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Health Care Anxiety: Three Families Share Stories

Roberts family
From the WebMD Archives

Sept. 19, 2017 -- For some families, health insurance is all that stands between a serious illness and financial ruin.

For them, it has been an especially harrowing year. And it’s not over yet.

After a flurry of failed attempts to either repeal, or repeal and replace, the Affordable Care Act in July, Republicans in the U.S. Senate are trying one more time. The bill, sponsored by Sens. Bill Cassidy, R-LA, and Lindsey Graham, R-SC, would roll back the Medicaid expansion, which many early estimates say would likely leave millions uninsured. 

Insurers could once again consider a person’s health history -- or pre-existing conditions -- before issuing them coverage. It could also end the requirement that all health plans cover a certain set of essential health benefits like maternity care and prescription drugs.

The Senate Health Committee is also holding hearings aimed at finding bipartisan support for ways to stabilize the individual insurance market.

President Donald Trump has threatened to end government payments to insurance companies that help hold down out-of-pocket costs for consumers, while his Department of Health and Human Services gave insurance companies more time to ask for rate increases on their 2018 policies.

The result, according to America's Health Insurance Plans -- an industry lobbying group -- is likely to be higher premiums and fewer options for people who want to sign up through the individual Marketplaces.

In 2017, that included 12.2 million people.

We talked to three families who have been nervously watching these developments about how they are doing now and what they’d like to see happen with the Affordable Care Act, aka Obamacare.

'We're in that dangerous middle ground of families that go bankrupt because of one tragedy that isn’t covered.'

Julia Roberts has been anxious about health care for 17 years.

Roberts (no relation to the actor) and her husband live in Atlanta, where she owns a consulting business. Her son and daughter, ages 18 and 15, have a newly recognized genetic condition that’s so rare, they helped researchers at the National Institutes of Health find the gene that causes it.

The condition doesn’t even have a name yet, but it’s devastating.

It causes liver and kidney failure and vision problems. Both of her children had kidney transplants when they were 8. They will eventually need new livers. And because kidney transplants don’t last a lifetime, they’ll need kidney transplants again, too.

They have seven to 10 doctor appointments a month, and that’s when they’re healthy.

Here’s how much all that costs: Before insurance, the hospital stay for each transplant was roughly $200,000. The drugs they take to keep their bodies from rejecting their new kidneys cost $6,000-$12,000 before insurance.

That doesn’t include the special schools they need for extra tutoring or mental health care to help them deal with the stress of having a chronic illness.

Roberts says the constant medical care means constant debt.

“We basically go anywhere from $35,000 to $80,000 in expenses, depending,” she says.

“We put it all on payment plans. Long after my kids are in college and supporting themselves, I’m assuming I’m going to be paying medical bills,” she says.

Not having health insurance is simply not an option for them.

Before the Affordable Care Act, the family was paying $3,300 a month for coverage through Blue Cross Blue Shield. The first year of Obamacare, their cost dropped to $1,700 a month. It saved them $36,000 a year.

“It was basically my part-time salary,” she says.

Roberts and her husband make a good living. They don’t qualify for subsidies. But they are also financially balanced on a knife edge.

“My husband and I had good salaries, we had double income, no kids for 5 years of our marriage, we had a couple of properties, we had a hefty retirement, a hefty savings.” Roberts says that’s mostly gone, and they aren’t as stable as they once were.

“We're part of that group that makes too much to get state or federal help, and we make too little to pay out of pocket for everything. We're in that dangerous middle ground of families that go bankrupt because of one tragedy that isn't covered,” she says.

When Humana dropped out of the Marketplace last year, Roberts had to shop for another plan that would cover their expensive transplant drugs.

After 70 hours of research, she found one -- through Kaiser -- but it meant they had to leave most of the doctors and nurses who had been caring for their medically complicated family for years.

“It was frightening,” she says.

Most of all, Roberts feels tired of all the uncertainty about where care is going to come from, how much it’s going to cost, and what it will mean for the rest of their lives.

“All of our decisions for health care and how we make sure our family is taken care of financially and have what they need in order to live healthy, productive lives is completely reactive, because of the way our health care system is set up. It's very frustrating,” she says.

This year has been a roller coaster of emotions as she watched Congress propose, and then narrowly reject, plans that could have sunk her family.

If the law is repealed, and insurers can charge much higher premiums to people with pre-existing conditions, she says, it could be catastrophic. “Pre-existing conditions come back. Boom, we’re done,” she says. “Mental health not covered. Boom, done. Medication changes, done.”

She reads everything she can get her hands on about healthy policy. She follows health care proposals the way some people follow sports teams.

“I know something has to be done. I do,” she says. “I understand that businesses are in the business to make profits and keep people employed ... but I don't think that taking insurance away from the most vulnerable people -- the elderly and the sick -- is the way to do it. We shouldn’t want health care just for some people.”
 

'We’re paying these crazy prices … and we're getting nothing.'

Shannon Edgerton, 44, is pregnant with her seventh child. After six boys, she is trying -- one last time -- for a girl.

She has health insurance through the Arizona Obamacare Marketplace -- a policy that costs her large family $1,100 a month, with a subsidy.

But as she nears the end of her first trimester, she still hasn’t been to an obstetrician for her first check-up because she can’t find one that takes her insurance.

Edgerton and her husband started their own business in 2014. They are FedEx contractors in Queen Creek, AZ. They have 16 employees.

In 2015, they went without health insurance because they were so busy getting their business off the ground, they missed the open enrollment period.

In 2016, they had a plan through the Arizona exchange, offered by UnitedHealthcare. United was the only company selling subsidized policies in Pinal County, where they live.

“It was just so bad, nobody would take it,” she says.

Then, United pulled out of state Marketplaces across the U.S.

