Navigating breast cancer and reconstruction is challenging enough without the added stress of insurance hurdles. My journey has been marked by the struggle to secure the right care while facing unexpected limitations imposed by my health insurance plan.
For the past four years, I’ve run a small business, which doesn’t qualify for a small-group health insurance plan. This left me reliant on the Marketplace for my coverage. I initially had a Blue Cross Blue Shield (BCBS) PPO plan, but that changed when BCBS stopped offering PPO options and switched to EPO and HMO plans.
In 2023, I selected a BCBS EPO plan without fully understanding its limitations, as my options were already limited. Just a few months later, at 38 years old, I was diagnosed with high-grade hormone-negative breast cancer. I learned that I would need a mastectomy.
Through research, I decided to pursue breast reconstruction using my own tissue, specifically a DIEP flap, as I wanted to avoid ongoing surgeries related to implants. The thought of undergoing multiple surgeries every 7-10 years or dealing with implant-related issues was something I wanted to avoid. Breast cancer diagnoses in women under 40 are on the rise, and with more women opting for autologous (own tissue) reconstruction, this procedure was gaining traction as a viable option.
However, my insurance plan did not make this an easy path. My surgery required a double mastectomy with immediate DIEP flap reconstruction. The surgeons offering this procedure in the Pacific Northwest could not perform the surgery without taking muscle (and wanted to convert to an MS-Tram), which could have left me with a permanent bulge and muscle weakness—a risk I wasn’t willing to take. Moreover, the surgery times with local surgeons ranged from 14 to 16 hours versus 6 hours outside of the PNW. After multiple remote consults, I learned that I needed a more skilled technique called the Apex Flap, which would preserve my muscle and reduce the risks, and the only surgeons who could offer this specialized procedure in my timeframe were out of network.
The Struggle for Out-of-Network Coverage
To receive the surgery I needed, I realized that I had to go out-of-network as insurance. However, my EPO plan had no out-of-network benefits, and BCBS repeatedly told me a single Case Agreement would be denied, even though local surgeons could not perform the surgery I required. This left me with limited options, including going flat or opting for implants, which I didn’t want.
To secure the necessary care, I took on a new job and switched insurance mid-year (after waiting for the appropriate timelines). This plan was a BCBS Gold PPO with out-of-network benefits, a critical factor for accessing the specialized care I needed. However, when I submitted my new insurance information to the specialized center for restorative breast surgery, I was hit with yet another roadblock: the insurance company had a $3,500-a-day limitation on hospital stays for out-of-network surgeries. When I contacted BCBS, I was informed that I could be balance billed upwards of $100,000.
This was devastating. I had thought that a Gold PPO plan would cover my reconstructive surgery, as it was supposed to be protected under the Women’s Health and Cancer Rights Act of 1998. Yet, the limitations written into the plan made it clear that my coverage wouldn’t work as expected. I filed a complaint with the Oregon Insurance Commissioner but was told that the insurance company could legally include these limitations in the policy. To challenge this, I would need to push for a policy change—a time-consuming process I didn’t have the luxury of waiting for.
The Need for Health Advocacy and Policy Change
Despite these setbacks, thanks to some exceptional advocacy, I got the surgery I needed. However, not every woman facing breast cancer has the same access to the care they need due to the way insurance plans are structured. The issue of limited access to PPO plans, especially for those who are self-employed or work for small businesses, is a growing concern. For women like me, who need access to specialized surgery and reconstruction options, these restrictions severely limit choices for care and can affect the long-term quality of life after mastectomy.
In Oregon, we have access to some PPO plans through insurers like PacificSource, but these are not guaranteed, and they could disappear, as we saw with PPO Plans in Washington State. We must work to protect and expand access to PPO plans, not just in Oregon, but across the country. We need to ensure that small-group employer plans don’t restrict access to specialty out-of-network hospitals or pay less than what Medicare reimburses, which can often leave hospitals unable to offer necessary care to cancer patients.
Most importantly, we need to push for policy change that increases access to breast flap reconstruction and allows women to go out-of-network for specialized care at in-network rates when local options are not available or when local options may not be the optimal option. No woman should have to compromise on her body or her future because of restrictive insurance policies.
