Life Was a Gamble Before the Affordable Care Act

In February 2008, long before the Affordable Care Act became law, I was diagnosed with triple negative breast cancer. “Triple negative” means that it tested negative for certain hormones, and is a type of particularly aggressive cancer that primarily affects younger women and African-American women. Even though my cancer was Stage 1, my oncologist told me that because of its size and aggressiveness, I had a 30% chance of dying if I didn’t go through chemotherapy, and a 15% chance of dying even after 5 months of rigorous chemo.

That’s a one in seven chance the cancer would kill me. I was only 26 years old.

That number haunted me for many months. I couldn’t enter an elevator with six other people without thinking, “One in seven. Is it her? Or is it me?”

Luckily, I had health insurance — or so I thought. I was a third-year law student and my mom had purchased a $1 million policy to cover me. My mom, a smart lady with a master’s degree who works in a hospital, knew better than most that any serious medical coverage can easily cost hundreds of thousands of dollars, so she wanted to make sure that no matter what, I was set.

What neither of us knew was that buried deep in the fine print of that gorgeous $1 million policy was an astonishing coverage limitation. My $1 million policy from Assurant Health would pay out only $100,000 PER CONDITION.

Do you see the sleight of hand? Sure, I bought a million dollar policy, but it would pay only $100,000 for anything to do with my breast cancer treatment. The only way I had $1 million in actual coverage would be if 10 separate catastrophes afflicted me in one year: the cancer diagnosis, then getting hit by a bus, then breaking a leg, then diabetes, then a freak kitchen accident, then early-onset glaucoma, then arthritis, then a terrible boating accident, then appendicitis, and finally an unfortunate incident of scurvy. Not very likely, huh?

What my mom had really purchased was a $100,000 policy that called itself a $1 million policy.

There were other limitations hidden in the fine print. My policy would not pay for me to have genetic testing to see if I had the BCRA 1 or 2 genetic mutations, which would inform my mom and sisters whether they had a merely elevated or an astronomical risk of being diagnosed themselves. (I paid the $800 for the test and thankfully found out I did not have the mutation). It provided no coverage for me to ensure fertility preservation by freezing my eggs. And most upsetting of all, my policy provided zero coverage for prescription drugs. Not for my pain pills after surgery, and not for my anti-nausea medication Emend, which successfully kept me from getting sick at chemo treatments but cost $300 per pill.

Assurant Health also sent me forms to fill out to try to prove that my cancer was a preexisting condition so that they could drop me altogether — they failed because it wasn’t, but even the attempt frightened me terribly, putting paying for treatment up there with the cancer itself as my biggest worries.

As my mom could have predicted, $100,000 was nowhere near enough coverage to get me through this life threatening illness. Chemotherapy started in April and by May my annual limit of $100,000 had been paid out. Chemo was scheduled to go until August. How would I get treatment and pay my medical bills?

I was lucky. When the insurance company turned its back on me, I found unexpected generosity at my local hospital. I did chemo at Montefiore in the Bronx, which considers itself a community hospital and doesn’t turn anyone away because they can’t pay. They required me to submit the bills to my insurance and to apply for Medicaid, but when I got denied for Medicaid, Montefiore asked for nothing more. If they had charged me for my remaining care, it would have cost hundreds of thousands of dollars and I would probably have had to declare bankruptcy as countless individuals did because of their pre-Affordable Care Act medical bills.

Other people and organizations were incredibly kind. Family & friends from back home generously sent me checks (this was before GoFundMe) to help cover my costs. The law firm I had been working at part-time during the school year kept my paycheck coming that spring when I could no longer work, and let me work in the summer knowing I’d be out every Tuesday for chemo. I received some healthcare expense reimbursement from the SAMFund and the Healthwell Foundation, and the American Cancer Society gave me free wigs. Friends drove me to the Bronx and sent gifts for every week of chemo, including a calendar with a big black Sharpie to cross off the days until treatment ended. I felt supported and loved, and that helped me enormously in getting through the financial difficulty.

