by Maria Giovanna Faiella
600 thousand patients a year require palliative care (a set of interventions aimed at treating diseases with a poor prognosis). Only one in three cancer patients and 15% of children who need it have access to it. Pain therapy is also a denied right (especially in the South)
Approximately 600 thousand people would need palliative care, or – as the definition defines it law 38/2010 – the set of therapeutic, diagnostic and healthcare interventions aimed at the active and total care of patients whose disease, characterized by unstoppable evolution and a poor prognosis, no longer responds to specific treatments. Necessary care not only for cancer patients, but also for those suffering from chronic or rare degenerative diseases. And again: among minors, only 30 thousand children receive palliative care, that is, 15 percent of the children who need it, according to estimates by the Maruzza Lefebvre D’Ovidio Foundation. As for pain therapy, which is also a patient right enshrined in law 38 and the Lea-Essential levels of assistance (the services that the National Health Service must guarantee to all patients – ed.), over a third of people with chronic pain have received only one prescription in a year, while pain therapy centers are patchy, especially in the North. These are some data from the analysis of the Salutequit Observatory developed, among other things, on data from the Ministry of Health, Agenas-Italian Agency for Regional Health Services, Aifa-Italian Medicines Agency, Italia Longeva.
Law disregarded
Our country was the first in Europe to pass a law (n.38/2010) to recognize the right of patients not to suffer unnecessarily, the treatment of pain and its measurement, but also the taking on of family suffering, as well as to provide for the training of professionals and an organization according to clinical networks. However, the Salutequit Report notes, the latest report to Parliament on the state of implementation of Law 38 – which was supposed to be annual – dates back to 31 January 2019 and refers to the period 2015-2017, so there is a “gap” of information of about six years compared to the state of the art and the ability of the Health Service to guarantee a dignified life , without unnecessary suffering, to patients and their families.
Palliative care received by only one in three people who died from cancer
The 2023 budget bill has defined an important goal: by 2028 palliative care will have to reach 90 percent of the people who need it, for – as the Salutequit Report points out – the Court of Auditors has found that in 2021 (latest available data) the assistance provided to cancer patients through the palliative care network was still highly insufficient: just 5 Regions, all in the Centre-North, were able to guarantee an adequate level; among the southern regions, only Puglia comes close to the minimum threshold required, 35 percent. According to data from Italia Longeva, in 2022 only one in three people who died from cancer had received palliative care assistance, or 61 thousand people.
Hence, according to the editors of the Report, the need to fill the gap between different areas of the country and not “miss” the 2028 appointment, restarting – as early as December 2023 – the publication of the annual report to Parliament on the state of implementation of the law 38.
Pediatric palliative care: only for 15% of children in need
Things are no better for the care of young patients in need of palliative care, just 15 percent of those who need it. Tonino Aceti, president of Salutequit, underlines: These are inadmissible data for a national health service that claims to put the humanization of care at its centre. We expect concrete and decisive interventions in a short time, because those families no longer have time; Furthermore, we must adapt the offer to the real needs of the population. This applies both to pain therapy, which risks being a right only for those who live in the North – as shown by the distribution of centers and the use of drugs – and to palliative care, where today we still measure the trend by considering the assistance offered only to cancer patients who, according to European estimates, represent only 40% of adults who would need palliative care, while the remaining 60% of those who need it suffer from non-oncological chronic degenerative diseases (from cardiovascular to Parkinson’s disease) recalls Aceti. Which adds: To date they are not subject to evaluation in the new Guarantee System of the essential levels of assistance: in other words, not a parameter for evaluating the performance of the Regions in their ability to guarantee the LEAs. Therefore the Lea indicators of the Guarantee System must be updated, also including the ability to guarantee palliative care and pain therapy for chronic non-cancer patients.
The pediatric palliative care network is absent in 8 Regions
The Salutequit Report then points out that, 13 years after law 38, based on Agenas’ findings, in December 2021 two Regions had not yet established the Palliative Care Network: Abruzzo and Marche. All existing networks declared that they take care of cancer and non-cancer patients, but 14 networks had not activated the accreditation procedure.
Even worse for pediatric palliative care: the Network was not established in eight Regions: Abruzzo, Calabria, Lazio, Marche, Puglia, Sardinia, Umbria, Valle d’Aosta.
Pain therapy: what is it, the Centers (lacking in the Center and the South)
Then there is the chronic pain that many deal with for months, if not years. Around one million Italians suffer from severe chronic pain; if we then consider moderate pain, the figure doubles (reaching two million).
Pain therapy, as defined by Law 38, is the set of diagnostic and therapeutic interventions aimed at identifying and applying, to chronic disease forms, pharmacological, surgical, instrumental, psychological and rehabilitative therapies, variously integrated with each other, for the suppression and pain control.
In the absence of institutional data, the census of SIAARTI (Italian Society of Anaesthesia, Analgesia, Resuscitation and Intensive Care) finds that in 2021 there were 305 non-oncological pain therapy centers present in our country, located heterogeneously across the territory: 164 in the North , 64 in the Center and 77 in the South.
Sabrina Nardi, from the Salutequit Observatory, explains: We know that there is a disparity in terms of the presence of pain therapy centers but also – based on data from OsMed (National Observatory on the use of medicines) of Aifa – that the use of pain medications reduces as one moves along the peninsula, from North to South, where the consumption of 6.2 Ddd (defined daily doses), or approximately 22 percent lower than the national average. Even in some regions, such as Calabria, Campania, Molise, Sicily, the use of these drugs is less than 6 Ddd.
One in three patients with chronic pain has a single prescription a year
Furthermore, adds Nardi: When faced with chronic pain that needs to be kept under control, such as neuropathic pain or pain that one has to deal with even for years, it is striking that a third of patients have only had one prescription during the year. And the percentage of sporadic consumers is concentrated in the South (37.8%, in Calabria it is almost 40%). The OsMed Report itself underlines that the data on the percentages of users with a single prescription indicate the need to disseminate and implement recommendations on the use of these drugs through the training of professionals and specific audits.
Therefore, according to Salutequit, the North-South and intra-regional differences must also be filled with respect to the consumption of appropriate and necessary drugs for the treatment of pain.
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November 15, 2023 (changed November 15, 2023 | 08:15)
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