The Women’s Health and Cancer Rights Act (WHCRA) of 1998 represented a significant landmark in the advancement of women’s health, ensuring access to medically necessary postmastectomy care.
This effort, led in part by determined and dedicated advocates of the ACS, affirmed the right of women to make informed and empowered choices about breast reconstruction. The WHCRA was developed after a national effort across the spectrum of care highlighted the importance of comprehensive insurance coverage for cancer-related conditions disproportionately affecting women.
Before 1998, there were no federal protections ensuring healthcare coverage for breast reconstruction after a mastectomy. While a handful of states did have laws at the time with some level of limited coverage, the vast majority did not offer any form of protection for this cohort. Insurers commonly classified breast reconstruction as “cosmetic,” denying coverage for procedures that were medically necessary to restore form, symmetry, and function following mastectomy.
This issue gained national attention in 1997, when 31-year-old Janet Franquet was diagnosed with an aggressive form of breast cancer. Following mastectomy and chemotherapy treatments, Franquet sought breast reconstruction from her surgeon, Todd Wider, MD. However, to her dismay, Dr. Wider informed Franquet that her insurance carrier refused to cover the cost of the procedure.
The insurance carrier explained that the operation was considered “cosmetic” and therefore did not qualify for coverage. Dr. Wider was outraged by the denial and ultimately decided to perform the operation free of charge. Determined to prevent other women from facing similar obstacles, he began a campaign to establish federal requirements for coverage of breast reconstruction surgery.1
This series of events led to surgeon and physician advocacy involvement across the US.
Over the next year, the ACS and other physician-focused associations worked in coordination with Senator Alfonse D’Amato (R-NY) and a bipartisan collection of senators, including Senator Diane Feinstein (D-CA). This group of advocates worked together to pass groundbreaking legislation to support insurance coverage of breast reconstruction surgery following a mastectomy.
Speaking on the Senate floor, Sen. D’Amato emphasized the importance of passing this critical legislation:
“This past February, not that long ago, her doctor called me. Dr. Wider of Long Island said to me, ‘Janet Franquet, a 31-year-old woman, needs a radical mastectomy. When I contacted her medical plan, the medical director said that they would not authorize payment for reconstructive surgery.’ Here is a young woman, 31 years of age. I called the director of that plan, Dr. Hodos, and I said to him, ‘How could you be saying that this is not necessary?’ He said, ‘Replacement of a breast is not medically necessary and not covered under the plan.’ Then he said, ‘This is not a bodily function and therefore cannot and should not be replaced.’ That is not an isolated case, Mr. President. The women of America—our mothers, daughters, sisters, neighbors, friends—should know that they are covered.”2
The WHCRA was ultimately signed into law in October 1998 by President Bill Clinton. This transformative piece of legislation mandated that any group and individual health plan covering mastectomies must also cover:
- All stages of reconstruction of the breast removed during mastectomy
- Surgery and reconstruction of the opposite breast to achieve symmetry
- Prosthetic devices
- Treatment of physical complications at all stages of mastectomy, including lymphedema3
The law ensures that all these services are provided with consultation from the patient’s attending physician. In addition to coverage, the WHCRA also requires that insurers notify beneficiaries of these rights upon enrollment as well as annually. Enforcement of these rights is carried out by the US Department of Labor and the Department of Health and Human Services, depending on the type of plan.
The WHCRA was a significant milestone in the advancement of improving women’s health in the cancer space. By ensuring coverage for breast reconstruction postmastectomy, it set a precedent that these procedures could no longer be classified as purely cosmetic, and in fact, serve a medically necessary function. WHCRA stands as a testament to the power of advocacy from a coalition of numerous specialty associations, bipartisan collaboration, and the commitment to advancing women’s health in the US.
Why WHCRA Needs an Update
Although the WHCRA was a significant milestone at the time, it was written when breast reconstruction options were more limited. Advancements in surgical care over the past 25 years have outpaced this law and no longer meet the new improved realities. These structural gaps result in limiting a woman’s ability to receive timely, high-quality, and patient-centered surgical care. These gaps can result in worsened outcomes for cancer survivors who deserve the best possible treatment.
Today, more than 300,000 women in the US are diagnosed with breast cancer each year, affecting 1 in 8 women.4
Despite these staggering numbers, the gaps in coverage still prevent patients from receiving comprehensive care to empower them and reclaim their bodies in a way that aligns with psychological, social, and improved well-being after breast cancer surgery.
One limitation is the lack of coverage for the full spectrum of modern reconstructive options and techniques that are available. These options have evolved drastically since 1998, and many have become standard-of-care options.
WHCRA does not provide a mechanism to ensure that payers’ decisions reflect current surgical science, such as deep inferior epigastric perforator flaps, transverse rectus abdominis myocutaneous flaps, superficial inferior epigastric artery flaps, and other advanced microsurgical autologous approaches to reconstruction. The language used in WHCRA predates these innovations, and unfortunately because of this, insurers are more likely to deny coverage.5
The lack of modernized federal standards that properly reflect the current surgical techniques will continue to result in suboptimal patient care. Similar to the environment of 1998, insurers at times classify these procedures as nonstandard, experimental, or not medically necessary. These misclassifications may be the case even if these techniques represent the best possible option and provide the highest quality of care.
An additional challenge is the lack of any safeguards to ensure enforcement of WHCRA. This reality is somewhat due to the enforcement of WHCRA remaining largely reactive and complaint driven. These delays in coverage generate avoidable anxiety for patients that in many cases are still undergoing treatment for cancer. This disruption in care undermines the patients’ dignity and access to care that WHCRA was designed to protect.
Because the statute does not impose penalties on insurers that violate the law, there is little deterrent against inappropriate denials or arbitrary reinterpretations of “medical necessity.” As mentioned previously, surgeons already encounter denials that conflict with the well-recognized standards of care.
One of the most persistent challenges related to WHCRA implementation comes from administrative barriers that can place a significant burden on providing care. Even when a procedure falls within the intent of WHCRA, surgeons still may be drawn into hard-fought administrative battles to secure the necessary coverage.
Routinely, surgeons are required to draft extensive letters confirming medical necessity, file multiple levels of appeal, and participate in peer-to-peer reviews, in an effort to secure proper coverage. These tasks become incredibly arduous for surgeons who must defend their clinical judgments against reviewers who have no specialized expertise.
Compounding this burden is the reality that an insurer’s approval for coverage is not always a guarantee.
