Since August, Linda Finklea has passed out flyers, met farm workers and attended county and city meetings.

Tamika Dial organized a focus group that had a cross section of people in her community. She also hosted an event with the police department. And both have visited churches in the Black Belt.

Their goal is the same: encouraging women to do all they can to prevent cervical cancer.

“I have hit every African American church there is, and I have spoken to them about cervical cancer and HPV (human papillomavirus).” Dial said. “African Americans are more prone to this, so I have done my study and I have done my homework, and I have made sure.”

It’s part of a broad effort from two organizations trying to combat a disease that continues to plague Alabama, especially among minority groups and communities with lower incomes.

Human Rights Watch, in partnership with the Southern Rural Black Women’s Initiative for Economic and Social Justice, recruited advocates to organize and speak with their communities about getting tested and petition state officials to enact measures to address the continuing hold cervical has for Alabama residents.

The advocates have lived years, many times decades, in the communities they serve. They met hundreds of people in that time and forged close networks with many of the residents. They are their friends, family, neighbors and loved ones, and earned the trust of their communities, offering them an air of credibility.

“You really see the community relationships, the trust that they have, the networks, as an important way to share this information and address some of the barriers that we found,” said Annerieke Smaak Daniel, a researcher in the Women’s Rights Division at Human Rights Watch.

At the same time, TogetHER for Health, along with the Alabama Department of Public Health, established a statewide action plan called Operation Wipe Out with the goal of eliminating cervical cancer in Alabama.

“The real take home message is, ‘Look, we have very poor mortality and incident rates in our state,’ and that hasn’t changed over many decades now,” said Heather White, executive director of TogetHER for Health, an organization working to address the problem of cervical cancer in Alabama.

High incidence, high death rates

Alabama continues to be one of the leaders in the U.S. in terms of cervical cancer incidence rates and mortality rates. According to the Centers for Disease Control and Prevention, Alabama had 8.9 cases of cervical cancer per 100,000 people in 2020, tied with Texas and West Virginia for the second-highest rate in the nation. Only Oklahoma was higher.

The state also tied with Mississippi for the second-highest rate of cervical cancer deaths in 2020, at 3.3 deaths per 100,000 people. Only Oklahoma is higher at 3.8 deaths per 100,000 people.

A lack of access to health care is a driving factor. Cervical cancer rates in Alabama are higher among minority groups, and within rural areas.

“Unfortunately, cervical cancer can also be a disease of poverty,” said Jennifer Young Pierce, a professor of gynecology and oncology at the University of South Alabama. “Because we don’t have health care available to every woman in this state.”

According to a 2022 report on cervical cancer from the Alabama Department of Public Health, the cervical cancer rate averaged 9.1 per 100,000 people in Alabama from 2010 to 2019. For white women, it was 8.6 per 100,000 people. For Black women, it was 11.1.

White women were also more likely to survive cervical cancer than Black women. From 2010 to 2019, the mortality rate for white women was 2.9 deaths per 100,000 people. The rate for Black women was 4.7 deaths per 100,000 people.

Unlike many other types of cancers that involve several different factors, most of the cases linked to cervical cancer can be traced to a single source, the human papillomavirus (HPV), that is often transmitted through sexual contact.

In most instances, the infections clear within a year or two. But in some cases, they persist in ways that lead to lesions or abnormal cells that could then eventually turn into cancer. The incubation period is long, and many are not symptomatic as the process takes over several years. Without proper screening or testing, many women may not realize they have an issue.

Early detection and treatment are critical to surviving the disease because, like other cancers, the mortality rate increases with each day that a person is left untreated.

According to a report from Human Rights Watch published in 2018, cervical cancers that are detected at the first stage, when the cancer is just beginning, have a five-year survival rate between 80-93%. It declines to between 58-63% for stage II and falls to about 16% when the cancer reaches stage IV.

A lack of infrastructure

Location plays an important role in health outcomes according to the report, with those living in rural areas more likely to be diagnosed with cervical cancer than in the more urban areas of the state. According to a map that accompanied the report, rural counties like Chambers, Chilton, Dallas and Randolph counties had higher incidence rates for cervical cancer.

“Our state lacks the health care infrastructure that supports early detection, screening availability,” said Jane Adams,government relations director for the American Cancer Society Cancer Action Network. “We see women every day in cancer centers across the state that have a deadly diagnosis of cervical cancer that could have been prevented, could have been treated earlier, that could have had an early-stage diagnosis.”

