I’ve been busy being scared.
Not the hide-under-the-covers scared. The whisper-quietly-but-keep-moving scared.
Last month, the life for many people in the United States was upended in a stunning, still jaw-dropping election. Since November 8th, I’ve talked with friends, colleagues, people in healthcare, policy makers, and the feeling I get when those conversations end is this:
Fear of the unknown.
What the Affordable Care Act has given to those who were previously uninsurable through individual plans, those who will exceed “lifetime caps” for health care expenditures… while we’ve been told that the new administration does not want to take those provisions of ACA away, we don’t know anymore.
Fear of the known.
The access to medications, devices, and services that people need to stay healthy are being restricted or priced artificially.
I’ve sat in meetings this year talking about insulin and competitive bidding for glucose test strips and all of it is complex. No easy solutions. In the end, patients suffer.
Fear for the options.
I purchase my health care plan through the Exchange, made possible by the ACA. While I do not get a tax subsidy (I don’t qualify because John’s employment could provide coverage for me, even though his plan is horrifically bad.), I do get to select a plan based on my needs. Each year, the premium has gone up, but I’ve been willing to pay it because I can’t be without it. This will most likely be the last year I will be able to do so if the new administration and Congress have their way.
And they most likely will.
The expectation is ACA will be repealed. I’ve been scouring the news and policy wonk blogs to learn what could happen, building scenarios that end often with… coverage will no longer be accessible as we know it. And we don’t know what will happen if it’s replaced…
If. It’s. Replaced.
My Biggest Fear
So, I’ve been a little busy being scared, which is why I’ve been quiet. My policy advocacy work has brought me to anger, to tears, and to the people who need those with voices to speak up. That’s where my focus has been.
I wonder if I help at all or if I’m shouting into the void. 29 million American families impacted by diabetes and yet only a fraction of a percentage actually speak to policy makers through the various diabetes organizations that promote policy advocacy.
If we don’t speak up, we stand to lose more than ACA coverage, more than access to the things that keep us healthy. That is what scares me most. Our own community doesn’t seem to think it’s important enough to talk about – except on social media, where the complaints pile up in silos of like-minded people. We will happily post pictures and spout off about diabetes awareness month and how important it is, but our friends are the ones who see these posts and tweets – not policy makers.
Moving Forward Scared
But I’m not pulling the covers over my head. I’m scared, but I’m moving forward. Diabetes, if nothing else, forces all of us to keep moving forward. The question becomes….
What are we moving forward to?