Rodrigo Reis
General Manager, UCB Canada Inc.
Closing the care gaps for patients with complex diseases requires more public and clinical education, faster referral pathways, and patient-centered innovations.
Patients with complex diseases need a proper and timely diagnosis. But that’s not always easy to come by. Lack of clinician and public education on conditions such as Myasthenia Gravis (MG), Axial Spondyloarthritis (axSpA), and Hidradenitis Suppurativa (HS) often result in misunderstood symptoms and delayed diagnosis. Further, a lack of access to family doctors and specialists like dermatologists and neurologists can lead to longer wait times for patients.
“This can mean losing a critical window of opportunity to treat the disease and slow its progression,” says Rodrigo Reis, General Manager at UCB Canada Inc., a pharmaceutical organization specializing in developing therapies for neurological and autoimmune conditions.
The negative consequences of misunderstood symptoms and delayed diagnosis are not restricted to the individual patient. “It’s very costly to the healthcare system when you have a patient spending several years consulting with numerous professionals and undergoing various tests with no conclusive results” says Reis. “There are also broader costs to society and the economy if patients’ symptoms progress to the point that they become unable to work,” he says.
Patient perspective critical to identifying unmet needs
Improving the patient journey requires consultation with multiple stakeholders. “Healthcare providers are an obvious group since they are the experts and have that technical perspective, but it’s equally important to understand the disease through the patient’s lens,” he says.
An important tool for obtaining patient perspectives is patient advocacy groups’ data. “These patient-reported data and insights are extremely useful not only to the pharmaceutical industry and healthcare system, but also to inform Canada’s Drug Agency which is responsible for managing the Health Technology Assessment (HTA) for new treatments,” says Reis.
The role of innovative organizations and collaboration with public research institutes
Innovative organizations can play a role in developing treatments, technologies, and patient-driven solutions. One way is through collaboration with public research institutes, something that UCB is invested in. “Our FASTRAX program, for example, is part of a global initiative that aims to reduce time to diagnosis for people with axSpA,” says Reis. Through FASTRAX, UCB is piloting an interdisciplinary model to streamline the referral pathways and accelerate the assessment process for these patients. “The feedback from rheumatologists has been very positive so far, and we’ll be able to replicate this model in the future and hope to incorporate it into the public healthcare systems to ensure better care for these specific patients,” says Reis.
Another way organizations can be part of the solution is by taking a patient-centred approach. “This is the approach that we take at UCB. We involve patients in every step of our drug development process to ensure that all decision making reflects their needs,” says Reis.
A patient-focused approach has the potential to transform how complex diseases are diagnosed and treated.
Learn more about closing critical care gaps for people living with complex diseases by visiting ucbcanada.com.
