Meeting challenges through collaborationNigel Barker has led Cystic Fibrosis Western Australia (CFWA) for nearly a decade and is an active participant on the MissionBox Advisory Board. Here, MissionBox writer Anna Bliss talks with Nigel about his groundbreaking work with cystic fibrosis and how others who support the cause can start making a difference.
You've initiated several programs that have changed how adults and children who have cystic fibrosis are treated, with life-extending results. Could you tell us a bit about that?
It was discovered that children who have cystic fibrosis and went surfing often had better health outcomes than those who didn't surf. We funded some research and as a result found that it was the salt in the air that helped these kids clear mucus from their lungs. Inhalation of hypertonic saline (very salty water) through a nebulizer is now a standard treatment for cystic fibrosis around the world.
We also work as the community extension of the hospital's multidisciplinary team, providing home care services to children, young adults and families living with cystic fibrosis, as well as provide education through our very successful schools program.
In what other ways do you interact and collaborate with other nonprofits, NGOs and foundations?
Cystic Fibrosis Western Australia has a unique challenge that absolutely requires collaboration. Our goal is to deliver services to a very small number of people living across a geographic area nearly four times the size of Texas. It wasn't cost effective to train people and establish services in rural and remote areas, so we brought together like-minded organizations to design a training program that brought two allied health professionals from each of the regions to a central location for five days of intensive training across a range of related diseases.
What challenges do you face in your work?
The biggest challenge is finding the small molecules that can correct more than 2,000 mutations of the cystic fibrosis gene. To do that we need not only money but we need to attract and retain the best minds on the planet — beautiful minds with a passion for making the world a better place. The cost of bringing a drug to market is also a challenge. Pharmaceutical companies can spend billions of dollars bringing a drug to market. With rare diseases the market is small, so the cost recovery and return on investment must be disproportionately large.
What do you wish people understood about cystic fibrosis?
Children who have cystic fibrosis look healthy on the outside because the damage is on the inside. It's a genetic disease, and no, you can't catch it.
In the 1960s, average life expectancy for a child born with cystic fibrosis was just 5 years. Parents were told to take their children home and love them for the short period of time that they would have them. Today, thanks to a better understanding of the disease and improved early intervention and treatment, average life expectancy at birth is 37.5 years. It's still too young, but our vision of the future is lives unaffected by cystic fibrosis. By that, we mean that every child born with cystic fibrosis should be able to reach his or her full potential unencumbered by the disease.
The good news is that we're getting there. For the first time ever, this spring I was able to stand up in front of parents and talk of cystic fibrosis as a lifetime manageable disease rather than a sentence to a premature death. How cool is that!
What's the next frontier in the work you do?
In the next few years, we can reduce structural lung damage in children by 50 percent at age 5 by:
- Establishing and implementing new standards of care for children born with cystic fibrosis
- Inventing new tests to monitor lung disease to facilitate clinical management and clinical trials
- Identifying new treatments through repurposing of existing drugs
- Implementing personalized treatments based on screening patients' own bio-banked cells to test the effectiveness of available therapies
How can people who care about supporting those who have cystic fibrosis start making a difference?
Spread the word. We need money to keep young lungs healthy. Children who have cystic fibrosis are born with healthy lungs that can deteriorate rapidly without early intervention. Fund research that will alter the trajectory of the disease. We can and will add 20 years to average life expectancy at birth if we can maintain the current research.
What's the best advice anyone has ever given you?
Follow your dreams. Don't chase the dollar, but follow your dreams and the dollar will find you. So many people chase the dollar and end up trapped in jobs they hate but can't escape because they need the money to maintain their lifestyle. What a miserable existence!
What inspires you?
People inspire me. There is so much distressing news in the world today, but when I see a child performing an act of kindness I find it truly inspirational.
What are your hopes for the next generation?
My hopes for the next generation are that they will inherit a world free from conflict, disease and hatred. That they will look at their parents and grandparents and feel proud of the legacy we have left them. It's a big ask but it's not too late to make a difference.
Know another visionary leader or organization working for social good? Let us know! Email firstname.lastname@example.org.
Nigel Barker has led Cystic Fibrosis Western Australia (CFWA) for nearly a decade and is an active participant on the MissionBox Advisory Board. Formerly the CEO of the Western Australian Council of the Ageing and the Deputy Director of the Arthritis Foundation, Nigel is a devoted advocate for Australians facing health challenges. A lifelong community builder, Nigel was a founding member of the Middlesborough Museum Club in his native England at only 8 years old. In July 2016, on behalf of CFWA, he accepted the first-ever Charities Category Telstra Business Award for Western Australia.