It Shouldn’t Have Happened to Me, But It Did

Ed. note: This post was updated March 21, 2014.

“You have stage IV cancer.”

“Well, how many stages are there? Five, six, ten?” 

“There's only four.”

Two months after proposing to my wife and just three months before my 36th birthday, those were the first words spoken to me by my oncologist.

A check-up with my family doctor only days before spawned a whirlwind of appointments, scans, and tests. I sat, listening in awe, trying to wrap my head around the reality of balancing fear and uncertainty with wanting to fight, but not really knowing how. I learned that I was now a stage IV, metastatic colorectal cancer patient. A cancer that usually afflicts those 65 and older wasn’t just inside my body, it was growing and making its way through my body, spreading from my colon to a tumor in my liver and another one in my lungs.

I was otherwise healthy my whole life – 35 years old, an athlete into college, professionally doing important work I’d only dreamed of, and finally about to be married and start my own family. Fighting to survive a catastrophic disease was NOT part of my plans.

Thankfully, I was fortunate enough to have insurance through my employer and my cancer was treatable and curable, they said. Thankfully, because I had insurance, they said, if I gave them the next year for treatment, they’d give me back the rest of my life.

But imagine if I didn’t have access to health insurance through my job. Until that week, just 20 months ago, I could have made the case that I almost didn’t “need” to spend money on health insurance. Technically, with only yearly check-ups and mostly needing only over-the-counter medicines, I could have afforded to pay for my health care needs myself.  

However, if I hadn’t already had insurance the day I had that conversation with my oncologist, I would probably never be approved for insurance in the individual market, or I would have had to pay outrageous premiums just for access to the same services that would save my life, because I didn’t just have cancer, I now have a preexisting condition.

When you get sick, getting better is hard. I mean really hard. And it’s hard enough to focus on fighting the disease and still maintain your ability to work enough to provide for your family. Add to that battling through medical statements and fielding calls from hospital billing centers in order to just get in a place where you can get the medicine to fight. All the while knowing that, once you survive, you could face a lifetime of high premiums and difficulty getting insurance coverage. Until you’ve read a medical bill from a hospital bed, it’s hard to understand the insecurity that millions face every day. But now, for the first time ever, all Americans will have access to quality, affordable health care, that can’t be denied because of preexisting conditions.

People diagnosed with cancer have a 70% greater chance of being alive five years after they are diagnosed if they have health insurance at the time of diagnosis. To date, saving my life has taken 20 months – including eight months of chemo, six surgeries, and radiation – and has cost over $900,000. Of that I have only paid a little over 1% out of pocket because I had health insurance when I was diagnosed. Without that, I would have bankrupted my family just to stay alive and with the limitations on preexisting conditions and lifetime caps that existed before Obamacare, there’s no telling what life would have been like for us moving forward.

Expanding access to affordable health care has always been personally important to me and it’s part of why I moved to Chicago in 2004 to work for then-State Senator Barack Obama. Since then I’ve watched the country change and heard Ted Kennedy speak about his life’s work and his support for the President’s vision for health care at the 2008 Democratic convention. Four years later I watched the 2012 convention while undergoing chemo treatment, and I saw the country reelect President Obama and ensure the legacy of Obamacare while lying in an intensive care unit after my first surgery. It’s been a decade since I first heard the President declare that it makes all our lives poorer when one American doesn’t have access to affordable health care, and it’s been an even longer path to get the country to where we are now, affordable care for all – but I know it has never been more important to America’s future.

Access to affordable health insurance should not depend on luck or economic status; it should be available to everyone. Surviving catastrophic illness should not be an option for only a few; everyone should have that opportunity. Before Obamacare, millions of Americans who were uninsured or underinsured, gamble was their daily reality. Now, for the first time ever, all Americans will have access to quality, affordable health care, and they can’t be denied coverage for preexisting conditions or have their coverage cut off because they’ve hit a lifetime cap on medical expenses. This is a fundamental change in our country and a foundational shift in the health care and economic opportunities that are afforded individuals and families. This is wonderful progress and the American people deserve no less.

Shop for coverage or just learn more about how you can get covered by visiting HealthCare.gov.

Michael Robertson is Deputy Assistant to the President and Deputy Cabinet Secretary.
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