"For the most part, the future of the ACA is out of my hands, and all I can do is wait and see. And as the law’s future hangs in the balance, I thought it was important to tell my story about how the Affordable Care Act intersected with my own life. Now that I’ve done that, I only have one more thing to say:Thank you, President Obama. From the bottom of my heart, thank you."

It took place all the way back in 2008, but I can still remember the call. I sat in my car in a grocery store parking lot. I had gone there to make the call so that nobody at my workplace could listen in.

For the past two years I had worked as a full time reporter at two weekly newspapers. The jobs were a good learning experience and my employers treated me well, but from almost the very beginning I wanted to eventually transition to a freelance writing career. And then suddenly, in the summer of 2008, that opportunity presented itself. An online publication run by PBS wanted to hire me as a managing editor. It was a 20-hour-a-week gig and paid almost as much as what I was then making at my job. PBS would serve as my anchor client and I could use the remaining time in my work week to cast about for more freelance opportunities.

But first I needed to secure health insurance.

That was what the call was about and why I was conducting it in a parking lot. I’d looked up the phone number for my current health insurer and wanted to inquire about a private plan. The woman who picked up exhibited the cheeriness that’s common in many customer service phone calls. After I explained my situation she said she was more than happy to help. She started running through a series of questions until she landed on the one I had been dreading.

“Do you currently have any medical conditions?”

“Yes. I have ulcerative colitis.”

“Oh,” she replied, the cheerfulness in her voice gone.

One day six months earlier, I’d noticed a small speck of blood on my toilet paper. I was 23 and had suffered little more than the occasional cold for the entirety of my life up until then, so I was able to put the incident out of my mind for a few days until the time I looked down into the toilet and saw an unmistakable streak of blood in my stool.

Over the next several weeks, the situation continued to worsen. What started as tiny amounts of blood soon increased in volume. Sometimes I’d go to the bathroom and afterward there’d be no stool at all, just crimson-stained water, as if I’d applied several drips of red food dye. I started going to the bathroom several times a day, sometimes having to rush to get there on time.

Then the cramps started. They took place in my lower back and left me shaking in pain. Hot showers were the only thing that seemed to provide some relief, so I spent what added up to hours each day in the bathtub, curled up in a fetal position, sobbing.

I had no idea what was wrong with me. An aunt who is a nurse practitioner thought I had bleeding hemorrhoids, but the over-the-counter medication I bought did nothing to reduce the symptoms. I of course wanted to go to a doctor, but it was complicated by the fact that I was still waiting for my health insurance to kick in.

While my employers were generous enough to pay for our health insurance in full, you had to be employed at the newspaper for at least three months before gaining it. I’d been slow to sign up for the insurance plan at the three month mark, and so when the bleeding started I scrambled to fill out and file the necessary paperwork. Thus began an agonizing waiting period for the application to be processed and for me to receive my insurance card.

During this wait I didn’t dare go to a doctor because I was terrified that such a visit would designate whatever was wrong with me as a pre-existing condition. And so I waited in agony as my situation worsened. After what felt like ages but was probably only a few weeks, the health insurance card arrived.

Almost immediately, I scheduled an appointment with a primary care physician who then referred me to a gastroenterologist. The gastroenterologist had his suspicions about what was ailing me and a colonoscopy confirmed it: I had ulcerative colitis. UC for short.

I’d never heard of colitis. Nor did I know what an autoimmune disease was, that these kinds of diseases ran in my family, or that one of my uncles currently suffered from colitis. But at least I had a name now for the condition that had consumed my every waking thought for at least a month.

I learned there’s currently no cure for UC, but that it’s treatable, mostly through various drugs that suppress your immune system. And when I went to go fill my first prescription — for a drug called Asacol — I intuitively grasped that I was going to be a burden on the healthcare system, possibly for the rest of my life. No matter what my insurance premium was, the cost of maintaining my health would always exceed it.

What’s more, while other people my age could forgo insurance and accept the risks of a catastrophic health crisis, I would forever be dependent on insurance.

A gap in coverage, even for a short while, could financially ruin me.

Ilearned that day in the parking lot that I was uninsurable in the individual market. I could offer to pay thousands of dollars in monthly premiums and insurers still wouldn’t take my money. For the foreseeable future, I would be dependent upon employer-based group insurance.

And so I didn’t leave my reporting job to embark on a freelancing career. A few months later I took a job at a marketing agency and moved to Washington, DC. Luckily, PBS was still willing to give me some freelance work on the side.

