The event, with representatives of citizens and patients, European and national Institutions, the World Health Organisation, experts and practitioners in the field of ATMPs, has been held in Brussels in the afternoon.
Now in its 17th edition, the European Patients' Rights Day has been celebrated today with a conference at the European Parliament in Brussels, from 15:00 to 17:00, promoted by Active Citizenship Network, the European network of Cittadinanzattiva APS. The focus of the event was the challenge of advanced therapies (ATMPs, Advanced Therapy Medicinal Products), a topic related to several patients' rights - access to care, personalised treatment, innovation and information - proclaimed by the European Charter of Patients' Rights. The event was hosted by MEP Brando Benifei (S&D) and organised with the support of MEPs from the "MEP Interest Group European Patients' Rights and Cross-Border Healthcare" and "TRANSFORM". During the Day, contributions has been presented by EU institutions, the World Health Organisation, Patient Advocacy Groups from different countries, independent experts and various practitioners in the field of advanced therapies, or ATMPs (Advanced Therapy Medicinal Products).
The development of advanced therapies presents new opportunities for the treatment and prevention of a variety of diseases (genetic diseases, oncological diseases, and diseases with a long prognosis) or for restoring, correcting or modifying impaired physiological functions in humans, including the correction of genetically acquired mutations. The relevance of these innovative therapies places them at the centre of the discussion on future health and health policy choices and sustainability of the health service.
"Patients' right to innovation and patients' right to access should be inextricably linked in every area of healthcare," said Mariano Votta, responsible for European affairs at Cittadinanzattiva and Director of Active Citizenship Network. "Unfortunately, in many contexts this does not happen, and precisely in the field of ATMPs while innovation is advancing, there are even cases of withdrawal or threats of withdrawal of existing and accessible therapies, as denounced by several patient associations". These include 'Le Ali di Camilla', which has brought to the European level the case of the research centre for butterfly children in Modena, which since 2008 has been dedicated in Italy to the development, production and distribution of products for advanced therapies to treat rare diseases such as epidermolysis bullosa, and which now risks closure."
"Our priority is always to put patients' interests first," said Stella Kyriakides, European Commissioner for Health and Food Safety. "Through continuous scientific and technological development, we now have treatments that until recently we could only dream of, such as the gene therapy for haemophilia type A which was authorised in Europe just a year ago and which allows treatment with just one administration. By intervening in both the development phase of new therapies and the marketing authorisation phase, more than 20 ATMPs have entered the market, including six for the treatment of different forms of cancer. But this is still not enough: we want the new therapies to be accessible quickly, and for this reason we have developed protocols that allow, on the one hand, to speed up the development of the new drugs of greatest interest to citizens' health, and on the other hand, to make them rapidly available to patients."
"In Italy, on the subject of advanced therapies," said Anna Lisa Mandorino, Secretary General of Cittadinanzattiva, "we welcomed the openness of Health Minister Schillaci, who in a hearing in January 2023 reiterated the need to reclassify healthcare spending on ATMPs as investment spending. "A proposal that we also put forward to the European Institutions with the support of 43 patient associations from 12 countries, in the hope that it can be adopted by as many European countries as possible. On the other hand, the constraints of national health budgets cannot be an obstacle to patients' access to advanced therapies. These therapies need new and different ways of payment and accounting, which take into account the high initial costs and the large and lasting benefits over time, both for patients and for national healthcare systems.”
The 17th European Patients' Rights Day has been organised with the unconditional support of:
VITA - Value and Innovation of Advanced Therapies Coalition (consisting of Bristol Myers Squibb, Gilead Sciences, Janssen, Pfizer, PTC Therapeutics, Roche, Vertex); Boehringer Ingelheim; MSD; Novo Nordisk; Pfizer; Viatris.
To read the Italian version, click here.