EPAD17: EU Politicians, Experts and Patients commit to advancement of PCa care

04 October 2017

“We all share a common goal: for Europeans to remain as healthy as possible for as long as possible.” That is how EU Commissioner for Health and Food Safety, Mr. Vytenis Andriukaitis, started his speech during the European Prostate cancer Awareness Day (EPAD) 2017 at the European Parliament on September 27th. “Better understanding and knowledge of health risks and how to manage them are crucial. Preventing and controlling prostate cancer, and cancer more generally, is of key concern to the European Commission”, the Commissioner continued.

In his speech he underlined the importance of raising awareness to keep a healthy lifestyle, but also to further investigate the opportunities of personalised healthcare as is recommended in the Prostate Cancer White Paper. Commissioner Andriukaitis invited all participants to share this valuable resource with the EU Health Policy Platform to ensure that it reaches all stakeholders.

Together with Europa Uomo and the European Cancer Patient Coalition (ECPC), the European Association of Urology (EAU) organised this day to discuss the recommendations of the White Paper on how to  lower the risks and improve the management and care of prostate cancer, which was launched in January earlier this year. Policy makers, scientific experts, clinicians, nursing staff and patients with an interest in prostate cancer came together to contribute jointly to improve prostate cancer care in Europe.

The event was chaired by two MEPs, Mrs. Marian Harkin and Mr. Alojz Peterle, both very committed to the joint mission. Mr. Peterle, a former PCa patient himself, said it all starts with awareness. Mrs. Harkin complemented him by addressing the misconception on the disease. “Prostate Cancer is not always “an old-man’s disease” and it can threaten the lives of younger men as well. Early detection is crucial and awareness campaigns at EU and national level should make men alert to take symptoms seriously.”

Join Forces in Raising Awareness
The representatives of the two patient organisations, Mr. Francesco de Lorenzo of ECPC and Mr. Ken Mastris of Europa Uomo, addressed the necessity to collaborate. Mastris: “Patients alone cannot achieve this mission. We have to work together.” De Lorenzo added: “Together with the EAU and Europa Uomo we are an alliance to talk in one voice. However, the European Commission (EC) should and could do more. They should help us to create the same level of awareness as they did for breast cancer.” Mastris said that the awareness campaign should take into account the local level in raising awareness. Adjusting campaigns to language and different cultures increases the impact significantly.

Also Prof. Chris Chapple, Secretary General of the EAU, stressed the need to collaborate more. “We have the expertise to advise the European Parliament and we look forward to working together to make things happen. The six recommendations of the White Paper on Prostate Cancer are the starting point for the road map to lower the risks and mortality rate of the most frequent cancer in men.”

Prevention of PCa
Prof. Bertrand Tombal, President of the European Organisation for Research and Treatment of Cancer (EORTC), posed the question if prevention of PCa is a utopia. “There is no magic pill, because we have been naive in the development of  PCa trials. Researchers should therefore put more energy in identifying men at high risk as many genes are involved in PCa.” He also mentioned that the evidence for dietary changes is weak. However, the evidence of the role of exercise is increasing. “We should have a system in place to get men moving. In the European Union we currently lack a clear mechanism to actually make the changes”, Tombal concluded.

According to Mrs. Lydia Makaroff, director of ECPC, patients are co-creators of their own health. “Civil society can lead promotional campaigns. Patients can support wide dissemination and advocate prevention programmes as ambassadors, but patient organisations should be sitting at the table with politicians to discuss what patients really need. By speaking in one voice, we will raise the voice of people living with prostate cancer.”

To screen or not to screen?
“Prostate cancer kills, so it should be screened. However, no country has a structure in place to do so”, Prof. Nicolas Mottet, chair of the Prostate Cancer Panel of the EAU Guidelines, stated. “The problem is that if we do systematic screening, a vast majority of the positive results might be insignificant PCa, but still the general principle is that an early diagnosis is more readily treatable than late diagnosis.” An important recommendation in the EAU Guidelines for urologists is that the benefits and drawbacks of early diagnosis should be discussed with patient before an approach is decided upon.

“Prostate cancer kills, so it should be screened. However, no country has a structure in place to do so.”

