In 1932, 600 Black men signed up for a study that’s come to be known as one of the most pernicious, deceitful experiments in American history.
The Tuskegee Study of Untreated Syphilis in the Negro Male masqueraded as an investigation into treatments for “bad blood,” a catchall term used in the 1930s for various illnesses. In reality, it was a U.S. Public Health Service study meant to observe how untreated syphilis affected humans.
The terms we use to refer to people of Latin American descent are evolving. This issue of Stanford Medicine uses Latino and Hispanic as well as a newer term, Latinx, which is intended to be explicitly gender-neutral.
Lured by free medical care and meals in exchange for participating, hundreds of Black men who had syphilis enrolled.
During the 40 years the study ran, more than 100 participants died of the disease or syphilis-related complications at the hands of the U.S. government. Few men received treatment for the disease, despite the discovery in the early 1940s that penicillin effectively treats syphilis.
The experiment shut down after the Associated Press exposed the study in 1972.
An enduring mistrust of the medical establishment among Black people — especially Black men — followed, said Italo Brown, MD, a Black clinical assistant professor of emergency medicine, physician and health disparity researcher. Medical mistrust, said Brown, contributes to health disparities.
“Medical mistrust exists because of structural racism; inequities in health outcomes exist because of structural racism,” he said. “There’s a common thread, and if we work to address that one underlying factor — structural racism — we’ll see a significant shift towards better, more equitable health for all.”
Health and health care inequity in the United States remain entangled with race. African Americans have the highest mortality rate for all cancers when compared with any other racial or ethnic group. Indigenous American and Alaska Native adolescents are 30% more likely to be obese than white adolescents.
“Desegregating hospitals” describes how Stanford graduate Philip Lee, MD, championed Medicare under President Lyndon B. Johnson.
When compared with white women, Latinas are 40% more likely to have cervical cancer and 20% more likely to die from it. The COVID-19 pandemic has disproportionately affected Black and Latino Americans who, during the first six months of the pandemic, made up 58% of all patients hospitalized for COVID-19 and 53% of those who died from it, according to research from Fatima Rodriguez, MD, assistant professor of medicine.
These are just a few examples of hundreds of documented disparities in what many believe is a legacy of systemic racism that has historically rejected the importance of diversity and equitable access to health care and other critical resources for racial and ethnic minorities.
Health disparities can be caused or exacerbated by poor living conditions, a lack of access to health care and low-paying jobs, among other factors.
“Racial inequity is a public health crisis that’s never been solved,” said Lloyd Minor, MD, dean of the Stanford School of Medicine. “Academic research plays a critical role in not only shedding light on why these challenges exist but also in devising new solutions that will help dissolve these long-standing disparities and pave the way to health equity.”
The field of health disparities research started to take shape in the 1980s, said Monica Webb Hooper, PhD, the deputy director of the National Institute on Minority Health and Health Disparities. To gauge progress in the field, Webb Hooper looked to the National Institutes of Health’s PubMed database.
Between 1980 and 1990, she found just a few published studies on racial health disparities. In the past decade, more than 10,000 mentioning these key words have been published, but there’s still plenty of work to do, she said.
“There’s certainly been progress in reducing disparities, but because of the complexity of the issues, it’s not happening at the pace that many of us would like to see,” said Webb Hooper.
To that end, Stanford researchers and clinicians are redesigning health care strategies and implementing new approaches to reach marginalized communities. Below is a small sample of their work.
Health check and a haircut
Barbershops serve as sites to help deliver health checks in Black communities.
Why it matters: Black men in the United States are less likely to trust doctors and seek medical treatment.
Barbers in predominantly Black communities are being trained to better serve clients — and it has nothing to do with the ’do.
In two projects with Stanford leaders — the Cut Hypertension Program and TRAP Medicine — physicians teach barbers in cities throughout the United States about health and wellness so they can share what they learn with clients, mostly Black men and boys.
Health disparity researcher Italo Brown, MD, conducted a survey of 2,500 Black American men in late 2019 and early 2020 confirming his hypothesis that they were more comfortable having conversations about health, racism, violence and police brutality in barbershops than at doctor’s offices.
