‘We don’t have time’: Local family fights for access to new life-saving Cystic Fibrosis medication

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BALDWIN CITY, Kan. -- Two sisters share the same life-threatening diagnosis, but one has access to a game-changing medication and the other is fighting to get it.

"We don't have time to wait for insurance companies to play games with her health," Morgan Barrett said.

The sisters, and their brother, all have cystic fibrosis, a rare genetic disease that comes with debilitating symptoms.

Now, the women are in a frustrating fight to get access to a new FDA-approved drug.

We recently told you about the FDA's approval of a drug called Trikafta. It's a "triple combo" that doesn't cure cystic fibrosis but is helping patients have major improvements in their quality of life.

And now one Kansas family is fighting to get and keep the drug.

Morgan Barrett and her two siblings live with cystic fibrosis. The diagnosis comes with serious challenges and limited life expectancy.

"By doing our treatments and taking care of our health best we could, we could prolong our lives but I think we've always lived with the knowledge our lives we're going to be as long as a normal person's," Barrett said.

Morgan's biggest battle has been a chronic cough. Treatments have done little to help, until getting put on a brand new drug called Trikafta.

"This was the big one we were all waiting for," Barrett said.

The first day on Trikafta, her breathing was already better. And now, just three weeks in, that pesky cough is gone.

"My lungs just feel so much clearer," she said.

Her brother's also been able to take Trikafta. So their sister, Allison, was anxious to try it, too, especially after reading dozens of stories about its benefits in CF support group online. Allison's doctor agreed it would help and wrote her a prescription.

"Three months later, I still don't have it," Allison said.

Her insurance company is denying coverage of Trikafta. She's appealed the decision three times, with help of her doctors, nurses and the CF Foundation with no luck.

"It doesn't seem like it's right that your doctor says yes, this person needs this medication, and you have to jump through all these hoops, then the insurance company is the one that says you can't have it," Allison said.

And with an annual out-of-pocket price at $390,000, almost no one can afford Trikafta without insurance.

"It's really frustrating to watch her still suffer as much as she is, and not be able to have access to something that is available," Barrett said.

Barrett recently changed jobs, and is already appealing a new insurer's decision to not cover Trikafta. Because she's already started treatments and is seeing positive results, she's hoping to win the appeal and continue taking the medication.

The sisters point out, patients with CF who don't have access to the medication, often need a combination of several other costly drugs, and if they get sick and end up in the hospital that can cost insurance companies even more than Trikafta.

They family is hopeful with time, more insurers will approve the medication. They are even considering writing to their congressional representatives in hopes something can be done to get more patients access to the drug.

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