In the fight against prostate cancer, its financial impact on the patient is often not discussed. In this newsletter about the financial toxicity of prostate cancer, we'll look at how dealing with prostate cancer creates severe challenges for patients, including bankruptcy and poor outcomes.
Financial toxicity
Financial toxicity(FT) is the adverse financial effects patients incur related to cancer treatment and includes:
cost of diagnosis
cost of treatment
lost wages
parking and transportation expenses
medical debt, including bankruptcy
psychological distress due to the financial burden1
Prostate cancer is the second most common malignancy in the United States, and oral prescription drug costs are highest for female breast, leukemia, lung, and prostate cancer patients.2
An article published in the Urology Times reports that:
15% to 20% of men with localized prostate cancer experience FT.
Men who underwent external beam radiation therapy report worse FT than those who underwent radical prostatectomy or active surveillance.
Men with more aggressive prostate cancer have more than twice the risk of FT compared with patients with less aggressive prostate cancer.
New and expensive treatments for metastatic castrate-resistant prostate cancer have resulted in some patients paying high out-of-pocket payments.
Among commercially insured patients with metastatic hormone-sensitive prostate cancer, novel hormonal therapy, such as enzalutamide and abiraterone, pose significantly higher out-of-pocket costs than androgen deprivation therapy and chemotherapy.
High out-of-pocket costs for oral anticancer agents are associated with poor treatment compliance.
54% of men with metastatic prostate cancer reported financial toxicity, according to a 2023 survey-based study published in "The Journal of Urology."3
Incidence and prevalence of bankruptcy
The National Cancer Institute's PDQ cancer information summary about financial toxicity provided some concerning facts about FT and its relationship to bankruptcy.
One of the few studies to measure the incidence of financial hardship reported that 1.7% of cancer survivors filed for bankruptcy in the 5 years after diagnosis.
Cancer survivors were 2.7 times more likely to file for bankruptcy than individuals without a cancer history.
Other studies have reported a prevalence of bankruptcy ranging from 1.2% to 3% among cancer survivors.4
Even more concerning is a 2016 study examining how filing for bankruptcy affects cancer patients' survival. They studied records of people with cancer in Washington and linked them to bankruptcy records.
They compared patients who filed for bankruptcy with those who didn't while considering factors like age, gender, and cancer stage. They found that patients who went bankrupt had a higher risk of dying than those who didn't. This risk was even higher for certain cancers, specifically colorectal, prostate, and thyroid.
The study concludes that severe financial problems after a cancer diagnosis could lead to a higher chance of dying. More research is needed to understand this and find ways to help cancer patients facing financial difficulties.5
Medicare Part D and financial toxicity
With the rise in expensive oral anticancer medications, there's a growing recognition of inequalities in coverage for these types of drugs, particularly for Medicare beneficiaries.
A spotlight shines on Medicare Part D, where the costs for cancer medications can be high and, shockingly, without any annual maximum limit on out-of-pocket expenses.
A study identified Medicare Part D drug plans available in 2023 using the online Medicare Part D Plan Finder. They sampled plan options for 12 different zip codes within the United States and compared drug costs between a university-sponsored specialty cancer pharmacy and an online mail-order pharmacy.6
They looked at out-of-pocket costs for two common prostate cancer drugs, enzalutamide, and abiraterone. On average, 24 Part D drug plans were available for each zip code. Comparing prices in these plans showed:
Median yearly out-of-pocket costs were $11,626 for enzalutamide and $9,275 for abiraterone.
Annual out-of-pocket costs ranged from $9,854 to $13,061 for enzalutamide and $1,379 to $13,274 for abiraterone.
By choosing a different drug plan, potential out-of-pocket cost savings were $2,512 for enzalutamide and $9,321 for abiraterone.
And the median difference in out-of-pocket cost between enzalutamide and abiraterone was $8,758.
In a video interview on UroToday.com, Benjamin Pockros, M.D., lead author of this study, said, "Cancer medications in this country are pretty egregiously expensive, and it's actually particularly true in urology."
Since most advanced prostate cancer patients are over age 65 and insured by Medicare with Part D plans, he wanted to use the study to highlight how they can save thousands of dollars using the Medicare Part D Plan Finder to help them choose their drug plan.
I encourage you to watch the video as Dr. Pockros walks you through the relatively simple process of examing Part D drug costs in this online tool.
Relief in sight
The Inflation Reduction Act of 2022 pledges to reduce healthcare costs for many Americans, especially Medicare beneficiaries. In 2023, there is no maximum annual out-of-pocket expense once you enter the "catastrophic coverage phase" of Medicare Part D's drug coverage.
But thankfully, this changes with the Inflation Reduction Act, which gradually phases in cost savings for Medicare Part D enrollees. By 2025, a Part D enrollee will only pay a maximum of $2000 in out-of-pocket drug expenses for the entire year!
