Imagine not being able to carry out the simplest tasks like brushing your teeth, putting on clothes or simply walking because you are constantly short of breath; feeling so breathless that climbing a few stairs feels like an uphill battle; constantly thinking about every breath you take or constantly worrying about catching a common cold or flu because it could be life-threatening?

I often reflect on this daily struggle lived by people with idiopathic pulmonary fibrosis (IPF) – a rare, chronic and progressive disease. I try to consider how I can make a meaningful difference in both the way this disease is treated and how people living with IPF are supported day-to-day. For me, being patient-centric isn’t enough, I see this as a holistic partnership with IPF patients, right from the early stages of research through to new innovations being made available to them.

IPF is the most common form of pulmonary fibrosis and is a progressive, life-threatening, incurable condition that causes scarring on the lungs. It affects 100,000 Europeans and it has been estimated that approximately 40,000 new cased will be diagnosed each year – a similar number to more well-known conditions like leukaemia and ovarian cancer – yet too often the symptoms are missed and people don’t get the care and support they need.

In addition to work to understand the mechanisms of the disease and identify how to influence its progression, it is important to partner with the people who understand what it is like to have IPF better than anyone – patients living with the condition.

Everyone involved needs to understand what people living with IPF are truly concerned about, and what impacts them the most.

Galapagos recently partnered with the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) and conducted a survey of 273 patients from across Europe to better understand the path to IPF diagnosis, how it is treated and the challenges it brings. An important insight from the survey, which demonstrates how much still needs to be done to educate about this disease, is the result that shows while 30% of patients received a diagnosis within three months, 40% had to wait over a year. The average life expectancy post diagnosis without treatment, is just two-five years, which brings the urgency of gaining an early and correct diagnosis sharply into focus.

While the survey found that 77% of patients saw a specialist within three months of being referred, this is still extremely slow compared to cancer patients in the UK for example, who see a specialist within 2 weeks of their referral. The remaining 37% who were not initially referred to a specialist, had no action taken at all, or had been misdiagnosed, wasting precious time to provide life extending care and support. A slow and uncertain journey to diagnosis places a significant psychological burden on people, who are anxious to know their diagnosis and more importantly delays the much-needed treatment that could prolong many lives.

Today, there is an urgent need to address these challenges, to improve the rate and speed of diagnosis, and also the improve the support and information available to patients once they receive a diagnosis.

I believe it is important for anyone working on new and pioneering treatments for IPF, to do this in collaboration with the IPF community to ensure we can make a meaningful difference. I am proud to be part of a partnership with the EU-IPFF at this year’s European Respiratory Congress (ERS) to draw attention to the experiences, hopes and aspirations of people living with IPF. Together, we are delivering the first ever, patient organisation-led virtual symposium where the EU-IPFF will be discussing these very important topics to explore the physical, emotional, and social impact of IPF, identify key unmet needs and look at ways to educate general practitioners on the signs and symptoms of IPF. The EU-IPFF will also be presenting a benchmarking report looking at access to care across Europe, in addition to sharing results of a pilot programme to educate GPs.

As Steve Jones, president of the EU-IPFF, rightly said, ”If you have just two-to five years to live you should not have to wait over a year to be diagnosed, this is unacceptable. There is an urgent need to speed up the diagnostic pathway and provide patients with more information at all stages of their journey to improve their quality of life.”

So how is what we do going to help people with IPF? This question gives my work purpose every day and fuels my curiosity to do research. My aspiration is to help people living with IPF lead longer, healthier and more fulfilling lives. This work with the EU-IPFF will make sure we can all keep focused on what matters most to these patients.

Walid Abi-Saab is chief medical officer of Galapagos