How do you manage the cost of treating a cancer diagnosis?
By the time I was a sophomore at the University of California at Davis, I had developed a new form of anxiety: the idea that I was going to get a second diagnosis within a few months, that my doctor might be wrong, and that my insurance wouldn’t cover it.
I was worried.
But the best way to handle it was to be as honest as possible, so that my doctors would never be able to make a decision about my treatment.
So, I started by reading the standard medical literature and talking to my doctor about my symptoms.
Then I would call my insurance company, which would send me an email that included the cost.
The email was usually accompanied by a list of symptoms that my insurer would then need to pay out of pocket, including some related to my cancer diagnosis.
And the email, it would say, would tell my doctor that I had “a high-risk group of cancers” that were not being diagnosed at the time.
(If the list contained any other terms that were associated with my cancer, I would be given the option to fill in a separate form.)
This was the “doxing” I’d come to know as a form of activism.
In fact, it was one of the first things my family learned when I was in sixth grade.
And, like many of the anti-consumer protests of the 1960s, it resonated with me because it offered a powerful counterweight to the prevailing consensus: the notion that we have too much control over our health care system, that it is not our fault that we are sick.
As my mom put it, “We don’t want to be sick.”
And so, in that way, I began to think about how my treatment could be treated differently.
And I began thinking about how the “cancer diagnosis” was a form, in some ways, of “dying.”
I began questioning the assumption that we could always know for certain that we would be diagnosed with a cancer, and how that might affect my treatment, especially if I had a chronic illness or if my doctors were not on the same page as me.
“We are living in a time where the cancer is not being treated like a disease, but as an inevitability,” she said.
“If you want to die, you need to die.”
This was how I began talking to doctors about my condition.
I started calling them, in my early 20s, and began sharing my diagnosis with them.
“It’s not that I don’t trust you,” I said, “but I do not want you to tell me that my diagnosis is the one you have always believed, that you have not questioned or questioned yourself, that I have not gone through some phase in my life where you have accepted your illness and have not been concerned with the consequences of it.”
In fact I had grown increasingly worried about the idea of “living my life as a cancer patient.”
At one point, I was thinking of telling my friends and family about my diagnosis, but then, just when I felt like I was about to do that, my anxiety started to diminish.
I began reading more about my illness, I became more accepting of the way that my health care costs and treatment differed, and I began working with my doctor to understand the cost-effectiveness of my treatment in a way that would be most comfortable to both of us.
But in doing so, I also began to understand that I would have to keep my anxiety in check for the rest of my life.
As a graduate student in my mid-20s, I decided to focus my research on this topic.
I read a lot of scientific papers about the topic, and one of my favorite was a study by Harvard researchers in the late 1980s, which found that the more we learn about cancer, the less likely we are to think that our health-care system is too complicated, or that it does not work for everyone.
A couple of years later, I took an internship at the National Cancer Institute, where I studied how doctors and nurses responded to my diagnosis.
I realized that this particular form of advocacy, the one that I’d begun, was not an isolated phenomenon.
A similar phenomenon was happening at a time when most Americans were still reeling from the recession.
It was, as one of our colleagues put it to me, “a perfect storm.”
We had an unprecedented economic downturn in the 1990s that was unprecedented in its severity, and the recession left tens of millions of Americans in poverty and many others in workless households.
As the unemployment rate in the U.S. climbed from 12 percent in early 1990s to 17.5 percent by 2000, the rate of people with cancer was increasing, too.
And many of those people who had cancer did not know they had it, and many of them were not told that they were