‘Race and ZIP codes should not be the biggest determinant of how long a person will live’
As a child, Shonette Barbee often complained about her “heart hurting.”
Tests were run to no avail.
Over the next 30 or so years, one doctor said she might have a heart murmur, while others attributed her worsening weakness to stress because she was pregnant or later because she was a working mother with small children.
Barbee, now 35, suspected they did not take her concerns seriously because she was Black. She was particularly disappointed that even a doctor who also was Black did not seem to fully hear her.
“Ask why”: Nonprofit charts Jacksonville’s past of racial inequity, seeks solutions that stick
More: United Way of Northeast Florida receives $1M to help community address racial disparities
The Jacksonville woman did not challenge their authority because of fear and her failure to prioritize her own health, which she said is typical of mothers in the Black community.
Inaction by her doctors’ and herself almost killed her.
Nonprofit seeking solutions to health disparities
In Duval County, Black residents have the most severe health risk factors, health outcomes and shortest life expectancy of all population groups, according to a new report on health disparities from 904Ward, a community organization formed five years ago to advance racial equity in Jacksonville. The report was the third in an eight-part series.
“Health care disparities, though improved, are still significant in a city that has the worst health standing of cities in the state in a state that ranks in the bottom half of state health rankings,” said Kimberly Allen, CEO of 904Ward. “While we have seen improvements over the past 20 years, we still have diseases that are more prevalent in Black communities and have a more severe impact in them. Race and ZIP Codes should not be the biggest determinant of how long a person will live.”
And yet, in Duval:
• The 2020 life expectancy for Blacks is age 72, compared to 78 for whites.
• Black and white women are just as likely to die from cancer, but Black women receive fewer cancer diagnoses. Black men are twice as likely to be diagnosed with and die from cancer than white men.
• Blacks are almost three times more likely to be hospitalized for and die from asthma than whites.
Jacksonville air quality: Once among Florida’s worst, Jacksonville graded B for air quality by Lung Association
Guest column: Healthy Start helps reduce infant mortality
• Although infant mortality rates in Duval County dropped from 9.5 deaths per 1,000 live births to 7.9 deaths in 2019, Black infants are almost three times more likely to die before their first birthday than white infants. Premature births and low birth weight are the leading causes of death.
• Black residents have disproportionately higher rates for all bacterial sexually transmitted diseases and HIV. As of 2018, Jacksonville had the 45th highest rate of sexually transmitted diseases in the nation and the second highest in Florida.
The top-five leading causes of death — across racial and ethnic groups — are cancer, heart diseases, unintentional injury, stroke and chronic lower respiratory diseases, according to the report. With the exception of unintentional injury, Blacks are more likely to die from each of these conditions than any other group in Duval.
Health disparities have deep roots and are difficult to eradicate, said Gerardo Colon-Otero, medical director and site lead for the Mayo Clinic campus of the Center for Health Equity and Community Engagement Research.
“We have been aware of the presence of health disparities in our country for the last 50 years,” he said. “They were first described as soon as we were able to collect race and ethnicity data as part of cancer mortality registry data back in the 1970s.”
In the Jacksonville area there are “multiple health disparities,” he said, citing of particular concern infant mortality and cancer outcomes among African Americans.
“The causes … are multiple and classified as social, behavioral, environmental, cultural, psychological and biological,” Colon-Otero said.
They can range from poverty-level income and lack of health insurance — more likely the case for African American and Latin families — to smoking, unhealthy eating habits and extended families sharing a home.
Also, there are genetic factors that play a significant role in multiple cancers and coronary artery diseases, he said.
“As an individual, becoming aware of these factors and taking preventive steps to eliminate them or steps to prevent the diseases associated with these factors can have profound beneficial effects,” he said.
In north St. Louis, calls for racial health equity
As data shows that black Americans are disproportionately affected by COVID-19, communities are pointing to disparities in health care while trying to fight the virus’ spread. In north St. Louis, mistrust of the health system also runs deep. (April 17)
But community organizations also taking a long-term interest — such as 904Ward — is key.
“I was very glad to see such an important and significant effort in our community to increase awareness on this problem,” Colon-Otero said. “The solutions … will require a concerted effort from multiple members of our community. In Jacksonville we are truly fortunate to have compassionate top-notch health systems that provide excellent care to our community and who are collaborating to find solutions to the health disparities that have been identified.”
Among those collaborators are Community Health Outreach, which provides free medical and dental care and other services to low-income, uninsured Duval County patients, and the United Way of Northeast Florida.
Meredith Smith, executive director of Community Health Outreach, said the findings of the 904Ward report came as no surprise. About 32 percent of the clinic’s patients are African American, as are 40 percent of the staff and 20 percent of the board, she said.
More: Jacksonville nonprofits hope to connect more uninsured residents to primary care
The nonprofit, which runs a clinic on the Westside, “has long seen this trend and sought to address it in Jacksonville, but it is still shocking to see the glaring disparity quantified,” she said.
