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Lupus Disproportionately Affects Black Women

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$32 Billion in Funding Could Raise Awareness

By Shantella Y. Sherman
Special to the NNPA from the Afro-American Newspaper

Lupus, or systemic lupus erythematosus, is a chronic and often debilitating autoimmune disease that impacts more than 1.5 million Americans. Characterized by intense fatigue, exhaustion, joint pain, and memory problems, lupus is three times more common among the Black female populations than any other group. And, while lupus affects women in their childbearing years, the onset of lupus in Black women is earlier and more likely to develop into severe organ problems.

Among health officials lupus has been termed everything from “unpredictable,” to “misunderstood,” and is difficult to diagnose. Additionally, lupus remains a challenge to treat, according to the Lupus Foundation of America, existing outside of the national health dialogue with few awareness efforts in place.  The exact cause of lupus is not known, though researchers believe that there are hereditary genetic markers that keep the immune system from functioning properly.  Additionally, a number of factors can trigger lupus attacks, including viral infections, such as mononucleosis.

No two cases of lupus are alike. Some people develop kidney problems, for example, while others get premature heart disease, and others suffer from strokes or develop lung inflammation.

In recent weeks, lupus activists from around the country visited Capitol Hill, where they successfully lobbied for more than $32 billion in research funding for the National Institutes of Health and to elevate lupus on the nation’s health care agenda.  The funding would not only aid researchers in studying the disease, but also supply a collective guideline for diagnosis, treatment, and outreach that could be utilized by professionals and patients alike.

“Our research has shown that, on average, individuals with lupus suffer symptoms for four or more years and visit three or more doctors before they receive a diagnosis of lupus,” said Sandra C. Raymond, president and CEO of the Lupus Foundation of America. “I’m pleased to see a collaborative effort among advocacy groups, researchers, physicians and leaders in public health and government to provide critical tools that will help reduce the time to diagnosis and improve medical care for people with lupus.”

Dr. S. Sam Lim, associate professor in the Division of Rheumatology at Emory University School of Medicine in Atlanta, Ga., found, in a study of Black women diagnosed with lupus, that those impacted ranged in age from 15-44 and exhibited a range of symptoms from a skin rash to kidney (renal) failure.

“These are young women in the prime of their careers, family, and fertility. This means a severely compromised future, with a disease that waxes and wanes, affecting every aspect of daily living for the rest of their lives,” Lim said. “These data directly reflect the burden of lupus in our community. These are mostly young, minority women who are going to dialysis instead of working and caring for their families.”

And despite the widespread prevalence of lupus, medical research has remained underfunded relative to its scope and devastation making the one in every 250 Black women diagnosed particularly vulnerable to misdiagnoses. Scientists are baffled as to why.  Even with the famous 10-year Lupus in Minorities: Nature Versus Nurture (LUMINA) study, which tracked a sizeable multi-ethnic, multi-regional, and multi-institutional group of lupus sufferers, no consistent cause for the racial disparity was found.  Genetic and ethnic factors were noted, however, to be more important than socioeconomic ones in influencing the disease’s growth.

Lim said several organizations, including the National Lupus Patient Registry, provide tremendous resources to those impacted by the disease. He said that 20 years ago, only 40 percent of people with lupus lived more than three years following diagnosis, with current therapies, most now live a normal lifespan.

“We have to build the next line of research projects to determine the additional ‘whys’ of the disproportionate rates in minorities and poorer outcomes as well as other important questions involving the role of the immune system and genetics,” Lim said.

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Activism

OPINION: Your Voice and Vote Impact the Quality of Your Health Care

One of the most dangerous developments we’re seeing now? Deep federal cuts are being proposed to Medicaid, the life-saving health insurance program that covers nearly 80 million lower-income individuals nationwide. That is approximately 15 million Californians and about 1 million of the state’s nearly 3 million Black Californians who are at risk of losing their healthcare. 

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Rhonda M. Smith.
Rhonda M. Smith.

By Rhonda M. Smith, Special to California Black Media Partners

Shortly after last year’s election, I hopped into a Lyft and struck up a conversation with the driver. As we talked, the topic inevitably turned to politics. He confidently told me that he didn’t vote — not because he supported Donald Trump, but because he didn’t like Kamala Harris’ résumé. When I asked what exactly he didn’t like, he couldn’t specifically articulate his dislike or point to anything specific. In his words, he “just didn’t like her résumé.”

That moment really hit hard for me. As a Black woman, I’ve lived through enough election cycles to recognize how often uncertainty, misinformation, or political apathy keep people from voting, especially Black voters whose voices are historically left out of the conversation and whose health, economic security, and opportunities are directly impacted by the individual elected to office, and the legislative branches and political parties that push forth their agenda.

