The double pandemic: How COVID-19 is bringing to light health inequities that have long been a problem in America
The novel coronavirus has exposed deeply rooted disparities across the healthcare system which disproportionately impact communities of color. The way to begin to pave the way for lasting change? Inclusive innovation, community outreach and policy work—and a passion for fighting for an equitable future.
Imagine if, as of today, there were fewer recorded deaths—upward of 20,000—from COVID-19 in the United States.
This could have been a reality if Black Americans had died from the virus at the same rate as white Americans. But, nationwide, Black people have been dying from COVID-19 at around 2.1 times the rate of white people.
The disparities picture is equally troubling for Hispanic and Indigenous populations: Recent research found that Hispanic Californians between the ages of 50 and 64 have been dying of COVID-19 at more than five times the rate of white people of the same age. In New Mexico, more than half of initial positive virus cases were Native Americans, despite the fact that they represent just 11% of the state’s population.
And while the current pandemic has painted the health disparities that exist in America in sharp relief, it’s certainly not a new problem.
According to the Centers for Disease Control and Prevention (CDC), it’s long been known that Black adults under the age of 50 are twice as likely to die of heart disease as white adults. In fact, younger Black Americans now live with many health conditions that are more typically found in white Americans at older ages, such as type 2 diabetes and high blood pressure.
These staggering inequities can be traced to a constellation of systemic disadvantages, including a lack of access to affordable and quality healthcare, limited educational opportunities around healthcare and implicit biases in medical care. Put simply: This crisis isn’t going to end unless urgent action is taken to finally address these issues.
But where do you even begin?
At Johnson & Johnson, this urgent work is well past the “where do we begin” stage, with projects already underway to help address health inequities that span the company—from data scientists and clinical study leads working on COVID-19 to employees tasked with problem-solving how to better deliver care to underserved communities around the world.
With this solid groundwork in place, today the company is announcing plans to help drive even more lasting change with a commitment of $100 million over the next five years to promote health equity solutions for people of color in the U.S. by investing in programs that provide equitable healthcare for underserved communities, forging partnerships and alliances that address racial and social health determinants, and working to ensure a diverse and inclusive workforce.
“There is an urgent need to step up and take on the inequities rooted in systemic racism that threaten the health of communities of color across the United States,” says Alex Gorsky, Chairman and CEO, Johnson & Johnson. “That’s why Johnson & Johnson is focusing its efforts and committing $100 million to address racial and social injustices as the critical public health issues that they are. As the largest and most broadly based healthcare company in the world, we are uniquely positioned to convene private, public and community organizations in pursuit of this shared aspiration—and work together to make a meaningful impact through science, business, public health and philanthropy.”
With a workforce that’s over 130,000 strong and deeply passionate about advancing healthcare, change and lasting progress can be possible. Here’s a look at just how.
Delving into data to drive innovation that’s inclusive—and equitable
In the spring of 2020, when the COVID-19 pandemic began to take hold in the United States, drive-through testing sites started cropping up across the country. It seemed like an egalitarian solution to a dearth of testing and a rising case count—until you started looking at the data.
White people were being tested at much higher rates—despite the fact that COVID-19 disproportionately affects communities of color.
“If you consider the lack of access to and the cost of cars in low-income populations you start to understand the discrepancy between the solution of drive-in testing sites and the problem,” explains Kathleen Noonan, CEO of Camden Coalition of Healthcare Providers, a nonprofit working to improve care for people with complex health and social needs. “We can see in the data that there are large racial discrepancies between who wants to get tests and who can actually get tested. In state after state, this pattern recurs, with mainly white, higher-income areas getting easier access to testing, in part because so many of the sites were set up with the suburban drive-through model in mind.”
It’s something Michigan State University epidemiologist Debra Furr-Holden, Ph.D., experienced firsthand this past July, when she traveled to Baltimore for work. About six days into her trip, she began experiencing symptoms of COVID-19, such as shortness of breath and a headache.
But she found it so difficult to obtain a COVID-19 test, because she lived out of state and didn’t have a Maryland license, that she opted to skip it entirely. “I’m a Johns Hopkins-trained epidemiologist, and I couldn’t even navigate the system,” she says.
Furr-Holden, who is Black, says her experience really hit home for her how especially tough the system must be for those who are disadvantaged. “I spoke to other residents in the East Baltimore neighborhood where I stayed who also had symptoms, but couldn’t get tested because they didn’t have identification, such as a driver’s license, to prove they lived there. You’re taking an already marginalized population of color and making them even more vulnerable.”
In order to begin to address issues like this, it’s critical to understand the data by state, race and socioeconomic status so that you know whether the services that can mitigate the pandemic are reaching those who need it the most.
