What are the main day-to-day challenges that the patients you represent face?
More than 10 million people in Europe have cancer and there are many day-to-day challenges, primarily related to the way the disease of the patient is managed and how patients cope with the issues related to the disease.
What medical technologies are relevant for cancer patients?
Cancer patients and therefore ECPC are very well aware surgery and radiotherapy are cornerstones to treating cancer patients and the advancements made in recent years have been crucial in improving survival. The continuous evolution of these technologies is of primary importance for cancer patients, not only to increase outcome, but also to decrease toxicity levels, cut rehabilitation time and overall improve patients’ quality-of-life.
What has been most helpful in allowing you to carry on with your everyday life?
mHealth plays an important role in providing new solutions to old problems. In particular, patient-reported outcomes have been greatly improved through advances in mHealth, making communications between patients and healthcare professionals easier and faster. The patient-friendly approach to many of these technologies can greatly enhances the cancer patient journey. We appreciate the EU’s and other stakeholders’ increasing focus on eHealth, but we need concrete advances on the implementation side and sustained investments.
We do not see mhealth and eHealth as revolutions, but as evolutions: better and faster ways to solve old problems and provide better outcomes for patients.
Do you think the patients you represent have enough access to optimal care and that your members know enough about what is available to support you?
Absolutely not! Access to essential cancer treatments varies considerably from country-to-country and region-to-region but in general access to optimal care is a major issue. For example, more than 65% of cancer patients in Romania who should have access to some form of radiotherapy, do not. This is unacceptable!
At the same time, reports like the CONCORD study indicate that some European countries such as Belgium and the Netherlands actually have more radiotherapy capacity than are needed for the cancer patient population.
And it is not only eastern European countries that face challenges in access to standard care: in the UK for example, treatment is not catered uniformly across the country; in Luxembourg, patients can’t often access appropriate treatment in their own country as the hospital is limited in what it can provide due to the small population base.
In general, there are not enough trained experts to help treat cancer patients appropriately. This happens regularly within countries, where patients do not have the same access to care as their fellow countrymen because of the region in which they reside.
These factors all contribute to increase the inequalities in outcome across EU countries. This can vary considerably: for every Elsa in Sweden who has an 86% chance of survival following treatment for breast cancer, there is an Ilsa or Elze just across the Baltic Sea in Latvia or Lithuania, whose survival chances drop to 69% and 66% respectively. For every Luca in Italy with an almost 90% chance of being alive 5 years after a diagnosis of prostate cancer, there is a Luka a few kilometers away in Croatia whose 5 year survival chances have shrunk to 71%.
This is not acceptable in 2016 Europe.
We are working with our members to enhance awareness about the possible treatment options available through the EU Cross-Border Healthcare Directive. This can provide significant opportunities to cancer patients across Europe who face inequalities in access to treatment; to date however, take-up and understanding of what is possible, is poor.
How important are peers/patient networks for cancer patients in managing their condition?
We believe networks are hugely important for cancer patients and we can see that it benefits patients directly as our membership expands: currently we have an active membership of more than 400 members- from small support group to large national cancer patients federations, and this is growing. ECPC can be an important resource for the latest information on cancer research, treatment and care, and therapies available in Europe, and that’s why we’ve focused so much on providing information on key European policies affecting the life of patients, like the Cross-Border Healthcare Directive. We strive to give our Members the right instrument to know what rights patients have to access treatment.
For rare cancer patients, such networks are even more important and ECPC is now the established hub for all rare cancer patients in Europe and represents them within the two main EU initiatives on rare cancers: the Joint Action on Rare Cancers, and the soon to be active European Reference Network on rare cancers.
If you had a wish to your government and the MedTech industry for the future, what would it be?
Our priority is to tackle inequalities in cancer care and outcome. We want to ensure all patients receive an appropriate standard of care across Europe.
Sustainability is in the genes of ECPC. We do not advocate for new treatments for all indiscriminately. Essential and innovative treatment alike have to be made available to the patients who need them. We understand that for companies, researching new technologies and investing in their development can be expensive, but also can bring huge benefits to the healthcare system. That is why we ask EU countries and companies alike to put patients’ needs first.
For example, we welcome the recent initiatives at EU level to find sustainable ways to disinvest in cancer care, meaning to phase out old equipment in favour of smarter investments into new one. However, these disinvestment plans have to be made with the scalpel, not with the machete: phasing out equipment for new technologies is welcome, but the overall capacity to serve an entire population has to be preserved, not to say increased. If the newest innovation only serves some patients, this is not a useful investment. The EU project CANCON will have some useful guidelines on this that prioritise ‘standard of care’.
Finally, we call on governments across Europe to implement the forthcoming CANCON guidelines fully. In particular, we welcome very much the CANCON recommendations on cancer survivorship, which will call for the creation of dedicated national survivorship care plans to be included within National Cancer Plans.