IN35 CAN WE REALLY APPLY INTERNATIONAL GUIDELINES IN LIMITED RESOURCES COUNTRIES?

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IN32 LIVING WITH MBC IS LIKE WALKING ON A TIGHT ROPE, A BALANCING ACT USING ALL RESOURCES, TO HOLD ON AND REACH THE OTHER END Evi Papadopoulos Europa Donna Cyprus, Nicosia, Cyprus Balance in the world of breast cancer metastasis for a woman who is going through the experience of the recurring disease, is essential for her survival. She must find the inner and outer resources to meet the challenges of her situation, to regain control, to harness her fears, to cope, to strive for normality and create stability and continuity. Much depends on her ability to adjust to the new situation, to communicate with doctors and medical carers, to understand her disease and try and live with it. However not all people have the same skills or education or even stamina to cope with the progressing disease and the new reality with shorter life prospects. Not all patients have the inner strength to rise above their reality and to create a liveable daily life within the family, the community and the working environment. So they become emotional exhausted. Women with MBC have been neglected, their needs unrecognised, keeping most of them in the shadows overcome by depression, disappointment and anxiety. Many felt that the medical world has written them off. ‘’As patients we need our medical carers to educate us and to empower us, to make us understand, to make informed choices with them, to have a positive outlook to our condition, sustaining therapies and side effects. We interpret survival in many ways, striving to discover our options to reduce our stress, to boost our moral, to care for our self image. Whether practical or spiritual, support improves our attitude, our pain threshold and the final outcome’’. In a multidisciplinary context of a specialised Breast Unit, an MBC woman of any age, needs to be cared for by the health professionals who can understand her individual situation, age and specific needs at every step of the way ahead. She needs to know that she is safe that she can be offered the best treatment choices and trust that the doctors will work with her in choosing and monitoring, her medication regime. Patient/ advocate groups can be beneficial for empowerment and practical support. Family concerns, financial, social and work matters but also social perceptions and taboos can be a huge burden on the MBC woman increasing the distress from her disease. The health system and the accessibility to treatments may cause further uncertainty losing the precious balance and leading the MBC woman to isolate herself and finally give up. Bringing out in the open, the special multifaceted needs of an MBC patient is an effort to improve services for better survival.

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as a cross sectional example of high income settings and reflect on the policy lessons for the major emerging economies in terms of delivering affordable systems for breast cancer care, specifically focusing on India as an example of a complex emerging middle income country. [1] Fernandez-Luengo R, Leal J, Gray A, Sullivan R. Economic burden of cancer across The European Union: a population-based cost analysis. Lancet Oncology 2013;14:1165-1174. [2] Pramesh CS, Badwe RA, Sullivan R, et al. Delivery of affordable and equitable cancer care in India. Lancet Oncology 2014;15:223-233. [3] Mallath MK, Taylor DG, Sullivan R, et al. Growing burden of cancer in India: epidemiology and social context. Lancet Oncology 2014;15:205-212

IN34 BREAST CANCER CARE ACCESS AND AFFORDABILITY: ARE DRUGS THE MAIN ISSUE IN EUROPE? David Taylor University College London, Pharmaceutical and Public Health Policy Dept., London, UK This presentation begins with a brief overview of the changing disease burden due to breast cancer in Europe, and the extent to which survival improvements have been associated with an emergent pattern of advanced disease management challenges occurring in excess of a decade after the initial diagnosis. It then presents recent data on the overall costs of cancer care and oncology medicines in Europe and globally, and in particular those associated with breast cancer care and the interventions (ranging from radiological therapies to social support) required to extend and improve the lives of the individuals and families it affects. The main barriers to overcome in further improving outcomes are discussed, including the costs associated with accessing new (intellectual property protected) anti-cancer medicines. In the latter context an analysis of conflicting public and patient interests relating to drug pricing is offered. On the one hand patients and clinicians may well wish to optimise their minimal cost present use. On the other there are important benefits to be gained from providing appropriate economic and wider social incentives for both public and private investment in continuing therapeutic and service innovation. Potential solutions to current drug and other treatment related access and affordability problems are in conclusion critically considered. While the overall costs of breast cancer care are now in the order of 0.5 per cent of all health spending (ie 0.05% of GDP) in the average European nation (of which total pharmaceutical product outlays presently account for around 20 per cent – estimates to be confirmed), the benefits gained from effective treatment and care are also considerable. From an informed welfare policy perspective short term cost saving measures should not be permitted to undermine the longer term achievement of reduced suffering and loss of life caused by breast and other cancers.

