Pharmaceutical company Roche has joined forces with a number of charities, celebrity Myleene Klass, and patients and families to launch a new campaign targeted at idiopathic pulmonary fibrosis (IPF).
The announcement follows a declaration by the European Parliament last week that urged Member States to improve the care of those living with the fatal lung disease.
The launch of the campaign, titled Fight IPF, was timed to coincide with IPF World Week (17–25 September), which aims to raise awareness of the disease, and ensure there is more information and support for people diagnosed with the disease and their loved ones.
Currently about 15,000 people in the UK live with IPF – a condition which leaves people struggling to breathe. Average life expectancy from time of diagnosis is around three years. Despite the devastating impact of the disease, there is limited awareness of IPF, which Roche has said must be addressed now.
In a powerful and emotionally-charged rendition of Rachel Platten’s hit ‘Fight Song’, the children and grandchildren of people with IPF have come together – accompanied by classically trained pianist and TV presenter Myleene Klass – to urge their parents and grandparents to continue to stand up to IPF by learning more about their disease so that they can make more informed decisions, enabling them to strive for their goals and fight for more tomorrows.
Klass said: “As a musician and a mother, I feel privileged to be part of this campaign which has touched the hearts of us all. Music has this amazing ability to lift the soul and makes you feel proud and celebratory for all the things you have. So I hope that through the power of music we can inspire people with IPF to embrace living in the moment and continue to live their lives the best way in which they can.”
The campaign aims to empower people living with IPF and their families to stand up to IPF. The video can be viewed at fightipf.co.uk – a new online hub designed to inform and empower patients diagnosed with IPF and their family members.
Action for Pulmonary Fibrosis (APF) and other patient organisations globally worked with Roche to support the participation of IPF patients and their families in the Fight IPF Choir - highlighting what living with IPF means.
Karen Hughes, Chair-Elect of APF said: “As the daughter of a formerly fit and healthy man who died a very tragic death from IPF, I know just how isolating and terrifying this disease is. I was lucky that my dad lasted 6 years as many patients survive just 1,000 days after diagnosis. Although more than 3,000 people die of IPF in the UK each year – as many of those that die from leukaemia – the disease has little profile and many patients feel they have been forgotten. There is a paucity of data in the NHS as our recent survey demonstrates. We believe that the NHS should introduce mandatory data collection to tackle this.
“The wonderful Fight IPF Choir gave just a few patients and families the chance to feel they were doing something to fight the disease; it empowered them and gave them a real sense of purpose. Everyone involved in APF has a personal or professional connection to the disease and we all work to make life better for patients and their families.”
In most cases, IPF is eventually fatal, due to respiratory failure. However, earlier diagnosis, patient support and information, and learning how to manage the condition can help symptoms as well as slow down the progression of the disease. This is why it is crucial that patients are able to have informed conversations with their clinicians.