Meanwhile, a young Senator from Illinois performed a surprise upset by winning the Democratic nomination for president. He then went on to win the election. There were a lot of memorable moments during that campaign season — Joe the Plumber, Palin’s wink, McCain referring to Obama as “that one” during a debate — but for me, a guy who would literally bleed to death if I went too long without medical care, it was Obama’s promises to fix our broken healthcare system that most captivated me.

And true to form, his administration and counterparts in Congress immediately set about drafting reform legislation. This is when we first heard the rumblings of what would eventually become the Tea Party, and I’m not alone among liberals in having not taken the movement seriously at the beginning. There was this feeling at the time, for those of us on the Left, of invulnerability, that we had transcended the conservative-vs-liberal dichotomy and would govern with a moral majority for the foreseeable future. After all, this was a coalition that had secured a filibuster-proof majority in the Senate and managed to turn red states into blue ones.

How naive we were. The Tea Party was masterful in how it targeted bipartisan Republicans and forced them to oppose what would eventually become the Affordable Care Act. I watched YouTube videos in which conservatives stormed town hall forums hosted by their local representatives and drowned out all meaningful dialogue with chants of, “Read the bill! Read the bill!” Nevermind the fact that, at that point, there wasn’t yet a completed bill to read. These Tea Partiers flooded Capitol Hill, shouted racial epithets at black members of Congress, called Senator Barney Frank a “faggot,” and even spit in the face of at least one Congress member.

It worked. One by one, Republicans dropped from the negotiations. What’s worse, key provisions began to die off. Despite overwhelming support for the public option, it couldn’t withstand opposition from insurance company lobbyists. The debate reached a new low in August 2009 when Sarah Palin, fresh off of quitting her job as Governor of Alaska, penned a Facebook post in which she claimed that her “baby with Down Syndrome will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide, based on a subjective judgment of their ‘level of productivity in society,’ whether they are worthy of health care.” In addition to not knowing Africa was a continent, Palin apparently didn’t know how quotation marks worked or that they were meant to signify actual quotations.

And then the unthinkable happened. In a special election, Scott Brown did something a Republican hadn’t succeeded in doing since 1972: he won a Senate seat in Massachusetts. What’s worse, it was the seat of the late Ted Kennedy, the liberal lion who had long championed universal healthcare. The Democrats had lost their filibuster-proof majority and not a single Republican seemed ready to stick their neck out and save the legislation.

For a dark moment there, it seemed like all was lost. But then we, the public, learned about an obscure procedure called “reconciliation.” After months of compromises and every conceivable effort to bring Republicans to the table, Democrats resigned themselves to passing reform with a party line vote.

This didn’t damper our jubilation. Joe Biden famously called the Affordable Care Act a “big fucking deal,” and it was. And while yes, Republican lawmakers had subsumed themselves in a sea of misinformation surrounding the bill, surely they would recognize the good it caused in the coming years. In a comment that’s now infamous, Nancy Pelosi explained how the benefits of the ACA would become apparent after its passage:

“You’ve heard about the controversies within the bill, the process about the bill, one or the other. But I don’t know if you have heard that it is legislation for the future, not just about health care for America, but about a healthier America, where preventive care is not something that you have to pay a deductible for or out of pocket. Prevention, prevention, prevention — it’s about diet, not diabetes. It’s going to be very, very exciting. But we have to pass the bill so that you can find out what is in it, away from the fog of the controversy.”

Of course, what she meant by this is that, up until its passage, the ACA only existed in the abstract, and so therefore it was subject to histrionic claims from the Right. But once millions of 20-somethings gained access to their parents’ insurance; once the chronically ill no longer had to worry about their preexisting conditions; once the poor received their subsidies — then the benefits of the ACA would become readily apparent.

But as we now know, conservatives latched onto that one phrase — “we have to pass the bill so that you can find out what is in it” — and twisted it into a completely different meaning. The misinformation on the Affordable Care Act, soon to be rebranded as “Obamacare,” was only just beginning.

While some provisions — like the one that let kids under the age of 26 remain on their parents’ insurance — kicked in right away, many of the most consequential parts of Obamacare were still a few years off. Republicans grasped that once the exchanges were opened and the Medicaid expansion enacted, millions of Americans would gain access to insurance and any attempt to then take that insurance away could have devastating electoral consequences.

