In the early months of 2020, out of 536 Italian patients with blood cancers affected by the coronavirus, almost 200 died. A death rate for Covid more than double that of the general population. And, above all, 41.3 times greater than that observed in cancer patients before the pandemic. Numbers that make it clear what the term “fragile patients” so used in recent months means. “Blame” for tumors that involve the immune system, making patients much more vulnerable to infections, including coronavirus. The awareness of these diseases – leukemia, lymphoma and myeloma – is dedicated September, the Blood CancerMonth
These cancers affect about 33,000 people each year. The pandemic has exposed even more the fragility of these patients and the healthcare system. For this reason – this year even more – raising awareness does not only mean making known diseases, the importance of early diagnosis, the therapies that are there and are effective, but also bringing to the eyes of institutions, public opinion and sometimes the needs of the sick themselves. Faced with the inconveniences and new needs that emerged with the pandemic, AIL – the Italian Association against Leukemia, Lymphomas and Myeloma – did not stand by, committing even more to provide support tools and services.
New needs
AIL, with the help of the Patient Groups of the Association, has promoted a survey and has mapped the new needs and discomforts of patients and caregivers, in order to be able to give targeted responses to their needs and never leave them alone in times of difficulty. It emerged that during the pandemic the majority of patients with blood cancer had serious repercussions both on the work and health spheres: over 58% had to stop working, while 4 out of 10 people saw a reprogramming of diagnostic tests and administration of therapies, and as much as 66.3% had difficulty in relating to their haematologist. Furthermore, many complained about the lack of clear information both on the behaviors to be adopted in the emergency period in relation to the disease (64%) and on the facilities provided by the institutions (60.5%). One in 2 people interviewed reiterated the need for psychological support and the fundamental role of home care during the most uncertain months of the pandemic.
The support of AIL
In short, the results of the survey were a sort of call to arms. Thus, over the past year and a half, AIL has set up a series of additional tools and services to meet the needs of cancer patients.
Thanks to the support of the 82 territorial sections, AIL has managed to strengthen its home care network, transferring many services of the hematological day hospitals and clinics to the patient’s home, the delivery of drugs and basic necessities, with the aim to reduce hospital admissions and, especially in the acute phase of the pandemic, unnecessary exits. The support to the Hematology departments did not fail through the supply of materials and financial support where it was required.
Considerable effort was also made to strengthen telephone contacts for information and support, creating a free counseling service, with the aim of alleviating anxieties and fears. As of March 2020 the AIL toll-free number (800 22 65 24) has expanded its availability from being active once a week (before the pandemic) to receiving calls from Monday to Friday from 3 to 5 pm, with days dedicated to the answers of haematologists (Monday, Thursday and Friday), legal experts for issues related to subsidies and income support (Tuesday), psychologists (Wednesday). At the end of the year there were 855 free telephone consultations on the toll-free number, 280 those received through the AIL social counter.
The therapeutic education activity did not stop with the organization of seminars for patients and doctors, a project that has been active since 2005 and which in 2020 counted 16 events. Objectives: to disseminate greater knowledge of the pathologies, update on the latest available therapies, encourage direct dialogue with specialists and help to face the disease path with greater awareness, as well as offering the possibility to share one’s experience with others and alleviate the sense of loneliness. The next seminar, dedicated to chronic myeloid leukemia, is scheduled for 25 September.
A future beyond the disease
AIL has also tried to fill the information gaps by creating information and awareness campaigns and updating the contents of its pages to respond to the most frequent doubts of patients and caregivers. In 2021 in particular, in conjunction with Blood Cancer Month, AIL wanted to dedicate a particular focus on chronic blood cancers in particular chronic myeloid leukemia, chronic lymphatic leukemia and multiple myeloma and on the needs of those who live with it every day. Thanks to project A future beyond the disease, addressing conicity in leukemia and myeloma. its ail.it come on pazienti.ail.it Multimedia spaces dedicated to each pathology have been created to provide useful information to patients and caregivers and to anyone who wants to know more.
“One of the objectives of the AIL mission is to respond to the concerns, questions, the need for reassurance and discussion of haematological patients and their families, who need to receive immediate and certain information on the management of diseases”, he declared Sergio Amadori, AIL National President. “The numerous phone calls and requests for online consultations that come to us every year testify once again our commitment and our will to never leave patients alone in a moment of their life in which uncertainties, anxieties and fears are at risk. to take over “.
.