Her initial runs were short and a struggle, but Raewyn found she liked running, and as she got fitter she ran further.
“Two years ago I did a quarter-marathon, which was my first competitive run.”
Wayne and his sons know what cystic fibrosis is and can do, so Raewyn is running the half-marathon to raise awareness, not just of cystic fibrosis, but of a “wonder drug” called Trikafta.
“We got in touch with the head office of Cystic Fibrosis New Zealand (CFNZ) and we’ve been working closely with them.
“My big push for this one is the knowledge and awareness of what they nearly had, and then it was ripped away from them.”
Trikafta was on its way to being funded by Pharmac this year ... and then it wasn’t.
Even though, according to CFNZ, “Pharmac acknowledged the major benefits that Trikafta offers, not just to the health system but an extension to life expectancy and quality of life, estimating that Trikafta would provide benefits equivalent to 27 more years at full health when compared to current treatments.”
The problem seems to be funding, as Trikafta is very expensive. In answer to being turned down by Pharmac, CFNZ has put a Trikafta advocacy kit on line for those who want to fight for its funding. They’ve called the campaign the #27MoreYears movement.
The toolkit is available at https://www.cfnz.org.nz/assets/Advocacy-Toolkit/6d4b3d20fe/Trikafta-Advocacy-FULL-Toolkit-October-Email-2022.pdf
“Trikafta is funded in more than 30 countries around the world, including Australia,” says Raewyn. “Cystic fibrosis is a terminal illness with a life expectancy of anywhere between 35 to 45 years old, and the majority of them are diagnosed as young children.”
To add something like 27 years of good health with Trikafta would make a huge difference. According to CFNZ, only half of those diagnosed in New Zealand reach 31 years of age.
CFNZ says, “CF causes the body to produce thick, sticky mucus which damages the lungs, digestive system, liver and other parts of the body. People with CF endure a life-long, demanding and time-consuming daily regime of lung clearance and medication together with regular medical check-ups and, over time, increasingly frequent hospital admissions. Only a very small number currently have access to CF modulator therapies that address the underlying cause of the condition. The remainder only have access to treatments that address the symptoms of CF.”
Raewyn and Wayne are passionate about assisting CFNZ with awareness and funds, hence the half-marathon on December 11.
“For someone who wants access to Trikafta ... it is $300,000 a year,” says Raewyn. She says we’re either losing people to the illness itself, or we’re losing entire families who have to pack up and leave for countries where Trikafta is funded.
She says it would cost less to fund the drug than it does at the moment to take care of those with cystic fibrosis.
“In the last three months I’ve run nearly 300 kilometres in training for this. The longest run to date that I’ve done is 17.9km,” she says. That was about three weeks ago. “It took me just over two hours to do and that was around town.
“When I’m running, what’s really important is your breathing. It’s super-important to be able to get your heart rate and your breathing on the same page. For me, being able to run and breathe ... that’s something I shouldn’t take for granted.”
Raewyn is 33. A few years ago she could not have done this, but her new lifestyle and her work gives her a new perspective on health.
“Mayhem Supplements, we founded, I suppose you could say, out of the first Covid lockdown,” says Raewyn.
“Obviously Covid hit everybody like a truck, we were all locked down, and between my husband, his sons and myself, our online supplements bill went up pretty high ... and we thought, wouldn’t it be great if Whanganui had their own supplements store?”
“We thought this is something we could do,” says Wayne. “And this is something Whanganui needs.”
This is something they could work on to help out people with a need for help and fitness and the products they require for that.
“Whanganui has come a long way in the last few years with health and fitness,” says Wayne, “With the new City Fitness gym and we’ve just helped Premier Fitness gym open two weeks ago.”
Premier Fitness is right next to Her Fitness in Ingestre St. It’s a strength focus gym and Raewyn and Wayne help manage it.
“We don’t just do supplements, we give advice based on our own experiences,” says Raewyn.
They also sell Mayhem branded clothing and accessories and a range of honey.
“My own experience comes down to not only nutrition, but how to change your lifestyle and make healthier options. Health is wealth: that’s what we promote, and that’s how our supplements business came about.”
Next door to Mayhem Supplements they opened Mayhem Cuts barbershop on October 9, with two chairs and two barbers.
To help Raewyn assist CFNZ and raise awareness about Trikafta, go to the Mayhem Supplements Facebook page to find all the details.
On December 11, be there to cheer her on in the 2022 Pak’nSave Whanganui 3 Bridges Marathon. It’s the longest and most important race she’s ever run.
She’s running and raising awareness and funds in loving memory of Teri-Jane Titter.
