My Year Without Health Insurance

Walking into a cancer center in search of a diagnosis can be frightening, but it gets a little less so each time I do it. I know where the good parking spots are, what departments have snacks, and which doctors tell you the whole truth. I’m highly accomplished at cancer. But last summer, for the first time ever, I walked into my cancer center without an essential tool: health insurance.

Unlike so many people in the United States, my husband and I had a choice after we joined the 26.1 million Americans who had no health insurance in 2019. I say “choice,” though all our options were bad.

We are middle-income, with an adjusted gross that fluctuates between $80,000 and $120,000. But because we are self-employed, that income gets chiseled away aggressively by health insurance. Until May 2019, the two of us were paying $25,000 a year for a “gold” plan, which we selected because it had lower deductibles for hospitalizations; I go to the hospital more than most people.

We didn’t have to cut back on essentials like food or housing to pay for insurance. But we put off non-urgent home repairs, skipped vacations, and struggled to save for retirement. Our premiums increased every year by as much as 25 percent, while the rates we charged clients for our work remained steady. We felt like we weren’t getting much out of the deal.

Approximately 1.5 million Americans belong to one of 108 certified religious health shares.

Our insurance company, ConnectiCare, would only cover half of a medically necessary CPAP machine, leaving us to pay bills of around $1,000. Even more frustratingly, my husband’s dental plan never showed up as active when he went to the dentist. He and our dentist’s staff both called multiple times about this, waiting on the line for a half-hour or more. The dental carrier said we needed to call ConnectiCare. ConnectiCare said we needed to call the dental carrier. It was like being trapped in a Beckett play.

The problem was never resolved, so Russ just skipped his cleanings. “Why do we even have insurance?” I asked.

The answer was simple: because of cancer. I’d been cancer-free for eight years, but given my history, it seemed incredibly risky to cut back on insurance. Of course, not saving for retirement is risky too. Should I let rapid cell division control my life? We were stuck paying high prices for little value, when I glimpsed a way out: an ad for a Christian health share that popped up on my Facebook feed. I’m active in Christian social-justice work, so I guess some algorithm thought I was a good match.

Approximately 1.5 million Americans belong to one of 108 certified religious health shares, according to the Alliance of Health Care Sharing Ministries. Health shares are not insurance, which means that they have no legal obligation to pay claims. Instead, members pay monthly “shares,” building a fund that is used to pay the medical bills of other members. Because it is not insurance, health shares are not obliged to honor the provisions of the Affordable Care Act. In fact, the ACA explicitly granted health shares an exemption from minimum essential coverage requirements.

Religious health shares have produced some cautionary tales of late. In January, The New York Times reported on families facing six-figure bills, with no guarantee their health share would pay. A New Hampshire man told NPR about being stuck with a $200,000 bill for back surgery, which his health share declared a pre-existing condition and therefore ineligible for reimbursement. Washington state fined a large organization, Trinity Healthshare, and banned it from operating there. Other states have issued consumer warnings. Colorado Insurance Commissioner Michael Conway told consumers that religious health shares could be “the subprime mortgages of health care.”

Consumers involved in health share horror stories tend to think their policies function like insurance, with guaranteed payments for allowable expenses. I’d done a ton of research and knew that this was not the case. No one from the health share we eventually joined, Solidarity, ever represented that it was insurance. But my conventional insurance wasn’t paying my husband’s covered dental expenses, so it didn’t seem to me that insurance was a sure thing either.

I did, however, worry about the pre-existing condition coverage, knowing that I wouldn’t enjoy ACA protections. In several phone calls, I repeatedly confirmed with a Solidarity HealthShare marketing person what was eligible for “sharing.” He assured me my last cancer was long enough ago that any future relapse would be eligible for sharing. Solidarity also did not require members to regularly attend church, as many of these organizations did, meaning that my husband would be eligible for membership too.

Health shares are not insurance, which means that they have no legal obligation to pay claims.

After two months of mulling over the decision, I took the plunge and told our insurance agent that we were canceling. She told me that she was using a Christian health share to save money and tried to sell me on membership in that one instead. So an insurance professional was doing the thing I had thought was so outside the box. That was oddly reassuring.

