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Living with Heart Sarcoidosis

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Denise Duncan, who shared her story of living with sarcoidosis with the American Heart Association said her condition actually began with a diagnosis of congestive heart failure.

“I was diagnosed with sarcoidosis in my lungs in 2001 and was in bad shape and a bad stage.  I still get choked up thinking back.  I had close friends at a local funeral home who had heard about this sickness, and they did some checking along with the doctor.  I was told that sarcoidosis moves around and about three years ago it attacked my heart on the left bottom side. Anything this sickness touches, it hardens and can leave my heart and travel to another part of my body. My heart, however, is messed up forever,” Duncan said.

The exact cause of sarcoidosis is not known; however, it does appear in some families and may be linked to a genetic susceptibility.  Other research suggests that its prevalence among African Americans and Western Europeans (Scandinavian, German, and Irish) points to its origin as a mixture of genetic predisposition and environmental cues.

Because sarcoidosis can escape diagnosis or be mistaken for several other diseases, we can only guess at how many people are affected. Sarcoidosis mainly affects people between 20 to 40 years of age. White women are just as likely as White men to get sarcoidosis, but the African-American female gets sarcoidosis twice as often as African-American males.

A review of African-American sarcoidosis patients by the American Lung Association found that 90 percent had at least one other disease, including: high blood pressure or hypertension (39 percent), diabetes mellitus (19 percent), anemia (19 percent), asthma (15 percent), gastro-esophageal reflux disease, (15 percent), depression (13 percent) and heart failure (10 percent).

Cardiac sarcoidosis may also cause the heart to become enlarged, a condition known as cor pulmonale  that can lead to heart failure if left untreated. A complete heart blockage or a heart rate below 40 beats per minute, palpitation, irregular heart rhythm, and dizziness are some of the major symptoms, but many sarcoidosis patients with heart involvement are symptom free.

The prognosis for surviving sarcoidosis is primarily dependent upon the degree of lung and cardiac involvement, and the prognosis changes substantially in patients with symptomatic cardiac sarcoidosis. Cardiac involvement is the second leading cause of death and accounts for up to 25 percent of disease-associated mortality, due primarily to progressive heart failure.

Sarcoidosis affects about 135,000 Americans, occurring nearly 10 times as frequently in Blacks as in Whites.

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Activism

COMMENTARY: The Biases We Don’t See — Preventing AI-Driven Inequality in Health Care

For decades, medicine promoted false assumptions about Black bodies. Black patients were told they had lower lung capacity, and medical devices adjusted their results accordingly. That practice was not broadly reversed until 2021. Up until 2022, a common medical formula used to measure how well a person’s kidneys were working automatically gave Black patients a higher score simply because they were Black. On paper, this made their kidneys appear healthier than they truly were. As a result, kidney disease was sometimes detected later in Black patients, delaying critical treatment and referrals.

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Sen. Akilah Weber Pierson, M.D (D-San Diego). File photo. Sen. Akilah Weber Pierson, M.D (D-San Diego). File photo.
Sen. Akilah Weber Pierson, M.D (D-San Diego). File photo.

By Sen. Akilah Weber Pierson, M.D., Special to California Black Media Partners 

Technology is sold to us as neutral, objective, and free of human flaws. We are told that computers remove emotion, bias, and error from decision-making. But for many Black families, lived experience tells a different story. When technology is trained on biased systems, it reflects those same biases and silently carries them forward.

We have seen this happen across multiple industries. Facial recognition software has misidentified Black faces at far higher rates than White faces, leading to wrongful police encounters and arrests. Automated hiring systems have filtered out applicants with traditionally Black names because past hiring data reflected discriminatory patterns. Financial algorithms have denied loans or offered worse terms to Black borrowers based on zip codes and historical inequities, rather than individual creditworthiness. These systems did not become biased on their own. They were trained on biased data.

Healthcare is not immune.

