I developed a pre-existing condition in 2013 after a lump in my neck I'd been ignoring swelled to the size of an apple and I was unable to keep food down.
Several PET scans, a biopsy and dozens of needles later, the official diagnosis was stage IV non-Hodgkin's lymphoma. In addition to the tumor in my neck, I had seven more in my intestines. I began chemo the day of my diagnosis.
I'm in remission now, but I'm not medically cleared until I've made it five years without a recurrence. The Affordable Care Act ensures that, if I lost care, insurance companies couldn't deny me on the basis of my "pre-existing condition" — cancer.
This month marks three years since I finished chemotherapy. To celebrate, I'll eat sushi, a meal I couldn't have during chemo. The Republican-controlled Congress, for its part, marked my milestone by voting on the American Health Care Act.
Under what's proposed in the AHCA, I could be subject to increased costs for health care because I had cancer. Dramatic increases are unlikely for me because I have the luxury of a progressive state government in New York, which is likely to retain Obamacare-era cost protections. But if I were exposed to higher costs due to a pre-existing condition — as millions in other states are positioned to be — a recurrence of lymphoma could literally cost me more than what 97% of Americans make in a year.
Moderate House Republicans were coaxed into voting for the AHCA because of an amendment that prohibits insurance companies from denying coverage to people with pre-existing conditions. But it would not shield us from paying higher costs (as the ACA does). Higher costs can be triggered by a lapse in coverage, which could arise from circumstances outside a person's control, such as getting a new job. New insurers can't deny people who've had a lapse like this, but that insurer would have no obligation to charge them the same as a person without pre-existing conditions.
People like me, who have pre-existing conditions and are insured through the individual market, could be, in certain states, only offered coverage through a high-risk pool. These insurance pools mean limited coverage with high deductibles. Timothy Jost, an expert on health law at Washington and Lee University, told the New York Times that, for people who fall under these criteria, "health care itself would remain unaffordable" under most GOP-supported health care proposals.
In fact, the Affordable Care Act created a $5 billion high-risk pool as a stopgap when it was signed into law. It covered only 100,000 people but had to be suspended when it ran out of money. According to the Center for American Progress, should just 5% of people currently in the individual market end up in a high-risk pool, it would completely overwhelm the AHCA's proposed funding.
So what happens when I'm left uninsured and my body goes haywire, creating millions of rapidly dividing cancer cells?
Cancer treatment is an extremely individualized science, which makes it impossible to make a generalization about what it would cost the average person. But I can tell you what it would cost me.
Should my cancer return, I would need another six rounds of EPOCH, a specific chemo regimen developed for people with aggressive B- and T-cell non-Hodgkin's lymphomas. One week of EPOCH drugs without insurance coverage would cost me $10,000, according to Memorial Sloan Kettering Cancer Center, the hospital that treated me three years ago. And that's just the drugs themselves; that figure doesn't include fees for nurses who assist with the infusions, any treatment of possible infections, hospital stays due to complications like fever or the Neulasta shots that cost $10,803 apiece and would be required after each round of chemo to stimulate my body's production of white blood cells.
Then, should I be in remission again after six courses of chemo — a process which would likely take 16 weeks — I would need the bone marrow in my body replaced in order to prevent a third recurrence of cancer. Thanks to a scare I had last year, I know I'm an ideal candidate for an autologous stem cell transplant, in which my own stem cells would be harvested, frozen and put back into my body via vein infusion. That price is nearly impossible to nail down, but with the help of Sloan Kettering's billing department, I came up with a conservative estimate of $62,260, which includes harvesting the cells, tumor depletion and the transplant of the cells back into my body. That doesn't include any fees for storage or cell processing, which would likely be necessary, but are difficult to predict.
But wait, there's more: To prevent infection, recipients of a stem cell transplant at Sloan Kettering are required to stay in the hospital for 30 days following the procedure. For that, I'd be paying $500 a night for a private room, which is a pretty basic requirement of quarantine. Again, this doesn't take into account any additional procedures I might need based on complications that come up along the way, nor does it include the necessary cost of seeing my oncologist several times a week in order to ensure that my treatment goes as planned.
All this gives us an an extremely conservative estimate of $202,078 — more than the vast majority of Americans make in a year.
All this gives us an an extremely conservative estimate of $202,078 — more than the vast majority of Americans make in a year — to treat a recurrence of cancer that, if it happened, would do so entirely out of my control.
Much of the Republican rhetoric around the American Health Care Act centers on the cost burden of the ACA, or lowering premiums for people who are healthy. But according to the National Cancer Institute, nearly 40% of Americans will be diagnosed with some form of cancer in their lifetime, which means if you've ever met four people, odds are one or two of you will get cancer at some point. For a long time, Republicans have boasted of their fiscal responsibility, but lawmakers would be wise to consider that their decisions also have a human cost.