choosing my battles

Because I am choosing my battles today and everyday, I am choosing to write about an aspect of the healthcare system that drives me crazy instead of stressing myself out trying to fix it.

In a perfect world I would see my oncologist once per month and there I would get my blood drawn, get the results, get my monthly injection, and not have to deal with going to the doctor again til next month. Except for a scan here and there or a visit with the surgeon.

My health takes my first priority, yes. But i’m not just a cancer patient anymore like I was when I was recovering from my surgery earlier this year. I have other shit to do. I am a liver. Right now, for example, I have finals. I can’t spend all my time on the phone trying to change and make appointments and get blood test results.

As you might have surmised, this is not a perfect world because just this morning I found myself sitting in the waiting room of my endocrinologist’s office waiting to get my injection. Just like last month at this time. It did get me out of the house well before 9 a.m. on the Monday after Thanksgiving–which was good for the week before finals. Yes, I usually only have to wait a half-hour or so. And I like the nurses. And the shot itself only takes about 15 seconds or so, but it takes time to mix it and let it soak and fill the syringe… it’s an unpleasant shot. But I guess what really bothers me about the whole ordeal is if I didn’t call each month to set up the appointment, no one would know the difference. No one would call and find out why I didn’t get my shot. No one would care. If I told my oncologist, he would care, but he wouldn’t know whether or not I get my shots independent of me telling him.

Every month I put off calling to make the appointment to get the shot because every time I call they’re confused about why i’m calling: “Did someone call you about making an appointment?” “How do you know you need to come in?” “Wait–you bring the shot yourself?” I keep track of this myself because no one else would keep track of it if I didn’t. And I bring the shot myself because if I got it from the office my insurance wouldn’t cover it and i’d be stuck paying–what was it?–$12,000? Something astronomical.

This is the medication–well, a different formulation of the same medication–that at the beginning (last year at this time) was so important for me to start taking that I had to inject it myself, into my belly, three times per day. It was awful. But it helped control my symptoms for a little while.

Now, I have to practically beg to get it–I can’t very well inject the monthly shot myself. It goes in the butt, with a giant needle; the consistency of the medication is like wet sand, and it burns. Ow. The mail-order pharmacy calls me every month to set up a delivery for all my chemo drugs, including this shot. Why can’t the doctor’s office–or the oncologist’s office–call me when I need a shot or call me when they need to tell me important blood test results without me having to hound them?

Well, the answer, according to my health care policy class, is health insurance reimbursements. Doctor’s offices don’t get reimbursed for things like phone calls and emails and patient maintenance, so they don’t do it. Or, they can’t afford to do it. My oncologist’s office already has 5 people employed who deal with insurance–they don’t get reimbursed for those people’s time either. And the nurse practitioner doesn’t get paid every time I page her for my blood test results. And my oncologist doesn’t get paid for the time he spends on the phone getting my scans approved. Last time, he told us this was a way for insurance companies to keep costs down–because getting a busy oncologist on the phone with a health insurance doctor is no easy feat. So less scans get ordered because of it.

On one hand, I feel like all these doctor’s offices make enough money. Haven’t I already paid them thousands on top of what my insurance has paid them? What’s a two-minute phone call worth, anyway? But on the other hand, if i’m thinking like an economist, i’m thinking: the market responds to incentives. If health insurance companies were to reimburse for call time and email time and maintenance time, more doctor’s offices would start doing it. And in the long run, it would probably bring costs down. If I wasn’t so diligent about doing everything i’m told to do and getting this shot every month even though they make it difficult, I probably wouldn’t be doing as well as i’m doing. Which would probably mean more trips to the hospital, more appointments with my oncologist, and more blood tests, which are all costly.

There are lots of chronic conditions out there–diabetes being one–that are fairly straightforward to treat, but it’s up to the patient to (in the case of diabetes) take the insulin (for type I) or the pancreas-stimulating medications (for type II), eat right, and do whatever else their doctor tells them to do. Pancreatic neuroendocrine cancer is not straightforward to treat, but you get the idea. Diabetes requires maintenance or it gets worse. Doctor’s offices can’t help with the maintenance–except in the form of a monthly appointment at the most–because they don’t get paid for it. They can’t afford to hire someone to work with patients to help them fit diabetes care into their lives.

