‘It’s insane’: ACA policyholders say soaring health insurance premiums are jeopardizing lives

Colorado mom Astrid Storey, a thyroid cancer patient with an autoimmune disorder, was recently notified that her monthly premiums under the Affordable Care Act (ACA) will jump by nearly $500 in 2026. A naturalized U.S. citizen from Panama, she said she’s now contemplating what was once unthinkable: giving up her American dream and moving to a country with universal health care.

Nathan Boye of Orlando, Florida, has diabetes and said he’s been informed the monthly premiums for his ACA policy would soar from $28 to more than $700. The married father-of-three said he is now considering foregoing health insurance altogether.

And Doug Butchart, whose wife, Shadene, is living with the neurological disorder amyotrophic lateral sclerosis (ALS) said he doesn’t know how he’s going to pay for her medications. A retired mechanic from Elgin, Illinois, Butchart said he’s gotten a notice that the monthly premiums on his wife’s ACA policy will climb to $2,000. Combined with an annual deductible of more than $8,000 and $10,000 in out-of-pocket expenses, he said his wife’s health care costs will total more than his monthly Social Security check, which they both live on.

An estimated 22 million of the 24 million ACA marketplace enrollees are currently receiving enhanced premium tax credits to lower their monthly premiums, which were part of the original ACA legislation and expanded in 2021 during the COVID-19 pandemic under the American Rescue Plan. But with the tax credits set to expire at the end of this year, many policyholders are learning the ACA, commonly referred to as Obamacare, will no longer be affordable unless Congress intervenes.

An extension of the tax credits was not included in President Donald Trump’s megabill, which was signed into law in July.

The issue has become a political football, prolonging the government shutdown, now the longest in U.S. history.

The majority of Democrats have refused to vote to reopen the government until Republicans agree to extend the ACA subsidies. But GOP leaders say they won’t negotiate until a clean funding bill passes and the government reopens.

As both sides blame each other for the shutdown, millions of Americans who bought into the ACA marketplace find themselves caught in the crossfire of the stalemate.

Premiums set to rise even without the tax credits
Storey, a graphic designer and owner of a small business in Denver, said she doesn’t receive the ACA tax credits. But in a notice from her insurance provider, Blue Cross Blue Shield, which she shared with ABC News, her monthly premiums are set to rise from $1,400 to nearly $1,900.

“I have an autoimmune disease, and I also have thyroid cancer. So, I had very specific needs as to which doctors and which medicines I needed to have covered in this plan,” Storey said, adding that she has a $2,000 deductible and many out-of-pocket expenses.

Storey, 45, said she purchased her policy through Connect for Health Colorado, her state’s ACA portal, and has been working with a broker provided by the insurance carrier to help navigate the added costs.

Storey said her husband, Denis, who has been doing contracting work for her business, has taken a part-time job at a Starbucks to help make ends meet. But Storey said there is a limit to how much more she can pay for health care.

If her premium rises to $2,500 a month, she said that she and her family will sell all their belongings and leave the country. Storey said she also has citizenship in Panama and Spain, the latter of which has universal health care.

“I have a lot of feelings about being run out of my country because of health care costs,” Storey said. “The American dream is a disappointment when it comes to health care.”

In a statement to ABC News, Anthem Blue Cross Blue Shield said that its ACA plan rates “reflect the care and costs we expect members to use next year. Like other insurers, we’re seeing higher utilization and more complex care among ACA members — particularly in emergency room visits, behavioral health and specialty pharmacy. For instance, ACA members use the ER at nearly twice the rate of those with employer-sponsored coverage.”

Laid off due to tariffs, now facing more than a 2,500% jump in premiums
Boye, from Florida, said he currently pays $28 a month for his ACA plan through Blue Cross Blue Shield, and that 90% of the medications he needs to control his diabetes are covered.

He was notified last month that the monthly premium is set to rise to $733 without financial help, a 2,518% increase.

Boye told ABC News on Thursday that after doing more research and reapplying through the ACA portal, he found a plan that has monthly premiums of $113 a month, contingent on a $620 tax credit.

