Category: Sara Santiago

GUEST POST: Trumpcare – Why it’s okay to panic and what is an invisible risk pool.

Dawn Pelej – 5/06/17

(This post is part 1 of a 3 part series.)

Like millions of Americans, I watched Thursday’s vote to repeal the ACA with a gnawing feeling of despair. Not because I was overly worried that the bill, as written, will be enacted. I watched enough School House Rock as a child to know that a very different bill will leave the Senate. What makes me angry is what this vote says about our country. The ACA, while imperfect, was a step towards making health care in this country an inalienable right. Because, how can you pursue life, liberty and happiness if you aren’t able to take care of your basic healthcare needs? What happened yesterday was the solidification of this pervasive Us vs. Them attitude that is taking over this country. The idea that good things happen to good people and that if you are poor or unhealthy or otherwise unable to find health insurance it is obviously in some way your fault and therefore you are less worthy of assistance.

But, the bill passed. And, as such, we need to address what it does and what it doesn’t do. Because like with anything, this isn’t black and white. And there is a lot of shit to cover. So, my plan is to cover a little bit at a time because otherwise it is overwhelming. Who knew healthcare could be so complicated?

(Everyone. Everyone fucking knew.)

Trumpcare hinges on “invisible high risk pools” so we are going to start there. These pools are managed by individual states and subsidized by the state and federal government. This is a new concept for most people because it has only been implemented in certain states on a very small scale. How it works is you have an open market, much like we have today. That market relies on a banded rating (individual premiums change based on factors like gender and age) versus the community rating model our exchanges currently use. Then, the health insurer determines, based on pre-set criteria, if the applicant is ‘high risk’. If the applicant is high risk, they are selected for the state funded pool. The insurance company agrees to take on some of the risk, and the state agrees to cover the rest of the claims. So, essentially, the state is subsidizing health insurance companies as an incentive to take on high risk individuals. In return, the insurance company turns the majority of premiums over to the state. The individual subscriber never knows if they are in the high risk pool or if they have received traditional insurance – that is the ‘invisible’ part. For a great primer on invisible high risk pools, I suggest you check out this article that is pro-invisible pools, and this one that explains just how expensive these pools are.

But, the concept is simple – isolate the people whose healthcare costs the most and direct all the subsidies towards them. It is healthcare triage.
How this differs from the ACA? The ACA also incentivizes insurance companies. They simply do it retrospectively. Knowing that someone who is healthy today isn’t guaranteed a healthy tomorrow, the ACA basically said “Hey insurance company. You take everyone and charge them the same amount. If you have an individual whose claims FAR exceed the premiums collected, we will pay you back.” So, why does the GOP think invisible high risk pools will work when retrospective subsidies didn’t. The answer is simple. Funding. They will lead you to believe that this isn’t a shell game and they are simply taking money that was previously spread out and allowing states to focus in on where the funding is needed.

That is disingenuous at best.

The ACA funded their subsidies through a variety of nominal taxes. However, when it came time to allocate these funds accordingly, the Republican led congress did not fully fund the promised subsidies. What essentially happened was this congress successfully hit their Go Fund Me goal and then didn’t spend the money on healthcare as promised. Because when democrats agree to offset private sector losses, it is a tax payor bail out that flies in the face of capitalism and when the Republicans do it, it is simply a stabilization of the free market. Or some bullshit. But the upshot is, this is not a matter of money shifting buckets to help those with higher health costs. This is the Republicans giving back some of the money they palmed in order to ensure the ACA imploded.

That 87% premium increase you saw? Blame it on congress only paying 13% of their bills. So, it would stand to reason that if they start paying their bills we will all see premiums go down. Can you take credit for fixing a system you intentionally broke? Paul Ryan is about to find out.

Stay tuned for my next post on how exactly these two bills differ in their funding. Or, as I call it, the Reverse Robinhood funding method.


Dawn Pelej, an executive in the healthcare industry, has spent over 15 years designing and implementing health insurance plans for small businesses. 

