Why These Two Treatments are Covered for Breast Cancer, While Lipedema Patients Are Left Behind
Lipedema women struggle for the same treatment coverage that's easily covered for a breast cancer diagnosis.
Women with lipedema are treated differently by insurance and the medical community than those diagnosed with breast cancer? Why?
The stark reality is that lipedema patients face significant challenges, not only due to stigma and limited medical awareness but also because of a lack of legislative support.
The 1998 Women’s Health and Cancer Rights Act (WHCRA) is a federal law that ensures breast cancer patients receive insurance coverage for breast reconstruction surgery following treatment.
While the WHCRA guarantees insurance coverage for breast cancer reconstruction, lipedema patients have no comparable federal protections. As a result, we’re often left to navigate insurance battles on our own, fighting for medically necessary care.
This article does not intend to criticize breast cancer reconstruction treatment but to highlight the disparity between two diagnoses: one, supported by federal protections, and the other, lacking any legislative or protective safeguards.
WHCRA protects patients who choose breast reconstruction after a mastectomy.
The law requires that health insurance plans cover certain services related to breast reconstruction, including:
Treatment of physical complications of lymphedema to reduce swelling, prevent infection, and improve the ability to move and function.
All stages of plastic surgery (including skin excision) for breast reconstruction, aiming to improve a patient's body image and potentially alleviate emotional distress.
Women with breast cancer have insurance coverage for these two particular medical treatments, which aren’t readily available for lipedema women.
1. Compression for lymphedema
Insurance coverage for compression garments for secondary lymphedema varies significantly between breast cancer patients and lipedema patients.
Medicare now provides extensive coverage under the Lymphedema Treatment Act (LTA), effective January 1, 2024, for breast cancer-related lymphedema. Proposed by several oncology and other advocate groups, this law ensures reimbursement for standard and custom-fit compression garments and bandaging supplies (this law applies exclusively to Medicare, and commercial or private insurance providers are not legally required to follow suit).
Patients need a clinical diagnosis and prescription to qualify, and Medicare covers multiple garments per year, recognizing that compression is essential to prevent complications such as infections or hospitalizations.
In contrast, coverage for lipedema-related compression garments remains inconsistent. Although there has been an increase in compression coverage, insurers often categorize lipedema differently, leading to fewer policies that explicitly offer compression coverage. While some private insurers cover compression as part of conservative lipedema treatment, others deny it or classify lipedema under general obesity or cosmetic conditions, making it more challenging to receive benefits.
Lipedema advocacy has been slower in supporting compression coverage. Advocates hope that the success of the Lymphedema Treatment Act will influence broader policy changes for conditions like lipedema over time.
As lipedema patients, the best way to get coverage is to diligently work closely with our providers to emphasize the medical necessity of compression therapy. Engaging in the appeals process is exhausting but can also improve our chances of coverage.
2. Skin excision and reconstruction
Insurance coverage for skin removal and reconstruction is often easier to get for breast cancer patients than for those with lipedema due to legal protections that favor breast cancer reconstruction.
Breast cancer reconstruction, including skin removal, is usually well-covered by insurance. The WHCRA law requires that insurance pays for reconstruction and any needed changes to keep both breasts looking similar after a mastectomy. This coverage often includes various surgeries like flap surgeries and skin grafts.
In contrast, coverage for lipedema-related excision surgeries is much more limited and inconsistent.
Without protective mandates, lipedema patients are more likely to pay out-of-pocket for skin excision with liposuction surgery.
Excess skin after liposuction can create skin integrity issues and continue impacting our mobility and quality of life. This isn’t enough for insurance coverage, and they will deem our skin excision as “cosmetic” or “aesthetic.”
Skin excision can cost thousands of dollars and is financially out of range for most of us.
Even now, insurers do not always recognize treatments like liposuction and skin excision as medically necessary. Even when liposuction is approved, skin excision may not be covered for functional or aesthetic purposes after surgery.
This makes it hard for lipedema patients needing skin removal surgery to help them move or feel better. Unlike breast cancer patients, lipedema patients often struggle to get insurance coverage for these essential surgeries.
For lipedema patients, navigating insurance can feel like an uphill battle. We go through multiple appeals and dig into state-level regulations to get coverage.
In contrast, breast cancer patients seeking reconstruction often face fewer hurdles, thanks to clearer legal protections that support their care. This difference reveals a frustrating systemic bias in insurance coverage, where lipedema patients have to fight much harder to secure the medically necessary treatments they need.
How Do WE Change This?
Like the breast cancer advocacy groups in the 1990s, we, as lipedema patients, must band together and demand more coverage for our needed medical treatment.
Lipedema patients can access several resources and advocacy groups to help push for better insurance coverage for lipedema surgeries and skin excision. Here are some key organizations and initiatives:
Lipedema Foundation: This organization is dedicated to increasing awareness, funding research, and advocating for lipedema patients. They provide resources on how to advocate for better care, including insurance coverage. Their website offers information on how to reach legislators and healthcare providers to promote lipedema awareness and treatment options. More information can be found on their website.
Lymphedema Treatment Act: The best way to advocate for yourself in getting compression is to GO TO THIS PAGE to take action to ensure that your health insurance company follows Medicare’s precedent and includes compression coverage.
National Lymphedema Network (NLN): The NLN provides education and resources for patients and advocates for improved access to treatment for lymphedema, which overlaps with lipedema in some cases. They offer guidance on how to navigate insurance coverage issues. Check out their resources here.
Advocacy Groups on Social Media: Joining support groups and forums on platforms like Facebook or Reddit can connect patients with advocates and other individuals sharing their experiences. These groups often share tips on how to effectively advocate for insurance coverage.
Local Support Groups: Many cities have local support groups for lipedema patients, where members can share information on navigating health care and insurance issues. These groups often have insights into local legislation and ways to advocate for change.
Legislative Advocacy: Lipedema patients can engage in advocacy efforts to educate legislators about the need for better coverage. This can include writing letters, setting up meetings, or participating in awareness campaigns. Organizations like the Lipedema Foundation often provide templates and guidelines for these advocacy efforts.
By utilizing these resources and actively engaging in advocacy, lipedema patients can work towards improving insurance coverage for their necessary surgeries and treatments.
Yes, this is yet another challenge we face—but this fight is essential. As more women are diagnosed with lipedema and realize the obstacles to care, our voices become stronger together. Women throughout history have battled for equal treatment in healthcare, and now it’s our turn. We are advocating not only for ourselves but for every woman with lipedema who deserves fair access to treatment. By speaking up, pushing for coverage, and demanding our needs be recognized, we can create real change. Let’s take this stand—because our health, our dignity, and our futures depend on it.
Take care,
Michelle