By Rosemarie O’Connor
“Oh my God, I’m going to die.”
On March 19, 2018, Margrietta Nickens was diagnosed with stage 2 breast cancer. Over the next five months, she had six cycles of chemo. After that, she had surgery to remove the cancerous tissue from her breast.
“When you’re diagnosed with something as devastating as cancer,” Nickens said, “you look at it as a death sentence.”
Nickens is one of thousands of people diagnosed with cancer in Virginia. The American Cancer Societyestimates there will be over 45,000 new cases of cancer diagnosed in the commonwealth in 2019. That number includes 7,000 cases of breast cancer.
Cancer was the leading cause of death in Virginia in 2017, with over 15,000 people perishing from the disease, according to the U.S. Centers for Disease Control and Prevention. One of every four deaths in the United States is due to cancer.
“My first emotion was panic and fear,” Nickens said. “From fear, I got very angry.”
She asked herself over and over again: “Why me?”
Nickens had to stop working after her diagnosis. “The chemo makes me very sick,” she said. “Some days I can’t even get out of bed.” Nickens lost her hair during chemotherapy and suffers from nausea and fatigue.
At her first chemo appointment, she met a woman with the same cancer diagnosis as her and the same care team. She said they have kept in touch since then and even have the same treatment appointments.
“She calls me, and she’s in tears sometimes,” Nickens said. “The first thing we learned to do is just listen to each other — just be quiet and listen.”
She and her friend find solace in their faith and try to remain strong for their families. Nickens has one daughter still in college and three adult sons who all live in the Richmond area.
The cost of cancer: often, your life savings
Cancer isn’t just a health problem — it can be a financial catastrophe.
The Agency for Healthcare research and Quality estimates that the direct medical costs for cancer in the U.S. in 2015 totaled $80.2 billion.
According to a 2018 report from the American Cancer Society, “uninsured patients and those from many ethnic minority groups are substantially more likely to be diagnosed with cancer at a later stage, when treatment can be more extensive, costlier, and less successful.”
After Nickens’ cancer diagnosis, she was automatically enrolled in Medicaid, the government-funded health care program for low-income individuals.
This year, Nickens was dropped from Medicaid and enrolled in Medicare because she was placed on disability.
This has caused complications for Nickens because certain cancer treatment costs that were covered under Medicaid are not covered under Medicare.
For example, Nickens loves her care team that Medicaid was paying for at Bon Secours Health System. That service isn’t covered by Medicare. Nickens has been fighting to get back on Medicaid so she can return to her original care team.
Nickens said Medicare does not cover all of her medications now. One medication costs her about $1,500 every few months.
As new drugs and more technologically advanced treatments come on the market, some patients are choosing to delay their care or fill only part of their prescription.
A 2013 study from The Oncologist, a medical journal, showed that 20% of patients surveyed took less than the prescribed amount of their medication to save money — and 24% avoided filling prescriptions altogether.
The Journal of Oncology found that between 1995 and 2009, patients who filed for bankruptcy after their diagnosis were more likely to be younger, female and nonwhite.
A study from The American Journal of Medicine showed that around 42% of patients surveyed depleted their entire life savings within two years of diagnosis.
For patients with breast cancer, the cost of chemotherapy can range from $10,000-$100,000 depending on the drugs, method and number of treatments, according to HealthCostHelper.com.
Nickens is an African American woman and worked in medical billing before her diagnosis, so she has experience dealing with the insurance system. Still, she said she feels like the stress from dealing with insurance has negatively impacted her recovery.
Nickens said she sympathizes with others who don’t have experience, who have to navigate the insurance system while undergoing treatment.
She wishes the case managers she speaks to and others would show more compassion. She wants to feel like “more than a piece of paper with a person’s name on it.”
“I feel like my life is in someone else’s hands,” Nickens said of her diagnosis.
Disparities among who survives
African Americans and whites are diagnosed with cancer at about the same rates, according to the CDC.(Asian Americans and Native Americans, on the other hand, are less likely to get cancer, the data shows.)
But there are racial disparities in who dies of cancer. Nationally, African Americans have a higher rate of mortality.
For example, of every 100,000 African Americans, 181 died of cancer in 2015, according to the CDC. For every 100,000 white people, there were 159 cancer deaths.
The CDC has reported that African American women are more likely to die from breast cancer, with a rate of nearly 28 deaths per 100,000 compared to about 20 per 100,000 population for white women.
