My Wife Has Cancer. I Need to Know: Will She Have Insurance On January 1st?

On February 16 of last year, I was in a New Orleans hotel room preparing for a meeting when my wife Becky called and said simply, “I have cancer.”

We knew it was possible, but that didn’t in any way lessen the impact of those three words.

I have cancer.

Everything that was right and comfortable was in that instant washed away by a million questions with no answers. At a time when we needed nothing more than certainty and clarity, there was only confusion and doubt.

Upon landing in Philadelphia hours later, I called to see how she was doing with her newly diagnosed breast cancer. Feeling numb, I managed to make one other call soon after landing. Not to friends. Not to family. Instead, it was to our insurance company.

That’s right: Other than my wife, the one person I most wanted to speak to in the world was a Cigna call center operator.

We hadn’t even had a chance to meet with her oncologist to discuss potential courses of treatment, but we had questions because we had recently changed our plan to carry higher out-of-pocket costs and lower deductibles. We needed answers to those questions so we could go about worrying about more important things.

What procedures are covered? Are the doctors at the cancer center in plan? What is the maximum out of pocket? What other limits should we know about?

A 15-minute conversation later, we were comfortable that insurance wouldn’t be an issue and had a decent understanding of what our share of the costs would be. At a time of absolute fear and confusion, our insurer provided a moment of comfort and clarity.

That is the kind of financial and emotional stress that millions of people face every day in the United States. That is also the kind of financial and emotional security the Affordable Care Act was supposed to provide — especially to those who currently lack health insurance. 

Instead, a botched website rollout coupled with millions of cancelled insurance plans has introduced significantly more fear, confusion and anger into the health system than previously existed.

Millions of Americans are being told they have to sign up for insurance under the Affordable Care Act or they will be fined. And millions more are receiving stark letters from insurance companies saying their plans have been cancelled because they don’t meet the requirements of the regulations drafted under Obamacare.

All of this just seven weeks before tens of millions of Americans were to be insured under the Affordable Care Act.

Our family expected to be among them. I left my job in June to start my own company, and our COBRA coverage runs through the end of 2014 — but we thought we could get a better plan that better meets our needs at a better cost by shopping through the exchanges.

Like untold numbers of others, we tried to sign up for health insurance. Like almost all of them, we failed. Over and over and over again.

The experience — detailed here — shattered our confidence in the program, to say the least. Given the stunning failures of the last six weeks, we simply have no confidence new insurance will be there for us when we need it. The performance to date does nothing to reassure us that we will be taken care of if and when we most need it.

People need to know insurance will be there for them when they need it — whether in the aftermath of a hurricane, a car accident or a cancer diagnosis. They make investments in the future in the hope it will never be needed; but, when it is, it best be there.

Tony Jewell is the founder of Boardwalk Public Relations in Ventnor, New Jersey. He is a former corporate and state and federal government spokesman and blogs regularly at  Life in the Affordable Care Act. This post originally appeared in Medium on November 11, 2013.

12 replies »

  1. Aaron that’s one of the best parts of ACA. I you have a car wreck and arrive at the ER you get treated, but if you get diagnosed and need chemo without insurance it’s really tough.

  2. My wife has cancer too. The website not-withstanding, we are very happy that should she need to purchase individual insurance, she cannot be denied coverage. And should her cancer re-occur, insurers cannot skip out on paying for the treatment. I would think all cancer patients would be very happy about that.

  3. I agree Tom, the ACA is not the problem, nor is it the solution right now because of incompetent roll out. Before ACA would Tony have been even able to get insurance or be able to afford premiums?

  4. One more question: Without ACA guaranteed issue, would your experience trying to get insurance coverage for yourself and your wife be easier, more difficult, or about the same? COBRA only lasts 18 months so it’s something you’d have to face eventually, yes?

  5. Did you try buying directly from the insurance company? Or was your experience similar there? I found the same plans, same prices and could have bypassed the exchange completely. The only reason I bought insurance from the exchange was to show my support for health care reform. If I had an experience similar to what you describe I would have quickly given up and gone directly to BSC.

  6. It’s virtually impossible because my account is now locked, the exchange call center can’t tell me if it went through, and the insurance company says they won’t know it for three to six weeks (the 12/15 deadline for coverage 1/1 falls right in between).

    I have little faith it will happen by 12/15.

  7. Virtually impossible? That’s bad news for me. I’m also on COBRA and I just enrolled in an ACA plan this morning.

    My understanding is that these are private health insurance plans and the insurance companies are responsible for making sure they are available January 1st, just like they have every year. They already went through the regulatory hoops to have these plans available for 2013, so I don’t understand what would prevent them from doing so. I can go to Blue Shield of California and buy the exact same plans they offer on the exchange. Am I mistaken?

    I detailed my own experience in a 3-part blog post, which you can read here if you’re interested. FWIW I have no health issues, I’m just leaving the world of employer-provided health insurance and entering the individual market, which I think is a lot less complicated and safer than it was. I wish you luck.


  8. For my family: Our concern is that I don’t want to give up COBRA coverage on the bet/hope/prayer that the new plan is in place by January 1. Based on my conversation with the call center and insurer yesterday, that is virtually impossible at this point.

    Therefore, I’ll keep the COBRA coverage – even though I would prefer to have a different plan (at a similar cost).

    While we have coverage, others who were given hope do not – and they don’t know if they will.

  9. Is your concern that you won’t be able to sign up before the insurance policies take effect on January 1? Have you also been unable to buy the same policies directly from the insurance companies?

  10. Putting people through this uncertainty is cruel. The President could make things right by guaranteeing that people will be covered effective January 1st.

  11. Thanks for this, SR. Your experience is exactly what I meant when I wrote:

    That is the kind of financial and emotional stress that millions of people face every day in the United States. That is also the kind of financial and emotional security the Affordable Care Act was supposed to provide — especially to those who currently lack health insurance.

    Unfortunately, the opposite has happened for far too many so far.

  12. I am a professional and have always had a secure job and group coverage.

    Then, I stepped out into the world of freelance work and independent consulting. I expected to carry Cobra for a few months and then take another job. That was a year and a half ago. And 6months before I was diagnosed with a ‘pre-existing condition’. I suddenly discovered first-hand why people worried about changing jobs, or not having coverage, or the cost or the 18month time limit on Cobra.

    I have now had the humbling experience of being denied for insurance coverage from multiple carriers. I had no idea what it felt like for people to go from a congenial call center voice cheerfully discussing various pricing on the initial sales call where they are trying to pitch you, to the sudden shift in tone when dealing with underwriters who have are refusing to cover you after reviewing your medical records.

    I finally had to get a very limited and extremely expensive state coverage plan that is so limited, despite its exorbitant cost, that I now defer checkups until I can work out insurance coverage. I had hoped that’s what the ACA coverage would be.

    To be clear, I am deeply grateful. Until recently, I had no idea what people experienced with the humiliation and fear of lacking coverage and knowing that I can at least have some basic coverage helps. But while it is better than no coverage, as you start digging in, you discover that many hospitals and doctors are not taking the plans, and the ability to cover any non-emergent care outside of your state and your care options are actually very limited.

    And certainly, this shouldn’t come at the expense of many other people who are now staring at the exact same fear that I have been experiencing for months.