How Affordable Is the Affordable Care Act If You Have Health Issues?

In February, an ad ran in Michigan featuring a local cancer patient named Julie Boonstra who was pleading with voters to protest Michigan Representative Gary Peters’s vote in favor of the Affordable Care Act. She explained that her insurance plan was canceled due to its requirements and that a new plan via the ACA exchange would be unaffordable for her. Even though I was a New Yorker, I watched the ad with interest—because like Boonstra, I have been treated for cancer and have significant and ongoing health costs as a result of my cancer history. And last July, I received a letter that said my plan, like Boonstra’s, would be canceled as of January 1. I didn’t know what to make of it.

I had been a supporter of the ACA—better known as Obamacare—and had looked forward to seeing what health-care improvements it might offer to me and millions of others. Like Boonstra, I had not been expecting a cancellation letter. And like her, I was not happy with the news.  

This wasn’t the first time I’d received such a notice. Two years earlier, in the spring of 2011, the not-for-profit freelancer’s group through which I’d been insured sent me an email that opened: “There’s no easy way to tell you this.” The insurance plan I’d selected through them would be cancelled by the insurance company in three months. Not just for me—the entire plan was ending, booting everyone on it. The company gave no reason for this, nor did it have to. Other plans my group offered would be continued, but these did not provide the level of coverage my plan had. 

This to-be-canceled plan had higher premiums but no deductible. Like Julie Boonstra and others who have ongoing health-care costs and/or a significant health history, I need to have some sense of my month-to-month maximum health-care coverage costs—I can’t risk getting hit with huge bills out of the blue. The only plan my group offered with no deductible was the one I had—the one that was ending. 

I had three months to find new coverage. I researched and scrambled until I found a new plan—I landed on one that was far from perfect but provided just enough of what I needed. 

And here I was again, facing another plan cancellation. I tried to stay calm. The letter said that my insurance company would be offering an alternate plan; I could roll into that one with no action on my part. Details of that plan were not yet available, but maybe, just maybe, it would be suitable enough for my needs that I could default into it and avoid another scramble.  

In mid November, my insurance company sent the details I’d been waiting for. The premiums for the plan they would offer were similar to what I’d been paying before, but there was a significant deductible, and my maximum out-of-pocket yearly costs would be a lot higher. I had about a month to put ACA coverage together. The following month, I got a break when the deadline to sign up for ACA coverage in New York was extended from mid December to the 23rd. However, reports of glitches and site issues were not exaggerated. I was not on the national exchange site, but the New York site had issues of its own. 

Friends helped. One poked around the government site for several hours, trying to see what would be available to me; others who’d already succeeded in securing ACA coverage, across the country, shared their tips and the phone numbers that had led to actual people. 

Another cancer-survivor friend advised me to call my oncologist’s base hospital and ask what ACA plans they would accept—then I could look only at those plans and avoid the ones that would not be relevant. Great idea—but when I called the hospital with this question, I was transferred to several different departments before finding that the answer was: “We don’t yet know.”

I got as far as I could. The exchange site said my application was being processed. The phone system stopped letting me hold and simply said my call would be returned. On December 23rd, I was stuck in this application limbo and remained unenrolled. 

I could take the plan I was poised to roll into, at least for a month. Except that I get a monthly shot of a drug called Lupron. And it is expensive. Or at least, it can be. Actually, how much it will cost if not covered by insurance is anyone’s guess. A fellow cancer-survivor friend, who received the same shot, was told she would be charged somewhere between $900 to $2,000 in a high-deductible health plan and then received a bill for $4,099.51. 

Taking this automatic-replacement plan, even for one month, would expose me to at minimum the cost of that shot in January—with no way of knowing what that cost would be.

And then, at 11 p.m.—an hour before the deadline—I found that my application had been approved. In addition, the deadline to sign up in New York for ACA coverage had been extended by one more day. 

On the day before Christmas, I spent my morning looking for a plan that the site said my doctors, at least, would accept. I found a few I liked, and from them I chose one. It offered solid coverage. No deductible. And with the tax rebate I was offered, it would be more affordable than my last plan. I enrolled, then spent the afternoon wrapping presents and singing songs, relief filling my every breath.

Three days after Christmas, I went to get my expensive monthly shot at the hospital. I informed my nurse that I’d signed up with an ACA plan. But within an hour, the billing department called: While the exchange site had been correct that my doctors would take my new plan, the hospital, it turned out, would not. 

I asked when this decision had been made: I was told it had happened a day or two earlier. That, I pointed out, was after the deadline to sign up for ACA coverage for January. The person in the billing department acknowledged this. “We’re not taking the plan,” she said, unapologetically. “That’s what you need to know.”  

The next month, I called the hospital to discuss these new problems. I finally found someone there who could help navigate through the morass and find out how my January dose would be paid for. I had to switch plans, yet again, but since I was already in the ACA system, it wasn’t as much of an ordeal. The hospital arranged for my January insurance to be accepted as a one-month exemption, and when February came, my newest plan kicked in. So far so good—and it comes with a coverage perk that, as a cancer survivor and as someone who has to navigate the U.S. insurance system, I can really use: free therapy. 

So, Julie Boonstra, I appreciate what you’re saying. This has been a huge hassle. But give your new coverage a chance. Having successfully acquired a decent ACA plan myself, I then guided several other friends through their ACA applications in subsequent months; all ended up with better coverage than they had had, for prices they could afford. It seems that, like my friends and me, Ms. Boonstra, you’ll likely find you do have a better plan, and more plan security, than you did before. (According to a journalist at the Washington Post who ran the numbers, Julie Boostra will end up saving over $1,200 per year.)

It’s not a perfect situation by any means, but it is a step forward in U.S. health-care coverage. And for that we can take a deep breath and say together: Thank you, Mr. President.