We know that patients respond to people who look like them, so we want to make sure we have as many Black and Brown physicians involved in clinical trials as possible.
This is why the Johnson & Johnson Foundation is supporting researchers at the Johns Hopkins Bloomberg School of Public Health, who are exploring these inequities through national surveys and data analytics with the goal of better understanding the drivers and consequences of the COVID-19 pandemic, as well as gaining insights into how interventions and policies have impacted disease burden and mortality.
This data, once analyzed, will be shared with the public, as well as with policymakers to help inform decision-making around the COVID-19 pandemic. Results will be hosted on a website.
Alain Labrique, Ph.D., an infectious disease epidemiologist at the Johns Hopkins Bloomberg School of Public Health, and his team have completed the first national survey and are preparing to launch additional ones to further analyze socioeconomic and racial differences in high-risk exposures; access to testing and care; and secondary effects of the pandemic, such as disrupted schooling and healthcare. To ensure that this work is successful, the team has created a respondent pool that mirrors the national population in terms of age, gender, race/ethnicity and income.
Another way that data can help drive better health outcomes across populations is through its application to clinical trials to help better diversify study participant pools.
For example, significantly fewer participants in clinical trials for cardiovascular disease are Black than non-Black—yet they are a group that’s at higher risk of developing the disease than the average population.
This is one reason why the Janssen Pharmaceutical Companies of Johnson & Johnson has committed to increasing enrollment of underserved and underrepresented populations in its clinical trials.
According to Staci Hargraves, Executive Sponsor of the Diversity and Inclusion in Clinical Trials Strategy, Janssen Research & Development, part of the Janssen Pharmaceutical Companies of Johnson & Johnson, that work has to start with better education. “Medical research has a long, troubled racial history,” Hargraves explains. “One example is the Tusgekee study, which has a negative history with how it treated Black men with syphilis. There’s also the case of Henrietta Lacks, a Black woman whose cancer cells were used for decades without her permission.”
As a result, says Hargraves, many in the Black community are distrustful of medical researchers, including when it comes to clinical trials for potential COVID-19 vaccines.
So Hargraves’ team is proactively identifying cities with underserved and underrepresented populations—including Baltimore, Philadelphia and Washington, D.C.—and creating an education-based community outreach program to better inform the public about clinical trials and start to build trust within underrepresented communities. The team is also partnering with other key departments within the company to look at ways to help make it easier for underrepresented individuals to participate.
To further help diversify clinical trials from within, Johnson & Johnson is also sponsoring a multiyear educational grant for Morehouse School of Medicine in Atlanta, Georgia, to encourage, support and grow community physicians into clinical researchers. “We know that patients respond to people who look like them, so we want to make sure we have as many Black and Brown physicians involved in clinical trials as possible,” Hargraves explains.
“We want to go where the people are": paving the way for better access to COVID-19 testing and services
In early March, Cecilia Corral, Vice President of Product for CareMessage, a nonprofit that partners with healthcare organizations to deliver health information to underserved communities via text message, began to notice an uptick in demand from the organization’s partner clinics, which were sending out text messages about how to identify COVID-19 symptoms, where to access testing and more.
“We realized there was an urgent need for immediate communication about COVID-19, given the disproportionate infection and death rates we were seeing among Black and Brown people,” Corral says. “Our goal is to ensure that all people, regardless of income or background, have equitable health outcomes.”
To help bolster these efforts, Johnson & Johnson helped provide funding for CareMessage’s Project Equity, which provides COVID-19-related outreach to more than 105,000 Black, Hispanic and Native American patients in both urban and rural areas. More than 175,000 COVID-19-related text messages, which have proven to be the most effective method of engaging low-income patients, have been sent to people in 23 states to date.
Amber Price, a health advocate in Appleton, Wisconsin, saw the benefits of CareMessage play out when the homeless shelter that she works at had to temporarily close this spring due to COVID-19.
To check in on residents that had to move out due to the closure, she used CareMessage to send texts—and received an overwhelming response. “I used the service to send a brief text asking people to reply ‘yes’ if they had health concerns and needed an appointment at our partner health center,” she says. “Over a dozen people responded that they had health worries, and a few others just texted back a ‘hello.’ They were so grateful for the connection.”
One individual wrote back that he had moved to another state and was struggling to be able to afford his prescription medications during the pandemic. Price was able to connect him with several assistance programs to help him get his medications. “He would never have thought to call us for help otherwise, since he was in another state,” she says.
Despite COVID-19 being front-page news every day, many people still don’t have ready access to testing or information. So we decided to identify high-density urban neighborhoods that have a high percentage of Black or Hispanic individuals to bring mobile health units to those areas to provide testing.