Other ways to lower financial toxicity
Not all people with cancer who experience financial toxicity are Medicare beneficiaries, and there are other ways to help lower financial toxicity. First and foremost, one must consider the role physicians and other healthcare providers can play in reducing patient costs.
Doctors are, for the most part, loathe to discuss drug costs during a patient visit. They only know how much drugs cost each patient if the patient tells them, and patients are often on several medications prescribed by different specialists. It's a complicated situation.
Ideally, every cancer care center should have a pharmacy benefits manager and health insurance coordinator as part of their multidisciplinary team. Then the healthcare provider could refer the patient to one or both of those managers should cost issues arise.
Even without those benefit coordinators, physicians and other healthcare providers should be mindful that their patients often face financial toxicity. For primary care providers, a simple starting point is to use generic drugs whenever possible. Even though this doesn't guarantee an inexpensive medication for their patient, it's an excellent place to start.
For practitioners in a cancer care center, a simple place to start is by following guidelines established by organizations such as the "American Urologic Association" and the "National Comprehensive Cancer Network."
By following these guidelines, practitioners may avoid ordering tests or diagnostic procedures that won't change the management or outcomes for their patients.
Communication between practitioners and patients about direct and indirect treatment costs is vital to help both make better-informed decisions.
Online resources
ZERO Prostate Cancer is a non-profit with a mission to end prostate cancer. They offer a free program called ZERO360: Comprehensive Patient Support, a partnership with the Patient Advocate Foundation.
"ZERO360 connects patients with trained case managers who can help them find co-pay and other financial assistance to address medical debt and other costs incurred during treatment."
The Prostate Cancer Foundation offers a financial resources web page with multiple online resources for help with the costs of co-payments, treatments, and medications.
Until next time, I wish all of you the very best.
Much love,
Keith
Alexandria and Deborah. "Financial Toxicity Is a Growing Concern in Urologic Oncology." Urology Times, Urology Times, June 23, 2023, https://www.urologytimes.com/view/financial-toxicity-is-a-growing-concern-in-urologic-oncology.
Mariotto, Angela B., et al. "Medical Care Costs Associated with Cancer Survivorship in the United States." Cancer Epidemiology, Biomarkers & Prevention, no. 7, American Association for Cancer Research (AACR), July 2020, pp. 1304–12. Crossref, doi:10.1158/1055-9965.epi-19-1534.
Joyce, Daniel D., et al. "Coping Mechanisms for Financial Toxicity Among Patients With Metastatic Prostate Cancer: A Survey-Based Assessment." Journal of Urology, no. 2, Ovid Technologies (Wolters Kluwer Health), Aug. 2023, pp. 290–98. Crossref, doi:10.1097/ju.0000000000003506.
PDQ® Adult Treatment Editorial Board. PDQ Financial Toxicity and Cancer Treatment. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-hp-pdq. Accessed August 8, 2023. [PMID: 27583328 ]
Ramsey, Scott D., et al. "Financial Insolvency as a Risk Factor for Early Mortality Among Patients With Cancer." Journal of Clinical Oncology, no. 9, American Society of Clinical Oncology (ASCO), Mar. 2016, pp. 980–86. Crossref, doi:10.1200/jco.2015.64.6620.
Pockros B, Shabet C, Stensland K, Herrel L. Out-of-Pocket Costs for Prostate Cancer Medications Substantially Vary by Medicare Part D Plan: An Online Tool Presents an Opportunity to Mitigate Financial Toxicity. Urology Practice. Published online June 22, 2023: 10.1097/UPJ.0000000000000421.
Thanks for bringing up the financial toxicity issue and prostate cancer. It holds true even in patients with low-risk Gleason 6 disease who opt for Active Surveillance, observing not treating the cancer.
We're told that our cancers may never need to be treated.
But patients on AS can experience financial toxicity in the form of job discrimination and insurance bias.
I experienced the latter. Seven companies declined to sell me term insurance because I opted to not treat my cancer, which was diagnosed 13 years ago and never treated.
There is a movement to rename Gleason 6 as a noncancer, in part, to prevent financial toxicity and also to reduce anxiety levels, which we call anxious surveillance.
As a patient I co-wrote a paper about this with several doctors that appeared in 2022 in the Journal of Clinical Oncology. It was the most-read paper in the journal. https://ascopubs.org/doi/full/10.1200/JCO.22.00123?role=tab
Doctors are divided on the issues.
I followed up with a survey of 450 patients conducted by several other patient advocates and doctors that was a poster in February at the American Society of Clinical Oncology Meeting. I shared the findings here: https://howardwolinsky.substack.com/p/part-i-denial-isnt-just-a-river-in