Australian lung fibrosis patient on long kayak to call for better treatments

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A 65-year-old Brisbane man with Idiopathic Pulmonary Fibrosis (IPF) will kayak 2,200 kilometres from NSW to South Australia over the next two months to raise awareness for the debilitating lung disease characterised by difficulty breathing.

Bill Van Nierop has called his endeavour the ‘Long Kayak for Lungs’, and it builds on his efforts last year when he walked 697 kilometres from Narromine to Forbes in NSW and raised more than $100,000 for Lung Foundation Australia.

Mr Van Nierop will kick off the Long Kayak for Lungs on 10 August and he aims to complete it by 20 September, coinciding with global Pulmonary Fibrosis Awareness Month (September). Donate here to support Bill’s endeavour and the valuable work of Lung Foundation Australia.

“I want to get Australia having a conversation about IPF,” said Mr Van Nierop, who was diagnosed with the condition in 2015 with no noticeable symptoms except a sense of breathlessness that he had put down to age.

“There is a real stigma around IPF – no one is talking about it – and a lack of awareness among clinicians. Treatment options are severely poor and available funds for research are difficult to access, all of which make IPF difficult to diagnose and to live with as a patient.”

IPF, or lung fibrosis, is a life-limiting disease that causes irreversible scarring of lung tissue. The cause of IPF is unknown, and the scarring continues to worsen over time, making it difficult to breathe.

Experts estimate that 1,250 people are diagnosed with IPF each year in Australia. Currently, there are just two treatments approved for IPF – Pirfenidone (Esbriet®) and Nintedanib (Ofev®). These drugs are not curative only slowing disease progression, and patients tend to discontinue use due to severe side effects. Even with treatment, the prognosis of IPF is very poor, with a median survival of only three to five years following diagnosis.

AdAlta is developing its lead i-body candidate AD-214 to treat IPF.

AdAlta CEO Sam Cobb explained, “AD-214 is a novel treatment because, unlike the existing treatments, it selectively targets and binds to a protein thought to contribute to the progression of lung fibrosis, called CXCR4. Our data clearly demonstrate the therapeutic potential of the i-body in the case of IPF, and its promise as a future treatment option.

“We are immensely inspired and encouraged by Bill’s efforts, and we wish him the best of luck!”

AdAlta is progressing AD-214 to the clinic as quickly as possible, and is currently completing manufacturing of the product in preparation for additional safety studies, after which the drug will be trialled in human studies. AdAlta will complete its first human studies in healthy volunteers in Australia in the first quarter of 2020.

Learn more about Bill’s journey at the Long Kayak For Lungs website: