(NEW YORK) — As the federal government shutdown enters its third week, some Americans are worried about the future of the Affordable Care Act (ACA) subsidies.

The subsidies, or premium tax credits, help lower or eliminate the out-of-pocket cost of monthly premiums for those who purchase insurance through the health insurance marketplace.

They were enhanced during the COVID-19 pandemic and are currently set to expire at the end of 2025.

Democrats have been demanding that Republicans pass extensions of the subsidies before the government is reopened, while the GOP says it won’t negotiate until a clean funding bill passes and the government reopens.

A recent analysis from KFF found that premium payments could more than double in 2026 if the ACA enhanced premium tax credits expire.

Some Americans who rely on the tax credits to help pay for some or all of their or their family’s premiums told ABC News they’re worried that if the subsidies expire, they may be forced to choose a less comprehensive insurance plan or they may not be able to cover the cost of their premiums.

We ‘can’t afford to not have insurance’

Doug Butchart, 67, from Eglin, Illinois, told ABC News that his wife, Shadene, has amyotrophic lateral sclerosis (ALS), and currently receives her insurance through the health insurance marketplace.

Shadene Butchart, 58, started off on a Blue Cross bronze plan — or the lowest tier — but, as her disease progressed, the couple decided to upgrade to a gold plan, the highest tier, which covers a higher percentage of her health care costs.

The premium under this plan is $1,273.82 per month. The Butcharts receive enhanced premium tax credits that cover $670 of the monthly premium, leaving them to pay $603.82 per month themselves.

Without the premium tax credits, Doug Butchart said they cannot afford to pay the entire premium out of pocket each month.

“I’ve heard [premiums could rise] anywhere from 25 to 50%,” he said. “And that’s not sustainable because we can’t afford that but can’t afford to not have insurance.”

Doug Butchart said his wife doesn’t quality for Medicare and they don’t meet the income threshold to qualify for Medicaid.

“We’re stuck like in the middle because, normally with an ALS diagnosis, you’re automatically eligible for [Social Security Disability Insurance] and Medicare, but she doesn’t have any work credits, so she doesn’t qualify for Social Security Disability,” he explained. “So right now, we’re doing everything off of my Social Security, and it’s very hard to try and pay all the bills and keep insurance and, if they mess around with the marketplace insurance, it’s going to make it impossible for us to afford insurance.”

Now that the Butcharts have met the deductible for the year, combined with the anticipation of possibly losing tax credits and going to a lower tier insurance plan, the couple is trying to use insurance to get as much equipment as Shadene Butchart needs to manage her ALS before the end of the year.

This includes an order for a new wheelchair that Shadene Butchart could drive with her eyes, and that could cost anywhere from $65,000 to $95,000, Doug Butchart said.

Doug Butchart said they may have to downgrade to a lower-tier plan next year, but he’s not sure if the medications his wife currently takes will be covered by a “lesser plan.”

Doug Butchart, who is a retired mechanic, said he feels lucky that he does not need to worry about house or car payments — both of which are paid off — but there are other bills to pay and he did not expect to have to struggle to meet insurance costs every month.

“You work your entire life to make yourself comfortable and I’m sure there are things that we could do without but there’s not that much crazy spending to possibly have to cover $1,500 a month for insurance,” he said. “That’s a lot of money. … You don’t realize how important insurance is until you need it.”

‘It’s very much a worry’

Nancy Murphy, a retired registered nurse and insurance industry employee, was able to receive insurance through the ACA for the first time this year with Florida Blue.

Every month, her premium is $1,019 and the enhanced premium tax credits cover the total cost, she told ABC News. If there is no deal made before the Nov. 1 open enrollment deadline or the tax credits expire at the end of the year, she’s concerned about being able to cover the cost.

“It’s very much a worry. I definitely could not afford that if the tax credits expire,” said Murphy, 60, who lives in Fort Lauderdale. “It’s a scary thought as a type 1 diabetic.”

Murphy said she uses an insulin pump to manage her diabetes, which is covered by her insurance without a co-pay. However, she said she sometimes uses other medications that have a $30 a month co-pay.

She added that losing the tax credits is a concern because she has other costs she wants to make sure she can manage including property taxes and her daughter’s tuition for college in Boston.

Without knowing exactly how much premiums are going to increase by, she said she’s very anxious about what her budget will look like.

“I’m like in limbo and it’s a really uncomfortable feeling,” Murphy said. “I like to budget and plan out my budget. With tuition, property taxes and repairs that need to be done around the house, I need to map these out.”

She continued, “These things to me are so upsetting. We are American citizens. We should be able to access our tax dollars for our heath care needs.”

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