PORTLAND, Maine — Sharon Leahy-Lind was certain her new health insurance plan would pay for doctors outside Maine.
After all, she specifically asked about that when she called the federal marketplace to buy new health insurance. Her daughter went to college in Massachusetts and she needed a plan that would cover her there. The marketplace representative went over her options, assuring her that a $685-a-month Anthem Blue Cross Blue Shield plan did exactly what she needed it to do.
And when she got her new insurance card, it clearly said “multi-state” across the top. Obviously it covered her in multiple states.
Except that it didn’t.
“Multi-state” is a federal designation that means the plan is sold in several states, not that coverage extends across state lines.
Weeks after she bought her new insurance, Leahy-Lind — the former Maine Center for Disease Control division director who made headlines for publicizing document destruction at the CDC — found herself fighting two new battles: a pancreatic tumor that threatened her life and her insurance company, which would pay for care in Maine but not a specialist surgeon in Boston.
She was shocked, then angry.
“I have a master’s degree and multiple postgraduate courses within public health and here I got snookered,” Leahy-Lind said.
The Affordable Care Act now requires most Americans to have health insurance. In Maine, more people are buying it on their own, without a human resources department to explain benefits or point out potential pitfalls, like the multi-state insurance that isn’t good in multiple states.
Plans are misunderstood. Assumptions turn out to be wrong. Questions go unasked.
And even when everything is done right, problems sometimes arise.
Health insurance is like any other major purchase, experts say — buyer beware.
“You just cannot ask enough questions,” Maine Bureau of Insurance Superintendent Eric Cioppa said.
In Maine, most people receive health insurance through their job or through the government as part of Medicaid or Medicare. Plan choices tend to be limited, which also limits the risk of choosing wrong. And, at least in the case of employer-sponsored health insurance, there’s often a nearby person or a department responsible for shopping for a plan, dealing with questions and handling problems.
But more people are buying their own health insurance. Between 2013 and 2014, the number of Mainers covered by an individual insurance plan doubled, from about 32,000 to about 64,000.
Those Mainers have a dizzying array of plans and options to chose from, both on and off the federal marketplace (also known as an exchange). And although brokers, agents, insurance representatives, navigators, certified assistants, federal marketplace representatives and others can help, consumers are the ones ultimately responsible for assessing their needs, gauging a plan’s fit, asking the right questions and paying the bill. The pitfalls are many.
“And this is an annual event now. I mean, every year they’ve got to do this,” Cioppa said. “Subsidies are based on one plan, which you may or may not have. Networks change. You really can’t be passive anymore.”
Most individual plans for 2014 expire Dec. 31, even if they were bought partway through the year. Open enrollment runs from Nov. 15 to Feb. 15. That is the only time most consumers will be able to buy insurance, both on and off the federal marketplace, unless they lose their job, get married, have a baby or experience another life-changing event.
Leahy-Lind, 56, left her job at the CDC about a year ago. She had alleged that her bosses there ordered her to shred public documents and then harassed and discriminated against her when she refused.
She has since filed a whistle-blower lawsuit in federal court.
After leaving the CDC, Leahy-Lind went to work in real estate. She’d done the job before and knew it could pay the bills, even if it didn’t provide health insurance. She kept her CDC health insurance plan through the decades-old Consolidated Omnibus Budget Reconciliation Act, or COBRA. She had to pay the premiums — $1,250 a month — but she and her youngest daughter were covered.
Then, this summer, Leahy-Lind got a notice. Although open enrollment had closed, she could still sign up for individual insurance because she was using COBRA. She might be able to save money by buying her own insurance through the marketplace.
As long as the insurance was decent and her daughter would be covered at college in Massachusetts, she was happy to pay less. She called the toll-free number.
“A federal representative walked me through the whole process. . . . they said this is the same insurance you have now, only you have this multi-state plan and it’s a lot less money,” Leahy-Lind said.
The representative, she said, was clear: Her new insurance would pay for doctors in other states. In fact, she said, the plan cost a little more for that multi-state option.
Still, Leahy-Lind would be paying just $685 a month, almost half what she was under COBRA. Her deductibles and other out-of-pocket costs were higher than her old plan, so it made sense that her monthly premiums would be less than they were under COBRA.
She signed up.
“I thought I made a really good decision,” she said.
That feeling lasted just a few weeks. Her new insurance plan started July 1. At the end of the month, she noticed a lump on her neck. A friend who’d seen Leahy-Lind just the week before startled at her sudden weight loss. She got so suddenly and violently ill one day that she couldn’t make it out of the car before she threw up.
Doctors soon discovered a tumor on her pancreas. It has so far tested benign, but it’s still life-threatening, both because of its location and its type.
“There are three levels of potential malignancy and mine’s at the highest level,” she said. “So [the doctor] said we could leave it there and within a year either it’ll block my duct and I would die from complications or it would turn, from their perspective, into malignant, invasive pancreatic cancer.”
