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Key Issues

What our data tell us….

About Costs of Care and Financial Toxicity

The financial impact of illness affects patients deeply and in many ways. Patients change their treatment and their lives as a result of the hardships they encounter. They want to talk to their providers about these issues, and they want assistance with identifying resources to help reduce or deal with their costs.” Alan Balch, PhD

In May 2018, The Patient Advocate Foundation conducted a survey of 1158 patients who received assistance from the PAF Case Managers. The survey asked these patients about the financial hardships they have experienced as a result of their illness, the sources of that hardship and the opportunities they have had to discuss the costs of their care with their health care providers.

PAF/NPAF CEO Alan Balch presented a summary of the survey results at the organization’s annual breakfast at the 2018 ASCO meeting.

Here are some of the key findings.

70% of respondents have experienced financial hardship in the last year as a result of their condition

60% of that group ranked their financial hardship as severe or very severe on a scale of 1-10.

Most patients identified direct costs–coinsurance, copays and deductibles–as the primary reason for their hardship, but 30% of cancer patients and 12% of HIV patients said it resulted equally from direct costs and out of pocket expenses such as lost job time, child care expenses and transportation.

  • 37% said they had to change the way they paid for their medical care
  • 28% said that costs led them not to follow medical advice
  • 12% had to stop or postpone treatment
  • 7% said they shifted to a different treatment location

The impact of financial toxicity is also felt on a person’s life.

  • 56% cut critical household expenses
  • 46% were forced to use credit cards or take bank loans to pay bills
  • 35% were late in paying their utility bills
  • 32% had difficulty paying for groceries






What Patients Want:

Respondents were asked to rate the importance of specific topics in having conversations with their health care providers about costs.

  • 80% want to know there are options or resources available to reduce costs
  • 73% want assistance in knowing what questions to ask about cost of care
  • 72% feel confident that their providers will provide them with the information they need about costs if they ask about these issues
  • 68% want access to information about the specific costs of care for their treatments.

PAF and NPAF are now working with the Robert Wood Johnson Foundation to help raise awareness of the importance of patients and providers discussing health care costs and to develop better tools to make these conversations possible and successful.