Capitol Hill is still embroiled in a debate about the cost of health care, who should pay for it and how. And Americans across the country have been having that debate — who gets covered, which physician they can see and how much they should pay — almost every day for years now, since Congress passed President Barack Obama’s signature health care law in 2010.
Last week, the House Republican plan to repeal and replace the Affordable Care Act failed to earn enough support for lawmakers to vote on the law, the American Health Care Act.
“Obamacare is the law of the land,” House Speaker Paul Ryan said after the latest reform effort failed. “It’s going to remain the law of the land until it’s replaced. We did not have quite the votes to replace this law. And so, yes, we’re going to be living with Obamacare for the foreseeable future.”
More than half of U.S. adults approve of the Affordable Care Act, according to a national survey from Pew Research Center, but those opinions quickly split along political party lines.
The PBS NewsHour asked people if they were concerned or encouraged by possible, future changes to the Affordable Care Act. More than 1,000 people responded from across the country — from Maine to Missouri and California.
These are a few of those stories.
LOCATION: Wichita Falls, Texas
OCCUPATION: Car and house insurance agent
Jennifer Cartwright knew something was wrong when her 2-year-old son’s stomach swelled up like a balloon. Doctors later removed a fast-growing, softball-sized cancerous tumor — a rhabdomyosarcoma. The Affordable Care Act went into effect just as her son, Zach, entered a year of treatment, including radiation “that just fried his insides” below his lungs and above his knees. He was left scarred and could only eat through a tube, but he survived. Today, he loves to play video games, especially Mario Brothers and Lego Dimensions, and will celebrate his 10th birthday this June.
Annually, his medical bills for hospital visits and a dozen medications add up to as much as $100,000, which — in a good year — equals Cartwright’s entire full-time income selling car and house insurance. But Zach’s parents haven’t worried about him hitting a lifetime cap on insurance coverage because Obamacare abolished that practice, Cartwright said. To defray costs, she enrolled Zach into Medicaid, but she said Texas tightened access to Medicaid services and has rejected care Zach receives since November: “They just made everything harder. Everything needs pre-authorization.”
A lifelong Republican, Cartwright sees both sides of the health care debate that has embroiled the nation. She said she agrees the nation overspends on health care and must cut costs, “but where?” she asked. State policymakers and insurers don’t want to make life harder for pediatric cancer patients and their parents, she said, but “they don’t realize how delicate a balance it is, and now it’s out of whack.”
“I’m in this catch-22. I understand insurance. I understand it’s a business. It’s for-profit,” she said. “But I also see it from the personal side. Here I am in the middle of it all.”
LOCATION: Greensboro, North Carolina
When Timothy Tribbett first became a veterinarian two decades ago, he said his health insurance was “super affordable” at $125 each month. But now, that price has quadrupled, and Tribbett grows angry when he talks about how he must pay more than his mortgage payment to stay insured.
After the Affordable Care Act passed, Tribbett said the small veterinary practice where he and 17 other people work announced they would no longer cover employee health insurance, and none of them qualified for subsidies to ease the burden. Tribbett, 50, said he blames Obamacare for driving all but one insurance company out of his community. Most North Carolina residents who buy marketplace insurance have only one option this year, NPR reported. Tribbett would rather see high-risk pools set up for the uninsured (“don’t take money out of my pocket”) and plans offered across state lines to encourage “some competition.” The latter is something not included in the current version of the American Health Care Act, but it’s been discussed as something that could be part of future phases of Republican health care reform.
“If you work for a small company, and you have to get it on your own, you are absolutely screwed,” he said. “I can’t chance going without it right now, but if it keeps going up, I just can’t afford it.”
In the past, Tribbett has taken medication for OCD and chronic neck pain, but he avoids going to the doctor to get prescription refills because his deductible for each visit is too high, he said.
While his premiums climb, Tribbett said he’s also trying to save some of his $75,000 annual income for retirement. He hopes to move back to his family’s 100-acre farm, nestled in the Blue Ridge Mountains near Roanoke, Virginia. But at this rate, Tribbett thinks he’ll be 70 before he can afford to stop working.
“I’m not looking forward to working another 20 years,” he said.
Tribbett thinks the Republican health care plan moving through Congress is a “step in the right direction.” He supports proposed tax credits “for middle class people like me that have to buy their own insurance without subsidies,” and while conservative groups have criticized parts of the House Speaker Paul Ryan’s plan, Tribbett said “hopefully, those concerns will be addressed.”
