Federazione Italiana delle Associazioni di Volontariato in Oncologia
Short Name: FAVO
V.A.V.O. is an umbrella organization that represents the views of over 500 Italian volunteer-based associations which are spread throughout the national territory through representatives in all the provinces, for a total of about 25,000 volunteers and 700,000 members registered and managed by an Executive Committee composed mainly of patients or former patients. F.A.V.O.’s main objectives are:
- providing a link between the cancer patient community and the Government, trade unions and cultural institutions in order to meet the changing needs of cancer patients, to support and protect their rights and to stop any discrimination;
- lobbying for equal access to the most up-to-date treatments and provision of home-based and hospice care services nationwide;
- stressing the role of cancer rehabilitation programs to improve quality of life
- Provides a link between the cancer patient community and the Goverment, trade unions and cultural institutions in order to meet the changing needs of cancer patients, to support and protect their right and stop any discrimination
- Carries out lobbying activities for equal access to the most up-to-date treatments and provision of home-based and hospice care services nationwide
- Deploys a nationwide information network and facilitating access to cancer care and psychological
- Networks with cancer patient organizations at any level (European, national, regional and local) and increases the participation influence of cancer patients on health policy-making by making their voice heard, so that their needs are met and their rights are
- evaluates inequalities in cancer care throughout the country with regards to access to new cancer therapies, home care, disability recognition and access to rehabilitation programs
- proposes sustainable solutions
FAVO has its headquarters in the city centre of Rome and closely collaborates with Aimac (Italian Cancer Patient’s Association) and shares its premises with them. To carry out tailored activities, FAVO has also established 9 Regional Committees which are:
- FAVO Lombardia
- FAVO Lazio
- FAVO Puglia
- FAVO Piemonte – Liguria – Valle d’Aosta
- FAVO Toscana
- FAVO Campania
- FAVO Sicilia
- FAVO Triveneto
- FAVO Calabria
- FAVO Piemonte – Liguria – Valle d’Aosta
- FAVO Toscana
- FAVO Campania
- FAVO Sicilia
- FAVO Triveneto
- FAVO Calabria
- MATRIX OF INFORMED CONSENT IN THE BIOBANKING FOR RESEARCH Throughout 2017, coordinated by Biobanking and BioMolecular resources Research Infrastructure (BBMRI), F.A.V.O., in cooperation with Ricerc@, the Ethics Committees network, Uniamo I.M.R., the Italian Rare Disease Federation, some principal Patient Associations, together with the biobankers, modelled a matrix of informed consent and agreed on ELS requirements of a good inclusive practice in research biobanking, starting from the patient’s information needs. Patient Associations made the difference in focusing contents and logic of the process. Key-points were: biobanking scope, balancing risk of profiling with rights due, respect and protection of genetic information, clear information on results returning and samples traceability, guaranteeing all players’ involvement in the governance
- NATIONAL CANCER SURVIVORS DAY, formally established by the Government in January 2006 after F.A.V.O. had requested its proclamation to join the worldwide event that is held annually to demonstrate that “life after a cancer diagnosis can be a reality”. The Italian event is observed on the third Sunday in
- SHORTER TIME FOR DISABILITY RECOGNITION FOR CANCER PATIENTS. FAVO has lobbied the Italian Government to reduce the time to disability and handicap recognition for cancer patients from 12 months to just 15 days, which means economic and social benefits to them and their relatives are payable earlier. As a result law 80 of March 9, 2006 was amended.
- NATIONAL OBSERVATORY OF DISPARITIES IN CANCER TREATMENTS AND CARE, established in 2008, in order to evaluate inequalities in cancer care throughout the country with regard to access to new cancer therapies, home care, disability recognition and access to rehabilitation programs. It also evaluates the economic burden of cancer, that is the costs of acute and chronic treatments and also indirect social costs from a societal perspective, which include days lost from work and delayed treatments of symptoms following the non- performance of a specific cancer rehabilitation program. Every year, in occasion of the National Cancer Survivors Day The Observatory produces a Report on the welfare situation of cancer patients in Italy, in collaboration with all
As a result of the Reports, national regulations have been amended in order to reduce disparities. For example, when the 2nd Report, published in 2010, documented significant differences in the availability of new lifesaving drugs, the Minister of Health submitted a request to the Italian Conference for the Relations between State and Regions for an immediate distribution of all drugs in all Italian regions, without any distinction. This request was approved last February.
Furthermore, to make up for unequal access to the benefits prescribed by INPS* over the national territory because of different processing procedures applied by the various local governments involved, in January 2010 a unified procedure has been introduced to evaluate civil invalidity, handicap and disability claims (decree-law n°. 78 dated July 1, 2009, article 20 amended to law n°. 102 dated August 3, 2009 – see INPS circular letter n°. 131 dated December 28, 2009). Claims are submitted online by family doctors and other certified bodies directly to INPS, which speeds up processing and guarantees equal treatment of individuals nationwide. This allows INPS to pay out the relevant benefits within four months.
