a doctrine and to stimulate the adoption of behaviors within a target public. These techniques are exercised on a population in order to influence it, even to indoctrinate it. " (2)

Clearly, the insistence on promoting breast cancer screening by mammography is propaganda. Indeed, there is an intention to "propagate a doctrine" according to which screening saves lives and this is in total contradiction with what independent scientific studies tell us.

The goal: "adoption of behaviors within a target audience", in this case, to perform a screening mammogram within the women target population. It is noteworthy that the desire to promote breast cancer screening by mammography has been a steady feature over the past 20 years, and has been accentuated with the adoption of the organized screening program in 2004, following the 2003 cancer plan. (3)

However, as early as 2015, following the consultation of French citizens on the topic, organized screening should have been stopped in France. However, this was not the case because conclusions of this consultation were "confiscated" to allow the continuation of this screening. (4)

All means are good to promote it. The Pink October campaigns that come back year after year are proof of this. All means are good to promote it.

But the propaganda goes farther.

PUBLIC AGENCIES

The latest report of the IGAS-General Inspection of Social Affairs, an independent organization, recommends "encouraging the use of screening, regardless of the methods used". (5)

OPINION LEADERS AND MEDIA

But also, any "open mic", any offer to speak in the media, be it radio or television or the written press, allows many doctors to spread the propaganda for screening.

We recently heard Professor Axel KAHN, a medical expert and president of the Ligue contre le cancer (League against cancer), sounding the alarm on France Info radio channel, in favor of this screening (6).

Many techniques of propaganda are therefore found in this " call " (2)

- fear

- call to authority

- false statement: "Covid-19 is much less serious than cancer”

- “Media influence: radio, television, press, advertising, internet " is also present because this call is relayed by : the newspaper Sud Ouest (7), Yahoo actualité (8), Europe 1 (9) Top Santé (10) La Croix (11) France Soir (12), and this a non-exhaustive list.

Here, the COVID19 crisis, although far from being related to the problem of breast cancer, is used to promote screening. In a similar way, we read in an article in Le Monde on 26 October 2020 (13) the following comments:

"The figures are also worrying when it comes to screening, which has stopped for twelve weeks. The number of mammograms within the framework of organized breast cancer screening for 50 to 74 year olds has totally collapsed. On the Ile de France and Hauts¬ de France regions alone, their number went from about 14,000 and 9,000 respectively from mid-March to early May 2019 to zero during the lockdown, according to the French Society of Radiology."

This collapse of screening, which worries Prof. Axel Kahn so much, allows a national daily newspaper of large edition to affirm once again a lie: there is nothing to worry about if a screening which has not shown its benefit, is not carried out anymore.

MEDICAL ACTORS

It should be noted that many of doctors promoting screening have very strong ties of interest with it.

The French Society of Radiology finds it disturbing that the number of screening mammograms has totally collapsed. But is the health of women their concern? Or are there other, non-medical concerns that are preoccupying this learned society? (14)

CONCLUSION

We should not let ourselves be "blinded" by propaganda. We must remain lucid and recognize in these repetitions, carried by media more concerned by " buzz " than by a critical work, a propaganda effect, again and again.

Will this propaganda and disinformation ever stop? One can doubt it considering the last news. (5)

Yet the well-being and health of women are at stake.

Références

(1) https://nospensees.fr/mensonge-repete-mille-se-transforme-t-verite/

(2) https://fr.wikipedia.org/wiki/Propagande#Techniques_de_propagande

(3) https://cancer-rose.fr/2020/10/19/histoire-du-depistage-mammographique/

(4) https://formindep.fr/cancer-du-sein-la-concertation-confisquee/

(5) https://cancer-rose.fr/2020/10/21/ligas-recommande-le-maintien-de-la-promotion-du-depistage-du-cancer-du-sein-par-mammographie-en-lintensifiant/

(6) https://www.francetvinfo.fr/sante/maladie/coronavirus/video-octobre-rose-axel-kahn-implore-les-femmes-de-se-faire-depister-le-covid-19-est-beaucoup-moins-grave-que-le-cancer-du-sein_4154331.html

(7) https://www.sudouest.fr/2020/10/24/cancer-du-sein-axel-kahn-lance-un-cri-d-alarme-pour-inciter-au-depistage-8000781-4696.php

(8) https://fr.news.yahoo.com/octobre-rose-axel-kahn-implore-085353145.html?

