Breast cancer and the ballot box: political messages about screening prioritize votes over informed decisions

New York Governor Andrew Cuomo signed breast cancer screening legislation at the end of a “motorcycle ride for breast cancer” event in June 2016, garnering local and national news coverage.

In late February, the New York Department of Financial Services trumpeted this news to reporters: “Governor Cuomo Announces Action To Expand Cutting-Edge Breast Cancer Screening Options For Women.” The news release noted that New York’s health insurers must cover medically necessary 3-D mammograms without co-pays, coinsurance, and deductibles. The governor called his action “the most aggressive in the nation to expand access to breast cancer screenings.”

This must have sounded like a terrific idea to most New York women – all that screening and not paying a dime! Never mind that last year the U.S. Preventive Services Task Force (USPSTF) concluded: “The current evidence is insufficient to assess the benefits and harms of digital breast screening tomosynthesis (3-D mammograms) as a primary screening method for breast cancer.” Furthermore, the Task Force said the current evidence was not sufficient to assess benefits and harms of adjunctive screening (additional tests using the 3-D technology that add information or help interpret other tests) in women with dense breasts who have had an otherwise negative screening mammogram.

In other words, said the USPSTF, the evidence just isn’t there yet.

Breast cancer is good politics

As regular readers are well aware, lack of evidence won’t stop some health care institutions and news outlets from touting the claimed virtues of new medical interventions. Those of us who write about advances in technology are accustomed to hospitals and sellers of new machines pushing out such news releases as Baylor College of Medicine did in 2015, asserting that 3-D mammography “is the most effective technology available for early detection of breast cancer.” Using 3-D mammography was a “win-win-win for women,” the release said, with nary a word about the USPSTF recommendation.

But now we have a governor adopting the same questionable PR tactics. Really?

Breast cancer is good politics, and when votes are at stake, inconvenient or nuanced science gets overlooked. Cuomo also may be motivated by personal interest in the disease. His long-time girlfriend Sandra Lee underwent a double mastectomy two years ago. Personal stories are attention grabbers, and in 2016 Lee’s story was one among many that got the attention of the New York legislature. It passed a bill that removed financial barriers to breast cancer screening and mandated that insurers could not impose cost sharing for those services.

But was this really news? The Affordable Care Act already required insurers to cover breast cancer screening. Leslie Moran, senior vice president for the New York Health Plan Association, which represents insurers, says her members were already paying for medically necessary 3-D screenings. “The bottom line is the 2016 law really didn’t change any coverage or insurers’ practices related to coverage,” Moran says.

Journalists and the public should ask: Why is this news?

Cuomo’s February announcement clarified that tomosynthesis fits the definition of mammography screening under the 2016 law and “must be covered when medically necessary.” But again, says Moran, this was already happening. “When this came out we scratched our heads and said why is this news?”

Yet several state media outlets ran with the story. The Journal News led with “New York’s health insurers are now mandated to provide coverage for 3-D mammograms, Gov. Andrew Cuomo announced Tuesday,” reporting that 3-D screening is “more effective in detecting cancer in dense breast tissue which is common in women of color.” Linda Goler Blount, president of the Black Women’s Health Imperative called the governor’s action “a bold step for a state to require insurers to cover 3-D mammography with no cost-sharing.” There was no discussion of the evidence.

A Fox affiliate story claimed 3-D mammography technology would “save lives” — a claim not borne out by evidence.

The Syracuse Post Standard also picked up the governor’s announcement, and included a statement from Moran saying New York insurers were already covering all forms of medically necessary screening without cost to patients. The paper also gave a nod to the USPSTF recommendation and a conflicting one issued by the National Comprehensive Cancer Network. Politico heralded the good news to its subscribers. The Fox station in Watertown localized the story with a quote from a local hospital’s director of radiology: “This legislation is going to ensure that everyone has the highest level of breast cancer screening possible, regardless of their ability to pay.” Fox didn’t question whether everyone should get that level of screening.

State PR officers instructed to ‘churn out more good news’

Did the governor’s latest announcement about tomosynthesis have anything to do with his warning to public relations officers at 55 state agencies that they better start pumping out the news releases?  In mid-February, according to the New York Post, the governor’s communications director James Allen warned the agencies they had better “start churning out a lot more good news about the administration – or else.” The governor’s news release certainly qualified. Allen threatened, “‘If you don’t generate more press releases…changes will be made! ’” When the Post confirmed this with Allen, he said, “we make no apologies for holding state agencies to the highest standards and pushing them to keep New Yorkers informed about the excellent work they’re doing across the state.”

