I didn’t look sick enough — My painful battle with insurance

If your health insurance company informs you that you don't appear "sick enough" to receive coverage, you know that the U.S. healthcare system is deeply flawed.

I never imagined I would have to fight my own health insurer for treatment that my doctor determined was necessary to treat my disease. However, I was denied care for lipedema, a painful and often misunderstood disease that affects millions of women. It is time for policymakers to step in and hold insurance companies accountable for denying patients the medically necessary care their doctors prescribe.

Lipedema is a disease that causes fat to accumulate in the connective tissue, most commonly in the lower body. While exact figures are unavailable, some estimates suggest that it affects up to 11 percent of women globally. While it's not rare, lipedema is frequently unrecognized, underdiagnosed or misdiagnosed. Unlike many conditions, there are no standardized blood or urine tests for lipedema, so the only way to diagnose it is through a physical examination by a physician.

Because of the fat buildup, insurance companies are quick to label lipedema procedures as cosmetic, using that designation as an excuse to deny care. That is far from my reality.

For me, lipedema is chronic pain that limits my mobility, affecting my daily life in ways many people cannot see. Not being able to play with my kids is a daily reminder of what this disease has taken from me. Seemingly simple, everyday tasks like bending over or climbing stairs can quickly become painful, forcing me to stop what I'm doing just to find a moment of relief.

Despite explaining lipedema many times to my insurer, I was repeatedly told my condition was simply excess weight, something diet and exercise could fix. That claim is wrong: lipedema cannot be treated through exercise and weight loss alone. In fact, the only medically recognized treatment is specialized lipedema reduction surgery, which removes diseased tissue and restores mobility. On average, the surgery costs $35,000 without insurance.

Even with two physician referrals deeming the procedure medically necessary, my insurer still denied authorization for surgery and all future treatment requests. The reason? I didn't look "sick enough."

In addition to the harms linked to insurer "prior authorization" requirements, a major barrier to patient care is the lack of Current Procedural Terminology codes for lipedema in the United States. CPT codes provide a universal vocabulary that allows providers, insurers and administrators to understand medical procedures and determine coverage. Without a CPT code, there is no clear standard for treatment – and no clear pathway for approval.

With no standardized procedures for treating lipedema, insurers default to denial. And when corporate insurers can deny, they often do, prioritizing their bottom line. Studies show that insurer delays and denials frequently interfere with doctor-recommended treatment, burdening physicians and patients and sometimes causing serious harm.

Instead of covering the surgery that would actually treat my disease, I was asked whether I would consider alternative cosmetic procedures that would not address the underlying condition at all – convenient for the insurer, not for me, the patient. Again, I made clear that these alternatives would not adequately address my condition.

These are bad practices from insurers, and patients are paying the price.

Fortunately, with a large social media audience, I have an elevated platform to speak out against harmful insurer practices. After sharing my story initially, I've connected with countless other women living with lipedema who are facing the same barriers, the same denials and the same frustration. What I discovered was a pattern of systematic coverage denials across insurers for needed treatment, and the research supports it. Insurer delays and denials strain providers, and when care is delayed, conditions worsen, requiring more complex treatment.

Patients deserve better.

Policymakers must hold big insurance companies accountable for denying medically necessary care. No patient should be denied care based on a non-scientific, arbitrary assessment from an insurance company.

Lipedema may be invisible to the eye, but the pain is real. The effect is real. And the fight for proper care is real. I am speaking out not just for myself but for the millions of women still waiting to be seen, heard and treated.

Aurora McCausland, who lives in Utah, has had lipedema since her teenage years. She wrote this for InsideSources.com.