Poverty plays a major factor in the toll of the disease. Families on the lower end of the socioeconomic scale are less able to take time off work to visit a clinician given all the demands they face daily.

Lower-income women are also more likely to work jobs without health insurance, making them less likely to be able to afford the medical care needed to be screened for cervical cancer.

“The lack of access to affordable health care was a major barrier that we have seen,” Daniel said.

Human Rights Watch published a report in 2018 that outlined several obstacles that lower income and minority women face in trying to access health care related to cervical cancer. A lack of access to preventative care was a major factor to higher rates of cervical cancer.

“We interviewed so many women who just couldn’t get screening, the cervical cancer screenings they needed because they couldn’t afford it,” Daniel said. “They didn’t have health insurance. They didn’t know where they could go for free or low-cost screenings. And without access to affordable care, many women just don’t go.”

Many parts of Alabama do not have an adequate number of gynecologists or medical providers to serve the needs of the women in the community when the report was published in 2018. Daniel said there were four counties with practicing obstetricians and gynecologists in the 17 Black Belt counties at the time of the report.

Many of the women reported only visiting a gynecologist when they have a reproductive health problem, and do not do regular visits. Some had to travel 40 minutes to two-and-a-half hours for reproductive health care appointments. For some, it is easier to cross state lines than to see a gynecologist in the state.

One person interviewed in the study said she pays up to $150 for transportation costs to monitor for recurring endometrial cancer, and the financial strain of making that payment has forced her to “forego non-essential expenses such as fresh food, although she wishes she could eat healthily while in treatment.”

“Another huge barrier we found is racism and discrimination in the health care industry,” said Sarah Bobrow-Williams, a senior consultant with the Southern Rural Black Women’s Initiative. “There’s repeat generational experiences of racism and discrimination, people being treated poorly, and then not returning to see a doctor because of that experience.”

Some who were interviewed described their concerns related to confidentiality in the report, claiming that the medical staff working in some of the public health clinics will discuss their medical conditions with other people. One said a physician spoke so loudly when he told her that she had venereal disease that other patients and staff could hear and was embarrassed when leaving the room. Others complained of getting treated as low-class citizens.

Low vaccination rates

The report also stated that many women don’t have access to medical information that could either prevent or treat cervical cancer, particularly with the HPV vaccine. One medical provider was quoted as saying, “not too many asking about it.”

The vaccine, introduced in 2006, has helped cut cervical cancer rates throughout the nation. According to an abstract from a study published in the journal CA in January, there was a 65% decline in cervical cancer incidence from 2012-2019, about the time the first cohort received the HPV vaccine.

But the South has lagged. According to the Kaiser Family Foundation, about 47% of adolescents in Alabama were up to date on their HPV vaccinations in 2019, compared to 54% nationwide. The rates in Georgia are similar. The rates are worse in Mississippi, with about 30.5% of adolescents currently on their vaccinations, as well as Tennessee, with 43% of adolescents up to date.

Advocates are trying to increase cervical cancer awareness throughout the state. The initiative from the Human Rights Watch and Southern Rural Black Women’s Initiative for Economic and Social Justice has recruited six women from the Black Belt region, tasking them with reaching out to their communities to explain the disease, highlight the risks, and provide information about preventative measures they can take and potential treatment options.

“They are really the ones who are out there in their communities, sharing information on cancer prevention with women, with young people, with their community members, to share information about what our research has found is not often available in rural communities and really connecting them to resources,” Daniel said.

Black Belt residents were selected because they are seen as the most credible people that their communities would trust.

Finklea and Dial both have roots in the region. Finklea was born in Tuskegee and lives in Wilcox County. She has been a part of the Southern Rural Black Women’s Initiative for Economic and Social Justice since 2011, when the organization helped her after she lost her home and her marriage ended.

“I was at a point in life when I needed to do something to help others because they helped me,” Finklea said of the Initiative. “And I didn’t mind passing it on, helping others.”

Dial, a longtime Marengo County resident, works in education and does social work. She is currently the county coordinator for Alabama Cooperative Extension.

“I am an advocate for foster care children, and an advocate for health care,” Dial said. “I do a lot of mission work, try to be a part of everything that is going on that is going to try and enhance the quality of life for people. That is one of the reasons that I liked the idea of becoming an advocate for cervical cancer work and the human papillomavirus vaccine.”

