(Montgomery, Alabama) – The Federal and many state and local governments are not doing enough to prevent cervical cancer deaths, which are largely preventable, Human Rights Watch said in a report issued today. Approximately 4,200 women a year die in the United States from cervical cancer, including disproportionately high numbers of Black women.
The 103-page report, “‘It Should Not Happen’: Alabama’s Failure to Prevent Cervical Cancer Death in the Black Belt,” documents how state and federal policies contribute to a treacherous reproductive health environment in Alabama, where women are dying from cervical cancer at rates higher than in any other US state. The report presents the experiences of women mostly from the Alabama Black Belt, a largely rural region of Alabama that is primarily African American and has high rates of poverty and poor physical health. Human Rights Watch found that governments are not doing enough to facilitate access to reproductive health care services and provide information to prevent these deaths.
“Every woman who dies from cervical cancer has been failed by the country’s health and education systems,” said Kelly Flannery, NYU fellow at Human Rights Watch. “Poverty and exclusion exacerbate this disease, and when Black women die from the disease at much higher rates than white women, larger patterns of racial disparity and discrimination are also at play.”
Human Rights Watch interviewed more than 100 women, medical experts, service providers and others between November 2017 and April 2018. Researchers also sought to determine why Black women are more likely to die from cervical cancer than any other racial or ethnic group.
Nationally, Black women are more than one and half times as likely to die from cervical cancer as white women. But cervical cancer rates have been historically miscalculated, most likely underestimating the true racial disparities in mortality rates. If Alabama reflects nationwide trends, Human Rights Watch concluded, the corrected rate would most likely show that Black women die at over twice the rate of white women from this preventable and curable disease. Alabama’s own data shows that 5.2 Black women die of cervical cancer for every 2.7 white women.
Black Alabamians are twice as likely to live in poverty as white Alabamians. Studies have found that even when Black women with cervical cancer earn as much as white women, they are still at higher risk of death from the disease.
Women interviewed said they were forced to delay or forego care or bear an enormous financial burden because they did not have consistent health insurance, a local gynecologist, or transportation to appointments.
“I believe that if my mom was able to have Medicaid, I believe that my Mom could have had a hysterectomy, and I believe that it would have prevented the precancerous cells from growing and turning to a tumor,” said Karen Snipes, whose mother died of cervical cancer in 2017. “I think that by her not having healthcare [insurance] that it kind of [was] like her death sentence.”
The vast majority of cervical cancer cases derive from the human papillomavirus, for which there is an effective vaccine. Simple screenings, including HPV and Pap tests, detect early changes in cervical cells that indicate cervical cancer risk. With timely follow up, precancerous lesions can easily be monitored or removed before developing into cancer. Cervical cancer caught and treated early enough has a 93 percent five-year survival rate, but the rate drops dramatically the later the cancer is diagnosed.
Women in Alabama interviewed said that a lack of health insurance coverage was one of the most significant barriers to cervical cancer care. The only state government program designed to link uninsured and underinsured women to care does not cover treatment for cervical cancer or precancerous lesions and is hampered by financial constraints.
Alabama, along with Texas, has one of the lowest Medicaid eligibility levels in the nation, but it could expand Medicaid eligibility to provide more consistent access to preventive and primary health care services. Instead, state, and federal governments are trying to make access to coverage more difficult by threatening to add work requirements for Medicaid, and moving to weaken health plans.
Fewer than half of the counties in Alabama, and only four of the 17 counties in the Black Belt, have a practicing gynecologist. Rural women must drive long distances for essential gynecological care, and the cost and burden are often too much. Women described having to choose between reproductive health care and other basic needs such as electricity, medication, and food.
Women, providers, and local advocates also reported severe problems with access to health information in Alabama. Some women, including those with children who could have been vaccinated, reported not knowing about the life-saving HPV vaccine. Others did not know that they could get free or low cost cervical-cancer-related services from the public health department.
Many Alabama school systems, particularly in the Black Belt, already underfunded due to reliance on local property taxes and legacy of constitutional segregation that de facto continues, often neglect sexual health education. The state does not require schools to provide sexual health education, but if they choose to do so, they are statutorily required to place a heavy emphasis on abstinence and stigmatize homosexuality – limiting children’s access to comprehensive, non-judgmental and evidence-based information. Sexual health curricula should include information about cervical cancer risk and the need for testing.
Programs prioritizing community engagement and education can help disrupt harmful social norms, connect women to care, and reduce health disparities in cervical cancer outcome. Alabama’s Black Belt is also the site of the racist and unethical Tuskegee syphilis experiments, and federally-funded coerced sterilizations of many poor, and primarily Black, women and girls. These historical human rights abuses illustrate how past structural racism in medical practices can continue to undermine community trust in the medical profession – creating an additional and significant barrier to care. One publicly-funded program that has established peer support and engagement networks in the Black Belt to connect otherwise reticent women to care and help disrupt misgivings about the health care system lost federal funding after 15 years of operation in 2017 and is struggling to continue its work without sufficient state funding.
“Restrictive coverage, lack of information and a shortage of doctors in rural areas all contribute to women dying of cervical cancer in the Alabama Black Belt.” Flannery said. “Alabama and the US have the tools to stop these deaths – they just haven’t made it a priority.”