Carol Marley wants everyone to know what a life-threatening cancer diagnosis looks like in America today.

Yes, it’s the chemotherapy that leaves you weak and unable to walk across the room. Yes, it’s the litany of tests and treatments – the CT scans and MRIs and biopsies and endoscopies and surgeries and blood draws and radiation and doctor visits. Yes, it’s envisioning your funeral, which torments you day and night.

But none of these is her most gnawing, ever present concern.

That would be the convoluted medical bills that fill multiple binders, depleted savings accounts that destroy early retirement plans and so, so many phone calls with insurers and medical providers.

“I have faith in God that my cancer is not going to kill me,” says Marley, who lives in Round Rock, Texas. “I have a harder time believing that this is gonna get straightened out and isn’t gonna harm us financially. That’s the leap of faith that I’m struggling with.”

Coping with the financial fallout of cancer is exhausting — and nerve-wracking. But the worst part, Marley says, is that it’s unexpected.

When she was diagnosed with adenocarcinoma of the pancreas head in July, she didn’t anticipate so many bills, or so many billing mistakes. After all, she is a hospital nurse with good private insurance that has allowed her access to high-quality doctors and hospitals.

Randall Marley, a computer systems engineer, says he frequently comes home from work to find his wife feeling unwell and frustrated about having spent a precious day of her recovery making phone calls to understand and dispute medical bills. One recent night she was in tears and “emotionally at a breaking point,” he says. “The hardest part of this is seeing the toll it’s taken on my wife.”

Stress-inducing bills accumulate

More than 42 percent of the 9.5 million people diagnosed with cancer from 2000 to 2012 drained their life’s assets within two years, according to a study published last year in the American Journal of Medicine. Cancer patients are 2.65 times more likely to file for bankruptcy than those without cancer, and bankruptcy puts them at a higher risk for early death, according to research.

But those statistics don’t convey the daily misery of a patient with a life-threatening disease trying to navigate the convoluted financial demands of the U.S. health care system while simultaneously facing a roller coaster of treatment and healing.

Stephanie Wheeler, a professor at the University of North Carolina at Chapel Hill, said the number of bills coming from different providers can be overwhelming.

“It’s oftentimes multiple different bills that are rolling in over a period of several months and sometimes years,” says Wheeler, who has conducted survey research with metastatic cancer patients. “As those bills start to accumulate, it can be very stress inducing.”

Given that many patients can’t work during treatment, these bills may force even relatively well-to-do cancer patients to take out second mortgages, spend college savings or worry about leaving debt behind for their families, Wheeler says.

Carol Marley is a slight woman who dotes on her two dogs and is involved in her church. Her 88-year-old father, who has dementia, had moved in a few years earlier. She and her husband, Randall, pride themselves on living frugally. They pay their credit card off every month and don’t have car payments.

Carol and her daughter, June Marley, who is a second-year college student, have health insurance through Carol’s employer, Ascension Health, a large faith-based health care system with facilities across the nation. Carol’s husband has separate insurance through his job.

They were hoping to retire early, buy an RV and drive around the country. Instead, they see their meticulous plans disappearing, even if Carol recovers.

Their high-deductible insurance policy meant they had to spend $6,000 before their insurance started covering her treatment expenses. They hit their annual out-of-pocket maximum of $10,000 well before the year was over.

But Carol says she was prepared for that. “What I didn’t anticipate is the knock-down, drag-out fight that I would have to engage in to get people to see there were errors and address it.”

Since she’s unable to work, the family lost her nursing salary.

“Money is not coming in, and it’s going out by the thousands,” she says.

From nurse to patient

Carol had treated cancer patients before. She had seen them come in with unexplained aches and leave with devastating diagnoses. Now it was her turn.

Though she didn’t recognize it at the time, her symptoms were textbook. Fatigue. Back pain. Weight loss. In July, doctors told her she had pancreatic cancer.

Her first thought was that she was going to die. One nurse friend asked if she had her affairs in order. That’s because pancreatic cancer is usually discovered too late. Just 9 percent of patients are alive five years after diagnosis, compared with 90 percent of breast cancer patients.

Carol knew she was lucky. Hers hadn’t spread. She might be able to undergo surgery. But first, four months of chemotherapy and five weeks of radiation.

