Photo illustration by Robert Hood / Fred Hutch News Service
After being diagnosed and treated for breast cancer three separate times, Liza Bernstein, 51, of Los Angeles has her life, her family and friends, her hopes and dreams, her art and a renewed sense of purpose – but not much else.
The digital health consultant and patient advocate has no home, no savings, no health insurance (save Medicaid) and no credit thanks to devastating bills from 22 years of scans, surgeries, energy-sapping treatments, insurance premiums, follow-up visits, complications and breast reconstruction, which she has yet to finish due to cost.
“I’m not technically bankrupt as I didn’t file – I couldn’t afford the fees at the time – but I’ve been housesitting, pet-sitting, and couch surfing for the last few years,” she said. “I have no home. I’ve spent all my savings. I sold most of my stuff and put the rest in storage. I’ve been in extreme survival mode since 2012, when I had to leave my apartment.”
Bernstein describes her situation as “precarious” and says without the help of family and friends, she would not be here.
As jarring as it sounds, though, she may actually be one of the lucky ones.
A new study conducted by researchers at the Fred Hutchinson Cancer Research Center has found that the financial toxicity resulting from the high cost of cancer care is almost as deadly as cancer itself.
“It varies from cancer to cancer, but for those who are in a bankruptcy situation – and about 3 percent of cancer patients go bankrupt – the risk of dying is just very, very high,” said lead author Dr. Scott Ramsey, director of the Hutchinson Institute for Cancer Outcomes Research, or HICOR.
Photo by Robert Hood / Fred Hutch News Service
A deadly toll
Ramsey and colleagues linked patient data from the Western Washington Cancer Surveillance System (part of the national SEER cancer registry) with federal bankruptcy records to see how bankruptcy affected patients’ survival.
Bankruptcies are a proxy of sorts for cancer’s heavy financial toll; since filings are tracked and measurable, researchers can use them to determine how skyrocketing cancer costs impact society. In a watershed study published in 2013, Ramsey found that cancer patients, on average, were about 2.5 times more likely to declare bankruptcy as those without cancer.
This latest study, published Monday in Journal of Clinical Oncology, showed that cancer patients who go bankrupt are nearly 80 percent more likely to die than patients who don’t, and some cancers had significantly higher mortality rates. Prostate cancer patients who filed for bankruptcy were almost twice as likely to die; bankrupt colorectal cancer patients were 2.5 times more likely to die as those not done in by debt.
“That blows away the benefits of many, if not most, treatments,” said Ramsey, an internist and health economist who launched HICOR in 2013 to help reduce the human and economic burden of cancer. “To me, it’s one thing if you go bankrupt. Financially, you’re really in bad shape but you come out of it with your cancer treated. But if it actually is a double hit, where your very survival is affected? That is profound.”
The study, which looked at two groups of around 3,800 cancer patients (one group bankrupt, the other not) diagnosed betweem 1995 and 2009, found that the mortality rate was not related to whether patients were diagnosed with metastatic disease. It also hinted that cancer patients who had “financial difficulty short of bankruptcy” might also be at risk.
Ramsey said the impact of the Affordable Care Act, implemented in Washington state around 2011-12, was probably "small so far" and that while it might eventually reduce the number of patients who end up bankrupt, "for those who file, the impact on survival won't be different."
Photo courtesy of Christopher Kern
Sick, strapped and stressed
While the study only looked at the association between bankruptcy and mortality, not what exactly led to the deaths, Ramsey did offer theories as to why cancer patients in dire financial straits were more vulnerable.
Stress over finances could be one factor, he said, something that rang true for Bernstein.
“I can’t tell you how much PTSD-type stress I have around this issue, dating back to the first time I was diagnosed with cancer in 1994,” she said. “Before that, I had perfect credit and always paid my bills on time. [This has] happened to me three times. It takes a toll on you trying to get your life back, to be in survival mode all the time.”
Bankrupt cancer patients also may not have received adequate or timely treatment, Ramsey said, either because they couldn’t afford it or because they refused it, not wanting to burden their families further. Previous studies have shown that in some cases, cancer patients in financial distress will refuse or miss treatment because of its high cost.
“There may have been significant delays due to patients having to deal with the financial issues or even perhaps with the institutions that were treating them stopping due to them going into receivership,” he said. “We haven’t looked at this but it is certainly feasible. [Maybe] the centers are still offering therapy but the patients just stop coming because their bills are piling up and they say, ‘My family’s already devastated and any more treatment is going to put them further in the hole.’
“There’s a whole lot of stuff in between [bankruptcy and mortality] that we don’t know,” he said. "That’s why we want to do more research.”
While there are questions about what, exactly, led to patients’ deaths, no research is necessary to understand how a cancer diagnosis could bankrupt someone.
The cost of cancer drugs has soared in the last decade; ditto for the out-of-pocket share patients are expected to pay. Insurance plans have become more expensive with higher premiums, higher deductibles and higher copays and cancer care often entails pricey surgeries, chemotherapy infusions, targeted treatments and weeks of radiation.
“People will rack up a quarter million dollars in bills in one year,” he said, adding that even patients with insurance may find themselves overwhelmed by debt.
“I think the general public can’t assume that insurance is going to cover everything anymore,” he said. “Or that they’re going to come out the other end financially intact. I think most people should worry just a little bit, unless they’re Bill Gates or Jeff Bezos. A lot of people live paycheck to paycheck. They don’t have those kinds of reserves.”
Cycle of medical debt
Even those with reserves have found themselves buried under debt.
