European policy response to rare cancers: the case of sarcoma

Today’s post is by Nora Drove, EU Regional Medical Lead, Sarcoma, Eli Lilly and Company

As an oncologist working in the area of sarcoma, I can attest to the significant disparities in the care available to sarcoma patients across Europe. We still have a long way to go in creating coherent policies that can ensure that all sarcoma patients have access to the highest quality of care.

This is why I joined a group of experts from the medical and patient advocacy community in developing the ‘Sarcoma Policy Checklist,’ a document that highlights five key areas, where policy action can make the greatest difference to improve patient experiences and outcomes in sarcoma. Looking across six European countries (France, Germany, Italy, Spain, Sweden and the UK), the checklist outlines recommendations for action to help policymakers identify what needs to be done to improve sarcoma care.

Sarcoma is a complex and heterogeneous group of rare cancers that can occur anywhere in the body.1 Sarcomas (soft tissue sarcomas, the most common type1) represent around 1% of all malignancies in adults, yet 2% of total cancer mortality2.

These realities faced by sarcoma patients were brought to the stage at the European Parliament yesterday, 8th of February, in a policy debate entitled: ‘European policy response to rare cancers: the case of sarcoma’ hosted by Marlene Mizzi MEP in the European Parliament. EU Health Commissioner Andriukaitis gave the opening address. Other speakers included Dr Peter Naredi, president of the European CanCer Organisation (ECCO), Estelle Lecointe from Sarcoma Patients EuroNet (SPAEN), and Dr Paolo Casali, coordinator of the EU Joint Action on Rare Cancers (JARC).

The recommendations of the Sarcoma Policy Checklist were also discussed, as a way to help policymakers at the EU and national levels to focus efforts. These recommendations are:

1. Designated, accredited centres of reference for sarcoma in each country

Most of the countries examined have centres of reference for sarcoma, however they are often not designated by official quality standards. As a result, patients and their physicians may not know where to seek specialist care.

2. Greater professional training for all health care professionals involved in sarcoma care

In all six countries, training on rare cancers is not included in the general medical curriculum, nor in the oncology curriculum. Because sarcoma is so rare, many health care professionals may go through their entire career without coming across a single case of sarcoma. When they do, they are not equipped with the necessary tools and knowledge to manage it. Efforts to change this are ongoing, but more needs to be done.

3. A multidisciplinary approach to care for every patient with sarcoma

Most national guidelines recognise that the organisation of sarcoma care in multidisciplinary teams is key to provide high-quality sarcoma care to patients. A particular challenge is to link primary and community-based healthcare professionals with the multidisciplinary team, as often they will be the first to see the sarcoma patient.

4. Greater incentives for research and innovation

Funding for basic research in sarcoma is low in all countries. A number of collaborative research initiatives on sarcomas exist across Europe, which may help improve the collection of real-world data, yet stronger public support for public-private partnerships is needed.

5. More rapid access to effective treatments

A key priority in all countries is to improve access to effective treatments for patients and to reduce inequalities. Moreover, more needs to be done to align data requirements for registration and reimbursement, the divergence between which may considerably delay access for patients to therapies they need.

The field of rare cancers has received considerable political attention in recent years and the launch of the European Reference Network on rare cancers (EURACAN) and the Joint Action on Rare Cancers (JARC) are both promising developments. However, sarcoma patients report some of the poorest experiences of care among cancer patients – and concerted efforts are needed to redress this situation.

All the experts involved in the authorship of the Sarcoma Policy checklist, as well as myself, hope that putting these recommendations to use can serve as a good starting point in all EU countries to achieve this goal. As care structures, research knowledge and access to appropriate therapies improve, so will the lives of sarcoma patients.




1. Stiller CA, Trama A, Serraino D, et al. Descriptive epidemiology of sarcomas in Europe: report from the RARECARE project. Eur J Cancer 2013;49(3):684-95.

2. Sharma S, Takyar S, Manson SC, et al. Efficacy and safety of pharmacological interventions in second- or later-line treatment of patients with advanced soft tissue sarcoma: a systematic review. BMC Cancer 2013;13(1):1-21. doi: 10.1186/1471-2407-13-385