The chemotherapy — seven or eight rounds, she can’t quite remember — drained her. “I couldn’t put words together in my head,” she says. She had muscle spasms and developed fevers that landed her in the emergency room.

As she became weaker, Carol realized she could no longer care for her father at home. On a recent morning in early January, she sat down with a nurse from a memory-care facility where a space had become available. Holding back tears, Carol told the nurse she knew this day would come. “I didn’t think it would be so soon, and I didn’t know under these circumstances.”

Different insurers lead to different bills

Later that same day, Carol’s energy was up. She adjusted the colorful scarf on her head, turned on her computer and pulled out a pen. Some days she spends hours trying to clarify and fix medical bills. “But I don’t do that frequently because it is so fruitless and it is stressful,” she said.

Often, she is just trying to figure out what different bills mean. “Even as a nurse, I feel like it’s impossible to understand,” she said. “I can’t make heads or tails of it.”

Sometimes there are errors.

Part of the problem, she contends, is that one insurance company covers visits with Ascension providers and hospitals and another company covers pharmacy claims, specialty drugs and providers outside Ascension’s network. Some of the bills, including a $1,400 one from an ER visit — were sent to the wrong insurer, she says.

Carol cites other issues. An $18,400 chemotherapy bill was submitted with missing information and then denied because it arrived late. An $870 MRI bill was denied because the provider said there was no pre-authorization.

“It’s not any one individual. It’s not any one system or provider,” she says. “The whole system is messed up. … There’s no recourse for me except to just keep making phone calls.”

On this particular afternoon, Carol has a long list of calls to make. One to figure out why she couldn’t access her insurance claims online. Another to a medical provider that urged her to pay $380, even though it acknowledged that it owed her about $80 of that total.

Someone who answers the phone suggests again that Carol pay the entire amount. “Once it’s posted to your account and it goes through, we would send you a check,” the woman says.

Carol shakes her head. “I’m sure y’all are fine people over there, but I’m not trusting a refund to come,” she responds, reflecting on her experience as a consumer of cancer care. “The problem is, they want their money and they are going to get it one way or the other.”

As for her hospital bills, Ascension declined to comment, citing protected health information. But spokesman Nick Ragone said, “The matter at issue was favorably resolved.”

He didn’t say which issue was resolved.

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation and is not affiliated with Kaiser Permanente.

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The leaders of seven drug industry giants were forced to defend their industry’s prices and business practices on Capitol Hill on Tuesday, as lawmakers criticized them for failing to put patients before profits.

“Prescription drugs did not become outrageously expensive by accident,” said Sen. Ron Wyden, D-Ore. “Drug prices are astronomically high because that’s where pharmaceutical companies and their investors want them.”

The pharmaceutical company leaders, testifying at a hearing of the Senate Finance Committee, acknowledged that their prices are high for many patients, but they deflected blame onto the insurance industry, government and middlemen known as pharmacy benefit managers.

They each acknowledged briefly that they have some role to play in helping lower drug prices. But they defended their industry by touting their multibillion-dollar investments in research and development and praising advances in treatments for cancer, hepatitis C, schizophrenia and autoimmune diseases.

“Last year, Janssen invested $8.4 billion globally in research and development, making Janssen one of the top research and development investors in any industry anywhere in the world,” said Jennifer Taubert, worldwide chairman of pharmaceuticals for Johnson & Johnson, which owns Janssen.

The drug industry leaders also pointed out that the list prices they set for drugs are not what they are actually paid by insurance companies or pharmacy benefit managers, the middlemen that negotiate discounts and rebates on behalf of employers or insurers, which include companies like CVS Caremark and Express Scripts.

“We want these rebates, which lower net prices, to benefit patients,” said Olivier Brandicourt, CEO of Sanofi, which makes Lantus, one of the highest priced brands of insulin, whose list price has risen from $244 to $431 since 2013, according to the committee.

“Unfortunately, under the current system, savings from rebates are not consistently passed through to patients in the form of lower deductibles, co-payments or coinsurance amounts,” Brandicourt said in testimony prepared for the hearing.