So they set about making sure those provisions would never see the light of day. Emboldened by their landslide win in 2010, the GOP launched a fusillade of new superlatives, calling Obamacare everything from the “biggest job killer in history” to the second coming of Nazi Germany.

More important, conservatives filed a number of lawsuits that snaked through the courts. In 2012, their most promising lawsuit, National Federation of Independent Business v. Sebelius, made its way in front of the Supreme Court. Though many legal scholars expressed confidence that the law would withstand Constitutional scrutiny, this certainty dissipated when legal expert and longtime Supreme Court correspondent Jeffrey Toobin went on CNN and offered a hysterical assessment of the proceedings thus far. Justice Anthony Kennedy, predicted to be the deciding vote on the Court, came out swinging and seemed openly hostile against the law.

On the day the decision came down, I was working as an assistant managing editor at U.S. News and World Report. I was supposed to be ensconced in journalistic objectivity, retreating into my “view from nowhere,” but in reality I found myself nervously refreshing SCOTUSblog, balanced on a precipice between dread and hope. When the news broke and I began to process that the law would survive mostly intact, I let out a breath I hadn’t realized I was holding.

That’s not to say the ACA escaped unscathed. States were given the right to reject the Medicaid expansion, and in the GOP’s sociopathic quest to cut off its own nose to spite Obama, it decided to deprive millions of its impoverished citizens from receiving healthcare. Also, rather than creating their own insurance exchanges, as the law had anticipated, many states pushed that responsibility over onto the federal government.

Through a combination of this unexpected burden, the delays caused by the lawsuit, and a seemingly incompetent IT firm, the HHS bungled the health insurance marketplace’s rollout. Millions of citizens flooded the site, attempted to apply for insurance, and were rewarded with error messages telling them to come again later. It’s important to note that these error messages represented an unmitigated shit show, and that at least some of the blame for that shit show could be laid at the feet of the Obama Administration. But one must also acknowledge that the Administration acted relatively quickly to fix said shit show and that, in the grand scheme of things, the botched rollout was relatively inconsequential to citizens’ ultimate ability to eventually gain insurance from the exchanges.

This didn’t stop the GOP from portraying the launch as the single greatest failure in human history, and the media was more than happy to fan the flames. Long after the ship had righted itself, Republicans were warning their constituents away from the exchanges, lest they would fall victim to the bureaucratic atrocities carried out by the federal government. Once people started getting notices that their inadequate health insurance plans bought prior to the ACA’s passage would get phased out, conservatives began repeating a pernicious and unfounded claim that more people had lost insurance than gained it. As we now know, that was a lie.

Here was the moment, though, the moment I had waited for since that day in the grocery store parking lot when an insurance representative told me I was uninsurable. I had continued to harbor dreams of self employment and entrepreneurship, and now I could obtain affordable and adequate health insurance.

I certainly still needed it. While I could go months at a time with my UC in check, I would get hit by sudden flare ups that, if not properly addressed, could spiral out of control. In one particularly bad flare, which started a little over a year after my diagnosis, I lost so much blood that I became anemic. A prescription for 60 milligrams of prednisone, the maximum you can safely take, did nothing to slow it down. My doctor eventually put me on Remicade, a powerful drug that required an IV infusion once every eight weeks.

The Remicade proved highly effective, but I was once again made acutely aware of my health insurance dependence when I read somewhere that the drug costs between $1,300 and $2,500 per dose. This drug my doctor told me I could be on indefinitely was costing my insurer up to $15,000 a year. After I had an allergic reaction to Remicade, my doctor put me on a newer drug, called Humira, that I injected into myself once every two weeks. This drug, according to sources I read online, costs $2,400 per month. That’s $29,000 per year.

Some of the medicine I take regularly

Some of the medicine I take regularly

Some of the medicine I take regularly

So yes, health insurance was a prerequisite for leaving my job, but now, with the launch of the exchanges, it was available. By May of 2014 I put in my notice (my boss talked me into staying for a couple extra months), and on August 4, 2014, I rolled out of bed and made my way to my new office, a mere 10 feet away.

Of course I still needed to actually obtain insurance. Before exploring options on the exchanges, I first checked with my former employer on the price of maintaining COBRA coverage. For those who don’t know, any employer with more than 20 employees is required to continue offering group insurance to an employee for up to 18 months after they leave a job. If an employee takes advantage of COBRA coverage, they would be responsible for the full price of the insurance premium.

