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INTERACTIVE: Mortality rates for breast cancer reflect health disparities

About 7,000 women in Virginia are expected to be diagnosed with breast cancer this year. Certain women — including African Americans and rural residents — are more likely than others to die from the disease. That may be because they are diagnosed with breast cancer at an advanced stage when the disease is harder to treat.

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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.

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The Capital News Service is a flagship program of VCU’s Richard T. Robertson School of Media and Culture. In the program, journalism students cover news in Richmond and across Virginia and distribute their stories, photos, and other content to more than 100 newspapers, television and radio stations, and news websites.

People

More comfortable, accessible GRTC bus stops coming, transit authority says

At least half of all GRTC bus stops in the City of Richmond, Chesterfield County, and Henrico County will soon have a more comfortable, accessible, and dignified place to wait for a ride.

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At least half of all GRTC bus stops in the City of Richmond, Chesterfield County, and Henrico County will soon have a more comfortable, accessible, and dignified place to wait for a ride.

Only five percent of GRTC’s 1,609 active local stops have a shelter, and 21 percent have seating. Less than half of those stops predate the Americans with Disabilities Act and are not compliant. And most stops lacking adequate infrastructure are in low-income areas throughout Central Virginia.

Under a plan approved by the transit system’s board of directors, GRTC will install 160 shelters and 225 benches over five years. Work is expected to begin in the summer of 2023. GRTC also will coordinate with jurisdictions to improve ADA compliance at stops to further the agency’s push to be more inclusive.

“This is one of several GRTC strategic initiatives planned that aim to address the various impediments to transit access and ultimately inequities,” said Director of Planning and Scheduling Sam Sink. “GRTC champions social and economic mobility by prioritizing connecting people to essential human services and needs. With proper operational and capital investment, transit is a factor that can improve overall quality of life.”

The Essential Transit Infrastructure (ETI) plan will cost between $11 million and $28.6 million, and be funded through a combination of local, state, and federal grants.

GRTC will use a scoring system that considers usage and equity to determine which stops qualify for improvements. Anyone may request a bench or shelter via email at [email protected], through the GRTC website, or by calling 804-358-4782.

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Crime

New VCU study directly connects derelict properties to risk of violence in Richmond neighborhoods

Negligent landlords — those who allow their properties to become dilapidated despite having tenants — are a significant predictor of violence in Richmond neighborhoods, even more than personal property tax delinquency, population density, income levels and other factors, according to a new study by researchers at Virginia Commonwealth University.

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By Brian McNeill, VCU News

Negligent landlords — those who allow their properties to become dilapidated despite having tenants — are a significant predictor of violence in Richmond neighborhoods, even more than personal property tax delinquency, population density, income levels and other factors, according to a new study by researchers at Virginia Commonwealth University.

“Negligent landlords contribute significantly to violence in Richmond neighborhoods via the environment,” said lead author Samuel West, Ph.D., an alum of the Department of Psychology in the College of Humanities and Sciences and an assistant professor of psychology at Virginia State University. “This impact was above and beyond the impact of those who live in these neighborhoods in terms of the state of their respective properties.”

West and other researchers at VCU collected data on violence events, tax delinquency of company-owned properties (such as rental homes and apartments), tax delinquency of personal properties, population density, race, income, food stamps and alcohol outlets for each of Richmond’s 148 neighborhoods.

Tax delinquency of company-owned properties was the only variable that predicted violence in all but four of Richmond’s 148 neighborhoods.

The researchers replicated the analysis using violence data for a different time period and found the same result.

“The key finding here was that the company delinquency was a stronger or more important correlate of violence than personal delinquency,” said West, who initiated the project while serving as a postdoctoral researcher with the Injury and Violence Prevention Program at VCU Health.

The study, “Comparing Forms of Neighborhood Instability as Predictors of Violence in Richmond, VA,” was published in the peer-reviewed journal PLOS One.

In addition to West, the study was authored by Diane L. Bishop, an instructor in the Division of Epidemiology in the Department of Family Medicine and Population Health in the School of Medicine; Derek Chapman, Ph.D., interim director for research at the VCU Center on Society and Health and an assistant professor in the Division of Epidemiology in the Department of Family Medicine and Population Health; and Nicholas Thomson, Ph.D., director of research for the Injury and Violence Prevention Program at VCU Health Trauma Center.

The findings are consistent with previous research that suggests “slumlord buyout programs” are tied to reduced violence in cities, West said. For example, a program in Philadelphia purchased neglected properties in the East Liberty neighborhood and provided them to community residents to renovate and rehabilitate. It led to a decline in violence over a sustained period of time, West said.