For decades, medicine promoted false assumptions about Black bodies. Black patients were told they had lower lung capacity, and medical devices adjusted their results accordingly. That practice was not broadly reversed until 2021. Up until 2022, a common medical formula used to measure how well a person’s kidneys were working automatically gave Black patients a higher score simply because they were Black. On paper, this made their kidneys appear healthier than they truly were. As a result, kidney disease was sometimes detected later in Black patients, delaying critical treatment and referrals.

These biases were not limited to software or medical devices. Dangerous myths persisted that Black people feel less pain, contributing to undertreatment and delayed care. These beliefs were embedded in modern training and practice, not distant history. Those assumptions shaped the data that now feeds medical technology. When biased clinical practices form the basis of algorithms, the risk is not hypothetical. The bias can be learned, automated, and scaled.

For us in the Black community, this creates understandable fear and mistrust. Many families already carry generational memories of medical discrimination, from higher maternal mortality to lower life expectancy to being dismissed or unheard in clinical settings. Adding AI biases could make our community even more apprehensive about the healthcare system.

As a physician, I know how much trust patients place in the healthcare system during their most vulnerable moments. As a Black woman, I understand how bias can shape experiences in ways that are often invisible to those who do not live them. As a mother of two Black children, I think constantly about the systems that will shape their health and well-being. As a legislator, I believe it is our responsibility to confront emerging risks before they become widespread harm.

That is why I am the author of Senate Bill (SB) 503. This bill aims to regulate the use of artificial intelligence in healthcare by requiring developers and users of AI systems to identify, mitigate, and monitor biased impacts in their outputs to reduce racial and other disparities in clinical decision-making and patient care.

Currently under consideration in the State Assembly, SB 503 was not written to slow innovation. In fact, I encourage it. But it is our duty must ensure that every tool we in the healthcare field helps patients rather than harms them.

The health of our families depends on it.

About the Author 

Sen. Akilah Weber Pierson (D–San Diego) is a physician and public health advocate representing California’s 39th Senate District.

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Activism

As California Hits Aging Milestone, State Releases Its Fifth Master Plan for Aging

“California’s Master Plan for Aging started a powerful movement that is shaping the future of aging in our state for generations to come,” Gov. Gavin Newsom said in a statement, calling the initiative a “future-forward” model delivering real results for older adults, people with disabilities, and their families.

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By Bo Tefu, California Black Media  

On Jan. 27, California released its Fifth Master Plan for Aging Annual Report,titled “Focusing on What Matters Most,” outlining the state’s progress and priorities as its population rapidly grows older.

The report, issued by the California Health and Human Services Agency (CalHHS), provides updates on the Master Plan for Aging’s “Five Bold Goals”: housing, health, inclusion and equity, caregiving, and affordability.

The report comes as Californians aged 60 and older now outnumber those under 18 for the first time, a demographic shift expected to accelerate over the next decade.

“California’s Master Plan for Aging started a powerful movement that is shaping the future of aging in our state for generations to come,” Gov. Gavin Newsom said in a statement, calling the initiative a “future-forward” model delivering real results for older adults, people with disabilities, and their families.

Launched in 2021, the Master Plan for Aging takes a “whole-of- government” and “whole-of-society” approach, coordinating state agencies, local governments, community organizations, and private partners. The annual report highlights significant milestones, including more than 100 California communities joining AARP’s Age-Friendly Network and $4 million in state funding awarded to local organizations to develop aging and disability action plans in 30 communities statewide.

The report also underscores California’s leadership at the national level, noting that dozens of states have followed its example and that federal legislation inspired by the plan was reintroduced in the U.S. Senate in December 2025.

CalHHS Secretary Kim Johnson emphasized the plan’s focus on equity and resilience amid ongoing challenges.

“The Master Plan for Aging continues to provide a vision, a focus, and a platform for collaboration,” Johnson said. “Equity is at the center of all that we do.”

