An Iowa teen didn't wreck his state's health care market. Here's who did.

The Trump administration and Republicans in Congress frequently point to Iowa as the prime example of how the Affordable Care Act, or "Obamacare," is failing. The lone company providing insurance in the state through healthcare.gov, Wellmark, pulled out of the private market for 2018 -- and in doing so one executive made a point of highlighting a particular customer whose monthly bills could run as high as $1 million. (Another insurer has since stepped up to fill the void for next year, but is charging significantly higher premiums.)

When word got around, one family saw the description and realized that the teenager with hemophilia the Wellmark executive had referred to is almost certainly their son. They were shocked to become a talking point in Iowa and beyond. HuffPost senior national correspondent Jonathan Cohn tracked down that family, who agreed to speak on the condition we shield their real names and identifying details. Cohn found that the real story of what went wrong in Iowa's health care market is a lot more complicated than Trump or the insurers would have you believe -- and says a lot about the state of our national debate around health care. Here's what he told Must Reads about the story.

How did this story come about?

When the Wellmark executive first started talking about the beneficiary who supposedly had $1 million a month in medical bills, word circulated quickly through the health care policy community -- just because that’s a pretty unusual case, and by that time there was a lot of focus on insurers who might drop out of the Affordable Care Act. I am not sure where I first heard about it. I think it may have been via David Anderson, a former insurance industry analyst who is now a researcher at Duke University and writes a well-known blog.

I’m fairly obsessed with following the ups and downs of the Affordable Care Act markets at the state level, since that’s really the only way to understand it. It’s not one program. It’s 51. (Washington, D.C. has its own market.) And I’m always looking for chances to write about the underlying issues of health care -- in this case, what’s the best way to finance care for people who need it? And I’m especially interested in such stories if it’s possible to tell them by reporting on, and describing, the lives of real people. When the Wellmark executive gave the more specific description of the family, the story took on a whole other dimension, since a lot of people were wondering whether that was an invasion of privacy.

Was it hard finding the family -- and then, once you did, convincing them to talk to a reporter?

Finding the family was a challenge, since Wellmark had never actually divulged a name. I figured that hemophilia was a very rare condition, and Iowa isn’t that big a state, so I began approaching people who might have come into contact with the family -- everybody from advocates for people with bleeding disorders, to social workers and providers of medical care. I knew that nobody could give me the family’s name and I wouldn’t have wanted them to do so. Instead, I would get in touch with these sources, explain what I was trying to do, and pass along a note with a request to send it onto the family -- in the hopes I’d get a response.

I didn’t -- at least not right away. But months later I got a phone call from an intermediary The family was interested in speaking with me, if HuffPost could agree to conceal their identity. Like all publications, we try to avoid those kinds of situations. But, with my editors’ approval, we went along. This was a special case.

It can often be hard to make wonky explanations of how health care works readable. What's your advice for writers struggling with stories that get pretty far down in the policy weeds?

Yes, it’s really hard! If I’ve got an article that has a lot of new policy detail -- or medical information, as is frequently the case -- I’ll try to study the material first, like I did when I was in college and taking classes, until I feel like I really know it. And then usually I end up writing a few drafts of the sections that deal directly with policy, since on the first pass the language is inevitably too dense and technical. I find that I actually have to write it to fully understand -- and once I’m done, I will sometimes run short passages by outside experts, just to make sure I haven’t translated information incorrectly. (That’s usually where the errors happen, I find: When translating policyspeak into normalspeak.)

I also try to avoid acronyms and numbers unless they actually add important detail, and to tell a story about how policy is affecting a certain group of people or how a law came to be.

So November starts in a few days, and it will be the first test of Affordable Care Act enrollment in the Trump era. What are you watching? What should be be following?

I expect this to be the most tumultuous open enrollment period since late 2013, when the Affordable Care Act first took effect. You may remember what was going on: The websites weren’t working, and a whole bunch of people suddenly discovered their coverage was a lot more expensive. The websites will be working this time, but the price hikes in some of these plans next year are really big -- and they’re hitting the point, maybe, where a substantial number of people won’t be able to afford it. Iowa is an example of this. Of course, we’ve seen this before. But I expect it to be worse now.

What's the takeaway for people like Jacob and his family? What are the policy solutions to the problem they -- and Iowa generally -- are facing?

I'm not sure people have really processed how difficult this open enrollment is going to be in places like Iowa, and just how high those prices have gotten, albeit for a narrow group of people. And at this late date, it’s not clear what anybody can do about it.

State officials were really banking on a waiver application seeking permission to mess around with the ACA in a way no other state had. It would have been pretty surprising if HHS had approved it. But the time and effort they invested in that was time and effort they didn’t spend on alternative methods for shoring up the market. For example, they could have sought to create a reinsurance system, like several other states did, and there’s good reason to think that would have kept premium increases lower.

In the short term, I suspect people facing those high prices will seek out alternatives -- quasi-insurance plans from ministries, which are popular in many states, or maybe some of those short-term policies that the Trump administration wants to expand. In the long term, somebody has to do something about the big split in the Iowa market -- with all those healthy people in the old, pre-Obamacare plans, messing up the risk pool.

Change could come from Washington, too. If Republicans repeal the law, then people in good health will probably be able to get cheaper coverage, but people with serious medical problems, like Jacob and his family, will have a tougher time getting insurance. If Democrats ever get control again, they’ll probably try to bolster the program, by giving people more financial assistance with premiums or out-of-pocket costs, using government bargaining power to drive down prices, or creating new government-run programs that can enroll people directly. Each has its tradeoffs -- more government spending or more regulation of prices or both -- but both would make it easier for people to pay for their insurance.

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