roll the dice

I thought I already had my fair share of insurance problems. I have already spent many an hour and many a tear on coordinating the two plans I had when I was diagnosed, on changing to my parent’s plan the first chance I had, and then on getting booted off my parents’ plan upon turning 26.

I thought that the hours and tears I have already spent on insurance would somehow exempt me from having any more. I also thought that outsourcing any insurance problems to my parents would mean that there wouldn’t be any more insurance problems because my parents would handle them. Parents can do anything, right? Even when you’re 26. Mostly, I thought that paying a ridiculous amount per month for a premium for a really good plan would guarantee me a year free from the nightmare that is insurance problems.

Notice how I said “nightmare that is insurance problems” NOT “nightmare that is cancer.” Shouldn’t it be the other way around?

There is no such thing as “my fair share” of insurance problems. There is no debt of hours or tears that you can redeem for a free pass from insurance problems. Paying a lot doesn’t mean you get a lot of insurance coverage free from problems, it just means that you pay a lot.

I rolled the dice that gave me cancer AND insurance problems and now, it seems, I can’t have one without the other.

This big decision about a liver transplant that has been rolling around my head for the past few weeks, now, is a secondary decision–a secondary problem–to the real problem, which is my insurance company no longer has a contract with my doctors. I don’t feel like explaining it. It’s a lot of bureaucratic nonsense about “preferred providers” and “allowed costs” and “billed costs” that I glaze over when it gets explained to me. It’s not really important.

Why doesn’t my visit to the doctor just cost what it costs? OK–so it doesn’t, and this is where contracts come in. It’s a behind the scenes thing and I don’t care what you do behind the scenes to make the system “work,” none of that is my problem. My problem is that continuing to see my doctors is going to be a hassle. There must be thousands of people having this problem right now. And many thousands more who won’t know about it until they get a huge bill, because, somehow, this “small” issue of contract negotiations didn’t warrant mentioning in a letter.  We got a letter about the mail-order pharmacy changing, but not the fact that the people who write those prescriptions to the mail-order pharmacy–to any pharmacy–can’t be the ones writing those prescriptions anymore after December 31, 2011 at 11:59 p.m. With a few months notice I and so many others could have done something about it. Protested. Changed insurance plans. Something. Because right now–at this moment, at almost 7:00 on a Tuesday night when everything is closed–i’m stuck. It still may be that things will change. But right now, I am overwhelmed. I don’t want to change doctors. I have come this far–these 15 months–with my “team.”

My team of doctors are still the ones who I trust, who I have developed relationships with, who know my case best. I can’t get that anywhere else now, 15 months, 1 big surgery, 8+ rounds of chemo, and 5+ scans in. Yes, as hard as it may be to believe, my cancer doesn’t go away just because the contract between my insurance company and my doctors has ended. It seemed like the woman on the phone from the insurance company today thought that was the case. Well, sorry–it’s still there. It didn’t get the memo about the contracts just like I didn’t.

I’m getting off track. See, the “real” problem shouldn’t be these insurance problems. It should be that my problem, the “real” problem, my only problem, is I have cancer. I really can’t handle much more than that. Especially if I can’t roll the dice again.

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14 Responses to roll the dice

  1. Paul Glowiak says:

    I think they should be ashamed of themselves, but I know they are not. The insurance industry has to be overhauled, but as long as the people who write the legislation are in their pockets, not going to happen.

    I’m sorry you have to do through this, but don’t give up hope.


  2. Krupal says:

    Talk to your doctors and see which insurance providers they are on; and see if you can’t move your insurance to them. Now that you are 26, I suspect the insurance costs will be fairly similar from place to place.

    I was lucky to be 14 when I was diagnosed; so my parents’ insurance covered me throughout treatment, then my employer (Boeing) took over a few months after I graduated college. That’s another possible way to attack this problem; I don’t know if many part time employers in your area give medical insurance, but some might, and it might be worth looking into a part-time job for that alone. If this is feasible; depends on how much time college is taking up,

    If you are still needing help; let me know, I might be able to find some doctor contacts in the LA/OC area that can help you out.