Now, Price uses CareMessage regularly to remind former residents to stay on top of needed health screenings, especially those with chronic health conditions that could exacerbate COVID-19, such as type 2 diabetes and high blood pressure.
Community-specific outreach efforts like these are critical to helping tackle the disparity crisis. As Lauren Moore, Vice President, Global Community Impact, Johnson & Johnson, explains it, “When COVID-19 hit, and we started seeing the data around the disproportionate impact of the virus, we knew we needed to do something more to help in the communities most affected.”
Johnson & Johnson entered into a partnership with Penn Medicine’s Center for Community Health Workers to provide virtual health worker support—from helping battle eviction notices to reinforcing COVID-19 prevention strategies—to underserved patients in Philadelphia who are already at risk for COVID-19-related complications due to underlying medical conditions. Thanks to this commitment, the center will be able to double the number of people it can serve during the pandemic.
The company has additionally made a pledge to the United Way COVID-19 Relief Fund, which provides support to over 40 community health organizations in Black communities in six cities—Chicago, Detroit, New Orleans, Atlanta, Los Angeles and New York City—by helping communities access accurate information about the virus, as well as services like food and shelter.
There’s also the issue of lack of access to adequate testing within such communities. In New York City, for example, a study published in the American Journal of Preventive Medicine found that the number of tests performed in March increased with the percentage of white residents in a given ZIP code—in other words, the more white residents there were in a given neighborhood, the more COVID-19 testing was being done. But the same was not true for Hispanic residents. A National Public Radio investigation had a similar finding: In four out of six of the largest cities in Texas, testing sites were disproportionately located in predominately white neighborhoods.
“One of the dynamics you consistently see as you study the data and work with the community is that, despite COVID-19 being front-page news every day, many people still don’t have ready access to testing or information,” Moore says. “So we decided to identify high-density urban neighborhoods that have a high percentage of Black or Hispanic individuals to bring mobile health units to those areas to provide testing. We want to go where the people are, versus us assuming they automatically are able to access testing themselves.”
To that end, Johnson & Johnson is collaborating with the Henry Ford Health System in Detroit and LCMC Health in New Orleans to support increased COVID-19 testing and education in Black and Hispanic communities with significant COVID-19 disease burden through existing mobile health clinic services.
“Often location and a lack of trust in traditional medical institutions present barriers to healthcare access. Mobile healthcare systems can provide direct delivery of therapeutic and diagnostic interventions to marginalized communities, help overcome barriers to care, and serve as a necessary link between clinical and community healthcare settings,” says Pierre Theodore, M.D., Vice President, Medical Affairs, Global Public Health, Johnson & Johnson, who is spearheading the company’s mobile health clinic program. “The mobile clinics we are supporting in Detroit and New Orleans serve communities that have been disproportionately affected by COVID-19. Promoting access to testing and directing patients to appropriate care remain important strategies to address the ongoing pandemic.”
Facing down deeply rooted racism when it comes to maternal health
When the 116th Congress began in 2019, “we saw record numbers of women of color become elected freshmen members,” says Jane Adams, Vice President of U.S. Federal Affairs, Johnson & Johnson.
This came at a time when, as Adams puts it, there was “an understanding and an outrage” about the topic of disparities in maternal health.
Indeed, the facts are grim: Black, American Indian and Alaska Native women are two to three times more likely to die from pregnancy-related causes than white women—and that number is four to five times higher for women older than 30, according to the CDC.
The new makeup of Congress energized the momentum to find legislative solutions and “was an opportunity for Johnson & Johnson to continue our commitment to improving maternal health, health disparities and social determinants of health to help make sure that women—particularly women of color—are receiving the best healthcare, both prenatal and postpartum,” Adams explains. “We have to build support, build a coalition, educate and hear the stories so we may understand where there are deficits in protection, public policy and funding.”
And that’s just what the company did, as the only corporation to endorse the Black Maternal Health Momnibus Act of 2020—led by then Senator Kamala Harris, Representative Lauren Underwood and Representative Alma Adams—which is legislation that contains nine bills to comprehensively improve maternal health outcomes and end disparities. The legislation will, for example, provide funding to community-based organizations working to improve maternal health outcomes for Black women, grow and diversify the perinatal workforce to provide trustworthy care, and improve data collection processes to better understand the causes of the maternal health crisis.
In 2018, Johnson & Johnson also partnered with 90 nonprofits to push for a vote on the Preventing Maternal Deaths Act of 2018 that was signed into law in December 2018. The legislation creates a federal infrastructure and resources to collect and analyze data on every maternal death in all 50 states. Collecting this data is essential because it can help inform policies and programs to help prevent future fatalities.
