An inside look at NPOAS’ work to #putflatonthemenu
Announcements of major milestones for flat parity – like the Oncoplastic Breast Consortium adding “optimal flat closure” to their mission statement, or the National Cancer Institute adding “aesthetic flat closure” to their Dictionary of Cancer Terms may seem like they drop out of the sky, like manna from heaven. But these announcements are just the tip of the iceberg. Behind the scenes are months to years of tireless, diligent, creative work. Successes, failures, obstacles overcome, lessons learned… and never, ever giving up. That’s how we do it. We will always be grateful for the flat advocates whose work created the foundation for our successes in 2020 and beyond. Here’s a glimpse of some of the “inner workings” at NPOAS as we continue to push for progress – and a look at what the future holds.
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From the Streets to SABCS
We start with our inception in June 2018. At first, NPOAS was a one woman operation. After her Cleveland Clinic surgeon intentionally denied her a flat closure, Kimberly Bowles realized that the problem was a systemic one, and began working to put an end to flat denial. Her topless street protests helped to put the issue in the public spotlight. She quickly characterized the problem (intentional vs negligent flat denial, flat denial as medical battery, the various conflicts of interest involved, etc.) and developed extensive resources to empower women to protect their choice to go flat. These are the resources Kim wished she had when she was facing surgery. They include:
- a flat closure surgeons directory, searchable online and cross-referenced with the popular explant lists
- illustrated brochures to help women ensure their choice is respected – tailored to the needs of those facing initial mastectomy and revision, explant, and for those without the ability to choose their surgeon
- comprehensive information on mastectomy, explant and revision
- informational, community, and one-on-one support for victims of flat denial using social media
As the movement grew, thanks to support from thousands of women across the world, Kim expanded her focus from empowering individual patients – to building a coalition of stakeholders to effect institutional change. She developed extensive resources for providers interested in flat closure, including:
- introductory information pages on flat closure, flat denial, and shared decision-making
- a catalogue of flat closure journal articles and literature
- patient perspectives – stories and images from brave women whose choice was respected as well as those who were victims of denial
- links to external resources – informational videos produced by our Advisors, coding and reimbursement resources, and oncoplastic training
At the close of 2019, less than two years after her first protest, Kim flew to San Antonio, Texas to present NPOAS’ research poster at the world’s premier breast cancer research conference – the research yielded important information to inform patients and providers about the prevalence of flat denial and how to direct future research efforts.
Our Current Work (2020)
Corporate Leadership and 501(c)(3) Status
In January 2020, NPOAS announced its new Board of Directors and status as a 501(c)(3) nonprofit organization. This was the result of months of work setting up a durable yet nimble organizational structure and governance framework. Learn about our new Board on our Leadership Page. Our growing Advisory Council includes plastic reconstructive surgeons, a legislator, and an M.D. researcher – we have several more exemplary candidates in the wings.
The process of recruiting Board members and Advisors involves building trust relationships with stakeholders in the field by producing consistent, high quality work and adhering to the highest standards of integrity and transparency. Identifying candidates who have demonstrated a consistent commitment to the organization’s mission takes years to do correctly, and it is absolutely critical to build the right team to get the job done. The same principles apply to building relationships with other advocacy organizations – and our network is strong and growing.
Flat Friendly Surgeons Directory – a Trusted Resource Since 2018
As of May 2020, we have over 200 surgeons on the Directory recommended for flat closure at initial mastectomy, explant and revision. The listings are searchable and are cross-referenced with the popular explant lists online. The initial database validation was completed with the help of NPOAS volunteers (we now validate new listings monthly), and each Directory surgeon receives an orientation packet with a welcome letter and several Flat is Beautiful brochures (they can order more, free of charge, on the website).
The Directory is a critical tool for patients, both as a stopgap to empower women to protect their choice in the absence of a reliable standard of care for aesthetic flat closure, and as a tool to organize and recognize leading medical professionals who work tirelessly to provide women with surgical results. We are grateful to each and every surgeon on the Directory for their diligence and to each and every woman who recommended them.
In January 2020, we saw historic buy-in in Vermont from legislators, BCBS-VT, and the financial regulation department, on ensuring insurance coverage for flat revision surgery. The proposed legislation was spearheaded by our stellar legislative advisor Rep. Charen Fegard.
We worked closely together for months to help refine and support Rep. Fegard’s vision for the bill, gather input from stakeholders, and produce visual and informational aids to garner support within the legislature. NPOAS published a “Contact Your Legislators” project page to empower members of the public to take legislative action in their state – simply click to download the materials, use the online tool to contact your legislators, and get rolling!
We launched our WHCRA petition and project page to lay the groundwork for the national push that’s on the horizon, and provide a resource for interested parties so that we can build a strong, effective coalition. Many of our initiatives have a timescale of several years, and this is one of them. Getting the ball rolling early is critical.