According to investment research firm SSR Health, the net price of Lantus has declined 28 percent over the last two years because of those discounts and rebates.

“Addressing list prices alone will not be sufficient for solving the problem of patients’ out-of-pocket costs,” Brandicourt said.

But the Senators had little patience for those arguments.

“For a patient taking a drug that has no competition, the list price becomes very important,” said Sen. Chuck Grassley, R-Iowa, the committee’s chairman. “I’ve heard about people skipping doses of their prescription drugs to make them last until the next paycheck.”

Wyden piled on.

“I think you and others in the industry are stonewalling on the key issue, which is actually lowering list prices,” he said. “Lowering those list prices is the easiest way for consumers to pay less at the pharmacy counter.”

Many patients have to pay the full price for a prescription drug until they meet their deductible, and others have payments that are calculated as a percentage of the list price. So higher list prices often translate to higher costs at the pharmacy counter, even when pharmacy benefit managers and insurers have negotiated discounts.

Several of the drug company leaders said they support a Trump administration proposal to change the current system in which drug prices are set using secret rebates negotiated by pharmacy benefit managers.

The change would make those rebates illegal and force pharmacy benefit managers to instead negotiate discounts upfront so that people will get the discounts at the pharmacy counter even if they haven’t yet met their deductible.

Several of the CEOs, under pressure from Grassley, said they would lower their list prices if that proposal is finalized and the rule applied to both government and commercial prescription drug plans.

“It is our very clear intention that we will not keep a single dollar from these rebates. We will try to move every single penny to the patients,” said Albert Bourla, CEO of Pfizer.

Taubert of Johnson & Johnson said the company’s final price would depend on whether additional fees were imposed by pharmacy benefit managers.

However, they said they don’t want to see the government negotiating drug prices directly through Medicare, a proposal that has been brought forward by Democrats and was originally embraced by President Trump.

“The government should not directly control the price of medicines either through federal government price controls or worse, outsourcing prices to other countries,” Brandicourt said.

Even as the companies protest that the high list prices of their products don’t reflect what they actually make on those products, drugmakers have consistently enjoyed some of the highest profit margins of any industry.

Pharmaceutical manufacturers’ profit margins have exceeded 26 percent for the last three years and 22 percent for the past 10 years, according to a presentation by CVS Health that cited Macrotrends.net as its source.

The company executives were not supportive of another Trump proposal to tie the price that Medicare pays for drugs to the prices paid in other developed countries.

“We need an American solution to this American challenge,” said Taubert of Johnson & Johnson’s Janssen unit.

Wyden grilled Richard Gonzalez, CEO of AbbVie, about why his company’s drugs cost on average 40 percent less in Germany and France than in the United States. (AbbVie makes the drug Humira, which generates about $18 billion in revenue for the company each year.)

“You’ve got a double standard,” Wyden said. “You’re willing to sit by and hose the American consumer and give the breaks to people overseas.”

Gonzalez acknowledged that the company makes a profit in those countries, even with the lower prices, but warned of dire consequence if U.S. prices fell to those levels.

“If a market the size of the U.S. were to collapse to the lower end of that pricing model, I can just tell you that AbbVie would not be able to invest in the level of R & D that it invests in today,” Gonzalez said.

In response to a question from Grassley, all the CEOs said they consider the risk of negative public opinion when they decide on their list prices. The Trump administration has proposed requiring companies to include their drugs’ list prices in all their direct-to-consumer advertising, a plan the companies have resisted.

They also said they consider the reaction of federal officials to their price announcements.

“The federal government is a very key aspect of our deliberations,” said Pascal Soriot of AstraZeneca, an answer echoed by all seven industry leaders.

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Laura Lucero Y Ruiz De Gutierrez has a heart condition and fibromyalgia and is at high risk of developing diabetes. She has health insurance through her husband’s job. But between the $800 monthly premium for the couple’s coverage and the $2,100 deductible she has to pay down before insurance starts picking up the tab, she doesn’t feel she can afford to go to the doctor when she needs to.

She hopes that this may soon change. Identical bills proposed in recent weeks in the New Mexico House and Senate would make Gutierrez eligible to buy into a public health plan modeled on the Medicaid program, with funding support from the state of New Mexico. She could receive state-funded assistance via the program that would save her hundreds of dollars a month on premiums.

