At the 2016 Community Oncology Conference, a national meeting of oncologists and other experts providing care for patients with cancer, Patricia J. Goldsmith, Chief Executive Officer of CancerCare, and Alan J. Balch, PhD, Chief Executive Officer of the Patient Advocate Foundation, discussed this topic and their respective services.
CancerCare
Each year, the nonprofit organization CancerCare assists 180,000 patients with cancer in the United States by providing financial assistance and counseling. CancerCare provides direct financial assistance for patients with specific types of cancer. Patients can reach them directly to get help with medications, transportation, and other needs related to their cancer treatment. Visit www.cancercare.org, or call their HopeLine, 800-813-4673. For copay assistance call 866-552-6729.
This organization recently surveyed 3000 patients with cancer to assess their barriers to cancer treatment. Among patients under age 65, between 10% and 25% reported they were not satisfied with their insurance coverage, including access to new treatments or to genetic testing, the cost of medications, and copays and deductibles.
“So this clearly is showing a lot of challenges with respect to current insurance design, and its adequacy for patients with cancer,” said Ms. Goldsmith.
Being employed during treatment is important for many patients. About 33% of survey respondents continued to work full-time during treatment, 25% stopped working, and 13% switched from full-time to part-time employment.
“Many people who are being treated for cancer are insured and need to work in order to maintain benefits,” said Ms. Goldsmith.
For younger patients (under 64), the average monthly expenses were $1112 versus $584 for older patients who are covered by Medicare, she said.
“Clearly, financial distress is contributing to all of the other levels of distress that a patient faces. And expenses related to cancer treatment had an impact on numerous aspects of patients’ finances,” said Ms. Goldsmith.
Among patients under age 54 who responded to the survey, 33% cut down on groceries or transportation; 25% applied for financial assistance from different organizations; 21% missed paying their utility bills; 17% missed rent or mortgage payments; and 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.
In addition, many patients took steps to reduce costs, such as 39% skipped physician appointments; 38% postponed or did not fill prescriptions; 34% skipped some doses of the drugs; 31% cut pills in half.
“These are staggering data. These financial challenges are completely compromising the best care for individuals in so many different ways,” she emphasized.
Patient Advocate Foundation
The Patient Advocate Foundation provides case management and copay assistance for patients with cancer, suggested Dr. Balch. “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,” he said.
In 2015, the foundation provided assistance to more than 80,000 patients, and helped to relieve patients of treatment-related debt that amounted to more than $40 million. The organizations’ FoundationACCESS Careline helps patients get 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.
The foundation has about a 60% success rate in accessing treatment for patients whose case has been completed, “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,” said Dr. Balch.
In 2015, the foundation conducted a financial toxicity survey among patients who received financial assistance. Of the 685 patients who were assisted through case management and completed the survey, 90% had a financial hardship because of the cost of their medical care; 83% characterized this hardship as extremely or somewhat severe; 62% cut or reduced noncritical household expenses; 40% paid utility bills late; 37% could not afford groceries; 26% had to stop or postpone treatment; 26% skipped prescribed medications and delayed doctor visits.
“The financial toxicity and acuity is far more intense in this population for obvious reasons, where patients are making the most trade-offs is in their everyday cost of living,” he said. “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,” Dr. Balch added.
After implementing its Co-Pay Relief program, the Patient Advocate Foundation 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% would stop treatment entirely; 49% would struggle to afford housing, food, and transportation; 21% would change treatments.
The first survey showed that financial distress was about 90% among patients who received case management, where patients are asking for help but are not necessarily receiving it yet. The second survey showed that among those who received copay help, the financial distress went down to 70%.
“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,” concluded Dr. Balch.
