The Europe of Disparities
Are there inequalities in cancer care in Europe ?
Unacceptable inequalities in healthcare persist across Europe, both among and within countries, at the micro and macro level. The examples are endless: for instance, overall life expectancy at birth in Romania is nine years less than in Spain (Eurostat). At the micro-level, a shocking example is that a 20-year difference in life expectancy can be recorded among Londoners living close to different underground stations.
But how relevant are these inequalities in cancer care for all European citizens?
If we consider the magnitude of the cancer epidemic we are experiencing in Europe, it is simple to grasp the damages that inequalities are generating to European citizens. Overall, cancer is the second cause of death in Europe (1.3 million death/year); in 17 out of 28 Member States, cancer represents the biggest killer. In Europe, approximately 10 million people live with cancer.
Furthermore, we can measure part of the effects of cancer care inequalities: data show that survival rate in Western Europe is up to 40% higher than in Eastern Europe (depending on the type of cancer).
Survival is not the only aspect affected by cancer care inequalities: cancer costs Europe 128 billion EUR/year. Direct healthcare costs amount for only 39% (52 billion) of the total cost of cancer. The rest (61%, 63.5 billion) burdens directly on patients and their families, in terms of costs of care (assistance to patients/family members) and lost revenues due to lost years of productivity.
Survivorship does not depend only on the resources allocated to cancer care, but the massive difference in per capita cancer care expenses has an important impact on survivorship: how can we have similar cancer survival across Europe if some countries (Bulgara, Romania, just to mention two) spend less than 20 EUR/patient while other countries (France, Austria, Germany) spend more than 100 EUR/patient?
What is the Europe of Disparities?
ECPC wishes to raise awareness and find allies in order to set a structured agenda on the fight against cancer-related health inequalities affecting European cancer patients.
Europe of Disparities is composed of several initiatives:
- a conference, held in the European Parliament on the 27st January 2015, to raise awareness on the cancer care inequalities and identify experts and MEPs willing to work on the topic;
- launching a survey to ECPC and get their feed-back;
- the establishment of a working group for the production of a position paper on cancer care inequalities;
- launching the position paper at the European Cancer Congress organised by the European Cancer Organisation (ECCO) in Vienna on 27 September.
Objectives of Europe of Disparities
- Raise awareness within the European institutions about inequalities in cancer care as identified by the European cancer patient community;
- Draft and suggest a political agenda on how to tackle the pressing issue of eliminating cancer-related health inequalities in Europe;
- Reinvigorate the partnership established with 29 MEPs signatories of the ECPC Call to Action and call for more MEPs and health stakeholders to join the ECPC plea.
Europe of Disparities conference
On the 27th of January 2015, ECPC co-organised together with MEP Elisabetta Gardini (Head of the Italian EPP Delegation) an event at the European Parliament, in order to raise awareness on the unbearable inequalities in cancer care existing in Europe. The first part of Europe of Disparities aimed at raising some of the most important questions and unsolved dilemmas around inequalities in cancer care.
A high-level panel of speakers, representing patients, academia, industry and policy makers, launched the debate on the causes of inequalities in cancer care, providing cornerstone information for the work of the ECPC working group on inequalities in cancer care.
You can read the press release and download all the presentations by clicking here.
Position paper on inequalities in cancer care
In order to get our facts right and provide policy makers with a scientifically valid, brief and powerful policy document, ECPC joined forces with researchers, academics and other organisations to produce a position paper on inequalities in cancer care called “Challenging the Europe of Disparities in cancer”.
The objective of the document is to point at the principal causes of inequalities in cancer care, in particular those factors that can be tackled at the European level, and to provide policy recommendations to help policy makers design effective measures to solve those inequalities, while keeping the patients at the centre.
To do this, ECPC collected the interest and commitment of several individuals and organisation, here listed:
|Prof Richard Sullivan||King’s College London||United Kingdom|
|Prof Mark Lawler||Queen’s University Belfast||United Kingdom|
|Mr David Preece||European Association of Hospital Pharmacists||Belgium|
|Mr Richard Price||European Association of Hospital Pharmacists||Belgium|
|Ms Gabriella Almberg||European Federation of Pharmaceutical Industry Associations||Belgium|
|Prof Michel Coleman||London School of Hygiene and Tropical Medicine||United Kingdom|
In order to get first-hand, in-depth experience of cancer care inequalities, directly from individual cancer patients and national cancer patient associations, ECPC conducted an online survey in June 2015. Cancer patients across Europe have been asked to provide their input and experience to the paper, through a survey, launched by ECPC. The survey is available clicking here.
ECPC received answers from 34 patient organisations across 12 countries notably the UK (33%), Turkey (15%), Romania (13%), and Greece (8%).
Note: At this point it is important to mention that while some issues related cancer care are clearly underlined through this survey, the majority of the replies come from the UK which is recognised for its rather good health system in comparison to other European countries
The main issues addressed by the survey were:
Understanding the involvement of patient organisations in national policy making: a picture of the level and nature of the relationship between cancer patient organisations and their local/regional/national authorities.
A majority of respondents confirmed limited contact with the authorities. Furthermore, all respondents stated that they have never been approached by their national authorities to provide their input on the implementation of the Cross-Border Healthcare Directive.
Main reasons for inequalities in access to cancer care: – see table 1 –
The principal issues seem to be related to the lack of adequate information about different treatment options (78%) because doctors/physicians are not always aware of new available treatments (40%).
Cost of treatment and price affordability are additional sources of inequalities to access to care i.e high out-of-pocket costs (45.5%). Finally, respondents strongly agree that the place they live in highly influences their accessibility to new treatments and radiotherapy (78%).
