Since the early 1970s, studies have shown that black Americans have a higher death rate from cancer than any other racial or ethnic group. This is especially true when it comes to breast cancer. A study published last week in the journal Cancer Epidemiology found that, in a survey of 41 of America’s largest cities, black women with breast cancer are on average 40 percent more likely to die than their white counterparts.
The principal reason for this disparity is the disconnect between the nation’s discovery and delivery enterprises — between what we know and what we do about sick Americans.
In 1967, I started working in Harlem as a cancer surgeon. At that time, and through the 1980s, Harlem was a community of poor black people, and the death rate from cancer there was among the highest in the country. At Harlem Hospital, the five-year survival rate for breast cancer was a dismal 39 percent, compared with roughly 75 percent for Americans over all.
I imagined that I could “cut cancer out of Harlem.” But I soon learned that the disease would not yield to a surgeon’s knife. Why? Because the patients were coming in too late. I examined many black women who were visiting the clinic for the first time and who already had incurable breast cancer, sometimes with ulcerated and bleeding breast masses.
I began to see that cancer’s invasiveness was deeply rooted in human conditions, and began asking questions such as: What does it mean to be black in America? What does it mean to be poor? And what does it mean to be black and poor and at the same time to have cancer? Saving lives under these conditions has dominated my career ever since.
The reasons for black and white differences in breast cancer outcomes are complex. Although the incidence of the disease is higher among white women, black women are more likely to die from it. Young black women tend to develop a particularly aggressive form, which no doubt contributes to the disparity. But for many years, the dominant cause of higher mortality has been late-stage disease at the time of initial treatment, in part as a result of black women being less likely to undergo mammography.
However, this gap has been closed. The Centers for Disease Control and Prevention reports that the rate of mammography is now the same in black and white women. What remains different is what happens after the mammogram: Black women experience significant delays in diagnosis and treatment. According to the C.D.C., even when they have similar insurance coverage, 20 percent of black women with an abnormal mammogram wait more than 60 days for a diagnosis, compared with 12 percent of white women. And 31 percent of black women wait 30 days to begin treatment, compared with 18 percent of white women.
The Institute of Medicine reported in 2003 that black Americans with health insurance similar to that of white Americans are, at times, less likely to be recommended by physicians to receive curative cancer care. I don’t think this is because doctors are racist, but rather that they make assumptions about race that can be harmful. For example, a specialist treating a poor black woman may doubt that she will comply with a complex treatment and recommend a simpler, but noncurative, therapy instead.
The good news is that studies show that black and white women who receive the same breast cancer treatment at the same stage of the disease are equally likely to survive. If we can eliminate barriers to early diagnosis and quality treatment in black women, we can close the racial mortality gap.
In 1971, Richard M. Nixon declared a “war on cancer” and signed the National Cancer Act, resulting in well-justified increases in the nation’s investment in cancer research. But the act said nothing about the other crucial aspect of saving lives: the delivery of care. As a result, not all Americans have benefited equally from scientific and medical progress.
Similarly, in recent years, the debate has focused on screening, with much less concern about what happens after. We should be expanding access to mammograms and colonoscopies, and debating the frequency and ages at which they are offered. But today, too many people are reluctant to undergo screening at all, because they fear they cannot afford treatment if they are found to have cancer. Screening is much less effective if we cannot ensure access to timely care.
At Harlem Hospital, we provided free breast cancer screening beginning in 1979. But screening alone was not enough. Patients — who not only often lacked health insurance, but also struggled with a limited education and distrust of doctors — needed help making their way through the medical system. So in 1990, we pioneered the patient navigation program, which provided one-on-one support to patients with abnormal findings. The navigators helped patients obtain insurance, made sure they understood what was recommended, guided them through appointments and allayed their fears. Applying the two interventions in Harlem — breast cancer screening and patient navigation — raised the five-year breast cancer survival rate from 39 percent to 70 percent in 2000.
In 2005, President George W. Bush signed the Patient Navigator Outreach and Chronic Disease Prevention Act, based on the Harlem model, which provided funds for these programs. In 2012, the American College of Surgeons made patient navigation a standard of care, required for cancer centers seeking accreditation beginning next year. And the Affordable Care Act required that patient navigators be used to help Americans obtain insurance under the exchanges.
The health care reform act is an excellent start toward providing universal health insurance. But access to insurance does not assure access to quality health care, especially for the poor and less educated. No patient with cancer should go untreated or experience a delay in treatment that diminishes survival. People should not die from cancer because they are poor or black. This is more than a medical and scientific issue. This is a moral issue.
