The response was overwhelming. More than 3,000 people from across the U.S. filled out our questionnaire and shared their challenges, and how their decisions have affected their health and financial well-being.
Some can’t afford to insure their children. Others are seeking cheaper care abroad. Some older adults are counting down the years until they qualify for Medicare.
While these people are among the 27 million Americans who remain uncovered despite the large expansion of health insurance under the Affordable Care Act, their stories transcend politics, reflecting tough kitchen-table decisions about health care faced by many families.
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Whitney Whitman waited until her 7-year-old daughter had been sick for almost two weeks before taking her to the pediatrician for a visit that ended up costing $275. Her family of four in Bird Creek, Alaska, outside Anchorage, last had insurance in 2016.
When she looked for coverage last fall, the cheapest plan Whitman could find was $1,734 per month, with a deductible of $10,500 for the family. She splits her time between mental health counseling and mediating legal disputes, such as divorces. She made about $110,000 before taxes in 2016.
But student loans, mortgages on a home and a rental property, car payments and credit cards squeeze their budget — and health insurance is what got squeezed out.
She said her husband Jason probably broke his finger last year working on their house. “We just taped it up and kept going.”
They’ve done a lot of that. Jason’s knee injury and concussion also went untreated. Whitman would like to get an inhaler to alleviate seasonal asthma in the spring but says she’ll probably skip that, too. She’s thought about moving to Canada, which has universal health coverage, and has looked at jobs across the border.
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“We’re part of the population that’s healthy and isn’t paying into the system,” Whitman said. It’s a tradeoff she’s not entirely comfortable with, especially when her kids go skiing at the nearby Alyeska Resort, where her husband worked until recently.
“Every time my children do something remotely fun and risky, I’m envisioning in my head the horrible medical problems” that might ensue, she said. They wear helmets on the slopes, at least.
“I live in a constant state of fear,” Whitman said.
Tara Sullivan’s flu this winter was bad enough that her friends at the small law firm where she works offered to pay for her to see a doctor, since she doesn’t have insurance.
Sullivan, 58, declined their help, but she had a bad cough, tightness in her chest, fever and chills. So in February she went to the emergency room at Marietta Memorial Hospital, across the Ohio River from where she lives in Parkersburg, West Virginia.
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Her flu had turned into pneumonia, and filling prescriptions for antibiotics, steroids and an inhaler cost her about $250 at Walmart. She also got a $45 bill for a chest x-ray, which she hasn’t paid yet, and she isn’t sure what she might owe for the rest of the hospital visit.
Her job as a legal assistant pays her about $28,000 a year — $1,800 a month in take-home pay. Last fall she looked for an Obamacare plan, and saw premiums that would have cost her around $250 to $300 per month.
“We don’t have enough money to go out to eat, or take my grandchildren to the movies, much less pay for health insurance,” Sullivan said.
Behind on her gas bill, Sullivan got a disconnect notice in January. The money she would have used to pay it went to her prescriptions instead. The late-winter temperature in Parkersburg often drops into the teens overnight, well below freezing. She borrowed from a friend to make the utility payment, keeping the heat, hot water, and cooking gas on.
“I’m just constantly catching up,” Sullivan said.
Her father died recently from cancer, and mother her had it too before she died. Sullivan worries about the same thing, and was able to get a free breast-cancer screening a few months ago from a clinic in town.
“I just think it’s a crying shame, like so many of us do,” Sullivan said. The cancer screening is the only recent preventive care she’s had.
She feels sick again now, at the beginning of April. “I’m almost 60 years old and I can’t go see a doctor.”
Sarah Yoder and her 8-year-old daughter walked out of their pediatrician’s office in early February before the appointment began. Her family dropped their health insurance plan the month before, and the clinic didn’t offer a discount for paying cash. The checkup would have cost $150.
“It makes me crazy, because they’re not even getting that much money from the insurance company,” Yoder said.
Yoder’s family of six lives in Fort Defiance, Virginia, and had been insured last year through her husband Nevin’s job as a nurse practitioner. With Sarah’s work at a construction company, their combined pre-tax income is around $140,000. But their health premiums for this year were going up by $300 to $1,400 a month. That was too much for a plan with a $7,500 deductible, they decided.
Their 4-year-old son was born with a heart condition and genetic disorder. He still qualifies for Virginia’s Medicaid program. The rest of the family joined a Christian health-care cost-sharing ministry for $350 a month.
Yoder’s daughter will get her checkup at the family practice where Sarah goes, because it offers a discount to patients in their health-sharing ministry. Yoder needed medication herself for a psoriasis outbreak in January. She called several pharmacies to check prices, and a coupon cut the price of the topical steroid Clobex to $125 from $600.
So far, they’re ahead. Yoder estimates their out-of-pocket expenses are about what they would have paid with insurance. Money saved on premiums goes into a separate bank account for medical expenses.
“We’re still allocating the same amount of funds. We’re just holding on to more of it,” Yoder said. She hopes the health-sharing plan will protect them from financial ruin in an emergency.
“I think we’re going to be covered if there’s a catastrophe,” she said. “But I don’t know for sure.”
Gustavo Bendeck, a 62-year-old physician assistant from Lubbock, Texas, saw 46 patients at his rural health clinic on March 28. About a dozen were “flying blind,” his term for being uninsured.
He’s flying blind with them.
Last November, Bendeck and his wife Shirley received a letter from Blue Cross Blue Shield of Texas telling them that their $1,000-a-month premium was more than doubling to $2,200. Shirley asked Bendeck what would happen next.
“I’m not going to pay this amount of money,” he told her. He looked for other comparable plans, but most wanted about the same. He makes about $117,000 a year after taxes, he said. He and his wife are healthy, so they decided to chance it.
Life hasn’t changed too much since, though they have a little more free cash even though the prescriptions they both take cost more without insurance. Shirley takes a cholesterol drug and a blood-pressure treatment that together cost about $350 a month, more than double when they had insurance coverage. Gustavo takes a blood-pressure drug that costs $70 to $80 for a 90-day supply, compared to $20 when he was insured.
“My wife is a little more antsy than I am about not having insurance, it worries her,” Bendeck said. “What keeps me calmer is that there’s a lot of us out there that do not have insurance.”
He sees them every day at his clinic, and often works to find them the best price on expensive services like an MRI scan. If he or Shirley needs it, he thinks he can do the same.
“You learn how to develop those kind of networks over time to help your patients,” he said.