What will happen to cancer patients if the Affordable Care Act is repealed?

The Affordable Care Act (ACA) saved me from financial devastation.

As it becomes clear that the ACA will likely be repealed, and soon, I can only hope that at least two of its core principles survive.

Prior to the ACA, insurance policies typically included a "lifetime cap" on how much they would pay on a behalf of a covered patient. Oftentimes, this amount was $1 million. This sounds like a lot. But when you face cancer in the United States, massive expenses pile up very quickly.

When my first husband was diagnosed with bladder cancer, he went through about two years of intense surveillance, small surgeries, and frequent tests. Bladder cancer recurs at a higher rate — 50-80 percent — than other cancers. This means lots of follow up. We received a steady stream of bills.

But it was with the metastatic diagnosis, that the medical bills exploded. A ten-day hospital stay (with half of it in intensive care) was billed at nearly $400,000. A single chemo infusion was billed at more than $3,000. CT scans cost thousands of dollars. Other expenses: numerous emergency room visits (some requiring an ambulance) and hospital admissions, weekly lab tests, visiting nurses, a variety of prescriptions to offset chemo side effects, palliative care specialists, visits from occupational therapists and purchases of equipment like a walker.

From an insurance perspective, we were luckier than most. Thanks to a cushy, employer-based plan, most of our expenses were covered and we shelled out reasonable co-pays.

This was a couple years after the ACA had eliminated lifetime caps. Had the ACA not been in place, we would not only have faced the horror of the disease but I would have also become a widow with a lot of debt.

I believe it is inhumane that we require those facing a difficult illness to choose between treatment and financial ruin. Most of us would choose the latter. The topic of "financial toxicity" is discussed by a panel at nearly every oncology conference.

The excitement about immunotherapy drugs is often tempered by their extraordinary cost. A $10,000-per-month drug was the only chemo that actually worked for my first husband. But Blue Shield of California denied it multiple times because it was not F.D.A. approved for bladder cancer (although it was approved for other cancers).

We paid out of pocket and then appealed to the California Department of Managed Care, a state agency that oversees H.M.O.s in California. It took the state three days to overturn the Blue Shield decision and reimburse us what we had paid. The state required Blue Shield to pay for the drug going forward.

For these reasons, I really cannot empathize with people who complain about the ACA. I understand the many problems with premiums and exchanges and the dwindling number of insurers participating. These problems are very real and need to be fixed. But those who say government has no meaningful role in the health insurance market are those who have never received astronomical medical bills.

Prior to the ACA, you could be refused insurance coverage because of a prior illness. Or you might be able to buy coverage but it wouldn't pay for any expenses related to that prior illness. This meant that most people who had cancer could not buy health insurance for years after their diagnosis. I hope that is not the situation to which we revert.

In the months leading up to this year's election, policy discussions were minimal. But policy is what matters; it becomes very real when you are sick. I've talked with a lot of cancer patients in the last few years and I haven't heard a single one complain about the policies enacted by the ACA.

If you don't like government involvement in healthcare, here's an idea for how to live your values: if/when you are eligible for Medicare coverage, refuse it. And encourage your parents and grandparents to do the same. That will help get the government stay out of your healthcare.

Just hope that you don't get cancer.

Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network and the Research Advocacy Network. She lives with her husband, Tim Louwers, in Virginia's Shenandoah Valley and San Francisco. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over 900,000 patients and caregivers.

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