June is National Cancer Survivor Month, and there is welcome news that mortality from several types of cancer, including breast cancer, is decreasing.
But cancer survivors face steep challenges unrelated to the disease itself. Among the approximately 4 million breast cancer survivors in the United States, those who have had mastectomies had to decide whether to undergo breast reconstruction and, if so, whether to do so using implants or tissue transplanted from another part of their body.
One such method, known as DIEP (deep inferior epigastric perforator), in which abdominal tissue is transplanted to the chest without using abdominal muscle, may soon be less available. Why? The Centers for Medicare and Medicaid Services (CMS) is planning to eliminate the billing codes for this and other specialized breast reconstruction procedures on Dec. 31, 2024. This should not be the case: women facing breast cancer need all the best reconstruction options readily available.
This is deeply personal for me.
My son was just shy of his second birthday in 2011 when I was diagnosed with a precursor to invasive breast cancer in my left breast. I was just 36 years old and terrified. I went ahead with a mastectomy. Then, I faced the question of whether and how to reconstruct my breast. I wanted reconstruction but was concerned about the potential downsides of implants: discomfort from a “foreign body” in my chest, implant leakage, and the need to have procedures every decade to replace the implants. These were all daunting. Reconstruction using my own tissue seemed like a better approach for me. According to my plastic surgeon, I was a good candidate for DIEP-flap reconstruction.
It was then that I first learned about the Women’s Health and Cancer Rights Act of 1998. This legislation mandates that insurers that cover mastectomies provide coverage for all stages of breast reconstruction. Through my insurance, I had options and could choose the reconstruction that was best for me. In hindsight, choosing the DIEP flap approach was one of the best decisions in my life. My reconstructed breast feels and looks much like a natural breast and has enabled me to lead an active, exuberant and fulfilling life — even bench pressing at the gym with my now 14-year-old son.
The detrimental effects of the proposed coding changes have caught the attention of U.S. senators, representatives, patient advocacy groups and professional organizations, who have written to CMS urging them to retain the specialized billing code for DIEP-flap surgery. The elimination of certain billing codes by CMS means that it wants to revert to a lower-paying billing code for these special flap procedures, generally used for less complex and less expensive reconstruction options. Though it may appear only as a procedure coding change, the consequences would be profound.
Fewer women will likely be offered DIEP flap reconstruction if surgeons are not reimbursed adequately for this more complex procedure. This could make it more difficult for women to obtain DIEP flap reconstruction, including those who have had breast radiation, for whom it is a critically important option. At a time when we are grappling with disparities in access to care, a decision like this would further perpetuate health inequities. More women will be asked to pay for the advanced procedure, many of whom simply cannot afford it. Yet, women report increased quality of life — a major goal of healthcare — with DIEP-flap reconstruction.
In a glimmer of hope, on June 1st 2023, CMS held a hearing soliciting input on their decision to discontinue the codes, raising the possibility that the there is still a chance to reverse this process.
Just weeks ago, I was diagnosed with breast cancer again, this time in my other breast. DIEP-flap reconstruction was no longer an option for me because it was used previously. Nevertheless, I knew that I wanted to use my own tissue. I was able to have reconstructive surgery using my inner thigh tissue through a delicate microsurgical procedure. After many hours in the operating room, I recovered listening to the Doppler machine capture the melodic sound of blood supply flowing through my new breast, a sound reminiscent of a fetal heartbeat. It filled me with optimism for the future and hope of a prompt return to my favorite activities.
Having breast cancer is hard enough. Believe me. Let’s make sure that every woman is able to share the same optimism and outcomes that I had by ensuring access to the breast cancer reconstruction method that is best for her.
Katerina Politi is associate professor of pathology and internal medicine at the Yale School of Medicine.