By Guest Blogger: Lisa DeFerrari
This article was originally published on After 20 Years Cancer Research Blog on February 6, 2021.
When I was treated for breast cancer in 1993, and again in 2005, I was fortunate to have good health insurance coverage. Being able to afford my treatment was never an issue.
But would my experience be the same today? More of us are finding that even having good health insurance does not necessarily protect against hefty premiums, deductibles and copays, which can still make treatment unaffordable.
The problem of financial toxicity has become one of the top issues that individuals dealing with cancer worry about. And, in the absence of comprehensive measures to address it, this a problem that continues to evolve and worsen.
In this post, the first in a 2-part series on financial toxicity, we’ll take a look at some of the major ways that financial toxicity comes into play today, how it impacts us and who is most affected.
Financial Toxicity Components
The term financial toxicity refers to problems related to the cost of medical care and is more likely to be experienced by individuals dealing with cancer than by others.
We first started hearing about financial toxicity roughly a decade ago. At that time, it was discussed mostly in relation to the extremely high prices of newer cancer drugs.
Many observers don’t find the prices being charged for cancer drugs to be justified. Pharmaceutical companies need to make a reasonable profit, but significant portions of the costs of developing new therapies are covered in other ways than through pricing.
Drug companies receive substantial tax breaks for research and development. And for cancer drugs, most of the basic research and thousands of clinical trials are paid for by the National Cancer Institute and foundations. I wrote about the issue of drug pricing in this post.
The high prices being charged for medications remains one of the top issues. But financial toxicity now encompasses many ways in which someone being treated for cancer may be hit with unexpected or unaffordable bills.
Impact extends beyond the costs of the care itself and may include additional costs such as transportation to numerous medical appointments or the cost of child care while at appointments. It may also include the loss of income while an individual is in treatment.
In addition, the impact is often long-term, either because some of the side effects of treatment have become chronic or because the cancer has become metastatic and treatment will always continue in some form. And some treatments for primary cancer, such as hormone therapies for early stage breast cancer, continue over many years.
Impact of Financial Toxicity on Health and Survival
How is the financial burden of cancer felt, beyond its impact on a person’s savings and income?
There is now growing recognition that financial toxicity has become an actual physical and emotional side effect of cancer treatment.
The physical impact can be major if treatment is less effective because you are unable to consistently purchase and take your medication.
And on the emotional side, financial distress can make dealing with a cancer diagnosis and treatment, already a stressful experience, even more so.
These factors, in turn, can reduce the length of time individuals survive after diagnosis and increase mortality rates. And quality of life, already strained, worsens. These are some of the ways financial toxicity is felt:
Tough Choices: Making decisions about cancer treatment often involves choices. For example, breast cancer patients who need surgery may have the choice of a lumpectomy or a mastectomy, with or without reconstruction. There are many factors that go into a decision like this. But for some, especially those with lower incomes, cost has become an important factor. And cost considerations may force a choice that the individual would not have preferred if cost had not been the driving issue.
Impossible Choices: Then there are the choices no one should have to make. Some patients are unable to afford both food for themselves and their families and the high out-of-pocket costs they must pay for their cancer medications. A study published in 2018 found that 8% of about 1,000 cancer survivors who participated in a national survey were unable to afford both food and their cancer treatment.
Survival and Mortality: In a study published a few years back, the risk of dying from cancer was found to be 80% higher over 5 years for cancer patients who filed for bankruptcy compared to cancer patients who did not. An earlier study by the same group had found that cancer patients were 2.5 times more likely to file for bankruptcy than individuals who had not had a cancer diagnosis. I wrote about those studies in this post.
Psychological Impact: It comes as no surprise that financial distress has a big impact on psychological well-being and quality of life. Studies have confirmed this, including one published last year that used validated patient-reported outcome measures to examine the link between financial toxicity and quality of life.
Who Is Most At Risk for Financial Toxicity?
It’s pretty hard these days to pinpoint any group, except perhaps the very wealthy, that is not at risk for financial toxicity. Studies have identified these groups as being especially affected:
People of Color: Numerous studies have found that people of color are disproportionately affected by financial toxicity. As an example, an analysis of data from the Carolina Breast Cancer Study found that Black women experience significantly worse financial impact from breast cancer compared with white women. This conclusion was after adjusting for age, stage at diagnosis and treatment.
Younger People: For some time, studies have been showing major impact for younger people. For example, a recent study reported in a journal of the American Association for Cancer Research found that young women with breast cancer experienced substantial financial difficulties in the wake of a breast cancer diagnosis, even if they had stable jobs with insurance benefits.
Seniors: More recent studies are now showing a disproportionate impact for seniors. This is because many of the newer cancer medications–which also tend to be the most costly–are given in pill form, rather than intravenously at the hospital or doctor’s office. And Medicare, which provides insurance coverage for most U.S. citizens starting from age 65, covers much less of the cost of prescription medications. A recent article in Kaiser Health News reports on the impact on seniors.
People with Metastatic Cancer: Individuals with metastatic or advanced cancer are especially vulnerable to financial toxicity. A review article in the Journal of Oncology Practice summarizes the reasons financial toxicity is particularly burdensome for this group, noting that metastatic cancer is a resource-intensive condition with expensive treatment and consistent, high-intensity monitoring.
We’ve discussed often on this blog many of the newer targeted and immune system therapies for breast cancer and other cancers. These therapies are making a difference already and hold a lot of potential to help more people in the future. But they are enormously expensive. And if individuals dealing with cancer either can’t access them at all because the out-of-pocket costs are prohibitive or they are driven into bankruptcy in the process, causing serious harm to themselves and their families, then nothing is accomplished and we’ve actually gone backwards.
There have been lots of studies over the last decade looking into financial toxicity. I’ve linked to a few in this article as examples but there are many more. The studies are valuable but we can’t afford more delay in seriously addressing this problem.
As the problem of financial toxicity has many components, the solutions need to be multi-faceted too. In the second post in this series, we look at some of the approaches that have been proposed and the types of resources that you may be able to access now if you’re in the position of having to deal with financial toxicity.
Lisa DeFerrari is a former VBCF Board member (2014-19) and volunteer extraordinaire. She is a cancer research advocate who was diagnosed with breast cancer more than 20 years ago at the age of 35. She led VBCF’s Advocacy committee for several years and continues to be an active patient advocate breast cancer research reviewer for the Department of Defense Breast Cancer Research Program. Lisa has a master’s degree in business administration and worked for the federal government in Washington, DC for 30 years.
VBCF advocates for policy solutions related to the financial burdens experienced by breast cancer patients both at the state and federal levels. Most recently, VBCF joined the Virginia Family Friendly Economy Coalition to advocate for the establishment of a paid family and medical leave program for all Virginians. At the federal level, we continue to advocate for the passage of the Metastatic Breast Cancer Access to Care Act which would waive the waiting periods for Medicare and Social Security Disability benefits for those with metastatic breast cancer.
Photo by Christina @ wocintechchat.com on Unsplash