“Medicare for all” – often described as a national, single-payer health system built on the Medicare model — has become a rallying cry for some progressive Democrats. Meanwhile, New Mexico is one of several states looking at offering consumers a different type of government-sponsored plan to provide a health care option that’s more affordable than current options.

These states’ proposals are often referred to as “Medicaid buy-in” plans because, typically, they would offer benefits similar to what is available through Medicaid, the state-federal health plan for people who have low incomes.

The proposals under consideration vary from state to state. Variables include eligibility criteria, how they might be funded and whether they would be offered on the Affordable Care Act’s insurance exchange.

And depending on how they structure their plan, states may have to get approval from the federal government to move ahead.

States that are interested in a buy-in plan typically are considering taking advantage of the Medicaid program’s provider networks and reimbursement rates. Those payment rates generally are lower than for Medicare and for commercial plans.

That may help keep costs down, though in some states it also means the network of doctors would likely not be as large as that found with Medicare or some commercial plans.

“Medicare-for-all is not going to happen legislatively in the next couple years,” says Heather Howard, who directs Princeton University’s State Health and Value Strategies program and is working closely with some of the states. “In the meantime, states are saying, ‘What about “Medicaid-for-more”?’ “

In New Mexico, the buy-in plan would be similar to the state’s Medicaid program. It would be offered outside the exchange and would not require federal approval to implement. The state would provide financial assistance to help people with lower incomes buy into it.

A report commissioned by New Mexico projected that up to 16,000 people would enroll in a program like the one originally proposed in the state’s bills and that their premiums would be 15 to 28 percent lower than plans sold on the individual market.

New Mexico Gov. Michelle Lujan Grisham favors a Medicaid buy-in option. She doesn’t have a position on the current bill, but she is following it closely, says Nora Sackett, the governor’s deputy press secretary.

In addition to the governor’s and lawmakers’ interest, other stakeholders have been deeply involved, increasing the odds of success, Howard says.

Lawmakers in Colorado, Oregon, Washington and Minnesota are among others exploring similar options, says Howard. Nevada lawmakers passed a bill last year that would have set up a Medicaid buy-in plan, but the Republican governor vetoed it.

“The proposals take on different flavors depending on the state” and what officials are trying to accomplish, she says, whether it’s increasing the number of people with insurance, making coverage more affordable or helping states avoid having “bare” counties where no marketplace plans are offered.

New Mexico’s bill would target individuals who aren’t eligible for Medicaid or Medicare and those who can’t get the Affordable Care Act’s premium subsidies because their incomes are above 400 percent of the federal poverty level (about $50,000 for one person or $103,000 for a family of four). The plan would also be available to state residents whose immigration status in the U.S. is undocumented.

And the measure would help people like Gutierrez who are vulnerable to the ACA’s so-called family glitch. Her husband’s $100 monthly premium for single coverage through his employer plan is considered affordable under the law because it costs less than 9.86 percent of their family’s income of about $46,000 a year. That makes her ineligible for premium subsidies on the exchange, even though the $800 premium for the two of them through her husband’s employer plan far exceeds that affordability percentage. Their three children already have Medicaid coverage.

“Right now, I pay to have the health care, but I can’t afford to use it,” says Gutierrez.

The bill would provide financial assistance from the state, with premiums and cost sharing for people whose incomes are less than 200 percent of the federal poverty level, or $60,340 for a family of five. The new coverage would take effect by January 2021.

Gutierrez, whose family lives in Albuquerque, would be eligible for financial assistance to help her buy into the Medicaid-like plan, while her husband stays on his employer plan. Because their $46,000 annual income is just above 150 percent of the federal poverty level, her monthly premium would likely be about $160 per month for a comprehensive plan with a $150 deductible, according to estimates by Manatt Health, which did the original state analyses of buy-in options that were published before the bills were introduced in January.

New Mexico has high levels of poverty, and 40 percent of New Mexico residents are already enrolled in the state’s Medicaid program, compared with about 23 percent nationwide.

“It’s the cornerstone” of our health care system, says Colin Baillio, director of policy and communication at Health Action New Mexico, an advocacy group. The legislation would use “those levers that Medicaid has to provide comprehensive coverage and a comprehensive provider network.”

