Archive 2018

Cancer Complications

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.

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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.

After Carol Marley was diagnosed with pancreatic cancer last July, she worried what it would mean for her family, including her 88-year-old father with dementia.

Anna Gorman/KHN

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.

Tips for a Healthy Life

Making the changes for a healthier lifestyle is a gradual process, contrary to popular belief. New Year’s resolutions rarely result in completely new healthy you. Instead, the move toward a better health is often a gradual transformation that starts with a decision and moves forward with education and effort. Some healthy habits are common sense. Others are counter-intuitive because of the dissonant nature of our modern world. It takes time to get the hang of it, especially if you have not been living a wholesome life before. And there are so many different things that we can do for better health and wellbeing that advice can become confusing or just plain overwhelming. Beyond this, some lifestyle changes are simply more practical than others. These healthy living tips are ranked by practicality and expense, with number ten requiring more effort and number one being the absolute easiest change to make. Some of these healthy tips are simple, free and easy. Others may be very difficult depending on your circumstances, but worth their effort in gold for the payback you will receive in health, longevity and quality of life.

1) Do A Job You Love

love your jobSome healthy living choices don’t involve preventing possible harm as much as improving the quality of your life. How do you feel when you are at work? Are you happy? Do you have a sense of accomplishment or fulfillment? Or do you dread the moment your foot crosses the threshold and the hours of your life that belong to others? Most Americans spend the largest portion of their waking hours working at their jobs, preparing for work, or driving to and from work. All these hours are spent just to pay for the place where they rest their heads for the 8 hours and start again. Many go from a hectic work life to a hectic home-life with literally no time for themselves. When put in this perspective, is it not important to ensure that the largest part of your waking day, your working hours, involve doing something that you love?

How to start: If you are not happy on your current career path, consider what you would rather be doing. Does it involve gaining more education? Then go back to school. It’s never to late to learn. Learning is also healthy for the brain at any age. Recent research shows that learning can greatly improve brain function, even in the elderly. If you like what you are doing, but just not who you are doing it for, consider finding a different employer or even going into business for yourself. A study by the Pew Research Center shows that for the most part, job satisfaction is higher among the self-employed, even when they work more hours and make less money.

Practicality: Making a change of this magnitude is definitely complicated. It takes a lot of work to change jobs and an almost herculean effort to gain a higher education while working full time. This falls into the category of wanting it more than you mind the inconvenience.

Expense: This can be one of the most expensive, or most profitable changes that you can make in your life depending on the circumstances. Yet financial gain is not the point of this tip. The point is that money can’t buy you happiness, but doing what you love every day is a way to guarantee it.

2) Stay Home When You’re Sick

sickThis tip will not only benefit you, it will benefit others around you as well. Infectious diseases are just that-infectious. When you go to work or school sick, you not only risk worsening your own condition, but also spreading it to others. Influenza and pneumonia are among the ten leading causes of death in America. Every year, the flu virus spreads like wildfire through schools and offices. This has the sad result of multiplying lost workdays or schooldays exponentially, rather than simply allowing the time for one valuable employee or student to recover properly.

How to start: Develop a great relationship with your employer and don’t skip school when you aren’t sick. Save those days for when you are. Those with good work/school attendance records are less likely to find themselves in the bad position of making an appearance when contagious. If you are an employer, respect your employees’ sick days. Some will naturally have more than others, but punishing an employee for absenteeism isn’t worth catching what they have or spreading it to the rest of your workforce.

Practicality: This is a tradeoff. It’s more practical for employers to lose a little bit of labor that risk their entire workforce. As far as losing money without sick leave, you will recover faster if you rest while you are ill, resulting in less work lost overall.

Expense: There is no denying that it is expensive to lose days of work to illness. Negotiate with your employer for sick leave, and if this cannot be accommodated with your current job, save up for the unexpected. You are virtually guaranteed to face sickness at one time or another, whether contagious or not. This should be a part of your budget just like groceries or gas.

3) Reduce Stress

stressA little stress is good. It gives your life excitement. Too much of the wrong stress however can be downright deadly.

Here’s how excess stress can harm your health:

  • decrease in immune system function – Stress lowers the production of natural killer cells and seriously depletes T-cells, both of which kill infections and cancer
  • damage to blood vessels and heart – Stress constricts blood vessels and causes faster heartbeat, thus increasing blood pressure
  • weight gain – Stress causes the release of cortisol which triggers overeating and storage of fat

How to start: Foster healthy connections with other people. If a situation is causing you stress and you can’t solve it alone, don’t be afraid to reach out to others for help. Do not ignore your problems. Confront them in a positive way. Meditate. Meditation does not involve sitting cross-legged and humming unless you want it to. There are many great ways to meditate. Sitting quietly by a lake or reading poetry can be just as beneficial as doing power yoga.

Practicality: Implementing these changes can be very difficult. The problem with making these changes is that it involves addressing life relationships, problems at work and personal habits. It takes bravery to confront the things that cause us stress in a productive way. It can help to seek professional help if stress is severe or life problems cannot be handled individually.

Expense: This can go either way. If handling stress involves changing jobs, it can be very expensive. If counseling is needed, insurance may absorb the costs, but perhaps not all of them. Some life changes, such as meditating and spending more time on things you enjoy are easy and free. Soak up the good moments. Life is for living well.