Those who are facing explant post-mastectomy are particularly in need of solid, concise, and comprehensive information which they can use during their consult to ensure that their decision is respected. This is because these women are really looking at two procedures: explant AND flat closure, neither of which have a robust standard of care in place that aligns with a patient’s expectations. In collaboration with multiple stakeholders including explant activists and surgeons specializing in explant and flat closure, NPOAS produced this valuable resource that covers:
- reasons women decide to explant
- clear & concise information about total capsulectomy, pectoral muscle repair, pathology, documentation and implant return
- how to interview your surgeon
- images of flat (acceptable) vs. unacceptable flat closures for reference
- a checklist of questions to ask your surgeon
- concrete steps to take to ensure your decision is respected
- links for further information
Breast Surgery Conference Exhibitors
Due to the COVID-19 pandemic, our attendance as exhibitors at the 2020 American Society of Breast Surgeons (ASBRS) Annual Meeting was rolled over, along with all donated funds, to 2021. Thanks to our generous donors, we were able to raise over $1,500 – and our plan remains in place. Attending this conference is critically important and allows us to:
- Engage providers in one-on-one discussion about flat closure
- Give interested providers brochures to take back and use in their practice
- Network with other stakeholders – including the NAPBC – to promote our mission
- Learn about the latest research in oncoplastic breast surgery
- Offer a flat closure patient’s perspective during the debate
- Engage with researchers to promote further studies to support an improved, evidence-based standard of care for flat closure
OPBC Includes “Optimal Flat Closure” in Mission Statement
In an important step forward, in April 2020, the Oncoplastic Breast Consortium (OPBC) added “optimal flat closure” to its mission statement, recognizing flat closure as an oncoplastic procedure deserving of an aesthetic surgical approach. NPOAS first reached out to OPBC in February 2020 by joining the organization’s patient advocacy group and entering into discussions about potential mission overlap. We discovered very quickly that OPBC and NPOAS share the same goal – to see oncoplasty become routine in breast cancer care by means of advocacy, research, and promotion of improved, evidence-based standards of care.
We were overwhelmed with gratitude when OPBC amended its mission statement to be inclusive of aesthetic flat closure. And we look forward to continuing working with them to promote oncoplastic breast surgery worldwide!
NCI Adds “Aesthetic Flat Closure” to Dictionary
In another important step forward, just this month, the National Cancer Institute (NCI) added “aesthetic flat closure” to its Dictionary of Cancer Terms, defined as “A type of surgery that is done to rebuild the shape of the chest wall after one or both breasts are removed…” and also describes what the procedure generally entails – removal of excess tissue and contouring to produce a smooth, flat chest wall.
When NPOAS reached out to NCI in January 2020, we had no idea that they’d generate change this quickly. This is a great example of our organization’s approach to getting the job done – one step at a time, reaching out to all possible stakeholders and making the case to each of them in a clear and effective manner. For the NCI Dictionary folks, clear language is their job. They recognized a glaring deficit: there was no term describing this procedure. We made this case plainly to NCI, and were bowled over with their positive and supportive response.
Looking Ahead: 2020 and Beyond
So what does NPOAS have in store for the rest of 2020 and beyond? Plenty. Let’s break it down by category.
Target: WHCRA (Women’s Health & Cancer Rights Act)
- Organize research into nationwide prevalence of insurance denials for flat closure and revision services to quantify how widespread the problem is.
- Use those statistics, the NCI definition of aesthetic flat closure, the support of the OPBC’s mission statement, and data from Dr. Attai’s flat closure research to make the case to federal legislators that the WHCRA should be amended to include aesthetic flat closure (aka chest wall reconstruction).
- Investigate possible collaboration with established legislative advocacy organizations.
Improved Standard of Care
- Outreach to NAPBC about their protocol and the case for amendment to include aesthetic flat closure, ahead of the 2021 ASBRS Meeting.
- Continued consultation and collaboration with breast surgeons and the OPBC to encourage the widespread adoption of an oncoplastic approach to mastectomy. Identify barriers, stakeholders, and steps necessary to achieve this goal.
- Encourage research on insurance coverage denials for flat closure and revision services (and use those statistics – along with the new NCI definition of aesthetic flat closure – to support our case for amending the WHCRA).
- Encourage research on prevalence of common post-surgical adverse conditions (“iron bra,” restricted shoulder range of motion, truncal lymphedema) and determine whether these conditions have any association with aesthetic flat closure vs. mastectomy without additional contouring.
- Work towards the formation of a Young Professionals Advisory Board – in tandem with outreach to medical students and residents.
- Finalize our Council of International Advocates, to amplify the work of flat advocates worldwide and present a unified message to stakeholders, and facilitate connecting advocates with local OPBC leadership.
- Work to characterize the barriers to parity in each country and determine how NPOAS can maximize the translation of our work in the US to other countries (and vice versa).
Organizational Leadership and Inclusivity
- Continue to expand our Advisory Council to include at least one: breast surgeon, oncoplastic breast surgeon, general surgeon, oncology social worker, oncology physical therapist.
- Nominate additional Board members with the explicit goal of ensuring representation of concerns specific to BIPOC and LGBTQ communities.
- Encourage the ASBRS to survey their membership to determine what codes are currently being used for aesthetic flat closure surgical work (Kim is an ASBRS member, representing NPOAS).
- Continue to interface with stakeholders including ASBRS, the American Society of Plastic Surgeons (ASPS), health insurance companies, and others to finalize a mutually agreed upon coding protocol for aesthetic flat closure at initial mastectomy, explant, and revision.
- Initiate lobbying effort to improve reimbursement by increasing the valuation of the agreed-upon insurance code(s).
- Continue to provide support to victims electing to pursue legal action.
- Continue outreach to advocates in related fields, including obstetric violence and institutional betrayal trauma, in order to identify areas of potential translation with the goal of speeding up the timeline to establishing legal precedent and discouraging intentional flat denial.
How Do We Do It?
We Keep Going.
Progress certainly doesn’t always happen as quickly as it did with the OPBC and NCI. Sometimes when we reach out, we get no response, a stock response that goes nowhere, or even a negative response every once in a while. But we keep going. And step-by-step, piece by piece, we are getting closer to our goal: parity for flat closure.
Want to support our work?
We welcome financial support to help us continue our push forward our legislative and other institutional initiatives, but we also understand how many folks might be suffering due to the pandemic-induced financial crisis. If you want to help but are unable to donate at this time, there’s a lot you can do! Share our work on social media, apply to join our volunteer force, or contact us to recommend your surgeon or share your story. We’d love to hear from you!