(9) https://www.europe1.fr/societe/debut-doctobre-rose-axel-kahn-alerte-sur-les-retards-de-diagnostic-des-cancers-du-sein-3995432

(10) https://www.topsante.com/medecine/cancers/cancer/covid-19-depistage-cancer-639344

(11) https://www.la-croix.com/Sciences-et-ethique/Deprogrammation-doperations-Linquietude-immense-malades-cancer-2020-10-27-1201121508

(12) http://www.francesoir.fr/opinions-tribunes/chronique-covid-ndeg34-le-geneticien-axel-kahn-president-de-la-ligue-contre-le

(13) https://www.lemonde.fr/planete/article/2020/10/26/cancers-infarctus-avc-ces-pathologies-victimes-indirectes-du-covid-19_6057437_3244.html

(14) https://www.cairn.info/revue-les-tribunes-de-la-sante1-2016-3-page-21.htm#

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

The anguish of pink advocates in the face of declining participation in screening

October 6, 2020

Cécile Bour, MD

https://www.lequotidiendumedecin.fr/specialites/cancerologie/face-une-baisse-du-depistage-du-cancer-du-sein-linca-lance-une-campagne-loccasion-doctobre-rose

and

https://mobile.francetvinfo.fr/sante/cancer/covid-19-les-retards-de-depistage-du-cancer-de-sein-vont-entrainer-une-augmentation-de-la-mortalite-entre-1-et-5-dans-les-dix-ans-qui-viennent-selon-la-fondation-arc_4124525.html#xtref=https://mobile.francetvinf

The anxiety-provoking communication of Pink October tries to surf on the wave of concern that the epidemic has caused among oncologists, and now tries to emphasize screening. The world of pink is worried, women who have long been manipulated[1], shamelessly incited[2] all of a sudden seem to be less enthusiastic about running and even less about running for screening.

"We need to encourage everyone to continue with screening campaigns", assures Mr. Pr. Eric Solary, president of the scientific council of the ARC foundation for cancer research. "Models indicate that the increase in breast cancer mortality will be between 1 and 5% in the next ten years."

"Faced with a decline in breast cancer screening, INCa is launching a campaign on the occasion of Pink October," proclaims the Quotidien du Médecin.

What's going on? Is the pink house burning?

Analysis

Let's analyze calmly the ever feverish messages of our institutes and health authorities, anxious, tormented, frightened and in a perpetual trance that women may turn away from their precious pink toy.

1. Assuming that there is indeed an excess of cancer deaths linked to COVID, in the years to come, it is obvious that the cause will not only be the lesser adherence to routine breast cancer screening but above all a delay in therapeutic management (by cancelling non-urgent interventions, by fear of patients being contaminated by going to the hospital or in doctors' waiting rooms), as Mr Solary admits in the article.

2. The main argument in opposition to the view of Mr. Solary is that the same model announces an increase of 2 to 5% in cancer mortality, this announced increase will concern all cancers, not only breast cancer [3].

This is the Grouvid study:

"Delays in diagnosis and treatment of cancers, linked to the first wave of coronavirus, could result in an excess of cancer mortality of 2 to 5%, five years after the start of management, according to a French study made public on Friday, September 18. These are the delays and postponements of patients' visits that have the most consequences, shows the research presented by statistician Aurélie Bardet of the Gustave-Roussy Institute in Villejuif (Val-de-Marne)."

"These delays could result in a "minimum 2% increase in cancer deaths" five years after diagnosis. This excess mortality would mainly affect liver, sarcoma and head and neck cancers. This research is based on a mathematical model that allowed an assessment of the effects of the Covid-19 pandemic on the organization of cancer care and the consequences on prognosis, taking into account the lags related to lockdown." (Grouvid study)

https://mobile.francetvinfo.fr/sante/maladie/coronavirus/coronavirus-une-surmortalite-par-cancers-de-2-a-5-liee-a-la-premiere-vague-de-l-epidemie-de-covid-19-selon-une-etude_4110821.html

Mr. Solary maintains that "The models indicate". But here we are, as far as screening and the Pink October campaign are concerned, we are mostly in communication and very little in science.

Which models, with which data in input?

"The models indicate", it ends up sounding like Kaa's song from the Jungle Book: " trust me, believe me...".

And that is difficult, because after all the misinformation of women we become doubtful to be able to trust blindly anyone...

Références

[1]https://cancer-rose.fr/en/2020/12/17/manipulation-of-information/

[2] https://cortecs.org/2016/05/

[3] https://mobile.francetvinfo.fr/sante/maladie/coronavirus/coronavirus-une-surmortalite-par-cancers-de-2-a-5-liee-a-la-premiere-vague-de-l-epidemie-de-covid-19-selon-une-etude_4110821.html

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.


Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.