Breast cancer patients weigh in on addressing financial burdens

March 06, 2019

A qualitative study led by researchers at the Johns Hopkins Bloomberg School of Public Health yielded nine patient-driven recommendations across circumstances that include changes to insurance, supportive services and financial assistance to reduce long-term, breast cancer-related economic burden.

The study appears online March 6 in the journal Cancer.

U.S. breast cancer patients experience considerable economic burdens compared with those who have other types of cancer. The financial burdens are often exacerbated for patients who are managing treatment side effects, particularly breast cancer-related lymphedema, swelling of the arms or torso commonly caused by the removal of the lymph nodes during breast cancer surgery.

Over 250,000 new breast cancer cases are diagnosed each year in the U.S. Lymphedema affects nearly 35 percent of U.S. breast cancer survivors, and results in an estimated $14,877 in out-of-pocket costs in the first two years of a diagnosis for patients who develop lymphedema. Previous research suggests that 10 years post-diagnosis, breast cancer survivors with lymphedema have over double the health care costs as those not affected by lymphedema.

"No one should have to make a choice between their health and their money. Yet breast cancer survivors face incredibly high prices that can lead to severe financial hardships, even bankruptcy," says lead author Lorraine T. Dean, ScD, assistant professor in the Bloomberg School's Department of Epidemiology. "These recommendations offer ways to adapt a range of policies and practices that would make it more likely that breast cancer survivors can afford and attain the care they need."

Previous studies of breast cancer patients focused on provider and insurer perspectives on reducing costs, but not the patient, notes Dean. "This study offered breast cancer survivors a voice to tell us what they think should be done to make their lives better," says Dean.

For the study, interviews were conducted with 40 long-term breast cancer survivors from New Jersey and Pennsylvania in 2015. Participants were chosen to ensure a range of ages, lifestyles and severity of lymphedema. Of the 40 participants, 24 had lymphedema. The interviews were designed to better understand the financial problems participants faced after cancer, what types of issues they may have had with insurers, who they asked for help and what they thought should happen so that future breast cancer survivors could avoid high costs.

The interviewees offered nine actionable recommendations: Previous recommendations included affordable insurance, prompt information on costs and access to financial navigation and peer support. In this study, recommendations include institutional changes and policies that patients see as setting or driving costs.

Patient-driven recommendations to keep insurance costs low have been criticized for potentially driving up costs for insurers. As a counter argument, the authors offer an example: In one state, expanding coverage for lymphedema services and treatment lowered patient out-of-pocket costs and lymphedema-related hospitalizations, while having a less than 0.1 percent impact on costs for insurance claims and less than a 0.2 percent impact on insurance premiums after 10 years.

Several states (California, Louisiana, Maryland, North Carolina and Virginia) have passed legislation that expands lymphedema treatment coverage under existing insurance. Congress has considered, but not yet passed, legislation that would do the same across the nation.

Survey participants offered several ideas for changes to private business services and nonprofits. For example, mortgage deferment services, which are currently used for other reasons besides health, could be used to reduce expenses that could then be used for cancer treatment.

While many nonprofits currently have charitable assistance programs, study participants suggested that eligibility for assistance be determined by whether or not the patient has access to additional resources, rather than on poverty guidelines. Additionally, physicians and health providers could make referrals for financial counseling services during the course of care.

The researchers suggest that without changes, the out-of-pocket costs will continue to pose a challenge for the growing number of breast cancer survivors in the U.S.
-end-
"Patient Recommendations for Reducing Long-Lasting Economic Burden After Breast Cancer" was written by Lorraine T. Dean, Shadiya L. Moss, Sarah I. Rollinson, Livia Frasso Jaramillo, Raheem J. Paxton, Jill T. Owczarzak

The study was supported by the National Cancer Institute (K01CA184288), the National Institute of Mental Health (R25MH083620), the Johns Hopkins University Center for AIDS Research (P30AI094189), the Sidney Kimmel Cancer Center (P30CA006973) and the National Institute on Drug Abuse (T32DA031099)

Johns Hopkins University Bloomberg School of Public Health

Related Breast Cancer Articles from Brightsurf:

Oncotarget: IGF2 expression in breast cancer tumors and in breast cancer cells
The Oncotarget authors propose that methylation of DVDMR represents a novel epigenetic biomarker that determines the levels of IGF2 protein expression in breast cancer.

Breast cancer: AI predicts which pre-malignant breast lesions will progress to advanced cancer
New research at Case Western Reserve University in Cleveland, Ohio, could help better determine which patients diagnosed with the pre-malignant breast cancer commonly as stage 0 are likely to progress to invasive breast cancer and therefore might benefit from additional therapy over and above surgery alone.

Partial breast irradiation effective treatment option for low-risk breast cancer
Partial breast irradiation produces similar long-term survival rates and risk for recurrence compared with whole breast irradiation for many women with low-risk, early stage breast cancer, according to new clinical data from a national clinical trial involving researchers from The Ohio State University Comprehensive Cancer Center - Arthur G.

Breast screening linked to 60 per cent lower risk of breast cancer death in first 10 years
Women who take part in breast screening have a significantly greater benefit from treatments than those who are not screened, according to a study of more than 50,000 women.

More clues revealed in link between normal breast changes and invasive breast cancer
A research team, led by investigators from Georgetown Lombardi Comprehensive Cancer Center, details how a natural and dramatic process -- changes in mammary glands to accommodate breastfeeding -- uses a molecular process believed to contribute to survival of pre-malignant breast cells.

Breast tissue tumor suppressor PTEN: A potential Achilles heel for breast cancer cells
A highly collaborative team of researchers at the Medical University of South Carolina and Ohio State University report in Nature Communications that they have identified a novel pathway for connective tissue PTEN in breast cancer cell response to radiotherapy.

Computers equal radiologists in assessing breast density and associated breast cancer risk
Automated breast-density evaluation was just as accurate in predicting women's risk of breast cancer, found and not found by mammography, as subjective evaluation done by radiologists, in a study led by researchers at UC San Francisco and Mayo Clinic.

Blood test can effectively rule out breast cancer, regardless of breast density
A new study published in PLOS ONE demonstrates that Videssa® Breast, a multi-protein biomarker blood test for breast cancer, is unaffected by breast density and can reliably rule out breast cancer in women with both dense and non-dense breast tissue.

Study shows influence of surgeons on likelihood of removal of healthy breast after breast cancer dia
Attending surgeons can have a strong influence on whether a patient undergoes contralateral prophylactic mastectomy after a diagnosis of breast cancer, according to a study published by JAMA Surgery.

Young breast cancer patients undergoing breast conserving surgery see improved prognosis
A new analysis indicates that breast cancer prognoses have improved over time in young women treated with breast conserving surgery.

Read More: Breast Cancer News and Breast Cancer Current Events
Brightsurf.com is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.