- NATIONAL CANCER PLAN: FAVO’s representatives have contributed in the definition of the National Cancer Plan, and they have managed to prove that cancer rehabilitation is not an economic loss but a gain so much so that Italy has been among the few European countries that have taken a comprehensive approach to cancer rehabilitation. FAVO also supported with success the need for psychological support for cancer patients and their relatives/carers and the improtance of information and
- CANCER REHABILITATION WHITE BOOK. FAVO has made cancer rehabilitation a priority for their advocacy programs. In this respect, in 2003 the first national survey on cancer rehabilitation centres was performed, which showed rehabilitation was an unrecognized right for numerous cancer survivors, especially in Southern Italy. As a result, a project was designed to gain insight into cancer rehabilitation needs and treatment offers nationwide, and also to show that a multidisciplinary approach would be of great benefit. The project, which was sponsored by the Italian Ministry of Health, in collaboration with scientific societies, cancer institutes and experts from leading regional cancer networks. The reslut has been the publication of the 1st “White book on cancer rehabilitation“ for promoting a better quality of life for cancer
Role in the project:
WP5: Collaboration for the production of a Dissemination and Exploitation Strategy and of a Communication Plan and Social Networks, Web Portal and Media Mobilization. Contribution for ensuring inclusion of patients and Civil Society needs and expectations in NGS- Pharmacogenomics platforms for routine diagnosis. Adaptation of existing tools for patients’ consultation and action of networking with all stakeholders. Collaboration in the investigation of patients’ needs and their engagement and in the implementation of education and training guidelines by providing inputs and contacts with patients and civil society associations for their dissemination.
WP6: Contribution in the identification of appropriate strategies for empowering patients ‘decisions in the informed consents and understanding the impact of genomic information on the individual identity. Collaboration in the development of the code of conduct for genomic/genetic counseling from the patients’ perspective. Advice for guaranteeing Equity and fairness in service provision and access to benefits of genomic technologies. Contribution to the development of data-management policies in order to ensure responsible data management.
Laura Del Campo, PhD (female):
Has a long professional experience in development and management of European Calls for Tender and Proposals; Advocacy activities planning; key messages development; formulation with reference to advocacy aims; strategic opportunities identification; regional and ministerial fundings; formulation and organization of high level events, post graduate training courses, workshops and international forums on Cooperation issues and EU affairs. She holds a degree in international political sciences and a PhD in: “Energetic and Environmental Technologies for Development” c/o CIRPS”. Field experiences in African and Mediterranean Countries. Since 2007, she is Director of FAVO, Italian Federation of Voluntary Associations in Oncology, and since 2005 of the Italian Association of Cancer Patients (AIMaC – www.aimac.it).
Flaminia Polacchi (female):
Since 2008 she is the Administrative Officer of FAVO and is in charge of the maintenance of accounts and of the Financial reporting of all the project funded by the Ministry of Labour, Ministry of Health and the Scientific Institutes. She is also an expert in accountabilityy and Financial reporting of Socio-medical projects also within European projects.
Nicola Di Flora (male):
Project designer and Project Manager; experience in European and national projects; formulation and organization of events and international workshops. Also expert in accountability and Financial reporting of Socio-medical projects within the INTERREG programme and also within Erasmus + Programmes.
Roberto de Miro, JD, SD, (male)
Law Degree magna cum laude 1989, specialised in Roman and Comparative Law, Teacher of Law and Economics, Admitted to the Bar in 1993, at the High Courts in 2006. Concentrated in Civil litigation, Law drafting, Family, Privacy, Personal Rights, Wills, Patients’ Rights, Labour Law, Property, Mortgages and Contracts. Former member of the Working Group on the Rights of Cancer Patients of the European Cancer League. Actually Chair of the Legal Network for Cancer Patients of ECPC. Co-author, among other things, of “Linee guida nell’uso di campioni biologici a fini di ricerca scientifica” University of Trento, Forum Biodiritto 2009 (ed. CEDAM 2011) and of OECI’s “From the Biobank to the Research Biorepository: Ethical and legal Recommendations” (2010).
Additional Experts involved in the project (own resources – no EC funding)
Prof. Francesco De Lorenzo, MD, PhD (male)
Colon cancer survivor, medical doctor and former professor of biochemistry at Federico II University in Naples. Over the years he has gained a huge experience in cancer advocacy, being the co-founder, former Vice-President (2010-2013) and current President (2013 to present time) of the European Cancer Patient Coalition (ECPC). ECPC Representative within the Cancer Control (CANCON) Joint Action–WO 8 Survivorship & Rehabilitation; Patient representative within the European Commission Expert Group on Cancer Control; President of the Italian Federation of Volunteered based Cancer Organizations (FAVO), an umbrella organization representing the views of over 500 Italian
volunteer-based, non-profit associations dedicated to providing support and helping improve the
quality of life of cancer patients and families/carers; President of the National Observatory on Disparities in Cancer Treatments; President of the Italian Association for Cancer Patients –AIMaC; Former member of the National Cancer Advisory Board as representative of patient’s voice, for the definition of the National Cancer Plan.
