‘We Keep Doing It for Other Women’

For almost two years, Sheila Mikhail says her breast cancer advocacy efforts have been “obsessive, like a honey badger.”

The biotech executive and breast cancer survivor has written letters, posted on social media, met with women’s advocacy groups, spoken on Capitol Hill, visited medical centers, and called physicians, leaders, and legislators. Her goal? Spread awareness that dense breast tissue can interfere with mammograms, and convince insurers to cover supplemental screenings.

“With all the breast cancer walks, pink parades, and celebrations, many of us think we’ve got breast cancer handled,” Mikhail told the North Carolina State Health Plan Board of Trustees recently. “But 42,000 women will die from breast cancer this year: 115 deaths per day. That’s like a medium-sized plane crashing every single day.” 

Mikhail knows she could have been one of those numbers. 

She discovered her own breast cancer at Stage 2 in late 2022, following years of “all-clear” mammograms. As we reported earlier this year, mammograms are the standard screening procedure for breast cancer, but they are less effective for women with dense breasts, like Mikhail and about 50 percent of women in the United States.

Other options, like breast MRIs or breast ultrasounds, are more effective at identifying growths in dense tissue. The problem is that these procedures are often considered “supplemental screening” and aren’t covered by insurance.

Thirty-one states already require private insurers to offer additional coverage. North Carolina is not one of them, but the State Health Plan Board of Trustees is expected to decide next year whether to expand it for thousands of residents.

The group has an opportunity to do the right thing, Mikhail told the 10-member body in October. The board oversees health benefits for nearly three-quarters of a million state employees, teachers, retirees, and their dependents. Of that group, 61 percent are women. In total, nearly 227,000 women with dense breasts stand to benefit from the change.

Approving supplemental screening coverage could save the state millions of dollars a year, she said. Breast MRIs —around $1,000 a procedure—are still far less expensive than paying for stage 3 or 4 cancer treatment, which one study on NC women who receive Medicaid found can exceed $150,000 in one year. 

“It’s a no-brainer,” Mikhail said, gesturing for emphasis. “Not only is it the morally right thing to do for women, their family, and our communities, it’s the most economic and affordable thing to do.”

NC Medicaid already covers additional screenings—like MRIs—for lower-income women with dense breasts, totalling more than 156,000 women in the state. But the board’s decision could expand that coverage even more. 

“You have an incredible opportunity to make a difference for women in North Carolina,” said Democratic Sen. Mary Wills Bode, who spoke alongside Mikhail. “Very few people get to make an impact of this size.”

Bode, Mikhail, and several other legislators have already tried to make a change through the state legislature. Two bills aimed at requiring coverage of supplemental screenings, SB 584 and HB 560, are stalled in the Senate Committee on Rules and Operations. But now, as the State Health Plan shifts administrators from Blue Cross NC to Aetna, Mikhail and others think it’s a good time to expand coverage.

The Board of Trustees should have a direction by the first quarter of 2025, said chairman and State Treasurer Dale Folwell, whose term ends January 1, 2025. As with any decision, he said the board’s mantra is “do the most good for the most number of people.”

While Mikhail waits for that decision, she can celebrate changes at Duke University Health System, where her cancer went undetected for years.

Officials updated mammography guidelines to include recommendations that women with very dense breasts be considered a higher-risk group and offered additional screening, said Dr. Richard Shannon, senior vice president and chief medical officer for Duke University Health System and a recipient of Mikhail’s outreach efforts. These new guidelines are being shared with primary care physicians and women’s health physicians across Duke.

But Shannon said that education is only one lever. Ultimately, it comes down to funding.

“Even as we educate our providers and increase public awareness about the added risk in women with dense breast tissues, many insurers decline to pay for secondary screening tests such as MRI and ultrasound, creating a barrier to care that disproportionately affects low-income women and families,” he said in a statement.

This is why Mikhail, despite the emotional drain of sharing her most vulnerable experience over and over, remains committed to what she calls her “guerilla warfare” as long as it takes. 

“We keep doing it for other women,” she said, referring to fellow survivors and advocates. “There’s no benefit for any of us. We just don’t want other women to go through unnecessary pain when it’s avoidable.”

Sara Israelsen-Hartley, a journalist with a master’s degree in public policy, lives in Raleigh with her family. Read more of her work here.