“Our big idea is to leverage cultural capital to deliver health information and promote wellness directly to predominantly Black neighborhoods that have been chronically disadvantaged,” said Brown, who is chief impact officer for TRAP Medicine (for Trust, Research, Access and Prevention) and served as an early adviser to the program’s founder, Jahmil Lacey, during its 2014 launch in Oakland, California.
Barbershop-based health support in Black communities is a strategy that has gained popularity over the past decade. TRAP Medicine’s focus is training barbers to dispel stigmas about mental illness and teach about topics including the importance of prostate checks, practicing safe sex, and healthy eating and exercise habits.
In some shops, TRAP Medicine arranges for local medical or nursing organizations to conduct free blood pressure or blood glucose checks.
The Cut Hypertension Program, led by Kenji Taylor, MD, instructor of medicine, has a similar mission, with a twist: Taylor founded the program 10 years ago, when he was a medical student at the University of Pennsylvania, to curb the disproportionate cardiovascular disease burden Black people carry.
The Centers for Disease Control and Prevention reports that Black people between 18 and 49 are twice as likely to die from heart disease as their white counterparts.
The program certifies barbers as health coaches and trains them to measure blood pressure and talk with clients about their medical problems and cardiovascular health. Barbers refer clients with high blood pressure to local clinics.
“This is a partnership between the community, health care professionals and academics,” said Taylor. “It’s built on trust, communication and data. That’s what makes this work.”
The Cut Hypertension Program recently implemented a model — developed by researchers at the Cedars-Sinai health organization in Los Angeles — in which a program pharmacist works virtually to treat hypertension in clients receiving health coaching at some Bay Area barbershops.
Both programs are working with barbershops locally and nationally: Cut Hypertension has partnered with barbers in Atlanta, Philadelphia and in the Bay Area cities of Oakland, San Francisco and Vallejo; and TRAP Medicine has partnered with barbers in Atlanta, Los Angeles, New York and Oakland.
In response to the COVID-19 pandemic, the programs have shifted their focus to COVID-19 education. Members of both organizations are compiling resources that spell out how barbers can protect themselves and their clients from infection — things like social distancing, using personal protective gear and taking heightened hygiene measures.
And the programs’ leaders are thinking about how barbershops could act as hubs for COVID-19 resources, such as testing or vaccinations in communities of color.
‘With us and by us’ not ‘on us for others’
In partnership with American Indian tribes, researchers support the infrastructure for a biobank with Indigenous people that is owned and operated by Indigenous scientists and tribal members within the geographic and legal jurisdiction of a tribal nation.
Why it matters: While helping to build a biobank, researchers are recognizing the sovereignty of data and biological samples of Indigenous peoples, respecting the cultural practices and prioritizing precision health by focusing on much-needed public health projects.
Researchers’ efforts to collect biological samples from people of varying genetic ancestries often miss the mark on diversity — Indigenous people, for instance, are among the least represented in the United States and, moreover, the Western Hemisphere.
Past research that focused on the health of Indigenous Americans has also sown mistrust between some tribes and the scientific community after some researchers said they would use the data to study obesity, but instead used it to study the genetics of the offspring of parents who are close blood relatives.
A newer project, Bio-Repository for American Indian Capacity, Education, Law, Economics and Technology, or BRAICELET, started six years ago in collaboration with a Northern Plains tribe and the Stanford Precision Health for Ethnic and Racial Equity Center as the first biobank to lie within the borders and legal jurisdiction of an American Indian tribe.
“Many of the health inequity and data sovereignty issues that Indigenous people face are playing out for other minority populations, too,” said Joe Yracheta, an Indigenous research scientist for the project.
“I see American Indians in a crucial leadership role in navigating these complicated social, legal and technological discussions, and our effort to do so is growing every day.”
That’s why research scientist Jennifer Li-Pook-Than, PhD, takes a different approach to the BRAICELET biobanking project. The focus: data sovereignty, meaning those who provide the data also own that data and decide how and when it is used in research.
The biobank is a four-way partnership between a tribe in South Dakota, two American Indian research organizations, and the Stanford Precision Health for Ethnic and Racial Equity Center.