LOCATION: Shreveport, Louisiana
OCCUPATION: Currently unemployed auditor
Medicaid patient to GOP: ‘You’re signing my death sentence’
More than 11 million adults — like Julia Raye of Louisiana — gained health insurance through the Affordable Care Act’s expansion of the Medicaid program. But under the Republican plan to replace the ACA, Raye, an unemployed diabetic who will be starting a new job in the coming weeks, may be barred from reentering a much more restrictive Medicaid program in the future if she once again falls on hard times. Going without insurance and appropriate medications would be disastrous for her health, she says. “If you don’t think that Medicaid is important, then you’re signing my death sentence,” Raye said to the congressional leaders deciding the fate of the ACA. “If you’re comfortable with that, then go right ahead.”
LOCATION: Fairmont, West Virginia
OCCUPATION: Health insurance counselor for West Virginia Medicaid
Mina Schultz’s life was ready for launch. She had just earned her master’s degree in French from the University of Missouri in 2011 and wanted to join the Peace Corps. At age 25, she planned to go without insurance for a few months, but Schultz’s father took advantage of a then-new Obamacare provision that allowed him to add her to his insurance. Then her right knee began to ache and swell. She iced it for six weeks, and doctors suggested the avid runner give her hobby a break to let her condition improve, but her knee only got worse. She went for an MRI scan, covered by insurance.
“I joked with the technicians, ‘Did you see anything good in there?’ They said, ‘Yeah, you’ll be glad you came in.’ I thought, ‘Ok, I must have torn something.’”
Schultz had osteosarcoma, a rare bone cancer normally found in children. She still chokes up when she remembers the moment she learned she had cancer. A year later, doctors replaced her knee (half of her right leg is titanium), and she entered an Affordable Care Act health exchange for insurance while in remission. After purchasing an ACA plan, Schultz joined the effort to sign up more enrollees. In October 2014, she found a job at a community health center near her mother’s home in Fairmont, West Virginia, enrolling hundreds of West Virginians in the health insurance marketplace and onto Medicaid.
In December, Schultz said new enrollees streamed into her office, but after President Donald Trump’s inauguration, they’d scoff at the prices for coverage. She said they told her: “‘Trump is going to fix this. I only need this for a few months and then this will go away and it’ll be cheaper.’”
“People want the health insurance, they just don’t want huge deductibles and huge premiums,” she said.
With Obamacare, Schultz said her family avoided bankruptcy and she “can afford care despite a preexisting condition.” She said she’s terrified the exchanges may go away. Insurance companies decide in May which marketplaces they will commit to in 2018 and how much they will charge, but Schultz worried insurers may balk over uncertainty about Obamacare’s fate, raising insurance prices even more.
“They already went up too much this year,” she said. “I worry that people are going to drop out because they can’t afford it.”
LOCATION: Indianapolis, Indiana
When Kourtnaye Sturgeon cooks dinner, her thoughts drift to her older son, his hard-fought battle against his heroin addiction and how close he came to death.
The summer after her son Ryan graduated high school, Sturgeon learned about his drug use. When she confronted him (“with love, not anger”), Sturgeon said, “he broke down.”
Her son went in and out of treatment, including detox, counseling and taking suboxone, but his addiction’s hold was strong. He dropped out of college in summer 2010 and lost his job at a pasta restaurant. He not only stole from her, Sturgeon said, but also shoplifted meat from grocery delis and resold it to buy drugs and further fuel his addiction.
Finally, Sturgeon added him to her insurance in January 2011 under Obamacare. Her son ended up in a 90-day inpatient treatment with 60-day intensive outpatient care and counseling, all covered by Sturgeon’s insurance. He has since entered recovery, and this July, now 25 years old, he looks forward to celebrating three years of sobriety, Sturgeon said.
“I know my son would not have survived his illness. I feel very blessed, but I also carry a bit of guilt,” she said. “I’ve met so many parents who have lost their children to overdose.”
Sturgeon said she knows he is in continuous recovery and that “with this chronic disease, relapse is likely,” she said. “But he has learned so much along the way from the benefit of really high quality treatment to help carry him through the relapse back health recovery.”
