We are in our sixth year of working with lipedema patients and thought it would be good, especially for newer coverlipedmea.com members, to reflect on where we have come from and are going.

When we started working with lipedema, it was not covered by insurance. We helped a few women get covered through their employers. The lawsuits against UHC, Aetna, Anthem, and Cigna allowed us to get more insurers to cover and issue policies. However, because of the concerns about how many women have lipedema, which is likely 1 in 50 or 1 in 100, insurers are worried about costs. Although we believe the commonly cited statistic that 11% of women have lipedema is inaccurate because that was derived from a study of women with leg swelling who presented to a leg swelling clinic in Germany. However, one to two million US women is still significant and would cost billions of dollars in treatment.

 We are seeing women be more educated about having safe and effective surgery with a plastic surgeon who does not treat lipedema like a business. We see more and more marketing from the handful of physicians who have made millions off this disease and are less focused on safety and full coverage by insurance. However, at this point, we have dozens of plastic surgeons treating lipedema, new plastic surgeons learn about it in training and on their boards, and the American Society of Plastic Surgery has committed to educating about it. With 6,000 plastic surgeons in the United States, we can easily see meeting our goal of having safe, effective, and insurance-friendly plastic surgeons in every state who, with some more efforts on our part, will be paid fairly for what can be a long staged process even though relatively simple compared to other plastic reconstructive procedures.

We also are moving forward with reaching out to more non-surgeon, particularly obesity medicine specialists, to diagnose and manage lipedema patients, and we are now up to over fifty clinicians. We have almost a hundred physical and occupational therapists who help meet conservative measure requirements and perform physical therapy evaluations that they can usually bill to insurance that help document the functional issues necessary to have surgery covered.

Lastly, we are engaging hospital systems to create lipedema centers of excellence. Although we want to ensure surgeons who do the lion’s share of the treatment benefit most, the market power hospital systems have is important with insurers. They also can help create regional centers where women with lipedema can easily access therapy and other support in their journey.

Six years from now, our goal is that primary care physicians will widely recognize lipedema. Women will be immediately referred to a local in-network physician for diagnosis and conservative measures and then for local surgery with a plastic surgeon supported by the hospital, therapists, and other physicians to ensure the patient has the best outcome possible.