By London Knight
California lawmakers are in the middle of making critical budget decisions that could determine the future of care for thousands of people living with sickle cell disease (SCD). As lawmakers look for places to cut, programs that support Medi-Cal patients, safety-net services, and the state’s first and only network of specialized sickle cell disease clients are on the line. For a community that has already endured generations of neglect, losing momentum now would be devastating.
I know what’s at stake because I live with this disease every day.
From the outside, my life might look picture-perfect. I travel the world walking runways, shooting campaigns, and filming music videos. I’ve been featured in magazines like Elle and Marie Claire, walked in the Johannesburg Mercedes-Benz Fashion Week, and modeled for brands like NYX and BEIS.
But behind the lights and cameras, I live with a disease people can’t see and few understand.
I was diagnosed with sickle cell disease at just three months old. Sickle cell disease is an inherited blood disorder that makes red blood cells change shape leading to serious health complications, organ damage, and unimaginable pain. When my mother received my diagnosis, she was told I might not live long. She took photos constantly; afraid she’d lose me. Neither of us could have imagined those early photos would foreshadow a life spent in front of the camera.
When I entered the modeling industry, I kept my condition private. I wanted to be known for my work ethic and talent, not my illness. But after a severe sickle cell crisis, I shared my experience on social media, hoping to help my followers understand what life with SCD is really like. My agent warned me to not speak publicly about it, saying clients might see me as “unreliable” or “incapable.” That moment was heartbreaking. My health isn’t a weakness. And hiding it only reinforces the stigma that surrounds chronic illness.
Speaking up changed everything. Once I stopped hiding, more doors opened. Brands appreciated my authenticity. More importantly, I began connecting with children and teenagers who saw themselves in my story, those who have faced the same ups and downs of this disease of often missing school, struggling to explain their condition, and being treated as fragile or incapable. After all, SCD is hard enough for most adults to grasp, for young people, it can feel impossible. I want them to know their dreams are still possible.
Sickle cell complications have long prevented many patients from reaching adulthood, cutting lives short. Despite affecting nearly 100,000 Americans, mostly Black and Hispanic, it remains deeply misunderstood. Many of us have been dismissed in emergency rooms, labeled as drug seekers, left to advocate for care through unbearable pain, and even having to explain to doctors how to care for us, something no patient should have to do. This stigma, coupled with historically underfunded research and limited treatment options, has left the sickle cell community chronically underserved.
California is trying to change that. With State support, Networking California for Sickle Cell Care (NCSCC) has built a network of 12 specialized sickle cell clinics across the state in areas with the highest needs, including Los Angeles County. The flagship center MLK Jr. Outpatient Center- Jeffrey Smith Adult Sickle Cell Clinic, along with UCLA Community Clinics, and Harbor-UCLA Medical Center, are there to serve the approximately 2,100 adults in Los Angeles living with SCD. These centers are more than medical facilities; they are lifelines, offering expert care, pain management, mental health support, and a sense of belonging for people who have spent their lives navigating a health care system that misunderstands them.
But their progress is fragile.
Proposed Medicaid cuts, expiring Affordable Care Act premium tax credits, and withheld of SNAP benefits could reverse hard-won progress. If California reduces support now, clinics could be forced to scale back, and patients might lose access to specialists who understand their condition. For communities already fighting for care, every policy decision matters.
And health care is only one part of the picture. Managing SCD means facing not just constant pain, but also the emotional toll that comes with it. Many of us search for spaces that acknowledge this fuller reality—spaces that help us manage the emotional and spiritual sides of the disease, not just the medical ones.
I rely on journaling, meditating, eating well, resting when I need to, and most importantly listening to my intuition. Some days that can mean missing an event, turning down a job, or cancelling plans, not out of desire but out of necessity. Pushing though can have dangerous consequences and acknowledging my limits is part of how I thrive despite my condition.
Every runway I walk and every photoshoot I complete is a reminder of what’s possible. I think of the little girl my mother feared she might lose, and how many adults and children today still face those same fears simply because the system doesn’t prioritize their care.
Lawmakers must protect, and strengthen, funding for Medi-Cal and the sickle cell clinic network. These investments save lives.
My hope is that by continuing to share my story, every child or young sickle cell warrior who dreams beyond their diagnosis will see SCD not as a limitation and their possibilities are endless. But they can only thrive if California continues to invest in the care they deserve.