Cancer is the second leading cause of death globally. In Europe, 3.9 million people were diagnosed with cancer in 2018 and an estimated 1.93 million people died from cancer in the same year1. In fact, 40% of EU citizens are likely to face this disease at some stage of their lives. With Europe’s Beating Cancer Plan, the new European Commission is placing the fight against cancer at the top of its policy agenda.
Dr. Tit Albreht, Lead of IPAAC Joint Action and an expert on National Cancer Control Plans (NCCPs), spoke to Young Gasteiner Thomas Gelin after the EHFG 2019 session ‘A European Cancer Plan’. He emphasised the importance of focusing on prevention, early diagnosis, and patients’ and survivors’ quality of life.
Thomas Gelin (TG): You have long been involved in cancer policy and were even named “Europe’s unofficial head of cancer policy” by Cancer World in May 2019. Could you please tell us about your background and how you became involved in cancer care policy?
Tit Albreht (TA): I am a public health professional with over 30 years’ experience – at the beginning of my career I spent three years working in a vascular disease clinic in Slovenia where I dealt mostly with cardiovascular patients who had thrombosis. Through this role I became involved with many cancer patients as venous thrombosis is often a complication of cancer and pulmonary embolism.
From there I moved to public health, I was interested in the many aspects of prevention, expenditure, disease management, health system strengthening, and planning. I really began to focus on cancer policy in 2006, with the preparation for the 2008 Slovenian Presidency of the Council of the EU, where cancer was one of the key priorities of the health agenda.
Together with Professors Michel P. Coleman, Martin McKee, and Dr. Delia-Marina Alexe, we edited the ‘Responding to the Challenge of Cancer in Europe’ publication and attempted to open a holistic discussion on cancer care. The European Commission (EC) initiated the European Partnership for Action Against Cancer and then pushed for the development of NCCPs. We contributed to helping those countries without previous experience on national cancer control to build their first NCCPs.
I have also been an active advocate for screening programmes. As former President of the professional committee advising on public health issues in Slovenia, we managed to confirm the extension of HPV vaccination to boys in Slovenia.
At EU level my main focus is to contribute to the future of cancer policy, because the joint actions will not be perpetuated. Of course, we have the European Network of Cancer Registries (ENCR), European health statistics, the Joint Research Center (JRC), professional associations developing guidelines, amongst others, but when it comes to policy and governance, it often falls between the cracks. This is also the case for new challenges, such as lung cancer screening. Who will speak on behalf of the EU?
TG: We see an increasing focus on cancer at the EU level following the May 2019 European Elections. How do you see the current state of cancer policy across Europe? Why is it important to build Europe’s Beating Cancer Plan and how can the EU concretely support the Member States?
TA: As already mentioned, the EC really began to focus on cancer policy in 2009, calling on Member States to develop NCCPs. The response was mostly positive. Indeed, most countries have a plan now, but we observe three major issues and shortcomings.
Firstly, although many plans are ambitious, they often fail to include very important components of cancer care. One is a commitment to collect and manage relevant data via population-based registries and clinical registries. Then, of course, the second issue, which we explored in the previous Joint Action is the lack of guidelines, especially on how to manage patients after active treatment (i.e. after-care). We have plenty of professional guidelines (e.g. how to start treatment with algorithms, options, etc.), but when patients finish their course of treatment, follow-up care, such as regular medical check-ups, is really contingent on the individual assessment of oncologists or the respective cancer centers. Additionally, we observe significant variations in the recommendations between patients within and between countries. The second major issue has to do with the implementation phase. In too many countries the NCCPs are lacking not only key indicators, but also evaluation and monitoring systems. Most of them have not been assigned any timeline, deadlines nor milestones. We all know that, in this context, it is very difficult to assess progress. The third aspect significantly overlooked in NCCPs are the social implications of cancer survival. How to rehabilitate patients who have survived cancer? How to ensure that they can go back to work and live normal lives? How to fully protect them from being harmed economically in terms of employment opportunities affected by their disease?
Regarding Europe’s Beating Cancer Plan, the new Commission with Stella Kyriakides seems to be more focused on health and committed to driving forward cancer policy. We need a framework to support countries and inspire them to be committed to solving these important societal issues. In Western Europe, where cancer incidences and associated mortality are decreasing, cancer still remains one of the main causes of deaths, especially amongst men. We cannot exclude that this trend will be reversed and increase again with issues associated with ageing. Therefore, a continued policy action is needed. In Central and Eastern Europe it is very important to have a strong focus on prevention and social determinants of health, and address issues related to key risk factors such as smoking, obesity, alcohol consumption or the lack of physical activity. The EC has a clear mandate to help boost public health.
Another important role for the EC is to drive the harmonisation of Health Technology Assessment (HTA) policies and practices. Small EU countries do not have the capacity to undertake HTA assessments on a large scale. This includes pharmaceutical products, but also laboratory tests, medical devices, surgical equipment, etc. Small countries feel that they are very much in the dark in this respect. They do not have the resources to go beyond medicines, and even less so for the most innovative technologies, such as Chimeric Antigen Receptor T-cell (CAR-T) therapy. Some of the gaps have been bridged by EUNetHTA, however, the variations across countries remain significant.
TG: Building comprehensive country dashboards was mentioned several times in the session on cancer care at EHFG 2019. In your opinion, what are the key components that stakeholders should focus on?
TA: There are three groups of issues. One is prevention and screening to measure what countries are doing, for example in tobacco control and alcohol prevention. Similarly, we need to assess how the screening programmes are organised and how data is linked to registries. Then, it will be key to focus on the entire care infrastructure to monitor care and assess patient outcomes (namely, immediate patient outcomes, but also survival rates after five years and beyond). Another important aspect to consider is the societal determinants of health. If we look at the French VCAN study focusing on cancer survivors, you can really track the patient population, measure outcomes, and readjust your approach where necessary. This survey may be expensive and complex to set up in the first instance, but it allows you see how the system is performing and what challenges patients are facing in their post-treatment course.
TG: The patient community is often divided on whether to advocate for cancer diseases as disabilities. What is your perspective on that?
TA: Yes, absolutely. There are two sides to this debate – on the one hand there is a risk of stigmatising the patient community, but on the other hand this recognition could bring an additional layer of social protection and rights to cancer patients. I think it is important in this debate to focus on the specificities of cancer patients. The first psychological shock for cancer patients is: Am I going to survive or not? The second shock is: If I do survive, will I be able to continue living a normal life?
If you have cardiovascular disease, for example hypertension, and it is diagnosed early, you don’t think about getting a heart attack. The complication will come some time in twenty or thirty years probably, but you are not necessarily worried every day. The first course of treatment is relatively easy: patients take pills and that is pretty much it. For diabetes patients, it is more or less the same approach. With cancer, you are diagnosed and then starts an extremely debilitating treatment plan. For six months, patients are completely focused on it and are unable to continue working or exercising. Most have to adjust their daily routine, remain on sickness leave, and modify their lifestyle. Due to visible side effects, some patients prefer to avoid social contact. We should never forget that cancer is taking an important toll on patients.
This interview was conducted by Young Gasteiner Thomas Gelin.
Thomas is Senior Vice President, Health Policy Lead, Europe at Porter Novelli.