Twelve Years Later, Surviving Cancer, and Attacks on the Affordable Care Act

About five years ago, I walked into a doctor's office with a cough and walked out with a stage four cancer diagnosis. Without the Affordable Care Act, today I would be bankrupt or dead.

Over a decade ago when I headed out to Little Rock, one of the lives I would eventually save was my own.

We are bone-tired of battling for every inch of progress. And we still don't live in a country where everyone can get the health care they need and deserve.

The AFL-CIO sent me to Arkansas as a campaign staffer in 2009, to learn how to do communications work and push for labor law and health care reform under the first unified Democratic federal government in a generation.

I traveled around the state, putting together and participating in events with partners including AFSCME and other unions. I met amazing families like Kelly and David Arellanes, who lost everything and had to declare bankruptcy when their insurance company refused to cover her treatment for a closed-head injury. Their story was all too common in the days before the insurance regulations of the ACA were in place, when millions of Americans were at the mercy of their unregulated insurance companies. As a healthy thirty something, I had no idea this would eventually be my life too.

After the AFL-CIO I made my way as a self-employed consultant. Learning the lessons from my time in Arkansas, I never went without health insurance. I knew all the ways in which an insurance company could refuse to cover you, and yet I kept the faith and kept up with premiums. Thankfully I was able to switch off of a junk plan and onto the ACA in 2014. If I was still on that junk plan, I might not be here today.

In 2017, newly arrived to Las Vegas, I was diagnosed with cancer. Instead of helping people tell their stories, now I was the story.

The day after my first chemotherapy treatment, while I recovered on my couch and contemplated how bad things could get, Republicans in the US House voted to repeal the ACA. I was so drained.

That kicked off the summer of terror, where every two weeks I'd go to the doctors for another dose of poison to kill my cancer (and hopefully not me). And every day I'd be glued to the television and internet, to figure out whether I'd be able to keep the insurance that was keeping me alive.

My hair falling out around me, my body getting frailer and frailer, my anger and fear burned hotter. My Senator, Dean Heller, waffled around and then caved to the pressure and stood for repeal.

Millions of us lived in the terror of this moment, depending on our insurance to stay alive. More and more patients came forward and shared their stories, and demanded to be heard.

Ordinary people can be capable of extraordinary things when our very existence is at stake. There was a whole generation of Americans that wouldn't have been alive prior to the ACA. We refused to be quiet, we refused to be ignored; we protested, we rallied, we attended town halls, we bared our private wounds in public in order to be finally seen. At last in a late night vote that summer, I watched John McCain answer our cry and put a stop to repeal in the Senate.

Yet this ending was a mirage. Republicans in the House and Senate floated plan after plan to gut Obamacare. And those of us in the direct line of fire were inconvenient and irrelevant to their calculations.

In yet another run up to yet another plan, I had the surreal experience of getting up one morning to find out the President of the United States, Donald Trump, had blocked me on Twitter.

The courts forced him to relent, and now we live in an equally strange world where you and I can be on Twitter and the former President is banned.

After their final attempts at repeal in 2017 failed, things quieted down for a bit. Many of the people responsible for the legislative attacks on our care back then are no longer in office - from Trump on down to my former Senators Dean Heller and Cory Gardner.

However, Trump Republicans like Senator Ron Johnson of Wisconsin, say the thing out loud that they are all thinking. They've just been lying in wait all this time, and if they get back into power, they will try again to destroy the ACA.

We are so weary of fighting these same battles over and over again. But giving up is not an option, when our bodies are the stakes.

I am very fortunate these days. I just saw my oncologist, and I'm doing well at the four year mark of remission. But many of us live now in the borderlands between sickness and health, which is a stressful enough place to be. 133 million Americans have pre-existing conditions of various levels of severity.

I'm uninsurable for the rest of my life if the ACA goes away. If insurance companies ever get the opportunity to pick and choose their clients, cancer survivors with a history of both chemo and radiation will surely be last on their list.

So we cautiously celebrate the ACA's 12th birthday. With the understanding that we all are more fragile than we look, and nothing in this life is guaranteed. Not freedom from pandemics, not one more birthday or anniversary is promised. We are bone-tired of battling for every inch of progress. And we still don't live in a country where everyone can get the health care they need and deserve. But on this day, I'm glad to still be here and glad the ACA is too.