“Our commitment to the white paper derives partly from our mission” which “for over 30 years has been to transform the lives of people living with the rare disease and that of their loved ones who try to provide support to their families . The project fits precisely into this perspective.” There are 2 ways in which “we try to carry out our mission: by focusing on the research and development part, therefore trying to make transformative drugs available to people, which can really have an impact on the natural history of the pathology”, and by listening “what are the needs of the rare disease community, primarily that of patients, to try to understand, beyond the drug, what needs still need to be filled”. Thus on Adnkronos Anna Chiara Rossi, VP & General Manager Italy of Alexion, AstraZeneca Rare Disease, commenting today in the Senate on the presentation of 'Women and rare diseases: impact on life and expectations for the future', during the final event of the 'Women in rare' campaign promoted by the pharmaceutical company.
“After years of listening to the community – continues Rossi – we realized that the impact of rare diseases on women's lives was truly dramatic and devastating. 90% of caregivers, i.e. those who take care of rare patients, in Italy today are women, and many of the rare pathologies have a greater impact on women. With this research we wanted to try to transform and make clear what were many stories, anecdotal examples, into solid data that really gave an idea of what the impact is, the difficulties that women involved in this field face every day they must overcome and try to enhance them also from a pharmaco-economic and economic point of view to actually understand what the impact could be”.
There are many requests that emerge from the white paper. “First of all, an emotional and emotional aspect emerges, the need for help, for psychological support”. Women need to “feel immediately understood by those who take care of them – underlines Rossi – and that the first symptoms are really taken into serious consideration, which, sometimes, we have found, does not happen. The first symptoms of the disease are mistaken for stress, tiredness and this often leads to a delay in diagnosis.” Furthermore, “the possibility of accessing effective treatments in the shortest possible time” is requested. As a caregiver it is important “to be able to have support in caring for the patient, often the son or father”, but also “greater support” from a work point of view “because, very often, both patients and caregivers have to leave him” . Finally, the white paper, in addition to drawing attention “to the desire for motherhood, highlights the need for the caregiver” not to completely cancel herself in order to “take care of the sick person. And to be able to do it without guilt and without an economic impact that can be devastating” she concludes.
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