This story is part of our series of articles on metastatic breast cancer.
Metastatic breast cancer (MBC) has long been disregarded by advocacy groups, researchers and policymakers. As a result, little is known about the scope of the disease, its economic burden and the best way to treat it.
Estimates suggest MBC affects half a million women in the EU every year – but the precise number is unknown due to lack of data. Patients are now asking the EU to shed light on the disease.
A recent campaign in the UK, called “Secondary – not second rate” put the spotlight on MBC, finding that it kills about 11,000 people – or 31 every day. They also found that even though required by law since 2013, only one in three hospitals records data on MBC.
Only a handful of countries (UK, Denmark, Sweden, and Germany) have implemented cancer registries to better understand the prevalence and burden of breast cancer. And even when they do, not all differentiate between early and metastatic breast cancer, making the data hard to understand and use.
Another statistical black hole of MBC is its economic impact. In the EU, cancer is the leading cause of death, along with circulatory diseases, and its prevalence is predicted to increase.
A recent study put the cost of lung, breast, colorectal and prostate cancers at €55.3 billion, representing 44% of the total economic cost of cancer, but there is a lack of knowledge on the burden of the disease at a later stage.
We know for certain, however, that MBC has higher costs compared to early-stage cancer. Not only because the direct costs of the treatment that are higher and also differ between types of therapies, but also due to the indirect costs of patients and caregivers who are forced to take time off work, resulting in a loss of productivity.
This is why a cross-disciplinary coalition including patients’ organisations, health care experts, and policymakers have been asking for an improved collection of data both on the prevalence of MBC and its economic weight, arguing that a better picture of the disease will improve breast cancer pathways.
In a recent report published in October, they also noted there is a wide variety in the treatment pathways for MBC – something due to the lack of coherent decision-making process and knowledge about MBC patients’ needs, but also faulty evidence-based guidelines implementation.
Even when treatment guidelines exist, they are often disregarded, due to perverse incentives. In France, Germany and Spain, for instance, hospitals get a reimbursement for in-patient service. This poses a significant barrier to therapies which do not require the patients’ hospitalisation.
The report notes that there are no uniform guidelines for MBC that take into account patients’ needs, and “almost no research has been done into the development of quality criteria needed to evaluate metastatic breast cancer.”
That’s something the European Commission has been seeking to address through its initiative on breast cancer, by launching a platform tasked with collecting reliable, evidence-based guidelines for every stage of breast cancer treatment.
Following a public consultation, patients’ feedback requested a specific focus on metastatic breast cancer, a suggestion the Commission took on board and will be “developed at a later stage of the project”, EURACTIV has learnt.
Commenting on this step forward, Romanian MEP Adina-Ioana Vălean – who also chairs the environment, health and safety committee in the European Parliament – told EURACTIV.com:
“I welcome the result of the public consultation and the fact that the European Commission will pay a special focus to MBC. I encourage member states to also join the efforts of the Commission.”
She said modern technologies, such as telemedicine and e-health, can be adopted to improve remote prevention and care, encourage the use of advanced therapies and benefit from the Cross-border Healthcare Directive.
MBC, it seems, has long been a black hole for researchers and institutions, but recent efforts to push it up the policy agenda have brought the voices of MBC patients to the attention of policymakers.
Austrian MEP Karin Kadenbach, who has been vocal in her support of this issue, told EURACTIV: “We need the number, but we also need to know the specific needs of these patients in order to develop the right policy solutions.”
“The EU institutions can play an important role by providing the right incentives to enable European wide research collaborations to gather and process more continuous, complete, consistent and relevant data around the epidemiology, incidence and burden of metastatic breast cancer.”