MEP Marlene Mizzi yesterday hosted a policy debate in the European Parliament on the need for a concerted policy response to the challenges posed by sarcomas, rare cancer diseases affecting millions of people across the EU. Commissioner for Health and Food Safety, Vytenis Andriukaitis, provided the keynote address ensuring that European Reference Networks (ERNS) for rare and complex diseases will be in operation in March 2017.
Sarcomas are an important family of rare cancers. There are over 70 different subtypes of sarcomas, which makes it difficult for physicians to develop expertise in their treatment, and for researchers to find effective treatments for each subtype.

“I am not a doctor, but I am a citizen, who like many, unfortunately, has touched cancer first hand through the illness of family members or friends. Sarcoma is a rare type of cancer affecting only a small percentage of the population, but cancer patients report one of the worst experiences and suffering with this disease,” Mrs Mizzi said. “That is why, I have decided to organise an event where experts can collectively discuss together with the patients and with representatives of the industry,  what can be done to improve the lives of sarcoma patients across Europe.”

During the event, Estelle Lecointe, President of the Sarcoma Patients EuroNet (SPAEN) organisation, and herself a cancer survivor,  introduced the Sarcoma Policy Checklist, which was created as a tool to help policymakers improve access to high quality information, treatment and care for sarcoma patients across Europe.

The Checklist was developed by a group of experts, consisting of leading patient, clinical and industry representatives on sarcoma from across Europe. It describes five key areas where policy makers may focus their efforts to make the most impact on care for patients, such as designated and accredited centres of reference for sarcoma in each country, greater professional training for all health care professionals involved in sarcoma care, a multidisciplinary approach to care for every patient with sarcoma, greater incentives for research and innovation, and more rapid access to effective treatments. 

“Sarcomas are a typical example of the gaps that still exist in terms of access to information, research and quality care for many patients with rare cancers. The Sarcoma Policy Checklist provides policymakers clear guidance to take action to address these challenges,” Marlene Mizzi said.