That conversation with the Lyft driver reflects a troubling surge in fear-driven politics across our country. We’ve seen White House executive orders gut federal programs meant to help our most vulnerable populations and policies that systematically exclude or harm Black and underserved communities.

One of the most dangerous developments we’re seeing now? Deep federal cuts are being proposed to Medicaid, the life-saving health insurance program that covers nearly 80 million lower-income individuals nationwide. That is approximately 15 million Californians and about 1 million of the state’s nearly 3 million Black Californians who are at risk of losing their healthcare.

Medicaid, called Medi-Cal in California, doesn’t just cover care. It protects individuals and families from medical debt, keeps rural hospitals open, creates jobs, and helps our communities thrive. Simply put; Medicaid is a lifeline for 1 in 5 Black Americans. For many, it’s the only thing standing between them and a medical emergency they can’t afford, especially with the skyrocketing costs of health care. The proposed cuts mean up to 7.2 million Black Americans could lose their healthcare coverage, making it harder for them to receive timely, life-saving care. Cuts to Medicaid would also result in fewer prenatal visits, delayed cancer screenings, unfilled prescriptions, and closures of community clinics. When healthcare is inaccessible or unaffordable, it doesn’t just harm individuals, it weakens entire communities and widens inequities.

The reality is Black Americans already face disproportionately higher rates of poorer health outcomes. Our life expectancy is nearly five years shorter in comparison to White Americans. Black pregnant people are 3.6 times more likely to die during pregnancy or postpartum than their white counterparts.

These policies don’t happen in a vacuum. They are determined by who holds power and who shows up to vote. Showing up amplifies our voices. Taking action and exercising our right to vote is how we express our power.

I urge you to start today. Call your representatives, on both sides of the aisle, and demand they protect Medicaid (Medi-Cal), the Affordable Care Act (Covered CA), and access to food assistance programs, maternal health resources, mental health services, and protect our basic freedoms and human rights. Stay informed, talk to your neighbors and register to vote.

About the Author

Rhonda M. Smith is the Executive Director of the California Black Health Network, a statewide nonprofit dedicated to advancing health equity for all Black Californians.

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Activism

OPINION: Supreme Court Case Highlights Clash Between Parental Rights and Progressive Indoctrination

At the center of this controversy are some parents from Montgomery County in Maryland, who assert a fundamental principle: the right to shield their children from exposure to sexual content that is inappropriate for their age, while also steering their moral and ethical upbringing in alignment with their faith. The local school board decided to introduce a curriculum that includes LGBTQ+ themes — often embracing controversial discussions of human sexuality and gender identity.

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Craig J. DeLuz. Courtesy of Craig J. DeLuz.
Craig J. DeLuz. Courtesy of Craig J. DeLuz.

By Craig J. DeLuz, Special to California Black Media Partners

In America’s schools, the tension between parental rights and learning curricula has created a contentious battlefield.

In this debate, it is essential to recognize that parents are, first and foremost, their children’s primary educators. When they send their children to school — public or private — they do not surrender their rights or responsibilities. Yet, the education establishment has been increasingly encroaching on this vital paradigm.

A case recently argued before the Supreme Court regarding Maryland parents’ rights to opt out of lessons that infringe upon their religious beliefs epitomizes this growing conflict. This case, Mahmoud v. Taylor, is not simply about retreating from progressive educational mandates. It is fundamentally a defense of First Amendment rights, a defense of parents’ rights to be parents.

At the center of this controversy are some parents from Montgomery County in Maryland, who assert a fundamental principle: the right to shield their children from exposure to sexual content that is inappropriate for their age, while also steering their moral and ethical upbringing in alignment with their faith. The local school board decided to introduce a curriculum that includes LGBTQ+ themes, often embracing controversial discussions of human sexuality and gender identity. The parents argue that the subject matter is age-inappropriate, and the school board does not give parents the option to withdraw their children when those lessons are taught.

This case raises profound questions about the role of public education in a democratic society. In their fervent quest for inclusivity, some educators seem to have overlooked an essential truth: that the promotion of inclusivity should never infringe upon parental rights and the deeply held convictions that guide families of different faith backgrounds.

This matter goes well beyond mere exposure. It veers into indoctrination when children are repeatedly confronted with concepts that clash with their family values. 

“I don’t think anybody can read that and say: well, this is just telling children that there are occasions when men marry other men,” noted Justice Samuel Alito. “It has a clear moral message, and it may be a good message. It’s just a message that a lot of religious people disagree with.”

