Breast Cancer Patients Make Recommendations to Address High Health Care Costs

Breast cancer patients face an especially high cost of health care compared with people who have other types of cancer, according to authors of a paper published March 6, 2019 in Cancer, a peer-reviewed medical journal of the American Cancer Society. Those costs rise even higher for those who have lymphedema, a common side effect of treatment for breast cancer that causes painful swelling in the arms, legs, or torso.

There are more than 3 million breast cancer survivors in the US. Almost 35% of them, about 1 out of 3, have lymphedema, and the study authors estimate they face $14,877 in out-of-pocket costs in their first 2 years of diagnosis. Even up to 10 years after diagnosis, their out-of-pocket health care costs are more than double the costs for those without lymphedema.

Many public health insurance plans do not cover some home treatments for lymphedema -- for example, compression bandages, sleeves, or stockings. So far, recommendations for ways to reduce the financial burden have mostly come from health care providers and focused on how patients are billed for services. This study asked the patients themselves to recommend ways health care systems, businesses, and nonprofit organizations could help them manage costs that come from health care bills as well as other expenses that affect work and home responsibilities.

The researchers interviewed 40 women with breast cancer, 24 of whom had lymphedema. They organized their responses into 9 recommendations:

1. Provide assistance with understanding what is covered under insurance and how to navigate changes when switching to a new insurance provider.
2. Ensure high-quality insurance that covers required and elective cancer-related services with low co-pays, premiums, and deductibles.
3. Expand insurance coverage for lymphedema-specific materials and lymphedema management, including long-term physical therapy and complementary and alternative medical treatments.
4. Address psychosocial costs by expanding support groups and buddy services.
5. Expand the availability of home health care services after cancer treatment.
6. Provide domestic assistance with household chores, childcare, and transportation.
7. Expand eligibility for financial aid and social services to those who are not in poverty.
8. Provide financial counseling or navigation throughout the diagnosis and treatment process.
9. Expand policies that protect employment and medical leave to offer more acceptable leave time.

A growing problem

The number of breast cancer survivors is expected to increase from 3.1 million to 4.5 million in the next 10 years. The researchers write, “Without changes, out-of-pocket costs will continue to be a challenge for the growing number of breast cancer survivors in the United States.”

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

What we do

• The American Cancer Society’s advocacy affiliate, Cancer Action Network works in every state and in Congress to expand health care options and protect existing laws that help patients get true access to the care they need.
• Our Road To Recovery program provides rides to and from cancer-related medical appointments for patients who otherwise might not be able to get there.
• The American Cancer Society’s lodging programs provide a place to stay when getting the best care requires traveling far from home.
• Our Reach To Recovery program connects newly diagnosed breast cancer patients with trained volunteers who are themselves breast cancer survivors.
• tlc (Tender Loving Care) is an American Cancer Society publication that offers products to help women facing cancer treatment cope with some side effects of cancer by making hard-to-find products affordable and readily available for purchase from the privacy of their own homes.
• Our Patient Navigator Program connects patients and caregivers with a personal cancer guide at a cancer treatment center. For more information, or for any information or questions about cancer, call one of our Cancer Information Specialists at 1-800-227-2345.