Lymphedema Insurance Coverage Lacking
Updated on November 14, 2024
In the United States, less than 12% of people with health insurance and even fewer people without health insurance have access to specific compression treatments and surgery for lymphedema, according to a study.
“Cross-Sectional Analysis of Insurance Coverage for Lymphedema Treatments in the United States” was published on June 7, 2023, by the journal JAMA Surgery.
And while the Lymphedema Treatment Act goes into effect Jan. 1, 2024, its aim is to improve insurance coverage for doctor-prescribed compression supplies, like wraps, sleeves, and bandages, so it’s unlikely to spur insurers to expand coverage for surgery.
Lymphedema causes and rates
Lymphedema happens when the lymph system is damaged or can’t move lymph fluid fast enough, so the fluid builds up in an area of the body. Breast cancer surgery and radiation can damage lymph channels, causing lymphedema to develop in an arm or hand, though it also may occur in the breast, chest, armpit, trunk, or back.
Research shows that the most common cause of lymphedema in the United States is damage to the lymph system during cancer treatment:
about 30% of people diagnosed with breast cancer develop lymphedema
about 40% of people diagnosed with cervical cancer develop lymphedema
about 75% of people diagnosed with head and neck cancer develop lymphedema
Lymphedema treatments
According to the researchers who wrote the paper on insurance coverage for lymphedema, the current standard of care is complete decongestive therapy, a combination of techniques that include compression wraps and bandages, elevation, and massage. Pneumatic pumps that apply pressure to the area with lymphedema are an important add-on.
Surgery, including removing the affected tissue and transferring lymph nodes from another area of the body to the affected area, isn’t the standard of care yet, but a growing body of research suggests that it is effective.
About the study
The researchers reviewed insurance coverage offered in 2022 for several lymphedema treatments by 67 health insurance companies. These companies make up nearly 90% of the health insurance market in the United States.
The treatments reviewed for coverage were:
pneumatic pumps
surgery to remove affected tissue
lymph node transfer surgery
While most insurance companies covered pneumatic pumps, about 20% didn’t have a policy for coverage.
About 19% of the companies offered coverage for surgery to remove the affected tissues, and only 7.5% offered coverage for lymph node transfer surgery.
“The present study demonstrates that only one in five health insurance companies in the United States cover [surgery to remove the affected tissue], and only one in 10 cover [lymph node transfer] procedures,” the researchers wrote. “Based on market-share data, this means less than 12% of individuals with health insurance, and even fewer patients without health insurance, have access to pneumatic compression and surgical treatments for lymphedema. This stark inadequacy of insurance coverage must be addressed through research efforts and policy changes to mitigate health disparities and promote health equity among patients with lymphedema in the United States.”
What you can do
“Most of the people who have questions about coverage for lymphedema treatments are looking for coverage for compression garments,” said Joanna Doran, Esq., CEO of Triage Cancer, a non-profit organization that offers free education on the practical and legal issues that come up after a cancer diagnosis. “So the Lymphedema Treatment Act is a step forward, in that it requires Medicare coverage of those items. But we don’t have final rules yet on what that’s going to look like.”
Doran also pointed out that the Lymphedema Treatment Act only applies to Medicare. Still, when Medicare expands coverage, many private insurers do the same.
“So it’s a step in the right direction, but by no means does it solve all the issues around access to lymphedema treatment,” she added.
Doran emphasized that it’s extremely important for people and their doctors to understand the insurance appeals process so people can get access to the treatments they need.
“When an insurance company denies care or coverage for that care, we shouldn't take no for an answer,” she said, “because we know that when patients actually appeal those denials of coverage, more than 50% of the time those appeals are actually being overturned.”
Listen to The Breastcancer.org Podcast episode focusing on paying for breast cancer care.