After weathering her first diagnosis (and its related financial hit) at age 29, Bernstein started socking money away as soon as she was back on her feet – just in case.
“Instead of buying a house and doing what all my peers were doing, something told me I needed to have an emergency fund,” she said. “And 11 years after the first diagnosis – boom! – I got the second one.”
This time around, she had cancer in her other breast. At age 40, Bernstein started off on what she thought would be a routine lumpectomy and radiation regimen but was soon hit by complications, infections, an ER visit, a slew of follow-up appointments and, of course, all of the accompanying bills. To make matters worse, she wasn’t able to work because of treatment side effects, a common scenario with young cancer patients.
“I thought, I’ve done this before and I have the financial reserves, but radiation basically cut my legs off,” she said. “I lived upstairs in a building with no elevator and it was like climbing Mount Kilimanjaro every day. I wasn’t able to work. The fatigue wouldn’t dissipate.”
Her nest egg dwindled to nothing while she recovered and, eventually, started working again. But four years later in 2009, cancer came back. This time, she had to have a double mastectomy and chemo and began the process of breast reconstruction. But again, she ran into complications leading to more hospitalizations and even more debt.
“By the time I was diagnosed for the third time, I’d used up all of my money, all of my investments, all of my savings,” she said. “A year and a half after treatment, I couldn’t afford my rent-controlled apartment anymore because I wasn’t back on my feet enough to work. I had to move out and stay with friends and start rebuilding. I have bills that need to be paid off but I can’t go into it or I’ll likely have a panic attack. Basically, advocacy and the realization that I could [use this] ordeal … to help others is one of the very few things that has kept me ‘alive’ and fighting to rebuild my life.”
Trying to fix a broken system
Part of a growing national movement, HICOR is trying to find ways to harness these out-of-control cancer costs through scientific research and working partnerships with patients, providers, payers and others. Both Ramsey and HICOR co-director Dr. Gary Lyman talk of a broken system, where politicians dither as people die. Study by study, data point by data point, they’re shedding light on the consequences of our current cancer care system, hoping their findings will drive policy change.
Ramsey acknowledged HICOR’s latest study is a bitter pill to swallow, but said it’s absolutely crucial to show what patients are now going through.
“Why are we letting patients go bankrupt or get into horrific financial distress while they have cancer?” he said. “That’s not good for society. It’s not good for the patients. And it’s not good for the providers. This is something we’re going to keep researching until we see changes in these trends. I don’t know how to change the entire system, but we are focusing on solutions, like financial transparency for patients.”
Cancer patients and their providers should find time to discuss costs, he said, even though it may be uncomfortable.
“A lot of providers don’t want to deal with financial issues or don’t have enough information to do so,” he said. “But if physicians aren’t attending to the financial consequences of their decisions and it’s putting a portion of their patients into bankruptcy? This paper suggests it’s directly harming patients … [it’s] killing them. We really have to face this problem as a provider community and we have to face it as a society, too.”
When it comes to cancer treatment, he said, there are often choices. The best treatment – Option A – may offer only one or two extra months of life, while costing five times more than Option B, the next best.
Doctors and patients both need to understand the whole cost trajectory of cancer care, he said.
“In oncology, you may know what you’re going to get for treatment, but how many people know right up front what it’s going to cost them? No one does,” he said. “Patients need to know that and they need to know that if they get into financial distress and stop their therapy, that’s going to impact their survival. Perhaps more than picking Option B, [a therapy] they can complete.”
Bernstein, who is currently covered by Medicaid thanks to the Affordable Care Act, doesn’t blame one particular entity: she points to the system.
“It’s the fact that medicine is driven by profit,” she said. “I had great insurance but even with great insurance, they kept increasing my out-of-pocket costs and my deductible and they kept reducing how much they would reimburse and the network so there was more chance I’d be out of network. That’s what it felt like. I can’t tell you how hard it has been to live like this for the past few years. I don’t know how to solve it.”
Ramsey and his HICOR colleagues are trying to help. But even the health economist admits that he, too, is frustrated.
“Nobody plans for cancer,” he said. “You’re just living your life and you get cancer and then you have to deal with the cancer and potential financial devastation. We can’t have a system where that’s happening.”
TIPS FOR PATIENTS
- Talk to your health insurance company and make sure you understand their deductible and copay requirements.
- Take a friend, family member or advocate of some kind with you to your doctors’ appointments so you will have someone who can bring up the cost question on your behalf, if necessary.
- Don’t be afraid to mention to providers that cost is a potential issue.
- Discuss various therapy options – and their cost – with your provider. Beyond the issue of choosing a lower cost therapy, avoiding low value tests and procedures can save a lot of money (click here for ASCO’s Choosing Wisely recommendations).
- Consider hiring a financial counselor right away to help guide the family through this aspect of cancer care.
- Look into patient access or patient assistance programs offered by pharmaceutical companies such as Astellas Access Program, Genentech’s Access Solutions, or Roche Pharmaceuticals’ Rxhope.
- Take advantage of organizations such as the Patient Advocate Foundation, which provides arbitration, mediation and negotiation services to help patients with access to care, medical debt and job retention during cancer and its treatment.
- Other good organizations offering help with financial issues related to cancer care: Family Reach, which collaborates with hospital social workers to help with the overwhelming financial and emotional burdens of cancer and the Cents Program, a nonprofit founded by federal bankruptcy judge Karen A. Overstreet, a coauthor of the bankruptcy/mortality study, which provides education and navigation around financial literacy and bankruptcy and has a program especially designed for cancer patients.
Join the conversation. Talk about the challenges of cancer care costs on Facebook.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at email@example.com.
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