The bills were passed by two legislative committees this month, with instructions for further study to examine expanding the buy-in plan to more groups. They now move to two other legislative committees for consideration, Baillio says.

And though hospitals and other health care providers would be reimbursed at Medicaid rates — typically lower than those for commercial plans — to the extent that people who are uninsured enroll in the new plan, some providers say they stand to gain financially.

“We’re obviously very supportive of anything that expands coverage,” says Jeff Dye, president of the New Mexico Hospital Association. “It’s the issue of getting some payment versus no payment for services rendered.”

If the Medicaid buy-in bill passes, Blanca and her husband, Hugo, could have health insurance for the first time since they moved to New Mexico 14 years ago. The couple and their oldest son, now 18, are undocumented immigrants from Mexico. (NPR is not using their last names, to protect the family’s privacy.) Their two younger children, who were born in the United States, are enrolled in Medicaid.

Hugo works as a plumber, and Blanca is studying early childhood development at a community college near their home in Albuquerque. Because they are unauthorized immigrants, they’re not permitted to buy health insurance on the ACA exchanges, even if they’re willing to pay the full price.

So like many people without insurance, they wait until they’re really sick before seeking help. When Blanca developed pneumonia a few years ago, the waiting lists for an appointment at community clinics that would see her without insurance were long. Finally, when she could no longer breathe comfortably, she went to the emergency department.

“It would bring us peace of mind not having to worry about our health care situation,” Blanca says through an interpreter.

Providing health care for residents who lack proper immigration status is “an underlying issue with many states that are considering a Medicaid buy-in,” said Chiquita Brooks-LaSure, managing director at Manatt Health, who co-authored the reports evaluating Medicaid buy-in options for New Mexico.

The New Mexico bill also would provide some relief for Leah Steimel’s family. Neither she nor her husband has employer-sponsored coverage, and with a family income of about $100,000, they don’t qualify for tax credits that would reduce their ACA premiums. They now pay more than $1,900 per month for a silver-level plan with a $10,000 deductible to cover themselves and two of their kids (the third is older than 26).

Buying into a Medicaid-like plan would be tempting, says Steimel, who works as a community health consultant with some of the groups advocating for the buy-in. Sure, she says, she does wonder if the Medicaid plan would be as easy to use as a regular commercial plan and if it would give the family access to as many providers.

“But being able to pay into something that would reduce by even a third what I’m paying now — I’d love that,” she says.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation and is not affiliated with Kaiser Permanente. Michelle Andrews is on Twitter: @mandrews110.

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Bernie Sanders is back, but one of his signature policies never left.

In 2015, he introduced Medicare-for-all to many Democrats for the first time. Since Sanders’ first run for president, that type of single-payer health care system has become a mainstream Democratic proposal.

Last week, Sanders launched his second presidential campaign, amid a field of presidential candidates who are trying to figure out how to position themselves around the policy. Trying to stand out from the pack, though — especially on health care — poses a problem: Differentiating yourself means getting into the details, and getting into the details can turn voters off.

Over the last few weeks, candidates have been working to show voters the daylight between their respective health care proposals.

New Jersey Sen. Cory Booker has stressed that he supports Medicare-for-all, and that he wants private insurers to have a role in that system. “Even countries that have vast access to publicly offered health care still have private health care,” he told reporters this month.

Minnesota Sen. Amy Klobuchar says she wants a public option, in the form of letting people buy into Medicaid. As for single-payer health care, she says it’s a possibility in the long-term.

Ohio Sen. Sherrod Brown, who says he’s still debating a run, also wants a sort of public option, but only for people above age 50, whom he would allow to buy in to Medicare. “I think Medicare-for-all will take a while, and it’s difficult,” he told CNN’s State of the Union.

Long story short: In a huge Democratic presidential field, health care is the first issue where candidates are really differentiating themselves.

Bumper sticker politics

“Health reform is always more popular as a bumper sticker than as a piece of legislation,” said Larry Levitt, senior vice president for health reform at the Kaiser Family Foundation.