I learned that the price of maintaining my HMO was $330 a month, which was well within the budget I had envisioned. I then made an appointment with a local insurance agent (the ACA entitles you to an agent, or navigator, for no cost). She sat me down and walked me through all the plans available. I knew at the time that the exchanges carried plans at various levels ranging from bronze all the way up to platinum. I walked in not knowing what to expect and was shocked to discover how affordable these plans were. Without subsidies, I could obtain a top tier platinum plan with a $0 deductible for only $300 a month.

Let’s stop and consider this for a moment. For $330 a month I could continue on with a decent HMO plan from my previous employer, or for $30 less I could get one of the best plans offered. After enduring five years of GOP lies, here before me lay incontrovertible proof that President Obama had delivered on his promise to provide affordable health insurance.

What I experienced anecdotally became reflected in national statistics. According to the CDC, 16 million people gained access to insurance as a result of Obamacare by 2015, bringing the uninsured rate to its lowest since the creation of health insurance. Around the same time, data from the Centers for Medicare and Medicaid Services indicated that healthcare inflation was at its lowest in 50 years. A 2016 study found that we’re set to spend $2.6 trillion less than initially projected by 2020. And a National Health Interview Survey found that the “share of U.S. population under 65 that reports having trouble paying medical bills” had gone down between 2011 and 2015.

Given this avalanche of good news, one would expect it to translate into a flood of positive media coverage and declarations of Obamacare’s success. Instead, the news media mostly yawned; in some cases it reported the findings, but it then quickly moved on to whatever drama was inflicting politics at the time. Still, one would think that the GOP, cowed by the fact that none of their apocalyptic predictions had come to pass, would have at least silenced their criticisms (I don’t think any of us ever expected them to admit they were wrong). Instead, conservatives doubled down on their attacks. They were constitutionally unable to mention Obamacare without appending the word “disaster” to describe it.

Anyone engaged enough to follow politics has experienced anger when politicians and pundits use misleading information to further their agenda, but for me, proclamations of Obamacare’s failures sometimes sent me into fits of apoplexy. Here was Donald Trump, whose grasp of healthcare policy could only be described as childlike, repeatedly referring to the ACA as “the disaster known as Obamacare.” Here was Paul Ryan, who has somehow painted himself as a good-natured policy wonk, tweeting that Obamacare was “hurting” people right now. Through a combination of ignorance and lies, the GOP was maligning policies that were saving between 18,000 and 45,000 lives per year. I was one of those people being kept alive. The word “anger” can’t even begin to describe how I felt watching Republicans repeat these falsehoods.

Still, I could take comfort in the fact that, as long as a Democratic president had the ability to wield their veto pen, most of the law would remain safe. Throughout the entirety of the 2016 election, Hillary Clinton held a safe lead over Trump, and when the Washington Post published a video recording of Trump bragging about his penchant for sexually assaulting women, the race seemed all but over. During the campaign, Clinton promised to “strengthen” Obamacare once in office, but with such an intransigent GOP congress, I doubted she could get much done. Obamacare in its current form, however, would at least live on.

But then the unthinkable happened. Donald Trump won.

I’m not going to pretend to know what will happen to Obamacare in the coming weeks. Some reports indicate that the GOP congress will defund the legislation on day one by implementing some kind of delayed timeline. But there’s also anecdotal evidence that the GOP congress is slowly coming to grips with the magnitude of what they’ve promised their constituents — that in some alternate reality there’s a “replacement” plan that will defy all mathematics by managing to increase the number of those insured while both lowering costs and doing away with the individual mandate. When Obama was in power they could allow this alternate reality to exist in the abstract, but now they’re staring down the barrel of repeal and realizing they’re about to take insurance away from 20 million constituents. The trap they set for themselves is about to spring.

I’m doing what I can to stop it. I’m calling Congressmen and donating to healthcare advocacy organizations. On January 21, the day after the Inauguration, I’ll take up my signs and march on the Capitol with my fellow progressives.

But, for the most part, the future of the ACA is out of my hands, and all I can do is wait and see. And as the law’s future hangs in the balance, I thought it was important to tell my story about how the Affordable Care Act intersected with my own life. Now that I’ve done that, I only have one more thing to say:

Thank you, President Obama. From the bottom of my heart, thank you.

Simon Owens is a tech and media journalist living in Washington, DC. Follow him on Twitter, Facebook, or LinkedIn. Email him at simonowens@gmail.com

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