To reclaim the unique identities and voices of patients with rare diseases. With this objective, the biopharmaceutical company Alexion has launched the Identity Diagnosis initiative, within the framework of Rare Disease Day, which is commemorated on February 29. Through this campaign, Alexion advocates for patients to be recognized for who they truly are, beyond their illnesses. Many of the three million people living with a rare disease in Spain often feel defined by their condition.
Responding to this reality has been the objective for which Alexion has launched this initiative, promoted with the support of the Spanish Federation of Rare Diseases (FEDER). Within this campaign, a group of patients with rare diseases has obtained their first identity diagnosis, written in the form of a poem by Noah Higón. In addition to being a poet and activist, she is a patient with seven rare diseases, who has collaborated in this Alexion campaign. The company was acquired in 2021 by AstraZeneca, which has opened an R&D hub in Barcelona that will move to the Estel Building in 2025, to advance research in multiple health fields, with rare diseases in its sights.
These diseases entail a set of unmet needs that can range from diagnosis to access to treatment. The head of the Hepatology and Pediatric Liver Transplant Unit at Vall d'Hebron Hospital, Jesús Quintero, emphasizes that "patients go through a tremendously long and uncertain journey" due to these difficulties, and that campaigns like Alexion's give visibility to these diseases, personifying them in specific cases and patients beyond the concept. Awareness is crucial not only for society, but also within the medical community itself: "Even if a patient has symptoms that do not fit for a doctor, they must continue searching until they can put a name to it" and not let it go due to lack of answers. In Quintero's case, he advocates for investigating and delving until finding the diagnosis: "Sometimes, the first time I know about a disease is when I diagnose it," said the doctor, who has participated in the campaign.
The five patients who have been part of the initiative received this poetic identity diagnosis from their doctor during a consultation. In it, in addition to maintaining the usual conversation about the evolution of their disease, the patients reviewed their personal interests and concerns, which had been previously discussed with family members and close friends. The respective poems written by Noah Higón highlight their traits and desires, to "show, through writing, the unique identities of the five protagonists of this initiative," according to the poet. "Being able to express their ambitions, struggles, and fears has been a beautiful challenge that I have faced with great enthusiasm," Higón concluded.
The unmet needs of patients with rare diseases include shortening diagnosis time, promoting research, and facilitating equitable access to treatmentsAfter this experience of the patients, who received their unique diagnosis with surprise and emotion (as seen in the video accompanying this article), Alexion's initiative opens up to all citizens the possibility of obtaining an identity diagnosis that gathers their hobbies and concerns in a poem, focusing on the person and not on conditions such as an illness. Using Artificial Intelligence tools, it invites citizens to participate in this proposal to give visibility to rare diseases and to give a voice to patients.
Through a chatbot, participants must answer a series of seven questions that lead them to reflect on the moments that have marked their lives, their long-term goals, their qualities, and their motivations. Based on these, the chatbot generates its identity diagnosis in the form of a personalized poem, which can be shared on social media by tagging it with the text my identity is not rare. The test to obtain this particular diagnosis can be done on the website Tres Millones Ya No es Raro, whose name is a declaration of intent to combat stigmas surrounding low-prevalence diseases.
All with the aim of asserting the unique identities of patients with these pathologies, which affect three million people in Spain. In total, there are about 7,000 minority diseases, most of which do not have specific treatment. In addition, patients take an average of four years to obtain an adequate diagnosis, and some patients die without knowing their condition. In this sense, Alexion's initiative has a second objective: to highlight the importance of more effectively addressing their unmet needs, which include shortening diagnosis time, fostering education and awareness about these diseases, increasing research, and facilitating equitable access to available treatments.
Alexion's goal is to accompany patients with rare diseases and add their voices to the search for solutions to their unmet needs"At Alexion, we believe it is fundamental to give patients with rare diseases the opportunity to define themselves by who they are beyond their illness, so that they can express their needs and develop their lives fully," proclaimed the director of the pharmaceutical company Alexion in Spain and Portugal, Leticia Beleta. The Boston biopharmaceutical company, which established its subsidiary for Spain and Portugal in Barcelona 15 years ago, is committed to society seeing patients with these diseases from a new perspective that listens to and understands them. "Our goal is to accompany patients with rare diseases and add their voices to the search for solutions to their unmet needs," added the Alexion executive.
Thus, Identity Diagnosis "highlights the importance of addressing the unmet needs of patients so that they can fully develop as individuals," added the president of Feder, Juan Carrión, about the initiative. In it, having a group of friends, traveling, and therapies with horses are some of the interests and desires revealed by its protagonists. They do so focused on themselves beyond their illness, through poems that firmly warn: "I tell this life-changing illness that I am the one who weaves my days."
ES/NP/0307 February 2024