The advocates try to drive home a couple of points when they meet with people. They provide information about cervical cancer and encourage women to get screened for the illness. They also encourage parents to get their children vaccinated.

“I told her, she has a 13-year-old and a 16-year-old, ‘they need to get vaccinated right away,’ because it is preventable,” Finklea said to a mother about the vaccine that is available.

They have also written editorials in local, state and national outlets, and lobbied legislators.

Advocates were working to request legislators to increase funding for the Alabama Breast and Cervical Cancer Early Detection Program and Medicaid expansion. ADPH currently gets $600,000 a year from the state General Fund for breast and cervical cancer screening. Advocates requested $1 million from the General Fund for the program that provides cervical cancer and follow up screenings for low-income, underinsured, and uninsured individuals in the state.

Expanding Medicaid would have a positive impact in terms of outcomes for people who have the illness.

“We are not seeing these same disparities in the states that have expanded Medicaid,” Adams said. “We don’t see them in Ohio. The disparities are there but they are not as significant.”

Expanding the program would not only provide access to more low-income Alabama residents, but it could also help alleviate the physician shortage in the state.

“Closing the coverage gap is the number one thing,” Adams said. “This matters for mothers and children. When a mom or a dad has health insurance, they are more likely to have their children on health insurance.”

There are about 300,000 people in Alabama without health insurance because of the coverage gap that expanding Medicaid could help to address.

The Human Rights Watch report states that it could help stabilize the health care system in Alabama. The states that have increased access to Medicaid have seen increased access to care and reduction in health care access disparities compared to the states that have not expanded access.

The report also states that people living in rural areas have seen some of the most significant benefits, increasing access and reducing the uninsured rate. The additional patients would offer an additional revenue source for medical providers and hospitals.

“Your rates of uncompensated care in the Black Belt and rural communities throughout Alabama are significant and cumbersome,” Adams said. “Doctors are not going to move to those counties to never get paid because people don’t have health insurance as a revenue source.”

Simultaneously, White, along with the state’s public health department and several other partners were working to increase awareness for measures that help prevent cervical cancer throughout the state.

Along with that, the state launched a statewide plan to eliminate cervical cancer as a public health problem in Alabama. That plan includes education and awareness campaigns featuring cervical cancer survivors telling their stories about the disease.

It also promotes access to HPV vaccination, cervical cancer screening, and follow-up to abnormal cervical cancer screening results and treatment.

The plan involves building partnerships with local churches along with police and fire departments. There is also involvement among nonprofit and civic organizations, academic centers, and school systems for cervical cancer prevention and control.  This includes HPV vaccination, cervical cancer screening, and follow-up to abnormal cervical cancer screening results and treatment.

The state public health department provides cervical cancer screening and follow-up for those who present abnormal results for low-income individuals, people who are uninsured or underinsured.

The agency has also trained nurse practitioners to provide follow-up abnormal cervical cancer screening results in the same clinics where women are screened. The state’s public health department offers the HPV vaccine for children between 9-18 years old who are uninsured.

The goal of the plan is to have 90% of children in Alabama between 9-12 years old and 85% of Alabama children ages 13-17 years old be vaccinated with their first dose. It also states that 80% of children get their recommended dose completion which are two doses for children between 9 and 14 and three doses for older teens by 2033.

It also set a goal to have 60% of adults between 18 and 26 get their recommended HPV vaccination dose completion by 2033.

Th plan calls for 90% of women between the ages of 21 and 65 to be up to date with the cervical cancer screening, and that 90% follow-up with the screenings and treatment among women who have abnormal cervical cancer screening results.

Overall, the advocates believe the publicity campaigns have helped raise the public’s awareness of the illness. Finklea spoke to a woman who was 92 years old who had never been screened for cervical cancer. She had four children, all born at home, and she had never had a pap smear.

“’Well, we are going to go get one,’” Finklea told her. “’I need to take you.’”

Her son ended up taking her. She was cleared for cervical cancer.

But the screening showed that she had breast cancer. She never had a mammogram.

Updated at 2:12 p.m. to correct Jane Adams’ title. She is government relations director for the Alabama Cancer Society Cancer Action Network. An earlier version of this story called it the Alabama Cancer Action Network.