Helping Patients Battle the Financial Toxicity of Cancer Treatments

Kate M. O'Rourke

Disclosures

November 20, 2015

In recent years, the financial toxicity associated with cancer treatments has stepped out of the shadows and into the spotlight. Studies have shown that people diagnosed with cancer are two-and-a-half times more likely to declare bankruptcy than those without cancer and that financial toxicity can cause treatment nonadherence and lifestyle changes that negatively affect quality of life and increase morbidity and mortality.[1,2,3,4] So, with the heightened awareness, why is financial toxicity still such a huge problem?

According to Dan Sherman, MA, LPC, a clinical financial consultant at The Mercy Health Lacks Cancer Center in Grand Rapids, Michigan, most cancer centers have staff who address financial toxicity, but often it is a responsibility added on to another job description, or the staff has not been properly trained. He repeatedly sees this as owner of NaVectis Group, a company that helps hospitals implement comprehensive financial navigation programs.

 
If you interviewed social workers or nurse navigators and asked them if they were trained to provide financial navigation services, you would have close to a 100% response of, 'I haven't been trained. I learned it as I went along.'
 

"Counselors don't have the level of expertise to be able to successfully navigate these patients through complex scenarios," said Mr Sherman. "If you interviewed social workers or nurse navigators and asked them if they were trained to provide financial navigation services, you would have close to a 100% response of, 'I haven't been trained. I learned it as I went along.' That is not good patient care. We would never expect that a surgeon not be trained how to do surgery. Financial navigation services should be done by a dedicated individual who is trained to provide it."

Another problem is that most hospital systems are not proactive. Instead, hospitals wait for a patient to call and complain about a bill, and then they try to figure out what they can do for the patient. "By that time, the only solution is usually charity. We will never be able to tackle financial toxicity with this type of an approach," said Mr Sherman.

Yousuf Zafar, MD, MHS, an associate professor of medicine at Duke Cancer Institute in Durham, North Carolina, agrees. "Early communication and early discussion about potential costs is really important. It is important to understand that financial toxicity can vary tremendously from patient to patient," said Dr Zafar. He had one patient who silently paid out of pocket for his medication until he was in dire financial straits. "For the five and a half weeks he was taking oral capecitabine, he was paying for all of it out of pocket. He never once mentioned his problem to me,” said Dr Zafar. "What is worse, I never asked him."

At Mercy Health, Mr Sherman meets proactively with any patient who falls into one of several categories. These include having no insurance, Medicare A and B only with no supplemental policy, a high out-of-pocket Medicare Advantage plan, a high out-of-pocket commercial plan, an advanced-stage diagnosis, a diagnosis involving pricey oral agents, and an Affordable Care Act policy.

Many Affordable Care Act policies have significant out-of-pocket responsibilities, but a decrease in income after a cancer diagnosis can affect the person's policy. Patients who aren't directed to update their policies can really miss out. "In the last week, I had two scenarios where a patient went from a $13,000 out-of-pocket expense responsibility to less than $1500 just because we called the Marketplace and updated their projected income for the year," said Mr Sherman.

Patients who have high out-of-pocket insurance plans can seek help from foundations who offer to pay a portion of their bill, but counselors need to know where, when, and how to apply. "Unfortunately, so many hospital systems are not utilizing programs from foundations," said Mr Sherman. "It does get complex in terms of billing these programs, so hospitals sometimes shy away from it."

Patients on Medicare A and B only should be encouraged to obtain a supplemental policy. "A patient who has Medicare A and B with no secondary is going to be responsible for 20% of all of their outpatient care with no cap. How most hospital systems navigate this problem is to apply for Medicaid. I would say 80% to 85% of that patient population will not qualify for Medicaid, so then the counselors quickly jump toward completing a charity application. This puts a Band-Aid on the problem, but it doesn't fix it," said Mr Sherman. "The approach we take is to try to get a secondary insurance or a Medicare Advantage plan in place that will help buffer the out-of-pocket costs for Medicare patients. In Michigan, patients can enroll into a secondary insurance where they have 100% coverage for their care."

Mr Sherman said that drug copay assistance programs run through pharmaceutical companies or foundations are very helpful. He does not recommend that patients use drug discount cards that are sent out by private, nonpharmaceutical companies.

Rather than just directing patients to change their Affordable Care Act policy, call a copay assistance program, or apply for a supplemental policy, Mr Sherman does all the work, filling out the paperwork and sending it in. "We take this approach for several reasons. Some of this work is extremely complicated. Patients are overwhelmed and stressed about their illness, so to then ask them to fill out very complicated forms just isn't good customer care," said Mr Sherman. "Another reason we do the work is if we put it in the hands of the patients to take care of, my guess is that only 20% of them will actually follow through. If the patient doesn't follow through, we miss out on trying to collect on this. It is just bad business for us to leave this work in the hands of the patient."

