Being disabled and having cancer would be too much for anyone but add the stigma, inequality and often neglect then there is no match. The over three million disabled Italians who are treated as “series B” patients are well aware of this even in the oncological field, above all as regards early diagnosis and access to therapies, two areas in which there are considerable inconveniences compared to the rest of the population. A theme, that of the quality of care for these people, recently brought to attention by a series of articles published in the journal The Lancet Oncology and that the Italian Federation of Volunteer Associations in Oncology (FAVO) shares and relaunches on the occasion of the International Day dedicated to the rights of people with disabilities, which is celebrated on Saturday 3 December with the aim of increasing awareness and attention to problems related to disabilities and the commitment to guarantee concrete actions the dignity, rights and well-being of disabled people.
Tumors in people with disabilities
Unfortunately, people with disabilities can fall ill more easily with cancer also as a result of lifestyles (greater attitude to cigarette smoking and a sedentary lifestyle), the need in some cases to undergo more frequent radiographic examinations (with an increased risk to develop some tumors linked to exposure to ionizing radiation) and a general aging process which tends to occur earlier than in people without disabilities. Two studies published between 2020 and 2021 have shown a higher risk for people with disabilities of developing certain cancers (breast, cervix, colorectal, prostate and non-Hodgkin’s lymphoma) compared to the rest of the population.
Furthermore, until a few decades ago, the life expectancy of a disabled person with cancer was reduced compared to that of healthy peers. Today, however, the progress achieved by scientific research and the support guaranteed on a social level also allow them to reach adulthood. And in many cases also the elderly. “An encouraging result, on the one hand – he explains Elizabeth Iannelli, general secretary of Favo. But that also brings with it a greater probability of developing a series of more common chronic diseases in the second half of life: such as tumors. As a result, the total number of cases involving these people is set to increase. We ask that the country, on an institutional and scientific level, consider this aspect and implement a series of measures to make the health system more inclusive and truly universal, facilitating access and the diagnostic, therapeutic and assistance pathway for disabled people”. A fundamental step, considering also that a part of these patients could find themselves facing the tumor and treatment without adequate support from family members, especially if the diagnosis arrives at an advanced age.
Little involved in clinical trials
Another problem to consider is that disabled people who later also become cancer patients are very rarely involved in clinical trials and, moreover, their disabilities are not adequately taken into account in epidemiological studies. But not only. In assessing the overall conditions of the sick, the weight of the disability is not yet recognized adequately. And consequently the health systems are not able to provide the “special” assistance these patients need: in terms of availability of highly qualified personnel, infrastructure and machinery best suited to their needs, communication strategies and psychological support effective and aimed at both disabled people and their caregivers.
The analysis conducted by Liza Iezzoni (director of the Health Policy Research Center, Mongan Institute, of the Massachusetts General Hospital in Boston) identified three priorities for enhancing assistance to people with disabilities affected by cancer. Firstly, increase participation in cancer screenings: several studies, in fact, have shown lower response rates for breast and cervical cancer screenings, an aspect also due to the absence of more accessible machinery for these patients. The second priority is to facilitate the diagnostic process as the difficulty of using beds and imaging machines often leads to delays in diagnosis. Finally, it is necessary to optimize access to care and follow-up. Without considering the necessary rehabilitation. “To guarantee an adequate healthcare offer – continues Iannelli – it is first of all necessary to start from the numbers. Today we don’t know how many Italians there are who, already struggling with a disability, later fell ill with cancer. It is also necessary to increase the awareness on the part of healthcare professionals of the oncological problem linked to disability. And eliminate all barriers, physical and cultural, which often lead these people not to know the opportunities available to them and to turn less frequently to health institutions”.
The complexity of the disabled patient
What makes a person’s situation more difficult is often the complexity of their situation. The most obvious example is represented by patients suffering from an inflammatory (such as multiple sclerosis or other demyelinating diseases) or degenerative (such as Alzheimer’s and Parkinson’s) neurological disease who discover that they also have a tumor. “Many oncological treatments, such as immunotherapy, could aggravate the course of these diseases. Others, such as platinum-based chemotherapy and taxanes, worsen sensory symptoms due to the direct side effects of the treatments. This high complexity often translates into reduced opportunities for treatment due to the lack of integration between services”, explains the oncologist Paola Varese, president of the Scientific Committee of Favo. “Never before has integrated care planning been needed as in this context, with a real multidisciplinary assessment that allows for the elaboration of an individualized care project”.
The hardships of those suffering from an intellectual disability
Another one meta-analysis coordinated by Anne Boonman (researcher of the primary and community care department of the Radboud University Medical Center in Nijmegen, the Netherlands) has highlighted how patients with an intellectual disability are more vulnerable even during the therapeutic process for three reasons: a greater physical fragility which exposes them more to the side effects of the therapies, the difficulties in respecting the therapeutic plan from the beginning to the end and the limits in managing the decision-making aspects to be shared with one’s oncologist during the therapies. “Intellectual disability has multiple nuances and represents a problem within a problem – clarifies Varese. In oncology, more than in other sectors of medicine, the active participation of the patient in the therapeutic decision-making process is decisive, by virtue of the margin of uncertainty on the course and the risk of toxicity. Many intellectually disabled people are not recognized as such for the purposes of the law and therefore no one is entitled to decide on their behalf”.
How to avoid therapeutic abandonment
Therefore, if there is a risk of falling into therapeutic abandonment, how can adequate treatment be offered to these people? “Organizational difficulties are always very significant – specifies the specialist. Operators are required to have tenacity, transversal skills, solid bioethical preparation and the ability to create and sustain the social assistance network with constant effort. Not just a surplus of effort, in a moment of serious crisis for public health. But without which it is not possible to counter the isolation and the foreclosure of access to treatment”.
The map of disability in Italy and the need for more resources
In our country, there are around 3.1 million people who, due to health problems, suffer from serious limitations that prevent them from carrying out their usual activities. This category includes above all the elderly (almost 1.5 million: of which 900,000 women). Until 2019, the year in which Istat published the first report on disability, 26.9 percent of these lived alone, 26.2 percent with a spouse, 17.3 percent with a spouse and one child, 7.4 per cent with only one child, just under 10 per cent with one or both parents and the remaining 12 per cent in other types of household. The ‘geography of disability’ sees the Islands in first place, with an incidence of 6.3 percent (compared to 4.8 percent registered in the north of the peninsula). The Regions in which the phenomenon is more widespread are Umbria and Sardinia (respectively 8.7 per cent and 7.3 per cent of the population). Veneto, Lombardy and Valle d’Aosta, on the other hand, are those with the lowest incidence (4.4 per cent). “Formal tracking of disability – concludes Iannelli – is a very imperfect snapshot. Not all people with disabilities have access to the correct information to access the legal benefits connected with the disability itself: the work of the oncological networks must also take care of the social-welfare aspects. Like Favo we fought, together with INPS and the Italian Association of Medical Oncology (AIOM, ndr), to introduce the online cancer certificate in order to simplify, accelerate and improve the correct assessment of civil disability. But there is still a lot of work to do. What we can promise is that we will never leave the sick alone, especially those in the most fragile condition, also due to a previous psychic, physical or motor disability. And we will tenaciously support the values of public health, with a view to a global and continuous taking charge of the patient and his family”.