Coverage for Lymphedema

Insurance coverage for the treatment of lymphedema is problematic despite advocacy by patients and providers. Coverage varies among and within payers, based on site or sites of involvement and/or based on underlying cause. This is at least partially related to the “lack” of genuine understanding about lymphedema within the American medical profession in general, including those physicians who are responsible for setting coverage policy for health plans It is also due to the lack of a strong scientific base of evidence to support the efficacy of treatment. Such evidence should be accumulated as more providers collect and disseminate data and participate in clinical research protocols.

Recent improvements have been seen in coverage for lymphedema following mastectomy because of the Women’s Health and Cancer Rights Act of 1998. This law amended the Employee Retirement Income Security Act of 1974 (ERISA) and subpart 3 of part B Title XXVII of the Public Health Service Act. It requires insurers offering individual health insurance coverage, as well as all group health plans that provide medical and surgical benefits with respect to mastectomy, to provide coverage for:

  • Reconstruction of the breast on which the mastectomy was performed.
  • Surgery and reconstruction of the breast to produce a symmetrical appearance.
  • Prostheses and physical complications for all stages of mastectomy, including lymphedema, in a matter determined in consultation with the attending physicians and the patient.

Such coverage may be subject to annual deductibles and coinsurance provisions as may be deemed appropriate and as are consistent with those established for other benefits under the plan or coverage.

Although the specific statue seems to indicate that such coverage is available only to individuals who elect reconstruction, the regulations, which are currently being written to more fully describe the intent of the statute, will clarify that reconstruction is not a requirement. Whether or not reconstruction is considered, this Act requires coverage for the treatment of lymphedema, and that is reportedly the way it is already being interpreted by major payers throughout the country. Legislation currently being developed and introduced to Congress to address the treatment of prostate cancer and other forms of cancer is likely to include similar language to mandate coverage of complications, including lymphedema. What is not included in these statutes or the regulations is the type of treatment that must be provided as a covered serice. Such decisions are left to the payers to determine.

Since commercial carriers are regulated at the state level, there is also wide variation in coverage for the treatment of lymphedema, other than for patients for whom there is a federal requirement, among states. Some states require health plans offered in their jurisdictions to cover such treatment, and some do not. It is incumbent upon professionals to join with patients, professional associations, and other interested parties to advocate for mandated coverage in states where coverage is denied.