Despite Montefiore’s generosity and despite the fact that my Assurant Health out-of-pocket expenses were supposed to be limited to a maximum of $4,500, I ended up with over $25,000 in expenses that year. It made my graduation from law school and entry into the work force (via a relatively low-paid federal clerkship) much more stressful and difficult than it should have been. Didn’t I have enough to worry about with the 15% risk of death? With trying to decide whether to stick with wearing my wigs or whether to rock a teensy tiny pixie as my hair finally grew back?

And here’s the thing. At the time of my illness, I was a law student interning for a top New York law firm. If any of Assurant Health’s actions had been illegal, I could have gotten a referral for a health care attorney and taken legal action. But everything they did to me was perfectly legal. Insurance companies know how to take care of themselves.

My diagnosis and treatment were all before President Obama’s Affordable Care Act had been enacted. If it had been in place when I got sick, I would have been protected in numerous ways. First, because I was only 26 at diagnosis, I could have remained on my mom’s better health insurance plan. Second, Assurant Health would not have been permitted to impose their arbitrary cap of $100,000 on my treatment: I would have been financially covered all the way through chemo. Finally, Assurant Health would not have been permitted to deny me coverage for my prescription drug benefits, which were so essential to my treatment and my recovery.

That’s why I think it’s a sick joke when Republicans talk about repealing Obamacare (the nickname for the Affordable Care Act) as providing more “consumer choices.” What repealing Obamacare will really do is provide consumers the option to get legally scammed by powerful insurance companies all over again. Health care is not like any other product that you shop for: it’s complicated, and you often don’t know what is serious and what’s benign. In my case, breast cancer is “supposed” to feel like a small, hard, unmoving lump. Mine was large, soft, and moved around. Everyone thought it was a benign cyst, until I got it removed and found out it was cancer. Guaranteeing basic coverage and eliminating arbitrary limits is just common sense; that’s why it’s how health care works in every other developed country.

Americans have busy lives these days, with school and work and family commitments. If Obamacare is repealed, then under the name of “consumer choice,” citizens will have to pore over prospective contracts, because if you miss footnote 14, subpart C, at the bottom of page 58, then whoops, you will be out of luck and won’t have the health insurance you thought you signed up for. Is that really how you want to spend your time as a health care consumer? That is not health insurance, it’s a lottery ticket where you pray you won’t get too sick that year. Health insurance is far too important to be a guessing game where the deck is stacked against you and the rules can change at whim.

One of the common criticisms of the Affordable Care Act that I hear is that young and healthy people are having to pay too much. I hear that they are the “losers” of Obamacare. But that is dead wrong. I was one of those young, healthy people — with a million dollar policy, no less! — and the pre-Obamacare system left me out in the cold. Yes, premiums have gone up under the Affordable Care Act, but young people are now getting real coverage, not the useless piece of paper that I got, that only provided security as long as I never got sick. I would rather have paid more to receive REAL benefits in 2008. What a targeted reform of the Affordable Care Act could do is to help middle-class families with their health insurance costs by further extending subsidies to the middle class, not by eviscerating the consumer protections that we currently have and promising to figure out a replacement “later.”

Over time, the terror that the phrase “one in seven” had planted so deeply in my heart loosened its grip, until I eventually noticed that the fear had gone away entirely. This type of cancer tends to recur in the first five years or not at all, and I’m 9 years out from diagnosis. That doesn’t mean I’m entirely in the clear, though. The harsh chemo drug Adriamycin (dubbed the “red devil”) that I took can cause leukemia or heart damage down the road. And of course, if Obamacare is repealed, I will be one of the estimated 52 million Americans who will become uninsurable due to my preexisting condition. This scares me and my family deeply. The Affordable Care Act is the only thing protecting me and millions of other people from falling victim to predatory health insurance companies once again.

I was trying to do the right thing. I was trying to be a responsible consumer and get a large amount of insurance coverage. I failed, and millions more consumers will be scammed just like I was if Obamacare is repealed.

We must never go back to that. We won’t.