Forum at the panel discussion of the Association of Slovenian Cancer Patients OrganisationsWill the state be able to continue to maintain and develop a high level of oncology in the future?
Ljubljana, 12 February 2020 – The Association of Slovenian Cancer Patients Organisations Onko Net has joined forces with Slovenian cancer management experts to raise awareness of the increasing burden of cancer in Slovenia, rapid development of oncology treatments and associated improvements in treatment success and survival rates of cancer patients while rates of survival for the most common cancer types remain slightly below European average. The Onko Net association emphasized the need for faster access to diagnostics that are essential for early detection, early treatment and positive outcomes; the need for systemic regulation of comprehensive treatments for cancer patients that include timely rehabilitation; assurance of spatial and personnel conditions for safe treatment of cancer patients, and the need for rapid institution of appropriate palliative care. Members of the organisation called on those responsible to assure personnel, organisational and financial resources to maintain the current standard and ensure further development of comprehensive care for cancer patients in Slovenia.
As many as 15.000 persons are diagnosed with cancer each year in Slovenia and with population aging the number will likely continue to grow. Effective national screening programs and access to modern oncology treatments cancer in Slovenia is in many cases becoming a well managed chronic disease. Currently there are almost 107,000 people living among us who once had cancer. Despite the fact that the five year cancer survival rate in Slovenia remains slightly below the European average, or as izr. prof. dr. Vesna Zadnik, M. D., Head of Epidemiology and Cancer Register at Ljubljana’s Institute of Oncology explains: “Survival of Slovenian cancer patients is improving in practically all cancer types. It has doubled over the last thirty years. We are also seeing a reduction of differences between women and men who had much lower survival rates in the past. International comparisons of cancer survival rates are available as part of the Concord study. Comparisons were made only for the most common cancer types. In most locations Slovenia is placed slightly below the European average.”
Acting Medical Director of Ljubljana’s Institute of Oncology izr. prof. dr. Viljem Kovač, M. D., added that survival rates of Slovenian patients with rare cancer types are above average. He listed a lack of personnel and spatial constraints as the greatest problem of oncological treatment and described the greatest achievement as: “We can be proud to provide Slovenian citizens with screening programs that are among the most successful in Europe. Patients have access to practically all modern clinical treatments including the most demanding ones. The Institute of Oncology has since its inception strived for comprehensive treatment and research work. That is why patients can now receive various forms of comprehensive treatment: surgery, radiotherapy and many different systemic treatments. However, the aforementioned constraints of space and personnel limit us and prevent us from pursuing certain activities as intensively as we would like to, although we do engage in them.”
If early detection of cancer in target groups through national screening programs has been very successful, early diagnosis of suspected oncological diseases in the remaining population is very difficult in Slovenia due to excessive waiting periods at all levels of healthcare. “In the fields of cancer of the digestive tract, gynecological and urological cancers imaging diagnostics procedures in Ljubljana University Medical Centre are the limiting factor, especially CT. A contributing factor in this problem is also a great inflow of patients from other Slovenian regions. Through great efforts we are able to ensure timely imaging diagnostic procedures in most cases. We are expecting that the delivery of new CT devices and modernizations to other equipment will improve the situation. In cooperation with the Institute of Oncology we use state of the art procedures for our patients (surgical, radiotherapeutical and systemic). We also carry out robot supported surgical procedures for prostate cancer.«, reported Medical Director of the Ljubljana University Medical Centre prof. dr. Jadranka Buturović Ponikvar, M. D.
Director General of the Health Insurance Institute of Slovenia Marjan Sušelj said that the Health Insurance Institute of Slovenia recognized cancer patients as one of the most vulnerable population groups and that the increasing burden of cancer is becoming an increasing challenge for Slovenian society. Population aging requires effective organization and financing of public healthcare services on one hand and effective promotion of health on the other, with projects that include the promotion of healthy lifestyle and care for a healthy environment and food. Mr. Sušelj went on to say that “the Health Insurance Institute of Slovenia has therefore been increasing its investments in this field by paying for diagnostic and treatment procedures for cancer patients without limitations and in line with the actual needs of patients. We are also carrying out very effective screening programs for managing different types of cancer (DORA, ZORA, SVIT), introducing new, more effective medicines and state of the art diagnostic procedures. A 50 % vaccination rate of girls against HPV is among the best in Europe and we support the introduction of such vaccination for boys due to its exceptional success in preventing cervical cancer. Last year we introduced state of the art diagnostics procedures in hematology and this summer we will begin financing new gene testing in molecular genetic diagnostics for oncology. Studies of the Institute show that it is very important that we institute new effective screening programs for certain other cancer types such as lung and stomach cancer and to assure sufficient capacities (personnel, space, buildings) and appropriate organization of healthcare services by introducing regional centers for most common cancer types. All these measures will require us as a society to allocate much more money for healthcare, perhaps also by introducing excise duties on tobacco and alcohol that are causing us plenty of harm.”
Mojca Gobec, Director General of the Public Health Directorate at the Ministry of Health reminded of the importance of primary and secondary prevention efforts and comprehensive rehabilitation for cancer management, praised the effectiveness of national screening programs and undertakings from the National Cancer Management Plan and also expressed the need to institute a network of hospitals for treatment of common cancer types: “To enable clinical registries to better monitor the quality of oncological care. Such measures were taken by many countries and our data also shows that cases where cancer is treated with a professional and interdisciplinary approach from the very first step record much better survival rates than cases where things become derailed and end up either at the Ljubljana University Medical Centre or the Institute of Oncology. Increased incidence of cancer also requires planning of personnel in oncology”.