THE COST OF BREAST CANCER: A GLOBAL PERSPECTIVE IN35 Richard Sullivan Institute of Cancer Policy, King’s College London, King’s Health Partners Comprehensive Cancer Centre, Guy’s Hospital Campus, London, UK Across the world breast cancer continues to have a major economic cost to countries and families. In high income settings direct care and informal costs have to be balanced with productivity losses due to premature mortality and morbidity. High resolution studies of the economic burden of breast cancer show a wide variation in health care costs per incident case, with the majority of expenditure in in-patient (surgical, pathology, radiotherapy) and medicine costs. The ability to explore these costs in relation to progress in outcomes measured by changes in mortality across Europe provides clear policy messages for emerging economies as their burden of breast cancer begins to rise with changing socio-demographics. In this lecture we will explore the relationship between breast cancer care costs and outcomes using EU28

CAN WE REALLY APPLY INTERNATIONAL GUIDELINES IN LIMITED RESOURCES COUNTRIES? G.S. Bhattacharyya1, Hemant Malhotra2, K. Govindbabu3, A.A.B. Ranada4, Purvish M. Parikh5 1 Fortis Hospital, Anandapur, Kolkata, India; 2SMS Medical College, Jaipur, India; 3Kidwai Memorial Institute of Oncology, Bangalore, India; 4Deenanath Mangeshkar Hospital, Pune, INDIA; 5Asian Institute of Oncology, Mumbai, India The Universal Declaration of Human Right states that “everyone has a right to standard of living for the health and well being of himself and his family”. Cancer patients are not an exception. Inequalities in health, is probably an excellent indicator, reflecting the inequalities in society. More-so the mix of cancer that occurs around the world is driven largely by environment, geography and standard of living. Cancer

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is often regarded differently, in different settings: preventable and often curable in developed nations but as a painful death sentence in limited resource countries. A close look at cancer incidence rates according to socio-economic, racial and ethnic groups in 80% of the world population living in developing countries, reveal significant differences; 80% all cancers are in advanced stage and are not curable, and 26% are caused by infectious disease. There is strong evidence that, patients from resource limited countries probably have higher incidence and shorter survival after diagnosis of cancer. In-fact 60% of all cancer patients are in limited resource country, 72% of all deaths from cancer occur in developing countries, and 77% of disability adjusted life years and 78% of years lost. This is due to limited access to medical treatment, un-informed about early detection, as well as the quality of available care. One of the reasons of improved outcomes of care in developed world has been due to use of evidence based clinical practice guidelines. In-fact the improvement of outcome has been due to guidance based cancer care, early detection and awareness with prevention. However the guidelines which have been developed for developed countries are difficult to adopt in limited resource countries. This is mainly because of a) Absence of expertise b) Weak infrastructure c) Costs d) Epidemiological transition and guidelines not integrated in them e) Accessibility f) Data generated is usually not from the region of application Hence very often there is resistance of application. If we are to have an internationally harmonized guideline, then these guidelines will have to have the following characters of validity, reproducibility, cost effective, representative / multi-disciplinary, unambiguous clinical applicability, flexibility, clear, reviewable, amenable to clinical audit. These guidelines should be resource stratified and must be integrable with the existing public health guidelines of the country. The concept of “resource – level appropriateness” recognises that effective intervention have progressed in high income countries through more than one generation. In a situation of insufficient healthcare infrastructure, uneducated public, not covered (out of pocket payment), calls for explicit analysis of effectiveness and cost of alternative approaches, which may help in preventing or countering natural attractions to newest, high technology (and expensive intervention); this thinking although intuitively simple, but filling in the details require systemic analysis of varying complexities.

