In early 2025, the National Minority Quality Forum (NMQF) hosted a Baltimore listening session to strengthen ATTR-CM awareness among community members through faith-based dialogue and clinical education. Held in a church setting, the discussion highlighted both the urgent need for education and the power of trusted community partnerships.

Dr. Jannae White, DNP, a nurse practitioner at the Heart Failure Center at St. Agnes Hospital in Baltimore, joined Bishop J.L. Carter, a longtime pastor of Ark Church and leader of NMQF’s Faith Health Alliance, to speak directly with community members about ATTR-CM.

Bridging Medicine and Ministry

Dr. White treats heart failure patients. For her, participating in the listening session was a natural extension of her work.

“My heart is in the community,” Dr. White explained. “We have to go where people are. It was an honor to hear directly from community members about their concerns and how we, as medical professionals, can help.”

Bishop Carter, who has led his congregation for 39 years, views health outreach as part of holistic ministry.

“Ministry is not just spiritual—it’s physical,” he said. “We are seeing too many strokes, too many heart attacks, too many heart problems. We have to address that.”

Though Baltimore is home to world-renowned institutions like Johns Hopkins, Bishop Carter acknowledged that historical distrust has prevented many community members from seeking care there. That reality makes the church’s role even more vital.

Why the Church Setting Matters

According to both leaders, the church remains one of the most trusted institutions in Black communities.

“For 39 years, this congregation has trusted me with their lives,” Bishop Carter said. “They listen to what I say. That’s why bringing this information into the church is so important.”

He pointed to the COVID-19 pandemic as an example. When vaccination rates lagged in Black and brown communities, state leaders turned to faith institutions. Churches mobilized quickly, and Maryland’s vaccination rates improved significantly as a result.

“If we could do that with COVID vaccines,” he added, “why can’t we address hypertension, diabetes, heart disease, and cancer in the same way?”

Dr. White agreed.

“The church is a trusted space. When healthcare providers collaborate with faith leaders, it shows the community that we care enough to meet them where they are.”

A Major Awareness Gap

When asked how much participants knew about ATTR-CM before the session, Bishop Carter was candid:

“Many didn’t even know this disease existed.”

Dr. White noted that the knowledge gap isn’t limited to the community.

“Even many healthcare providers are still learning about ATTR-CM. We’ve learned so much in the past six years, but there’s still a long way to go.”

ATTR-CM is often overlooked because its symptoms mimic more common conditions. Patients may be told their symptoms are due to diabetes, atrial fibrillation, or general heart failure without further investigation.

“It’s not the community’s fault,” Dr. White emphasized. “If a provider says, ‘This isn’t ATTR-CM,’ most patients will accept that. We, as healthcare professionals, need to do a better job recognizing and testing for it.”

The Misinformation Challenge

Both speakers addressed the growing influence of social media, artificial intelligence, and celebrity endorsements in spreading health misinformation.

Bishop Carter shared a troubling example of a community member who purchased ineffective supplements promoted online.

“There’s no regulation,” he said. “People are thirsting for education, but they’re often getting misinformation.”

Dr. White noted that misinformation creates a double-edged sword: some individuals believe everything they see online, while others distrust all information—including legitimate medical guidance.

That makes trusted partnerships even more important.

What Warning Signs Should People Watch For?

From a clinical perspective, Dr. White highlighted symptoms that should prompt further conversation with a healthcare provider:

• Bilateral carpal tunnel syndrome (numbness or tingling in both hands)
• Peripheral neuropathy (numbness or tingling in the feet)
• Spinal stenosis
• Gastrointestinal issues like unexplained diarrhea or constipation
• A diagnosis of heart failure along with the symptoms above

She also added additional cardiac warning signs:

• Irregular heart rhythms or atrial fibrillation
• Heart palpitations
• Swelling in the legs
• Shortness of breath during mild activity
• Difficulty climbing stairs or walking short distances

“If these symptoms are present,” she said, “it’s worth asking your provider whether ATTR-CM should be evaluated.”

The Health Literacy Gap

One of the most powerful takeaways from the listening session was the feeling among participants that they were not being heard.

“They feel dismissed,” Dr. White said. “We need to listen more and talk less. Even if we don’t have all the answers, we should explain the next steps clearly.”

She emphasized the importance of avoiding medical jargon.

Instead of saying, “You have transthyretin cardiac amyloidosis and need a technetium pyrophosphate scan,” providers should explain in plain language that abnormal proteins may be affecting the heart and that imaging tests can help determine what’s happening.

Clear communication builds trust. Dismissal erodes it.

The Future of Faith–Health Partnerships

When asked how healthcare organizations can better partner with faith leaders, Bishop Carter was honest.

“Some institutions may not want to share resources,” he said, referencing funding programs intended to support underserved communities.

Still, he remains optimistic about what is possible.

“The role of the church is unlimited,” he said. “We can serve spiritually on Sunday and address health needs during the week.”

Dr. White echoed that sentiment.

“We have to be intentional. Don’t make the community come to us. Bring the information to them.”

A Call for Continued Engagement

The listening session was not meant to be a one-time event.

“Even now,” Bishop Carter shared, “people are asking when Dr. White is coming back.”

Sustained engagement—not one-and-done outreach—is what builds lasting trust.

As both leaders made clear, improving outcomes for conditions like ATTR-CM will require more than clinical advances. It will require listening, partnership, cultural humility, and meeting communities where they already gather.

And in Baltimore, that gathering place is often the church.

For more information and free resources for ATTR-CM, visit AskAboutATTR.org. 

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