Most Americans Are Not Properly Insured for Surgical Lymphedema Treatment

In the United States, fewer than 12% of individuals with health insurance have access to surgical treatments for lymphedema. For patients without insurance, the accessibility is even worse, according to findings from a cross-sectional analysis of insurance reimbursements that were published in JAMA Surgery.¹

Further, only about 80% of insurance companies provide coverage with preauthorization for nonprogrammable or programmable pneumatic compression pumps. These pumps are considered a critical component of standard of care for lymphedema, meaning that 1 in 5 covered patients in the United States still lack adequate coverage for frontline lymphedema treatment.

The analysis also showed that patients living in the West, Southwest, and Southeast have the worst coverage rates.

According to study authors, these findings illustrate key disparities in the health system and the need for better policies.

“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,” they wrote.

Key Findings

Overall, 67 different health insurance companies were included in the analysis—representing 88.7% of the US market share. Most of these companies covered nonprogrammable (n = 55; 82.1%) and programmable pneumatic compression (n = 53; 19.4%).

However, only 13 (19.4%) companies offered coverage for debulking procedures, which involves removing the skin and subcutaneous tissue to reduce how much of the limb is impacted by lymphedema. Most insurers deny coverage (43.3%) for debulking procedures because it is investigational, and 25.4% of companies had no established policy.

As the authors explained, conservative therapy can help reduce the build-up of fluid in the affected limbs, but debulking is necessary to decrease the amount of fibroadipose tissue classically seen in late-stage disease, making it “irreplaceable” in lymphedema treatment. Despite this, coverage is minimal. Even among those companies that do offer coverage (n = 13), 6 insist that patients undergo a previous trial of conservative treatments beforehand.

Similarly, only 5 (7.5%) companies offered coverage for physiologic procedures, or the restoration of lymphatic function. These procedures typically involved either bypassing through the obstructed lymphatics or placing functional lymph nodes into the areas that have been affected. Approximately half (49.2%) of insurers have policies in place to deny coverage for these procedures.

Despite their novelty, the study authors argued that these surgical approaches are necessary to prevent the onset of lymphedema-related physical and cognitive dysfunction.

Methodology

Investigators assessed insurance reimbursements for lymphedema treatments in 2022. The analysis included the top 3 insurance companies per each state. Insurers whose state market share was less than 5% were excluded.

Investigators were able to characterize each insurance companies’ medical policies based on a combination of information on their website and telephone interviews with representatives.

Significance

Approximately 1 in 1000 individuals in the United States are living with lymphedema, which is a debilitating condition that frequently impacts patients with cancer. Approximately 30% of patients with breast cancer who undergo axillary lymph node dissection with adjuvant radiation develop lymphedema. Similarly, the rate of lymphedema is estimated to be about 40% among patients with cervical cancer and 75% among patients with head and neck cancer—who undergo inguinal and cervical lymph node dissection, respectively.

For patients who develop lymphedema, the current standard of care is complete decongestive therapy with elevation, compression, and massage. The problem with complete decongestive therapies, and conservative treatment such as therapist-directed exercise and pneumatic compression devices, are that they are time consuming. Moreover, they must be continued indefinitely.

These findings underscore that Americans need better access to care. Authors pointed out that the annual out-of-pocket cost for conservative and surgical lymphedema-treatments are estimated to be at least $1000 for patients with breast cancer-related lymphedema.² In another study, conducted by Finkelstein, it was revealed that only approximately 38% of insurance companies offer coverage for complete decongestive therapy, meaning that less than half of Americans have access to standard-of-care lymphedema treatments.³

“The present study demonstrates that only 1 in 5 health insurance companies in the United States cover debulking procedures, and only 1 in 10 cover physiological procedures,” they concluded. “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.”

They concluded by asserting that the current lack of lymphedema coverage requires significant attention from researchers and lawmakers alike.

Reference

1. Lynn JV, Hespe GE, Akhter MF, David CM, Kung TA, Myers PL. Cross-sectional analysis of insurance coverage for lymphedema treatments in the United States. JAMA Surg. 2023;158(9):920-926. doi:10.1001/jamasurg.2023.2017
2. Dean LT, Moss SL, Ransome Y, et al. “It still affects our economic situation”: long-term economic burden of breast cancer and lymphedema. Support Care Cancer. 2019;27(5):1697-1708. doi:10.1007/s00520-018-4418-4
3. Finkelstein ER, Ha M, Hanwright P, et al. A review of American insurance coverage and criteria for conservative management of lymphedema. J Vasc Surg Venous Lymphat Disord. 2022;10(4):929-936. doi:10.1016/j.jvsv.2022.03.008