When Indifference is a Pre-Existing Condition, We All Lose

It’s difficult to adequately explain what it feels like to have a serious degenerative illness and have to listen to the barrage of ignorant or callous (and all too often, both) political rhetoric surrounding healthcare legislation. Like most people, I’m angry about the constant disingenuous spin on the health of the ACA and the manufactured need to repeal it rather than attempt a bipartisan effort to improve it. But the thing that bothers me the most is a big part of why all of this is happening in the first place, lack of empathy and the seemingly growing number of people who are unable to show compassion for people who’s life experience is different from their own. Instead of trying to understand each other better, it’s easier to manufacture a narrative that justifies discriminatory behavior. If you label groups of people as other-than-you, it’s easier to dismiss them. “Twenty four million people will lose coverage under this plan? Well, then they should stop being poor. They must be careless with their money, why should I have to contribute to their well being?” “Lifetime coverage limits cut off your kid’s chemo treatment? Where’s your life savings? Why don’t you sell your house? Start a GoFundMe page. It’s your kid, figure it out.” Basically, poor people need to stop being poor, and sick people should’ve planned better.

Oh. Ok.

All of this other-ing and distancing of oneself from entire groups of people makes it easier to be flippant when discussing ideas that benefit one group to the other’s detriment. For instance, throughout all this debate around healthcare, people who spend a lot of time justifying legislation that would allow insurers to discriminate based on a patient’s medical history often talk about “the sick” as if it’s a term for some hypothetical life experience of a nameless, faceless group entity. I get a similar impression when people throw around terms like “pre-existing conditions”, “lifetime coverage limits” and “high-risk pools” as if these details aren’t really a big fucking deal. I realize that, for generally healthy politicians and pundits, these terms are just talking points. They don’t seem to want to acknowledge the real-life (and death) gravity of their words as they dance around the consequences of proposed legislation that would remove the very consumer protections that people’s lives depend on, that my life depends on. Perhaps it’s because they’ve had the good fortune to be generally healthy, or perhaps they just aren’t capable of taking an empathetic stance on issues that don’t directly affect them. (Or perhaps they don’t give a shit because they’ve got a tax break to deliver.)

I guess what I want to say, at the heart of it, is this:

I’m not “other”.
I’m not a nameless, faceless, abstract entity.
I’m not broken, I am disabled due to disease, but that is just one small part of all the things that I am.
I’m not lazy or irresponsible and I didn’t do anything to deserve what happened to me.

My name is Sara.
I have silver hair and a crooked smile.
I’m a wife, a mother, a daughter, a sister, an aunt, and a friend.
I have my grandmother’s uncontainable cackle-laugh.
I’m a listener and a storyteller and a painter and a woman and a human.
I might even be a lot like you.
And I’m just trying to make it to tomorrow.

Thanks for reading.
Go do something good today.


Sometimes, we’re the lighthouse. Sometimes, we’re lost at sea.

We’re all fucked up in a million different ways, but with a little help, we’re also doing all right in at least as many ways. Sometimes, we’re floating somewhere in between, and we just need somebody who’s doing all right enough today to man the lighthouse, because our shit is off course. Maybe if we decide to give this lifetime together an honest try, we could take turns pulling each other safely back ashore. If we decide to hold on to each other when we’re fucked up and when we’re all right and when we’re treading between the two, then we stay tethered through the chop. And while there would always be someone fighting the current, there’d always be someone close enough to throw a life vest. There’d always be someone to wade out far enough to pull someone else to safety, and there’d always be someone on land to keep the light. If we just decide not to let go, maybe we keep each other from drowning.

Fuck. I don’t know. But I just keep thinking, if we could do the hard work now, if we could all show some fucking humility right now, spend less time calling people names and more time learning people’s names, start listening to each other now, start looking out for each other now, start just giving a shit about each other now, maybe at some point, the combined best parts of ourselves could cancel out the most garbage parts of ourselves.


A lot of people ask me for advice on how they can help their loved ones who have chronic, degenerative or terminal illnesses. They especially want to know what to say, how to talk about illness, and feelings, and fear, and all the awful things. I can’t speak for everyone, but I can offer what I know, what I feel, and how my friends and family have helped me.

