As Black Families Fight for Sickle Cell Care, Trump’s Healthcare Rollbacks Just Created a Whole New Struggle

The sickle cell community has never had the luxury of waiting for America to catch up. For generations, Black families have fought to convince doctors their pain is real, demanded research for a disease long ignored and built support systems where institutions fell short. Now, as the Trump administration proposes healthcare rollbacks that advocates say threaten insurance coverage and critical medical funding, they’re preparing for yet another battle.

… Not because they want to, but because they’ve learned survival often depends on becoming their own strongest advocates. With federal regulators accepting public comments only through the end of the month, many say the time to act is now.

For families navigating sickle cell disease–a genetic blood disorder that disproportionately affects Black Americans, according to the Sickle Cell Disease Association of America–the stakes are especially high.

For Ayana Johnson, a college student, entrepreneur, Miss Virginia’s Outstanding Teen 2023 and lifelong sickle cell warrior, the policy debate is deeply personal.

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“The stigmatization, for sure,” Johnson told The Root. “I have SC sickle cell, which is the perfect example of how much I’m stereotyped to feel like, ‘Oh, it’s just not that bad,’ or ‘SS is more severe.’ That’s one of the biggest misconceptions.”

She says those assumptions extend beyond medicine.

“Another misconception is that we’re not hardworking–that we’re lazy,” she explained. “I encourage everybody to understand that warriors have the capability to do anything.”

Johnson credits her family’s support with teaching her how to advocate for herself from an early age, a skill she says became essential as she transitioned from pediatric to adult healthcare.

“There’s a lot of unique and complex things that go into making sure healthcare providers can take care of us properly,” she told us. “I’ve always been trained to advocate for myself.”

That self-advocacy has become increasingly important as uncertainty surrounds healthcare funding and research.

“There has been more of a push for research in recent years,” Johnson said. “But with this current administration, research practices for sickle cell disease have been frozen. This disease has been around for over a century, and there should be a lot more progress than there currently is.”

Now, a coalition of 48 patient advocacy organizations is urging the public to oppose proposed federal healthcare changes they argue would strip coverage from millions of Americans living with chronic illnesses.

Johnson worries proposed Medicaid reductions, insurance changes and rising healthcare costs will leave patients without access to lifesaving treatment.

“It’s prohibiting a lot of sickle cell warriors from having simple things like access to medication, which should be something very simple that all sickle cell warriors deserve,” Johnson says. “It’s been extremely scary for myself and other warriors to watch how health organizations are not continuing to recognize the urgency surrounding sickle cell disease.”

While sickle cell disproportionately affects Black Americans, Johnson wanted to remind folks that the disease crosses racial and ethnic lines.

“Sickle cell can, will, and has affected Americans from all walks of life,” she said. “It’s imperative that we continue to understand that.”

She also encouraged patients to seek supportive therapies alongside traditional medical care when appropriate.

“I’ve used acupuncture, massage therapy, and other holistic therapies that help enhance my quality of life,” Johnson said. “But we also have to continue advocating for one another and pushing legislators to do what’s right.”

The fight continues to be about living with sickle cell disease in a healthcare system that too often minimizes pain. For Johnson’s mother, Hermionne Johnson, the battle has been watching that system fail her daughter despite knowing firsthand how it is supposed to work.

As a registered nurse, caregiver, CEO and co-founder of Ayana’s Hope Cells, Hermionne says Ayana’s diagnosis fueled a mission to challenge the inequities facing families like theirs.

“Before Ayana’s diagnosis, I believed medicine was fundamentally fair,” she told us. “Then newborn screening changed everything.”

As both a healthcare professional and caregiver, Hermionne says she learned that information alone cannot overcome systemic barriers.

“I discovered that families had to fight to be believed,” she said. “That pain was questioned before it was treated.”

“Eventually I realized something painful,” she continued. “Not every misunderstanding is caused by a lack of information. Sometimes it’s bias. Sometimes it’s culture. Sometimes it’s systems that were never designed to hear families like ours.”

Those realities shape how she views current healthcare policy debates.

“I don’t believe caregivers have the luxury of surrendering to despair,” she said. “Every time a funding stream disappears, every time a research program is reduced, every time a public health office closes, families like mine don’t get to pause. Sickle cell disease doesn’t wait for the next election cycle.”

Emphasizing that while Black families have historically built networks to compensate for gaps in healthcare–from nonprofit organizations to blood drives and legislative advocacy– the advocate added that resilience should never be interpreted as a reason to reduce public investment.

She also rejected the idea that hope is passive.

“Hope isn’t optimism,” she says. “Hope is disciplined action despite uncertainty.”

That philosophy informs her call to readers.

“Stop believing that healthcare is somebody else’s issue,” the mother said. “Healthcare policy determines who receives research funding, who gets diagnosed, who receives pain medication, which hospitals stay open, and who lives longer.”

She urges people to vote in every election, learn who serves on state health committees, support sickle cell organizations throughout the year, donate blood, volunteer and contact legislators.

“Policy isn’t paperwork,” she added. “Policy eventually becomes someone’s prognosis.”

Advocates say policy deadlines will ithe outcome could have lasting consequences for thousands of families living with sickle cell disease. Their message is clear: this isn’t simply a political debate. It’s about whether patients with chronic illnesses can continue accessing the care, research and treatment they need to survive.

For the Johnson family– and countless others– that fight continues long after the headlines fade.