“For a while, we didn't have a single company writing policies on the exchange,” Edgerton says.

Finally, Blue Cross Blue Shield agreed to cover Pinal. Edgerton was thrilled. She thought because it was a big company and a recognized name, the coverage would give her more choices. It didn’t.

“I can't find anyone that will take it. Everywhere I go, they tell me they won't take it,” she says.

She even went to the Blue Cross website and searched for providers in her network. She found one, and she was really excited, but when she called the office to set up an appointment, they told her they’d stopped taking those policies, which are called Blue Cross Blue Shield Neighborhood plans.

“I finally found somewhere for my kids to go, but it's not that great of an office. I'm used to going to an office that was nice, that I liked the doctor that I chose,” she says.

She says the pediatricians who see her kids now are nice, “but it’s not where I would choose to take my kids. It’s the only place I’ve found that would take them.”

Soon, she’s going to sit down at the computer again and try to find more obstetricians, hoping one will be a good fit for her high-risk pregnancy.

But if she can’t, she fears she’ll have to keep paying her insurance premiums and then pay for her obstetrical care out-of-pocket.

“I'm fed up with Washington right now,” Edgerton says. “I have voted both Democrat and Republican in the past. This time, to be honest, I wasn't happy with either one of the candidates.

“The only reason I voted for Trump was health care.”

She was stunned when her senator, John McCain, cast the vote that blocked an effort to repeal the Affordable Care Act in late July.

“His vote really upset me,” she says. “That’s when I threw in the towel. I was really counting on repeal,” she says. “His vote hurt a lot of families. Ours being one of them.”

She said she would like to see more competition in the Marketplaces.

“I wish there was a way -- like car insurance, or anything else -- that we could go out and shop. That helps keep the prices in check,” she says.

“I just need somebody to fix this. I blame both sides of the aisle,” Edgerton says.

“I wish they could just come together and find a plan that helps all Americans. I feel like the Affordable Care Act helps those that are extremely poor and doesn't hurt those who are extremely rich, but I feel like everybody in the middle -- we're the ones who are taking the heat on this. We're the ones who hurt,” she says.

“We're paying these crazy prices, so that we can help the poor, and I'm not against helping the poor, by any means, but then it hurts us. We're getting nothing.”

'I feel like I'm slowly dying'

On August 11, Julee Compton posted publicly on Facebook that she’d been without her thyroid medication for 3 weeks. “Not being able to afford our health insurance sucks. Not being able to buy our medicines sucks,” wrote Compton, 33, who lives in Spanaway, WA. “I can feel it all over my body. I feel like I’m slowly dying.”

The medication costs $8 a month. She knows that may not sound like a lot, but after spending $100 to $150 on groceries each week, she says her family just doesn’t have it. 

From April 2016 to February 2017, Compton and her husband ran their own plumbing business. Their income was low enough that they qualified for assistance through the state’s Medicaid plan. 

In February, her husband joined a four-person plumbing company that doesn’t offer health insurance. He started making more money, which was great, but it lifted them out of the income bracket they were in. Thankfully, Compton says, their three children -- ages 15, 9, and 21 months -- still qualify for Medicaid.

The two older kids have special mental and physical health needs. The 15-year-old has hypothyroidism and adrenal insufficiency -- conditions that mean her body doesn’t make enough of hormones it needs to function. She almost died in April before doctors figured out what was causing her symptoms. She spent a night in the intensive care unit. She needs monthly shots of growth hormones that cost about $1,000 a month.

The kids are covered, but their parents are not.

Although they could buy a plan through the state’s insurance exchange, even with a tax credit, Compton says it would cost them $300 a month for health insurance and an additional $76 for dental. That’s not including deductibles or co-pays.

“That’s a lot of money for us,” she says. “We’re trying to find a way to pay for it so that we can take care of ourselves. I want to be the best mom and wife I can be. It’s hard without the health care I need.”

Compton and her husband also have health concerns. She has low thyroid hormone and needs medication to supplement it. Her husband takes medication for ADHD. They only buy 20 of his pills at a time because it’s more expensive than her medication, about $150/month. He only takes it on weekdays, when he has to work. That cuts the cost of his pills to $78.

“My husband needs [his medication] to help him focus, organize, plan, and be productive. He didn’t have it for a couple of weeks, and he made some big mistakes at work,” she says.

They live off his income because Compton, who has worked as a paralegal, needs to be home to help manage the kids’ care. They’re absent from school a lot, she says. And they have “so many” doctor appointments.

She says July was terrifying. That’s when Congress was voting on plans that would repeal, or repeal and replace, Obamacare.

“I read their proposed bill. Actually read it,” she says, adding that the cutbacks to Medicaid were most concerning because her kids need it.

The idea that insurers could charge more or delay coverage if you have a pre-existing condition also scared her.

“If pre-existing conditions allow insurers to raise premiums or refuse to cover people, then people will die. I know it sounds dramatic, but it’s true, she says.”

Compton says she wants to see Congress work toward single-payer health care -- so-called Medicare for all.

“I would like Congress to acknowledge that health care is a right, not a privilege. So many of us are struggling just to live,” she says.

WebMD Health News Reviewed by Neha Pathak, MD on September 19, 2017

Sources

Julee Compton, mother, Spanaway, WA.

Julia Roberts, mother, business consultant, Atlanta.

Shannon Edgerton, mother, small-business owner, Queen Creek, AZ.

Kaiser Family Foundation: “Individual Insurance Market Performance in Early 2017.”

The Hill: “New York Extends ObamaCare Enrollment Deadline.”

News Release, America's Health Insurance Plans, Aug. 2, 2017.

Centers for Medicare & Medicaid Services: Fact Sheet, March 15, 2017.

National Center for Health Statistics: “Health Insurance Coverage.”

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