For example, when the CDC analyzed data from 2008 to 2017, it concluded that two-thirds of maternal deaths could have been prevented. So expanding this type of data collection will help increase the amount of mothers who can be studied—and hopefully find ways to prevent more deaths.
The ongoing pandemic has only increased the urgency of this work.
Look at what’s going on in America today—our husbands, our fathers, our brothers are dying. If a pregnant woman is worried about the safety of her son, of course she’s going to be at a higher risk for certain comorbidities, such as ones that may impact mental health.
Take the issue of access to regular prenatal care, which can help reduce pregnancy complications for both mothers and babies. During the pandemic however, many providers have shifted to telemedicine, which could have a negative impact on women who live in communities that might not have reliable internet access or cell phone service.
There’s also the vital role of patient advocates. According to a national survey, more than 20% of Black mothers who gave birth in a hospital reported feeling that they had received poor treatment due to race, ethnicity, cultural background or language. As hospitals have limited or banned birth partners and visitors due to COVID-19, this may have a direct impact on some mothers who need support from such advocates to feel safe and heard during and after labor.
Aisha Kendrick, MSN, APN, CNS, RNC-OB, a perinatal clinical nurse specialist and member of Sigma Theta Tau International (Sigma), has worked in underserved Chicago communities for over 20 years and has seen this play out firsthand. Kendrick is an alumna of the Sigma/Johnson & Johnson Maternal Child Health Nurse Leadership Academy, which teaches leadership skills to improve the quality of patient care.
“I have been in situations where women were denied family or friends at the bedside for various arbitrary reasons, such as the age or number of visitors,” she says. “It can be vital to have your sister, your aunt, your mother, your grandmother there to advocate for you during a time of vulnerability.”
To help improve experiences for expectant mothers during the pandemic, Johnson & Johnson signed on to a letter earlier this year from the Equitable Maternal Health Coalition—a group initiated by Johnson & Johnson and various partners that’s focused on delivering safe, affordable and equitable access to maternal healthcare—asking Congress to address the impact that COVID-19 may have on maternal mortality.
The letter asked for a number of specific recommendations to be included in a future legislative package responding to the pandemic, including expanding surveillance efforts to monitor the impact of COVID-19 on maternal health outcomes, ensuring that pregnant and breastfeeding women of color are included in ongoing research and data collection and prioritizing rapid response diagnostic testing and personal protective equipment for labor and delivery units.
“The stark racial disparities in maternal mortality rates in the United States are unacceptable, and the troubling data on COVID-19 disproportionately affecting communities of color only makes this crisis more urgent,” says Jill Arnold, Director of the Equitable Maternal Health Coalition. “To begin to make progress, it is essential to face implicit bias and gaps in data head-on. For example, pregnancy status must be included as part of the demographic data that’s being collected and reported on COVID-19 in order to inform future policy to protect pregnant and postpartum women. We just launched an initiative to improve the quality of hospital-derived data on race and ethnicity to ensure that researchers and community members can better study—and mitigate—inequities and the harmful impact of racism.”
That’s because the effects of implicit bias and racism can be tragic.
“When I first started out as a nurse many years ago, I remember a 17-year-old African American woman who came in to give birth,” Kendrick recalls. “She had been a victim of rape, and she was HIV+. During the C-section, the doctors made the decision to perform a tubal ligation without her written consent. This was a girl with her whole life ahead of her. And she was never even given the option. It haunts me to this day.”
Seeing injustices like this throughout her career inspired Kendrick to take action, and she is now a Ph.D. student working on a dissertation about maternal health disparities.
“Black women can disproportionately enter pregnancy at a disadvantage that places them at increased risk for comorbidities,” she says. “But you also have to look at what’s going on in America today—our husbands, our fathers, our brothers are dying. If a pregnant woman is worried about the safety of her son every time he leaves the house, of course she’s going to be at a higher risk for certain comorbidities, such as ones that may impact mental health. This is all going to affect her birth outcomes.”
Which is why Kendrick has resolved to speak to—and represent—one of the most overlooked populations in maternal health research.
“In all of the qualitative literature I’ve looked at on maternal health disparities, I’ve found limited information that discusses the perspective of African American women,” she says. “No one has even asked us what our feelings and thoughts are. No one has even considered us. Our voice is not well represented in the research. And I’m determined to change that.”
Watch this video to hear more from Debra Furr-Holden about racial disparities in COVID-19 testing:
This story is dedicated in loving memory to our beloved colleague and friend, Wanda Moebius.