Cystic Fibrosis patients face food insecurity

Posted at 4:04 PM, Jan 27, 2020
and last updated 2020-01-27 20:17:26-05

BOISE — Cystic Fibrosis carries a hefty price tag.

"[It's] very expensive, it can be, you have to do a lot of digging to pay for the [medications]," said Rachel Gerdon, who was diagnosed with Cystic Fibrosis at 13 years old.

Some patients find after paying for their daily medications and respiratory treatments, they can't afford a trip to the grocery store.

"It's not unusual for patients to have either occasional or ongoing difficulties affording food," said social worker Kimberly Matias.

The clinic found a third of children, and nearly half of their adult patients are food insecure through a study in 2012. Now, St. Luke's stocks their shelves with essentials for patients in need. It started after admitting a teen to the hospital around thanksgiving time in 2012, and the teen wasn't in a rush to get home for the holiday.

"They said, 'Oh please, I'm being fed here,' and we all went oh my gosh," described clinical research coordinator Dixie Durham, "we had a sense of who was food insecure in our clinic and that just hit it home for us."

People with CF generally need a higher calorie, fat, and sodium diet.

"Just needing to eat more calories means they're usually going to need to eat a higher quantity of food or foods that are more calorie and fat dense, and it's not unusual for those to be more expensive foods," said Matias.

Being 'food insecure' doesn't mean these are people living below the poverty line; it's typically people who don't have room in their budget at certain points in time. Rachel has found the program to be extremely useful for this reason.

"It kind of fills in those spaces where I have to spend the money on [medications] or treatments for appointment co-pays, it kind of takes that little piece that you don't have for groceries or food and fills in those spots," said Gerdon.

Matias also works with families who use food stamps and community food pantries but says it's not always enough.

"In food stamps, families cant get extra just because they have an additional nutritional need, so that's a great and fixed resource, but it's just not enough," said Matias.

They received a grant in 2018 for more data collection and partnering with non-profits to battle food insecurity.

For food, the clinic partners with the St Luke's Children's administration and the W. Fish foundation.
Dixie and Kimberly from the clinic are also on a national committee to tackle food insecurity around the nation for CF patients.