More than a third (37.1%) of cancer patients are "seriously or very seriously" concerned about bankrupcy because of medical bills, according to a survey sponsored by the international nonprofit Cancer Support Community (CSC).
And 47.7% of the 480 respondents reported they had paid more for healthcare during the previous 12 months.
The most common reasons cited for increased expenses were costs related to insurance premiums (61.2%), deductibles (46.7%), and treatment copays (45.8%).
More than a third of respondents reported that they were very concerned about the out-of-pocket costs for hospitalization, medications, lab tests, and scans.
About half of the respondents (53.9%) were in treatment at the time of the survey. Of those not receiving treatment, 93.2% were in remission. The majority of respondents in remission reported that they still needed care, including physician follow-up visits (87.4%) and follow up tests (60.9%).
"Patients should pay something but they shouldn't go bankrupt and put their family in financial distress when combating a life-threatening disease," said Ezekial Emanuel, MD, PhD, chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania in Philadelphia, in a CSC video.
The Affordable Care Act has helped more people gain access to healthcare coverage, including those with pre-existing conditions such as cancer. However, according to the CSC survey, the cost of care is still too high for many cancer patients. As previously reported by Medscape Medical News, cancer patients are twice as likely as the general population to file for bankruptcy.
The Affordable Care Act "is a good initial first step, but it is flawed from the patient perspective because of the rising expenses," said John D. Sprandio Sr, MD, an oncologist/hematologist from the Main Line Health System in Newtown Square, Pennsylvania.
"You have patients who need ongoing chronic care, attention, support, and physician interaction who are making decisions not to comply or making treatment decisions because of their out-of-pocket expenses," said Dr Sprandio in the video.
He added that this is no longer the next crisis in cancer care, but "is the crisis in cancer care."
In the video, an interviewed patient noted that even though he felt blessed to have very good insurance, it still cost his family "six figures" to get through this experience.
"Knowing I was digging a hole, between not working and the additional costs, weighed on me tremendously," he said. Not knowing how long his treatment would last, coupled with being unable to work, he worried that "I would saddle our family with hundreds of thousands in potential debt in order for just me to get the benefit."
Another patient pointed out that he had "fallen into a trap that a lot of patients fall into, in that they don't get prescriptions filled or they don't take the medicine every day."
A third patient explained her decision to decline another round of chemotherapy. Although cost wasn't the only reason, she explained that she was self-employed and "didn't have $18,000 just sitting around to pay for treatment."
Delays and Coverage Changes
The survey was part of the Access to Care Project, which is trying to identify the challenges patients face in accessing care, according to the CSC. The survey was administered online in October 2014.
Of the respondents, 41.0% had nonmetastatic breast cancer, 19.6% had metastatic breast cancer, 8.1% had multiple myeloma, 6.5% had chronic myeloid leukemia, and 3.8% had prostate cancer. In the remaining patients, more than 35 types of cancer were represented.
In general, the survey showed that healthcare reform has worked well for some patients, and most appeared to be largely satisfied with their health insurance. However, in addition to contending with out-of-pocket costs, approximately 20% were struggling with issues related to access to care, including not receiving needed medical care or experiencing delays in care.
The most common types of delay were related to scheduling a test or medical procedure (61.9%) or referral to a physician or healthcare team (46.7%)
The Affordable Care Act has changed coverage options, but not always for the better. Some patients reported that their physicians were no longer part of their current insurance plans, and they were forced to change providers. About one-fifth of respondents stated that they had serious concerns about having to switch doctors or hospitals/clinics because of limitations in the insurance network, and about one-fifth had concerns about being able to get a second opinion.
Although the respondents reported that they generally had good access to medical care, there was a notable disparity between that and access to psychosocial care. In fact, 71.0% of respondents reported that they did not receive social and emotional support services, including screening for distress.
Of this group, 33% did not know where or how to get support and another 22% did not receive a referral for psychological and/or emotional support.
Focus on the Patient
Dr Emanuel pointed out that it has been a challenge to develop quality metrics that "everyone agrees are meaningful in cancer."
"We need some process measures to assure everyone that patients are getting quality care," he said. "We need to shift from doing more, testing more, giving more expensive chemotherapy, and seeing patients more frequently to focusing on what is important to the patient and what the right treatment for the patient is."
"That requires a change in the kind of incentives we provide and how we pay for cancer care," Dr Emanuel explained. "We shouldn't be paid for doing things, we should be paid for caring for patients."
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Cite this: Survey: Bankruptcy Worries for One-Third of Cancer Patients - Medscape - Apr 06, 2015.