The possibility of going bankrupt is high on the list of concerns for 37.1 percent of cancer patients who participated in a recently published survey by the Washington, D.C.-based Cancer Support Community (CSC), an international nonprofit.
The survey was completed by 480 adults living in the United States, and 21 others who were diagnosed with cancer and were either undergoing treatment or in remission. The respondents were mostly white, female and non-Hispanic.
Nearly two out of five patients were seriously concerned about bankrupting themselves or their families as a result of treatment expenses; 71.1 percent said they did not receive any social or emotional support services, including screening for distress during cancer care. Among those, more than half (55 percent) said they didn’t know where to find such support.
The survey also found that among the respondents, 22.1 percent experienced delays in care, 61.9 percent of which involved lateness in scheduling a test or procedure, 46.7 percent involved delays in being referred to a physician or health care team, and 22.9 percent experienced delays in obtaining a prescription.
A series of video interviews accompanying the report showed cancer patients discussing the difficulty of meeting out-of-pocket expenses and the trade-offs they had been forced to make, such as choosing doctors based on co-pays, cutting back on food, activities—including education—to save money, and becoming isolated from family members. “Even if I starve to death, I will not let go of my insurance. That is my life,” said one woman identified as Mary from Culver City, Calif.
“People are making decisions like consumers in a situation where the clinical stakes and the potential suffering of patients is substantial,” said a physician quoted in the video, John D. Sprandio, Sr, a specialist in hematology and oncology based in Philadelphia. He said two of his patients recently had elected not to undergo therapy because of costs.
The survey was designed to gauge access to insurance, providers and services, and to assess patients’ concerns about direct costs of cancer and care. Kim Thiboldeaux, CEO of CSC, concluded, “health care reform is working well for some, and not as well for others. In patients for whom it is working well, there are still bumps in the road.”
Nearly half (47.7 percent) of respondents said they had paid more for their treatment over the past 12 months, attributing those added costs to insurance premiums (61.2 percent), deductibles (46.7 percent) and treatment co-pays (45.8 percent).
Most of the patients were covered by an employer-based plan or some form of Medicare; 18 participants had purchased their coverage through a health insurance marketplace; and five patients reported not having insurance of any kind and being unable to afford a plan.
Nearly all of the survey participants were women (94.4 percent), white (77.8 percent) and college educated (70.6 percent), with just over a quarter employed full-time and 33 percent working part-time.
The majority of respondents were breast cancer patients (19.6 percent metastatic and 41 percent non-metastatic). Roughly 60 percent had undergone chemotherapy, 57.7 percent surgery, 48.5 percent hormone therapy and 43.1 percent radiation.
Patients in the survey expressed strong concerns about having to switch doctors because of network limitations (21 percent); being able to get a second opinion (21 percent); and having to switch hospitals or clinics because of network limitations (20.5 percent).
“I made appointments with doctors only to have them call me back later and say, ‘Oh, we don’t take your plan, we take other plans,’” said a woman identified only as VJ from La Quinta, Calif. However, the woman said she obtained insurance through Affordable Care Act reforms, and her out-of-pocket expenses had declined considerably as a result, despite the hassle of finding participating providers.
Nearly 20 percent said they did not have enough time with their healthcare team. This trend was more pronounced among those with lower incomes, the survey said, stating “Future research should evaluate efforts to provide tailored resources for low income survivors, particularly during the first 6 months post-treatment when distress levels are highest.”
Large proportions of the patients said they spent time talking with their providers about therapy goals, risks and benefits, alternative treatments, palliative care, and work impact. However, 34.4 percent said they had discussed the financial costs of treatment, while 51.8 percent said they had discussed their treatment’s impact on work.
According to the survey, 16.3 percent of patients said they were not able to get the treatment they needed.
In a set of conclusions, the CSC recommended further monitoring of the costs of cancer care, evaluating the cost burden effect on patients’ emotional health, and studying the new health insurance marketplace.
To read more, view
: "Special Report on Paying for Cancer Care."