Li-Pook-Than, Stanford’s project leader, said that one priority is for tribal members — including research professionals or other scientifically trained individuals — to fully run the biobank.
Yracheta sees opportunities to build new infrastructure to support the biobank’s growth, which would indirectly boost the tribe’s community economy, political leverage and understanding of their health, as well as science and big data.
The project team has collected and stored thousands of samples, which the researchers have used to better understand, diagnose and treat rheumatoid arthritis, an autoimmune disease that is common in American Indians.
Research using biobank data has so far revealed important genetic differences in how rheumatoid arthritis develops and responds in Indigenous people compared with white people, findings that the group hopes to publish soon.
Food as medicine
Researchers are testing whether better access to healthy foods, including fresh produce and leafy greens, can improve well-being and mitigate chronic disease.
Why it matters: People who lack access to healthy foods are at increased risk for a range of chronic diseases.
A box of produce a week keeps the doctor away — or so goes the saying behind a project led, in part, by Lisa Goldman Rosas, PhD, assistant professor of epidemiology and population health and of medicine.
Goldman Rosas, a longtime health researcher and advocate for under-resourced populations, is helping bring healthy foods — carrots, kale, cabbage and other vegetables — to communities where people of color have higher rates of chronic disease and face food insecurity.
“I spent a lot of time working in the Salinas Valley during graduate school with people who were picking the fruits and vegetables that were in local grocery stores, yet they couldn’t afford to buy these foods for themselves.” Goldman Rosas said.
In her latest project, called Food as Medicine, Goldman Rosas has teamed up with community health centers, including ALL IN Alameda County; Community Health Center Network; Open Source Wellness; and Dig Deep Farms, a Bay Area sustainable farm, to provide fresh produce to individuals and families who cannot afford or cannot conveniently purchase such foods.
The project, which is also a study, began in 2018 through a clinic at the Tiburcio Vasquez Health Center, which primarily serves Latinos in San Leandro, California.
The project has since launched in Alameda County, hosted through a community health center, which uses state and federal funding to provide care for people who lack adequate insurance.
The idea is to provide a weekly batch of fresh vegetables to patients who are at risk for at least one chronic disease — such as diabetes, high blood pressure, heart disease or depression — and monitor their health over 16 weeks.
The researchers use data from electronic medical records to monitor health measures — such as blood pressure, cholesterol and glucose levels — to assess the impact of eating more dark, leafy greens and other vegetables.
Participants also attend group counseling to learn about making healthy meals and ways to be more physically active. During the COVID-19 pandemic, Food as Medicine has switched to delivering a box of produce to patients’ doorsteps and moved counseling online.
After 16 weeks, Dig Deep Farms representatives help families continue to receive healthy produce through food banks by using food stamps and through other means.
Next, the team plans to analyze how a change in diet impacts health, said Goldman Rosas. They’re also expanding the program in Alameda County, where food insecurity has reportedly doubled during the pandemic, she said.
Finding the full spectrum
Amid the COVID-19 pandemic, dermatology research is short on data about heavily impacted racial and ethnic minority groups.
Why it matters: Skin conditions, including those associated with COVID-19, can manifest differently on skin with varying levels of pigmentation, making it easy to misdiagnose people of color.
Doctors once thought that SARS-CoV-2 attacked only lung tissue, but they now know about a variety of telltale symptoms of COVID-19, including certain rashes and skin lesions — such as painful red or purple areas on toes — called COVID toes.
Yet Eleni Linos, MD, DrPH, professor of dermatology and epidemiology, who leads research focused on applying technology to reduce health disparities, observed an unsettling disconnection between what she saw in her COVID-19 patients and what she encountered in the scientific literature.
“We saw that journal articles describing the conditions were showing dermatological symptoms on almost exclusively light-skinned individuals,” said Linos. “We know people of color are disproportionately affected by this disease, and it didn’t add up.”
She formed a diverse team, including Jenna Lester, MD, a dermatologist at the UC San Francisco, who created the first Skin of Color clinic in San Francisco, and Lucy Zhang, an early Google engineer and one of the creators behind Facebook Messenger. Together, they analyzed skin tones referenced in 36 COVID-related dermatology journal articles published between Dec. 31, 2019, and May 3, 2020.
