A Sensory Experience to Understand the Disease Through sensory stimuli, narratives, and dynamics, participants experienced the obstacles faced by people with multiple myeloma: the initial ignorance of symptoms, diagnostic difficulties, the search for appropriate treatments, and the process of adapting to the disease in daily life.
The exercise was led by Unidos… Asociación Pro Trasplante de Médula Ósea Francisco Casares Cortina, an organization that promotes social awareness and support for patients with hematological diseases. The session was part of the activities organized by Senator Emmanuel Reyes Carmona, president of the Economy Commission.
Raising Awareness to Improve Public Policy During the event, Paulina Rosales, general director of Unidos… Pro Trasplante de Médula Ósea, explained that the goal of Sensorama is to allow decision-makers to understand the disease from a human perspective. She noted that the experience seeks to put decision-makers in the patients' shoes, in order to generate greater empathy and promote actions that benefit people living with this type of hematological cancer.
According to Rosales, understanding the disease from this perspective helps to link public policies with the human dimension of those facing it, which can translate into decisions that favor patients and their families.
Multiple Myeloma and Its Impact on Women The activity also allowed for reflection on the relevance of multiple myeloma in the context of women's health. According to Globocan estimates for 2022, 2,346 new cases of multiple myeloma were registered in Mexico, of which 1,054 corresponded to women, representing 44.9% of the total.
The association's director highlighted that this cancer not only affects those who suffer from it but also their families and the health system as a whole. Therefore, she indicated that it is necessary to promote public policies that guarantee equitable access to the different available treatment options.
Over Two Decades Promoting Awareness The sensory experience is part of an awareness strategy that the association has developed for over twenty years to highlight the challenges faced by patients with hematological diseases. One of the recent advances of this initiative occurred in 2024, when Unidos… Pro Trasplante de Médula Ósea managed to have September 5th officially recognized as the Day of the Fight Against Multiple Myeloma.
This institutional designation seeks to strengthen the visibility of the disease and promote public actions around three main axes: early detection to avoid late diagnoses; equitable access to quality treatments, regardless of socioeconomic status or geographical location; and comprehensive patient support, including mental health, rehabilitation, and family accompaniment.
At the close of the activity, Rosales highlighted that the direct approach with the legislators represents an opportunity to strengthen dialogue with those who make decisions in health matters. She stated that knowledge and awareness of these conditions can contribute to building a more complete and equitable vision of access to timely diagnoses and early treatments, factors that can transform the prognosis and quality of life of people living with multiple myeloma.
