A Recipe for a Health-Care Disaster

Our house is filled with the mesmerizing smells of orange zest and vanilla and butter and sugar, as I try out a new recipe for shortbread. It’s a cold, rainy day outside, but as the oven works its magic, that scent is wrapping me like a cozy blanket.

It’s the only thing that keeps me from screaming.

It’s the only thing that holds back the anxiety threatening to curl my spine and slowly transform me into a ball of despair.

Every day of the Trump administration brings fresh hell, for countless people and the broader fabric of our communities, our nation, and our world. Right now, there’s a target on my back.

The weapon aimed at me — and millions upon millions of others — is the AHCA, also known as Trumpcare, famous for having only had 17 percent public approval last time around, and best described as the Oh You’re Sick Good Luck With That Here Are Some Thoughts And Prayers But We’re Actually Rooting Against You Act.

It’s back. This time, it’s even worse, not least because new provisions will make it more difficult for people with pre-existing conditions to get affordable coverage. If you’ve heard the President assure you otherwise, please know that, like a lot of what he says, there’s a hint of truth wrapped in a much larger, pernicious falsehood. Here’s CNN:

New Jersey Rep. Tom MacArthur and leaders of the conservative House Freedom Caucus cut a deal that would require insurers to cover those with pre-existing conditions; but, unlike the mandate under Obamacare, insurers could charge them higher rates than others in the plan if they allow their coverage to lapse.
Such a change could leave those with pre-existing conditions, such as diabetes and asthma, paying much higher premiums and potentially facing gaps in coverage, health care experts note.
Republicans would have states set up “high-risk pools” for those with pre-existing conditions. There is no Congressional Budget Office score of the proposal yet, but the AARP has projected that premiums in high-risk pools could cost as much as $25,700 per year.

That’s pretty much the Fyre Festival of health care — hucksters selling promises of good times and good vibes, but then the reality is dismal and dangerous and there’s no way off the island. Or, to put it another way, free of strained similes: Trumpcare is a danger to our collective well-being and, moreover, an existential threat to millions of Americans like me.

The Kaiser Family Foundation estimates that about 27 percent of all Americans under the age of 65 have a pre-existing condition, a term that includes not just the obviously dire stuff like cancer (even if you’re a decade in remission) but also lupus and sleep apnea and diabetes and Hepatitis and mental health concerns and being pregnant. Most households have someone with a pre-existing condition, according to that Kaiser report.

I have a pre-existing condition, Crohn’s Disease. It was diagnosed when I was twelve years old. It’s an autoimmune disorder for which both cause and cure are unknown. It causes inflammation of the colon, resulting in symptoms such as nausea, fatigue, diarrhea, vomiting, and general severe unbearable pain. In severe cases, the treatment is to surgically remove the colon — which is exactly what happened to me. I poop in a bag that is attached to my belly. My daughter, who is almost two, finds this very confusing.

I change my bag every few days. It looks like this:

I use those scissors to cut a stoma-sized hole in the bag, then use one of those rings on the left — caulking for humans, basically — to help form a good seal as I press the bag onto my belly. I use about six bags and six rings each month. The disease has been in remission since my last surgery — which removed the inflamed area — in 2009. It will likely come back, and I really don’t want to think about that or talk about it. For now, I’m happy and healthy and a fully functional member of society, working and raising a toddler and baking shortbread.

To keep things under control and prolong this period of good health, I take a couple of medications; one’s a pill and the other is an injection I self-administer every two weeks. The pre-insurance monthly costs for the bags, the rings, and the medications total $3,481.88, or $41,782.56 per year. That’s before any other medications or doctor appointments or procedures or blood work — all of which I inevitably have, in some number, every year — and before any costs at all for my wife and daughter. Just the baseline, expected costs of maintaining a normal life using readily-available (not fancy, not experimental, just normal) supplies and medications.

But our real-life costs aren’t anywhere near that high, because we have good insurance. Right now, our insurance is through my wife’s employer, and in all likelihood, not much is going to change on that front for now. However — however however however — the entire point of insurance is to protect against the unknown, the unseen, the abstract miseries that lurk in the future.

