Breastoration: Removing barriers to reconstruction

By Paul Snyder

Maria Stambaugh is a single mother who was working as a hostess at The Chloe New Orleans, the boutique hotel and restaurant in the heart of the city. After being diagnosed with breast cancer and going through the process of reconstruction, her financial situation became somewhat strained. One day a woman came in wearing a lymphedema sleeve. Maria walked up to the customer and asked if she was a breast cancer survivor.

The customer said she was.

Excited to have someone to share her experience with, Stambaugh began to discuss her own journey with the customer, and how she had taken the parttime job at The Chloe to help cover the expenses incurred by the diagnosis and reconstruction. The customer began to tell her about Breastoration, a local nonprofit that not only raises awareness about breast reconstruction options, but also provides educational and financial resources to women diagnosed with breast cancer. Unbeknownst to Stambaugh, the customer with whom she was conversing was Amelia Leonardi, president of the Cancer Association of Louisiana (CALA), which distributes Breastoration funding.

Suddenly, Maria burst into tears. Earlier that day, she had received a call informing her that she would be awarded Breastoration funds to help cover some of her necessary expenses.

“I can’t describe the feeling of how much I needed to hear that help was on its way,” Maria recalls. “I’ve been angry, sad and felt that I had no support. Breastoration lifted me up when I needed it most. I felt like someone cared.”

There are several women who share the sentiment.

Take Ashley Gautreau, who opted for bilateral mastectomy with reconstruction after being diagnosed with cancer at age 36. With two young children, the diagnosis and reconstruction forced her to miss an entire month of work without pay – and when she was able to begin working again, she was told she could only do so part-time. Despite the lost wages, Ashley’s family was able to help take care of her children, but the expenses incurred through continued medical treatment began to raise her debt load. She, too, ended up a beneficiary of Breastoration. She would go on to host a Jazzercise-themed fundraiser that raised $2,000 to help other women who faced financial hardship as a result of a breast cancer diagnosis.

Susan Granger had a full-time job and good health insurance, but when she was diagnosed with stage 2 breast cancer in 2015, she noted that her out-of-pocket costs still ended up around $20,000. Falling back on her training as a journalist, Susan began researching the diagnosis, what to do and who could help. However, she says the answers she found at the time were lacking.

“One doctor I went to literally handed me a pile of business cards and said, ‘Go call some plastic surgeons,’ ” Susan recalls. “I thought, ‘Are you kidding?’ Do I have time to go make multiple appointments and see if I like this doctor or do research about all these names and their patient outcomes? I mean, you’re already running this overwhelming gamut, and now there’s this whole new pile of research to do – and by the way, you better do it quickly because you might have a lifethreatening illness.”

Fortunately, the answer was right down the street. Susan’s neighbor was Amelia, and like Maria, Susan had noticed Amelia’s lymphedema sleeve. One day as Susan was out for a walk, Amelia drove by and asked how she was doing. Susan shared the news of her diagnosis.

“We ended up with the same oncological surgeon, and she steered me on how to figure out the reconstruction element of it,” Granger recalls. “Then she said, ‘By the way,’ and told me about Breastoration.”

Still moved to this day by Breastoration’s generosity and support, Susan vowed to pay it forward and help other women facing the same uncertainty she did in the days after her diagnosis. Today she sits on the CALA board.

For Amelia, it’s not just a matter of happening to be in the right place at the right time – it’s a matter of paying it forward like others did for her and the community spirit fostered by women who have either benefitted or taken part in Breastoration.

“I was very blessed with a lot of support when I had breast cancer and my reconstruction surgeries,” Amelia says. “It’s so rewarding to be part of an organization that helps women in the community.”

Breastoration was founded in 2011 by a trio of breast cancer survivors, Kim Sport, Sandy Keller and Eve Wallinga. As it celebrates its 10-year anniversary, Breastoration has made its vitality clear not only by raising awareness about breast reconstruction options, but also providing educational and financial resources to women diagnosed with breast cancer. To date, the organization has provided more than $700,000 to more than 200 women throughout Louisiana (and beyond), covering 537 reconstructive procedures from 49 referring surgeons.

Breastoration was initially administered by the Cancer Association of Greater New Orleans (CAGNO), which was formed in 1959, to reduce barriers to cancer patients undergoing treatment. Breastoration became a registered agent in 2017. CAGNO grew in recent years and partnered with local hospitals to become CALA and help more patients across the state.

Although the Breastoration fund prioritizes local patients, the organization’s leaders note that out-ofstate patients can also receive help if funds are available and their reconstruction procedures are performed in Louisiana. Women can apply for funding as each reconstruction is scheduled, and based on their needs, receive up to $5,000 per year to help during their reconstruction journey.

Breastoration is committed to ensuring all women are informed with any updated information available to make a collaborative decision concerning their reconstruction options.

“No woman who has been diagnosed with breast cancer and has to have a mastectomy should ever have to live with a deformity because of a lack of knowledge or lack of money,” Kim says.

For Kim, the time and effort put into Breastoration is personal. A three-time cancer survivor, first diagnosed with stage 2 breast cancer in June 2001, Kim opted for a lumpectomy and chemotherapy, only to be diagnosed with cancer for the second time in the same breast seven years later. As she had already had radiation to that breast, she knew this time she would have to undergo a mastectomy.

