Updated on Dec. 9.
In 2018, Zahra Khan, then in her early 40s, dreamed there was something in her left breast. When she woke, she examined her left side for lumps but felt nothing. She had the same dream twice more. The final dream, she said, prompted her to go to her primary care physician. But Khan’s doctor didn’t detect anything abnormal, either. The doctor assured Khan she was perfectly healthy, and that because she had a normal mammogram the year before, she didn’t need another until she turned 50. Khan persisted and asked for one anyway.
The mammogram identified a precancerous cell on the left side of her left breast.
“Had it truly not been for that instinct, driven by that dream — because I don’t normally dream about my body — it wouldn’t have been caught,” said Khan, a New Jersey-based accountant. Luckily, she also had health insurance, which covered the cost of her mammogram.
Current breast-imaging guidelines in the United States — which recommend a mammogram for women between 50 and 74 every two years — come from the U.S. Preventive Services Task Force. But these guidelines can leave women of color especially at risk, including women of South Asian descent like Khan. A 2018 Harvard study found that breast cancer diagnoses in the 40 to 49 age range are more common for Black, Hispanic, Ashkenazi Jewish and Asian women. The study posits that national mammography guidelines may have been created using data from largely White populations, which could explain the under-screening of younger women of color.
These guidelines can have life-or-death consequences. According to the American College of Radiology, in the United States, 50 percent of breast cancers that end in death are diagnosed in women before the age of 50. Subsequently, women like Khan are left to weigh whether to pay out of pocket for their mammograms, if their insurance companies won’t cover them, or whether to gamble against time.
“Early detection saves lives,” said Beulah Brent, chair executive of Sisters Working It Out, an organization in Chicago that works to minimize the barriers contributing to high breast cancer mortality rates in Black women.
Every year, an estimated 250,000 to 275,000 women are diagnosed with breast cancer in the United States. Incidence rates are highest among White women, followed closely by Black women. However, Black women have the highest breast cancer death rate, and they are 40 percent more likely to die of breast cancer than White women, according to the Centers for Disease Control and Prevention. While biological factors are partly to blame, social disparities play a large role; access to health care, differences in patient care and environmental factors are all contributors.
“If we can go and find out we’re Stage 1 or Stage 0, our chances are so much better to live,” said Brent, who is a Black woman.
The task force’s current guidelines, adopted in 2016, are based on the rationale that lowering the screening age may lead to false positives, overdiagnosis and overtreatment. It’s an argument that breast cancer prevention advocates, including a litany of medical organizations, reject. For the past five years, a Senate bill has actually placed a moratorium on the official age recommendations, effectively protecting access to annual mammograms with no co-pay starting at age 40.
But the moratorium, which prevents the task force guidelines from becoming the official word for insurance companies to follow, is set to expire on Jan. 1. Without the moratorium, insurance companies would have the right to deny a woman’s request for mammography at any age below 50. Out of pocket, a mammogram typically costs anywhere from $100 to $250.
While the issue has gone largely underreported for years, advocates are beginning to sound the alarm. Mary J. Blige this year launched the “P.O.W.E.R. of Sure” campaign, which encourages Black women to start getting a yearly mammogram starting at 40. As she told CBS2 Chicago in October: “I had an aunt who died from breast cancer and I believe that was because of lack of information, lack of health care, and I believe if she had all those things, she would be here today.”
The problem is only compounded by the coronavirus pandemic. It’s too soon to say what the effects will be for patients, but with many forgoing routine cancer screenings during stay-at-home orders, mammograms may only be delayed further.
In New Jersey, where Khan lives, routine preventive screenings were postponed at the start of the pandemic. That’s a worrying prospect: “Anything cancer-related [should never be] tabled or delayed, because they have impact,” she said.
Many experts argue that the task force’s guidelines are arbitrary. According to the Society of Breast Imaging, an organization that works to end contradictory recommendations around breast cancer screening, annual screenings starting at age 40 save approximately 6,500 more U.S. lives each year than screening every other year starting at age 50, as the task force recommends.
Crystal Winston, a Chicago-based public health advocate, received a Stage 0, or “precancerous,” breast cancer diagnosis in 2019. Winston, who is a Black woman, said she caught it early because she was proactive. When she sought out a mammogram at age 40 in 2015, everything looked normal. When she went again at the age of 44, it was a different story. After her second mammogram, Winston’s doctor found abnormalities on her right breast and called her in for an ultrasound. Winston saw two X-ray films side by side: her 2015 and 2019 mammogram.
Sure enough, there were calcifications this time — precancerous cells. She wondered if the doctors would have been as concerned if they didn’t have her first mammogram for comparison. “Thank God I had that mammogram at 40,” she said, because otherwise “they would have had nothing to compare it to.”
It took more than a month for Winston to receive a biopsy and know for sure that it was cancer. When she finally got the call, she was angry. She “sat in the dark for like an hour,” thinking about how she would tell her mom and her husband.
