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.
Fear of bankruptcy is the least of my worries. Can I even continue to get medical care is #1. I live in a state that did not expand medicaid and my income is too low to qualify for a subsidy. Heath insurance, with $5000 out of pocket deductible is costing me $798/mo. I have payments to MDAnderson cancer center that if I don't keep up they will dump me as a patient. I lost my job over cancer and because of the state laws in this state failure to renew my contract due to cancer. I was too "expensive" for their insurance - they are self insured - isn't considered considered discriminatory (at least according to the EEOC ruling I got although I did get a right to sue letter but my statue of limitations for that runs out at the end of the month and I have no money for a retainer as no one around here takes that pro bono) it only would have been if they dumped me before my contract ended. I would be homeless but a friend took me in and I am living in their basement. They are moving out of state in June and unless I can turn things around and find more employment that I current have, I will be homeless. I have gone through my savings. Could not schedule a surgical biopsy last summer because I could not afford two out of pocket/deductibles in one year (COBRA had ended) and we couldn't schedule it before COBRA ended (that being said I have follicular non-hodgkin's lymphoma which is indolent so likely a delay isn't going to make much difference - well other than my stress levels). Because of the expense I have not been followed (post treatment) for the breast cancer I was diagnosed with 10 months prior to the lymphoma diagnosis (second breast cancer - other side 7 years prior to the second diagnosis). Neither breast reconstruction is finished because I don't have the money (again in the large scheme of things pretty trivial but there are times I am upset over how I look if anything is the least bit fitted). The only way I have been able to even pay for health insurance is a gofundme account (http://www.gofundme.com/78d3nc please do spread that far and wide) but donor fatigue is setting in. If I had been able to get a subsidy for Obama care MD Anderson Cancer center does not accept out of state Obama care plans yet there is nothing that is even close to that level of quality care in state. I might as well live in some least developed nation for what is going on in my situation.
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