Volunteers remain at study's heart

More than 50 years ago, Evelyn Langley couldn't have known she would contribute to major advances in medicine simply by going door to door in her neighborhood near the Woodrow Wilson Elementary School in Framingham.

"Some people were willing to listen to what we had to say," she said in a phone interview last week, "and others would say no, they didn't want anybody to know anything about their medical history."

One of the community leaders who made the world-famous Framingham Heart Study possible, Langley is now one of the stars of "A Change of Heart: How the People of Framingham, Massachusetts, Helped Unravel the Mysteries of Cardiovascular Disease."

The book, published this month, was written by cardiologist Daniel Levy, current director of the project, and journalist Susan Brink.

"It's about history and the journey of discovery, and trying to make a field of science exciting and accessible," Levy said last week.

For local readers, the book holds a mirror to their community in the second half of the 20th century. Framingham was chosen for the groundbreaking study because of its ordinariness. Its residents were ethnically mixed and middle-class. Their lifestyles were also in synch with those of the times.

Not knowing there were any health consequences, Framingham residents, like millions of their contemporaries, ate diets high in fat, smoked, and glued themselves to new televisions as their communities pulled up sidewalks that didn't seem necessary in the age of the automobile.

Fifty percent of Framingham adult residents agreed to undergo a battery of tests and were checked and rechecked every two years. Researchers did not treat them or ask them to change their lifestyles. They observed and learned, looking for patterns and clues on how to prevent heart disease.

The book's authors say the study, begun in 1948, was revolutionary in the fight against the nation's number one killer. Millions of lives have been extended thanks to the study, they write.

Cardiologist Roger S. Blumenthal agrees. The director of the Johns Hopkins Ciccarone Preventive Cardiology Center in Baltimore, Blumenthal said the study was one of the most important advances in public health in the 20th century.

"The Framingham Heart Study is the cornerstone of preventative cardiology and is the foundation for much of the advancement that we've made in lowering people's risk of heart disease and stroke," he said. "It really proved there are certain risk factors for heart attack and stroke that need to be dealt with."

But to make the study work in Framingham, people had to be persuaded to participate by someone they trusted. Someone like Langley.

Langley, who turns 90 tomorrow, said she got involved in the study through the school Parent Teacher Association, of which she was president. The "very community-minded" principal at the elementary school, Mary Stapleton, asked Langley and other PTA members to help, so they did, Langley said last week.

They had their work cut out for them. The population of Framingham was 28,000, and Langley and her comrades had to persuade half of the town's adults between the ages of 30 and 59 to participate in order to get the necessary sample size. Ultimately, they did.

As for those who didn't participate? "Their loss," says Langley.

She was one of 5,209 Framingham residents who allowed their blood to be drawn, their hearts to be heard, and their chests to be X-rayed in a four-hour exam once every two years.

Three of her four children are part of the second generation of the study, begun in 1971 with 5,124 participants. Several of her grandchildren, a brood that includes major league baseball player Lou Merloni, have signed up for the third-generation study, comprising 4,100 people, which began in 2002.

Study participants are now spread out around the country and the world. Levy lauded their enthusiasm, pointing out that they've traveled from 45 of the 50 states and from several foreign countries to continue to participate in their exams.

"It has been amazing and it has been humbling to see the devotion of the community," said Levy, who co-wrote the book on his own time.

The study is sponsored by the National Heart, Lung, and Blood Institute, successor to the National Heart Institute.

Levy gives a large portion of credit for the funding of the study to scientist Vannevar Bush, who headed the Manhattan Project before he became director of the Office of Scientific Research and Development after World War II.

Bush, no relation to the current president, transferred the wartime management skills he learned in overseeing the creation of the atomic bomb to the peacetime effort of fighting heart disease, persuading President Harry Truman to fund the National Heart Institute.

Perhaps the best-known legacy of the study is the discovery of "risk factors," a term coined by study clinicians, who taught the country that high blood pressure, high cholesterol, smoking, and obesity increase a person's chances of heart disease.

That is well known now, of course, write the authors, but it was a revelation to earlier generations, who thought of heart attacks and strokes as sudden assaults that came without warning.

Although the death rates for cardiovascular disease have dropped, Levy said, there is still a long way to go. The risk factors are well publicized, he said, but two-thirds of the roughly 65 million people who have high blood pressure in the country have not brought it under control despite tools at their disposal such as medicine, diet changes, or exercise.

Langley herself has embraced suggested lifestyle changes. She no longer eats fried foods, tries to limit time watching the "boob tube," and walks as much as possible, staying active by volunteering every day with the Callahan Senior Center in Framingham.

She also gives the study credit for the early detection of what turned out to be a cancerous spot on one of her kidneys, which she had removed a couple of years ago.

She said she's been doing fine ever since. She still goes in for tests whenever the Heart Study calls. The most recent one, she said, was a neurological exam a few months ago.

"That was fun," said Langley. "They give you blocks of paper and drawings to do. I imagine what they're doing is seeing if your brain is in the same capacity as it was 50 years ago."

The authors end the introduction to their book with high praise for Langley and her neighbors:

"In an experiment little known to outsiders, one New England town changed the practice of medicine and the lifestyles of tens of millions."

Lisa Kocian can be reached at 508-820-4231 or by e-mail at lkocian@globe.com.