Rise of Oral Cancer Drugs Signal Deeper Financial Toxicity Issues for Patients

Mary Anderson, BSN, RN, OCN

The rise in popularity of oral anticancer therapy has introduced problems of access and insurance coverage that oncology nurses previously did not have to deal with, according to expert presenters at the 2022 Oncology Nurse Society Bridge. However, many resources are available to nurses, and a key first step is to ask patients how they are faring financially.

“Even though you might not have all the answers right then and there when you’re talking to the patient, don’t shy away from a discussion you can have [about] their finances,” said Mary Anderson, BSN, RN, OCN, an oral oncolytic nurse navigator at Norton Cancer Institute.

Anderson presented alongside Christina Bach, MBE, MSW, LCSW, OSW-C, FAOSW; and Nora Hansen, CPhT, in a presentation titled “Managing Oral Cancer Therapies: What Are Your Tools?” The team highlighted the scope of the problem of financial-related toxicities, best practices for financial toxicity assessment, and resources to help nurses connect their patients to the care they need.

When assessing patients for the first time, oncology nurses are encouraged to ask the following questions:

1. Who is your support system?
2. Where are they located?
3. Are you able to get to the pharmacy to pick up your medications?
4. Are you able to get medications delivered to your home?

Other key questions include asking the patient to describe their insurance coverage plan, to highlight any other expenses they are worried may arise during their cancer care (ie, transportation, parking, child care, loss of income), if they are concerned about job loss, if they have had difficulty getting a prescription in the past, if their out-of-pocket expenses are what they expected, and if they are worried about financial toxicity affecting their quality of life.

“I start with making sure that folks understand that I’m not trying to be intrusive or overstep my bounds in asking really personal and private questions that we just don’t [normally talk about],” Anderson said. “I always say; ‘I know this is personal. I know a lot of people don’t want to talk about it. But knowing this information, is going to help me help you. And this is all between the two of us.’”

“We are validating that this is uncomfortable,” she added. “We’re also validating that it’s hard to ask for help—and also giving them permission at any time to say, ‘You know what, I don't want to answer that question.’”

Unfortunately, medical debt represents the number 1 cause of personal bankruptcy in the United States.¹ Since 2010, cancer care spending has increased by approximately $175 billion. It is expected to continue to grow and reach $246 billion by 2030.² Moreover, the average out of pocket expenses per patient increased from $1800 to $2900 per month since 2010.

“We have a major crisis when it comes to medical debt in this country,” Bach, an oncology social worker with OncoLink added. “A lot of that has to do with the way cancer [treatment] has changed a great deal in terms of oral oncolytics.”

“What is available to patients and how they access them is quite different than it was when I started as an oncology social worker in 2000,” she added. “[In 2000,] almost [every patient] was admitted for all their treatment for multiple days, it was covered by their major medical [insurance], and there were very few oral medications available.”

Presenters noted that solutions to help patients are also unfortunately limited: assistance from co-pay foundations are limited to certain diseases, procedures, and availability. In private practice oncology settings, which are often the only geographical option available to patients, charity care is not usually offered.

In addition, the Unites States has historically not regulated drug prices or had a system for drug price negation and a diagnosis of cancer does not equate to automatic approval for disability. Paid family leave varies across states but is generally limited—meaning that job loss (and consequent health insurance loss) is a reality faced by many Americans with cancer.

“Our solutions are limited,” Bach said. “I often feel like my hands are tied. It is very frustrating and also very morally distressing.”

Because of these increasing costs, it is not uncommon for patients to delay or forego treatments because of their financial burden. However, it is documented in the literature that financial toxicity is often linked to poorer outcomes.³

Financial hardships often also extend into survivorship; 54% of survivors are between the ages of 18 and 64 years, 42% of whom reported experiencing financial hardships following diagnosis. Debt is most prevalent in populations under the age of 64 years, as well as in Black communities.

Previously, the problem in the United States was that most patients were uninsured. However, in 2022, the problem has become that patients are underinsured.

The speakers noted that it can be difficult for patients and nurses alike to understand the difference between Medicare A, B, and D. They outlined the general difference between plans as part of their presentation:

• Medicare Part A is hospital insurance and is often premium-free;
• Medicare part B is outpatient medical, and patients must opt in and pay a monthly premium;
• Medicare part D is voluntary prescription drug coverage, patient pays premium and co-insurance (deductible and up to 25%);
• Medicare part C is known as the “advantage plan;” it is offered by private insurance plans that contract with Medicare, it covers the same services as Medicare A, B, and some drug coverages, and patients choose their provider and plan, such as HMO;
• Patients may also have Medicare supplements, which is optional additional coverage for co-insurance and deductibles.

Insured patients are responsible for paying a premium, a deductible, the copay, the co-insurance, but may be unaware of additional items that are not covered. These may include cancer related needs or services, such as wigs, supplements, lymphedema garments, some durable medical equipment, private duty assistance, and indirect costs, including transportation, parking, child/elder care, loss of income/wages, and caregiving. This represents a heavy financial burden for many, speakers agreed.

The recently approved Inflation Reduction Act is expected to help ease some of the financial toxicity that patients face by capping the amount that a patient is expected to pay per year and lowering premium prices.⁴ Moreover, the act introduced the concept of price drug negations the consequences of which could be monumental for patients, according to Bach. However, despite the act’s approval, many of the benefits are many years away.

In the meantime, nurses should know that although they play a crucial role in helping connect patients to the resources they need, they are part of a team of players who can help patients navigate the world of insurance. Other professionals who can be leveraged include private brokers, social workers, financial navigators/advocates, state health insurance assistance programs (SHIAPS) counselors, ACA navigation assistance, private brokers. Because there are so many people invested in helping connect patients to help, nurses should not feel alone or intimidated to bring up the conversation: they are not expected to solve the problem, but they can help improve the situation.

The experts also recommend that oncology nurses leverage online resources, such as, ONS Oral Anticancer Therapy Toolkit or OncoLink.org.

Some other resources to consider:

Medicare.gov

Healthcare.gov

Medicaid.gov

Medicareinteractive.org

Cancer Insurance Checklist

ONS Financial Toxicity Huddle Card

ONS Guidelines™ to Support Patient Adherence to Oral Anticancer Medications

Cancer and Careers

Triage Cancer

ACCC Financial Advocacy Tool

Cancer Support Community Financial Navigation

References

1. Gordon D. 50% of Americans now carry medical debt; a new chronic condition for millions. Forbes. October 13, 2021. Accessed September 26, 2022. https://bit.ly/3DU7fEg
2. Abrams HR, Durbin S, Huang CX, et al. Financial toxicity in cancer care: origins, impact, and solutions. Transl Behav Med. 2021;11(11):2043-2054. doi:10.1093/tbm/ibab091
3. Yabroff KR, Han X, Song W, et al. Association of medical financial hardship and mortality among cancer survivors in the United States. J Natl Cancer Inst. 2022;114(6):863-870. doi:10.1093/jnci/djac044
4. Fact sheet: the Inflation Reduction Act supports workers and families. News release. The White House. August 19, 2022. Accessed September 26, 2022. https://bit.ly/3xUu2fi