Support Services Provide Some Relief from Financial Distress of Cancer Treatment, but More Is Needed

Meg Barbor, MPH

July 2016, Vol 6, No 7 - COA Conference Highlights


At the 2016 Community Oncology Alliance conference, Patricia J. Goldsmith, Chief Executive Officer of CancerCare, and Alan J. Balch, PhD, Chief Executive Officer of the Patient Advocate Foundation (PAF), discussed the services their organizations provide for patients, highlighting the cost barriers for patients with cancer.

CancerCare: Patients Cutting Costs by Skipping Treatment

In 2015, CancerCare provided 180,000 patients with cancer various services, including financial assistance, counseling, and education.

“In 2015, CancerCare provided nearly $13 million in financial assistance to more than 21,000 people to help with treatment-related costs such as transportation, home care, childcare, and copayment assistance,” said Ms Goldsmith.

CancerCare’s website (cancercare.org) provides up-to-date information about cancer and received 2.2 million visits in 2015 alone. In addition, a feature called “Ask CancerCare” allows individuals to receive answers to their questions from licensed social workers.

“When I joined CancerCare and I saw how many individuals we interact with and serve, I felt that we had an obligation to understand cancer patients, their caregivers, their journey, and the challenges they face,” Ms Goldsmith said. In a recent study by CancerCare, 3000 patients with cancer were surveyed to assess the most common barriers they faced during their treatment.

Among younger respondents (aged <65 years), 10% to 25% reported being dissatisfied with their insurance coverage for cancer treatment, including access to new treatments or to genetic testing; the cost of medications, copays and deductibles; access to complementary therapies; and access to an insurance case manager. “So this clearly is showing a lot of challenges with respect to current insurance design and its adequacy for patients with cancer,” Ms Goldsmith said.

“Employment status during treatment is important for many obvious reasons,” she said. Of the respondents aged 25 to 64 years, 25% stopped working during treatment, and 13% switched from full-time to part-time employment. Approximately 33% of all respondents continued to work full-time. “Many people who are being treated for cancer are insured and need to work in order to maintain benefits,” Ms Goldsmith said. “Twenty-five percent stopped working during cancer treatment. That is a very, very large number.”

For patients aged 25 to 64 years who receive treatment, the average monthly out-of-pocket costs totaled $1112 compared with $584 for older patients (aged ≥65 years) who are covered by Medicare. Approximately 20% to 33% of patients reported that it was difficult to determine out-of-pocket costs before incurring the expense. “Out-of-pocket hospital fees were considered the most difficult to determine, and physician fees the easiest,” said Ms Goldsmith. “But I use that term ‘easy’ in a very relative sense.”

“Clearly, financial distress is contributing to all of the other levels of distress that a patient faces,” she said. “And expenses related to cancer treatment had an impact on numerous aspects of patients’ finances.” Of respondents aged <54 years:

  • 33% cut back on essentials (eg, groceries, transportation) and/or borrowed from family or friends
  • 25% applied for assistance from support organizations
  • 21% missed utility bills
  • 17% missed rent or mortgage payments.
Of younger patients (aged <54 years), 5% declared bankruptcy. “You can see that the need is acute, and people are not just cutting back on things like vacation or luxury items. We are talking about things that people need each and every day but are unable to afford,” she said.

Many patients took steps to reduce costs, such as:

  • 39% skipped physician appointments
  • 38% postponed or did not fill prescriptions
  • 34% skipped doses of prescribed drugs
  • 30% ordered medication from non-US sources
  • 31% cut pills in half.
“These are staggering data. Certainly the needs and challenges are more acute in the under 64 age-group, but even in the 55 and older age-group, 8% responded ‘always’ or ‘sometimes’ with respect to cutting their pills in half. These financial challenges are completely compromising the best care for individuals in so many different ways,” she emphasized.

Patient Advocate Foundation: Case Management and Copay Assistance

Dr Balch discussed PAF’s case management and copay assistance for patients with cancer.

“At PAF, our mission is to help patients with access and affordability issues. Most of the patients we serve are cancer patients, but we served over 500 different disease areas last year,” Dr Balch said.

In 2015, the foundation provided direct assistance to more than 80,000 patients, and obtained more than $40 million in debt relief on behalf of patients and their providers.

The majority of the patients served by PAF in 2015 were relatively young (aged <56 years) and ethnically “fairly diverse.” More than 33% of the patients were commercially insured, with an average household income of ≤$23,000.

The PAF FoundationACCESS Careline is dedicated to garnering access to targeted therapies. “The Careline provides personalized case management services to patients who face challenges related to accessing care consistent with the genetic characteristics of their disease,” said Dr Balch.

Overall, 426 patients to date have been helped through this program, and “when we are able to complete the case work, there is about a 60% success rate for gaining access to treatment through some means. But about 10% of patients die before we are able to get them assistance, which speaks to the amount of time it takes to work through these barriers in front of them,” Dr Balch said.

PAF conducted a financial toxicity survey between March 2015 and April 2015. Of the 685 patients who were assisted through case management and who completed the survey, 90% had a financial hardship because of the cost of their medical care, and 83% characterized this hardship as extremely or somewhat severe.

“The financial toxicity and acuity is far more intense in this population for obvious reasons,” said Dr Balch.

Overall, 26% of patients had to stop or postpone treatment, and another 26% did not follow medical advice as prescribed (eg, spread out medications, delayed follow-up visits).

“Where patients are making the most trade-offs is in their everyday cost of living,” Dr Balch said. Overall, 62% of patients cut or reduced noncritical household expenses, 40% paid utility bills late, and 37% were unable to afford groceries.

“About 33% of respondents had about $15,000 per year of out-of-pocket costs, but an average income of $23,000 or less. Do the math,” he added.

After implementing its Co-Pay Relief program, PAF surveyed approximately 500 patients who received financial assistance through the program. “The survey covered 11 different disease categories, but I can tell you the cancer data are almost the same,” said Dr Balch.

Responding to the question, “Without charitable assistance, what would happen to you?”

  • 29% of patients said they would stop treatment entirely
  • 49% would struggle to afford housing, food, and transportation
  • 21% would change treatments.
“Financial hardship distress was found to be at about 90% in the case management population, where patients are asking for help but are not necessarily receiving it yet, but in the copay population, where they are getting some form of help, that distress goes down to 70%,” Dr Balch said.

“Copay support is helping patients better adhere to medication and their medical treatment, and is helping somewhat with their cost-of-living issues, but it is not enough,” Dr Balch concluded.