Preventing Overdiagnosis Conference 2022-Calgary

Click on the image to access Preventing Overdiagnosis website

We are invited to Preventing Overdiagnosis Conference in Calgary (9 - 12 June) as speakers for the theme: Promotional messaging vs neutral messaging – impact on individual breast screening decisions when information is suppressed.

Keynote speakers: https://www.preventingoverdiagnosis.net/?page_id=2354

Presentation from Jean Doubovetzky MD, Under The Radar

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Presentation from Cécile Bour MD, Censorship In France

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June 2021

The National Cancer Institute censures and qualifies  as "fake news" information in health that does not follow the official direction line.

In May 2020, about thirty French editorial societies denounced "with the greatest firmness" the section entitled "Fake news Coronavirus" launched by the Government (1).

The French journalists argued that "the State is not the arbiter of information".
This site was removed, a few days later.
The lesson has obviously not been learned.

Thus, today in the same logic, the National Cancer Institute (2) has decided to study the creation of a "CSA of Health" (CSA is the acronym of “Conseil Supérieur de l'Audiovisuel », French regulator of audiovisuel)  in order to "establish rules in the field of health information”.

This “CSA of Health device will not be limited to the field of cancer”, and will therefore concern all health blogs, all doctor bloggers on social networks (websites, twitter, facebook) and all health articles in the media (online press). This decision is foreseen in a framework agreement with the hosts of content (media, social networks) to do a "work of elimination of the fake news identified by a college of experts."

The device to fight against "fake news" is already in place, part of the actions started in 2021. INCa is leading this action as indicated in the roadmap of the Cancer Plan decennial strategy 2021-2030 (Action file I.2., Action I.2.3, page 10, "Setting up a system to combat against fake news") (3).

Actualisation 2022

Project of an High Audiovisual Council of Health confirmed and published in the "Decennial Strategy to Fight Cancer 2021-2030", page 43

Thus, in order to implement this action immediately, the French National Cancer Institute qualifies from the start as "Fake news" the international controversy that exists on the benefits-risks balance of breast cancer screening.
This can be found on the INCa website under the tab : "Enlightenment: the information behind fake news" which also presents the graphic charter of  the French Republic (4).

The National Cancer Institute has always disseminated partisan and promotional information on breast cancer screening, emphasizing the effectiveness of screening by minimizing overdiagnosis and its serious consequences (overtreatment).

By decreeing that "the information on scientific debate can have a negative influence on women ...", INCa follows the same logic as the State in the affair of the site site "Désinfox Coronavirus": to arrogate a role of censor in the media production, and to grant a conformity to the only media which will deliver the information selected by the "experts" of the Institute.

By qualifying as “fake news” any scientific contradiction, by designating as "fake news" information that does not go in the official direction, by having "experts" do "an elimination work" of all that it considers contrary to its own communication, INCa will simply exercise censorship, in a country where freedom of expression and freedom of press are fundamental.

[1]https://www.lemonde.fr/actualite-medias/article/2020/05/05/le-gouvernement-supprime-sa-page-controversee-desinfox-coronavirus_6038753_3236.html

[2]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

[3] https://www.e-cancer.fr/Institut-national-du-cancer/Strategie-de-lutte-contre-les-cancers-en-France/La-strategie-decennale-de-lutte-contre-les-cancers-2021-2030/Le-lancement-de-la-strategie

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

[5] https://cancer-rose.fr/en/2021/03/08/ou-en-sommes-nous/

Read more :

https://mypebs-en-question.fr/actus/infox_en.php

https://mypebs-en-question.fr/actus/censure_en.php

https://mypebs-en-question.fr/actus/infox_fond_en.php

https://mypebs-en-question.fr/actus/inca_conflit_interet_en.php

June 22, 2021

Website page "Enlightening information behind the fake news » set up by INCa - An unacceptable rubric on breast cancer screening

Website page in english

The French National Cancer Institute (INCa) has always adopted a partisan presentation of the benefits-risks balance on breast cancer screening, emphasizing the effectiveness of screening, although subject to contestation at international level, and minimizing risks of screening, despite of citizen consultation demands in 2016.

Currently, Professor IFRAH, the president of INCa, who is supposed to promote fair information, without bias, enabling women to make their informed decision, launches "the new rubric of INCa to fight against fake news ".

On the page regarding breast cancer screening,  questioning the benefits/risks balance of breast cancer screening is qualified as being "fake news". 

It is stated: "This scientific debate may have a negative impact on women and turn them away from screening", implying that a scientific debate could be similar to fake news.

Then, an assertion is made without discussion and without nuance of the pretended proven benefit of this screening, on the basis of "proofs" quoted in references which are... a report, a leaflet and a brochure all issued by this Institute. No source of independent scientific study is mentioned.

To deny the worldwide contestation around this screening, to refuse the debate, to downgrade any contradiction to the rank of fake news is unworthy of scientists and scandalous from an Institution in charge of informing about cancer.

Will the next step be the censoring of publications that contest or make unfavorable comments on screening, relayed in the media?