Leahy-Lind, who has worked in public health for nearly 20 years, started researching statistics and combing through medical journals. She found a doctor in Boston who specialized in her condition and she made an emergency appointment with him. He and others agreed she needed surgery, now. And the operation would not be easy.
Because of the tumor’s location at the head of her pancreas, it’s perilously close to invading other organs. The surgery — called a Whipple procedure — would have to take 40 percent of her pancreas, a portion of her small intestine and a section of her stomach. Recovery takes several weeks under the best of circumstances, several months when there are complications. If any cancer cells are found afterward, she’ll also have to undergo chemotherapy and radiation.
Massachusetts General Hospital offered a nationally recognized pancreatic center and a surgeon who specialized in Whipple surgery and pancreatic removal. She found statistics that showed her odds of survival were far better with a doctor experienced in the complex operation than with someone who didn’t do it as often.
Leahy-Lind expected her insurance company would approve the surgery without a problem. She had, after all, bought the multi-state plan.
But “multi-state” has nothing to do with coverage. It’s a federal designation for plans approved to be sold in several states.
“To say it could confuse consumers, I think, is an understatement,” Cioppa said. “Because the ‘multi-state’ plan we have in Maine is Anthem’s narrow network plan and it does not provide coverage out of state.”
As a narrow network, Anthem’s plan doesn’t even cover all hospitals within Maine, except in an emergency.
Experts say Anthem didn’t do anything wrong by offering the plan and it’s not responsible for calling it “multi-state.” But neither did Leahy-Lind do anything wrong when she believed the marketplace representative, they say. The representative was mistaken and apparently gave her the wrong information.
About 1,500 Mainers carry Anthem’s multi-state plan, according to the Maine Bureau of Insurance. No one knows how many of them bought the plan believing it would pay for doctors in other states.
Experts aren’t surprised by the confusion caused by multi-state plans that don’t work in multiple states. The name is clearly a problem, they said.
There are the other pitfalls.
Health insurance plans automatically renew for 2015 if consumers don’t cancel or sign up for a new plan. That automatic renewal can be good since consumers don’t have to do anything to stay insured.
But it can also be bad. Consumers may be saddled for a year with insurance that’s gotten more expensive, doesn’t meet their needs or isn’t their best option anymore.
“Some of the plans have changed, your plan might have changed,” said Andrea Irwin, legal and policy director for Consumers for Affordable Health Care, Maine’s designated Consumer Assistance Program. “And there’s so much in your life that can change: getting married, moving, having kids. Your health can change. There’s just so many different ways that your life may change in the course of these last six to eight months.”
Some plans pay for all hospitals in Maine while others, like Anthem, offer a narrow network that excludes some hospitals. Consumers can be in for a big surprise — in the form of a big bill — if they go to a hospital they assume is in-network and it’s not an emergency.
“I’m thinking of one person we heard from, a man whose wife had given birth,” Irwin said. “They had an Anthem plan and she had given birth at Mercy (Hospital in Portland) and was told it wouldn’t be covered.”
Some plans pay for all hospitals, but not all doctors. That’s meant some patients have surgery at an in-network hospital only to find out that their anesthesiologist, for example, wasn’t on the insurance company’s list of approved doctors.
Cioppa called that an “unreasonable expectation” on consumers, but he’s seen insurance companies refuse to pay for the doctor’s services when that happens.
“We’ve gone to bat in several circumstances,” he said.
Just as they have in-network and out-of-network doctors and hospitals, insurance plans have prescription drugs they will and won’t cover. And then there are drugs they’ll pay something toward, leaving consumers to pay the rest. Consumers have to peruse that drug list — called a formulary — to find out which medications are covered, but that list can be over 100 pages long.
“It’s gotten a lot more complicated,” Cioppa said.
Also complicated: paying for insurance.
Although consumers can opt to pay their monthly premiums with an automatic withdrawal from their bank account, experts say it doesn’t start the first month. The initial premium payment — the one that locks in the insurance — must be paid first, then automatic withdrawal can take over. It’s a detail that’s caused problems for some Mainers.
There is a 30- to 90-day grace period on most late health insurance payments, but not the first one. No initial payment means no insurance; the plan is immediately cancelled.
And while those consumers won’t have insurance, they will have something else: a fine. By law, most Americans without insurance currently face a penalty of up to $285 per family or 1 percent of household income, whichever is greater.
For those who need help paying for insurance, subsidies are available. But those have caused confusion, too.
Federal subsidies are available for people who earn between 100 percent and 400 percent of the federal poverty level. Special credits are also available to lower out-of-pocket insurance expenses — such as co-pays at the doctor’s office — for people who earn between 100 percent and 250 percent of the federal poverty level.
