Monica Bartos has dealt with cystic fibrosis her entire life.
“I was relatively healthy when I was a kid,” the 31-year-old Santa Barbara native and resident told the News-Press recently. “But I would go and see the doctor more frequently than my friends did.”
Miss Bartos, who was diagnosed with CF when she was 9 months old, had a normal childhood playing basketball and softball. But she found her symptoms became worse when she became an adult.
“Because of my lung function, in terms of physical activity, I’m very limited,” she said during an interview at Cottage Health’s Cystic Fibrosis and Bronchiectasis Clinic on upper De la Vina Street. “I can go on a 15- or 20-minute walk, but it’s pretty taxing.”
CF progressed to the point Miss Bartos could no longer work as a preschool teacher, and she lives today on her disability benefits. But she said she hopes to make progress with medication recently approved by the FDA.
The drug is Trikafta. The generic term is triple-combination modulator elexacaftor/tezacaftor/ivacaftor.
Trikafta can be used by people with at least one copy of the F508del mutation. Previously, most people with a single copy didn’t have approved treatment for the underlying cause of CF, according to the Cystic Fibrosis Foundation.
“I think this (the new medication) is a major breakthrough,” said Dr. Richard Belkin, founder and medical director of the Santa Barbara Cottage Hospital cystic fibrosis program. Dr. Belkin, who oversees the De la Vina Street clinic, noted most patients have a single copy of the mutation and qualify for Trikafta.
News of the medication comes as preparations are made for Great Strides Santa Barbara Walk for the Cystic Fibrosis Foundation.
The event will start with check-in at 9 a.m. Nov. 16 at Chase Palm Park’s soccer field, 323 E. Cabrillo Blvd. About 150 to 200 people are expected to show up for the 5-kilometer walk. (That’s about 3 miles.)
Dr. Belkin, who co-chairs the walk with his wife, Dr. Liza Pressler Belkin, said he hopes to match or surpass last year’s event, which raised $39,000. So far, more than $18,000 has been raised.
Nationally, the foundation hopes to raise $37 million this year. The money goes to research for medication and ultimately a cure, and the foundation provides funds for centers such as the Cottage Health clinic.
Dr. Belkin said the clinic has approximately 80 adult patients.
He explained cystic fibrosis is a genetic disorder that leads to inflammation and infection in the lungs. He added that the disease affects other organs such as the liver and pancreas and that patients can develop cystic fibrosis-related diabetes.
Trikafta reduces hospital stays, Jackie Smith-Davis, the development director for the foundation’s Los Angeles chapter (the walk’s host), told the News-Press by phone from her office in L.A. “It gives you more energy.”
She explained patients take two orange pills in the morning and one blue pill at night.
Dr. Belkin, who looks forward to treating his patients with Trikafta, said the medication costs more than $300,000 a year. But he noted CF patients receive insurance through a form of Medi-Cal.
“Trikafta just got FDA approval. Before we’re seeing it in pharmacies, it may take several weeks,” he said. “It’s unclear how long it will take, but hopefully soon.”
Santa Barbara resident Brad Parks hasn’t had to wait for Trikafta. In 2012, he was among the 1,200 Americans (4 percent of CF patients), who had the correct genetic mutation for an earlier drug, Kalydeco (ivacaftor).
“Within two weeks, my entire symptom presentation changed dramatically. I stopped coughing. I felt dramatically better,” Mr. Parks, 69, told the News-Press at the clinic. (He and Miss Bartos were in separate rooms during the interviews because of the risk of CF patients infecting each other. They can’t be closer than 6 feet of each other.)
Mr. Parks, a retired social worker with a milder form of CF, said his lung function remains impaired.
“I’m at about 45 percent of normal lung function,” Mr. Parks said, but noted he and his wife continue to hike in areas such as the Alps in northern Italy.
Miss Bartos, who’s currently on another medication, looks forward to the new drug and recalled her speech to fellow CF patients at last year’s Great Strides walk in Santa Barbara.
“I said, ‘Just keep living your life and doing things that bring you enjoyment and fun and find a good balance in all of that.’ ”
dmason@newspress.com
FYI
The Great Strides Santa Barbara walk will begin with check-in at 9 a.m. Nov. 16 at Chase Palm Park’s soccer field, 323 E. Cabrillo Blvd.
The 5-kilometer (approximately 3-mile) walk will begin at 10 a.m.
There is no registration fee.
To register, go to fightcf.cff.org/santa barbara or call the foundation’s Los Angeles chapter at 323-939-0758.
