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As enrollment deadline looms, Americans wrestle with Affordable Care Act’s uncertain future

After Paula Woolley found out her 52-year-old husband, Mitch Evich, had early-onset Alzheimer’s disease, Obamacare was the reason they didn’t go bankrupt. The Trump administration’s pledge to unravel the program has forced Woolley to consider how she would care for him without it.

More than 1,000 miles away, in Atlanta, Todd Wiggins was preparing to enter chemotherapy treatment when he learned his primary care physician no longer accepted his marketplace plan, and his surgeon was also considering dropping it.

Meanwhile, in New Orleans, Carolyn Hennesey, who says she was forced to choose between paying a penalty or spending money on bloated premiums offered through the individual marketplace exchanges, wants Congress “to go back to the drawing board.”

These three people are just some of the millions of Americans across the country who, faced with a Dec. 15 deadline for enrollment, are confronting the imperfect realities of the Affordable Care Act and the efforts to dismantle it.

Americans have less than two more weeks to sign up for individual health insurance through exchanges established under the Affordable Care Act, also known as Obamacare.

So far, 3.6 million Americans have enrolled for 2018 insurance coverage through HealthCare.gov, according to data from the Centers for Medicaid and Medicare. Last year, 4 million Americans had signed up by Dec. 10, but the amount of time consumers have to enroll this year is half of what it was last year.

In 2017, 12.2 million people were covered through the Affordable Care Act. But it’s been a tumultuous year for health care exchanges since then. Though the Trump administration and Republicans leaders on Capitol Hill have not gathered enough votes to follow through on promises to upend the law, which they say is unconstitutional, advocates have pointed to several smaller ways the White House is changing how exchanges work. On Oct. 12, President Donald Trump signed an executive order to immediately halt subsidies to insurance companies designed to cover health insurance costs for low-income Americans. The Trump administration narrowed the 2018 open enrollment period to six weeks — from Nov. 1 to Dec. 15 — compared to 12 weeks last session.

The Department of Health and Human Services cut in half the budget for navigators who help consumers sign up for health insurance and slashed Obamacare advertising by 90 percent, to $10 million. Health insurance advocates say these changes could result in more uninsured Americans and destabilize insurance markets for 2018, leading to fewer options and higher costs for consumers.

A quarter of Americans want to repeal the Affordable Care Act, while an additional 43 percent of U.S. adults say they wanted more from Obamacare, according to an October poll from the PBS NewsHour, NPR and Marist. We put out a call for consumers’ stories and the choices people seeking health insurance were facing as the deadline for enrollment approaches. What follows are a handful of the few hundred stories we heard.

Protesters gather during a demonstration against the Republican repeal of the Affordable Care Act, outside the U.S. Capitol in Washington, D.C. Photo by Aaron P. Bernstein/Reuters

Protesters gather during a demonstration against the Republican repeal of the Affordable Care Act, outside the U.S. Capitol in Washington, D.C. Photo by Aaron P. Bernstein/Reuters

Fighting cancer and hospital bills

For Todd Wiggins, the most stressful thing about his cancer diagnosis was not knowing if his basic health insurance plan would help pay for his treatment or bankrupt him.

In 2014, the freelance copywriter from Atlanta, who guided tour groups along the Grand Canyon, bought an individual health insurance plan with basic coverage under the Affordable Care Act, just in case he needed to go to an emergency room. But a year ago, Wiggins, then age 47, could no longer ignore his abdominal pain and bloody stools. He thought he was too young for his symptoms to signal anything serious, but he underwent tests anyway.

On Dec. 15, 2016, Wiggins and his partner were upbeat when they sat down with his gastroenterologist to hear the results. The news was grim: Wiggins had stage-III colorectal cancer.

Two weeks later, doctors removed a three-inch tumor from his colon and 12 inches of his large intestine. He recovered in a hospital bed until Jan. 1, 2017, when he discovered he had lost his health insurance coverage. His doctors and surgeon belonged to a network that no longer accepted individual marketplace insurance plans like his. He had until Jan. 31 to choose a new plan. While recovering at his mother’s house, Wiggins created a spreadsheet and organized it by provider, plan name, monthly premium, annual out-of-pocket cost and annual coverage limit. He wondered how people without the luxury of time or knowledge of Excel could fully weigh the pros and cons of plans on the exchanges and make decisions in their best interest.