He points to both the Obamacare and the Obamacare repeal efforts as examples — some ideas behind Obamacare, like insuring pre-existing conditions, were popular. But other aspects that proponents said were necessary to make it work, like the individual mandate, infuriated some voters, helping propel Republicans to big wins in 2010.

Likewise, the Obamacare repeal effort fired up many Republican voters, but the implications of the various repeal plans — fewer people with insurance, lack of protections for pre-existing conditions — ultimately helped doom the effort.

Medicare-for-all may prove to be yet another example of this trend, according to Levitt.

“There’s a huge political benefit for candidates to be in favor of the idea of Medicare-for-all in a primary,” he said. “But the more the details get filled in, the less popular that idea will be.”

California Sen. Kamala Harris may be the first to face a big lesson in this. At a recent CNN town hall, host Jake Tapper asked her about her support of Sanders’ Medicare-for-all bill, which he said would “totally eliminate private insurance.”

(A quick note here: Sanders’ plan does not totally eliminate private insurance, but it would vastly diminish its role.)

Harris said that she would eliminate private insurance — but after a quick backlash, the next day clarified, with a campaign spokesman saying she also supports more incremental health care overhauls.

Polling also shows how tricky selling Medicare-for-all could be once the details come into play. A January poll from Kaiser shows that nearly 7 in 10 Americans like Medicare-for-all if they hear it will eliminate premiums and out-of-pocket costs. But that support drops to around 4 in 10 if people hear it will mean higher taxes.

Both of those things could be true of a Medicare-for-all system. But trying to sell even this basic trade-off on the campaign trail — especially this early — is tough.

At the other, more moderate end of the spectrum, Klobuchar said she’s for the broad goal of “universal health care,” and did get specific on her support of a public option. But when it comes to Medicare-for-all, she remained vague, saying it could be a possibility. Voters will almost certainly try to pin her down more on that in coming months, but for now her answer may help keep her from alienating some more liberal voters.

For many candidates, keeping health care rhetoric broad might be a smart move for now, says Nadeam Elshami, former chief of staff to House Speaker Nancy Pelosi.

“It’s okay for a candidate to say, ‘Look: This is generally what I believe in. But I’m willing to hear first and then get into specifics later, after I have a deeper discussion of this issue,'” he said.

The “socialist” threat

Progressive health care overhauls will also likely feed into one of President Trump’s main attack lines: labeling Democrats as “socialists” as a way of painting them as extreme.

“It’s a surprising development that 10 years after the passage of the Affordable Care Act and after a massive political backlash against it, and a huge effort to defend it, Democrats are in there immediately swerving so hard to an even greater government role for health care,” said Michael Steel, a Republican strategist who worked for former House Speaker John Boehner and Jeb Bush’s 2016 campaign.

Republicans know political backlash well — the backlash to their repeal efforts culminated in the GOP losing the House in 2018. Whatever criticism Trump throws Democrats’ way on health care for 2020, they will likely counter by asking him if he has his own alternative to Obamacare, having failed to fully repeal it.

Until then, Democrats will be doing similar calculations on both health care and a variety of other issues: weighing sweeping, progressive ideas that the president could try to label as “socialist” against incremental policies that might not excite liberal voters — and deciding which choice is most likely to get a Democrat into office.

Voters want sweeping health care changes …maybe

A basic tension underlies Democratic plans to overhauls the health care system: Only 1 in 3 Americans rate health care in the U.S. as “excellent” or “good,” according to Gallup. But at the same time, a large majority — 7 in 10 — view their own personal health care as “excellent” or “good.”

Which is to say, it’s easy to see how voters might want the system massively reformed. In addition, incremental changes that don’t go as far as Medicare-for-all might particularly infuriate progressive voters.

But at the same time, voters will likely bristle if that reform threatens to change their own health coverage, as some major health care overhauls, like Medicare-for-all, might do.

“There is a reason that President Obama’s signature promise on Obamacare was ‘If you like your plan, you can keep it,'” Steel said.

That promise proved untrue — some Americans saw their health care plans canceled under the new Obamacare rules, and Politifact named Obama’s statement the “lie of the year” in 2013.

Should a Democratic candidate’s health care proposal similarly threaten people’s current health plans, it’s a safe bet that it will become a major Republican line of attack.

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