When the late Congressman John Lewis announced he had Stage 4 pancreatic cancer in December 2019, the civil rights icon shed new light on a disease that kills Blacks at a much higher rate than other races or ethnicities in this country.

“I have been in some kind of fight — for freedom, equality, basic human rights — for nearly my entire life,” he said. “I have never faced a fight quite like the one I have now.”

He lost that fight seven months later. Blacks have a 20% higher fatality rate compared to whites in the United States — and it’s often too late by the time patients learn they are ill.

Stanford Health Policy’s Alyce Adams, PhD, MPP, is on a mission to take a message of early detection for pancreatic and other diseases into Bay Areas communities of color. And she is collaborating with the National Pancreas Foundation on a digital tool that has received more than 15,000 page views since its launch last year. The project uses audio, graphics, quizzes and videos to education African Americans about pancreatic disease, including a moving one with members of the Lewis family raising awareness of the cancer that took the Georgia congressman.  

“So many people have never even heard of the pancreas,” Adams said. “So, leveraging the research that we do know about the pancreas and how it relates to diabetes and other conditions, really getting that information out to the community is the goal of this digital tool.”

Health Fair

The epidemiologist who focuses on racial and socioeconomic disparities in chronic disease outcomes joined other Stanford Medicine and Stanford Health Care researchers, officials and staffers at the Allen Temple Baptist Church in Oakland on July 15 for its 43rd annual health fair. They were there to promote Stanford’s commitment to community outreach. Stanford Health Care contributed $642.5 million to its Community Health & Partnerships Programs in 2022, a 32% increase from the previous year, collaborating with local organizations to help meet the needs of the most vulnerable and underserved populations in Northern California. 

“I think it's really important to get out into the community because ultimately the community is the expert about health in their community,” said Adams, a professor of health policy and the inaugural Stanford Medicine Innovation Professor. Representing the Office of Cancer Health Equity and Community Engagement at the Stanford Cancer Institute, Adams was handing out fliers and talking with community members at the Stanford tables, which also focused on early detection of lung, liver, prostate, and breast cancers. The Stanford Blood Center mobile was in the parking lot taking donations.

“By talking with them, we get a better understanding of their priorities, what's really on their minds, and then we can determine how that tie that back to the research that we're doing,” Adams said.

The social determinants of health — such as where one lives, education levels and access to health care and insurance — remain the leading factors behind the health inequities in this country. According to the U.S. Department of Health and Human Services , the 2021 life expectancies at birth for Blacks is 70.8 years, compared with 76.4 years for non-Hispanic whites. And the death rate for African Americans is generally higher than whites for heart disease, stroke, cancer, asthma, influenza and pneumonia, diabetes, HIV/AIDS, and homicide.

“In the past for health equity, we primarily focused on health-care delivery, whether or not people had good access to high-quality care,” Adams says in this video about the social determinants of health. “As important as that is, a lot of the factors that contribute to the disparities that we see actually happens long before anyone comes into a clinic. It really is where you live, where you work, and how you live that influence your outcomes.”

Getting Off Campus

Sridhar Seshadri, DBA, Stanford Health Care's Chief Cancer Operations Officer, joined the Stanford team at the Allen Temple Baptist Church to provide support and chat with the hundreds of church and community members who attended the daylong fair in Oakland.

He commented on the cutting-edge research and clinical trials that happens on the Stanford campus in Palo Alto. “And we need to do better about taking it out into the community,” he said. “We should not expect that all the people who deserve and need the care, will all come to Palo Alto.” 

So one big focus, he said, is for the Stanford science and clinical trials to make it off campus so that Californians know they can benefit from that research at one of the health system’s hospitals and clinics. 

Never Too Early

A handful of teenage girls from an Oakland Girl Scout troop attended a breast cancer workshop in one of the church classrooms to learn about the importance of screening and early detection of breast lumps. Though mammograms aren’t recommended until women are 40, Candice Thompson, MD, a breast surgeon and clinical assistant professor of surgery at Stanford Medicine, told the girls it’s never too early to learn about their genetics and family history of breast cancer, adding that Black breasts are denser than those of white women, so it’s important to start familiarizing themselves with their own anatomy.

The young Black women heard some startling statistics. Though slightly more white women in the United States are diagnosed with breast cancer, Black women have a 40% higher rate of dying from the disease than their white counterparts, due to genetics, socioeconomic status and access to health care. Black women under the age of 35 are twice as likely to be diagnosed with breast cancer and three times as likely to die.

“There are a lot of health disparities when it comes to breast health and breast cancer, especially in the Black community,” Thompson said. “So I think it’s crucial to educate this young population — because it's not being done in the schools — and just getting out there and helping them understand things that they can do to catch things early.”

The girls, wearing tan vests covered with Girl Scout badges, were shown how to look for breast malformities on dummy breasts, noting it wasn’t as easy as they thought.

“Even though we’re at a young age it was good to know what to look for, what to start thinking about,” said 18-year-old Valise Ferguson.