For their analysis, researchers used a standardized scale known as the Fitzpatrick classification, which categorizes skin tones on a scale of 1 through 6, with 6 being the darkest.
The vast majority of the studies on skin-related COVID-19 symptoms included images of skin only in categories 1-4. The analysis also showed that, of the papers that captured race and ethnicity data, 91% of the studies’ patients were reported to be white.
Dermatologists are trained to recognize certain features or patterns associated with particular diseases — but signs of disease on skin can change with different pigmentations.
If doctors learn to detect skin abnormalities only in people with light skin, they run the risk of incorrectly identifying conditions in people with dark skin or missing them altogether.
“As a field, dermatology’s textbooks and educational materials, our databases and our publications are not representative of all skin types,” Linos said. “Our goal is to hold ourselves and our colleagues accountable so that we ensure the same level of care, information and education for people of all backgrounds.”
Their campaign has had some success. The cover of the October 2020 British Journal of Dermatology featured an image of COVID toes on dark skin. “We’re on the lookout for the bigger picture and are seeking a more diverse set of images to represent disease across a spectrum of skin color,” said John Ingram, MD, PhD, editor-in-chief of the journal.
Identifying the problem, said Linos, is an excellent start, but more is needed. “It is all of our responsibilities — primary care doctors, patients, dermatologists, researchers, journal editors. We all need to be aware that this is a problem so we can actively choose to be a part of the solution,” said Linos.
For example, doctors can photograph skin conditions on people of color, then, with patient permission, share the photos with researchers for scientific studies. “We must address it, and quickly, because ultimately the quality of patient care depends on it.”
Battling bad air
Researchers study the effects of air pollution and wildfire smoke on people in communities of color.
Why it matters: A clearer understanding of the effects of air pollution and wildfire smoke on health can inform projects and policies to mitigate harm.
For the past six years, Mary Prunicki, MD, PhD, senior research scientist, and Kari Nadeau, MD, PhD, professor of pediatrics, have studied how air pollution, including wildfire smoke, impacts children’s health — particularly in Fresno, California, where Latinos account for about half of the population and the air quality is among the worst in the nation.
“Studies have shown that communities that are traditionally underserved produce less pollution but bear more of the burden,” said Prunicki. She and Nadeau, director of the Sean N. Parker Center for Allergy and Asthma Research, are studying how tiny particles of pollution in the air rewire the immune system in kids and adolescents.
In the body, certain genes regulate immunity. Prunicki and Nadeau’s studies have shown that high levels of air pollution or smoke dampen these genes’ ability to function. The genes most impacted by pollution control T regulatory cells — immune cells that Prunicki describes as “peacekeeper” cells.
“You need these cells to have a balanced, optimally functioning immune system,” said Prunicki. “People who are exposed to elevated levels of air pollution have fewer of them.”
The research also shows that spikes in air pollution — like those caused by wildfires — can spur changes to the immune system in just a week. Whether those changes, such as an influx of inflammatory molecules, are sustained and for how long is still to be determined.
Research into how air pollution harms the body is ongoing, but some studies point to a class of particulate matter called PM 2.5, meaning any floating particles that are less than 2.5 micrometers across. Air purifiers, central air conditioning and well-insulated homes can help keep bad air out and good air in, said Prunicki, but such measures are often unavailable to people in low-income communities, which are often communities of color.
So she and Nadeau are pursuing funding for a project that aims to “weatherize” homes in low-income Fresno communities, which are predominately Latino. Nadeau, a professor of medicine, holds the Naddisy Foundation Endowed Professorship in Pediatric Food Allergy, Immunology and Asthma.
The plan is to help seal out the unhealthy air and keep indoor air cleaner by improving the structure and energy efficiency of older homes that are drafty, have old insulation or have mold.
The researchers also plan to install air purifiers that filter out PM 2.5 molecules in communities in Fresno as part of an upcoming study that tracks how wildfires impact participants’ health at a molecular level.
“Some participants will have a sham purifier so that we can see what difference a real purifier makes,” said Prunicki. “But after the study, all participants will receive a working air purifier for free.”