What if we want to buy into the exchange? What if our insurance lapses for some reason? Insurance coverage through a high-risk pool would still be less than my medical expenses, but it would stretch our budget to breaking. We’d be out of our house. I’d cut back on my medications to feed the family, which would probably make me sick and less able to work . . . and more stressed out and more sick and down we spiral. These are not absurd hypotheticals. They’re realities that are just one stumble away for us and the everyday lives of millions of other people just like me who rely on good insurance and good care just to survive.

Insurance is supposed allow us to function without excessive fear that our lives could crumble at any moment. Health insurance is what allows me to write books and serve on nonprofit boards and be an involved father and husband — to do all that sappy family-values, community-serving, work-hard-and-prosper stuff that the Republican party claims to embrace. People with chronic illnesses and pre-existing conditions are already walking a tightrope of existence, doing our very best to survive and thrive despite the odds, wary of every potential misstep. By taking away the safety net, the President and his Republican colleagues are cruelly rooting against our very survival.

Look: There are a lot of things in politics and in life where there are reasonable debates to be had and competing arguments to be made, and so often we seem to think of these things as just talking points that are entertaining to discuss at maximum volume.

This is not one of those times. For me and for millions of other Americans, Trumpcare is not hyperbole. I will not allow my life, and those of millions of other people, be treated as mere fodder for political drama, as though the sport of pundit-class bickering and presidential score-settling and intractable conservative stubbornness were somehow more worthwhile than my desire to be alive.

The only way to stop this is to tell Congress to vote no. They’re already getting pressure from the likes of the Koch brothers to vote yes; Mike Pence has been working the phones to push Congresspeople get on board.

So here’s here’s your recipe for averting this health-care disaster:

Please, please: CALL YOUR CONGRESSPERSON AND TELL HIM OR HER TO VOTE NO ON TRUMPCARE. This is especially important if your representative is a moderate Republican who is still on the fence. Please call today and call again tomorrow and Wednesday and Thursday and … It’s easy — it takes less than a minute and if an awkward introvert like me can do it, then so can you.

Here’s some more important information to know, from the guy who ran Medicare, Medicaid, and the Affordable Care Act for President Obama:

Here are some talking points, via Indivisible:

  • I oppose TrumpCare, and will continue to hold YOU [your Member of Congress] accountable for preserving quality, affordable coverage under the ACA.
  • The ACA is the law of the land. I will not tolerate any more time wasted on TrumpCare, which would take away care from 24 million people and cut Medicaid by $880 billion dollars in order to give tax cuts to the wealthy, insurance companies, and other big corporations.
  • Despite what Trump says, the latest amendment makes the bill even worse by allowing states to end protections for people with pre-existing conditions, meaning people will face unaffordable premiums due to a pre-existing condition. I expect YOU [your MoC] to stand up for the tens of thousands in our district who could be charged higher premiums.
  • Trump and Congressional Republicans claim high-risk pools will protect people with pre-existing conditions. That’s not true. High-risk pools aren’t new, and they just don’t work. In the past, high-risk pools have been dramatically underfunded by the states and federal government, resulting in skimpy coverage and high prices for those who need insurance the most.
  • Historically, high risk pools have dramatically raised prices for those they’re intended to serve — the sick. High-risk pool enrollees paid premiums up to two-and-a-half times larger than those charged to healthy beneficiaries buying coverage on their own and faced deductibles as high as $25,000. Even the official healthcare.gov website points out that premiums were twice as high under a high-risk pool plan prior to the ACA.
  • It is estimated that at least $174.1 billion per year would be needed to adequately fund a national high-risk pool. There is no indication that Congressional Republicans or Trump are willing to give states that kind of money.
  • No matter how much money Republicans throw at them, there’s a fundamental problem with high-risk pools: they pull together people who are sick and require more expensive treatments. That means they will always be less efficient than the exchanges in the ACA, which put everyone on an equal playing field.
  • President Trump has stated that the new bill will reduce deductibles. In fact, the bill will raise deductibles for moderate and middle-income individuals and their families by getting rid of subsidies that help people pay out of pocket costs. I want YOU [your MoC] to do everything possible to get deductibles down, not increase them.

Make calls. Send faxes. Show up in person. Please and thank you. Then come on over and I’ll share some of this shortbread with you. It’s delicious. Ask nicely and I’ll even share this recipe with you.