Have you ever felt overwhelmed by the fact that navigating the American health system feels like a full-time job? Maybe you are trying to diagnose a mystery illness, or your loved one had a sudden medical crisis, or your disability makes it hard for you to navigate the eleventy offices that all need to be orchestrated to ostensibly help you out. In the absence of comprehensive healthcare reform, what can you do?
As a university professor who is a carer for someone with a disability, and who has a disability myself, I often feel like I’m drowning in the US medical system. When I was younger, I assumed I was just bad at bureaucracy (and it’s true that my respiratory condition does sometimes make it hard). During my five years in the UK, I got to see how simply and easily a country with a National Health Service could cut down on paperwork and make care efficient and simple. Back in the US as a gradstudent, I got stuck again in the quagmire, sometimes waiting years to get diagnosed rather than face the complexities of a healthcare system and the risk of crippling medical bills in a country where companies profit from inefficiency.
Then in 2017, my postdoc at Princeton University showed me that navigating the US healthcare system is indeed possible if you have the right kind of help. The university health plan included someone called a “health advocate,” someone you could call to explain and navigate the bureaucracy for you. For the first time, I felt like I didn’t need a PhD in healthcare infrastructure just to see a doctor or get my needed medication. In my role as carer, I sometimes play that role for the person whose health I have committed to support- here was someone who could play that role for me.
Most health plans don’t include support for a health advocate (sigh), but if you think this would be helpful to you, there are still several organizations that can help:
- The Patient Advocate Foundation offers free case management to patients and families for people with chronic, life-threatening, and debilitating conditions
- The National Association of Healthcare Advocacy publishes a directory of advocates
- The Alliance of Professional Health Advocates also has a directory
I think it’s a deep tragedy that we live in a country where people with the fewest resources and greatest disabilities are the most likely to be failed by a broken medical system with incentives that too often confuses profit with care. As Americans work together to fix that broken system, sometimes we just need to navigate it too. That’s where a health advocate might be just what you need to get through to fight another day.
(image of Longleat Maze CC BY-SA 2.0 by Jon Candy)