Elisabetta Iannelli, JD, (female)
Breast cancer survivor, Attorney at law. Over the years she has gained a huge experience in cancer patients’ advocacy, being the co-founder and current General Secretary (2003 to present time) of the Italian Federation of Volunteered based Cancer Organizations (FAVO); V. President (2000 – now) of the Italian Association for Cancer Patients – AIMaC – with main experience on cancer patients’ rights; Member of the National Observatory on Disparities in Cancer Treatments; member (2013 – now) of the Central Ethics Committee – Lazio – with main experience on informed consent; member (2017-now), on behalf of F.A.V.O., of the working group (with other main Italian Patients’ Associations and with the bio-bankers) lead by BBMRI.it Common Service ELSI, that modelled a matrix of informed consent agreed on ELS requirements of a good inclusive practice in research bio- banking, starting from the patient’s information needs. Patient Associations made the difference in focusing contents and logic of the process. Key-points were: bio-banking scope, balancing risk of profiling with rights due, respect and protection of genetic information, clear information on results returning and samples traceability, guaranteeing all players’ involvement in the governance
Main publications and awards:
- Wait, D. Han, V. Muthu, K. Oliver, S. Chrostowski, F. de Lorenzo et Al: “Towards sustainable cancer care: Reducing inefficiencies, improving outcomes—A policy report from the All.Can initiative”, Journal of Cancer Policy 13 (2017) 47–64
- De Lorenzo, K. Apostolidis, F. Florindi, L.E. Makaroff, Improving European policy to support cancer survivors Journal of Cancer Policy 17 January 2018
- Baili, F. Di Salvo, F. de Lorenzo et Al “Out-of-pocket costs for cancer survivors between 5 and 10 years from diagnosis: an Italian population-based study”, Support Care Cancer (2016) 24:2225–2233
- Numico, C. Pinto, S. Gori, G. Ucci, M. Di Maio, M. Cancian, F. De Lorenzo e N. Silvestris: “Clinical and organizational issues in the management of surviving breast and colorectal cancer patients: attitudes and feelings of Italian medical oncologists”, Journal of Experimental & Clinical Cancer Research, 2014
- Lawler, T. Le Chevalier,. M. Murphy, I. Banks, P. Conte, F. De Lorenzo et Al: “A Catalyst for Change: The European Cancer Patient’s Bill of Rights”, The Oncologist published online February 3, 2014; Lancet 2014;
- De Lorenzo and P. Haylock: “Cancer Survivorship: Europe-lnequalities and Actions” Preface of “Cancer”, Vol. 119, 1st June 2013;
- Baili P, Vicentini M, Tumino R, Vercelli M, Lorenzo M, Foschi R, Guzzinati S, Dal Maso L, Minicozzi P, de Lorenzo F, Micheli A, di Salvo F; The Caremore Group. A method for differentiating cancer prevalence according to health status, exemplified using a population- based sample of Italian colorectal cancer cases. Acta Oncol.;52(2):294-302. (2013)
- Sant M., De Lorenzo F. et Information for action: building a unified European Cancer
Information System to bolster cancer control – Boosting Innovation and Cooperation in European Cancer Control – Key Fundings from the European Partnership for Action Against Cancer
- De Lorenzo: Cancer Survivorship: Europe – Inequalities and Actions, Cancer, June 1, 2013 , pag 2089
- Gnagnarella P, Misotti AM, Santoro l, Akoumianakis D, Milolidakis G, De Lorenzo F, Lombardo C, Sullivan R and Mcvie JG. A dedicated website for cancer subjects, the nutritional support study: preliminary results. ecancer 2011, 5:228 DOI: 10.3332/ecancer.2011.228
- Gnagnarella P, Misotti AM, Akoumianakis D, Milolidakis G, De Lorenzo F, Santoro L, Lombardo C, McVie JG. Nutritional support in cancer subjects: a dedicated website. The AICR Annual Research Conference 2011 on Food, Nutrition, Physical Activity & Cancer, Washington D.C., 3-4 Nov-2011.
- Gnagnarella P., Akoumianakis D., Del Campo L., De Lorenzo F., Lombardo C., Mcvie J.G., Milolidakis G., Misotti A.M., Santoro L., Sullivan R. and Van Harten Interactive nutritional recommendations for cancer patients: an OECI – EuroCancerComs study. 2011. Publisher: OECI-EEIG Reg. Brussels REEIG n. 277 D/2011/12.243/3 – ISBN: 9789080625686
- De Lorenzo et al. From Biobank to the research biorepository: ethical and legal
recommendations, discussed within the Opening Ceremony of 8th ESMO Patient Seminar 2010 and published by OECI.