A recent CT scan made me realize that the clinical trial extending my life effectively excludes all but the most privileged cancer patients.
I used to weasel out of scans. Chalk it up to trepidation about radiation and possible kidney damage, along with paranoid suspicions that such scans don't yield definitive pictures. My oncologist and I had agreed to fudge on frequent testing. But the clinical trial did not.
When I registered for the CT, a woman wearing a badge that read "financial navigator" handed me the requisite forms to sign. I explained that the CT should be billed to the Phase I trial, since I was undergoing it so the investigators could measure the efficacy of their drug. Unable to reach the trial administrator by phone, she asked, "Can we put it down as a self-pay since you can change it afterwards?"
The clock was ticking. I would need to start drinking the gallons of what I call Kool-Aid, the drink that people under 140 pounds need to gulp during the two hours before an abdominal CT. I knew that I had to concede but wanted to know how much it would cost. "Oh," she replied, "I couldn't say."
I signed the form and, after receiving the paper bracelet, trudged down to the basement and began the long haul of swilling and waiting. The Kool-Aid — in science-speak, the gastrografin contrast solution — brought to mind my friend Judy, vomiting the barium milkshake she had to ingest in a different hospital. It was impossible to keep down, she reported, but her oncologist insisted on it. I touted the less viscous Kool-Aid and she asked a hospital radiologist who replied, "Sure, you could try that instead." We shook our heads in disbelief at his nonchalance.
Running repeatedly to the bathroom, I thanked my lucky stars that I did not need to take the drugs prescribed for people with allergic reactions to this test. The CT would be brief and painless, I knew, and therefore none of the anxiety of the first few scans plagued me as the technician accompanied me down the hall to the scanner.
"I can't tell when I can get a nurse to access your port," she said, positioning me on the narrow plank facing the gaping mouth of the huge machine. "There were massive cutbacks two months ago. Would you rather wait or have me stick you?"
At least I was fully clothed while making this decision. Praying a vein would work, I eyed the triangular bar hanging from a pulley over my head while the technician established a line and took cover in another room.
The conveyor belt moved me so deep into the bowels of the cave-like mechanism that the overhead metal bar, which I clutched with upraised hands, clanged against it. Only my head remained just outside of the giant doughnut.
"Take a breath and hold," a mechanical female voice said. Did they change it to a male voice for men? I wondered.
Conveyed back out, I heard, "Breathe."
Through the IV line, the technician injected another contrast agent that, she told me, would give me an awful taste in my mouth and make me feel as if I were wetting my pants, and then the process was repeated.
"Take a breath and hold."
"Breathe."
After the technician removed the needle in my arm, I limped out of the hospital determined to control my nausea with peppermint. Although I had not eaten for some 20 hours, I asked my husband to stop the car on the way home only to use a gas station restroom.
The nausea I had felt that day returned some time later when I received a bill for $4,567. Because standard practice of care for recurrent ovarian cancer includes a CT every three months, the trial did not cover the cost of this scan. At registration, I had been thinking in terms of the trial paying or me paying. Instead of saying "self-pay," I should have handed the "financial navigator" my insurance cards. Adjustments would have to be made with billing services.
My mistake at registration revealed the exorbitant price of the CT, which otherwise would have been masked by the incomprehensible maze of paperwork sent by providers. The trial exacts large expenses: it requires that people have periodic scans and does not pay for them.
How could patients who are under-insured or not insured at all be included in such a clinical trial? How could people working for the minimum wage afford $18,268 a year for CTs? If the trial were in a remote hospital, travel and lodging would raise that price tag, as would the need to take days off from work for recurrent blood tests.
Now I understand why low-income patients are underrepresented in cancer trials, although they bear a disproportionate burden of cancer mortality. For economic status is of course a barrier not only to trials but also, more alarmingly, to detection and treatment.
I made the call to billing services. I took a breath and got put on hold.
Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of "Memoir of a Debulked Woman," which explores her experience with ovarian cancer.
