Beyond survival: Championing women's rights to tailored post-mastectomy solutions
UPDATE: In a major step forward in the effort to preserve access to microsurgical breast reconstruction, the Centers for Medicare and Medicaid Services announced on August 21 that it has decided to maintain HCPCS Level II codes S2066, S2067 and S2068 (covering DIEP, GAP and SIEA flaps).
In a recent development for women seeking post-mastectomy solutions, a seemingly inconspicuous alteration in medical billing threatens to create significant obstacles in accessing DIEP (deep inferior epigastric perforator artery) flap breast reconstruction surgery. This impending shift poses a grave challenge, endangering the availability of this transformative surgery and casting a shadow over women's access to tailored post-mastectomy solutions.
In an era where the fight for comprehensive healthcare rages on, it is crucial to shed light on these ramifications and champion the cause of women who deserve nothing less than unwavering support on their journey beyond survival.
We spoke with plastic surgeons ASPS Board Vice President of Health Policy & Advocacy Lynn Damitz, MD, Christopher Pannucci, MD, MS, Minas Chrysopoulo, MD, and breast cancer survivor and patient advocate Terri Coutee, founder of the DIEP-Cjourney Foundation, to delve into the importance of ensuring that every woman has the right to choose from a range of post-mastectomy options that best suit her individual needs and desires, and examining barriers women face when trying to access their desired post-mastectomy solution.
The importance of choice in post-mastectomy reconstruction
After undergoing a mastectomy, women face important decisions regarding postsurgical options, which can significantly impact their emotional and psychological wellbeing as they strive to regain a sense of normalcy and self-confidence. Coutee shared her experience, highlighting the emotional challenges shared by numerous women during such an ordeal.
"My biggest challenge was facing the loss of breasts," said Coutee. "Emotionally, it was traumatizing to look into my future and wonder what it would be like to live my life without breasts," said Coutee, who had to navigate her life without breasts due to a delay in accessing a DIEP flap procedure. "In fact, because I had delayed the DIEP flap, I was able to experience the loss of breasts first-hand. I shied away from social events and felt uncomfortable in public settings. You get that 'all eyes are on me' feeling even though it may not be the case."
Among the various options available for breast reconstruction, the DIEP flap procedure has gained popularity due to its advantages. Unlike traditional breast reconstruction methods that involve implants, DIEP flap surgery allows women to use their own transplanted tissue, resulting in a more natural and long-lasting outcome. Additionally, the procedure avoids muscle movement or cutting, leading to a faster recovery time and a lower risk of complications.
"The fear of lengthy surgery is real [amongst patients] and cannot be dismissed, even when I counsel women on the safety and efficacy of what physicians do during autologous reconstruction surgery," said Coutee, who often counsels women on the safety and efficacy of autologous breast reconstruction. "When they are told about the risks and benefits of any type of breast reconstruction, often it is the risks that stick mostly in their mind."
For many women, adding to this risk concern is the thought of scarring or the use of implants, which some patients prefer not to use.
"Some ladies cannot bear the thought of a scar across their belly, even when told it will heal over time or that it will be well-hidden by clothing," said Coutee. "Others only want to use their own tissue and don't want anything foreign in their body. That was me."
Customized solutions are at the heart of plastic surgery, which is a personalized specialty focused on what is best for the patients. Pannucci believes patients should be educated about all available options and empowered to make decisions based on their medical history, body type and personal preferences.
"Any breast reconstructive options should be customized to the patient, and they should have access to the full spectrum of reconstructive options," said Pannucci. "You as a surgeon have to offer the full spectrum for women to have all options available to them, like any experience, is definitely a positive."
Damitz highlighted the need for women to have access to a full range of breast reconstruction options.
"Women need to have choices," said Damitz. "I think they need to be afforded the opportunity to be offered the full complement of breast reconstruction options," said Damitz.
Ultimately, women should have the freedom to choose any reconstructive option that aligns with their unique, individual situation.
"Women need affordable access through insurance to any reconstructive option that they feel best suits their needs," said Chrysopoulo.
Barriers preventing women from options in post-mastectomy reconstruction
The Centers for Medicare & Medicaid Services (CMS) recently decided to combine all flap breast reconstruction procedures under one code, effectively eliminating the unique codes for individual flap procedures by December 31, 2024.
The coding changes, although slated for implementation in 2024, are already affecting patients' access to DIEP flap surgery. Some health insurers have ceased accepting the unique (higher paying) billing code, leading to limited coverage and increased out-of-pocket costs for patients. Surgeons are left with difficult decisions, with some only offering the surgery to cash-paying patients, while others have discontinued offering the procedure entirely.
Consequently, plastic surgeons performing DIEP flap surgery will only be able to bill insurance at the rate for TRAM (transverse rectus abdominis musculocutaneous) flap surgery – an older, less advanced procedure that is more prone to complications. Moreover, TRAM flap surgery costs significantly less than DIEP flap surgery, creating a financial disparity for healthcare providers.
