With today’s data revolution, patients have more and more access to information compared to the past and are thus more and more getting to be involved in decision making concerning their own health. While this is seen as constraints for the healthcare system, others do believe in the right of each patients to take his/her own decision in hands regarding specific situations, not least when “approved” treatment alternatives have been all used.

When no other solution is available, except maybe for the so famous compassionate use of an unapproved medicine that is still in development, the difference between health authorities’ perspective and the patients’ perspective become clearer.

A patient facing death is more concerned about the cost of the delay rather than the efficacy or safety of the medicine under development (1). However, health authorities do not view this with the same eye as they do rather consider the cost of extending life from both clinical (side effects) and financial (the true cost of the medicine) perspectives.

In the US, in the late 1970s, patients obtained a federal right to buy unapproved new medicines from other countries as part of their right to privacy thus matching the autonomy principle as patients are free to decide about their own bodies and healthcare (2).

Soon after, drug prices are made communicable to patients by advertising (3). During the 1990s, some companies began to add a labelling for patients to their drugs.

With a different healthcare system, France has known similar transitions but in a more gradual way with delays compared to the US. Patients’ voice became powerful during the AIDS crisis of the 1990s (4). In 2002, patients gained further rights to decide upon his/her healthcare, still under physician’s responsibility including malpractice which will be put on physician’s shoulders (5). In 2005, with more than a decade of delay compared to the US, France allowed patients to refuse life support measures. Overall, patients in France seem to have less rights than in the US and this matter is still of ongoing debate.

Dr. Amir Sharaf, Medical Director

To know more on how we connect patient communities and advocacy groups to medical societies and industry partners in your country, contact us at:


1- Christina Sandefur, Safeguarding the Right to Try, 49 ARIZ. ST. L. J. 513, 536 (2017).

2- Schloendorff v. Soc’y of N.Y. Hosp., 105 N.E. 92, 93 (N.Y. 1914).

3- Reminder Labeling and Reminder Advertisements for Prescription Drugs, 40 Fed. Reg. 58,794 (Dec. 18, 1975).

4- Philippe Amiel, Les associations de patients et la recherche clinique académique et industrielle, 199 BULLETIN DE L’ACADEMIE NATIONALE DE MÉDECINE 589 (2015).

5- Loi 2002–303 du 4 mars 2002 relative aux droits des malades et à la qualité du système de santé, JOURNAL OFFICIEL DE LA RÉPUBLIQUE FRANÇAISE [J.O.] [OFFICIAL GAZETTE OF FRANCE], Mar. 5, 2002, p. 4118.

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