On the occasion of the final event of the Women in Rare campaign – the centrality of women in diseases, 'Women and rare diseases: impact on life and expectations for the future', the first Italian white paper, was presented today in Rome, at the Senate , with information, qualitative investigations and testimonies from patients and caregivers. In Italy – explains a note – there are more than 2 million women who deal with a rare disease on a daily basis, more than 1 million as patients and the same number as caregivers of a family member, very often a son or daughter. In fact, 70% of these pathologies arise in childhood, with 19 thousand new cases every year and a total of 2 million people affected in our country.
To shed light on the difficulties encountered by female figures in the daily activities of assistance and care for themselves or a relative and to respond effectively, Women in Rare was born in 2023 – the centrality of women in rare diseases, conceived and promoted by Alexion, AstraZeneca Rare Disease together with Uniamo (Italian Federation of Rare Diseases) with the participation of Fondazione Onda Ets, EngageMinds Hun and Altems of the Catholic University. The project was carried out with the contribution of a scientific committee made up of experts from different specializations in the field of women's health and rare diseases, which supported it in all phases of development, up to the definition and approval of the final document .
As revealed by a survey carried out to analyze the impact of rare diseases on the lives of patients and caregivers, “42% of the women affected by rare diseases” interviewed declare that “the economic situation has changed following the diagnosis, with a worsening in 8 cases out of 10 and a consequent psychological impact in the majority of cases – states Giuseppe Arbia, director of Altems – The additional expenses that they have had to face are linked, in 77% of cases, to medical treatments, including related to travel to access therapies and checks (23%), while in 19% of cases to needs related to managing the home and family. It has also been seen that they lose an average of 45.46 days of work per year, corresponding to 3.78 days per month. As for the caregivers – continues Arbia – 65% reported that the diagnosis of their child's rare disease led to a worsening of the economic-financial situation with a worsening in 8 out of 10 cases with psychological repercussions in 78%. The additional expenses” are attributable “in 69% of cases to medical treatments, including travel to access treatments and check-ups (22%), and in 28% of cases are related to the management of the home and family. For them, on average, the days of work lost are 43.67 per year, 3.64 per month”.
In rare diseases “there is a female prevalence of 52.4%” which “is 1 million and 48 thousand – explains Guendalina Graffigna, full professor of consumer and health psychology at the Catholic University of the Sacred Heart of Cremona and director of the center of EngageMinds Hub Research which carried out the survey – In 90% of cases the patient's care load is absorbed by them. Suffice it to say that 1 million 400 thousand patients are of pediatric age, and 2 out of 5 today are under 18 years of age: those who take care of them are very often mothers, who in numerous cases experience a reduction in their work, play and relational activities , in a total identification with the disease and with the care task that follows. Unfortunately, very often, female figures are considered the most suitable to take care of a sick family member and suffer from pressures linked to the role of care, which leads them to give up many social activities”.
As the president of Uniamo, Annalisa Scopinaro, observes: “In Europe, diseases are considered rare when they affect 1 in 2,000 people and this makes us understand how those who suffer from them can feel alone. Yet the UN, with its resolution of 3 years ago, forcefully recalled the urgency of promoting and protecting the rights of these people. To do this, it is essential to have a thorough understanding of their problems and needs and, in this regard, we realized that there was a lack of precise data on the impact of rare pathologies (today between 7 and 8 thousand are known) on women's lives. . Today, thanks to Women in Rare we have this data and we bring it to the attention of public opinion and institutions. The objective – he adds – is to urge actions that can protect women caregivers in their daily care activity, which often leads them to leave their jobs, and patients with rare diseases regarding precision medicine and the prevention of other pathologies. It is necessary to help the former with a specific law that deals with caregiving, and the latter by offering assistance and advice.”
Referring to the results of the survey, “the majority of the women interviewed – comments Nicoletta Orthmann, medical-scientific director of the Onda Ets Foundation – told us that the pathology also has a negative influence on the perception of oneself and of one's femininity and of often feeling embarrassed due to the physical limitations it entails. The same happens with fertility, a sensitive issue for many of them. With this campaign we want to shine a spotlight on the condition of these women, to ask for interventions from institutions that focus mainly on the offer of psychological support, on the creation of specific guidelines and diagnostic paths and on the implementation of local health services with attention to the issue gender.”
In this regard, “like Alexion, AstraZeneca Rare Disease, a leading company in the development of therapies for rare diseases, we have decided to promote the Women in Rare project to help improve knowledge of relevant aspects in women's lives, such as the burden carried by patients or caregivers and the impact that the rare disease has on their lives – concludes Anna Chiara Rossi, VP & General Manager Italy of Alexion, AstraZeneca Rare Disease –. The privileged observatory from which we operate offers us the opportunity for an informed vision of the problems linked to these pathologies, which is why we feel the responsibility to act to encourage these people to be listened to and to give them a voice. With the implementation of the campaign and the distribution of the white paper, from which difficulties and needs emerge and from which it is possible to draw the tools for a reversal of direction, we hope to be able to kick off a process of change in favor of all women who deal with a rare disease every day.”
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