By Helen Bezuneh,
Special to the AFRO
Pfizer partnered with Woods Adult Day Services to sponsor an event raising awareness of Transthyretin Amyloid Cardiomyopathy (ATTR-CM), an under-diagnosed condition that commonly leads to heart failure among African Americans and Afro-Caribbeans. Moderated by Wayne Pulliam, CEO and administrator of Woods Adult Day Services, the Voices of the Heart community event was held on Oct. 26 at Kappa Alpha Psi Youth and Community Center in Baltimore.
Cardiologist Albert J. Hicks delivered an informative presentation at the occasion, followed by some words from Velma Henderson, a retired registered nurse, whose family has been impacted by hereditary ATTR-CM (hATTR-CM)
“It is critical that our community have information on this condition and be empowered to advocate on their behalf when sharing information with their health care provider,” Roger Clark, a healthcare management executive who hosted the event, told the AFRO. “Knowing your family health history is key, and is important in guiding your clinician in developing a clear picture of your health and potential progression of disease. Because people of color and more specifically African Americans suffer disproportionately and have higher rates of morbidity and mortality across disease states, we need to be aggressive and proactive in how we manage our health.”
Pulliam spoke with the AFRO about the importance of spreading the word about ATTR-CM.
“I deal with seniors,” he said. “Heart disease and congestive heart failure are all part of my business. I’m very attuned to it. I know it, I see it, I see the end results of congestive heart failure, which in most cases is death. The difference with ATTR-CM is that you’re not looking at fifteen years or twenty years of congestive heart failure–you got a three year prognosis. You just shorten your life by not being informed. That’s what these forums really can do, help us live long and decrease our mortality rate in the Black community.”
According to a study conducted by professors Jeffrey Z. Shije, Maria A. B. Bautista and Carmen Smotherman, among the numerous documented pathologic mutations of the transthyretin (TTR) gene, the Val122Ile (V122I) mutation of hATTR-CM is observed in approximately 3–4 percent of African Americans. Wild-type ATTR-CM is not hereditary and most commonly occurs in caucasian males over the age of 65. Seeing as a late diagnosis can be deadly, Hicks encouraged those experiencing any symptoms of ATTR-CM to reach out to a cardiologist or their primary doctor. Unfortunately, however, ATTR-CM can easily mimic other diseases, making it hard to diagnose.
“[ATTR-CM] can cause many of the same types of symptoms that you see in heart failure,” said Hicks during his presentation. “Which include feeling very tired or weak, having shortness of breath, being fatigued or having an irregular heartbeat such as cardiac arrhythmia, as well as having swollen legs, feet and hands.”
“So you can have ruptured tendons or torn tendons,” he added to the list of symptoms. “You could have stomach or gut issues, like diarrhea, constipation, feeling sick or nauseated, a feeling of being full quickly. You can have pain or numbness that goes down your back or your legs. You can have eye problems, such as glaucoma. And again, none of these in isolation mean that you have amyloid, but can be associated with the symptoms, which make it hard to diagnose.”
“Numbness or tingling or pain in both hands or fingers is actually something that we see a lot in patients that we see with ATTR amyloidosis and can actually precede the condition affecting the heart by almost a decade,” he said. “This is called bilateral carpal tunnel syndrome and it’s one of the most common symptoms of ATTR-CM, so not just one side, it happens in both hands. Joint pain, such as in the hip or knee, numbness or tingling or pain in the toes.”
Hicks was also sure to stress that a patient is not at fault for developing hATTR-CM––it’s caused by a change in the TTR gene. ATTR-CM, he noted, can be traced back to the transatlantic slave trade.
“The ATTR mutation is actually found very heavy in West African areas, particularly countries that were associated with the slave trade,” he told the AFRO. “It’s a living legacy of slavery that we’re dealing with in this country. Having said that, ATTR amyloidosis is a very deadly condition if undiagnosed. It can have mortality of up to six months or a year if you’re not properly diagnosed or put on medications. We do have meds now that over the last five years have been shown to reduce peoples’ chances of dying, but if you’re not identified or if you’re identified too late, they’re not gonna be helpful.”
Racial bias plays a key role in the underdiagnosis of ATTR-CM among African Americans and Afro-Caribbeans, Hicks told the AFRO.
“Medical racism is a big thing,” he said. “Unfortunately, we find that in heart failure, bias plays a big role in underdiagnosing, misdiagnosing or mismanagement once diagnosed with the condition. We’re less likely to receive vital medications, less likely to receive vital equipment, we’re less likely to be referred to a higher level of care, we’re less likely to be seen by a cardiologist once we’re diagnosed.”
Speaking via Zoom, Henderson told the crowd about her family’s experience with hATTR-CM.
“I can honestly say that it has rocked my world,” she told the AFRO. “I’ve had three siblings, all of them younger than me, die over the past five years with this disease.”
“My brother was 65 at the time he was diagnosed, but he had symptoms for years that his healthcare team did not relate to hATTR-CM because not a lot was known about it,” she added. “There’s still not a lot known about it. So he got progressively more ill with joint pains, nerve pains, eventually an irregular heartbeat, heart failure. Because this disease often looks like regular heart failure, that’s what he was being treated for and it was not until he was almost at the end of his life that a biopsy was done at the Mayo Clinic and it was confirmed that he in fact had hATTR-CM. Because of the hereditary nature of it, they suggested that siblings and offspring be tested.”
Racial disparities in hATTR-CM diagnoses among Black folks highlight broader issues within healthcare, said Clark.
“Over my long career in healthcare I see how our communities and families have been disrupted/ravaged disproportionately by disease left unaddressed,” Clark told the AFRO. “Despite ranking among the wealthiest economies in the world per capita, the United States still has sizable disparities among its populations rooted in racial, social, economic and environmental factors.”
“My mentor, Senator Shirley Nathan-Pulliam (retired), began many of her talks with a quote from Martin Luther King, in a speech he gave in 1966,” he added. “It goes like this ‘Of all forms of inequality, injustice in health is the most shocking and inhuman.’ To turn the tide against disparities in healthcare and their devastating impact on our families and communities we have to be engaged; become empowered and confident when we engage the healthcare system and its practitioners. No longer can we sit by and fall victim to the ravages of disease that in many cases can be addressed successfully if we are proactive. Be aggressive in your pursuit of a quality life. Your family and the vitality of our communities depend on it.”
To learn more about how to identify ATTR-CM, Hicks suggests visiting yourheartsmessage.com/ask-your-cardiologist.