Kristina Modic, President of the Onko Net Association praised the achieved level of oncological treatment and expressed the expectation that the healthcare system will continue to ensure and develop it in the future. “Slovenian cancer patient organizations praise the current level of oncological treatment and assess it as good. We also find that development is progressing very fast, treatments are evolving and becoming increasingly personalized and therefore much more demanding in terms of content, organization and spatial requirements, which is placing greater demand on service providers and the healthcare budget. Although we are pleased with the current level of treatment of oncological diseases, there do remain certain areas of oncology that need to be improved and upgraded in order to catch the most developed countries in Europe. That is why we wish to emphasize certain very important and open issues in the field of comprehensive treatment of oncology patients which we cannot be satisfied with. These include early discovery of the disease, timely diagnostics and rapid commencement of treatment; timely access to state of the art and arising treatment methods; the right of cancer patients to receive treatment in safe premises; to patient access to systemic comprehensive rehabilitation; to systemic and accessible comprehensive paliative care; to the right of patients to equal quality of treatment regardless of their place of residence, which would certainly be better served with the introduction of clinical registers and access to clinical trials.” Kristina Modic added further that there were several areas deserving of greater attention and activation in clinical practice and state level and emphasized:”It is important that the National Cancer Management Plan receive greater support from those responsible in the country, so that its goals could be better achieved in practice. Currently - with the notable exception of screening programs - these goals remain unmet.”
Access to medicines and new technologies in oncology in Slovenia is generally good. Improvements are possible in short time after new therapies are classified in Slovenia once they receive approval from the European Medicines Agency. Recent data shows that the average time for classification of all new medicines in Slovenia is 417 days while oncology medicines take 496 days on average. The main challenge in the introduction of new medicines is the interim period between a new medicine being approved by the EMA and being classified on a list in Slovenia. Patients who have exhausted all treatment options or who do not have treatment options available at all may receive medicines not yet approved in the EU through the mechanism of the so called compassionate use. When a medicine is approved in the EU compassionate use is no longer possible and patients must wait for classification in Slovenia. The interim period may prove to be too long, especially for oncology patients. That is why the Forum of International Research and Development Pharmaceutical Companies, EIG, supports the introduction of the procedure used in Germany, where medicines are classified immediately after receiving EMA approval and the procedure of evidencing the cost efficiency of a medicine begins after classification. Mag. Barbara Stegel, Secretary General of the aforementioned Forum, also went on to say: ”In oncology the future is happening today, practically day to day. Studies, research and development of more effective, safer and more patient friendly medicines and diagnostic procedures never end. Development is focusing particularly on patient adapted treatment, firstly in the field of immunological treatment and secondly in the field of gene therapy and targeted treatment. In these new developments genetic diagnostics is a key component. With development moving as fast as it is, it is our common wish that regulatory procedures, financing systems and healthcare organization could adapt just as fast in order to provide patients with access to new and more effective therapies.”
Prof. dr. Samo Zver, M. D. , Head of the Clinical Department of Hematology at University Medical Centre Ljubljana, presented efforts to institute treatment using the new CAR-T cell therapy that is already available abroad to certain patient groups that had no success with other therapies and which our experts wish would be made available in Ljubljana for all Slovenian patients in need. He reported on problems during implementation of CAR-T treatment into clinical practice due to constraints of space, equipment and legislation, which the Department is trying to overcome and assure conditions for fast introduction of this new therapy into practice in Slovenia: “We are small, there isn’t 90 million of us like Germans, but we do have intellectual potential and we need to connect. And in the area of this new treatment we intend to connect with the Faculty of Medicine, the Blood transfusion center and other professions to find what each of us can contribute. We have the knowledge, the will and the assurance of the Director General of the Insurance Institute for the funding necessary to set up the “machinery”, but it is a long road. I believe we will be able to set up our own CAR-T treatment technology within two years. But the hurdles are endless. Let me just mention the Medicinal Products Act. In the section pertaining to advanced treatment medicines, the Act currently states, to put it simply, that we can develop CAR-T cells for a patient, but we must not administer them. Such absurdities must be changed.”
President of the Onko Net association Kristina Modic emphasized the issue of inappropriate premises where some oncology patients have been receiving treatment: “I wish to emphasize the Clinic of Gastroenterology at the Ljubljana University Medical Centre, where patients are receiving chemotherapy in the basement hallways. Some are even hospitalized there for several days. Yes, in the hallways. The other patient treatment facilities at the Gastroenterology Clinic are outdated and inappropriate for both patients and staff. I ask myself whether these factors contribute to poor treatment outcomes? The second critical point are the life threatening premises of hematology clinics and other specialist outpatient clinics of the Ljubljana University Medical Centre (Poliklinika). These host patients with blood cancers who have received the most demanding oncological treatments with HSCT and have greatly diminished immune systems in spite of having received treatment. Their lives are literally in danger.”
The Onko Net association concluded the panel discussion with a call to those responsible to immediately begin resolving both critical and life threatening places for treatment of patients with the most severe types of cancer.
The ONKO NET association includes the following organizations:
- Slovenian association of lymphoma and leukemia patients, L&L
- Association for the fight against breast cancer Europa Donna
- Europacolon Slovenia association
- Little Knight institution
- Ko-Rak.si association
- Men’s oncology association OnkoMan
- Association of Slovenian oncology patients