Navigating legislation and insurance for breast cancer screening

• Studies show these additional costs can discourage patients from seeking needed screenings in the future.

The big picture: More than 42,000 American women are expected to die of breast cancer this year; early detection through advanced screening methods can be crucial for survival.

• Disparities in breast cancer deaths still persist in Chicago, where Black women represent 56% of breast cancer deaths but only 28% of all women.
• Nationally, Black women die from the disease at a 40% higher rate than white women.

Catch up quick: Under the Affordable Care Act, most health plans must cover preventative yearly mammograms at no cost to the patient.

• Yes, but: For nearly half of patients over 40 who have "dense breast tissue," mammograms will detect fewer than 50% of cancers.
• These women are often directed by their doctor to get additional imaging, like an MRI or ultrasound, that can better spot potential tumors, but it's often not covered by insurance.

What they're saying: "Dense breast tissue exhibits similar density to tumors on mammograms, making it difficult to distinguish between normal tissue and potential abnormalities," Hiroyuki Abe, section chief of breast imaging at UChicago Medicine, tells Axios.

• "Additional imaging techniques, such as ultrasound or MRI, are recommended as supplemental modalities to detect cancers that may not be visible on the mammogram."

The latest: Last September a new federal rule started requiring health professionals to tell patients if they have dense breasts, warn them about the risks and order additional imaging, if necessary.

• But even in states like Illinois that have passed laws requiring insurance to cover additional imaging, many patients could still find themselves with a big unexpected bill.

Here's what to do:

Best case: If you're billed for additional imaging and have a "fully insured" health plan (like Blue Cross) that originates in Illinois and your doctor has deemed the imaging "medically necessary," you can appeal the charge by citing state law, which requires ultrasound and MRI coverage.

• The coverage will expand to molecular imaging in 2026.

Other cases: If your health plan originates in another state, check whether it's one of 34 that also mandates additional imaging coverage. If it's not, you will probably have to pay.

• If your health plan is self-funded — which 67% of U.S. workers' plans are, meaning your company pays directly for health care and thus determines coverage — ask your HR benefits manager whether it's covered. If it's not, you will probably have to pay.
• You will likely have to pay if you have a high-deductible health plan or a Medicare plan that has dropped coverage for extra imaging.

The intrigue: Even if your insurance plan doesn't cover advanced imaging, you can ask your employer to add it.

• "If [your company] hears from enough employees when they're designing their plan for the coming plan year, they very well could make changes," health care reform analyst Louise Norris tells Axios. "It's at the employer's discretion."

Between the lines: Despite the hefty charges, breast cancer prevention groups like Illinois-based My Density Matters and Susan G. Komen urge patients to get follow-up imaging if recommended by doctors.

• Komen previously offered vouchers to help pay for the service but stopped in 2023. Today, they still offer a helpline to discuss options with a navigator at 1-877-GO-KOMEN.

What's next: As of January, lawmakers in nine states had filed expanded screening proposals.

• National efforts have also been introduced without success so far.