Email the CDC to Support a Lipedema Diagnosis Code—Plus, Get a Free Month's Subscription!

I've made it easy by providing a pre-written email, so all you need to do is send it. Your support can make a huge impact!

Source: Instagram

Deadline: October 11 (the sooner, the better!)

We need your voice! Please send a support letter to nchsicd10cm@cdc.gov advocating for the approval of ICD-10 codes for lipedema, exactly as written. Whether you're a patient, caregiver, medical provider, or a friend of someone with lipedema, your perspective is crucial.

Explain how the lack of proper codes has created barriers to diagnosis, treatment, and overall care. The Centers for Disease Control will read every submission, and every voice matters—regardless of where you live, even if you’re outside the U.S.!

Let’s make sure lipedema gets the recognition it deserves. Your letter can make a difference!

On September 11th, 2024, Dr. Karen Herbst spoke at the CDC to propose new ICD-10 (diagnosis) codes for lipedema and lipolymphedema. If you want to read the entire documentation about this proposed ICD-10 codes, it is a 160-page document, but you can skip to page 99 to read about Lipedema; hit the purple button below:

Why do we need an ICD-10 code for Lipedema?

ICD-10 codes are essential for ensuring accurate, precise diagnosis reporting, directly impacting the quality of care and access to treatment. These standardized codes go beyond just billing—they allow healthcare providers to communicate more effectively, track disease patterns, and contribute to global medical research.

By using ICD-10 codes, doctors and insurers speak the same language, making it easier to approve necessary treatments, monitor the prevalence of conditions like lipedema, and drive advancements in care. Without them, the healthcare system would struggle to provide the specific, effective solutions patients deserve.

What can you do to help?

This is where we can all make a difference to get a legitimate diagnosis code for our disease.

I’ll even give you a template to cut and paste and fill in the blanks (feel free to personalize as you like):

Email: nchsicd10cm@cdc.gov

Subject: Formal Request for the Addition of an ICD-10 Code for Lipedema

Dear CDC Team,

I am writing to formally request the inclusion of a dedicated ICD-10 code for lipedema, a condition that I personally live with. Lipedema affects millions of women, yet it is still underdiagnosed and often mistaken for obesity or lymphedema. The lack of a specific ICD-10 code has created significant challenges in receiving proper medical care, accessing necessary treatments, and gaining insurance coverage for vital services.

As a lipedema patient, I have experienced firsthand the confusion and frustration that come with the medical community’s limited understanding of this condition. It took years for me to get an accurate diagnosis, during which time I was often told that my symptoms were simply a result of weight gain. This misdiagnosis delayed my access to proper treatment and left me struggling with chronic pain and discomfort.

The absence of a specific ICD-10 code for lipedema not only contributes to misdiagnosis but also makes it difficult for patients like me to receive appropriate treatments, such as specialized compression therapy or surgery. Without a recognized diagnostic code, many insurance companies deny claims, forcing patients to bear the financial burden of managing this condition on their own.

The inclusion of a dedicated ICD-10 code for lipedema would make a significant difference in the following ways:

1. Improved Diagnosis and Treatment: A specific code would enable healthcare providers to better recognize and treat lipedema, preventing years of misdiagnosis and inappropriate treatment that many of us endure.

2. Better Access to Insurance Coverage: With a recognized ICD-10 code, insurance companies would be required to approve claims for essential treatments. This would remove the ambiguity that often leads to denied coverage, ensuring patients receive the care they need and reducing the financial burden many of us currently face.

3. Support for Research and Data Collection: Assigning a unique ICD-10 code to lipedema would allow for better tracking of the condition and promote research efforts to develop more effective treatment options.

4. Raising Awareness: Including a dedicated code would help raise awareness among healthcare professionals and the public, fostering earlier diagnoses and reducing the stigma that often accompanies lipedema.

Living with lipedema is a daily struggle, both physically and emotionally, and I know I am not alone in feeling the effects of this underrecognized condition. Including a specific ICD-10 code would profoundly impact the lives of countless women, improving access to care and helping to validate the challenges we face.

I respectfully urge the CDC to consider this request and take action to support those of us living with lipedema by assigning it a dedicated ICD-10 code.

Thank you for your attention to this important issue.

Sincerely,
[Your Name]
[Your Contact Information]

Once you send your email, please comment below, and I will add you for a complimentary monthly subscription to Lipedema Insured. This will give you access to my workshops for one month!

Please take just two minutes out of your day to send this email to the CDC—your small action could make a life-changing difference for millions of women living with lipedema.

Take care,

Michelle