Healthcare affordability advocates applaud mother’s efforts on Capitol Hill to reduce out-of-pocket costs for Utahns

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SALT LAKE CITY (ABC4 News) – Approximately three out of every four Utahns disagree that we have a great healthcare system in the country and think it needs to change.

Healthcare affordability was at the center of discussion among lawmakers, industry leaders, researchers, and consumers at Utah Health Policy Project (UHPP)’s annual conference Wednesday.

“I don’t think it’s unreasonable to call this a crisis, especially when you take into consideration the amount of people who are foregoing procedures and medications that they need,” said Courtney Bullard, Education and Collaborations Director at Utah Health Policy Project. 

Organizers applauded Layton mother Jen Hepworth’s efforts Wednesday to enact change at the legislative level and invited her to share her experience during one of their panels at their annual conference.

“Our passion is elevating consumer voices and taking constituents/voters to Capitol Hill,” said Bullard. “It’s super important for legislators, policymakers to be hearing from the actual people who are experiencing these issues and having a say in it. Utahns want the government to take action.”

Hepworth said she deals with affordability issues firsthand. Her 6-year-old daughter, Penelope was diagnosed with Cystic Fibrosis when she was just three weeks old.

“Our first visit to the Cystic Fibrosis Center at Primary Children’s Hospital was overwhelming. One of the only things I remember is the pulmonologist telling us that this is a really expensive disease, so we better have good insurance,” she said.

Although her husband had insurance through his employer, she said her family still had a $10,000 deductible that they had to meet annually. Facing medication that went up to $4,000 a month, she turned to co-pay assistance programs through pharmaceutical companies to help with drug costs.

“Since Penelope was diagnosed and needed care, we decided that I wouldn’t be going back to work, which meant we were immediately down in income,” said Hepworth. “We were constantly thinking, ‘How are we going to pay for other things like extra formula or supplement drinks to get the extra calories she needs?'”

Hepworth became part of the 54 percent of Utahns who reported feeling worried about affording the cost of prescription drugs. She said she felt like the country’s healthcare system is broken.

“If they [insurance companies] can get the money, they’re going to squeeze every drop out of you. It’s not about taking care of a person that needs healthcare. It’s about how much money can we get from it,” she said. “When you have to come down to, ‘Am I going to go to this really important doctor’s appointment or am I going to pay my mortgage this month?’ I think that that’s atrocious.”

As a professional and advocate, Bullard said she often sees consumers grappling with this issue.

“It devastates their budget. Families have to make choices they shouldn’t have to make like between education, transportation, and their prescription drug medication or surgery,” she said. “These are just not decisions that we want Utahns to be making. Research shows those decisions are not good for public health. Almost 30 percent of people are bypassing prescription medication, because of affordability.”

Hepworth partnered with Representative Ray Ward to draft a bill that would reduce out-of-pocket costs for consumers through the ban of copay accumulation programs within insurance companies. She’ll be testifying on Capitol Hill once the bill moves to committee.

“It is really hard for people to all of a sudden come up with these thousands of dollars that they weren’t counting on spending because the co-pay assistance programs had been helping with their deductibles and out-of-pocket maxes,” said Hepworth.

Meanwhile, Bullard said UHPP is working on revamping its network after the repeal of its ballot initiative to expand Medicaid. In the next year, they’ll be working on multiple efforts to improve healthcare affordability such as Canadian drug importation, transparency legislation, and preventing price gouging/unfair prescription drug price hikes.

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