How much is the work of patient associations worth?

How much is the work of patient associations worth?

Five large patient associations in five completely different fields - breast cancer, blood cancer, heart failure, rheumatological diseases and rare diseases - have come together to get the report done: in other words, to calculate the total value generated by their activities carried out in 2021. It took 12 months and now the data is arriving: we are talking about a total of around 20 million euros.

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The report

The five associations are part of the "Allies for Health" network, a network made up of around 70 patient associations and which Novartis has set up over 15 years ago with the aim of jointly developing transversal solutions to improve the quality of life of chronic patients and which may have an impact on the health system. They are: Europa Donna Italia (Edi, the advocacy movement that protects the rights to prevention and treatment of breast cancer, promoter of the initiative), the Italian Association against Leukemia, Lymphoma and Myeloma (Ail), the Italian Association of Heart Failure (Aisc), the National Association of People with Rheumatological and Rare Diseases (Apmarr) and the Italian Federation of Rare Diseases (Uniamo). The Report, produced in collaboration with Novartis and thanks to the support of PwC Italia, was based on the guidelines and standards for the preparation of the Social Report of Third Sector Entities envisaged by the Decree of the Ministry of Labor and Social Policies.

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The numbers

Let's get to the numbers. These five associations together represent over 19,000 volunteers who in 2021 - the report shows - dedicated one million hours of their time to awareness, prevention and patient support activities. They thus reached over 58,000 patients and caregivers. Their work has made it possible to provide 70,000 visits by specialists and 15,000 psychological interviews free of charge, and to organize over 200 communication events. On this basis it was possible to estimate the economic value generated, exceeding 20 million euros.

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The distribution of funds

Overall, again in 2021, they raised funds of over 56 million euros (through donations, public and private tenders, 5X1000 and sponsorships). Of these, 21% was used to finance projects; 29% was intended for personnel and collaborators; 4% for the purchase of treatment and diagnostic instruments; 10% to research support; 36% to cover fundraising costs (8%) and facility management (28%). The hours of work of the employees of the organizations have been over 600 thousand and the salary exceeds 13 million and 100 thousand euros.

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"The numbers in this report demonstrate the tremendous work done by the participating associations on all fronts - he writes in the report Isabella Cecchinihead of the market research division of IQVIA (a multinational that deals with data analysis in the health sector) - The growing role of advocacy and collaboration with the Institutions, an area on which the greatest expectations of training and professional growth are concentrated: many associations intend to strengthen skills and capacity for dialogue, organizational and project management skills to become increasingly credible interlocutors, capable of communicating with the decision-makers of Public Health to guarantee adequate and homogeneous services and levels of assistance. Finally, the growth of collaboration in scientific research is also expected: not only to increase awareness of the role of the patient who participates in a trials, but also and above all to become an active player in the design of studies in order to best adapt it to the needs of patients and improve their quality of life and experience".

And again: "This is the path that the world of voluntary associations in Italy, still fragmented and evolving today, is taking, with ever greater awareness of its value in supporting patients but also in supporting the sustainability of the Healthcare System".

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But proving value is a challenge

One of the challenges is to bring evidence of this value, as he points out Rosanna D'Antonapresident Edi, in the document: "Our contribution is perceived as soft, but when we contribute to the affirmation of genomic testing (for breast cancer, ed.) and we reach an investment of 20 million, we are anything but soft. There is a provision that says that in the Breast Units there must be a psycho-oncologist but, if we carry out a check and highlight that only 25% of the structures meet this requirement, it becomes a priority objective for us to fill this gap; we succeed with ten acia and competence, moving the necessary levers, but when we solve the problem, it is not always easy to demonstrate the central role we have had".

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The push for research

The report contains interviews with the presidents of all the associations involved, and the first question - the same for all - concerns precisely the most significant and most difficult value for each to demonstrate. For Ail, it is the commitment to research, "supported not only by the State but also and above all by the important contribution of associations and civil society - he writes Pine Bull, national president of the Ail-. In 2022, Ail disbursed over 3 and a half million for research, financing the GIMEMA (Italian Group of Adult Hematologic Diseases), over 200 research projects, doctors, data managers, biologists, nurses and psychologists".

If the patient is informed

For the Italian Heart Failure Association (Aisc), founded only in 2014, there is also the priceless value of the informed patient. We are talking about an underestimated pathology, although it represents the first cause of hospitalization and re-hospitalization. "The main objective was to disseminate knowledge of the pathology, the recognition of symptoms, the drugs available, the results achieved by scientific research, the importance of early diagnosis, the possibilities of living with a chronic, disabling, progressive disease characterized by comorbidities - reports Maria Rosaria di Somma - The response from patients was immediate and we realized that when the patient is informed, it also brings value to the dialogue with the doctor. The awareness activity of the association contributes both to the improvement of treatment, making up for the limited time available to the doctor during the visit, and to a prompt diagnosis of heart failure and consequent benefits, for example in preventing hospitalization".

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How much do you "earn" by simplifying a process?

Again: there are problems that may appear numerically irrelevant, but whose solution has an enormous impact on people's lives. An example? Italia Agresta, president of Apmarr, talks about the supply of drugs: "It happens that people who have to comply with their treatment plan find themselves in the position of having to go to a distant district pharmacy, take holidays for collection, and find the drug unavailable or the pharmacy closed. We work so that everything becomes simpler for the patient, so that the path relating to the procurement of the drug is more streamlined and specific services are activated. It is an intervention very concrete: defining more suitable times and activating home delivery, a solution that would improve the quality of assistance and life, therefore perfectly congruent with our mission. Sometimes it is the associations that fill the gaps in welfare, the gaps in a social-health system that has had flaws since time immemorial".

The social value of protecting the most fragile

For Annalisa Scopinaro, president Uniamo, the most difficult and important commitment to account for is having raised awareness that rare diseases exist, that people with rare diseases have a need and that today there is a Federation that protects them. "How can we demonstrate that it was thanks to Uniamo that the single text on rare diseases was approved? In fact, this goal would not have been achieved without Uniamo. Screening was not the subject of attention. In Europe there are at most 9 pathologies, we have 49, so certainly in Italy there is a more accentuated sensitivity, but if there had not been a Federation fighting for this every day, we would not be at this point. When in our Report we wrote that there are presumably more than 2.2 million patients, many were surprised: but this has meant that from next year we will try to change the source of the data and to count people with rare diseases differently".

It is increasingly clear that associations do not only take care of people but, precisely thanks to their ability to support and listen to patients' needs, they are able to bring their requests to decision-makers through a competent and complex advocacy activity. Still, however, difficult to quantify.

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