Oakland heart study subjects want another 30 years
on October 26, 2016
Wanda Johnson was on her way to a conference when she enthusiastically stopped a stranger walking through an airport. He was wearing a CARDIA T-shirt, so she immediately recognized that their hearts were connected—at least in research papers.
“I probably scared him a bit,” she said. “It’s like a little brotherhood or sisterhood.”
CARDIA—short for Coronary Artery Risk Development in Young Adults—is a study that began in 1985 involving more than 5,000 participants across medical research sites in Oakland, Chicago, Minneapolis, and Birmingham, Alabama. Funded by the National Institutes of Health’s National Heart, Lung, and Blood Institute, the study tracks people’s heart health and related risk factors for heart disease. Participants go through examinations that test the overall health of their hearts, and complete surveys regarding controllable risk factors, such as diet and exercise. The results are then shared with the patients, who are all part of the original group.
The initial study commitment was five years, but it continues on with an end date—for now—of 2018. That means that the participants have been checking in with the CARDIA team for more than 30 years.
On Saturday, more than 200 CARDIA participants gathered at the Impact HUB in Oakland to celebrate, among other things, their contributions to heart research that’s been cited in more than 650 published research articles and a thousand presentations, according to Dr. Stephen Sidney, head researcher at the Oakland site where half of the participants are African American. “It’s a pretty remarkable study,” Sidney said. “It’s rare for studies to go on this long.”
The study is observational, meaning researchers didn’t tell subjects what to do. Rather, they question them on their behaviors and test aspects of their cardiovascular health. They have used electrocardiograms to test the structure of their hearts, including its function and blood flow. Other, short-term funding was allotted for measuring lung function. In the latest round of tests, a quarter of participants underwent brain scans to see how their lifestyle choices affected their cognitive functioning.
“We were able to peek into little things at five years and what it could mean further down the road,” said Sidney, director of research clinics and a senior research scientist with the Kaiser Permanente Northern California Division of Research. “Basically what you do when you’re young, those things are very predictive whether you’re going to have a healthy life later on.”
Being part of a 30-year study has helped patients not only feel a sense of accomplishment in contributing to the scientific understanding of heart health, but has also helped them better understand their own health.
Johnson, who is from Oakland, began the study as a 27-year-old first-time mother in nursing school. She’s now a mother of three grown children and a nurse practitioner who works with the homeless in a mobile clinic for Alameda Health Systems. Participating in CARDIA not only inspired her to be mindful of her health, but solidified her career choice.
The results that come from the research team at Kaiser Permanente give her the opportunity to see not only how the little choices she’s made over her life have made differences to her health, but also show her that she’s helped improve heart health for future generations. She’s happy to continue to be a research subject for the rest of her life. “It’s like looking at a snapshot of my internal health,” she said. “That’s why I’m so proud to be part of this study. My cutoff would be that little pine box.”
Being a participant has a social aspect, too, beyond meeting that stranger in the airport. Johnson has a friend in the study as well, so when she gets word it’s time for another round of tests, Johnson gets on the phone to make sure her friend goes, too.
In the world of medical research, the CARDIA study is a rarity, partly because it’s been going on for so long. It’s also because of who it follows. In the mid-1980s, when CARDIA began, the body of scientific evidence regarding cardiovascular health was focused on middle-aged white men, not healthy young black women like Johnson. Through the four sites, CARDIA became the first major study of heart health to incorporate young black and white men and women.
Through the hundreds of thousands of tests administered to participants, starting at two years after they entered the program and running through the 30-year mark, the pitter-patter of all those hearts has helped researchers better understand what’s common knowledge now: Don’t smoke. Limit alcohol. Cut down on red meat. Don’t fry all your foods. Exercise. Keep your stress down.
It also examined the vast racial disparities in health care, including how, by the 20-year follow-up mark, 26 African American patients had suffered from heart failure while only one white patient did.
At Saturday night’s reunion, Sidney took the stage to hoots, hollers, and loud applause. The audience laughed at the idea of how many tests they’ve gone through over three decades, considering they originally signed up for a five-year study. They applauded at the idea of 30 more years of the study, even though funding is only secured for two more years.
At the beginning of his presentation, Sidney experienced technical difficulties getting his microphone to work. He asked the audience if just his voice was loud enough for them to hear.
“No! We’re over 50 now!” one man shouted to even more laughter.
In addition to celebrating the hundreds of people from the Oakland site who were alive and healthy, Sidney also recognized the 95 participants who have died since CARDIA started.
Mitchell Black—originally from Oakland and now of Stockton—attended the event with his wife, Rhonda. The CARDIA study was not only the reason he attended the event, but also likely the reason he was alive to be there. While undergoing chemotherapy and radiation treatments for prostate cancer in 2010, Black was called in for another round of tests for CARDIA. His 25th test involved a chest scan.
“They found a mass on the main artery in my heart,” he said. “If it wasn’t for CARDIA, I wouldn’t have known about it. It saved my life.”
The CARDIA doctors told him to contact his personal doctor, and during a 9-hour surgery, his doctors found not only the 2.3-centimeter calcified mass the CARDIA scan had spotted, but a second one. Black eventually made a full recovery from both the surgery and the cancer.
During the last round of tests for CARDIA, Sidney personally let Black know he was now healthy again. “That put a personal touch to it,” Black said.
People in the study said CARDIA has not only improved their lives, and helped others who have benefitted from the research, but also serves as a regular reminder to avoid things that could damage their hearts.
Greg Morgado began CARDIA during his second year as a deputy with the Alameda County Sheriff’s Office. It’s a high stress job, so Morgado was already taking care to avoid the “cadet diet”: cigarettes, candy, alcohol and donuts. But since his own father died at 50 years old, Morgado wanted to find out more about what the future had in store for him and his heart.
The first exam “felt like a thousand questions,” he said. They wanted to know about his diet, exercise, stress levels and more. “I was hooked then,” Morgado said. “If it has to be answered every five years, I might as well take care of myself.”
Now a senior security event representative as at the Oakland Coliseum and Oracle Arena, Morgado might not be able to keep up with Steph Curry, but he’s healthy enough to feel like he’s part of a control group in the CARDIA study. He responds every time he receives a letter in the mail to come in for more information or more tests.
“They’re never really out of your life,” he said. “I think it’s valuable to participate.”
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