Being Scared…

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The expectation is ACA will be repealed.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? 



  1. I am scared as well. I do not use the ACA because I have adequate insurance. However, I fought hard for passage of the ACA and voted to protect it (unsuccessfully of course now) for many years. I do not know exactly what to do. I continue to ask those who wish to repeal it what they will implement to replace it. I have never been given a single answer.

    The one inroad I seem to get when I speak to representatives is that lacking the ACA, the entire economy is taxed. Let’s face it, uninsured people do receive care at some point. It may be end of life care or it may be in the ER’s across the country. Assuming these people cannot afford to pay these bills it falls on hospitals to bankrupt the individual and still there is no payment. That raises hospital costs with raises all of our health insurance costs. I propose that we need to find someone who can estimate for us the economic drag (cost) that uninsured individuals place on the system. I have heard health care administrators estimate it is 20-30% of our annual health care premium.

    That then drives up premiums more, which results in more uninsured which forces more public expenditures of money. it seems we need some good facts to fight with. Will it make a difference? Not this time, but maybe it will help when the current ACA is repealed and we can start the fight for the next thing. .

    Also we have to remember that essentially the ACA is the republican plan before the debate started in earnest. There is no republican plan B. Repeal is about making democrats look bad not good policy.

    Finally, there may be some hope in the Medicare reform which might be adopted and will be scarier to seniors. We may have a chance to slide in a Medicare for all provision so long as all those who chose the option pay their own Medicare premium that would ultimately strengthen the Medicare system by broadening the base.

    This item has been referred to the TUDiabetes Blog page for the week of November 28, 2016

  2. I’m right here with you in this fearful mode. So many emotions swirling around. I too have insurance that I buy off the exchange, without a subsidy. It’s a scary thought that we might go backwards and lose our health insurance. If Insulin was $25 a vial, I wouldn’t be so frightened, but it isn’t and… and… Thanks for writing. This right here is how I’m feeling these days. It’s so hard, but at least I’m not afraid and alone.

  3. People yammering on the silos you mentioned are paralyzed by fear. I keep thinking, “I’ll think about it when I recover a little bit from the election.” DPAC helps. Tiny quick, visible, actions any little chicken can do.

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