We request that this article on breast cancer screening to be removed from the National Cancer Institute's page website « Enlightening information behind fake news », because it is outrageous, insulting to the media, to scientists and to women who are fighting for an informed choice and no manipulation regarding breast cancer screening.

Cancer Rose, 31 March 2021

Cancer Rose launches new bilingual media library

Cancer Rose launches a new media library for general public and professionals who want to learn more about breast cancer and its screening, as well as about our activities on information and education. You will find it integrated in the menu, among the other categories of the website Cancer Rose.

The new design of our bilingual media library provides improved navigation to help our visitors find information easily.  Visitors can conveniently browse content, read and download all open-access documents, and view videos.

For general public, the media library offers posters, brochures, information videos, as well as an excerpt from Dr. Bernard Duperray's book "Dépistage du cancer du sein - la grande illusion".

For professionals, the media library offers the courses of Dr. Bernard Duperray, lecturer at the Faculty of Medicine Paris Descartes, within the inter-university diploma of breast pathology, as well as a library of clinical cases.

In addition, the media library provides access to Cancer Rose press releases and articles, as well as to presentations given at various events and conferences in France and abroad, since the Association was founded.

Links to Cancer Rose's social networks and the possibility of sharing any content you wish on your favourite social network are present at all times when you browse the media library.

Enjoy your visit on https://cancer-rose.fr/en/media-library/ !

Cancer Rose collective

Cancer Rose is a Non-Profit Organization under French law made up of independent Medical Doctors, a Doctor in Toxicology and a patient representative, with the goal of providing fair, transparent and objective information for women on mass screening for breast cancer, based on scientific evidence. Members of Cancer Rose have no sponsorships, honoraria, monetary support or conflict of interest from any commercial sources. They dedicate their time to this activity on a voluntary basis. The funds necessary for the functioning of this website and production of information materials (educational videos, brochures, posters) are generated by individual donations and members contributions.

We present the downloadable poster in two formats, A4 and A3, for distribution to your patients or for display in the waiting room, in three languages, french, english, arabic. 

You will find them on the French and English homepage.

French:

#Cancer du sein : téléchargez gratuitement notre affiche d'information (https://cancer-rose.fr)

English:

Breast #cancer : download our free information poster (https://cancer-rose.fr/en)

Arabic:

(https://cancer-rose.fr/en) سرطان الثدي: قم بتنزيل ملصق المعلومات المجاني الخاص بنا

What is the MyPEBS study?

https://cancer-rose.fr/my-pebs/wp-content/uploads/2019/12/MyPEBS-Protocol-.V1.2-du-27.07.18-.pdf

MyPeBS is a clinical trial which compares the incidence of advanced breast cancers in a group of women subjected to breast cancer risk-based screening tests and in a control group undergoing current standard planned screening tests.Stratified screening on risk factors is an interesting project in itself, and carrying out a clinical study can only be favorable in order to confirm whether it is or not.

This study, however, would have to be carried out with appropriate methodology, which appears not to be the case of MyPeBS.

1st point: the choice of using standard screening as a control arm is contestable.

Three options can be considered for future screening programs: changing to stratified screening tests, continuing current standard screening tests, or discontinuing all screening tests. Comparing the stratified screening arm to a current standard control arm could hopefully provide the answer to the question: is stratified screening more efficient or less efficient than standard screening? The answer to this question would only enable to make a choice between changing to a risk based strategy and continuing with the standard screening strategy. It will not provide any additional information to enable to make a choice between screening; stratified or standard, and no screening.
It is all the more regrettable that planned screening does not seem as adequate in 2018 as when it became the standard strategy. In terms of benefits, the 20% relevant mortality risk reduction is based on old studies and has not been found in recent studies. In terms of risks, overdiagnosis has possibly been underestimated, as recent studies have evaluated it nearer to 40% than to 10% as initially forecast. It should not be forgotten that overdiagnosis = unnecessary treatment, side effects - sometimes serious- with no benefits in return.
MyPeBS therefore represents a missed opportunity: the opportunity to provide the answer, with current data, to the question: should planned screening tests be discontinued, be continued or be changed to risk-based? To achieve this, including 3 arms in the study: one risk-based screening arm, one standard screening arm, and one with no screening would have been sufficient.
Of course this would mean accepting to reconsider the importance of screening if the study did not demonstrate superiority of screening compared to no screening. The sponsors of MyPeBS do not appear to be ready to call into the possible question.

2nd point: a lax approach as to non-inferiority.

The main objective of MyPeBS is to demonstrate non-inferiority of risk-based screening, as compared to standard screening. Contrary to what one might believe, A non-inferior to B does not mean that A is at least as performant as B. A non-inferior to B, means in effect that A can be inferior to B but that this inferiority does not exceed a certain threshold.`
In the case of MyPeBS, this threshold of non-inferiority is set, arbitrarily, to -25%. In other words, it is easy to think that at the end of the study, risk-based screening is certainly less performant than standard screening with, for example, performance loss somewhere between -5 and -20%; however, as the performance loss does not reach -25%, non-inferiority is confirmed, when in fact at best, the loss is of -5%, and at worst, this performance loss could reach -20%. Supposing your employer were to inform you that your salary scale was going to be revised downwards or upwards. Would you be truly reassured if your boss specified that in any case, if your salary were to decrease, this decrease would not be inferior to -25% ?And would you consider that a decrease of -25% of your income is insignificant? Well, this is exactly what MyPeBS puts forward. Simply replace “employer” by “study protocol” and “salary” by “screening efficiency”.