IN36 IS A TWO-SPEED (RICH VS POOR) ONCOLOGY INEVITABLE? George W. Sledge Stanford University, Stanford, USA Healthcare disparities arguably represent the single greatest cause of cancer mortality on a global basis. Surveys of world health routinely suggest that large swaths of cancer patients die because of inadequate access to appropriate and potentially curative therapy. These disparities in turn reflect major differences in wealth between and within nationstates, and at a structural level, differences between healthcare systems designed to support public health and those that are not. To what extent are these disparities inevitable; i.e., a simple function of the relative wealth of nations? Can we significantly reduce cancer death rates in the absence of admittedly utopian prescriptions for redistribution of global wealth? Breast cancer represents a valuable case study for the issue of “Two-speed Oncology”.

Nursing and Advocacy OR37 UNMET PSYCHOSOCIAL AND QUALITY OF LIFE NEEDS OF PATIENTS LIVING WITH METASTATIC BREAST CANCER Marc Hurlbert2,3, Musa Mayer1, Katherine Crawford3, Shirley Mertz4, Virginia Knackmuhs4 1 AdvancedBC.org, Advocacy, New York, USA; 2Avon Foundation for Women, Breast Cancer Crusade, New York, USA; 3Metastatic Breast Cancer Alliance, Advocacy, New York, USA; 4Metastatic Breast Cancer Network, Programs, New York, USA MBC Alliance members (>30) work together to improve the lives of MBC patients. Objective: Review prior literature and patient survey reports related to MBC patients’ QoL needs, and assess extent to which US organizations are meeting them. Methods: (1) Research findings of >150 published, peer-reviewed research articles on advanced cancer patients’ needs, including quantitative and qualitative studies of MBC patients and their families, were summarized around the realities of living with MBC. (2) 13 surveys of ~8,000 MBC patients were examined for common concerns. (3) Desk research analysis of leading US nonprofits’ patient advocacy, research, education and support (n=16); analysis of websites (n=24) and print materials (n=27); interviews with leadership about services for patients (n=16); and online survey of helplines (n=8). Results: The extensive research base around MBC QoL issues was summarized into 6 categories: psychosocial distress; emotional support; information about the disease, its treatment, and resources; communication and decision making about care; relief of physical symptoms; and practical concerns. Sources of emotional support, individual and group psychotherapy, and counseling, as well as adequate information about the disease, its treatments, and methods to alleviate symptoms and side effects have been shown to be useful in helping patients cope with MBC. However, patients are typically not well informed in areas required for decision making about their care, and patient–clinician communication can be difficult. MBC symptoms and side effects of continuous treatment - fatigue, sleeping difficulties, and pain - and emotional distress interfere with daily life; supportive and palliative care is often insufficient. Financial hardship is a fact of life. Information and support services have a major role in improving QoL. While the majority of the major US breast cancer advocate organizations focus on meeting the support needs of the breast cancer community, not enough attention is paid to the MBC patient population. Information materials often require relatively high health literacy and knowledge of how to search and evaluate materials found on the Internet. There are limited dedicated helpline services for MBC patients; conferences/inperson networking events tend to be in large cities. Gaps in information include lack of detailed information on latest treatments, QoL, palliation, communication with health care providers, and advanced directives and end-of-life care. Conclusions: While QoL issues for MBC patients/caregivers are well understood, the resources and commitment to address these issues effectively are still lacking. Targeted information and support services addressing QoL needs are as necessary to patients as medical treatments.

BP38 METASTATIC BREAST CANCER IN CANADA: WAITING FOR TREATMENT Niya Chari Canadian Breast Cancer Network, Government Relations, Ottawa, Canada Of the 24,400 women in Canada diagnosed with breast cancer each year, approximately 5% will have an initial diagnosis of metastatic breast cancer and 30% of women diagnosed initially with earlier stages of breast cancer will go on to develop metastatic breast cancer. Although