This article is part of our special report Rare cancers: Cracking the code.
European red tape should not be an obstacle to effective healthcare. For patients with diseases like sarcoma, waiting means suffering and often avoidable death, writes Marlene Mizzi.
Marlene Mizzi is a Maltese MEP from the Group of the Progressive Alliance of Socialists and Democrats (S&D group). Last week (6 February), she hosted an event in the European Parliament on the European policy response to rare cancers and particularly the case of sarcoma.
Last week, I hosted a policy debate on sarcoma – a form of rare cancer. Rare cancers have been given considerable attention within the EU lately. The Joint Action on Rare Cancers was launched last November, resulting in a dedicated European Reference Network (ERN) on Rare Adult Solid Tumours (ERN EURACAN). These developments are evidence that we are making concrete steps, at the European level, to try to address some of the considerable challenges faced by patients affected by these conditions. They also are excellent examples of what can be achieved when we gather experts across the medical, patient, policy and research world to develop focused policies with clear goals in mind.
Sarcomas are an important family of rare cancers and there are 27,908 new cases diagnosed every year in Europe. What is striking about sarcomas is their heterogeneity: they can affect any part of the body, and occur in approximately 70 different subtypes. This heterogeneity means that in practice, most doctors will not see certain types of sarcomas over the course of their career – and certainly not their medical training.
As a result, like many patients with rare cancers (and indeed, rare diseases generally), sarcoma patients often live through late or misdiagnosis, difficult access to specialist care, and limited treatment options. More than 50% of patients with sarcomas are diagnosed in the advanced stage of disease, leading to poor prognosis. Given these statistics, it is no wonder sarcoma patients report some of the poorest experiences of care for any cancer type.
What struck me during our debate last week was the two sides to the sarcoma story that were presented. On one hand, there is huge progress in sarcoma policy, research, and models of care. Professor Paolo Casali, from Rare Cancers Europe and the Joint Action on Rare Cancers spoke about the fact that the ERNs, for example, should help achieve the multidisciplinary specialist model of high-quality care for sarcoma patients that we all aspire to. ERNs should also make it possible patients with sarcoma who cannot find a specialist in their country to access highly skilled specialist care through their treating physician’s link with the ERN network. In other words, specialist know-how would travel, without the patient having to.
At the same time, Dr Peter Naredi, president of the European CanCer Organisation (ECCO) spoke of the recently published Essential Requirements for sarcoma care, which represent a multidisciplinary perspective on what every hospital should offer sarcoma patients. Dr Naredi said that the challenge is now to make sure these essential requirements are used to help drive improvements in the way sarcoma care is organised and delivered to the group – and that these Essential Requirements are met in all centres treating sarcoma patients.
Notwithstanding these significant advances, Estelle Lecointe, a sarcoma patient herself and president of the Sarcoma Patients EuroNet Association (SPAEN), presented a more sobering view of the reality facing sarcoma patients today. Ms Lecointe said that, on a daily basis, the telephones at SPAEN are ringing off the hook with calls from patients who cannot find specialist care, or treatment, in their home country, and are desperately searching for ways to access it. What’s more, despite the Cross-Border Directive, patients are often not reimbursed for their care if they get treated abroad – or they only receive what their health care system would have paid locally, leaving them to fund the (often significant) difference out-of-pocket. This is not just a problem in some countries where gaps in specialist care are known to occur, mostly Eastern Europe. For example, in findings contained in the Sarcoma Policy Checklist, a report which was launched at the debate, it was shown that in Spain, centres of expertise are limited to big cities, and patients may not always receive reimbursement from their own region to be treated in another region.
These contrasting views illustrated to me, as a Member of Parliament, the gap between policy and implementation that sometimes, as EU-level politicians, we either fail to address or are not necessarily aware of. Yes, the EU has limited competencies over health care matters when it comes to the financing and delivery of care; but this is not a justification for us not thinking through, or ensuring that we evaluate, whether the policies or networks that we put in place at an EU-level are truly achieving what they should be doing: making a difference to patient lives.
I firmly believe that matters related to health should supersede European bureaucracy – and that sometimes, the onerous processes we have at the EU level can be an impediment to making things better for our citizens. Yet for sarcoma patients, waiting is simply not an option. Waiting means suffering and often avoidable death.
That is why I believe that if we work together as one community, we will be able to address all issues facing sarcoma, and rare cancer patients in Europe. The sarcoma policy debate showcased the willingness of all stakeholders to work together to try and address these issues.