The value of time for people with idiopathic pulmonary fibrosis
Over 200,000 people across Europe and the United States have idiopathic pulmonary fibrosis (IPF), an incurable lung disease more deadly than most cancers. The average life expectancy after diagnosis is two to five years. Although the cause of IPF is unknown (which is what “idiopathic” means), evidence suggests that genetic factors can play a leading role.
Between 13-18 May, Roche will be at the American Thoracic Society Conference, which brings together nearly 14,000 doctors and scientists to exchange and learn about recent research and clinical advances.
Ahead of the ATS, we spoke to Liam Galvin, Secretary of the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF), about some of the challenges IPF patients and their carers face.
Liam has personally experienced the shocking impact of IPF. After losing his wife and her two siblings to the disease, he has been actively engaged in raising awareness and creating better treatment and care environments for patients. His work with the EU-IPFF involves encouraging European countries to follow the IPF Patient Charter. The charter makes recommendations to healthcare system decision makers on actions needed to improve IPF patients’ quality of life, as well as to support development of long-term treatments and – ultimately – a cure.
Struggling with diagnosis
Not knowing what to do upon diagnosis is a fundamental issue for IPF patients. Liam notes that with insufficient information and support available, they can be easily overwhelmed.
“Often patients feel relieved when they hear their diagnosis is not cancer or some other disease they perceive as more serious. This relief does not last long and what follows is a strong sense of uncertainty. Because IPF is a rare and poorly understood disease, patients struggle with this diagnosis – they do not know what they are dealing with. Many patients ask for a prognosis and what they can do to prolong their life.”
It is important for physicians to inform patients about what to expect and to provide suitable treatment options.
With the low life expectancy associated with IPF, time is of critical value to patients. Liam notes that one of the biggest hurdles is the delay in getting an accurate diagnosis and treatment. “It can take more than a year between first seeing a family doctor and the referral to a specialist for a correct diagnosis,” Liam says.
”Even after the diagnosis, patients often experience treatment delays due to logistical issues or a lack of resources.” Liam also explains that there are often few or no specialty centres in the patient’s vicinity. Low mobility and, for some, lack of personal resources make travel nearly impossible, causing further treatment postponement.
Hope for people with IPF
Despite the challenges ahead, Liam is optimistic that people with IPF will get better access to treatments as people become more aware about the disease and the treatment options that are available to them.
Things have moved on a lot in recent years. Up until three years ago there was no treatment and now with approved options available, collaboration between countries for better care, and increasingly informed healthcare practitioners, there are more options to maintain quality of life in these patients for as long as possible.
At Roche, we believe that ensuring better quality of life for patients, and empowering patients and caregivers, is an essential part of our work. We therefore endorse the patient-driven IPF Patient Charter and are committed to addressing the unmet needs of people with IPF.