The CDC says that differences in “genetics, hormones, environmental exposures, and other factors” can lead to differences in risk among different groups of people.
The American Cancer Society states that much of the suffering and death from cancer could be prevented by more systematic efforts to reduce tobacco use, improve diet and physical activity, and expand the use of established screening tests.
According to a 2018 report from the American Association for Cancer Research, women who have private health insurance are significantly more likely to be up to date with breast cancer screening than women who are uninsured.
African American women are 75% more likely to be diagnosed with breast cancer at an advanced stage than non-Hispanic white women, the association reported. Hispanic women are about 69% more likely than non-Hispanic white women to receive a late diagnosis.
The survival rate for breast cancer depends heavily on the stage at diagnosis. When found early, the survival rate is much higher than later stage cancers.
The statewide mortality rate for breast cancer is 26 per 100,000 people. But, in some areas, it’s over 40 per 100,000 according to aggregate statistics for 2013-17 from CDC WONDER, a federal database on causes of death.
Five communities, mostly in rural areas, had a rate of about 50 or more breast cancer deaths per 100,000 women. Martinsville was the highest, with a death rate of 68 per 100,000. The other communities were Colonial Heights, Bristol and Westmoreland and Page counties.
The lowest rates were concentrated in more affluent communities, like Loudoun, Arlington, Prince William and Fairfax counties — all with a rate below 20 breast cancer deaths per 100,000 women.
In general, African American women and women in rural areas saw the highest death rates for breast cancer.
African American women in Suffolk, a city in the Hampton Roads area, had a rate of more than 46 breast cancer deaths per 100,000 population. That was more than double the rate for white women in Suffolk.
The numbers were similar in Richmond, where African American women had a death rate of almost 39 per 100,000 population compared with just 17 per 100,000 for white women.
Those large differences in death rates are an example of the health disparities impacting vulnerable populations across America.
The CDC defines health disparities as “preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations.” These disparities are often due to sex, race, education and geography among other factors.
‘Our environment shapes our choices’
Dr. Steven Woolf, director emeritus and senior advisor at the Virginia Commonwealth University Center on Society and Health, said there are common misconceptions around health disparities.
“People think that just because you have a hospital in the area, it’ll make things better — or access to doctors, hospitals, pills saves lives. That certainly helps, but it’s not the determining factor,” said Woolf, one of the nation’s leading experts on the subject of health disparities.
“People assume it’s all a matter of personal choice and responsibility,” Woolf said. “But people can only make the choices they have. What they don’t appreciate is how much our environment shapes our choices,”
For example, he said, “I could say you need to get screen for colon cancer. But that doesn’t help if you live in a rural county and it has no gastroenterologist.”
This lack of access is true for rural Virginia counties and more urban centers where patients may not have access to transportation for their appointments.
“Right now, we are in a period where the most cutting-edge and impactful changes are happening at the local level. Various communities around the country are doing innovative work; others are less progressive,” Woolf said.
‘Life affects health’
Dr. Christine Booker is a professor of health disparities at VCU. She began her career as a nurse and soon realized she could do more to serve the community from the perspective of research and policy.
Booker looks at health from a holistic perspective.
“Health is not just things that are happening to people,” she said. “A lot of the time, their life is affecting their health.”
She explained that if a patient is unable to exercise or make healthier diet choices because of their environment, a health provider may see that as “non-compliance.”
“We’re finding ways to increase awareness for the health community,” she said, “to better understand the communities they are providing care to so they can recommend treatment that is doable.”
Booker said people living in marginalized communities may have higher rates of tobacco and alcohol use to deal with the stress in their environment.
Some people who have lived their whole life in poverty may not be motivated to live longer, Booker said.
However, some gaps in health disparities are closing.
“I think over the next several decades, we’re really going to see a change because the health system can’t continue to just focus on treatment,” Booker said.
“That’s what made me change my focus to prevention — because I realized that if we can stop some of these things before they happen, it would be a lot more successful.”
Last August, Margrietta Nickens “rang the bell” — a ritual done in hospitals across the country to mark the successful completion of chemotherapy.
Nickens is completing her last two cycles of maintenance chemotherapy. She said she still has days where she feels fatigued and nauseated but is feeling stronger than before. Her last day of chemo will be June 14.