Breaking the chains of sickle cell disease: patient urges policymakers for action and funding

OPINION – I was four years old when I had my worst sickle cell crisis. I almost died that day because my condition had been left untreated for so long. For years I was showing symptoms, but the doctors told my parents it was just growing pains – blind to the fact that I have Sickle Cell Disease.

From there on out, my childhood completely changed. The luxury of being a carefree kid turned into countless hospital visits and excruciating pain crises that would leave me bedridden for days on end. I was told I wouldn’t live past 18. Each day became an uphill battle against physical and emotional pain, but I at least had care and resources then.

That wasn’t the case when I became an adult. Comprehensive care for adults living with sickle cell was practically nonexistent. Without it, my sickle cell was left unmanaged and I would frequently end up in the ER. It was the last place I wanted to be.

Being treated as an adult in the ER is where I learned that Sickle Cell Disease is not just a medical battle; it is a fight against the stigma of having a “Black” disease and being labeled as a “drug seeker” for my invisible pain. I can think of countless instances when I felt ignored, dismissed, or even denied proper care because of the color of my skin. Instead of doctors treating my pain as a legitimate concern, they’ve questioned the severity of my symptoms and made assumptions based on stereotypes. The very place that was supposed to provide healing and comfort became a battleground where I had to fight for my pain to be taken seriously. This incident is not an isolated case but a reflection of the larger issue at hand.

It really felt like nothing would ever change for the better.

Until I learned about Networking California for Sickle Cell Care. Finally, state leaders were paying attention to us. In 2019, they committed $15 million to establish the first and only specialized adult Sickle Cell Disease network. Now, there are 12 clinics up and down the state where we can go to receive care in our local communities.

I know I speak for the 9,000 sickle cell warriors living in California when I say how grateful I am to finally have access to comprehensive and culturally competent care. My care team at UC Davis are the reason I’ve stayed out of the ER for the last four years. I can’t tell you what this means to me – I now feel like my life means something and that I’m here for a reason.

This network is the solution to finally moving the needle on health equity. Hospital emergency department visits reduced by 11%, hospitalizations reduced by 20%, and total length of hospitalization stays reduced by 50%. In the process, the state has saved hundreds of millions of dollars.

For my entire life, sickle cell has cast a significant shadow. Today, I am living and thriving. Next year, I’ll be a college graduate. Thousands of sickle cell warriors, just like me, have been able to reclaim their lives just by having access to local sickle cell care clinics. With a heavy heart and urgent plea, I ask our state leaders to prioritize funding for these historic Sickle Cell Disease clinics. We can’t let the network fall apart – it’s a lifeline for individuals like me who fight against the odds every single day. Together with our state leaders, we will continue to fight and ensure that California adults living with Sickle Cell Disease are neglected no more.

Celeste June Taylor, sickle cell warrior, lives in Sacramento.