Because women’s health can differ based on numerous factors, including race and ethnicity, the American Society of Breast Surgeons, the primary leadership organization for surgeons who treat patients with breast disease, recommends against the task force’s current mammography standards.
Jill Dietz, president of the society, said her organization recommends that women over the age of 25 undergo a formal risk assessment for breast cancer. Then, starting at age 40, women of average risk are recommended to undergo an annual screening mammography. Dietz said the current guidelines “leave out the most vulnerable populations, young women and particularly young Black women.”
Carol Mangione, member of the U.S. Preventive Services Task Force and chief of internal medicine at the School of Medicine at the University of California at Los Angeles, argues that lowering age recommendations would cause more anxiety for women, which could lead to false positives and, in rare cases, unnecessary exposure to chemotherapy treatments.
“A small number of false positives could lead to overdiagnosis. For those individual patients, if that happens, it’s a big deal,” Mangione said.
But Scott Grosskreutz, doctor of radiology and member of the American College of Radiology, said that’s not necessarily a compelling argument: “When you think about it, you’ve got half of the fatal cancers occurring before age 50, you’ve got diagnoses of breast cancer in minority women, like Hispanics, Blacks and Asians, peaking before age 50, why in the world would you start screening at age 50?”
Grosskreutz said he has performed 12,000 biopsies, and that they typically can be done in 10 to 15 minutes. (“And the woman goes home with a Band-Aid on,” he said.) He believes the more concerning anxiety is the anxiety from a late-stage diagnosis, or the trauma endured by cancer itself.
The task force maintains that the national guidelines are what’s best for women without family history. (More than 75 percent of women diagnosed with breast cancer have no family history.)
“When the task force was formed by the federal government, these were recommendations for asymptomatic, average risk people,” Mangione said.
“We don’t get into tailored recommendations based on risk,” she continued. “We don’t have the scientific studies to be able to firmly make race or ethnically stratified recommendations.”
Mangione said there was an “evidence gap” in research in 2016 when the guidelines were released. She anticipates the task force will consider new scientific studies in their next iteration, though she said she is not sure when that will be.
Khan, whose dream urged her to press for a mammogram, calls herself “a breast cancer dodger.” In Khan’s case, all signs pointed to low risk. She was active and otherwise healthy. She didn’t have any family history of breast cancer, nor did she inherit the BRCA1 or BRCA2 mutation that would make her susceptible to an increased chance of cancer. There were no warning signs.
She, like Winston, was diagnosed at Stage 0. She likens the phase to Pac-Man, the arcade game. In Stage 0, the Pac-Man is sitting there, cursor blinking, ready to go. In Stage 1, the Pac-Man’s mouth is open. It has the ability to keep going. And once it starts, it doesn’t stop, invading tissue and bones, all the while making it more difficult to control with a late diagnosis. All cancers that eventually become invasive start off at Stage 0.
“I hope other minorities have the same chance that I did, which is to be a breast cancer dodger, rather than a survivor of Stages 1 through 4.”
After her diagnosis, Khan opted for a preventive double mastectomy with simultaneous reconstruction and started educating women in her South Asian Muslim community in Princeton, N.J. She came up against social taboos, she said, and found that many in her community shied away from discussing issues of women’s health. Still, she kept organizing families for advocacy meetings and PowerPoint presentations on prevention, refusing to separate men and women and emphasizing how important it is for everyone to understand the risks.
“There is a lot of misinformation and I think misapplication of modesty concepts,” she said. “I do believe in the religious obligation to stay healthy and to take care of yourself as a woman, but also to be able to talk about your health in a mixed gathering. Because by the time South Asian women get diagnosed, the mortality rates are really high.”
Winston, like Khan, opted for a double mastectomy after her diagnosis. By that point, Winston had taken off work for a mammogram, an ultrasound, two biopsies and a day of waiting for her results. She had racked up transportation costs, $12 visitor parking fees and co-pays; she needed appointments with breast surgeons, radiologists and oncologists.
Still, Winston considers herself among the privileged to have health insurance. She received a bill for $400,000 but only had to pay a $2,000 deductible.
“Had I not been an advocate for myself and the work that I do, I would have easily fallen into the cracks,” she said.
The lifesaving moratorium, meanwhile, is set to expire at the end of this year. In February, 21 advocacy and medical organizations, including Susan G. Komen and the American College of Radiology, signed a coalition letter to Senate leadership asking that the moratorium be extended to 2025. They have yet to receive confirmation.
Missouri in August passed a bill to protect itself against the task force recommendations; Hawaii has introduced a similar measure in its legislature. The two states could become a model for other regions of the country to follow as well.
“You attach policies to just a number and you’re not looking at the whole person or the whole community. We’re not a monolith,” Winston said. “Not everybody fits into this category. … It’s different for each of us.”
Editor’s Note: A previous version of this article didn’t specify that Missouri has already passed its bill. We regret the error.