Shannon Boldon

Shannon Boldon

Success in sarcoma policy: lessons for rare cancer communities

24 April 2017

hands cupping two yellow awareness ribbons

Patients with rare cancers face a common set of challenges. Sarcoma provides an interesting model of successful policy initiatives from which other rare cancer communities could benefit.

Rare cancers are defined by Rare Cancers Europe as those with a prevalence of fewer than five cases out of a population of 10,000.

While specific rare cancer communities often lead research and advocacy initiatives within their own sphere, many of the issues they face are mirrored by other forms of rare cancer. Most of these issues are linked to their rarity and the consequent difficulty in finding specialist care.

In recent years, the sarcoma rare disease community in Europe has been making great strides in the policy and advocacy arena. In February this year, the Sarcoma policy checklist was launched. Developed by a multi-stakeholder policy group, it offers concrete policy recommendations on where efforts are most needed, and looks at how six EU countries are doing in these areas. Additionally, the European Reference Network for Adult Cancers (solid tumours) (ERN EURACAN), including sarcoma, was launched in March 2017. It provides a dedicated network for cross-border collaboration on sarcoma care.

Most of the issues faced by rare cancer communities are linked to the difficulty in finding specialist care.

Priority areas for policymakers

The Sarcoma policy checklist recommends five priority areas for policymakers to improve sarcoma care for patients. It also outlines ongoing initiatives in each domain.

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, nor are accreditation systems in place to monitor care over time

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

Often, training on rare cancers is not included in the general medical curriculum, nor in the oncology curriculum. Because sarcoma is so rare, many healthcare professionals may go through their entire career without coming across a single case of sarcoma

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 providing high-quality sarcoma care to patients

4. Greater incentives for research and innovation

Funding for basic research in sarcoma is inadequate. Greater funding of public–private partnerships is needed

5. More rapid access to effective treatments

There is a need to improve access to effective treatments for patients and to reduce inequalities

The new European Reference Network

At the European level, the newly established ERN EURACAN will connect 900 highly specialised healthcare units and 300 hospitals from 26 countries. European Reference Networks aim to tackle complex or rare medical conditions that require highly specialised treatment, a concentration of knowledge and resources. They allow for patient cases to be reviewed among a ‘virtual’ advisory board of medical specialists in different disciplines through an IT platform and telemedicine tools. The idea is that the medical knowledge and expertise – rather than the patients – will travel.

ERN EURACAN is the first European Reference Network to be established for rare adult cancers, and one of few European Reference Networks dedicated to cancer. ERN EURACAN for sarcoma aims to reach all EU countries within five years and develop a referral system to ensure at least 75% of patients are treated in a EURACAN centre.

European Reference Networks: what advantages might they bring for sarcoma research and care?

  • Greater opportunities for patients to participate in clinical trials and receive optimal treatment and care through cross-border collaboration
  • The creation of registries and consolidated collection of real-world data, working to agreed common standards
  • The development of quality assurance mechanisms for laboratory testing
  • Training and education tools for health professionals
  • Accelerated exchange of information, biological samples, radiological images, other diagnostic materials, and e-tools for telemedicine between participating centres

Sharing best practice

Both the Sarcoma policy checklist and ERN EURACAN provide good examples of policy initiatives that can be shared and modelled among other forms of rare cancer to improve care. In this age of scarce resources, it does not make sense to reinvent the wheel – instead, we should learn from one another and build on best-practice examples, or shape them to fit local contexts.


To read more about this topic:

Download a copy of the Sarcoma policy checklist.


The opinions expressed in this blog are those of the author and do not necessarily represent the views of The Health Policy Partnership.