Medical research: the crucial role of philanthropy

In France, 18% of foundations are dedicated to medical and health research, and these issues account for 47% of all foundations’ expenditures. These figures are a testimony to the growing role of philanthropy in the prevention and treatment of diseases, as well as the discovery of innovative, therapeutic methods.

“Starting at the end of the 19^th century, private non-profit organizations were set up by members of civil society, patients or their families, to fund medical research,” explains Nicolas Truffinet, a historian who specializes in the link between philanthropy and medical research. “Since then, certain organizations have become emblematic, such as Institut Pasteur, inaugurated in 1888 primarily to develop vaccination against rabies, and which then expanded its research into infectious diseases.”

In 1947, the French Association for the Development of Medical Research was created, which subsequently became the Foundation for Medical Research (Fondation pour la recherche médicale) in 1962. The end of the 1960s saw the creation of Fondation de France, established in 1969 and instigated by André Malraux and General Charles de Gaulle. Medical research would become one of its major causes. In fact, one of its first donor-advised funds was Fondation Antoine Béclère, which is dedicated to research on medical imaging and telemedicine. Today, over 130 of Fondation de France’s donor-advised funds were originally created to support medical research.   

Between 1980 and 2000, the number of foundations dedicated to medical research doubled. This trend “was encouraged by the government, thanks to several important laws that made the legal and fiscal framework for philanthropy more attractive,” notes Arthur Gautier, professor and executive director of the Philanthropy Chair at ESSEC Business School.

Demonstrate innovation and agility

“Right now, most of my funding comes from philanthropy, except when it has to do with subjects that have a direct impact on health,” explains Lluis Quintana-Murci, biologist, geneticist and professor at the Collège de France and Institut Pasteur. “Yet fundamental research is the basis for all clinical and applied research. In my laboratory, for example, we are working on a unique, innovative project in French Polynesia, for which I have not managed to obtain the least bit of financing.”

Dr. Nathalie Sénécal, head of the Health and Medical Research department at Fondation de France, explains: “We help researchers in a wide variety of ways, from supporting research projects, to awarding international researcher mobility grants, to publishing studies, to producing documentaries, to organizing symposiums…we offer flexible support that can be adapted according to need. In this way, we allow researchers to test their hypotheses. We assume the risk in supporting highly innovative work that, if successful, will then find public outlets.”

This philanthropic approach, which embraces risk-taking and agility, proved to be valuable during the Covid-19 epidemic. For example, the procedure for submitting proposals was streamlined for faster action, and synergies between philanthropic actors came to light. “Faced with the enormous needs during the Covid-19 crisis, in March 2020 we decided to join forces with Assistance Publique–Hôpitaux de Paris (Paris public hospital system) and Institut Pasteur, each one bringing its expertise and strengths to the collective for maximum efficiency and impact,” explains Dr. Nathalie Sénécal. A total of 8.4 million euros were raised to fund medical research projects, such as COVIDOM, a telemedicine solution that allows doctors to attend to patients with mild forms of Covid-19 and take the load off health workers, and also preserve medical resources for the most severe forms of the illness.

The long term and collaborative methods

If it’s important to be able to rapidly adapt to make progress on urgent issues, medical research also requires time. Research on the impact of the environment on health can mean following patient groups for years. For example, Fondation Guy Demarle – Enfance et Bien Manger (Guy Demarle Foundation – Childhood and Eating Right) awarded Marie-Aline Charles, epidemiologist and director of research at INSERM (French National Institute of Health and Medical Research), for coordinating the Elfe study. During the crucial first thousand days of life, the child is exposed to environmental and nutritional influences that will have an impact on their health and development for the rest of their existence. The goal of the study is to observe the effects of nutrition, health and social and physical environment on French children’s health and wellbeing. It also aims to predict illnesses that they might contract as adults, such as cancer or diabetes, the overarching purpose being to adapt environments and nutrition. To do this Marie-Aline Charles is following 18,000 children born in France in 2011 until they are 20 years old.

Initiating new methods, new ways of doing things, and new ways of cooperating also requires time. When Fondation de France launched its autism program at the end of the 1990s, French research and patient care was lagging substantially behind the work of many other countries. Research findings were the subject of passionate debate and the specialists, who came from various disciplines and worked only among themselves. Thanks to a multidisciplinary committee, the Autism program encouraged knowledge sharing and set up collaborative projects. By bringing together psychiatrists, neurologists, pediatricians, geneticists and epidemiologists, by fostering exchange between clinicians and researchers, it was possible to make real progress. “Fondation de France did something extraordinary: research on autism. And it was this momentum that made it possible to make important discoveries,” notes Thomas Bourgeron, a researcher who specializes in autism at Institut Pasteur, and supported by Fondation de France.

Getting involved in less eye-catching causes

Cancer and cardiovascular illnesses are among the causes most strongly supported through philanthropy. For example, 39% of cancer research comes from private donations. Yet the philanthropic sector also devotes itself to less explored subjects, those that are less visible and even taboo—and often lack funding.

Among those subjects is research on psychiatric illness, which represent a major public health issue. Fondation Bettencourt Schueller, for example, supports Fondation FondaMental, which offers training that encourages doctors to view psychiatry as vast field of innovation and aims to train the future stars of French psychiatric research. A field that Fondation de France has been involved in for years to promote early diagnosis and improvement in patient care.

Fondation de France has chosen to devote its Cancer program to resistance to treatment, an issue in one third of all cancer cases.

Promising results that attest to the quality of philanthropic support  

According to Nicolas Truffinet, today’s foundations are “well-identified actors, on whom researchers know they can count on every year].” In September 2020, Institut Gustave Roussy was elected the 5^th best hospital for oncology in the world by the American magazine Newsweek. International recognition linked to research made possible by the eponymous foundation.

Every year, Fondation de France and its donor-advised funds award some twenty prizes  to researchers for their innovative and promising work. In 2020, for example, it gave the Prix de l’Oeil (The Eye Prize) to researcher Isabelle Perrault, geneticist at the Institut Imagine, for her work that led to the genes that cause Leber Congenital Amaurosis, a rare disease that provokes blindness in children, and for which there is no treatment. She also drew attention to the possible development of the illness, which in certain cases can affect other organs. Thanks to these discoveries, customized care can be offered to young patients.

Laureate of the European Research Council, winner of bronze and silver medals from the CNRS (French National Center for Scientific Research), as well as various prizes from the French Academy of Sciences, Lluis Quintana-Murci praises the role of philanthropy in his prestigious career path. “For 22 years the Institut Pasteur has trusted me on subjects that seemed off the wall at first because few people were working on the way the evolution of the genome influences immunity. And the same goes for Fondation de France, FRM, Fondation Allianz-Institut de France and National Geographic Society, who, regarding my past work, gave me completely free rein. Now that was modern and audacious!”