  3. David says:

    This is really fucked up! How can we help?

  4. lindsey says:

    Thanks all for your concern! My family and I are doing everything we can think of… hopefully one of these avenues will work!

  5. slockwoodg says:

    If I see an insurance company lobbyist on the street I’m going to punch them in the face.

  6. lk says:

    I don’t live in the U.S., so forgive me if my details are off but sounds like the insurer doesn’t have a contract with your doctors because they are priced too high. Being a long time customer of this team of doctors maybe they could drop their price so your insurance company could use them?

    I don’t know how you would go about this but just an idea,

  7. As if having to deal with cancer wasn’t enough, U.S. goverment, with it’s insurance’s complex politics, seems don’t mind making life even more difficult. I’m not from U.S., but I’m aware of this through tv, newspaper and internet.
    It seems almost like people needed to be warned by their doctors at the moment of the first diagnose: “You have cancer, but, worst of all, now you have insurance problems. That being said, I recomend you, besides all cancer treatment, a psychologist for your “insurance” treatment assuring your mental health.”
    Don’t give up, Lindsey! Don’t let those problems take away your happiness! Try to focus on what you like and the good things you want for your life. This would clear your mind for a while, giving you strenght to continue.

    Marcelo Victor

  8. Jessica says:

    I found your blog through your former neighbor and my friend Debbie. I can’t pretend to know what you are going through and my health problems look like a minor boo boo compared to yours but I had to comment about the insurance companies. I have epilepsy (among other things…still waiting on a diagnosis, Crohn’s disease, ulcerative colitis, who knows…) and I was running low on my seizure meds so I called the mail order place up and asked to refill my prescription. 36 hours later they call back and said they need more information. So I do. They ever so calmly tell me that my bill will go from $30/month to $741/90 day. I would like to say I held it together and didn’t say anything rude. I lost my mind and told the guy on the phone that if I had a seizure that it was his fault and that I hoped he was happy with himself. Not very mature or understanding. It’s not his fault, he doesn’t make the rules. But I was angry. I didn’t ask to have epilepsy. I would love not to take the medicine but the reality is I have to, for the rest of my life. My doctor was very understanding and is switching me to the generic and we’re going to see how it goes. She hasn’t had any patients who have had problems with it but other folks have. I seem to be her exception on a lot of things so I’m nervous. She said perhaps we shouldn’t be occupying wall street but the insurance companies. Touche, doc! Best of luck, fighting the man!

    • lk says:

      Yeah you touched on the problem there, your medication is overpriced. Your insurance essentially pushed you to act in a way you would had you been paying the cost yourself in full for the drugs rather than the insurance bearing most of the cost.

      Rather than occupying insurance companies you may want to go after the source of the problem – overpriced meds.

  9. Joe says:



    Stand still. The trees ahead and bushes beside you

    Are not lost. Wherever you are is called Here,

    And you must treat it as a powerful stranger,

    Must ask permission to know it and be known.

    The forest breathes. Listen. It answers,

    I have made this place around you.

    If you leave it, you may come back again, saying Here.

    No two trees are the same to Raven.

    No two branches are the same to Wren.

    If what a tree or a bush does is lost on you,

    You are surely lost. Stand still. The forest knows

    Where you are. You must let it find you.
    by David Wagoner

  10. Ian says:

    Maybe it would be worth looking at treatment options in Europe for your condition, in particular the Netherlands.,16747,0.htm

    I live in the UK, we have a National Health Service, and it’s scandalous that the richest country on the planet doesn’t have the same – or better.

  11. The Buddha says:

    lindsey no doubt you already are aware of insurance advocates — people who help patients with major health issues navigate the insurance imbroglio. Agencies like this:

    I never used one, but some of my co-patients did and in a few cases the advocates were extremely helpful. Also, check with your patient outreach office at your hospital.

    Sucks that you have to deal with the insurance stuff. I wish I could tell you it gets better, but, with respect to the insurance, it doesn’t.

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