In 1983, I flew home from college to be with my mother as she woke up from a mastectomy. She opted out of breast reconstruction, choosing to “go flat” instead.
When I was diagnosed with breast cancer in 2017 and had bilateral mastectomies, I had more reconstruction options than my mother did.
I chose the option that was the best fit for me: DIEP flap, which uses a person’s own tissue to recreate the breast. Researchers have called it “the gold standard for reconstructive options.” According to a 2017 study, it supports better well-being, has fewer complications, and helps people recover more quickly, with less hospitalization time, compared with other procedures that use muscle tissue. In 2020, more than 23,000 patients — almost one in five people who had reconstruction that year — chose DIEP flap.
But fewer people may have that choice going forward. Recently, at the request of insurance companies, the Centers for Medicare and Medicaid Services has announced that it is ending the medical billing code for DIEP flap. If that change takes effect, most patients won’t be able to get the reconstructive care they need. It’s imperative that CMS retain the code to ensure access to DIEP flap reconstruction.
Breast implants are the most common alternative to natural reconstruction. They are the right choice for some, but not everyone. Implants can cause more health problems, and they are not an option for people who need radiation. Implants also risk complications, including rupture, and require replacement about every decade.
I joke that when I was choosing my breast surgeon, I was Goldilocks — I saw four doctors before finding “the one.” None of the first three asked what I wanted post-mastectomy, nor took time to discuss the pros and cons of different reconstruction procedures. I had to do my own research to discover DIEP flap was an option.
Since 1998, all insurance plans have been required to cover breast reconstruction under the Women’s Health and Cancer Rights Act. The WHCRA has improved access to breast reconstruction: Within two years of the WHCRA becoming law, women’s ability to access breast reconstruction increased by 36 percent. Later studies suggest that, in at least 22 states, reconstruction access continued to rise by 62 percent between 2009 and 2014.
Despite this progress, research shows that there are significant reimbursement disparities between implants and natural reconstruction. Across all forms of insurance, reimbursement rates are higher for breast implants, which are simpler and faster to provide, making them more lucrative for surgeons and saving insurance companies money in the short term.
To better align these financial incentives, in 2006, CMS established a reimbursement code for surgeons to submit to insurers for performing a DIEP flap. It fairly compensated them for providing this more complex procedure. Thanks to this policy and my health insurance, I could afford to choose DIEP flap reconstruction.
Today, in the Washington, D.C., region, where I live, this kind of reconstruction may cost between $11,909 to $27,985 per breast if you don’t have insurance, according to procedure-only cost estimates by FAIR Health. For people with insurance, the out-of-pocket costs drop to about $4,820 to $9,098 per breast. Implants are not as expensive, though again, patients may have to pay for replacement procedures in the future. For those without coverage in the D.C. area, implants can cost $4,195 to $6,276 per breast, falling to $1,804 to $2,022 with insurance.
Now, CMS plans to eliminate the unique code next year, approving a request by the Blue Cross Blue Shield Association. (Blue Cross Blue Shield happens to be my insurer.) The association reasoned that the unique code was temporary, and that other codes should cover this procedure. The problem is that other codes include surgeries that are easier — and cheaper — to provide, so they would not render reimbursements reflecting the complexity of providing DIEP flap. Already, some insurers have announced they will stop reimbursing doctors for it. While the billing code may not require insurers to pay for DIEP flap, it is necessary to give surgeons a greater chance of being paid for their skill and time providing the procedure. It is an important incentive for providers to continue offering DIEP flap to patients.
Without payment for the complexity of the DIEP flap procedure, fewer surgeons will offer it as an option for insured patients. This change has no medical basis and does not reflect the best patient outcomes. Eliminating the code will make this option inaccessible for most people who need breast reconstruction. DIEP flap will become available only to those who can pay for it on their own — and most won’t be able to.
Almost half of adults in the U.S. struggle with health care costs. Breast cancer treatment specifically poses “catastrophic or significant” economic burdens on nearly half of patients. Decades of gender, racial, and economic inequality worsen this insecurity. This DIEP flap access issue will hit Black women the hardest, as we are more likely than other groups to choose it when we seek reconstruction.
Thanks to grassroots advocacy by patients and health care professionals, CMS hosted a public meeting on June 1 to seek input. Feedback from providers and patients was overwhelmingly in support of maintaining the code to ensure access to DIEP flap reconstruction. During the session, agency leaders acknowledged our concerns and appeared receptive to our request. CMS will announce its final decision this August.
I hope agency officials take to heart one main message I heard at the June 1 meeting: Breast reconstruction is a deeply personal issue. Every patient who wants reconstruction should be able to decide, with their doctor, what option to pursue. CMS must preserve the DIEP flap reimbursement code as a vital first step to ensuring we have this control.
In the future, leaders should look to resolve other challenges facing breast cancer patients. For example, patients who have a mastectomy deserve to know about all their options. Do we want to go flat, like my mother, or have reconstruction? If we want reconstruction, what are our choices? I should not have had to interview four surgeons, or rely on my own research, before learning all my options.
I became a patient advocate when my mother was diagnosed. I have mourned loved ones lost and I have cared for fellow survivors. We have our hands full dealing with cancer. We shouldn’t have to fight to keep a benefit we’ve had for nearly two decades, one which is a vital part of quality care.
Lisa D. T. Rice, M.S., is a breast cancer survivor and vice chair of the National Coalition for Cancer Survivorship.