“Although we acknowledge this would be a massive effort, the data do support the use of such programs to curb violence among other social difficulties,” West said. “I believe that Richmond is a perfect place to attempt a program like this at a larger scale than was done in Philadelphia (i.e., a single neighborhood).”

There are no laws in Virginia protecting tenants from eviction if their landlord loses their rental property to state property auction, West said. In Richmond, along with most medium to large cities, delinquent properties are seized and auctioned off to recoup costs, he said.

“When this happens, the winners of the auction are typically given carte blanche to decide what to do with the tenants as they no longer have a valid contractual agreement,” he said. “This aspect greatly endangers the residential stability of our neighborhoods.”

West was inspired to explore this topic through his observation of dilapidated buildings next to new construction in Richmond.

“Given the preponderance of real estate development and the aggressive housing market in Richmond, it seemed important to better understand how these seemingly inane facets of our society may impact some of our deepest problems,” he said.

The researchers hope their findings will contribute to a growing perspective by scholars that research should break away from the traditional view that members of a community hold the majority of the blame for violence that occurs there.

“Our work, along with other recent research, emphasizes that we need to be examining and addressing the impacts of forces from outside high-violence communities that carry such major consequences,” West said.

He added, however, that individual autonomy might also be considered a key factor.

“Social psychologists place a major emphasis on autonomy as a psychological need. In the case of a negligent landlord, the tenant(s) may live in a constant state of highly salient violations of their own autonomy which may further undermine attempts to improve the conditions of their own communities,” he said. “As evinced by the East Liberty project from Philadelphia, when this autonomy is restored, it is used in a productive fashion such that it improves the quality of life and safety of all in their communities through restoring their collective efficacy.”

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History

New book on Lewis Ginter is a fictionalized take on his real-world love affair with a younger man

Ginter’s naming of a street that intersects Hermitage Road in the Lakeside neighborhood “Pope” was perhaps the only visible sign of his affection during his living years.

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Lewis Ginter has often been referenced as “the greatest Richmonder of all time.” That attribution speaks to the man’s accomplishments, having built a thriving Tobacco business after the Civil War and set the Virginia Economy on a path toward prosperity and acclaim for decades to come. Among his ‘firsts’ were the introduction of Trading Cards, the employment of women, and a cooperative mindset for local suppliers to reduce costs for both parties.

His other achievements included several infrastructure projects that created neighborhoods, parks, and churches. He was the initial investor in what became Virginia Power, and his trolley system was the first continually operating public transport of its kind in North America. He financed and built the only five-star hotel in Richmond: The Jefferson. He named it for his childhood idol.

Despite all of his successes, he refused to have any statues of himself and would not allow his name to be used for any of his projects. During his lifetime, there were no streets, buildings, neighborhoods, or parks named for him. His one tribute was the naming of a street that intersects Hermitage Road in the Lakeside neighborhood: Pope.

This simple gesture is the only public indication that Lewis was in fact head over heels in love with a younger man. After having met John Pope in Manhattan, Lewis expended a lot of effort to find the young man and convince the teenager’s family to allow John a chance of success in Richmond. From the time they connected as colleagues, they were also beginning a decades-long romantic ‘friendship’ that we now understand as love.

A new local book series is hoping to shed light on some of his more personal details. Ginter’s Pope, local author John Musgrove’s first novel, is a detailed accounting of their relationship. While it is Historical Fiction, the saga is based on the true-life events that made their love story a touching, heartbreaking tale of two men that loved one another in a time when there were no words for such a relationship. This is book one in the Reticent Richmond series.

This book is the first in a planned series of four. The next volume, Mary’s Grace will expand upon Grace Arents (Ginter’s Niece and heir) and her girlfriend, Mary Garland Smith. Book three, Garland’s Legacy details the forty years of patronage that Garland lavished on Richmond. The last book, George’s Race, tells the story of George Arents, a racecar driver that left his wife for a man that stole his heart on the racetrack. All are based on real-life people, events, and sagas from the same family.

The author, John Musgrove, is an information security analyst at the Federal Reserve Bank of Richmond. He has graduated five times from VCU, holding a BS and MS in Information Systems, and Post Baccalaureate Certificates in Instructional Technology, Nonprofit Management, and Geospatial Information Systems. He served as a Navy Corpsman, supporting the Marine Corps and did a tour of duty for Desert Storm. 

Ginter’s Pope is available through most retailers in paperback, eBook, and audiobook formats. Click here to learn more.

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