Instead of our premiums being more than $2,000 a month, our “share” would be less than $500. We signed up, and began to save money for the first time in a long time. We felt rich.

But my husband and I both had trouble sleeping once we cut the cord with insurance. Our worry intensified two months into our new coverage, when we submitted bills for my husband’s annual physical. We didn’t expect those to be paid, because we had not gone over our $1,000 deductible, what they call an “annual unshared amount.” But Solidarity heavily marketed how it negotiated bills down for members, often by half or more. Would they talk to the medical group to see if they could lower the amount of the bill? I tried to ask about this repeatedly, by email and voice mail, never reaching an actual human. Submitted bills weren’t showing up in our online patient portal, so we were in the dark.

The CEO of the health share sent out a series of membership-wide emails apologizing for the slowness of claim processing, promising to hire new staff and improve software. Three months later, we got an email apologizing for a phone outage and assuring members that it had been fixed. Then we got another message saying … oops, the phones actually were still down. This did not inspire confidence.

Every communication with the health share increased our suspicion that we were now living without a safety net. We’d joined in May, and would have to wait for the new year before we could re-enroll in standard health insurance. We dithered. The health share seemed increasingly sketchy, but so does heading into retirement age without any savings.

We both began ignoring minor aches and pains. My husband postponed a colonoscopy until we got a better sense of how long the health share took to pay bills, or at least answer questions. But the waiting never ended. In the seven months we were members, we were not reimbursed for a single claim.

After two of months of avoiding looking down in the shower, I realized I could no longer delay talking with my doctor about my breast. Eight years ago, I had a double mastectomy. But if anyone could still get breast cancer, it’s me. I’m an overachiever in that area. I got my first diagnosis in my early thirties, and have had a series of tumors, with aggressive pathology that makes oncologists swallow hard. It was still possible for me to get cancer just under the skin, where some breast tissue remains. And recently, my left breast had become hard and pitted.

My primary-care doctor looked at it with what, after years of experience, I call “the cancer face,” and recommended I see my surgeon as soon as possible.

Here we go again, I thought.

But instead of just the usual mortal fear, I was also terrified that I’d need to make a choice between getting treated and ruining my family financially. I’d been sending $300 medical bills into a black hole up to this point. What would happen with ones ranging into four, five, and six figures?

My surgeon examined me and quickly said, “I’m not worried about this at all.” My reconstructed breasts aren’t very good at draining fluid, so my left breast was swollen months after a minor burn. That’s what was causing the skin changes. I sprung off the table and hugged her. I had never been so relieved in my life.

What happens to all the folks in the gig economy who aren’t doing quite as well as we are, but don’t qualify for subsidies or Medicaid?

Not having cancer was my primary joy. But realizing that I wouldn’t be ushering my family into bankruptcy was a close second.

Not a believer in pushing my luck, I got health insurance just as soon as open enrollment allowed, four long months later. It’s a “bronze” plan this time around, at about $18,000 a year. As the premiums kicked in, so did a new gig that I expected would soften the blow, but the client ended up paying me less than we’d agreed. Self-employment is not for the risk-averse either.

In February 2020, after we’d dropped Solidarity, it actually did pay our primary-care providers for care we’d received the previous summer. If a human being had told us that payment was on the way, we might have stuck with it. But probably not. Our improved peace of mind may be worth $18,000 a year. Private insurance is horrible, but at least there is some government oversight. A religious health share simply requires too much, well, faith.

It looks like 2020 will be another year where we’re unable to save any money. I’m nowhere near the threshold for a subsidy under the ACA, but also nowhere near being able to pay $18,000 a year—not to mention co-pays and deductibles—without it hurting.

I’m blessed to be alive, healthy, and with a roof over my head. I will be forced to work well into my seventies, but there are worse fates. That’s what bothers me. We earn more than the median income, yet insurance costs make it impossible to build any kind of financial security. What happens to all the folks in the gig economy who aren’t doing quite as well as we are, but don’t qualify for subsidies or Medicaid?

Sketchy health shares, junk insurance policies that cover next to nothing, or no insurance at all are the only options that the present system offers them. I wonder how many of those folks are dismissing chest pain as indigestion, are taking two aspirins and calling no one in the morning, or aren’t looking down in the shower.

This story was supported by the Economic Hardship Reporting Project.