The Health Of Our Care – Notes from the Un (Under) Insured

“All hope abandon, ye who enter in!” That famous line from Dante’s Inferno seems terribly apt for many of us when we face a serious illness like cancer. Not only must we face a terrible disease and our own mortality, but we enter a frightening maze in navigating the healthcare system.

The Health Of Our Care will be an occasional column here on Fitness for Survivors. Once a week or so, I will feature someone’s experience of dealing with cancer or some other serious illness, of getting – or not getting – the care they need. This is not meant to be a platform for my (or anyone else’s) political opinions. Although I have opinions about what should be done, I will continue voicing them elsewhere, not here. 

People who have not had a health crisis have no idea how complicated and terrifying it can be. It truly is a full-time job. If you have insurance, you drown in paperwork, making sure you have all the proper forms and permissions, hoping desperately that your insurer will actually cover your medical treatments, and fighting in Kafka-esque fashion if they deny your treatments. If you don’t have insurance, you have more paperwork, plus the added stress of finding doctors who will treat you, and figuring out how you will pay for it (sell your house, sell your car, another mortgage, stop paying your other bills?). And then there are the huge number of underinsured: those people who have faithfully paid their premiums for years only to discover that what they’ve paid for doesn’t actually cover any of their necessary treatments.

So, as our fearless (or is that fearful?) leaders continue to debate the health of our care, I thought it would be interesting to tell some of the stories of how we all manage – or can’t.

And I’ll start with my story. I have insurance, and they have pretty much paid for everything. (In case you thought this would be an insurance company-bashing festival, it’s not. That would be far too simple.) Good story, right? Well, with healthcare in America, I don’t think there are too many simple, good stories.

I have an HMO with Aetna. They have covered all of my treatments/surgeries/doctors visits over the years. I have co-pays, but they’re reasonable.

A decade ago, when I was beginning my healthcare adventure, I was quite worried about my insurance. Congress at that time also was debating some aspects of healthcare, specifically Medicare reform. There were scary ads about how managed care gives people no choices about their care, and news stories everyday about how people with HMOs couldn’t get the care they needed. No opinions here about whether all of that was well-founded or just fear-mongering, simply that that was the atmosphere when I entered the ranks of the sick.

So I was scared: I had been paying my premiums for years, but would I actually be able to get the care I needed, with doctors I liked and trusted? Instead of simply worrying about finding the best doctors and figuring out my best medical options, I was worrying about whether I could afford to do anything to save my health.

Pleasantly, I was surprised. Aside from having to do a lot of running around and phone calls to get the proper approvals, I got great care. I found doctors I trusted completely, never had trouble getting a second opinion, was approved for all the procedures and treatments I needed. They covered my wig during chemo; they cover my compression sleeves and gloves. For a long time, though, I didn’t have drug coverage. So during chemo, I would buy a couple of anti-nausea pills at a time. I’d take one or two of the good pills and then switch to the less effective but less expensive alternatives, and hope for the best. But except for the no drug coverage thing (they later added drug coverage), Aetna has covered everything else.

That’s the good part of the story. But as I said, with healthcare in America, there are not too many simple, good stories.

For this very good coverage, I pay dearly, around $900 a month. Yes, that’s per month, not per year. That’s for one month, for one, single person. And that’s close to one third of my income (gross, not net). That’s right – nearly 30%! And given the economy and the financial strains for music, the fitness business, and real estate, that percentage will undoubtedly go up this year as my income continues to go down.

People who have never had to pay for their healthcare out of their own pocket, who have always had insurance through their job often are shocked; they have no idea. They don’t understand that for those of us who are self-employed, as more and more Americans are, or whose jobs no longer provide health insurance, healthcare is probably our biggest expense.

Could I just change plans? Not really. As a self-employed free-lancer, I don’t have access to group discounts. Other similar plans cost just as much. Could I switch to the often-touted high-deductible plan? No, because they don’t really cover much. They may be fine if you never actually get sick or injured. But they offer no real provision for people who need ongoing care. I’d be paying for most of my care myself.

So I feel like I can’t complain too much because Aetna has actually honored their contractual commitments, unlike some insurance companies. For more than 20 years, Aetna has had access to many, many thousands of my dollars. But when I needed care, they did what they were supposed to. It’s worked out pretty well for both of us.

I’m lucky, though. Because I live with someone, my household expenses are shared. If I lived alone, I am quite sure I would not have this insurance now. I would not have been able to afford it. At some point, I would have been faced with a choice between health insurance and having a place to live. I live quite frugally; I don’t spend money I don’t have. It’s not like I could pay for the insurance simply by cutting back on movies or shopping (I don’t really do either of those things much). It would come down to a choice between basic necessities: food, shelter, or healthcare.

So, I am pleased and grateful that I have had the excellent coverage for my health care. I am pleased and grateful that Aetna has generally covered all that they should, and been fairly easy to deal with. (this is from my perspective, I have no idea how doctors or hospitals feel about the company.) And I am pleased and grateful that I have managed, somehow, to afford this coverage. But it has come with a very big pricetag, one that we cannot all afford.


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4 Responses to The Health Of Our Care – Notes from the Un (Under) Insured

  1. WhiteStone says:

    Just a couple thoughts.

    We have “free” insurance through hubby’s retirement plan…but it’s not free…we pay $450/mo deducted from his check. It “seems” free because we never see the money. Many workers, too, are paying a premium for their “free” insurance. Sometimes “self” is free; adding family to the policy usually involves a premium of some sort. Many workers don’t buy into the work plan because they don’t want to spend the money.

    Re: breast cancer (and perhaps other cancers)…I think many if not most states have a program that covers breast cancer if the patient has no insurance. A breast cancer friend lost her insurance when she lost her job and was frantic…then she found that her state picked up for her. No cost. I don’t know if there are copays/deductions involved. And I do not know if there are income guidelines but I know it covers those who are above the poverty line.

    Ovarian cancers (at least at certain stages) can apply for Soc Sec disability payments if they have paid into the system a certain number of the previous 10 years. However, Medicare will not kick in until 2 years after approval but monthly income is welcome to those who qualify.

    Most states have an insurance plan that covers children well above the poverty level.

    You need not print this comment…it’s long.

  2. julie says:

    Yes, women’s cancers, especially breast, are pretty protected. Here in NY, we’re guaranteed coverage. All insurance carriers MUST cover care for women’s cancers. But it varies from state to state. It’s not always clear if follow-up care is covered. I certainly owe a debt of gratitude to the advocates in the past who struggled to get those rules passed. Those regulations are, quite literally, life-savers for many women.

    And you are absolutely right, employer insurance is definitely not “free”! For some, it’s deducted from their check. For others, they’ve accepted lower wages in exchange for coverage.

    One of the reasons I wanted to start this column was just to get a better idea myself, as I document these stories, of how we all manage: what resources we’ve found, what works, what doesn’t work so well.

  3. It’s just insanity to expect an individual to shell out a third of their income for health insurance. And here we are, still subjected to political wrangling about ‘freedom’ by those who reject the idea that everyone should have affordable healthcare. The Affordable Care Act is not the entire solution, but it at least acknowledges some of the problems & attempts to get at some of them. But it’s so complex. I shudder at what is going to happen when the Supreme Court takes up arguments next week to consider repealing part or all of it.

  4. Kathi, I agree with you. ACA is not ideal, but it’s a start. It at least tries to address some of the insane problems so many face, instead of simply denying it’s really a problem. I really fear how it might end up. And it will be a very long time before anyone else tries to fix it!

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