Justice Amy Coney Barrett raised a crucial point, noting that it is one thing to merely expose students to diverse ideas; it is quite another to present certain viewpoints as indisputable truths. By framing an ideology with the certainty of “this is the right view of the world,” educators risk indoctrination rather than enlightenment. This distinction is not merely academic; it speaks to the very essence of cultivating a truly informed citizenry.

Even Justice Elena Kagan expressed concern regarding the exposure of young children to certain materials in Montgomery County.

“I, too, was struck by these young kids’ picture books and, on matters concerning sexuality, I suspect there are a lot of non-religious parents who weren’t all that thrilled about this,” she said.

Justice John Roberts aptly questioned the practicality of expecting young children to compartmentalize their beliefs in the classroom.

“It is unreasonable to expect five-year-olds, still forming their worldviews, to reconcile lessons that conflict fundamentally with the teachings they receive at home,” he said.

As was noted in my previous commentary, “The Hidden Truth In The Battle Over Books In American Schools”, what lies at the heart of these debates is a moral disconnect between the values held by the majority of Americans and those promoted by the educational establishment. While the majority rightly argue that material containing controversial content of a sexual nature should have no place in our children’s classrooms, the education establishment continues to tout the necessity of exposing children to such content under the guise of inclusivity. This disregards the legitimate values held by the wider community.

Highlighted in this case that is before the Supreme Court is a crucial truth: parents must resolutely maintain their right to direct their children’s education, according to their values. This struggle is not simply a skirmish; it reflects a broader movement aimed at reshaping education by privileging a state-sanctioned narrative while marginalizing dissenting voices.

It is imperative that we assert, without hesitation, that parents are — and must remain — the primary educators of their children.

When parents enroll a child in a school, it should in no way be interpreted as a relinquishment of parental authority or the moral guidance essential to their upbringing. We must stand firm in defending parental rights against the encroaching ideologies of the education establishment.

About the Author

Craig J. DeLuz has almost 30 years of experience in public policy and advocacy. He has served as a member of The Robla School District Board of Trustees for over 20 years. He also currently hosts a daily news and commentary show called “The RUNDOWN.” You can follow him on X at @CraigDeLuz.

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Activism

California Observes Third Annual Black Health Advocacy Week

On May 4, 2023, the California Assembly unanimously passed ACR 53, enacting BHEAW every first week of May. “The life expectancy at birth for Black Californians is 76.2 years of age, which is five years shorter than the state average and the lowest life expectancy of all racial and ethnic groups in California,” said Weber in a statement.

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Dr. Akilah Weber Pierson. File photo.
Dr. Akilah Weber Pierson. File photo.

By Bo Tefu, California Black Media

California’s third annual Black Health Equity Advocacy Week (BHEAW), observed from May 5-9, reaffirmed the commitment of the state and advocates to address systemic health disparities affecting Black communities.

Assemblymember Akilah Weber (D-San Diego), who is a medical doctor and chair of the California Legislative Black Caucus (CLBC), authored the resolution that created BHEAW — the first statewide initiative of its kind focused on advancing Black health equity.

On May 4, 2023, the California Assembly unanimously passed ACR 53, enacting BHEAW every first week of May.

“The life expectancy at birth for Black Californians is 76.2 years of age, which is five years shorter than the state average and the lowest life expectancy of all racial and ethnic groups in California,” said Weber in a statement.

“This disparity is a stark reminder of the systemic and institutional factors that contribute to health inequities in communities of color,” she added.

The California Black Health Network (CBHN) led this year’s events, combining advocacy, training, and public engagement to amplify the urgency of closing health gaps for Black Californians.

The theme of this year’s observance was “We’ve Got the Power.”

“CBHN is calling on our community to step up, speak out, and get involved. Increasing the participation of Black Californians in policymaking — across the health industry and public sector — is one of the most powerful ways we can drive change and save lives,” reads a message from the organization promoting this year’s BHEAW.

“Policy change is within your power and this week we’re in Sacramento with our Health Equity Advocacy Training (HEAT) Program Cohort 3 to uplift issues impacting our community and advocate to help shape the policies and programs that will improve the health of current and future generations of Black Californians,” the message continued.

Focused on public awareness and information, this year’s BHEAW included a social media campaign, a rally and training program with vital information on medical conditions that have a disproportionate impact on Black Californians, including maternal mortality, mental health, diabetes, cancer and more.

For more information on the resolution or to join the movement, visit CBHN’s official site, www.cablackhealthnetwork.org.

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