For my healthcare class we read an article about a few diabetes management clinics that opened up in New York in the 90s. They helped patients fit diabetes care into their lives. And the patients loved them. And the doctors loved them, because they were helping patients dramatically. But financially, they failed miserably.

This doesn’t make any sense.

Writing this post has made me feel lazy and want to choose this–this care management and follow-up–as one of my battles. But that involves changing the health insurance reimbursement for such activities and trying to get doctor’s offices to hire people to do this, which I wouldn’t even begin to know how to do. I would also like doctor’s appointment consolidation to be one of my (smaller) battles, but I may lose my resolve once I spend 15 minutes on hold and the person who answers doesn’t understand what i’m trying to do.

So, I guess i’ll just stick to trying to get dates with celebrities for the time being. And, you know, taking my chemo and being nice to my body. And somehow beating cancer. I don’t usually like to see my cancer as a battle–I prefer the marathon analogy–but for this post I will make an exception.

And finals can be one of my battles too: because it’s that time of the quarter again.

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12 Responses to choosing my battles

  1. Tracy says:

    Hi Lindsey – I found your blog via your Joseph Gordon Levitt video (for the record – he better say yes!). Great post – I am a health and welfare benefits consultant and work with large corporations on their benefits strategy. You have hit on something that is fundamentally broken with the system yet continues to go without focus. I applaud you for being so vigilant about your care and ensuring that you get your medications in a timely manner because frankly a lot of people that have illnesses like yours or chronic conditions like diabetes aren’t compliant with their prescribed regimes and they end up sicker, requiring more care and incurring a lot more expense than they otherwise would…yet no one has come up with a good “fix” for this problem. On the flip side of this, we are also heavy utilizers of health care because my two year old has CHARGE Syndrome and we see 10+ specialists to manage her care and in addition to my “real” full time job, my second, full time job is calling doctors for text results, scheduling, appts, etc. etc. In any event, and as an aside, you should ask the prescription drug vendor to mail that injection directly to the doctor’s office since its not an injection you can administer yourself. They should want to do this for two reasons: 1) It ensures the injection is not administered by someone who isn’t trained to deliver it and 2) it helps to ensure the patient is compliant (though not something they have to worry about in your case). And then hopefully the end result would be that the doctor’s office would reach out to YOU to schedule these appts and have it ready when you get there since the onus in now on them to ensure you get it (at least in a perfect world). Best of luck to you, I hope you have a happy, healthy holiday season and best of luck on your finals!

    • lindsey says:

      Thanks for reading, Tracy. I’m worried the doctor’s office would lose the medicine or something–is that possible?

      • Tracy says:

        No – they won’t lose it because my guess is that they are getting medications for other patients this way and at $12K a pop they are going to want to be very careful with it. The idea of having the prescription drug manager handle this medication in this sort of way is part of a Specialty Drug Management program – the purpose behind it is making sure that patients who need specialty drugs (drugs like yours which are very expensive and/or require very specific administration) get them AND take them. These programs are also supposed to help manage things like proper storage of the meds and proper administration. The latter item is actually why I am surprised that the prescription drug manager (PBM) wouldn’t send the meds to your doc anyway since you cannot administer it yourself.

  2. Saso says:

    If it makes you feel any better, you’re not alone. I have to play fetch with my doctor every 12 weeks. Get the prescription, go to pharmacy and then back to my doctor to get the shot. Well, at least now I don’t need to call the pharmacy and order the injection in advance, they have it on stock. So 21th century :)

  3. HK says:

    A tiny additional thought: when you’re there for one appt, maybe they could schedule you for next month’s? Then u’d at least save that confusing phone call.