Looking ahead, the report notes that by 2030, one in four Californians will be age 60 or older, positioning the Master Plan for Aging as a central framework for meeting the state’s long-term social, economic, and health needs.

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Candidates Vying for Governor’s Seat Debate at Ruth Williams–Bayview Opera House in San Francisco

The gubernatorial debate participants included Antonio Villaraigosa, former Los Angeles mayor; Matt Mahan, San Jose mayor; Betty Yee, former California state controller; Xavier Becerra, former U.S. Secretary of Health and Human Services, and attorney general of California; Steve Hilton, political commentator and political adviser; Tom Steyer, entrepreneur, and Tony Thurmond, California’s superintendent of public instruction.

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The gubernatorial debate was hosted by KTVU’s Greg Lee, KTTV’s Marla Tellez and KTVU’s Andre Senior. The candidates are (l.-r.): Xavier Becerra, Steve Hilton, Matt Mahan, Tom Steyer, Tony Thurmond, Antonio Villaraigosa, and Betty Yee.
The gubernatorial debate was hosted by KTVU’s Greg Lee, KTTV’s Marla Tellez and KTVU’s Andre Senior. The candidates are (l.-r.): Xavier Becerra, Steve Hilton, Matt Mahan, Tom Steyer, Tony Thurmond, Antonio Villaraigosa, and Betty Yee.

By Carla Thomas 

 

On Tuesday, Feb. 3, seven candidates took the stage at the historic Ruth Williams–Bayview Opera House in San Francisco for the gubernatorial debate, hosted by the Black Action Alliance (BAA) in partnership with KTVU and sister station KTTV Fox 11 in Los Angeles.

 

For many voters, it marked a first opportunity to hear directly from several candidates seeking to lead the nation’s most populous state.

 

The gubernatorial debate participants included Antonio Villaraigosa, former Los Angeles mayor; Matt Mahan, San Jose mayor; Betty Yee, former California state controller; Xavier Becerra, former U.S. Secretary of Health and Human Services, and attorney general of California; Steve Hilton, political commentator and political adviser; Tom Steyer, entrepreneur, and Tony Thurmond, California’s superintendent of public instruction.

 

Crucial topics and issues addressed throughout the debate included housing, crime, immigration, climate change, health care and homelessness.

 

The debate was moderated by KTVU political reporter Greg Lee alongside KTVU’s Andre Senior and KTTV Fox 11’s Marla Tellez.

 

Candidates also addressed inflation and the rising costs across the state, impacting everything from groceries to childcare and health care. 

 

Thurmond vowed to generate 2.3 million units of housing by placing 12 units on each parcel of available land in the 58 counties of California. Steyer agreed that billionaires should pay their fair share of taxes.

 

Hilton wanted to cut taxes, help working-class families, and end the Democrats “climate crusade and insane regulations.”

 

Yee offered a more transparent governmental approach with accountability, given the state’s debt.

 

Gonzalez said, “This debate was a great way to see who has great ideas and who has substance.”

 

“It’s important to have the debate within a community that requires the most,” said business leader Linda Fadekye.

 

Attendees included State Controller Malia Cohen, representatives of the National Coalition of 100 Black Women, the National Coalition of 100 Black Men, the San Francisco African American Chamber of Commerce, and Black Women Organized for Political Action, among others. 

 

Event host, the Black Action Alliance (BAA) was established to amplify the voices of the Bay Area’s Black community, whose perspectives have too often been overlooked in politics and public policy.  

 

Loren Taylor, CEO of BAA, said it was important to bring the event to the Bayview in San Francisco and shared his organization’s mission.

 

“The Black Action Alliance (BAA) stands for practical, community-driven solutions that strengthen public safety, address homelessness, support small businesses, expand affordable housing, and ensure access to quality education—issues at the heart of the Black experience in the Bay Area,” said Taylor. 

 

California’s primary election will take place on June 2 and the general election will take place on Nov. 3. 

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