“I had already been active in the not-for-profit world because of my first diagnosis, which put me in an entirely different position to decide to have a bilateral mastectomy and simultaneous implant reconstruction,” she notes. “Still, I was very surprised to learn after I had my bilateral mastectomy and reconstruction that seven out of 10 women did not know that reconstruction was an option for them – and an insured option, no less.”

Encouraged by her plastic surgeons, Frank DellaCroce, MD, and Scott Sullivan, MD, who knew of her work in the community and offered vital seed funding, Kim set to work forming a group to help provide patient education on the Women’s Health and Cancer Right Act (WHCRA) of 1998, which was instrumental in expanding healthcare benefits to women diagnosed with breast cancer who sought immediate or delayed reconstructive surgery after mastectomy. The WHCRA specifically mandated that medical insurance providers include coverage for women who sought reconstruction after a unilateral or bilateral mastectomy, as well as balancing surgery (for symmetrical purposes) for the unaffected breast.

“I am a lawyer and I started doing research,” Kim says. “I wanted to see if we had a state law that followed federal law and came to find out that we were probably one of the first states in the nation to adopt the federal laws regarding insurance for breast reconstruction. Louisiana went even further in that it required the state board of medical examiners to prepare an oral and written summary of breast cancer treatment options – including breast reconstruction – that had to be given to a patient. Unfortunately, the state did what it was supposed to do for one year, then it just sort of got put on the shelf.”

She not only helped get enforcement of that law off the shelf – and updated the information to be given to every woman in the state diagnosed with breast cancer – but over the past decade, led multiple legislative efforts that separated Breastoration from other breast reconstruction awareness groups. In addition to working for the Louisiana Supreme Court, Kim also was the public policy chair for the United Way of Southeast Louisiana and worked with the state Legislature on various issues. She used the lessons taken from those roles to help push Breastoration to the front line in the state capitol.

“I just said, ‘Oh, we need legislation?,” she recalls. “ ‘OK, let’s sit down, let’s find some sponsors, and let’s move it.’ We were able to get a number of bills passed very quickly.”

These efforts included removing outdated laws that required that a mastectomy and reconstruction be performed under the same insurance policy; the inclusion of tattooing and liposuction in the definition of breast reconstruction; insurance coverage for complications from surgical procedures; clarification that insurers could not penalize physician reimbursements or patient benefits for type of reconstructive surgery selected by a women in consultation with her physician; and insurance coverage for preventative imaging screens annually for women who had mastectomies.

During the pandemic last year, Breastoration was informed by breast surgeon Amy Rivere, MD, that insurance companies were declining coverage for a prophylactic mastectomy on a noncancerous breast, but providing coverage for reconstruction of that same breast. Within weeks, Kim drafted the new legislation to include prophylactic mastectomies in the definition of breast reconstruction, found a Senate sponsor and the practice was prohibited in a new law that passed unanimously.

“We have legislators who quickly grasped the problems facing breast cancer patients, leading to the passage of the strongest breast reconstruction laws in the nation,” Kim says.

Breastoration hosts an annual fundraiser on or near Breast Reconstruction Awareness Day, the most prominent of which is Galatoire’s Goes Pink in New Orleans, which includes plastic surgeons, oncologists, hospitals, breast surgeons and local community leaders. Several Louisiana plastic surgeons also became supporters of Breastoration, including ASPS member and Louisiana Society of Plastic Surgeons President Jules Walters, MD, who is a CALA board member and helped the organization on some of its legislative efforts. He says he’s continually inspired by the sense of community Breastoration fosters in his patients.

“I remember one particular patient learning about the organization,” he recalls. “She went through the reconstruction journey and knew patients who were helped by Breastoration. Around Christmas one year, she called me out of the blue and said, ‘I want to do my part and help another breast cancer survivor. Is there anyone that you know that might need help buying Christmas presents?’ I mean, this is what life’s all about – bringing people together and finding that sense of community and wanting to make a difference in each other’s lives.”

It’s also a big reason why in addition to educational and advocacy work, the philanthropic help for patients – even if it’s assigned a particular dollar value – is often invaluable. Patients must have a diagnosis of breast cancer or be in need of reconstruction due to a prophylactic mastectomy due to genetic findings. The second criteria is that the surgery be performed in the state of Louisiana by a state-certified plastic surgeon. To ensure that no preference is given to individual physicians or hospitals within the Cancer Association’s service area, once the agency staff have verified that the surgeon and hospital are within the service area, the name of the treating physician and hospital will be redacted from the applications prior to distribution to committee members. Funds are to be used for ancillary needs such as rent, utilities, food, child care and lost wages.

“As medical bills start to accumulate, patients are often left with the decision of, ‘Do I put gas in my car or do I pay my medical bill?’ ” Dr. Walters says. “When you’re already dealing with the fear and anxiety of a cancer diagnosis, it’s a big help to not have to compound that with being able to meet some basic expenses.”

The continued growth of the community fostered through Breastoration is something that still amazes Tammy Swindle, the executive director of CALA, who has administered the Breastoration fund since its inception.

“This fund has a direct effect on the lives of women undergoing reconstruction due to their cancer diagnosis,” she says. “I love that we get to be a part of women's lives and watch them grow, blossom and change throughout their reconstruction journey. My hope for Breastoration in the future is that we continue to do what we do best – and that is remove barriers to reconstruction, along with educating more women about their options.”

For more information about Breastoration and to access an application or provide support to the non-profit, visit breastoration.org.