Gardiner scholar is a Cystic Fibrosis pioneer: ‘We’re making science right now’
By ROGER MOONEY
Picture the Grand Tetons National Park in Wyoming with its majestic peaks and breathtaking vistas. Look closely and you might spot a moose under a bridge or a heard of bison off in the distance. Memories to last a lifetime, for sure.
Then 15, Faith Dunlap was there with her family in July 2018, ready to experience all the park has to offer.
Her favorite moment? Well, they did see a moose, and it was under a bridge. But that is hardly the biggest takeaway.
The lasting memory will be the phone call that reached the Dunlaps while they were in one of the park’s visitor centers. It was there where Faith learned she was accepted into a clinical trial for Cystic Fibrosis that had been approved earlier that year by the U.S. Food and Drug Administration (FDA).
If successful, the treatment would be a life-changer if not a lifesaver for those battling the disease that attacks the body’s organs, namely the lungs.
“It was,” Faith’s mom Deana said, “a great day.”
And while the Dunlaps cut short the vacation and hustled home to Melbourne, Florida, that memorable day with the Grand Tetons as the backdrop was followed by more great days.
The trial worked.
“It really changed what I’m able to do,” said Faith, now 17. “I can go out in public and feel safer, pre-pandemic, of course. A cold is just a cold now. It doesn’t land me in the hospital for two weeks with bilateral pneumonia, which is nice.”
A Cystic Fibrosis advocate
A month after that transformative phone call, Faith had another life-altering moment. She became a Gardiner scholar through Step Up For Students. Today, Faith is a high school senior who has been homeschooled her entire life. The scholarship helps pay for her tuition and books at Eastern Florida State College in Melbourne, where she is dual enrolled.
At 18 months old, Faith was diagnosed with Cystic Fibrosis. Her life is a steady stream of medication and twice-daily treatments (once in the morning and once at night) that include a nebulizer, inhaler and a percussion vest, an inflatable vest that vibrates at a high frequency to loosen mucus in the lungs.
Until Faith began the clinical trial in August 2018, her routine included trips to the hospital. Lots of trips. In 2016 alone she was hospitalized eight times with the average stay of two weeks. That’s one of the main reasons Deana and her husband, Rich, decided to home school their three children – to control the environment around Faith as much as possible.
Facemasks, hand sanitizers and social distancing were the norm for Faith long before anyone heard of COVID-19.
“When you have CF, every cold, not only do you get sick and get a lot sicker and stay sicker longer because it turns into pneumonia,” Deana said. “But CF is a progressive disease and every illness you get does some amount of permanent lung damage, so the more you have, the faster the lung damage builds up and the earlier you need a lung transplant.”
Faith is an advocate for opt-out organ donation, where donating is automatic unless a person requests otherwise. In the United States, people have to opt-in to have their organs donated. Faith explained why opt-out is so vital in a video she made last year for one of her college classes.
“In the CF community, people need a lot of organ donations, especially lung donations and liver donations less frequently, but lung donations are the big thing,” Faith said. “A lot of times there aren’t enough organs donated for everyone on the list.”
Cystic Fibrosis damages organs, namely the lungs and digestive system, by attacking the cells that produce mucus, digestive juices and sweat. These fluids become thick and sticky and clog passageways, usually in the lungs and pancreas.
It is an inherited disease, which can be caused by any one of a 1,000 gene mutations in the parents. Faith inherited a mutated gene from each of her parents. Having two is what qualified her for the clinical trial.
The life expectancy of those with Cystic Fibrosis increases with the advancement of treatments. According to a 2019 article in Medical News Today, prior to the 1980s, half of those with the disease did not reach their 20s. Today, most Cystic Fibrosis patients live into their 40s and lead active lives.
That’s why the clinical trial was important to Faith and to the Cystic Fibrosis community. If the treatment – a triple combination of drugs – worked, who knows how far they can extend the life-expectancy?
“(My future is) much less bleak,” Faith said. “We don’t actually know, because I’m in the first generation of patients to have access to these drugs. We’re making the science right now. We just don’t know, because there aren’t adults who got on these as teenagers and grew up with them. We’ll figure out what happens. It’s changed so vastly because of the access to this new life-saving medication that we don’t really know for sure. We just know it’s a lot better and has the potential for us to live normal lives.”
Being accepted to the trial was great news for Faith and her family. But there did remain one mystery: Was she going to be in the group that received the triple-combo of drugs? Or was she going to be in the placebo group?
“I’ve always followed the ‘hope for the best, prepare for the worst’ scenario,” Faith said.
She had her answer one month into the treatment when the result of a pulmonary function test was 107. Her results were normally in the 80s.
“I thought it was a fluke, so I did it again,” Faith said.
The result was above 100. She recalled one occasion when her result from that test reached triple digits, and that was when she was 7.
“I was in shock,” she said.
Faith knows of Cystic Fibrosis patients in the clinical study whose health improved so much they are no longer on the list for a lung transplant. In 2019, the FDA approved the triple combo drug for nearly all who have Cystic Fibrosis.
“This drug has been such a miracle for them,” Deana said. “It’s really changed the entire CF community as long as you qualify for it. But not everybody who has CF qualifies for it. It’s mutation-specific.”
Keeping the lungs as healthy as possible is a key to combating Cystic Fibrosis. It helps to be as active as possible.
Faith is as active as possible.
She runs half-marathons (13.1 miles). She ran her first when she was 12. She has run nearly a dozen since.
She kayaks and surfs. She hikes and camps with her family.
Faith paddleboards in the Atlantic Ocean, which is 15 minutes from her home. She was preparing for the Crossing for Cystic Fibrosis in June, where participants cross the Gulf Stream from Bimini in the Bahamas to Lake Worth, Florida on standup paddleboards. It’s an 80-mile journey that Faith expected would take 15 to 18 hours to complete. The event was canceled due to the pandemic but is rescheduled for June 2021.
Faith was named the CF Workout Warrior for June by the Team Boomer, Fighting Cystic Fibrosis. The charity is run by former NFL quarterback Boomer Esiason, whose son, Gunner, has Cystic Fibrosis.
“I’m very active and outdoorsy,” she said.
Faith wants to be a marine biologist. She works part-time at the Florida Wildlife Hospital and Sanctuary near her home.
She loves penguins and dolphins.
“I have a particular soft spot for marine mammals,” she said. “I also love sharks and think that they are vastly misunderstood.”
Thanks to new medication that Faith helped pioneer, her future is, as she said, “less bleak.” She looks forward to a long, normal life.
“We had hope that it was going to change her life,” Deana said. “I don’t think any of us fully expected it to be as good as it is.”
Roger Mooney, marketing communications manager, can be reached at firstname.lastname@example.org.