OVER 13 million euros raised. Almost 4,000 volunteers and active volunteers, for a total of 170,000 hours of work donated, which is equivalent to almost 20 years. Hours dedicated to 29,500 patients with breast cancer and more than 6,000 of their family members, which have allowed about 70,000 women to approach primary prevention, to make early diagnosis for about 30,000, to carry out almost 33,000 specialist visits for a value of 300 thousand euros. The funds raised also made it possible to purchase instruments for diagnosis, for a total value of 775 thousand euros, and for treatment for 400 thousand. These are just some of the numbers that account for the great value of the volunteer in the field of breast cancer in 2020, i.e.dose horribilis of the pandemic: estimates actually downwards for 12 months, however very difficult, in which, however, the activities of the associations have never stopped, although they have suffered an understandable and inevitable decline, ranging from 25 to 50% compared to 2019, depending on the items considered. Which shows how much more value associations can potentially generate, also because they are constantly growing.
Leading the analysis of the social value of breast cancer voluntary associations is Europa Donna Italia, the movement that protects the rights of women to prevent and treat breast cancer, which for the second consecutive year has collected data from 121 associations distributed throughout Italy, through a complex questionnaire with 250 questions. The new report, presented today and produced with the contribution of PricewaterhouseCoopers Business Services, this year also brings the point of view of the multidisciplinary teams of the Breast Units, i.e. the breast centers within which many associations operate, and presents both national and regional.
The associations have never stopped
“We are in the era of reporting and it is right to show how the funds raised are used. But what these extraordinary numbers really show, beyond everything, is that all these associations, if considered as a whole, carry out a truly important and impressive professional job: an operational arm complementary to that of healthcare “, underlines Rosanna D’Antona, president of Europa Donna Italia: “The importance of this dossier lies precisely in the overall view. These are associations that guarantee a widespread presence and carry out high quality work: just think that over 2,000 volunteers have dedicated 236 hours to training with courses that we have organized together with doctors and experts from the Catholic University of Milan. And the profile of the associations we represent presents a continuously growing trend. It is the re-confirmation that breast cancer voluntary associations are really serious and are a resource that cannot be underestimated ”.
Who are the volunteers and where they work
Let’s go into detail. Who are the volunteers? For the overwhelming majority (86%) women, aged between 50 and 60, and of which about a third is or has been a patient: “this is an indicator of how much breast cancer leaves in terms of of social cohesion, participation and the will to improve the treatment path “, as the report underlines. The volunteers are flanked by 600 paid employees / consultants, with an average age of 45 and who in 42% of cases have a university degree or a higher qualification (master, doctorate).
38% of the associations operate both within the breast care centers and in the territory. Only 2% work exclusively within the Breast Units: a figure that “indicates too low recognition of the work offered by this voluntary workforce to the activity of the Breast Units”, reports Europa Donna Italia.
What kind of work do they do
A large part of the work, about 60%, consists of advocacy activities: i.e. dialogue and lobbying towards institutions (municipal, provincial, regional and, in some cases, even national bodies), to bring out the needs of patients and ask for interventions to improve health care and diagnosis and treatment paths. Activities that in 2020 also focused on the critical issues generated by the pandemic: from delays in mammography screening programs to postponed surgery. The rest of the work focuses mainly on information and awareness-raising activities for primary prevention (84% of associations), guidance on secondary prevention with particular attention to adherence to screening (81%), assistance to patients, relations with hospitals and support for post-therapy wellbeing (from 59% to 64%). Other part of the time is dedicated to assistance to family members and caregivers and, last but not least, to their own training.
How the funds raised are used
In 2020, fundraising among all the associations totaled an amount of more than 13 million: a “downward” estimate if we consider that only 55.3% replied to this item of the questionnaire. In addition to financing the purchase of diagnostic equipment (over 30 equipment including ultrasound scanners, probes, magnetic resonance equipment, and so on) and medical equipment (over 5,000, including personal protective equipment, scalpels, cooling helmets to reduce the risk hair loss, mammotomas, prostheses, etc.), more than 180 thousand euros were donated to patients in the form of a donation. The funds were also used to provide patients with health services – such as physiotherapy sessions, psychological support or specialist visits – but also legal assistance, transport for the hospital (for example, the 13 associations that own 33 minibuses that allow you to bring 570 patients from their homes to treatment centers), activities for psycho-physical recovery (such as yoga, physical activity, writing and art therapy, make-up courses after chemotherapy), wig banks, thanks to young people who donate their hair for those who will lose it due to chemotherapy. Other part of the funds were earmarked for awareness campaigns.
In 2020, almost all (90%) of the associations offered visits and meetings with specialists completely free of charge. To carry out specialist medical examinations, many associations have also provided for agreements or discounts that have recorded an economic value of around 300 thousand euros and the provision of 24 scholarships for a total value of more than 250 thousand euros.
The pandemic and the advantages of digital and “smart” volunteering
That of face-to-face visits is undoubtedly one of the items that has suffered the most from the repercussions of the pandemic. Almost all associations (94%), however, declared that they were able to continue to operate, albeit in a reduced way and often in “smart working” mode, literally inventing new formulas for assistance and tele-relationships, which will probably continue to persist. , given the efficiency, also in the future. “Because if there is an advantage of having to reinvent oneself through the network – writes one of the associations – it is that of being able to reach many more people. So not all evil has come to harm ”. Many associations have also raised funds to bring medicine and treatment home to patients. In short, in the face of many services that have been reduced, inevitably, there are many reformulated or created from scratch, often using social networks.
And in the Breast Units?
For many years now, the importance of the presence of voluntary associations within the Breast Units has been recognized, so much so that it is a requirement. Still, however, not everywhere respected. The new report integrates a survey that involved the Coordinators of 139 Breast Units (out of a total of 185 present in Italy), followed by a focus group dedicated to a group selected from the 34 respondents. A lot of information emerged, including “the need to give more physical space to associations so that they are put in a position to be more present within health facilities and consequently represent a point of reference for patients, especially in situations day hospital or in the moments following the visits “. Not surprisingly in his introduction to the report, Pierpaolo Sileri, doctor and Undersecretary of the Ministry of Health, speaks of an “irreplaceable service not only to patients”
The social economy has a capital “E”
And again, in a second preface, the Minister of Labor and Social Policies Andrea Orlando, underlines: “Associative and voluntary experiences, like yours, help institutions, the public decision-maker, to innovate in the strategies of offering services of fundamental importance for the full labor integration of women. Accessible and intelligent services, capable of adapting to the real needs of women’s lives in all the various dimensions in which it takes place. But for this to happen, it is necessary first of all that the institutions, at all levels, put themselves in a position of dialogue and listening to experiences ”.
“We must also not forget that these activities mean 600-700 jobs: it means that jobs are generated for women in these structures – concludes D’Antona – In 2020 we raised and diverted funds for 13 million euros, but the sector of the Third sector on the whole hijacks billions. And all this must be regulated and reported on. Let’s talk about the social economy, which is an economy with a capital “E”.