Hellenic Cancer Federation
ELLOK
ELLOK’s vision is for comprehensive, timely and affordable cancer care for all cancer patients, assuring excellent diagnosis, treatment, psycho-social support, and survivorship care including rehabilitation and reintegration to social life.
ID: 103350832197-31
Lobbying Activity
Response to Cancer Screening Recommendation
21 Feb 2022
The Hellenic Cancer Federation – ELLOK welcomes the opportunity to respond to the European Commission’s call for evidence to update the 2003 EU Cancer Screening Recommendation, with a new cancer screening scheme, aiming to help EU countries ensure that 90% of the EU population who qualify for breast, cervical and colorectal cancer screenings are offered screening by 2025.
It is worth noting that this initiative will not only update the 2003 guidance (Council Recommendation) on cancer screening based on the latest scientific advice but it will also consider extending screening to other types of cancer.
The Hellenic Cancer Federation-ELLOK is the national umbrella organization of cancer patient associations representing all cancers, common and rare, as well as pediatric cancer. ELLOK is a volunteer patient-led and governed non-profit organization. Board members represent various cancers and regions, bringing to the Board of Directors a comprehensive picture of cancer care across Greece.
ELLOK considers that following the covid-19 pandemic all EU member states have drawn lessons about efficiency of healthcare services. This is particularly important for cancer care where resources, human, technological and financial, are limited. In cancer, efficiency is translated in delivering patient-centered best health outcomes, where patient-centered is translated into taking into consideration what is important to patients, families and societies at large.
The pandemic has best illustrated the lack of efficient primary care, which is crucially important in cancer, where efficiency starts with early, evidence based screening, accurate diagnosis and prompt efficient referral. Primary care can increase its efficiency with screening programmes based on personalized risk grouping as it can derive from the health history of people on EHRs – electronic health records.
The example of the ECIBC-European Commission Initiative on Breast Cancer that gathered more than 100 European experts, including cancer patient organizations representatives, to work diligently on the development of the new Guidelines for Breast Cancer Screening and on the Quality Assurance Development Scheme, is an excellent example on how new guidelines for cancer screening should be addressed.
The Hellenic Cancer Federation appreciates the Commission’s ambition to extend screening to other types of cancers and our suggestion is that these should include the most common cancers in Europe of the last 10 years, including lung, and prostate cancers. The efficiency of screening programmes can be assessed against the earlier diagnosis they make possible, the improved outcomes of cancer patients, against the number of people at highest risk of cancer who were offered timely screening.
We should not forget the more than 650.000 Europeans diagnosed each year with a rare cancer. The key problem that these patients face is timely and accurate diagnosis and we believe, even if rare, these patients and their physicians should also make use of the possibilities offered by the new EU Screening Recommendation. They should be informed about the possibilities offered by the ERNs -European Reference Networks for rare cancers, the specialized Cancer centers across Europe where they can get a diagnosis, 2nd opinion or treatment.
Given that the expertise on rare cancers is scattered across Europe, we consider important that expert cancer diagnosis is made possible for rare cancer patients, by the full implementation of the regulation on transborder health care. Rare cancers are often diagnosed late or misdiagnosed. Late diagnosis and misdiagnosis can delay or limit treatment, causing poorer outcomes, a lower likelihood of survival, and higher care costs. Efficiency derives from prompt and accurate diagnosis.
Read full responseResponse to Evaluation of patient rights in cross-border healthcare
11 Feb 2021
The Hellenic Cancer Federation is a national cancer patient umbrella organization, linking 41 cancer patients organizations, covering all cancers, common and rare, as well as children and youth cancer.
We share our experiences of cancer patients with various types of rare cancers who have sought diagnosis or treatment in another EU member state, as a European Cancer Patient organization, member of European Cancer Patient Networks.
A major issue that hinders the extensive use of cross border healthcare is the lack of transparency and trustworthy, practical information, easily accessible by patients. National Contact Points-NCPs should provide a wealth of easy to access, clear and understandable information about the procedure to access cross border health care, ensuring patients’ rights are mentioned and easily understood by all. However, most NCPs offer just basic information like legal texts and not their “translation” in a language understood by all of the steps the patient has to fulfill to access cross border healthcare.
The lack of guidelines on the quantity, depth and quality of information that NCPs should provide as well as the means by which it is offered raise more barriers to access. Moreover, cross border healthcare is not universally offered as several EU MSs exclude foreign nationals from reimbursement for cross border healthcare.
Our members have faced access issues related to cross border healthcare in relation to medicines, medical devices and procedures and cancer treatment.
Access to medicines: The approval of several new therapies has dramatically improved the survival in many cancers even in difficult to treat ones, increasing the overall survival. However, these new therapies come with very high prices, not affordable by the Greek healthcare system, resulting in approval and reimbursement delays and the invention of a barrier to access system, namely the unique in Europe (SHP). Moreover, the lack of an HTA organization and the many changes of the composition of the HTA committees, appointed by the Ministry of Health, create additional delays tlll new committees start to work.
Access to medical procedures, new generation biomarkers and NGS: These are not approved and patients, when prescribed these tests, have to pay them out of pocket. Brain surgeries, melanoma eye treatments, specialized proton beam radiotherapy, etc. are not available and patients have to overcome many administrative barriers to get concrete information about specialized cancer centers and when they get it, they often have to pay privately for cross border health care to overcome delays and barriers.
Clinical trials and Compassionate Usage: Rare cancer patients willing to join a clinical trial in another EU MS face various hurdles to get accepted because often the trial sponsor who pays for the experimental treatment and necessary other procedures and the national healthcare system paying only for the approved standard procedures, request the patient to pay for the latter, although normally if he had received treatment in Greece, he would not have to pay for them as they are fully reimbursed.
ERNs-National Expertise Centers-Rare cancer patients: ERNs are not known, neither to physicians of oncology specialties, neither to patients. Moreover, access to them is difficult and complex even for health care professionals and not at all for patients. Very rare cancers where the expertise for a correct diagnosis is rare, would benefit from a cross European approach. Only well informed and networked physicians will guide their rare and very rare cancer patients to ERNs and still only those well educated, motivated and proactive patients with sufficient financial means will be able to reach out to specialized comprehensive cancer centers. Oncologists are more than often too busy to research possibilities abroad for their patients, or they are unaware of the options they may have abroad and actively discourage patients from researching th
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