“Community Health Outreach takes seriously the glaring gaps in infant and adult mortality, cancer diagnosis and sexually transmitted disease rates among our Black brothers and sisters,” she said. “Our staff, service partners and donors have committed to training, programmatic changes and policies that will help close these gaps among low- and no-income uninsured residents in an area ranked high need for health and food security.”
Michelle Braun, president and CEO of the area United Way, said communitywide action will be required.
“We are, unfortunately, not surprised by the report findings,” she said. “However, we are encouraged knowing 904Ward, our team at United Way and so many other partners and advocates in our community are taking a stand — and taking action — on racial equity and social justice issues so we can collectively ensure everyone who calls Northeast Florida home is able to reach their full potential.”
From misdiagnosis to transplant
On Feb. 25 Barbee received a heart transplant at the Mayo Clinic in Jacksonville. The surgery followed decades of misdiagnoses.
Doctors had told her she was “too young to have a heart problem … I was working too much, stress,” she said. “I’ve always been a workaholic. I’ve been working since I was 14. … But something was going on.”
She continued to experience weakness and fainting episodes. She lost three jobs because of failed physicals. Finally in 2010 her mother’s physician ordered a battery of tests that showed a side of her heart was barely functioning.
The diagnosis was idiopathic cardiomyopathy, which is heart disease without an exact cause. A defibrillator was implanted to help maintain a normal heartbeat. But it was not the final solution: a transplant.
In 2014 she started seeing a Mayo Clinic doctor, but she kept putting off further action. She had all sorts of reasons — she and her husband were both busy working, she was in school, she had small children to raise — none of which put her first.
“That’s something Black women do. When we don’t feel well, we continue to put it off until we can’t take it anymore,” she said. “We have to be that backbone of everything.”
When her children — now 14, 12 and 11 — urged her on, she relented. Her oldest child, a student at Darnell-Cookman School of the Medical Arts, said, “Mom, I need you to do this.”
By early May, Barbee said she was “feeling 90 to 95 percent.” She was undecided about whether to return to work or return to school to pursue a new career, maybe in banking.
“I’ve been going back and forth,” she said. “I’m kind of scared.”
Residents uninformed about own health
Health education is key to improving health outcomes for the Black community and reversing decades of disparity, according to the 904Ward. That means addressing a host of issues, from helping patients like Barbee assertively navigate their health care to teaching communities about proper nutrition and healthy eating.
“Preventative health education has to become more frequent in our most impacted communities and be accessible to those with varying educational levels and English proficiency,” according to the report.
“Many residents, especially those in the communities with the poorest health outcomes, are not informed about proper nutrition, correct use of medication, warning signs or adequate sex education. Additionally, many residents lack the knowledge of how to navigate the health care system effectively or the services they can receive within the system,” according to the report.
Other issues 904Ward recommended be addressed:
• The accessibility of health services and healthy food options, especially for people with limited or no transportation, “creates a significant barrier to receiving quality and regular care … [that] disproportionately impacts low-income, elderly and disabled residents, who are often the most in need of the care.”
• Another barrier is the affordability of health care services and health care insurance, particularly for people of color, elderly residents, recent immigrants and undocumented people.
‘Empower the community’: Nonprofit grocer opens in Northwest Jacksonville food desert
Uninsured or underinsured? Stimulus funding has boosted affordability of Affordable Care Act
The report asked: “Knowing these limitations exist, how can institutions of health become more transparent, accessible, affordable and meaningfully connected to the communities who need them most? How can our city be retrofitted, particularly in our urban core … to be more conducive to better health?”
One promising program that could provide a pathway is Baptist Heath’s partnership with Blue Zones. The company promotes community well-being initiatives designed to help residents live longer, with lower rates of chronic diseases and a higher quality of life.
A recently unveiled Blue Zones community assessment of Jacksonville made a host of recommendations that, through community collaboration and resident buy-in, could improve health and productivity and reduce healthcare costs, among other things. The Times-Union plans a future story on the recommendations.
“How can we grab hold of efforts like this and other community partnerships with trusted institutions such as places of worship, community and civic groups, fraternities and sororities and local nonprofits to help spread this knowledge and build reciprocal trust between the community and the system of healthcare?” said Allen, 904Ward’s CEO.
“Finally, there must be an honest effort and willingness to address systemic racism in how patients are perceived, counseled and treated,” she said. “If we radically and intentionally address the factors that contribute to disparities in health outcomes, we can move into a time where they no longer exist.”
Allen said 904Ward will work with its diverse and expanding base of volunteers and community partners to prioritize and address the concerns.
In 2020, 904Ward announced plans to expand its efforts to end racism in the community. One of those efforts was compiling 75 years of research producing an eight-part series of progress reports, “Race in Retrospect.” The introductory report, released Feb. 12, was followed by reports on progress in education and then health.
Subsequent reports will focus on housing, justice and the legal system, employment, media and politics and civic engagement.
Beth Reese Cravey: [email protected]jacksonville.com, (904) 359-4109
TO LEARN MORE
For more information about 904Ward, go to 904ward.org. To read the introductory, education and health disparity reports, go to 904ward.org/race-in-retrospect.