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As contemporary health care culture progresses, attention is paid to the patient's full awareness of the therapeutic path to follow. In this context, awareness of financial toxicity (FT) as a factor affecting the success of cancer treatment is growing. Toxicity in which those who face additional and unforeseen expenses that exceed their economic capacity can incur, despite the subsidiary publicistic tools available.
Right to health and the principle of healthcare safety
In our legal system, the pillars of the right to health as a fundamental principle of the individual are art. 2 and art. 32 of the Italian Constitution.
The art. 2 provides "The Republic recognizes and guarantees the inviolable rights of man, both as an individual and in the social formations where his personality takes place, and requires the fulfillment of the mandatory duties of political, economic and social solidarity".“.
The art. 32 provides “The Republic protects health as a fundamental right of the individual and the interest of the community, and guarantees free medical care to the indigent. Nobody can be obliged to a specific health treatment if not available by law. The law cannot in any case violate the limits imposed by respect for the human person“
In 2017, with the so-called Law "Bianco Gelli" the Legislator has established the principle of safety of care, which is also realized with the prevention and treatment of risk in the health sector, providing in art. 1 "Safety of care in health care 1. The safety of care is a constituent part of the right to health and is pursued in the interest of the individual and the community. 2. The safety of care is also achieved through all the activities aimed at the prevention and management of the risk associated with the provision of health services and the appropriate use of structural, technological and organizational resources. 3. The risk prevention activities implemented by public and private health and social health structures are required to contribute to all personnel, including freelancers who work there under an agreement with the National Health Service "” [1]art. 1 Law n.24/2017 a.k.a. "Bianco Gelli".
The Bianco Gelli Law has had the concrete effect, in the context of civil law, of overcoming defensive medicine, both active (overdoses and overprescriptions) and passive (omission of treatment by the subject or the execution of therapies), through the discipline of the contractual liability of the health facility, which is obliged to respond in a contractual way towards the patient [2]as per artt. 1218 and 1228 italian civil code. This approach has led to the (gradual) greater openness of health personnel, who remain responsible only for the unlawful act [3]as per art. 2043 italian civil code.
In this context, accessibility to care is supported by resources and measures related to improving the quality of the health service such as the expansion of the essential levels of assistance (LEA) and the services provided by the NHS health services Nomenclator [4]D.P.C.M. Jan 12 2017. Attention is also paid to the distribution of the offer according to the needs of the territory, for which the approval of the New National Cancer Plan is in progress, this for the best usability of the health service.
The issue of reducing financial toxicity is part of the improvement of the health service, with access to forms of asset protection of the person both in the treatment phase and long-lived or cured "in a state of remission".
Reduction that is substantiated, both in access to employment, welfare and tax protections specific to the cancer patient and in the right to be forgotten for the long-term living.
Quality of life, sexual health
QoL. Sexual health is a psychophysical condition defined by the WHO as a "state of physical, emotional, mental and social well-being linked to sexuality" whose protection includes the treatment of the risk of discomfort and low quality of life.
Understanding the person's condition is relevant on a biological and moral level, so attention should be paid to both"body image (shame, demoralization, different perception of one's gender identity) and the emotions related to the relationship with one's partner (performance anxiety, guilt feelings, feelings of being at a loss for not having sexual desire, loneliness and uncertainty about the relationship)" [5]AIOM Guidelines longliving 2021publ. SNLG ISS. p.128.
"The most important step is to ask patients if they have any sexual health problems, if they would like to discuss it and at what time" [6]ut supra p. 132
Financial Toxicity
Financial toxicity (FT) is an afflictive health condition, incisive of the success of the therapeutic path and deriving from economic, social and relational difficulties, such as:
- The greater burden in relation to transport, such as the distance from the hospital (for example, because it is outside the region of residence) and the cost of the trip;
- The greater burden for medical expenses not covered by the NHS: examinations in a private regime (not affiliated), medicines and supplements, additional treatments;
- Failure to stipulate loan, financing and insurance agreements related to the absence of the right to be forgotten, for long-term living.
Tools available to fight financial toxicity
The condition of the cancer patient finds various safeguards in our legal system, an essential moment is the assessment by the INPS Medical-Legal Commission, to be initiated with an online application on the Institute's web portal with a digital medical certificate. Convening within 15 days (preferential lane).
Therefore, it should be remembered, briefly, that there are multiple protections accessible to the patient after having undergone theINPS assessment, including:
- Labor law. Availability exclusion for life-saving therapies. Worker's permits (3 days / month, 2 hours / day) and leave (30 days / year) and for caregivers (3 days / month, 2 hours / day; 30 days / year, 2 years, paid or unpaid). Time of respite, doubled in some cases. Solidarity holidays and rest. Further protections according to CCNL.
- Assistance and social security. Civil disability pension (100%), monthly allowance (74% -99%), accompanying allowance (in case of inability to walk or to carry out daily activities), attendance allowance for minors. Notional contribution of two months each useful working year (max 60 months).
- Taxation and medical expenses: exemption for pathology, total exemption for drugs and visits (inv. 100%), special placement lists (inv.> 45%), reduced VAT on purchases, deduction of maid contributions, deduction of 19% salary (if accompanied), deductions for dependent children, deductions for wigs, renovations (barriers), inheritances and donations (excess M € 1.5).
Transportation. Free circulation and parking pass (ZTL access). "Blue stripes" paid parking (for example, Roma Capitale). Reimbursement of transport costs for chemotherapy and radiotherapy (for example, ASUR Marche)
Financial toxicity: further effects and the right to be forgotten
FT produces further negative effects both during the therapeutic process and many years after the completion of the treatment, being particularly effective in several cases, such as:
- The reintegration into work, whose foreseen protections must be followed by their concrete application, including non-discrimination due to the (possible) changed condition of the worker;
- Failure to declare recovery (or long-term life). The right to be declared healed and the right to be forgotten (oblivion), that is, "to be forgotten", are the rights of the individual. Among the possible solutions, for example, there is the declaration of healing after 'n'years from the remission of the disease, with distinctive criteria of the various types;
- The refusal to stipulate loan or loan agreements (access to credit) or insurance products, the increase in the cost of credit and the exclusion of the insured risk or the increase in the premium with respect to a person "always been" healthy. Right not to declare previous pathologies after 'n’ years;
- Refusal to adopt minors.
Anonymity solutions that go hand in hand with theaction of the European Parliament which, through the Special Committee on Beating Cancer, intends to prepare contractual quality and transparency standards in the EU territory relating to labor, banking and insurance law.
In conclusion, it is essential to spread the knowledge of the tools that the cancer patient can use, as a benefit that can support the therapeutic path. Person who, once "in remission", must be able to achieve effective social reintegration because (finally) healed.
Avvocato Giovanni Paolo Sperti
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