Shelly Brostoff is exhausted trying to get Medicare to cover a breast cancer screening she credits with saving her life.
In January 2014, Brostoff was diagnosed with Stage 1 breast cancer after noticing the nipple area of her left breast felt hardened. At first, she and her gynecologist thought it might be scar tissue from a breast reduction surgery years earlier. The doctor ordered a mammogram with the additional screening test called ABUS, an automated breast ultrasound known for its sensitivity in detecting breast cancer in dense breasts like Brostoff’s. The ultrasound caught what the mammogram didn’t, Brostoff said.
Since then, she has gotten the procedure every year, with insurance through Medicare and BlueCross BlueShield of Illinois’ supplement plan. Not getting the test isn’t an option because “it’s a matter of life and death,” said Brostoff, 78, of north suburban Long Grove.
Everything went smoothly for years until 2023, when Highland Park Hospital said Medicare started denying her claims for the supplemental screening exam and gave her a statement to sign agreeing to pay the amount billed.
For women with dense breasts, ABUS scans are important screening tests for early detection and recurrence of breast cancer. That’s because in dense breasts it’s harder to distinguish cancer from fibrous and glandular tissue, which both appear white on breast X-rays. According to the Brem Foundation, a dual ultrasound and mammogram increases breast cancer detection in women in this category by more than 55%. This type of ultrasound can be a life-saving measure for many women. But Brostoff and others say they are now being charged for a crucial procedure insurance previously covered entirely.
Linda Forman of Evanston can attest to how critical the procedure is. “I am alive and well because of a screening ABUS ultrasound test,” Forman said. She discovered her triple negative breast cancer diagnosis after a secondary screening.
In spring 2017, she received a “happy letter” following her routine annual mammogram. Forman had a dense breast diagnosis. She only decided to get an ABUS on her own at the encouragement of her daughter and curiosity about the then-new technology. The findings prompted a biopsy.
“The doctors could not feel the tumor, even when they knew where it was located. It was that small,” said Forman, 81, who runs her own accounting firm. “But it was aggressive and I had one chance to rid the cancer, since recurrence would have few options.”
Now in remission, Forman said she didn’t pay for the scan because Medicare and United Healthcare’s supplement plan did. In November 2022, though, she learned of Medicare’s decision to no longer cover the screenings and for patients to sign notices of financial responsibility in case of claim denials. Skokie Hospital offered a $536 discounted rate, she said. However, Medicare agreed to cover the tab. But each year since, she’s been charged $174 to $235 for related radiologist fees, which she never had to pay before.
If Medicare or private insurance doesn’t pay, experts say ABUS screening costs from $250 to as much as $555, depending on where the procedure is done. For some, the costs of follow-up tests can be a barrier. One study showed many Medicare beneficiaries would skip additional breast imaging if they knew they had to pay.
When contacted by the Sun-Times, the Office of Communications at the Centers for Medicare & Medicaid Services (CMS) declined to comment on specific questions and said the Health and Human Services Department “has issued a pause on mass communications and public appearances that are not directly related to emergencies or critical to preserving health.”
In a statement, a spokesperson for Aetna said the insurer has not made any changes to its ABUS coverage, and that ABUS is covered through “Aetna medical benefits, subject to plan benefit design and applicable federal and state regulatory requirements.”
Blue Cross and Blue Shield of Illinois approves “the vast majority of ABUS claims that come to us,” a spokesperson said.
Both insurers encouraged people with questions about claims and coverage to call the number on their member ID cards.
Why breast density matters
Not all dense breasts are the same.
Dr. Kirti Kulkarni, medical director of Breast Community Practices at University of Chicago Medicine, said there are four categories of breast density, ranging from type A to D. “A” being mostly fatty tissue and “D” being extremely dense. Dense breasts have more connective and glandular than fatty tissue.
“Up to 40% of women have category C,” Kulkarni said, meaning most of the breast tissue is dense but there are still dispersed areas of fatty tissue. Having a closer look through supplemental screenings not only can help radiologists detect small cancers but also rule out other possibilities. For example, she said, benign masses can appear white on mammograms as well.
In a move to prevent and detect breast cancer early, the Food and Drug Administration updated its mammography regulations requiring that women be clearly informed if they have dense breasts. The ruling went into effect Sept. 10, 2024.
But solely having dense breasts isn’t enough for insurance to pay.
There are certain criteria to meet for extra breast screenings such as ultrasounds and MRIs to be covered procedures under Medicare, said Sarah Murdoch, director of client services at the New York-based Medicare Rights Center, which oversees a national help line serving beneficiaries, their caregivers and family members.
One is the doctor stating in medical record documentation that it’s “medically necessary” because this person has a history of breast cancer, she said. Equally important, is the patient’s claim coding — listing as diagnostic because the doctor suspects a problem or there’s an inconclusive mammogram. “Ultrasounds and MRIs are not covered as screenings, but they are covered as diagnostic services,” Murdoch said.
For original Medicare beneficiaries, that means responsibility for 20% co-insurance.
Closing the gap
There is no overall national screening law saying ABUS must be covered, said Leslie Ferris Yerger of the Hawthorn Woods-based nonprofit, My Density Matters. “Illinois has probably one of the best insurance laws in the country covering screenings for women with dense breasts, and people still have trouble getting it,” she said.
In Illinois, coverage for comprehensive ultrasounds and MRIs, when deemed medically necessary, is provided at no cost if routine mammogram results show dense breasts. However, insurers still can deny claims even when deemed medically necessary, if the coding is off or medical records aren’t documented correctly, or are missing. If insurers leverage such reasons for noncoverage, potentially high costs are passed on to beneficiaries.
A new law taking effect next year requires insurance to cover MRIs and other breast imaging for those with dense breasts or if a doctor determines as medically necessary. Some federal and other plans, however, are exempt. Over the years, the state has enacted, updated and expanded laws on this issue.
Meanwhile, at the federal level, Rep. Jan Schakowsky, D-Ill., is co-sponsoring the “Find It Early Act,” a bill that would guarantee all health plans cover additional screenings and diagnostic imaging tests such as breast ultrasounds and MRIs — with no out-of-pocket hit.
Brostoff and her husband, Fred, of Long Grove emailed Schakowsky last fall asking for congressional assistance to push Medicare to change their coverage. They’d gone through one appeals process — talking to hospital billing, submitting additional medical documentation, collecting diagnostic codes so the claim is processed correctly and refiling paperwork with a doctor’s letter explaining the ABUS as “medically necessary and reasonable.” Despite their efforts, Medicare denied that 2023 appeal. It happened again last year; the latest denial letter arrived in December.
“It’s very frustrating, and the back and forth is exhausting,” Brostoff said of the experience. She expects a repeat after her yearly mammogram in April.
“We were convinced it would never get resolved,” her husband said.
Feeling defeated, they paid the $240 bill. “What makes me feel very sad is there are many women that need to have this test but can’t afford to pay,” Brostoff said.