A cancer diagnosis is emotionally, physically, and in many cases, financially challenging. According to the NCI, “Some cancer survivors report spending more than 20% of their annual income on medical care.”

For many with and without insurance, the cost of care can lead to what is known as financial toxicity. Financial toxicity is a term used to describe financial stress of out-of-pocket costs such as copayments, cost of medicines, insurance deductibles, and coinsurance costs. In addition to those costs, patients and their families also manage the cost of transportation to appointments, childcare during medical appointments and treatment, possible loss of employment, and other unexpected expenses to manage side effects from treatment.

Understanding the Consequences of Financial Toxicity

Sadly, financial toxicity is overwhelming for many. According to recently published research, financial burden has major consequences for patients continuing with their treatment and for long-term outcomes. In this new study, the amount of out-of-pocket costs for targeted therapies was associated with a significant difference in patient outcomes for people with EGFR+ or ALK+ lung cancer in Washington State. People with the highest out-of-pocket costs for their lung cancer medication were most likely to miss doses or stop taking the drug. Unfortunately, this was also associated with a decrease in length of survival. In another recent study from Johns Hopkins University, financial toxicity was linked to reduced quality of life for people with lung cancer.

Dr. Bernardo Goulart, the principal investigator of the Washington State study, explained the importance of the work saying, “Previous studies have shown that Medicare part D beneficiaries are less likely to take the oral cancer drugs when their out-of-pocket costs for their medications are exceedingly high. Our study is the first to link higher patient out-of-pocket costs for tyrosine kinase inhibitors with patients not taking medications as directed, a higher risk of stopping medication, and shorter overall survival. While this needs to be confirmed in larger studies, our findings help support changes in health policy to: (1) reform Medicare part D coverage for oral cancer drugs; and (2) develop new policies to reduce prices of high-cost cancer drugs across payers and industry.” This study was not able to gather information about who accessed assistance so future studies are needed to understand the role of financial navigation in reducing financial toxicity.

Driving Change

As patient advocates, we continue to work with all sides of our healthcare system to address issues like this that impact patient outcomes. You can read about the policy updates and sign on letters GO2 for Lung Cancer has addressed in 2020 and 2021 on our policy letters webpage.

As a Member of the Coalition to Improve Access to Cancer Care (CIACC), GO2 for Lung Cancer is advocating to advance the Cancer Drug Parity Act that was introduced in the last Congress as S. 741/H.R. 1730. This bipartisan bill could substantially help patients who are unable to access their medications by standardizing cost-sharing systems across intravenous (IV), oral, and other self-administered treatments.

Many patients with cancer today are covered under insurance policies which require patients to pay higher out-of-pocket costs for anticancer treatments delivered orally instead of intravenously (IV). This is because insurance medications taken by mouth are covered under prescription drug benefits rather than the medical benefits of insurance plans. The lack of “oral parity” has become a critical advocacy point for GO2 for Lung Cancer and the broader cancer coalitions.

We have also partnered with other advocacy groups on a letter specifically asking for reform on out-of-pocket costs in Medicare Part D – the focus of Dr. Goulart’s study.  Along with cost of care issues, our policy work covers many areas important to people with lung cancer. Recent policy letters include advocating for comprehensive health coverage and clinical trial costs along with funding lung cancer research.

 Finding Support

The GO2 for Lung Cancer HelpLine aids patients and caregivers by identifying appropriate resources for all aspects of care, including costs. Our support staff can help by providing information about patient assistance funds through organizations like PAN Foundation, CancerCare, Patient Advocate Foundation (PAF) and pharmaceutical assistance programs. We also seek to empower patients to reduce their own risk of financial toxicity by encouraging them to work with financial navigators at their cancer centers to fully understand their insurance plans and options before selecting or changing plans. An excellent resource to learn more about insurance and other practical matters is Triage Cancer.