Beyond the headlines: January 2023

It can be hard to keep up with the ongoing stream of content – often pitched as more groundbreaking than is called for – and to integrate it with what we have heard from thought leaders, healthcare professionals, and the key experts: people impacted by breast cancer. Add social media, and it’s no surprise it’s tough to make sense of it all.

Enter our new monthly column, Beyond the headlines. We cut through the clutter to bring you the best of the content we’ve found. And we share why we believe the news is important and what it means for you. Links direct you to more information on the topic from LBBC and from trusted third-party partners.

DIEP flap reconstruction in jeopardy

A change to billing codes threatens health insurance coverage for DIEP flap, a reconstruction surgery that allows people to use their own skin and fat to rebuild the breast. The coding change, directed by the Centers for Medicare and Medicaid Services (CMS), pools all breast reconstruction surgeries under a single code rather than by individual procedure – regardless of differences in complexity, cost, and needed expertise. DIEP flap typically costs $50,000 or more, putting it out of reach for all but the wealthiest people.

This is an issue of equity. People with breast cancer have the right to breast reconstruction under the Women’s Health and Cancer Rights Act of 1998. It’s wrong to prevent those who can’t afford the out-of-pocket costs from accessing what may be the most appropriate surgery for their condition. LBBC is collaborating with partners to pressure CMS to re-add the individual billing codes, which we feel is the fastest way to rectify this wrong.

Learn more

• Dr. Potter’s advocacy page
• New policy change that can have an impact on breast cancer survivors (CBS News)
• Insurance companies set to end coverage for DIEP flap surgery (breastcancer.org)

Related LBBC content

• Upcoming webinar: You have options: Breast reconstruction decisions (February 1, 2023)
• Breast reconstruction options (article)
• Breast reconstruction decisions (video)
• Questions to ask your doctor (download)
• Siata Swaray on making breast reconstruction choices (blog)
• Catherine Guthrie on going flat (blog)

A win for lymphedema care

As part of its year-end omnibus bill, in December the U.S. Congress passed the Lymphedema Treatment Act. LBBC has supported this legislation and the relentless work of our partners at the Lymphedema Advocacy Group for the last 12 years. The law, which goes into effect in 2024, creates a new Medicare benefit category to cover the costs of compression garments, a key tool to preventing infection and managing lymphedema. The condition is a lifelong possible side effect that can result from damage caused by breast cancer surgery and cause swelling and build-up of lymph fluid in the skin of the arm, hand, breast, or torso. Until now, Medicare – and the many health insurers that follow Medicare’s lead – did not cover the costs of garments. Advocates will now focus on ensuring a smooth rollout of the law.

Learn more

• Lymphedema Advocacy Group
• Being persistent pays off in cancer advocacy (Cure Today)

Related LBBC content

• Lymphedema (article)
• Lymphedema treatments (article)
• Black race strongest predictor of lymphedema development after treatment for breast cancer (news)
• Living with lymphedema: Katie Budris (blog)
• A life with lymphedema: Bev Parker (blog)

Unequal access to mammography screening

The same day National Cancer Institute Director Monica Bertagnolli, MD, publicly shared her diagnosis of breast cancer after a routine mammogram, a study found more than one-quarter of women ages 45 to 84 in 10 states have limited access to mammography screening. That percentage remained consistent over the study period of 16 years. Women in these states traveled farther for mammograms, putting them at greater risk for higher staged cancers. (If you’re having trouble getting to a mammogram, ask your local doc about mobile mammography units and transportation help.)

We commend Dr. Bertagnolli for sharing her lived experiences, and LBBC will continue to advocate for equitable access to screening, and treatment, to lessen the burden, disparity, and suffering of all people with breast cancer.

Learn more

• NCI director Monica Bertagnolli has breast cancer (The Cancer Letter)
• Changes in geographic accessibility to mammography by state and rural-urban status (JNCI)

Related LBBC content

• Mammograms (article)
• 6 simple ways you can change the conversation around breast cancer (news)

(Our) people are talking

Young Advocate grad and LBBC Board Member Jamil Rivers blogged at Penn Medicine about how her diagnosis of de novo MBC motivated her to establish The Chrysalis Initiative to help Black women access equitable care.

Over on Twitter, Hear My Voice grad Abigail Johnston shared her blog that focused on the implications of the Cures Act, the 2016 federal legislation that requires healthcare providers to release health information “without delay.” At LBBC, we’re hearing more often from people who receive their diagnosis of breast cancer via electronic health record – before a conversation with a doctor. On her blog, Abigail grapples with the real-life implications of this legislation and offers strategies to people with cancer, care providers, and health administrators.

Learn more

• Emerging from the Chrysalis (Penn Medicine News)
• Results, when do patients want to know? (No Half Measures blog)

Related LBBC content

• Black with breast cancer (article)
• Strengthening care through communication (news)
• Shared voices: Learning from each other (video)
• Communication challenges with your healthcare team: Jenna Shillingburg (blog)