3rd point: deceitful information.

In the information leaflet, large-scale studies which showed that screening had reduced the mortality rate of breast cancer by around 20% are mentioned in the part of the text “Advantages and disadvantages of standard breast cancer screening”. Indication that those studies are old and probably obsolete or that a significant decrease of mortality by screening has not been found in recent studies [1,2] has been carefully omitted.
Concerning overdiagnosis, the leaflet merely mentions 10%, failing to specify that the frequency of overdiagnosis is not well known, with rates of up to 50% in some studies [3,4]. Furthermore, there is no mention of overtreatment that occurs with overdiagnosis. Nevertheless, they are indeed unnecessary treatments, with multiple side effects, which represent the major risks of screening tests.
Present scientific uncertainties make the presentation of benefits and harms of screening difficult. However, no information should be withheld, or for the purpose of clarity, should only convenient statistics be presented and others overlooked.
Studying the interest of stratified screening on risk factors might seem useful, but not haphazardly and certainly not with the main intention of promoting mammography screening one way or the other. This intention is clearly mentioned in Dr Balleyguer’s statement, page 14 in the press folder MyPeBS, 28 September 2018: "MyPeBS will probably encourage more women to enter national screening programs. Today, barely one out of two are taking part” [5 ].

READ MORE :
https://cancer-rose.fr/my-pebs/2019/08/02/mypebs-clinical-trial-failed-before-starting-2/

In response to these concerns

In response to these concerns, 4 European collectives, militating for independence in health, published an open letter, here is the English version:
https://cancer-rose.fr/my-pebs/wp-content/uploads/2020/02/LETTRE-COMMUNE-ANGLAIS.pdf

This letter was picked up by the press and mentioned in an article of the BMJ.

Press feedbacks

Article JIM
Article Quotidien du Médecin du 12 mars 2020 (french)
Article BMJ


Extract from article BMJ

The groups criticise the trial for assuming that breast screening is beneficial and for failing to compare stratified screening with a “no screening” group.
“MyPeBS represents a missed opportunity to provide the answer, with current data, to the question: should planned screening tests be continued, be changed to risk based screening, or stopped?” they wrote.
They also raise concerns about the trial’s “lax approach to non-inferiority” and point out that the two groups will be statistically compared with a threshold of “non-inferiority” arbitrarily set at 25%.
They go on to explain, “This comparison is obscure and conceals disconcerting information. According to the sponsors of MyPeBS, in the standard screening group, 480 new cases of severe tumours per 100 000 women are expected to be diagnosed. If the same rate does not exceed 600 per 100 000 women in the new personalised risk based group, both groups
will be declared equivalent. This means that if the rate of serious cancers is increased by less than 25% (for example 18% or 24%), then the study will be considered a success and the researchers conclude that the new screening methods are ‘as efficient’ as the former ones. In other words, +25% of serious cancers equals zero.”
Karsten Juhl Jørgensen, acting director of the Nordic Cochrane Centre and an author of the Cochrane review on breast screening, said that screening trial data were old, women below the screening age had experienced far greater reductions in breast cancer mortality than those invited, and new treatments have a far more important role than screening.
Jørgensen told The BMJ, “We desperately need a new trial of screening that can inform us about its role today. Whether personal screening strategies can optimise benefits and reduce harms is an important and relevant question. But screening trials need to be done extremely well to be informative, part of which means not relying on surrogate outcomes such as stage at detection, which we know can be misleading. The design of the new trial seems to raise more ethical questions than it answers.”

Ref.

1. Autier P., Boniol M., Koechlin A., Pizot C, Boniol M. (2017), Effectiveness of and overdiagnosis from mammography screening in the Netherlands: population based study. BMJ 2017;359:j5224 (https://www.bmj.com/content/359/bmj.j5224)
2. Møller M.H., Lousdal M.L., Kristiansen I.S., Støvring H. (2018), Effect of organized mammography screening on breast cancer mortality: A population-based cohort study in Norway. Int J Cancer. (https://europepmc.org/article/med/30144028
3. Junod B., Zahl P.-H., Kaplan R.M., Olsen J., Greenland S. (2011), An investigation of the apparent breast cancer epidemic in France: screening and incidence trends in birth cohorts. BMC Cancer. 2011 Sep 21,11(1):401.(https://bmccancer.biomedcentral.com/articles/10.1186/1471-2407-11-401)
4. Welch H.G., M.P.H., Prorok P.C., O’Malley A.J., Kramer B.S. (2016), Breast-Cancer Tumor Size, Overdiagnosis, and Mammography Screening Effectiveness. N Engl J Med 2016; 375:1438-1447. (https://www.nejm.org/doi/full/10.1056/NEJMoa1600249)
5. http://www.unicancer.fr/sites/default/files/MyPeBS-DP.pdf