For over a decade, I’ve been helping politicians talk about health care and the Affordable Care Act. But in the past weeks the health care system hit me like an avalanche consuming a mountain. In the blink of an eye, I went from someone who thought they understood the minutiae to realizing all the Beltway smarts in the world couldn’t prepare me for this journey.
In 2010 as a staffer working for House Democrats I crafted messaging as we attempted to make some of the most expansive changes to our health care system in a generation.
There was hand-wringing, whipping, multiple votes, House and Senate versions that had to be reconciled, and finally, in 2010, the passage of the Affordable Care Act. As President Biden put it, at the time, it was a “Big F*ing Deal.” Democrats held a large majority in the House and Senate and many of them took a hard vote that would lose them their seat in Congress.
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At the time, Speaker Pelosi pushed moderate members to secure their votes. She once told members of Congress about a trip to Africa where she saw a prayer posted on the wall of a hospital that read: “When one day, I will happily visit my maker in heaven, He will say to me ‘show me your scars.’ And if I say: ‘Lord, I have no scars.’ He will say to me: ‘Was nothing worth fighting for?’
She was ready for scars, and spent the next decade plus fighting to pass and defend the law from Republican attacks.
The Tea Party, which was the right–wing fringe element du jour, claimed there would be death panels. I have yet to see a death panel, but right now I’m seeing how the law works in real time.
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My husband underwent brain surgery to remove a benign brain tumor and has been in a neuro-intensive care unit for two weeks. His stay has been longer than expected and all of a sudden I’m focused on the math. Out-of-pocket maxes, deductibles, coinsurance. One would need a college degree in health insurance to navigate their system — and that is by design.
As I harkened back to my days on Capitol Hill I remembered that the ACA eliminated nearly all annual and lifetime caps on what insurers pay. I checked with mine to make sure it was the case, and then breathed a sigh of relief.
But this specific provision didn’t end up in the bill by chance. A mother from North Dakota, Brenda Neubauer, who ran into this issue navigating her son’s hemophilia brought the issue of annual and lifetime caps to the attention of Sen. Byron Dorgan.
As he simply put it to Vox News, “I didn’t know that a good many health insurance plans had limits, I thought if you were insured, you were insured.”
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Earlier this week, I called Brenda after finding her number online. I asked her if she was the woman who pushed Congress to end caps that insurers placed on care, she said yes. I thanked her profusely for her advocacy and she reminded me that we are all one heartbeat away from being in the same position, and told me I’d be in her prayers.
While I worked to stop efforts to “repeal and replace” the law, I never thought I’d get a masterclass in health coverage or receive a letter from an insurer with limited explanation of why only half of a craniotomy was covered and half deemed cosmetic.
I now have my own scars from hours spent on the phone making sure that they could not only open his head but close it back up as well…under the correct billing codes, of course.
I wish that my experience was unique, but it isn’t.
My husband and I met on Capitol Hill and the ACA was one of our first battles together. Theoretically, I should be able to navigate this system with ease. But now, as I fight the system from the bedside, one thing is clear – insurers still run the show. They continue to swiftly change their models to increase their bottom line, faster than government can react.
