Did you know?
By Tom Valenta
For people living with CF and their families, the progress in medications and management over the past four decades has been remarkable. Some of the significant breakthroughs have been initiated in Australia.
In the late 1990s, several young Sydney surfers living with CF told their doctors that they felt they could breathe more easily after spending time in the surf. Were the benefits largely psychological? Everybody’s mental health improves when they are in a healthy environment doing what they enjoy.
The information from the surfers did soon prompt medical research – and the outcomes were to be very positive. In 2000, the Australian Cystic Fibrosis Research Trust (ACFRT) agreed to fund an initial “Proof of concept” study into the benefit of hypertonic saline solution. While hypertonic saline solution had been around for some years, it was not known to be beneficial for CF.
A team led by Professor Peter T P Bye, head of Cystic Fibrosis Service, Royal Prince Alfred Hospital, and an academic at Sydney University, did the initial research. Also on the team was Mark R. Elkins, a senior research physiotherapist at the Royal Prince Alfred Hospital and a Sydney University academic. With further funding obtained from the US Cystic Fibrosis Foundation and the National Health and Medical Research Council of Australia, the hypertonic saline study was conducted between September 2000 and November 2003. In all 164 adults and children with CF from 16 adult and paediatric hospitals around Australia participated in the trial – the largest clinical trial for CF ever conducted in Australia.
The research proved that this simple, low-cost treatment was highly effective as a mucous thinning agent. Salt attracted water into the airways, which thinned the mucus, making it easier to cough out, and this was to provide better quality of life to virtually all those with CF. As a result of the research, hypertonic saline solution was soon adopted globally.
In 2014, the work of Professor Bye and Mark Elkins was recognised when they received the prestigious Richard C. Talamo Distinguished Clinical Achievement Award at the North American Cystic Fibrosis Conference. Two American researchers who had worked on this research, William D. Bennett, professor of medicine at the University of North Carolina and Scott H. Donaldson, associate professor at the University of North Carolina also received the award.
Presenting the awards, Christopher M. Penland, vice president of research at the CF Foundation said: “The work of these four dedicated individuals has led to a relatively inexpensive approach to airway clearance for all people with CF, at all ages and stages of the disease. Their research has changed the way we treat cystic fibrosis and helped improve the quality of life for all with the disease.”
In 2019, Professor Bye was awarded a Member of the Order of Australia (AM) “For significant service to medicine, particularly to cystic fibrosis, and to medical education. He has had a lengthy association with both the University of Sydney and Royal Prince Alfred Hospital.”
Perhaps it is time to acknowledge the contribution of the anonymous surfers whose feedback to the medical professionals led to better quality of life for people with CF. Doctor-patient confidentiality presumably meant that their names were never revealed in any of the published material.
* Advancements in treatments have, over the years, undoubtedly led to better outcomes for those living with cystic fibrosis. However, while we recognise these advancements, we also acknowledge that there are still people living with CF who cannot access these treatments and more work is yet to be done.
About Tom Valenta
A former journalist and public relations consultant, Tom Valenta is an author and advocate. In all, he has written thirteen books of non-fiction covering diverse topics including dementia, cystic fibrosis and alcohol and other drugs.
His work in the dementia and cystic fibrosis fields was inspired by personal experiences – he lost his wife, Marie, to Alzheimer’s disease in 2009 and two of his six grandchildren live with cystic fibrosis. In addition to the books, he has written articles, scripts and has advocated in these areas.
Tom’s book on cystic fibrosis, “Every precious breath: Inspirational stories about living with cystic fibrosis,” was published in 2011. For his work, Tom was awarded an Order of Australia Medal (OAM) on Australia Day, 2019.
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