Former patient Paul Enders said that early diagnosis is a warning. If it’s positive, the decision has to be made together with the patient. A better differentiation between low and high risk prostate cancers is crucial in preventing overtreatment. The reliability of biopsy results should also be improved. Recent developments in using MRI help to better detect and characterize the tumour. Prof. Jochen Walz stated that in the future we might be able to achieve targeted treatment with less healthy tissue lost. There is a downside; MRI is costly, from 300 to 1000 euros depending on where the patient lives. “We need to invest in a proper infrastructure with qualified and experienced urologists throughout Europe”, said Walz.

Equal access to care
And that last part is another challenge. The countries that are most affected by PCa- related deaths, have fewer resources. “Higher income countries have a higher incidence, but their facilities increase survival rates,” said Dr. Vitaly Smelov of the International Agency for Research on Cancer (iARC) and the World Health Organization. “The incidence rate of low to middle income countries will increase further due to population growth. Education on preventive matters and early diagnosis are essential to prevent mortality rates rising at the same rate as incidence rates.”

Treatment: Costs & Psychology
Luckily treatment options are expanding, but so are the costs. What are the current costs of local treatment? Prof. Dominik Berthold presented a case where the total costs of prostate cancer treatment over a period of 18 years resulted in over €300,000. He strongly recommended intensifying  research into widening the spectrum of therapeutic options, but Health Technology Assessments (HTA) should be performed on all new technologies.

“We should no longer talk about a multidisciplinary team, but about a multi-professional one.”

“It’s not only about money”, said Tit Albreht, chair of the Joint Action Against Cancer (CanCon). More and more data is showing that the anxiety with PCa patients is a permanent reality. According to Ian Banks of the European Men’s Health Forum most men just want to go back to work after treatment. “Treatment just involves a small part of the patient’s journey”, added Lawrence Drudge-Coates of the European Association of Urology Nurses (EAUN). According to all speakers there is a great role for the non-medical professional (trained nurse or psychologists), who is closer to the patient. “Nurses are identified as pivotal role in holistic care, not just medical but also physical and psychological. We should no longer talk about a multidisciplinary team, but about a multi-professional one.”

Next steps: standardize, investigate, personalise and big data
The variation between European countries makes it difficult to standardize care. “Prostate Cancer has guidelines for clinicians in 14 different countries, but for general practitioners this is far less”, said Albreht. “We must allow the patient to be informed and address inequalities in nurses and their level of education. By standardising at EU level and by extending PCa guidelines for after care as well, we can together fine-tune these guidelines for the next Joint Action which will include prostate cancer.”

There are many opportunities for research funding, explains Mr. Jan Willem van de Loo of DG Research and Innovation (EC). “We have had 83 research projects to advance healthcare with a total budget of €128 million. For prostate cancer there are several possibilities. The White Paper is a clear document with recommendations for innovative technologies and personalised health care, but it is complex. We need more research, but we will bring together funding from different member states for this.”

“How can we accelerate innovation in healthcare systems?” asked Denis Horgan of the European Alliance of Personalised Medicine (EAPM). Political involvement and commitment are key in technological advancement. Traditional approaches are limited in identifying a patient at an early stage of his disease.

According to James N’Dow, chairman of the EAU Guidelines Office, big data can be a solution. “Imagine all experiences with the disease and all of our outcomes are centrally stored and accessible for all. Imagine the new insight we would gain! However, the current structure is so inefficient that we cannot share data. What are we protecting each other from? Our most important innovations can save lives, but we have to be willing to share it.”

MEP Peterle added: “When the terrorists attacked Brussels last year, we were shocked to realize that even police or intelligence structures don’t share data on criminals. Patients don’t have unified cancer registries amongst Europe, some don’t even have them on a national level. The EAU and Europa Uomo are not alone in addressing these issues. You can count on us.”

“Money is not always the differentiator”, Peterle continued. “We are still lacking political will to do more together.” Prof. Hein Van Poppel, co-organiser of the EPAD on behalf of the EAU, emphasized that all parties present need support from the European Parliament, the European Commission, but most importantly from patients. “They need to voice their concerns and knock on the doors of urologists. The White Paper is the basis for this discussion, but this should also have some outcome.”

Van Poppel concluded: “It all starts with awareness to prevent prostate cancer, but we as urologists want to be heard in new Joint Actions when it comes to screening as well. All parties present are willing to work with the EU to improve care in a patient-centred, multi-professional approach with equal access for all European men. Urologists and urology patients hope to be invited, so together we can save lives.”

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