CONSIDER Volunteering and the third sector not only in the moment of emergency, but as interlocutors to plan the new healthcare from the very beginning. Healthcare that must no longer be hospital-centric – and the pandemic has taught us this well – but built in such a way as to break down inequalities and promote proximity and community medicine. This is the appeal launched during the conference “To cure is to take care. AIL’s mission for healthcare on a human scale“, Organized in Rome on 1 and 2 October by the Italian Association against Leukemia, Lymphoma and Myeloma together with 8 other associations – Airc Foundation, Italian Multiple Sclerosis Association (Aism), Emergency, Hemopoietic Stem Cell Donors Association (Adoces), Admo (Association of bone marrow donors) Italian Federation Onlus, Avis – Association of Italian Blood Volunteers OdV, Fiagop Onlus – and with the patronage of the Ministry of Labor and Social Policies, the Lazio Region, the Municipality of Rome and the Coni. A two-day period to reflect on the future of healthcare, solidarity and volunteering in Italy, and on the need to put the most vulnerable people at the center of welfare systems. “Now that the Covid emergency seems to be over, patient and volunteer associations want to make their contribution to re-evaluate local medicine and to hear the voice of the sick”, he says Sergio Amadori, National President of AIL: “We want it to share with the third sector bodies and for volunteering to be a partner of the institutions”.
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Starting again from home care
Healthcare is increasingly called upon to play a social role. The experience of the associations in the field has always been a fundamental resource, as Ail’s work has shown for over 50 years. Just think of home care: “The importance of hematological home care has been testified by AIL for many years now and it is thanks to the perseverance of this commitment that institutions are finally becoming aware of it”, he stressed. Claudio Cartoni, Director of the Palliative and Home Care Unit of Hematology Policlinico Umberto I in Rome: “AIL assists 2,800 patients every year thanks to approximately 43,000 home visits. The future objective is that this service is finally accredited and that it is no longer supported only by voluntary activities “.
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Building territorial networks
Home care is one of the many aspects that, if well managed, can also help alleviate the so-called financial toxicity linked to cancer, one of the topics at the center of the conference. Just think of how much transport weighs as an expense item. We are not talking about the journeys of hope, those from Palermo to Milan. Patients go into difficulty for average distances, those in the order of hundreds of kilometers, those needed to start from the province and reach the cancer center of the city. “If the NHS wants to contain this economic hardship, it must support and make the territorial networks work well,” he says Francesco Perrone, director of the Clinical Trials Unit of the Pascale Cancer Institute in Naples, among the speakers at the Ail conference: “Anyone with cancer must be able to find the answer they are entitled to near their home. It is the concept of community houses, community hospitals, which has been talked about a lot for some months. The state must invest, finance and check that the territorial response works, in particular to deal with chronic conditions, and cancer is, fortunately, more and more a chronic disease ”.
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Lo studio Proffit
Together with a group of researchers, in 2016 Perrone created the Proffit project, Patient Reported Outcome for Fighting Financial Toxicity of cancer. Thanks to their work, today we have the awareness and extent of the phenomenon. Estimates tell us that between 1/3 and 1/4 of cancer patients go into financial toxicity during treatment, and the youngest and most precarious are the most exposed to the phenomenon of impoverishment, because they risk the most negative impact. of their condition on the ability to produce income. “And let’s talk about estimates prior to the pandemic – says the expert -” but in a few months we will have updated data that take into account these long months of covid, and we will see how things stand today, that is, if the financial toxicity of cancer has worsened or not, because of sars-cov-2. We expect so, unfortunately. But we need data, hypotheses are not enough ”.
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Thanks to an Airc funding, in 2020 the authors of Proffit developed a survey tool, a questionnaire intended for patients consisting of 16 questions, 9 of which were designed to bring out the so-called determinants of financial toxicity, or, simplifying, to answer to the question: why in our country, where the health system offers cancer treatments free of charge to everyone, who gets sick with cancer, unless they have their own resources, risk being impoverished? What are the criticalities of the system on which to intervene to avoid that in addition to the discomfort of the disease, patients also suffer economic discomfort due to the disease? “There are certain important things – explains Perrone – that must be interpreted as expenditure items for patients, but also as messages to change things: messages for doctors and messages for the health system”. Transport and local medicine are one of these determinants. We see others.
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Prescribe accurately, avoid unnecessary drugs and tests
In oncology more than in other areas of medicine it is necessary that the different professionals who take care of the patient: surgeon, oncologist, radiotherapist, etc., talk to each other. If this does not happen, if the communication chain is jammed, the patient does not feel safe and tries to solve the problem outside the NHS, that is, paying private visits out of his own pocket, even if he does not have much money in his pocket. “So a message for doctors is: to strengthen collaboration and communication as much as possible between colleagues from other disciplines who deal with the patient – says Perrone – Another message is to prescribe appropriately, avoiding the prescription of drugs that do not they are covered by the NHS, which 99 times out of 100 are useless medicines. The same goes for diagnostic tests. These are hundreds of euros to be paid by individuals and not by the system.
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Supportive care
Another expense item is all those services such as physiotherapy, dental care, reconstructive surgery – which collectively are called supportive therapies – which are difficult to obtain within the health system. “Our NHS does not always guarantee them even if patients need them – continues the expert – especially in the advanced stages of the disease, and patients often pay for them. A message, this time for the health system, is to pay attention also to what goes beyond what is strictly necessary, that is, beyond cancer drugs ”.
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Cure innovative e welfare
It is increasingly a chronic disease, cancer. And it is especially so thanks to more targeted and innovative treatments. Here, but how do the most recent anti-cancer treatments impact, if they impact, on financial toxicity? “The link between innovative treatments and financial toxicity is indirect – reflects Perrone – and therefore more difficult to grasp”. It is clear that if the new drugs are much more effective than the previous ones, and actually guarantee greater chances of recovery, the patient also derives an economic advantage, because he recovers his productive capacity sooner. So if it’s effective, innovation is welcome. However, we must not make the mistake of thinking that guaranteeing innovative drugs solves the problem, because the prognosis is largely dictated by the quality of anti-cancer treatments, but also by the context, that is, by everything around the patient. “In recent years, due to cuts to the detriment of the governance of the national health system, attention has been reduced to investing in a global welfare system: we mentioned home care, but I also think about the lack of healthcare facilities palliative and personnel, for example “, concludes Perrone:” We have drugs that cost several thousand euros, which we are fortunately able to guarantee to patients, but it is clear that the new protocols, given the expense they entail, can also fall on patients , because they don’t just need drugs. The system must also invest in the context of cancer, if the NHS fails to do so, the new protocols could also worsen the financial situation of individual patients, albeit indirectly ”.
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