AfPA and CancerCare Explore the Cancer Treatment Experience

August 11, 2016

Cancer patients may feel under-informed about their diagnosis, overwhelmed by out-of-pocket expenses and unable to carry out day-to-day activities – despite being confident about their quality of care.

This narrative emerged during an August 9 webinar co-hosted by the Alliance for Patient Access and CancerCare, which explored CancerCare’s 2016 Patient Access & Engagement Report. The report included survey results from more than 3,000 cancer patients of varying ethnicities, income, education, geography, age, insurance and cancer type.

What Cancer Patients Don’t Know

Of the patients surveyed, only about half reported having all the information they needed when they first received their diagnosis:

  • Less than 50 percent had adequate details on insurance coverage and where to get emotional support
  • Of patients treated in community practices, 57 percent reported not having enough details to determine whether they could continue working
  • 88 percent lacked information on clinical trials opportunities.

The Alliance for Patient Access’ Alan Marks, MD, described patients’ struggle to “download” all the information provided to them at diagnosis. Ellen Sonet of CancerCare agreed, adding, “After you tell them they have cancer, they can’t hear anything else. They’re terrified.”

Paying for Cancer Treatment

Handling treatment expenses presents patients with yet another challenge. The average out-of-pocket cost for cancer patients under Medicare age came to $1,112 per month – including expenses such as prescription drug cost sharing and transportation for medical care. To manage these costs, patients aged 25-54 reported:

  • Skipping doctor’s appointments (39 percent)
  • Postponing or not filling medication prescriptions (38 percent)
  • Skipping doses of prescribed medications (34 percent)
  • Cutting pills in half (31 percent)
  • Ordering medication from non-U.S. sources (30 percent)
  • Missing bills such as heating, electricity and phone (21 percent)
  • Missing rent or mortgage payment (17 percent).

Cancer patients’ cost-sharing burden is sometimes described as financial “toxicity,” an allusion to the physical toxicity of chemotherapy. The problem has been a focal issue for the Alliance for Patient Access’ Oncology Therapy Access Physicians Working Group.

[View: Your Money or Your Life?]

CancerCare’s survey concludes with data demonstrating the lasting impact of cancer. Between one third and one fourth of respondents reported that cancer compromised their ability to perform day-to-day activities. And about half of patients reported significant changes in the physical, emotional, financial, social and spiritual aspects of their lives.

For more survey details, visit CancerCare.org.

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