Unfortunately, the federal and state governments are not doing enough to prevent cervical cancer deaths, which are largely preventable, according to a recent report, “‘We Need Access’: Ending Preventable Deaths from Cervical Cancer in Rural Georgia,” by the Southern Rural Black Women’s Initiative (SRBWI) and Human Rights Watch.

Although no one should die from the disease, our research found that 4,290 women in the United States were estimated to die from cervical cancer in 2021 and in Georgia, Black women are almost one and a half times as likely to die of the disease as white women with disparities increasing at alarming rates as they age.

As one of nine Community-Based Researchers for this project I conducted over 20 interviews with Black women from South Georgia about their experiences accessing reproductive healthcare, as well as their knowledge about the cervical cancer disease and prevention.

As I anticipated, lack of medical insurance, as well as lack of reproductive and obstetrical and gynecological services located in rural counties were among the substantial barriers faced by most rural women with limited or no reliable transportation, as well as inadequate broadband (if at all) and other sources of public information.

Georgians for a Healthy Future has found that transportation is a barrier to health care for a large portion of Georgia’s population and 117 out of Georgia’s 159 counties are considered health transportation shortage areas.

However, in addition to the more obvious obstacles, I was continuously astonished by stories that revealed the extent to which women were traumatized by the worst kind of neglect and abuse at the hands of physicians who were less compassionate or lacked the resources and training needed to equitably treat all patients.

As reported by many of the 148 women interviewed for this research, internalized trauma has led to decades of generational mistrust and fear. Some women shared that they didn’t talk to doctors about their reproductive health because of mistrust of doctors and the system.

Others shared stories of discrimination within the medical system itself that had happened to them directly or to a family member. These instances ranged from insensitive comments to failures to treat early warning signs, to outwardly hostile remarks.

Unfortunately, where care is available and providers responsible, many women are simply not eligible because Georgia has not expanded Medicaid. Unlike states that have expanded Medicaid, Georgia still has a large population of uninsured women in need of cervical cancer coverage.

One of those women is Ilene, who I interviewed for the research. She told me about how after years of abnormal Pap tests, her doctor discovered what Ilene understood was a tumor that needed to be removed immediately. Her doctor told her she was on the verge of being diagnosed with cervical cancer.

She wasn’t insured, but the health department helped enroll her in a program, most likely Women’s Health Medicaid, so she could receive the surgery. However, she is no longer enrolled in the program and has experienced periods of being uninsured, which has affected her ability to seek routine gynecological care—especially important for someone with a history of a precancerous condition.

Ilene last went to see her gynecologist, who is only three miles away from her home, two years ago, but because she was uninsured, has not gone back since. Over 255,000 Georgians like Ilene have no options for affordable healthcare coverage. Expanding Medicaid is not only critical in removing barriers to care, but in sending a moral signal to correct past wrongs by improving physical and psychological health for those that have been systemically left out.

An expert human rights body of the United Nations that monitors racial discrimination has called out states like Georgia that have a substantial numbers of racial and ethnic minorities for not addressing this health crisis. The UN noted that in failing to expand Medicaid, these states are “failing to fully address racial disparities in access to affordable and quality health care.”

Cervical cancer awareness is about providing better access to health care, information and compassionate care – but mostly it’s about saving women’s lives. It’s time to take action to close the healthcare disparity gap and give all women access to healthcare services.

Olivia Coley Pearson, a community-based researcher for Southern Rural Black Women’s Initiative and Human Right Watch, is the first Black woman to be elected city commissioner of Douglas, Georgia. She has been honored as Human Rights Hero by the American Bar Association and is the 2021 Anti-Defamation League Kay Family Awardee for her work on voting and other human rights.