The Trump administration unveiled its proposed budget earlier this month. It’s unclear which agency will take the lead on a national strategy to combat opioids, a job the White House Office on National Drug Control Policy has held for three decades. The Trump budget eliminates that office altogether.
Sturgeon’s son is not alone, Sturgeon said, and neither is she. At a time when an estimated 20 million Americans live with substance addiction, Sturgeon said it is important to make treatment accessible to combat this “complex disease.”
LOCATION: Radnor, Ohio
OCCUPATION: Retired marketer
Older Americans fear going ‘back to begging’ for health care under GOP plan
Older Americans who don’t yet qualify for Medicare, like Mindy Hedges, 61, could see a dramatic rise in their out-of-pocket costs for health insurance under the Republican plan to replace the Affordable Care Act. Hedges, a diabetic from Radnor, Ohio, receives a substantial subsidy through the Affordable Care Act’s insurance marketplace, and she estimates her share of the premium could rise more than $15,000 per year under the GOP proposal. “That’s half of my fixed income,” she said. “I’m probably gonna have to drop my insurance.”
LOCATION: Albany, California
OCCUPATION: Full-time undergraduate student at the University of California at Berkeley
When Flor Marshall gave birth to her son, Felix, nine months ago, she spent two days and three nights in the hospital for care that would have cost her family $12,000 if not for coverage under Medi-Cal, California’s version of Medicaid. For more than a year, she has relied on state-based insurance for pre- and post-natal care.
Marshall, who earned a scholarship to study German and linguistics, transferred to the University of California-Berkeley while raising her son. He’s crawling and recently started pulling up on low shelves filled with history and poetry textbooks. Her husband, a Marine veteran deployed four times, including once to Sanaa, Yemen, works as a security guard at Target. Most of his paycheck goes towards paying their apartment’s $1,600 monthly rent.
With a fixed income, Marshall said she is “extremely worried” her family will lose Medi-Cal coverage if changes to the Affordable Care Act rip holes in the nation’s health care safety net. She could sign up for the university’s student coverage, but she said upfront costs are more expensive, copays are higher and the quality of her son’s insurance would decline. “At this point, we just have to decide whether if it’s cheaper to not have coverage for myself, and if I have an emergency, deal with it then,” she says.
LOCATION: Weldon Spring, Missouri
Seven generations ago, Jolene Benne’s family began to farm near the banks of the Missouri River in Saint Charles County. Growing up, she said she remembers people driving roughly 30 miles from Saint Louis to her parents’ home to buy fresh eggs. Today, Benne and her husband, Ron, run a roadside stand and sell free-range chicken, beef and pork. Her family farm, one of last remaining in in her community, is surrounded by suburban homes.
Self-employed with a modest but sustainable income, the Benne family bought individual health insurance plans that were never great, she said. When Obamacare passed, Benne said the paperwork was “atrocious” and she said her “choice had been taken away.” During her first year with Obamacare marketplace insurance, she scanned her list of approved doctors and recognized none of their names. When she needed to remove earwax buildup, her family’s ear-nose-and-throat doctor was not covered, and her only option was to drive to Saint Louis. Instead, she handed $100 to her family’s preferred doctor.
The system is unfair and she hates Obamacare, Benne said. Benne understands how illness or self-employment leaves some people uninsured, but the Republican who voted for Trump — “his rhetoric rubs me the wrong way, but we did not want the same thing going on” — wants more control over her health dollars, she said. Doctors can reject Obamacare patients and insurance companies can withdraw from health insurance marketplaces. But when it comes to the individual mandate for insurance coverage, she said, “the American people cannot opt out.”
She’s willing to give the Republican plan moving through Congress a chance.
LOCATION: Zanesville, Ohio
OCCUPATION: Vice President, GKM Auto Parts
LOCATION: Dresden, Ohio
OCCUPATION: Store Manager, GKM Auto Parts
For many small businesses, employees’ ‘Affordable Care isn’t very affordable’
Kelly Moore of GKM Auto Parts in Zanesville, Ohio, took pride in offering health insurance benefits to her employees. But Moore says the Affordable Care Act and its mandate that insurance plans cover a set list of benefits drove prices so high she had to make the “gut-wrenching decision” to drop the plan. As Republicans in Congress craft a bill that would repeal and replace the ACA, “I hope that the government steps back a little more from the business of offering health care,” she said.
