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About 1 In 25 Black Americans Carries A Gene Linked To A Fatal Heart Disease. Most Don’t Know It.
By: Kimberly Wilson
Morgan Freeman has played God, not once, but twice on screen and has spent six decades narrating some of the most celebrated stories ever told.
He has built a legacy that most Black actors (or any actor for that matter) only dream about across a career that now stretches well into his late eighties. At this point in his life, he is selective about what gets his time and attention. He has to be. And right now, he is using that platform to try to save lives in the Black community.
Freeman is the face of “Don’t Pass On Your Heart Health,” a national health education initiative developed in partnership with biotechnology company BridgeBio Pharma. The campaign centers on ATTR-CM, or ATTR-cardiac amyloidosis, a progressive and often fatal heart disease that disproportionately impacts Black Americans and remains significantly under-diagnosed, even by the doctors who treat heart failure every day.
Freeman was drawn to the campaign for personal reasons. “Although I don’t have ATTR-CM, I have experienced a heart condition,” he said. “And so now I feel that speaking from the heart, so to speak, has an even more profound meaning.”
At 88, Freeman shows no signs of stepping back from much of anything, and that’s not just when it comes to acting. He still goes to the gym, still takes the golf course seriously, and yes, in a new film project every time we turn around. He just starred in the third installment of the Now You See Me franchise last year, in fact. He has taken Clint Eastwood’s philosophy as his own north star. “Keep getting up in the morning, keep working out in the gym, keep taking your vitamins, keep taking your prescribed meds, and keep moving,” he told AARP last year. “Keep moving. That is the secret to it all.”
He has credited that same commitment to staying active and working closely with his doctors as what keeps him going, so it’s not hard to see why a campaign about catching a serious disease early would resonate with someone who thinks about his health that way.
ATTR-CM develops when the heart becomes a dumping ground for damaged proteins. Normally, a protein called transthyretin travels through the body doing useful work, helping to carry vitamin A and other essential nutrients where they need to go. In people with ATTR-CM, that protein destabilizes, misfolds, and begins accumulating in the heart muscle rather than doing its job. Over time, those deposits make it harder and harder for the heart to function, and the disease can spread its effects to the nerves, the digestive system, and beyond. What makes it especially insidious is that its warning signs, shortness of breath, fatigue, leg swelling, carpal tunnel syndrome, irregular heartbeat, look almost identical to several other heart conditions. Many people spend years being treated for the wrong thing before anyone thinks to look for ATTR-CM, so it’s important to know what to look for, and especially know the right questions to ask in order to advocate for yourself.
“Rare health conditions like ATTR-CM can hide in plain sight, which is why awareness matters,” Freeman said. “And why I’m working with BridgeBio to encourage people who may have ATTR-CM to learn more and talk to their health care professionals.”
Black Americans carry a disproportionate burden from this disease (and many diseases), and the reason comes down to genetics. Research published in the Journal of the American Heart Association found that a genetic mutation called V122I, present almost exclusively in people of African descent, affects approximately 3 to 4 percent of Black Americans, which translates to roughly 1.5 million people. Many of them have no idea. And the V122I variant has been associated with a 47 percent increased risk of heart failure, with Black patients historically facing longer waits for diagnosis and less access to care once symptoms do appear.
Howard “H” White, a longtime sports marketing executive and fellow advocate in the campaign, lived it firsthand in a way that changed the course of his life. He developed carpal tunnel syndrome and was found to have an enlarged heart well before his ATTR-CM diagnosis finally came, and by that point the disease had already done significant damage. “By the time I found out, my condition had already progressed significantly,” White said, according to a BridgeBio press release. He has since founded the Howard “H” White Center for Cardiac Amyloidosis at Providence St. Vincent Medical Center, and is committed to making sure others get answers sooner than he did.
Freeman has one ask of anyone reading this. “If you have a health professional, talk to them,” he said. “If you don’t have one, get one. It’s never too late. Don’t assume your symptoms are just part of aging, as they can be shared with other heart conditions. The more you know, the better chance you have to take action early.”
As Black people, it seems like there is always something new to learn about what our bodies are up against, and rarely does the information feel like good news.
But awareness alone only goes so far. For those who do receive a diagnosis, Attruby (acoramidis), a prescription treatment approved for adults with ATTR-CM, showed a 50 percent reduction in cardiovascular-related hospitalizations at 30 months in clinical trials. So just know, there are options, and getting there starts with a conversation with your doctor.
“Sometimes speaking up about your health questions can make all the difference,” Freeman said.
More information, including a Doctor Discussion Guide, is available at Attruby.com.