California’s healthcare system is broken—and the solution is right in front of us.

Patient advocate image by d.ee_angelo

OPINION – California’s Medi-Cal system is undergoing a number of changes in an effort to improve quality of care for patients. One of the most significant proposed changes is the recently passed Newsom administration’s budget trailer bill language to expand the Whole Child Model program into 12 additional counties, beyond the current 21 counties across California. This expansion of the Whole Child Model would essentially transition children in the California Children’s Services program, which covers children with certain complex medical needs such as pediatric cancer, from fee-for-service to a managed care.

It’s a major change, and with change comes complexity. The Whole Child Model seeks to address the entire body of needs that affect a child’s well-being. But in the transition from fee-for-service to managed care, it’s critical to support children and their caregivers as they learn to navigate a new delivery system.

I know from experience how difficult it is to navigate the healthcare system as a caregiver.  When my mom was diagnosed with pancreatic cancer, it was a nightmare. Anyone who’s been through it will tell you that dealing with any diagnosis is immensely challenging; what made it worse was feeling like we were fighting the entire medical system in addition to her disease. Everything was a challenge: from finding the right doctor to securing an appointment to receiving contradictory answers to getting incorrect diagnostics and resistance to additional tests. The entire process felt rigged, and not in our favor.

We had it better than most. My mom was a radiologist who specialized in diagnosing breast cancer in women. My family was living in New York City with access to some of the best doctors and institutions. All of this should have made things easier for us. None of it mattered. I remember thinking, if this is happening to us, this must be happening to millions of Americans all around the country. How much worse is it for people with no medical experience at all?

It’s a valid question. As reported by the National Assessment of Adult Literacy, 88% of U.S. adults lack the health literacy needed to navigate the complexity of our healthcare system. Read another way, nearly 9 out of every 10 Americans are set up for failure when interacting with their health.

I remember thinking, if this is happening to us, this must be happening to millions of Americans all around the country.

What I know now that I wish we’d known about are patient navigator advocates. There have been an enormous amount of clinical studies conducted on the topic that show, time and time again, that no matter how you describe it (case management, care management, care coordination, healthcare navigation, healthcare advocacy, healthcare liaison) a personal touch significantly improves patient outcomes and lower healthcare costs across a variety of modalities, institutions and countries.

If California truly cares about improving quality of care, this proposed change could—and should—be bolstered by the addition of care managers and advocates to help pediatric patients and their caregivers navigate the transition. Care managers and patient advocates help patients and families understand the complexities of the healthcare system, from referral requirements and processes to annual medical review processes, authorization processes and more.

I know that when my mom was diagnosed, we felt alone. But no caregiver should ever feel alone when their loved one is fighting for their life. As the California legislature and governor negotiate our state’s budget, I urge leaders to consider care management advocates for children with complex medical needs.  Feeling confident in your healthcare shouldn’t be a privilege. Everyone with complex medical needs in California should have an advocate by their side—period.

Jeremy Gurewitz is the Chief Executive Officer and founder of Solace, a digital platform for healthcare advocacy matching patients to experienced healthcare advocates.

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