FRIDAY, Aug. 24, 2018 -- Surviving breast cancer is certainly its own reward, but a new study finds that many who do are saddled with thousands in out-of-pocket expenses for years.
On average, breast cancer survivors get hit with an extra $1,100 in yearly out-of-pocket cancer-driven costs, researchers found.
But interviews with 129 breast cancer survivors further revealed that the so-called "financial toxicity" of breast cancer is an especially burdensome problem for those who, following treatment, end up with a side effect known as lymphedema.
The condition is sometimes triggered by cancer surgery, chemotherapy, radiation and/or infection, and it is characterized by chronic inflammation due to the build-up of lymphatic fluid throughout the upper body.
For these patients, who make up 35 percent of the nation's 3.5 million breast cancer survivors, out-of-pocket expenses rocket up to roughly $2,300 per year.
"Even 10 years after breast cancer treatment, women who have lymphedema have over double the yearly health care costs compared with women who don't have lymphedema," said study author Lorraine Dean. She's an assistant professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health in Baltimore.
Dean noted that the "higher costs for women with lymphedema is only partially due to costs for actual lymphedema-related needs," with more study needed to better understand why the condition drives up costs so dramatically.
But what's already clear, said Dean, is that "high costs leads those with lymphedema to not manage their lymphedema as well as they could, and even affects women who have insurance. "[So] we need better policies to protect people from high costs, and that includes policies that offer more comprehensive insurance coverage for the aftereffects of cancer treatment," she said.
Dean and her colleagues noted that prior efforts to assess cancer-related costs either focused on patient expenses that occurred shortly after a diagnosis or those processed through insurance claims.
But to gain better insight into out-of-pocket expenses, the team studied a pool of cancer survivors in New Jersey and Pennsylvania. On average, the women were 63 years old and 12 years past their initial cancer diagnosis, and all had insurance. Half of them had lymphedema.
For six months, the women noted any related expenses, including visits to health care providers, drugs and physical fitness costs. Those with lymphedema were asked to tally condition-specific costs, such as for compression garments or bandages.
The inability to perform daily tasks was also noted, quantified and tallied as a "productivity loss" in the final expense estimate, as were three months of paid receipts and patient estimates for three additional months of likely future expenses.
When all such expenses were added, breast cancer patients without lymphedema were found to pay an average of about $2,800 a year more than a decade after their diagnosis, compared with more than $3,300 among those with lymphedema.
The findings were published recently in the Journal of Supportive Care and Cancer.
Dean said those in financial straits could seek help from organizations such as the American Cancer Society, Susan G. Komen for the Cure, LIVEstrong, CancerCare and the National Lymphedema Network. "But most of the help that people can get ends closer to the time of diagnosis or treatment," she warned, "so while these programs help prevent people from having greater burden early on in their care, they may not be as helpful for women facing long-term costs.
"Rather than putting the burden on patients to navigate the high costs, we should be looking to make changes to keep costs lower," Dean added.
Sarah Hawley is an associate professor of internal medicine at the University of Michigan Medical School. She agreed that while there is increasing awareness about the problem, "resources for patients are still limited," she said.
"I think this study supports the need for patient-focused tools and resources to help them prepare for the potential of long-term financial impact, and to support them having those discussions with providers throughout their cancer care," Hawley said.
Susan Brown, senior director for education and patient support with Susan G. Komen for the Cure in Dallas, agreed that "financial stress is a reality for many people living with breast cancer."
But she suggested that in addition to reaching out to organizations such as her own, patients seeking financial help should explore options with a wide range of caregiver contacts, including hospital discharge planners and patient service officers.
"A doctor, nurse or social worker may have information about financial resources," Brown said. "Most hospitals and treatment centers have financial counselors. They can help people understand the details of their insurance paperwork and give an estimate of the cost of the treatment."
There's more on one resource for financial assistance at Susan G. Komen for the Cure.
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