The death rate from cervical cancer in the United States is considerably higher than previously estimated and the disparity in death rates between black women and white women is significantly wider, according to a study published Monday in the journal Cancer.
The rate at which black American women are dying from the disease is comparable to that of women in many poor developing nations, researchers reported. What makes the findings especially disturbing, said experts not involved in the research, is that when screening guidelines and follow-up monitoring are pursued, cervical cancer is largely preventable.
“This shows that our disparities are even worse than we feared,” said Dr. Kathleen M. Schmeler, an associate professor of gynecologic oncology at the University of Texas M. D. Anderson Cancer Center. “We have screenings that are great, but many women in America are not getting them. And now I have even more concerns going forward, with the” expected “repeal of the Affordable Care Act, which covers screening, and the closing of family planning clinics, which do much of that screening.”
The racial disparity had been noted in earlier studies, but it had been thought to have narrowed because cervical cancer death rates for black women were declining. But this study said that the gap was far greater than believed.
In the new analysis, the mortality rate for black women was 10.1 per 100,000. For white women, it is 4.7 per 100,000.
Previous studies had put those figures at 5.7 and 3.2.
The new rates do not reflect a rise in the number of deaths, which recent estimates put at more than 4,000 a year in the United States. Instead, the figures come from a re-examination of existing numbers, in an adjusted context.
Typically, death rates for cervical cancer are calculated by assessing the number of women who die from a disease against the general population at risk for it. But these epidemiologists, who looked at health data from 2000 to 2012, also excluded women who had had hysterectomies from that larger population. A hysterectomy almost always removes the cervix, and thus the possibility that a woman will develop cervical cancer.
“We don’t include men in our calculation because they are not at risk for cervical cancer and by the same measure, we shouldn’t include women who don’t have a cervix,” said Anne F. Rositch, the lead author and an assistant professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health. “If we want to look at how well our programs are doing, we have to look at the women we’re targeting.”
Although the study did not explore reasons for the racial disparity, some doctors said it could reflect unequal access to screening, ability to pursue early-warning test results, and insurance coverage. A recent study in the journal Gynecologic Oncology that looked at 15,194 patients with advanced cervical cancer found that more than half did not receive treatment considered to be standard of care, and that those patients were more likely to be black and poor.
According to the analysis published Monday, the hysterectomy-corrected mortality rates put black American women on par with women living in some underdeveloped countries in Latin America, Asia and Africa, particularly in sub-Saharan Africa.
Certainly removing women who had hysterectomies from the data pool had a significant effect. About 20 percent of women in the United States have a hysterectomy, often for problems unrelated to cancer, like excessive bleeding and fibroids, with prevalence higher among black women than white.
In years to come, mortality and incidence rates should decline as more women receive HPV vaccines, which prevents cervical cancer.
In recent years, with recognition of the slow progression of the disease, the success of the vaccine and more sophisticated screening tests, guidelines for cervical cancer assessments have shifted. Depending on circumstances, some women need to be screened only every five years.
The guidelines suggest that screening end at age 65 for women who have had two or three consecutive negative results in the previous decade.
The current study says that the greatest mortality rates hit black women 85 and older.
But experts said the new findings did not necessarily point to the need to revisit the upper end of the guidelines. Cervical cancer progresses so slowly, with so many early-warning stages, experts said, that it is highly unlikely that a 65-year-old woman who had met guidelines’ requirements would subsequently develop the disease.
But given the rigor of the guidelines and screenings, Dr. Rositch said, why do American women not only still get cervical cancer but die from it? And with such pronounced racial and age divides?
Dr. Otis W. Brawley, the chief medical officer for the American Cancer Society, said that the new study pointed to inequity of access and good treatment.
“When we look at the difference between black and white, and rich and poor, we find the same disparity,” he said. “The quality of assessment and follow-up treatment can be different. The question becomes: how do we get adequate preventive care to all people?”
Although this study looked at the divide between black and white women, Dr. Schmeler said that it implicitly raised alarms for other poor women of color. Along border towns in Texas, with an overwhelmingly poor, Hispanic population, she said that rates of incidence and death from cervical cancer were considerably higher than national figures.
Studies such as this latest one consider death rates from a broad epidemiological perspective; statistically, its grimmest news is about older black women. But on the ground, Dr. M. Margaret Kemeny, the director of the Queens Cancer Center of Queens Hospital, a public institution in New York, said she had treated many younger women of color with a diagnosis of cervical cancer. Although the disease is preventable and, if detected early, treatable, Dr. Kemeny’s patients have often never had Pap smears.
She recently had to perform total pelvic exenterations on two women, each with recurring cervical cancer, one Chinese, the other Hispanic. She removed the cervix, vagina, rectum and bladder, inserting two ostomy bags, which are worn outside the body to collect urine and stool. “One was 39,” Dr. Kemeny said, “and the other was 25.”