Breast cancer screening is too important for gubernatorial grandstanding. The governor’s news release and subsequent news coverage created the illusion that women are getting a new benefit. “[It] raises a public perception that may or may not be appropriate,” Moran said. Insurers have to cover 3-D mammography without cost sharing only if it’s medically necessary. Announcements like Cuomo’s raise women’s expectations that all 3-D mammography should be covered. And as the USPSTF recommendations make clear, evidence of medical necessity may be lacking in many cases where the use of 3-D mammography is promoted and may be requested.

When the service is denied because it’s not medically necessary, health plans are seen as the bad guys even though they’re within their rights, Moran adds. “We don’t like to legislate treatment and benefits because the laws are too difficult to change when the science changes,” she says. Cervical cancer screening is a good example. In New York yearly pap smears must be covered without cost-sharing even though new recommendations call for screening every three years if the latest pap test is clean.

Costs and harms of screening are not part of the conversation

The governor’s release did not mention the added costs of 3-D screening, which result in higher payments to doctors and hospitals and ultimately get factored into the insurance premiums everyone pays. One insurance source I spoke with, a specialist in pricing, ran some numbers for the New York and New Jersey region and found that the cost of tomosynthesis could increase the cost of a digital mammogram in a doctor’s office by about 38 percent and by slightly more than one-third in a hospital setting.

And then, there’s also growing recognition that overdiagnosis—treating cancers that don’t grow, that recede, or that progress so slowly the patient will die first – can cause real harm to patients who receive all forms of screening, including 3-D mammograms. Earlier this year, a large Danish study found that anywhere from 15% to nearly half of breast cancers found via screening represent overdiagnosis. (The numbers vary widely depending on whether ductal carcinoma in situ, an abnormal collection of cells that may or may not progress to cancer, is included in the tallies.) Women diagnosed with these cancers are exposed to invasive and toxic treatments for tumors that weren’t destined to cause symptoms. So the quest to find these cancers earlier, with state-of-the-art scanning technology, may simply be speeding up the point at which some of these women become “cancer patients” – without truly benefiting them.

No guarantee that outcomes will be better

I discussed all this with a Medicaid health plan director who didn’t want his name used. “There’s no evidence tomosynthesis leads to better outcomes,” he told me. “There are marginally better outcomes” when it comes to sensitivity (the percentage of women with cancer who will have that cancer detected by the test) and specificity (the percentage of women without cancer whom the test will give a negative result, which tells us how many false positives will be produced). “You get fewer false positives but that doesn’t guarantee long-term outcomes will be better as measured by death.”

The true narrative about tomosynthesis, which is different from the governor’s version, has a familiar story line. New technology comes along. It shows questionable improvement. It costs more. Doctors adopt it. And when politics get involved, says the health plan director, “science almost never rules when breast cancer is involved.”

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Donna Pinto

March 21, 2017 at 1:55 am

Thank you for this article. It is so nice to come across this piece that shares the truth and dispels the myth that has been perpetuated by Sandra Lee and her boyfriend Governor Cuomo. So much about their “story” is wrong — starting with the Dr. that told Sandra Lee that her DCIS was a ticking time bomb. Never was there any mention that there is no survival benefit to having the more extensive treatment of a double mastectomy. The fact that she was so pubic on GMA, People magazine and on social media telling women they should start getting mammograms in their 20s and 30s really was upsetting as her influence is huge (especially being on TV and having a boyfriend who is Governor of NY). As you mention, they completely left out the fact that thousands of women annually are potentially being over-diagnosed and over-treated for DCIS (due to mammography). I wrote a blog post called “DCIS is NOT a “Ticking Time Bomb” — What Women Really Need to Know. Since being diagnosed with DCIS in 2010, I have done countless hours of research and thankfully found the information about the over-diagnosis and over-treatment controversy. I’m grateful to the handful of doctors who have been out there publicly discussing this (like Dr. Laura Esserman and Dr. Shelley Hwang). I became interested in researching and writing about overdiagnosis from a patient perspective because it seemed no one else was! This problem is often overshadowed by stories like Sandra Lee’s and the constant push for more mammograms in the media and by the major pink charities who also ignore the science and guidelines from the USPTF. Thankfully research dollars are going towards better understanding of DCIS and the topic of “less is more” is now officially being studied. I hope you will review and write more about the latest DCIS studies: COMET, LORIS, LORD and also PRECISION: Preventing Unnecessary Breast Cancer Treatment (Cancer Research UK). Thank you so much for being a trusted resource over the years! Donna Pinto, DCIS 411