Seth’s 50-State Network: grassroots advocacy that started from the trunk of his mom’s car

I have always thought that America has the best healthcare system – for anyone lucky enough to afford it, or determined enough to fight for it. I fit into the second category. Heaven knows the first category does not apply. I fight for it as a patient advocate.

My patient advocacy began fifteen years ago when I was a young man (by my definition, a young man is someone who is older than 13, has had a bar mitzvah, but is not permitted by the state to operate a motor vehicle yet – so a grey space of time in one's life when he can be productive but not actually drive himself anywhere for said productivity). Our insurance company at the time, Blue Cross Blue Shield, which my mom was (and remains) a pro at dueling with, sent a sterile form letter informing us that the new medicine my doctor had prescribed was not going to be covered because they didn't want to. No other explanation. No recourse. Not even a name signing the letter. 

Paying out of pocket for a brand new prescription drug called Pepcid meant a lot of money. That the doctor needed to prescribe something else, made me wonder: was this fair? Did they have a right to treat us this way? 

I knew that I would live my life just fine without this particular proton pump inhibitor drug (which today is sold over-the-counter for just a few bucks), but it stressed me out to think that decisions were being made about my medical care by someone who was neither my doctor, nor in a qualified position to administer (or determine) my treatment. In other words, some MBA in a back office of an insurance company was determining what I could and what I couldn't take. Where would it stop? Did they have the right to do this? Why didn't I have a right to challenge it? What if we were talking about a serious situation with a procedure or surgery that they determined was not covered, and left me on the hook and resulted in harm? 

I remember thinking to myself, as a 15 year old kid, that I was living in the dark ages of a society that would even let this happen. Back then, before computers, I literally would think: W.T.F.?

So I started bringing this issue up with everyone who would listen.  In the beginning, this meant asking my mom (for whom I dedicate everything that I do, and have the amazing fortune of being able to share all of our success with still) to drive me to local town hall meetings.

It was at those municipal meetings in my NYC suburban county, that I spent every afternoon and evening of my high school life presenting my story during the open public hearing portion, and respectfully submitting a resolution for them to consider approving. (A resolution is something that states a position on a certain issue you know, a "be it resolved that”…, which is different than a bill or an act that creates an actual law). So I would bring this issue up to elected bodies, and ask them to vote their opinion of it, and that opinion would officially be presented to the elected body (the State legislature) which actually had the power to legislate on this issue. Grassroots community advocacy from the trunk of my mom's car. 

The resolution I'd go around promoting to elected bodies normally tasked with issues regarding street lights, local children's parks or zoning for schools, gave these local village trustees and council members the chance to weigh in with their opinion even if they didn't have the authority to enact this type of legislation. And they did.

Thus my patient advocacy career began at the absolute ground floor. As a result, dozens of local municipalities told Albany how they felt, and despite politics in Albany (which can only be described as itself being a chronic disease) ignoring our efforts, the process was born and the flame was ignited.

So now we must continue this effort and use our computers, our cell phones, our networks and most importantly our personal experiences to raise as much awareness, create as much noise, and be as organized and unified as possible. So that our rights as patients – and as citizens – are not ignored or wholesale dismissed by the companies who now run our (healthcare) lives. 

The difference between then and now? We're smarter, we're better organized, and I have my motor vehicle license…so the sky is literally the limit.

I'm inspired by the positive response to our recent call to action with last month's launch of "Seth's 50 State Network" which will pave the way for us to cultivate and to amplify our voice as a community, in all 50 states (and the District of Columbia!), to engage the people we need to engage (this time the decision makers at the top!) to grant us the access we deserve. 

As a patient, caregiver or loved one, you know what's best for the health of you and your family. We want to provide you with information when a local fight arises and help you amplify your voice to ensure that access to comprehensive, safe and effective care is available to you and the countless millions who cannot speak up. These are your friends and neighbors, which is why our job is so important.

And there are literally dozens of ways that you can help, including: re-posting a status update from the CreakyJoints Facebook page (or a tweet), writing a letter to the editor of your local paper, meeting up with us at your state capitol to testify before your State Legislature, or something as simple and as powerful of sharing your story with us. Each action builds upon others, and no action is too big or too small for us to work on together.  

Consider taking the next step to getting involved. Consider joining "Seth's 50 State Network" so that together, we can help millions of people. 

The difference between the mid-90s when I first started presenting my story to the local animal control unit of the town board (I would literally talk to anyone who would listen) and today, is that today, we have our voice, we're networking this voice, and we're channeling it to the people who need to hear it immediately. And back then I had to do this with a fax machine and within the availability of my mother's carpooling schedule. Imagine what we can accomplish together with everything we have today. 

None of us chose to have a chronic disease. But all of us have the choice to fight for the best care possible. 

Join Seth's 50 State Network

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