Those special credits have caught some Mainers off guard.
At Maine Community Health Options, a health insurance co-op in Lewiston, some consumers signed up for plans with a higher monthly cost because those plans had lower co-pays. But they didn’t realize they qualified for special credits, which lowered co-pays for them. They didn’t need to pay more every month to pay less when they visit the doctor’s office.
The insurance company caught some sign-ups in time to urge the consumers to change plans, but a few people paid extra every month for nothing.
“The difference [between plans] is very, very subtle,” said Michael Gendreau, director of outreach, education and communications.
So how can Mainers avoid the pitfalls?
First, experts say, don’t automatically re-enroll. Consumers should look at what they need for health care, what they have now for insurance, and what plans are available to them starting Nov. 15.
Those who got caught in the multi-state confusion might want to switch to a plan that covers them out of state, for example. Those who liked only certain doctors and hospitals might find what they need in a narrow network.
“It pays for them, even if they’re very, very happy with what they have, it pays for them to go and take a look at everything,” said Janice Daku, Navigator Consortium Project director at Western Maine Community Action, one of two Maine groups that received federal money to help Mainers sign up for health insurance.
Even though a plan may look the same for 2015, there can be slight but important changes, including which medications are covered, how much patients must pay when they see the doctor and which hospitals are favored.
“Our message to consumers: Look at the plan you currently have, make sure you understand your benefits, costs and provider network coverage, and then compare what you have to the other plans,” said Anthem spokesman Rory Sheehan.
After that, experts say, consumers should ask questions. Lots and lots of questions. And never assume, even if the answer seems obvious.
Although brokers, agents, insurance company representatives, navigators, certified assistants and federal marketplace representatives are all trained to answer questions, individuals can have old information or be misinformed. Experts say consumers should consider talking to more than one trusted person and double check important plan details — such as which hospitals are covered and whether the plan pays for doctors outside Maine — directly with the insurance company.
Experts also advise Mainers to read the fine print in any plan they’re considering. Though that’s not always so easy.
“Old-school people like me, where you’re used to having hard copies of things and benefit packages that you keep in your little manila envelope in a safe place, they don’t have that anymore,” Leahy-Lind said. “They just send you these [website] links.”
Experts say Mainers should ask for three things when looking at a plan: the certificate of coverage (fine print), summary of benefits and coverage (lists what the plan covers and out-of-pocket costs) and the prescription drug formulary (tells which medications will be covered). The Maine Bureau of Insurance expects insurance companies to provide paper copies of those upon request.
“If anyone ever has trouble getting that, they can call us or the Bureau of Insurance,” said Irwin at Consumers for Affordable Health Care. “Or if anyone has trouble understanding it, we would also help them do that. I know sometimes it’s not written in consumer-friendly language.”
Once consumers have the information, experts say, they should take time to think about their options. They shouldn’t feel rushed, even if they’ve been on the phone with a marketplace representative for an hour or spent the afternoon going through the sign-up process with a navigator.
“Very rarely does anyone say, ‘Oh, that’s the plan I want right there’ while they’re there for their appointment. They need to process and think about it, and we encourage that. Think about your own medical needs, what drugs you take on a regular basis, what your chronic health conditions might be. For anyone else that you’re going to have covered in the plan, think about their circumstances and their health,” said Daku. “Take your time.”
But sometimes consumers can do everything right and still run into problems. When that happens, Consumers for Affordable Health Care and the Maine Bureau of Insurance take complaints and work to resolve issues, including denied claims and surprise out-of-network medical bills.
Consumers also have the right to appeal decisions made by their insurance company.
Generally, consumers can appeal twice to their insurance company. If both are denied, they can ask the Maine Bureau of Insurance to pursue an external review before an independent review organization. For designated “multi-state”plans, U.S. Office of Personnel Management oversees the external review, not the Maine Bureau of Insurance.
Consumers can also take their case to court.
Mainers can get help with appeals from Consumers for Affordable Health Care. Since 2011, it has has recovered $300,000 for Mainers whose health insurance claims had been denied. Most of it was recovered on appeal.
Leahy-Lind is appealing her insurance company’s decision on the grounds that its network of doctors and hospitals isn’t adequate for her condition. She said Anthem will pay for her to have surgery in Portland, but not in Boston where her specialist practices.
In the meantime, she has has committed to having the surgery in Boston at the beginning of October. It will likely cost hundreds of thousands of dollars, money she can’t afford. Then there will be another surgery to remove the tumor in her neck that turned out to be unrelated to her pancreas. And after that, a lifetime of tests and scans to watch for recurrence.
She calls herself “extremely lucky” that her tumor was caught earlier than most. She feels less lucky with her insurance plan.
“You’ve got to know what you have before you buy it. Question everything,” she said. “I don’t think the people who sold it to me even knew what it meant.”