Thomas J. Smith, MD, the director of palliative medicine at Johns Hopkins Medical Institutions and a professor of oncology at Sidney Kimmel Comprehensive Cancer Center in Baltimore, said that getting doctors to bring financial concerns up is another part of the problem. Doctors have been afraid that bringing finances up might ruin the doctor-patient relationship, he said, but it doesn't. In a recent survey of 107 cancer patients, 72% said that no healthcare professional had ever discussed costs with them, but 80% of patients said that they wanted cost information.[5]

"Clinicians need to just ask, 'Are you having problems with paying for treatments?'" said Dr Smith. "Patients should ask, 'How much will this cost, and how much benefit does the average person get in terms of longer life—weeks, months, or years—and side effects and toxicity? Is this potentially curative? Are there long-term survivors? How many out of 100?'"

Getting some patients to talk can be challenging. "Sometimes patients really struggle with embarrassment that they can't afford their care. They are scared and overwhelmed," said Mr Sherman. "I try to get their defenses down. I explain to the patient that I have a full-time job doing this, meaning that there are many people who are in the same situation you are in, so you are not alone."

Mr Sherman is involved with the Association of Community Cancer Centers Financial Advocacy Network. Launched in 2012, the network provides financial toxicity tools and resources to oncologists including financial advocacy case-based workshops, online courses, a toolkit, and a forum. The network provides job descriptions and recruitment tools for financial advocacy positions. Tools to deliver and improve effective financial advocacy services are available, including those aimed at communicating with patients, understanding the insurance process, and handling denials and appeals. The 2015 Patient Assistance and Reimbursement Guide provides a bounty of information on how to use patient assistance programs.

Dr Smith said that if a drug is unaffordable for a patient, the patient should find out how much benefit the drug offers the average person. "If it's just weeks, it is not worth it. If it's many months or years, or there is a chance of cure, then appeal to everyone at once—the drug company, the practice, and the healthcare system," said Dr Smith.

To increase transparency, Dr Smith said that the front office staff should develop a list of common treatments and their costs that they can share with patients. "For most people, 4 cycles of AC dose-dense plus Neulasta®, then 12 weekly Taxol® is about X dollars," said Dr Smith. "US Oncology has done this since November 2014 without fail."

Sometimes hard numbers are difficult to find, but progress is being made. In late June, the American Society of Clinical Oncology released a draft framework for assessing the value of cancer therapies.[6] The document proposes a methodology to compare the relative clinical benefits, side effects, and costs of treatment regimens that have been tested head-to-head in randomized clinical trials. ASCO's vision is that patients will be presented with a comparison of expected out-of-pocket and overall drug acquisition costs along with a net health benefit score (NHB) for regimens being compared.[6] For both adjuvant and advanced disease treatments, the NHB is calculated based on improvement in overall or progression-free survival and on the number and severity of drug toxicities. For metastatic disease, points are also given to regimens that offer relief from cancer-related symptoms or allow patients a treatment-free period. Once finalized, doctors will have the ability to adjust the parameters of the tool based on an individual patient's health preferences and financial situation. "Ultimately, the definition of value will be highly personalized for each patient," said Lowell Schnipper, MD, chair of ASCO's Value in Cancer Care Task Force, and chief of hematology/oncology at Beth Israel Deaconess Medical Center in Boston, Massachusetts.

Researchers at Memorial Sloan Kettering Cancer Center have developed drugabacus.org, an interactive tool for exploring drug pricing. The tool focuses on 54 new drugs that have been approved for cancer since 2001 and lets users compare the price the company charges to a price based on value called the Abacus price. Value can include a number of components such as how much do patients benefit from treatment, how difficult are a drug's side effects, and whether the treatment addresses a large public health burden. DrugAbacus lets the user decide how much different components should matter in a drug's value and then spits out an Abacus price that can be compared to the drug's actual price.

Other tools are available to help characterize how treatment is affecting patients. Jonas de Souza, MD, an oncologist at the University of Chicago, has developed the comprehensive score for financial toxicity patient-reported outcome measure (COST-PROM). Designed to quantify the amount of financial toxicity that a patient is experiencing from their cancer treatment, the tool includes 11 statements such as, "I am able to meet my monthly expenses." A patient answers using a scale ranging from 0 (not at all) to 5 (very much). The tool, along with a number of other resources such as sources for co-pay assistance, can be found at costofcancercare.uchicago.edu.

All of these tools are desperately needed. In a recent survey of 174 individuals being treated for cancer, one third of participants reported that their cancer costs were a hardship; 16% said that they were having difficulty paying for basic necessities, and 19% said that they were using up most or all of their savings paying for their cancer treatment.[7] "More patients are experiencing undue financial burden, but financial toxicity is getting more attention now," said Dr Zafar.

Mr Sherman provides services for Sevenx Group and is owner of the NaVectis Group. Dr Smith owns stock in UnitedHealthcare. Dr Zafar has served as an unpaid consultant for Genentech. Dr Schnipper has a consultant/advisory role with Merck and a leadership position with Eviti.

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