I’m just 24 years old, but I have already endured a lifetime of struggle with a rare disease — and California’s fractured health data system has made it worse. 

While I may look healthy to the rest of the world, I silently suffer from a rare disease called juvenile dermatomyositis (JDM), which is an autoimmune disorder that impacts 3,000 to 5,000 children in the United States. For children and young adults like myself who have JDM, simple things like walking and playing with friends is exhausting. Because of JDM, I developed arthritis in my knees and hips, making every step I take difficult. 

My treatment, which includes multiple rounds of chemotherapy, necessitates appointments with many different specialists. Unfortunately, here in California moving between specialists usually means being forced to manage your own healthcare records — because no universal electronic data system exists in our state.

As my disease has progressed, so too have the number of doctor’s visits, treatments, and medications I have had to keep track of, while communication among my doctors is largely nonexistent. 

At 15 years old, I needed my health care providers to help me heal, but vital information that should have been readily available to them was and continues to be tangled in red tape. 

California has a clear path to writing this wrong and improving patient and provider access to health data: creating a statewide health information exchange (HIE) network. An HIE would be a single system in which all data for every California patient would be stored; all health insurance plans, hospitals, and health networks would be required to participate. The system could be under strict security and privacy guidelines that meet or surpass HIPAA requirements, to ensure every patient’s data was available only to them, and their providers who need to access it.

Other states such as Nebraska, Colorado, and Michigan already have versions of a statewide HIE network. It’s time for California to prioritize patients’ rights and well-being and join them. 

I’m proud to live in California, where our leaders talk valiantly about providing high-quality, equitable healthcare for all 40 million people who live here. And while it may seem insignificant, the health data vacuum is an enormous issue. Until we make sure your health data securely follows you, we cannot make good on California’s promises to provide healthcare for all. 

I often imagine what would happen if I got in some sort of accident that left me unconscious in the ER. Without access to my records, no one would know about my complicated medical history and how best to treat me.

We have to and can do better. It is my hope that our California lawmakers will take this issue seriously and create a statewide HIE network now – we simply can’t wait and get mired in more studies in committees. It’s time to break down barriers so patients and our families can focus on healing and not on managing our medical records. We deserve better.

Anna Ramsey, 24, lives in the Los Angeles area.