As Wiggins received 12 rounds of chemotherapy treatment that left him too sick to work, Trump vowed to gut the Affordable Care Act, signing an executive order to “ease the impact” of Obamacare and implementing agency-level changes to dismantle the Obama administration’s health care reform. Congressional Republicans introduced several bills to repeal the ACA, though none were successful. For Wiggins, the kind of changes Republicans have vowed to make to Obamacare could mean a reduction in benefits, or, premiums that are prohibitively expensive. His health insurance plan could also disappear.

Obamacare is imperfect, said Wiggins, who is awaiting one more colonoscopy to show if he’s cancer-free. He’s still arguing with medical staff over a bill for the 1.5 days he recovered the hospital without insurance. The total: $3,000. He says he feels his life is caught in “a political game.”

“I don’t understand why ownership of a law is more important than how effective it is,” he said. “Either the Democrats want it to be theirs, or Republicans want it to be theirs, but who cares? They should keep the parts that work, and fix the parts that don’t.”

A Kentucky voter holds a "repeal healthcare" sign at a rally for Mitch McConnell (R-KY) in 2014. Photo by Luke Sharrett/Getty Images

A Kentucky voter holds a “repeal healthcare” sign at a rally for Mitch McConnell (R-KY) in 2014. Photo by Luke Sharrett/Getty Images

Going back to the drawing board

Carolyn Hennesy hates Obamacare.

She doesn’t like the way Congress passed it into law. She thinks the penalty tied to the individual mandate forces people to buy health insurance, even if they don’t think it’s the best value.

Hennesy, 45, runs her own law firm in New Orleans, drives a Honda and works hard to make ends meet.

In September, she found out her health insurance plan had become unaffordable for reasons her insurer never made clear, and she had to turn to the individual marketplace exchanges.

In 2010, when she first opened her practice as its lone lawyer, she chose a private insurance plan that cost $109 a month. The policy didn’t cover cancer treatment, but she was otherwise satisfied. This year, Blue Cross Blue Shield mailed her a letter that said her plan with them would become far more expensive and that she should find a new plan. So she turned to the Affordable Care Act exchanges. She said comparable plans there would cost at least $410 a month, with a $6,500 deductible on minimum catastrophic coverage she says she would never use. She was livid, she said. She chose not to enroll and instead pay a penalty, as an estimated 7 million Americans did last year.

Hennesy, a registered Republican, thinks Congress needs to “go back to the drawing board.” She’s skeptical they can do what’s needed.

“They can fix it without repealing it, but it’s going to require people of good will to get together and do it, and I am not impressed with current climate in D.C. with Republicans or Democrats.”

This month, Senate Republicans unfurled their latest plan to repeal the individual mandate, this time in their tax bill, which passed late last week and now heads to reconciliation with the House version. But health care lobbying groups, including America’s Health Insurance Plans, the American Academy of Family Physicians, the American Hospital Association, the American Medical Association, Blue Cross Blue Shield Association and the Federation of American Hospitals, wrote, signed and sent a letter to Congressional leadership asking that they protect the individual mandate, saying that eliminating it “will result in a significant increase in premiums, which would in turn substantially increase the number of uninsured Americans.”

Supporters of the Affordable Care Act rally before the Supreme Court upheld the law at the Supreme Court in Washington June 25, 2015. The U.S. Supreme Court on Thursday upheld the nationwide availability of tax subsidies that are crucial to the implementation of President Barack Obama's signature healthcare law, handing a major victory to the president.  REUTERS/Joshua Roberts - GF10000138944

Supporters of the Affordable Care Act rally before the Supreme Court upheld the law at the Supreme Court in Washington, D.C. Photo by REUTERS/Joshua Roberts.