Table 1: Main reasons for inequalities in access to health care
According to the additional comments received, patients also criticize:
- The underfunded health care system which can’t afford to reimburse all treatment options (Bulgaria);
- The lack of experienced doctors and specialized surgeons especially with regards to rare cancer types (Greece);
- The poor testing and lack of awareness literature for curable cancers such as bladder cancer, which is often mistaken for a simple urinary tract infection (UTI) delaying the start of the proper treatment (UK);
- The lack of knowledge on clinical trials (Turkey);
- The large number of unnecessary mastectomies (Germany);
- The fact that patients are not always reimbursed for travel for treatment outside their own country (Italy).
It is thus important to allow patients to have the possibility to access treatment in specialized centres overseas without having to anticipate the costs in order to provide them with the best possible care.
Access to screening
When addressing the topic of access to screening and access to radiotherapy, the majority of respondents confirm that there are screening programmes and radiotherapy equipment in place to ensure early diagnosis and treatment of cancer in their country (59% and 65% respectively). Among these, 40% of respondents are not satisfied with the quality of screening and radiotherapy services provided in their home county.
Access to essential medicines
Most respondents cite financial barriers or inequalities in access to essential medicines – and one respondent suggests that these barriers risk becoming greater as the system cannot cope with increasing numbers of cancer patients requiring expensive new drugs. A number of respondents also mention regional inequities within their country, with access varying between settings and determined on a ‘case by case’ basis. Also, not all cancer drugs may be viewed the same way, with more prominence or attention being given to some cancers versus others.
Access to innovative cancer treatment
When asked how they would rate access to innovative treatments such as immuno-oncology therapies or targeted therapies, respondents answered as follows:
Note: Respondents were asked to choose ‘the single best’ of the possible answers above.
As can be seen from the table above, access to innovative cancer treatments seems to vary by country, with at one extreme 16% of respondents claiming most innovative cancer drugs are fully reimbursed, and at the other, 11% claiming that patients must pay in full out-of-pocket to access any innovative treatments.
The main reason cited for lack of access was, predictably, lack of funding and cost. Bureaucratic hurdles that impede access to new therapies were mentioned by one respondent as well.
Access to biomarker testing
ECPC was also interested in finding out whether biomarker testing routinely takes place to determine the best treatment for cancer patients in the different countries. Approximately 2/3 of the respondents (65%) confirmed that such testing does take place but only in certain centres. Indeed, 53% of participants agree that this is the main barrier for the tests not always being done. Other issues are related to the expensive costs of these tests that are in many cases not covered by the government or the insurance (35%), to the lack of tissue availability (23%) or even to the fact that the doctors themselves are not aware of the need for biomarker testing (29%).
An important finding of the survey is that 82% of respondents agreed that they did not have a good understanding of biomarker testing – which points to the need for patient education and clear information on this topic, the lack of which was mentioned by one respondent. It is crucial that ECPC, with the help of its member organisations and other experts covers this information gap to make sure that all patients, regardless of their country or education understand the long term benefits of the use of biomarkers while also empowering patients to request these tests from their doctors.
Another important topic addressed in the survey is survivorship, especially with regards to physical and psycho-social rehabilitation.
In most cases, physical rehabilitation is easily accessible for cancer survivors and is, at least, in part reimbursed (59%). Unfortunately however, about 1/3 of patients (30%) do not have access to adequate rehabilitation care to ensure a timely and complete recovery.
These patients shared with ECPC the difficulties they face in accessing physical rehabilitation which are related to the lack of experts, the lack of specialised centres or even the long waiting lists. These issues often lead patients to get rehabilitation in a private form with elevated costs but evidently not all of them can afford such an option.
The answers differ when it comes to psycho-social support. In this case, most patients state that they face difficulties in accessing this type of support in their country (47%). From the additional comments received, there are also notable differences across countries. In the UK for example, this type of support is free and available but in other countries such as in Greece patients do not even consider psycho-social rehabilitation as part of their recovery since they barely have enough money for their essential medicines. Moreover, patients fear that psycho-social support services are becoming a tool for money advantage.
To conclude on the topic of survivorship, we asked patients to tell us whether cancer patients are eligible for disability benefits in their country. 53% replied positively but they further elaborated on the question by describing in more detail what patients are entitled to and the conditions for eligibility. According to the answers we received, cancer patients have to constantly prove their problems in order to receive the benefits which are automatically reduced if the health of the person improves even slightly.
To quote one participant from Fight Bladder Cancer, UK: “benefit criteria should not be based on how far you can walk, it should be measured on how your post operation life is affected’’.
Additionally, in some countries such as Greece or Hungary, only very few cases are eligible for disability benefits because the health committees examining the cases judge very harshly each situation and often reach to unfair decisions. Cancer survivors also suffer from discrimination in relation to employment and face issues with regards to reintegration. It is thus essential to incentivise employers to recruit ex-patients and to understand and respect their needs of regular examinations. Lastly, in Turkey, the benefits received depend on the cancer stage.
What’s next ?
The Europe of Disparities Paper was presented at the 2015 European Cancer Congress in Vienna, in the presence of the contributors of the paper, Prof Mark Lawler and Prof Richard Sullivan. Since the publication of the paper, ECPC made a strong plea for a more equitable access to essential cancer care in Europe. Challenging the Europe of Disparities in Cancer is ECPC’s long term policy strategy, and provides an evidence-based set of key recommendations to European and national policy-makers.
In 2016, the value of the paper was recognised by the larger oncology community. The Joint Action on Cancer Control (CanCon) used Europe of Disparities as one of the blueprints and inspiring documents to produce the “Policy Paper on Tackling Social Inequalities in Cancer Prevention and Control for the European Population”. The document, that was published in 2017, sets up the key recommendations to ensure better access to essential cancer care and prevention in all EU countries.