  4. Patrick says:

    Lindsey,

    A little extra caring goes a long way in health care. Some doctors have social workers who typically help with outreaching patients. I don’t see why someone can’t take the time to follow up with you and the other patients. It should be a part of providing comprehensive treatment for the whole person.

  5. no thanks says:

    Hello Ms. Miller,

    I assume you have SHIP or some form of privatized care, but what options are available for those of us who can’t get quality low-cost care? The federal Pre-existing Condition Insurance Plan is a nice PPO for those who can make the monthly premiums and other costs, but I am skint and without support of any kind (aside from a low-paying temp job). Any thoughts? You seem to be doing great; I commend you for your efforts.

    Best Wishes,

    Worried Bruin Alumnus

    • lindsey says:

      Hi–I’m not really an expert, but here are some thoughts. Maybe another reader who is an expert can help you out better than I can. I assume you have a pre-existing condition and that’s why you can’t get insurance? The Affordable Care Act requires health insurance companies to cover people with pre-existing conditions beginning in 2013. It might not be low cost until the state health insurance exchanges begin, and even then it might not be low cost, but it’s an option. Have you looked into Medicaid or, if you live in CA, Medi-Cal? Those are public programs for low-income individuals. There’s also MRMIP, which is like PCIP. It might also be expensive. Sometimes temp companies offer insurance to people who work there for a certain number of hours. It depends on the company–but you could look into that too. Hope that helps a little…

  6. G. Smith says:

    Hi,
    There are a lot of people who have the same disease you do, and one of the problems you are running into is the one we all run into all of the time – perhaps I should say the plural instead.

    1. You look good. When I’m sitting in the crowd of thousands at the Univ of Mich Cancer Center with their masks on, missing hair, it is tough because with Carcinoid Cancer you look good.

    2. We, as a society of Americans have approached disease screaming “cure me” or “get it out of me”. The bad news is Carcinoid is currently not curable, but the good news is the symptoms can be managed. There are two possible communities you are missing out on, the first being at http:://acor.org listserv under Carcinoid where things like symptom control and possible treatments which really work are discussed and you can find a lot of useful information or even make a friend who has what you have and understands what you are going through. But in my book, one has to decide that this is something one can manage and it will be better.

    3. I was diagnosed with this disease in 2000, and have been stable since 2005. I have seen a lot of people come and a lot of people go and here are a few suggestions I have for you:

    a. From reading your blog, you are not seeing someone who specializes in this disease. Statistically speaking, if you want to increase your survival possibilities, you should see one of the specialists and not wait until it is too late like Mr. Jobs from Apple did, or the founder of Wendy’s Dave Thomas.

    b. Join the online group or look on http://carcinoid.org to find a local support group. Caring for Carcinoid is also a very good site.

    c. Read the carcinoid.org information. There are tests and things you should know about, like have they ever done a KI-67 stain to find out what type of Carcinoid you have. Did you know that about 20 Percent of people respond to Chemo-therapy, and so many do not pursue this as an option. There are a number of options out there for you, so please, become more informed and manage your disease before it manages you.

    I could go on an on but on the ACOR server, we have a specialist who answers questions and he says that we – as patients have a handful of cards we can play with this disease to keep us going. Discover what those cards are, and work with someone who specializes in this disease and could very well live for a long time.

    Possibilities to look into:
    1. Medicare
    2. Novartis has an in-home injection service, they also help with meds if you cannot afford them. Search for their help number on line. Sandostatin LAR is expensive. If you are paying yourself, you should look into Lanreotide LAR – it is cheaper and you can give the shots yourself.
    3. Health exchange, has it been set up in your state?

    Sorry to ramble. Good luck. Don’t sit back and let this happen to you, you are a smart and wonderful person who should be able to happen to it.

    • lindsey says:

      Thanks for your recommendations. Now that i’m doing better i’ll start to look into things I didn’t feel up to looking into before. For the record, I am seeing good doctors who know about NETs and they did many of the necessary tests from the beginning.

  7. Tisa says:

    Thanks for sharing your story. I feel like I have the same challenges with managing the medical system. Take care, Tisa

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