Leaving rural America behind

Jacob Hazlitt, 27, runs finances for a dealership that sells American-made trucks in Trinidad, Colorado. Hazlitt talks a lot about money and how to get the most value for his dollar. He voted twice for Barack Obama, but cast his 2016 ballot for President Donald Trump, in part because of his disgust over how Obamacare played out for rural communities like his own.

Before the Affordable Care Act went into full effect in 2014, Hazlitt said he paid a monthly health insurance premium of $89 with a $5,000 deductible. Last year, he said his health insurance became exponentially more expensive — $386 a month with a $10,000 deductible. He pulled the plug on his plan, he said, and decided it was cheaper pay the individual mandate penalty and buy his own private insurance than rely on the exchanges for his health care coverage.

During this year’s open enrollment period for 2018, Hazlitt said he gave Obamacare one more chance. But when he logged onto the online portal for the exchanges, the cheapest plan he found was worse: $488 each month, more than what he pays to drive his Ford F-150.

He decided to again buy a private insurance plan that didn’t qualify for the individual mandate waiver the government offers for those who find health care coverage outside of the ACA. The private plan’s deductible was half of what it would have been on the exchanges. So even after paying the penalty, Hazlitt said he saved $7,000.

Hazlitt says people should have access to health care, but he think federal dollars would be better spent making healthy foods more affordable, or subsidizing gym memberships.

MIAMI, FL - OCTOBER 08:  Affordable Care Act navigator Nini Hadwen (R) speaks with Jorge Hernandez (L) and Marta Aguirre as they shop for health insurance during a navigation session put on by the Epilepsy Foundation Florida to help people sign up for health insurance under the Affordable Care Act on October 8, 2013 in Miami, Florida. The United States government continues to be partially shut down as Republicans hold out hope to cut funding for the Affordable Care Act.  (Photo by Joe Raedle/Getty Images)

MIAMI, FL – OCTOBER 08: Affordable Care Act navigator Nini Hadwen (R) speaks with Jorge Hernandez (L) and Marta Aguirre as they shop for health insurance. Photo by Joe Raedle/Getty Images.

Planning for a future without Obamacare

At first, Paula Woolley said, her husband’s mistakes were subtle enough to easily blame on something else. At home, he sometimes paid the gas bill twice, or forgot to pay it at all. At work, his editing errors eventually cost him his job. Her husband was only 52, and they were raising two children, a son who would soon graduate college and a daughter still in high school. Maybe he had anxiety or adult attention deficit and hyperactivity disorder, she thought. It wasn’t until a doctor diagnosed him with early-onset Alzheimer’s Disease in 2015 that she realized they were facing “a diagnosis with no cure.”

The freelance copyeditor from Somerville, Massachusetts, lives with her husband and 16-year-old daughter in a home they bought 22 years ago.

On the fly, Woolley scrambled to learn not only about her husband’s illness, but also how to pay for it. Her freelance copy editing work couldn’t make ends meet, and the choices and what was at stake were overwhelming, she said. When Woolley found out her family qualified for health care under the Affordable Care Act, she said she realized “this is a safety net.”

“We had been solidly middle class, and I just felt like we were falling out of the middle class,” Woolley said, her voice trembling. Obamacare and her husband’s Social Security and disability benefits caught her family at a critical time, she said.

This year, with Obamacare hanging in limbo, Woolley said she has had to quickly educate herself on what options are available to her husband, daughter and herself, how much they cost and if they can afford it.

Through the exchanges, Woolley’s monthly premiums for her family for 2018 would rise from $369 to $472.

Her husband and daughter will qualify for Medicaid next year, but twice this enrollment session, when she picked up her phone to call for more information about those plans, the call cut off at 45 minutes because her wait time was too long.

In 2017, her household income went down, but her premium for 2018 rose by $478 a month with a $2,500 deductible, Woolley said. She said many families with disability face this kind of issue when trying to navigate health care costs. And the uncertainty surrounding health insurance and Obamacare has “been extremely nerve-wrecking.”

“I’m feeling overwhelmed, looking at choices and figuring out what’s best for us,” she said. “We’re just getting by.”

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