There are a lot of ways to respond when a friend with degenerative illness shares with you the latest shitty (and scary and often humiliating) ways that their body is breaking down, or the horrible treatments they endure, or the conversations with doctors that are heavy enough to crush even the most valiant among us. People tend to say things like, “It’s going to be ok.” or “But you look great.” or “Have you tried [some shit I read about on the Internet]?” or “You can beat the odds, and maybe they’ll find a cure…” or at least something that sounds helpful or hopeful.

And it’s hard to know what the fuck to say to someone you care about when shitty things are happening to them, because you want those things to NOT be happening to them. You want to make it better, or at least easier, and you are totally freaked out about saying something wrong. (And we know you love us. We know your hearts grow heavy for us. We don’t talk about the hard stuff often because we love you and don’t want to hurt you either.) But, in that moment, we don’t want to hear that it’s going to be ok. It’s not ok. It won’t ever be ok. And we’ll figure some shit out and adapt. But, in those moments that you manage to get us to talk about it, those times when we don’t gloss over it and change the subject, don’t freak out. Just listen.

Listen to what we say.

And let it be shitty.

Let us be sad or pissed or tired or defeated. We won’t always feel that way. But if we tell you the truth, (the stuff we usually don’t share because we don’t want to bring everybody down all the goddamned time), it’s because we need someone to be with us in that particular shitty moment. Don’t try to make it better. Don’t try to clean it up. It’s messy and awful, and we’re hoping with all of our might that you’ll just be there with us in that moment. It’s a place we usually visit alone.

We stay there for a little while sometimes, and before we can climb out and try again tomorrow, we have to








Our most vulnerable selves are peeking from under the blanket, for the chance that you’ll stay, for the chance that your hearts love our hearts enough to sit in the messy and the awful for just a little while.

It takes a real friend to say, “Well that’s goddamned horrible.” and then pour a drink or make a snack and let us talk, and cry, and laugh that not-really-funny-but-I-don’t-know-how-else-to-cope laugh about how fucking seriously ludicrous it all is.

So, my advice to you and your worried heart is: Stay.

Stay with us in the awful moment. It’s a lonely place and invites to join us there might be rare, but if you get one, please accept.

Please stay.

Well that sounds like bullshit shitfuckshitstorm.

The text response that reminded me to write this post.


#sarathon12, a very good cause.

Joan Cusak Sixteen Candles Sara Santiago #sarathon12

The appointment to determine whether or not I can get out of this brace is only twelve days away. No big deal, yeah? You can do anything for a mere twelve days, right? No biggie. It’s cool.


In twelve days it’ll be exactly six weeks in this asshole neck brace. I’ve been wearing the Strangle Choke model of Kill Me Now Neck Braces, Ltd. for over four weeks already.


I mean, it’s not like I’m in prime health, really just tip-top shape, just come from my regular afternoon meditation class, and was gently and politely asked to wear a hard cervical collar. For fun. Probably for a fundraiser. A something-a-thon. I mean, definitely a good cause thrown in there somewhere. Anyway. It’s not like that.

What I’m getting at is that zen, fundraising Sara can handle 12 days of whatever because, totally. But for Kill Me Now Sara, the actual number of days/hours/minutes she has left — well, she feels them eleventyhundredfold, at least. She’s ready to fucking snap, mostly because of the often heard (of late) phrase, (a jolly) “Only [number] more days!” Um, yeah, probably just don’t say that to me, ever, for crapsake. (I will fucking scratch your eyes out. I swear to god, I will kill you.)

Please do NOT attempt to adjust my perspective with reminders, and/or anecdotes of the “those-less-fortunate” variety. Do not expect to be able to reason with me about any of these self-absorbed melodramatics. I am beyond reason. I’m willfully unreasonable.

(I’m also probably just being a giant pussy about this because of the whole unreasonable thing. Maaaaaan, I hate that.)


But(!), could you please do your magic for twelve days, Internet? Just make it a little easier. OHGAHD, please.

Twelve Days.

You guys.

What the shit do we do now?


I could never (ever) even wear a turtleneck before.


Oh, and this.