Susan J. Demas
When I was healthy, I had the freedom to live anywhere in the country. And so I did. Today, my cancer diagnosis means my first priority has to be staying alive — so now, I am a Coloradan.
I was fortunate enough to be able to move to Denver earlier this year. It’s a beautiful state, and Colorado also has more protections for people with pre-existing conditions than my former home in Nevada.
I got my start in Michigan politics, volunteering for John Kerry’s 2004 presidential campaign and then as the internet communications director for the 2006 re-election campaign of U.S. Sen. Debbie Stabenow (D-Lansing). You might remember me from the former Michigan Liberal blog. And I was on the board of the Washtenaw County Democrats back in the day.
When I was in my 30s, I moved from city to city whenever I wanted. As a digital consultant, I had the opportunity to live anywhere with good WiFi. Many of my friends shared this privilege, from my coworker formerly in Argentina, to a friend who moved to Italy after the 2016 election, and to many more friends who left New York City or Washington, D.C., to return to their hometowns to settle down and start families.
Honestly, it was pretty great — but everything changed in 2017 when I was diagnosed with stage 4 Hodgkin’s lymphoma.
Thanks to Republican attacks on our access to health care, my body had to fight cancer while I had to fight for my health insurance. After my diagnosis, I went through several months of chemotherapy and then radiation treatment, and was declared in remission early last year. I am lucky for my body to have been able to endure that. I am lucky that the Affordable Care Act (ACA) enabled me to receive that treatment.
I am lucky to still be here.
However, the thing many people don’t know about remission is that you will be looking over your shoulder for the rest of your life. I cannot let cancer sneak up on me again — but if it does, I need to make sure that I have access to the health care that I need to survive.
This fear is my new normal.
Whenever I cough, I have to wonder: Is it nothing? Or is the cancer back? Or did the chemotherapy treatments wreck my lungs, and now I have Chronic Obstructive Pulmonary Disease or some other after-effect?
Then if the overthinking is making my heart race, I have to think more about the long list of cardiac complications that I could face from my series of treatments. When I can’t sleep at night, is that insomnia? Stress? Something else?
This terror is exhausting — and so is waking up every day, wondering what fresh attack the Trump administration has made on my health care.
At the end of last year, I watched in horror as Republican attempts to dismantle our health care system gained traction in court. National conservative leaders, including the President Trump administration, pushed a Texas lawsuit that could tear down the ACA and leave millions of Americans without the care that they need — including me.
If Republicans are successful in destroying the ACA, there are only six states — New York, Massachusetts, Virginia, Colorado, and now New Mexico and Maine — that have fully duplicated ACA protections on the state level.
The legislation is in the works in other states, but I can’t take those kinds of chances with my own life anymore. It cost a million dollars to keep me alive in 2017, and it might well cost more with harsher, scarier treatments if my cancer comes back.
At the same time, I was facing the end of the open enrollment deadline (Dec. 15 in most states). Time was running out, and since I couldn’t depend on my health care continuing in Nevada, I needed to decide where to live.
So I went through my choices and moved to Denver. I need to make sure I have affordable, quality health insurance for the rest of my life, however long that life is. I can’t risk going without it and I can’t risk living in a state that doesn’t have my back.
Nobody should have to live like this. And now, the Trump administration is trying to destroy the legislation that is keeping me live.
As the ACA turned nine years old last week, I reflected on how lucky I am that I am a newly minted Coloradan. I also look forward to holding accountable any politician who forces the 130 million Americans with pre-existing conditions to have to live like this.
My eyes are on President Trump, my eyes are on congressional Republicans, and my eyes are especially focused on my new U.S. senator, Cory Gardner (R-Colo.).
Like most of his fellow Republicans, he supported more useless tax breaks for billionaires, but voted to take away the health care protections we needed. His answer to our broken health care system is to discard patients. We deserve better, and we will have the opportunity to hold you accountable. We do not forget.
I am a health care voter, and we will always remember where he did not stand when we needed him to protect our care. I’m proud that my former boss, Debbie Stabenow, understands just how important health care is.
A version of this column originally ran in the Advance’s sister publication, the Colorado Independent.
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