"The S-Code sunset issue allows DIEP flaps to be bundled in at the standard repayment rate for TRAM. This allows commercial insurance providers to decrease repayment for the operation," said Pannucci. "This represents a challenge, largely because of the resources required to perform DIEP reconstruction. From a resource perspective, bilateral DIEP flap reconstruction takes two qualified and experienced surgeons most of the day to perform, which is a substantial resource allocation. Standard Medicare rates cannot cover the salary and expenses of two surgeons, and at standard Medicare rates, the operation generates a financial loss."
Access and how the law is supposed to protect breast cancer patients
Damitz pointed out that although the Women's Health and Cancer Rights Act of 1998 requires coverage for breast reconstruction, insurers often have narrow networks that limit access to certain types of reconstruction.
"That is part of the problem, but the whole goal of [the Women's Health and Cancer Rights Act of 1998] was to ensure that women have access to all types of reconstruction," said Damitz. "That's not the way it's turned out."
On top of the looming change, there are already pre-existing barriers to DIEP flap procedures. Coutee addressed the difficulties in finding the right plastic surgeon and understanding the changes that the surgery would bring to her body and changes that impact many women post-mastectomy.
"Keeping expectations in check is a difficult thing to do when your body is going to undergo a big change due to a disease," said Coutee.
Additionally, logistical challenges such as distance and financial resources can create barriers to accessing the preferred post-mastectomy solutions.
"Distance can be a barrier, and in some cases, you are really motivated to do it, and they will drive the three or four hours," said Damitz. "But for some people, whether it be limited resources, they just don't have the money or the ability to drive that or you can't take time off from work or, just don't have resources in general or support system that allows for that, they just go without reconstruction because it's not easily accessible to them."
Actions taken to give women access to DIEP flaps: Initiatives and organizations
In recognition of the importance of preserving women's rights to choose post-mastectomy reconstruction options, several organizations and initiatives are working tirelessly to break down the barriers and ensure equal access to comprehensive post-mastectomy solutions for all women.
Advocacy groups like the ASPS Advocacy Board emphasize the importance of patient empowerment and informed decision-making. Healthcare professionals, breast cancer survivors and lawmakers are also lending their voices to the cause, urging CMS to reverse its decision and reinstate the unique billing code for DIEP flap surgery.
To overcome these barriers and ensure equal access to comprehensive post-mastectomy solutions, Damitz suggested getting involved with legislation and seeking second opinions when needed.
"I think getting involved with legislation, particularly at the state level, is critical for ensuring patients are able to make the right choice for them," said Damitz. "That's kind of the future of medicine will be shared decision-making so that we're all part of the decision."
Coutee stressed the need for education, protection and accurate information for women facing these challenges, which she promotes through the DIEP-Cjourney Foundation.
"Patients are keenly aware of what is going on with equal access to care and are willing to bring awareness to this topic. I personally feel as an advocate myself, we need to educate and protect this community," said Coutee. "Those people who are newly diagnosed and are dealing with a lot already and in a very vulnerable state. Accuracy in information is important whether you are receiving information on issues and challenges in access to options or delivering the information and message if that makes sense."
Reconstruction is more than surviving breast cancer
Beyond surviving breast cancer, women deserve the right to reclaim their bodies and regain a sense of autonomy through tailored post-mastectomy solutions. The recent change in medical billing that threatens access to the DIEP flap breast reconstruction procedure highlights the importance of preserving choice in post-mastectomy reconstruction, and the decision to combine all flap procedures under one code and phase out unique codes for individual flaps poses significant barriers for both patients and plastic surgeons.
Ultimately, by prioritizing patient choice and education, we can empower women to make informed decisions, optimize their outcomes, and restore their sense of self after breast cancer.
"The importance of true choice is that you need that to maximize patient outcomes and patient satisfaction," said Chrysopoulo. "Patients need access to all the options."
The fight for equal access to comprehensive post-mastectomy solutions is ongoing. By raising awareness, engaging in legislative efforts, and supporting initiatives that champion women's rights, we can work towards breaking down barriers and ensuring that every woman has the opportunity to choose the reconstruction option that best suits her individual needs and desires.
"We are all a society of folks who want to live purposeful lives," said Coutee. "It will be important moving forward that we listen to each other and know, any one of us can be affected by this disease. But there is hope living beyond breast cancer, and a large part of that is restoring form and function to a lost body part, in this case, the loss of breasts due to breast cancer. We all want to continue living purposeful lives, no matter what sector of society we are in or what our daily, purposeful contribution to society is."
Ultimately, beyond surviving breast cancer, women deserve the chance to thrive and regain their self-confidence, and tailored post-mastectomy solutions play a vital role in achieving this goal. And until this is reality, it is crucial to shed light on these issues and champion the cause of women who deserve nothing less than unwavering support on their journey beyond survival.
To find a qualified plastic surgeon for any cosmetic or reconstructive procedure, consult a member of the American Society of Plastic Surgeons. All ASPS members are board certified by the American Board of Plastic Surgery, have completed an accredited plastic surgery training program, practice in accredited facilities and follow strict standards of safety and ethics. Find an ASPS member in your area.