THE HEALTH CONTEXT OF 2020 HAS NOT KEPT US FROM CONTINUING OUR MOBILIZATION ACTIONS TO ACCELERATE RESEARCH, IN ORDER TO RESPOND TO OUR PRIORITY: ACCELERATE RESEARCH TO CURE ALL CHILDREN WITH CANCER. FACE-TO-FACE, OR IN VIRTUAL MODE, PATRICIA BLANC, OUR FOUNDING PRESIDENT, WHO IS PART OF SEVERAL FRENCH AND EUROPEAN WORKING GROUPS, HAS MOBILIZED AT FRENCH AND EUROPEAN LEVELS.
Discover below the details of our actions, in France and in Europe, which have notably contributed:
– in France, with the launch with the National Cancer Institute and three associative groups, of a consortium of eleven French research teams selected to work on the causes and origins of pediatric cancers (3.6 million euros allocated by the French Ministry of Research). Following the funding in 2019 of a large call for projects on data sharing in onco-pediatrics, this unprecedented consortium (never carried out by the INCA before) aims at strengthening the understanding of pediatric cancers and therefore better treat them.
– in Europe, after 5 years of mobilization with SIOPE and CCI-Europe associations, the European Commission finally announced at the end of November 2020 the modification of the regulations on pediatric medicinal products. Several of our requests, aimed at accelerating the development of pediatric drugs by laboratories, have been taken into account in the planned changes. Also, the specificities of pediatric cancers are taken into account in the new strategy of pharmaceutical companies published in November 2020.
IN FRANCE
OPPORTUNITIES AND OUR ACTIONS:
– In February we organized the 7th edition of our FAST colloquium at the Palais du Luxembourg, in order to bring together the major players in pediatric oncology research in France: doctors, researchers, institutions, parliamentarians, drug manufacturers, Foundations, associations and families were present to participate in the discussions. The day’s program was rich: presentation of research advances, testimonials, and discussions around several major issues identified so that research can move faster. Read the summary of the conference.
– Following the obtaining of an additional budget of 5 million eurosby the French Ministry of Research at the end of 2018 for basic research in pediatric oncology, we offer each year, with the GRAVIR collective and two other associative collectives, relevant and high-impact research axes to which allocate funds, thus justifying this national effort and demonstrating the usefulness of renewing it each year. Member of the Task Force coordinated by the National Cancer Institute, we participated in the 7 meetings of 2020 and thus, enabled the development of the following calls for projects and actions:
- Setup of a consortium on the causes and origins of childhood cancer. Eleven research teams have been selected to work together and propose research programs on this theme, which is particularly important for families. Allocated budget of € 3.6m
- Support riskier research projects, but with high potential for discoveries, so that innovative solutions can be found (“High Risk High Gain”projects). Allocated budget of € 1m
- Promote the sharing of information on pediatric cancers by setting up a comprehensive website for families and doctors
- Create synergies between countries by organizing an international conference focused on scientific research in 2021
- Foster the exchange of medical knowledge between researchers by facilitating the mobility of young researchers internationally
– Throughout the year we have continued to raise French parliamentarians’ awarenessabout the cause of childhood cancer, with the GRAVIR collective, through the “Gold September” movement and its golden ribbon, but also through MP Michel Lauzzana, president of the Cancer group at the French Parliament, and MP Véronique Trillet-Lenoir, rapporteur for the European cancer plan. Our actions have shown results since Patricia Blanc was able to present to numerous French MPs, during September, the situation of research on pediatric cancers, as well as the demands of the GRAVIR Collective, so that they can act on their own scale, to help the cause.
– Finally, we have made proposals for the new ten-year cancer strategy in Francewhich will be published at the end of December 2020/ January 2021.
EN EUROPE
OUR OBJECTIVE: that childhood cancer is not forgotten in European research strategies. More specifically, obtaining specific measures and a budget dedicated to children and teenagers in the European cancer plan, the Cancer Mission on research and innovation and in the new European strategy for pharmaceutical companies.
OPPORTUNITIES AND OUR ACTIONS:
– The new European Cancer Planand the report of the Cancer Mission, of which Patricia Blanc was elected member by the European Commission, will be announced in early 2021. Their strategies and recommendations were discussed throughout 2020 and we participated in the working meetings to ensure that the specificities of childhood cancer are taken into account in the measures to be decided (in particular: better understanding the origin of pediatric cancers, accelerating access to innovative treatments, organizing effective long-term monitoring, take into account the psychological and financial consequences for the family). With the associations of Childhood Cancer International – CCI Europe – we have published to this end and widely distributed a Position Paperto parliamentarians. If we are heard, this will make it possible to focus European actions and investments, but also, in turn, French investments.
– The European Commission has launched a major public consultation mid-2020 on the pharmaceutical strategy. We responded to it in order to draw the Commission’s attention to the need and urgency to respond to the specificities and issues of pediatric cancer. We have been heard. The report, published by the European Commission on November 28th, recognizes that the needs of pediatric cancers are taken into account in laboratory strategy and proposesinitiatives aimed at boosting innovation and developing new treatments.
– The European Commission announced at the end of November 2020, the modification of the European regulation on pediatric medicinesand rare diseases. We have been asking for it since 2015! The changes proposed by the European Commission are in line with our requests:
- accelerate the development of pediatric drugs according to “unmet medical needs” (including pediatric cancers) and according to the needs of patients(and no longer on the development of drugs in adults)
- base pediatric development on the action of the drugand not on the disease (which is never a pediatric cancer) OR (e.g.: lung cancer does not exist in children but the drug in development in adults could also act on several childhood cancers = obligation to develop also in children)
– Review of incentives granted to laboratories for the marketing of pediatric drugs
– Pending this essential change in legislation, we have worked in parallel – and will continue to do so – directly with pharmaceutical laboratories, pediatric oncopediatricians and regulators (EMA and FDA), through the ACCELERATE platform, to prioritize molecules innovative in adults likely to be the most effective also in pediatrics (pediatric strategic forum).
ACCELERATE, of which our president, Patricia Blanc, is co-founder and member of the Executive Committee, is an unprecedented multi-stakeholder platform that brings together oncopediatricians, drug manufacturers, regulators and parent/patient organizations, with the aim of accelerating access to new treatments for children and teenagers with cancer. Created in 2015, it brings together European, but also American, Canadian and Australian players.
THUS, THE YEAR 2020 WAS ONE OF INTENSE MOBILIZATION WORK, FEDERING TOGETHER, PARENT AND PATIENT ASSOCIATIONS, PARLIAMENTARIANS, INDUSTRIALS AND DOCTORS. THE ALREADY VERY PROMISING ANNOUNCEMENTS IN EUROPE SHOW US THE IMPORTANCE OF PERSEVERING IN OUR ACTIONS ; AND WE ALSO HOPE THAT THIS WILL HAVE A SIGNIFICANT IMPACT IN FRANCE’S TEN-YEAR CANCER STRATEGY, AND THE EUROPEAN CANCER STRATEGY WHOSE REPORTS ARE EXPECTED EARLY 2021. GO, FIGHT, WIN !
