2023-09-12 10:52:52
by Health Editorial Staff
An understandable text for patients and family members to learn about CAR-Ts, innovative and complex therapies that have improved the treatment of various haematological neoplasms; from what they are to what they are used for, with a clear and usable glossary to support each chapter
What are CAR-Ts? How are they produced? Are these therapies safe? Against which diseases are they indicated? Where are CAR-T treatments performed? Are they available in Italy? And what is the future of these advanced therapies? These are some of the questions answered by the CAR-T project: a gene therapy for tumors, an instruction manual within everyone’s reach promoted by La Lampada di Aladino ETS, published by RareLab srl and created thanks to the funding of the Community Award, an annual call for applications Gilead Sciences aimed at patient associations throughout Italy. A manual that arises from the responsibility to fill the needs of patients who face the experience of a blood tumor, such as leukemia and lymphoma and which are constantly increasing.
Patients’ needs
The needs of patients were photographed by the CAR-T survey: Patient Journey and patients’ experiences, carried out by Elma Research and La Lampada di Aladino ETS: direct and empathetic relationships with the doctor or with the reference team to give a face to the system; maximum simplification of bureaucratic processes; psychological support to deal with illness and failure; listening by clinicians, especially in cases of relapses and better preparation of doctors on advanced therapies. Needs and requirements that are still open and which, in critical cases, reveal the feeling of not being adequately guided, of not having the right access opportunities and the knowledge to make informed choices.
Guide downloadable online
The manual that we have created was born precisely from the desire to satisfy that need for information which is not an end in itself, but which improves the doctor-patient relationship and becomes an integral part of the treatment path – explains Silvia Della Torre, president of the Scientific Committee of La Aladdin’s lamp ETS -. possible consult it and download it in pdf format online. The objectives pursued by the project, within the activities promoted by the association, can be summarized in three key themes: optimizing dissemination and availability of information on CAR-T for patients and caregivers; increase training to improve doctors and healthcare workers’ knowledge of therapies; enhance communication (and collaboration) between the various treatment centers and between doctor and patient.
Innovative and complex therapies
CAR-T therapies represent a revolution for the treatment of oncohaematological diseases, but can be difficult for patients and their families to understand – comments Roberto Cairoli, associate professor of Hematology at the University of Milan-Bicocca and director of Hematology at the department of Hematology, Oncology and Molecular Medicine Niguarda Cancer -. We are no longer talking about drugs in the classic sense, but about complex therapies for which there are specific eligibility criteria. This means that they are not suitable for all patients and this concept must be well explained and understood. On the other hand, it is also important to make people understand the enormous potential that CAR-Ts represent for those patients who meet the criteria and therefore can benefit from them: for them, treatment prospects are opening up that were previously precluded – adds Caroli, member of the Scientific Committee Aladdin’s Lamp ETS -. The communication of all this is a challenge that we must and want to accept.
Understandable language
The booklet goes in the direction of providing an answer to the need to communicate with patients through an understandable language, guiding them (together with families and caregivers) towards a greater awareness of the new frontiers opened by CAR-T, the therapies that have revolutionized the panorama of oncohematology. The real innovation – underlines Davide Petruzzelli, president of La Lampada di Aladino ETS – lies in the overall care of the person. Irrefutable scientific innovation: we are witnessing an incontrovertible change of scenario, thanks to unstoppable scientific research. But the issue of global care remains, to be implemented thanks to supportive welfare and giving greater value to information, training and communication, to make the patient able to participate in the treatment process.
September 12, 2023 (modified September 12, 2023 | 10:52 am)
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