Boye said he qualified for the ACA tax credits after he was laid off earlier this year as an operations manager for a company that imported medical supplies from China.

“We had to close down because of the tariff. It made it impossible to import,” Boye said.

While he has picked up part-time work, he said he enrolled at Valencia College in Orlando to finish his degree in business administration.

His wife, he said, has insurance through her job as a teacher’s assistant at the University of Central Florida, where she is also studying history. He said their three children, ages 11 to 16, are insured through Medicaid.

Boye said he won’t be able to pay the increase in his premiums, and is hoping Congress works out a deal to restore the ACA tax credits.

He said he has until mid-December to reenroll in his plan. But if the tax credits are not restored, Boye said he is contemplating making a radical change.

“I gave up on the idea of having health care,” Boye said.

Boye said he’s already started researching discount drug companies and cash-pay programs on how he can purchase on his own the two primary medications he uses to control diabetes. He showed ABC News an invoice he got in September indicating his insurance covered the $1,669 price of his primary medication, Jardiance.

Boye said his current predicament has left him feeling like a “tiny fish that does not matter.”

“Realistically, I have no control over any of this,” he said. “I’m just a person who has to navigate the waters and find a solution.”

In a statement to ABC News, a spokesperson for Florida Blue said that, next year, there will be “higher insurance costs for many, and government financial help (premium tax credits) will decrease if the enhanced premium tax credits expire, as they are planned to.”

The organization said it understood members’ concerns and is committed to supporting members, but added that premium increases “are an industry-wide issue, a necessary but concerning response to federal regulatory changes including the scheduled expiration of the enhanced premium tax credits at the end of 2025, as well as the rising cost and utilization of medical care and prescription drugs.”

‘It’s real people that all of this is affecting’
The Butcharts, from Illinois, traveled to Washington, D.C., this week with members of the Muscular Dystrophy Association to discuss their precarious situation with congressional leaders, including their two Illinois senators, Dick Durbin and Tammy Duckworth, both Democrats.

The 67-year-old Doug Butchart said he wanted to show the lawmakers “that it’s for real, that it’s real people that all of this is affecting.”

Butchart said he has received notification, which he shared with ABC News, that the monthly premiums on his wife’s ACA policy through Blue Cross Blue Shield of Illinois will rise from $603.82 to up to $2,000 without the tax credits in 2026. According to the notice he received, even with a tax credit estimated at $738, the monthly premium would be nearly $1,400.

“It’s insane,” Butchart told ABC News.

He said his 58-year-old wife was diagnosed with ALS eight years ago, adding that about 10% of ALS patients survive that long.

Butchart said his wife’s main medication, Radicava, costs about $15,000 a month, and another medication costs $4,000 for a three-month supply.

While insurance has covered most of their medical costs, Butchart said his wife’s out-of-pocket expenses last year were about $3,000.

He said that without the tax credits, and on top of the increased monthly premiums, his wife will have an $8,000 deductible in 2026, and her out-of-pocket expenses could top $10,000.

“That’s a lot of money, way more money than we get in a year,” said Butchart.

He said he and his wife live off his Social Security income and that she does not qualify for Medicaid or any disability income.

“I don’t want to put ourselves in a position where we’re in debt. I’m not 20 years old or 30 years old where I can go out and get a second job,” Butchart said.

In a statement to ABC News, Blue Cross Blue Shield of Illinois said it “remains steadfast in its commitment to a stable health insurance market with competitive plan choices in the individual market, as we have since the inception of the ACA.”

“The rates for 2026 coverage include both new and current individual ACA-compliant plans and reflects industry-wide changes to the market, including the anticipated expiration of enhanced premium tax credits at the end of 2025. Plans are priced to reflect anticipated health care needs,” the company said.

But Butchart said the he still doesn’t see how the company can “justify” such increases in premiums.

“I wish the people who are making decisions and setting the prices were in the same position as we are,” Butchart said.

ABC News’ Kristopher Anderson contributed to this report.

 

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