OCCUPATION: Bankruptcy lawyer
On Valentine’s Day in 2014, Travis Bryan and his wife, Morgan, welcomed their twin boys into the world. Born at “the beginning of viability” at 24 weeks, Austin and Jonah each weighed 1 pound, 10 ounces and fit in his palm.
But four months later, Austin developed meningitis and died. Jonah was alive, but he lived in the hospital’s neonatal intensive care unit for more than six months, breathed through a ventilator for four months, and survived heart surgery and a massive brain hemorrhage. Over the next three years, doctors also diagnosed Jonah with chronic lung disease and cerebral palsy.
Before they became parents, the Bryans lived comfortably — he was a bankruptcy lawyer and she was a teacher. Together, their household income amounted to $160,000, and they enjoyed good health. But for their sons, hospital care added up to $4.5 million — $3 million for Jonah alone. Before Obamacare, Bryan said insurance companies could deny coverage to babies like Jonah because his care simply cost too much under lifetime limits, “an overlooked portion of ACA.”
“These kids are born early. They’ve done nothing. They were born unlucky,” he said.
When House Speaker Paul Ryan released the American Health Care Act this month, signaling Obamacare’s upending, Bryan said he scoured the proposed bill for hours to find any mention of lifetime limits. “If they repeal that provision and if insurance companies are allowed to cap lifetime maximums, our fear is that Jonah will not be covered later,” he said.
Many of Bryan’s friends in Texas voted for Trump. An ardent supporter of Republicans President George W. Bush and Mitt Romney, Bryan said he cast his ballot for Democratic nominee Hillary Clinton during this past election. When he and his friends talk about health care in this country and they hear why Bryan doesn’t want the system to change, the conversation humanizes a political debate, he said.
“They understand better: ‘Wow, maybe the system we have does help more than it hurts.’”
LOCATION: Severn, Maryland
OCCUPATION: Director for a music production studio in Laurel, Maryland
Before the Affordable Care Act passed, it was cheaper for small business owner Jamal Lee, a music and event producer based outside of Baltimore, to fly to Panama for a root canal than buy individual health insurance and undergo oral surgery in the United States. Then, in March 2010, Obamacare was signed into law.
“ACA came into play, and that completely went away,” said Lee, who also has back problems. “I was able to afford coverage. I was able to have any procedures. I was able to be able to go to a doctor without worrying about anything.”
Four years ago, Jamal Lee stood at a job site with his daughter when his phone rang. It was his wife, but she physically could not speak. Lee rushed home to find his wife on the floor next to their bed, falling in and out of consciousness and unable to move.
Doctors later told Lee his wife’s appendix ruptured and performed emergency surgery on her. After completing the two-hour operation, surgeons told Lee, “If you hadn’t gotten there the time you did, she would not be with us.”
Lee credits the Affordable Care Act in part with his wife’s survival, and said he doesn’t know what would have happened if he had to think twice at any point when getting her the care she needed. And he said if his family hadn’t received health insurance coverage by Obamacare, his household would have faced tens of thousands of dollars in medical debt.
“It gave us the peace of mind we needed to let her heal as opposed to wondering, ‘I’m glad you lived to see another day, but we’ve got to get back to work right away.’”
He doesn’t think the Affordable Care Act is perfect, but he said “it’s a step in the right direction.” And in looking at what Republicans have put forward, Lee stressed that now is the time for political parties and interests to work together: “We’re looking for more of a bipartisan approach to health care reform, assisting us as a nation.”
LOCATION: Salt Lake City
OCCUPATION: Manager, Camp Bow Wow
LOCATION: Salt Lake City
OCCUPATION: Front Desk “Camp Counselor,” Camp Bow Wow
For young adults, GOP health plan could make insurance ‘more feasible’
At Camp Bow Wow, a dog day care and boarding facility in south Salt Lake City, young employees like Patricia Smith and John Garrett say the Affordable Care Act caused them to lose their employer-assisted health coverage. After the health law took full effect, their employer could no longer offer group coverage because so many of her workers received subsidies. But for these two, the plans available under the ACA were too costly. Now uninsured, they’ve been paying a penalty that’s gotten more expensive with time. The GOP plan to replace the ACA would offer many young Americans significantly higher tax credits than the current law, likely making insurance coverage “more feasible,” Garrett said.