Life: Reducing my burden on society by stabbing myself in the thigh

January 29, 2010

I just returned home from the pharmacy. I hate the pharmacy. I use the Walgreen’s at 39th and Belmont, not because of joy it brings me but because it’s the only one nearby that is open 24 hours a day, and I am not fond of trying to work my life around other pharmacies’ proscribed schedules. The Walgreen’s at 39th and Belmont is a horrible place. Searingly fluorescent lighting, 79¢ pairs of socks, Wet ‘n Wild cosmetics, wheelchair rentals, off-label beef jerky. I go at odd hours and often encounter sad sacks just out of the hospital. They come by cab and lurch in, sometimes quite literally bleeding or still in gowns. I have seen the police called several times; every time, a number of the clenched, devastated faces in the prescription waiting area carry the aura of methamphetamine habits.

Tonight I was walking out (past the Ped Egg, four different (all flimsy) varieties of panini grill and waffle-weave shirts (2 for $12)), mindlessly flipping through the jetsam of paperwork and receipts and bags and noticed, once again, like I do sometimes, the notices:

“Your insurance saved you $339.99.”

“Your insurance saved you $91.99.”

Sometimes even:

“Your insurance saved you $569.97.”

These are not one-time expenses. These are drugs that, ostensibly, I may be on for the rest of my life. There are the enormous blue pills I have to take four of per day; these theoretically act like Advil for my inner tubes. I don’t know because as far as I can tell, I feel the same. I want to stop taking them but my gastroenterologist drew me a sketch of what could happen if I did. Even in ballpoint pen, the drawing was enough to scare me straight.

There are the slippery beige diamonds that regular people, even regular people with problems, usually only have to take for a two-week course. This is pantoprazole, better known by its trade name, Protonix. It works by “irreversibly blocking the hydrogen/potassium adenosine triphosphatase enzyme system” (Wikipedia). That is, it keeps me from producing too much stomach acid. If I don’t take it in the morning, I typically feel stomach pain by the evening. I’m hooked on this stuff like crack.

The list of prescription meds I’ve had over the past few years marches on: Zofran, the miracle anti-nausea drug; oxycodone, you probably have heard of that one; prednisone, the moon-face bloating sweaty steroid; 6-mercaptopurine, a drug so grim my insurance considers it chemotherapy.

And pharmacy costs are only a little slice of my medical life.

My medical bills and statements make a big pile.

In 2008, my medical costs exceeded my gross income. 2009 wasn’t quite as bad, and I am also blessed to have seriously good health insurance. But I do stop and muse: What if I didn’t?

Every two months I am supposed to spend half a day in the St. Vincent Cancer Center with an IV in my (now scarred and elusive) vein while my circulatory system sucks down Remicade, a drug of a class called “biologics,” which, despite having been on the market for 11 years, is still in patent.

Remicade costs $4450. Per dose. Add to that a sundry six or seven hundred bucks for the privilege of hanging out in the hospital for four hours, and—this is not a cheap situation. If I went every eight weeks like a good little ducky, this would equate to about a $35,000 cost each year. According to the Federal Trade Commission, consumers spend about $40.3 billion per year on biologics.

In a report released in June of 2009, the FTC argues that the 12- to 14-year patent lifespan for biologics is too long, and provides some guidance for the marketplace introduction of the biologic analog to generics, so-called “follow-on biologics.”

Why is the patent lifespan on these drugs so long? Why are they so outrageously expensive? Part of the answer lies in what these drugs are: not like regular drugs. Their name—biologics—refers directly to what they are: drugs created from biological bits and bots of other animals and even sometimes humans. In my case, Remicade is made from mouse proteins. The processed protein is one that attracts and blocks the awesomely-named Tumor Necrosis Factor (TNF) that is the cause of a lot of my Crohn’s grief.

Because the patent here is not exactly on, say, a chemical compound the way it is with more traditional drug innovations, the situation is murkier. In the world of biologics, the complexities are in the process used to create the drug, not entirely the drug itself. The process is a big chunk of what the patent is. If the patent ended tomorrow, these drugs would not suddenly cost four bucks at Safeway; the process required to synthesize them is complex and by extension costly. But they would likely be noticeably cheaper.

With all of this in mind, I’m almost entirely decided that I am going to switch from Remicade to another biologic called Humira. You probably think I’m joking, but Humira is seriously made from humans. It differs from Remicade in that I wouldn’t have to go to the hospital and that it only costs about $800 per dose. That sounds great until you realize that a) I will have to stab myself in the thigh, and b) I have to inject a dose every two weeks, not every eight. Still, it is in the end more convenient and almost 30% cheaper.

OK, about this stabbing thing. I am fortunate enough not to be particularly skittish of needles, but the concept is still a bit off-putting. Nominally, I could choose to shiv myself in the belly instead of the thigh, but who in their right mind would want to do that?

I’m a little worried that this post might bring out the health care fury in people. I hope that’s not the case. I’m not proposing a solution. I’m just saying.

5 Comments

  1. gwalter says:

    After my little encounter with emergent hypertension and the local ED (http://www.daddytude.com/2010/01/not-good), I was humbled by the costs covered by the Oregon Health Plan. My caregivers didn’t hesitate to give me quality care, despite my current poverty situation. However, when I found out that some of the meds prescribed are the most expensive on the market, I was humbled.

    Like you said, well, I have no fix – but it is amazing to watch.

    (Keep writing Lyza!)

  2. @rmbwebs says:

    Hang in there, Lyza. I’m curious to discover what your Humira experience is like. I’m coming up on 6 years on Remicade.

  3. Ian Kovtunovich says:

    Hi Lyza,

    That is an impressive/depressing coctail of frightfully expensive meds you’re stuck on. My own maintenance-medication burden would clock in at a measly $12k a year, about which I am fond of complaining. My father, who has multiple sclerosis, takes weekly self-injected medication, the uber-tech-sounding interferon beta 1a. This, if I recall correctly, costs somewhere on the order of $20-$30k per annum. He recently worked out an arrangement with the company that makes it whereby they are paying his copay/deductible for the stuff, which has the double bonus of saving him loads of cash and knocking out his out-of-pocket max in something like three months. Perhaps your biologics could be had through a similar arrangement.

    Anyway, yeesh.

    Cheers,
    Ian

  4. Amy says:

    Forgive me for butting in, but I’m curious if the needle for your thigh is the same as for the stomach? I ask because I had to take insulin during a pregnancy and had to inject into my stomach and it was no big deal at all. Seriously. If that’s what you have to do, thigh or stomach, would be something you probably could manage just fine. Again, forgive me as I am a new follower and am not sure of your medical condition but just wanted to give you a little confidence if you do have to go through with the self injections. I’m sure there are a variety of needle types but diabetes needles are sooo tiny you’ll never even feel it. I was dreading it terribly and was glad to have the relief that it wasn’t a nasty old needle.

    My husband has a serious illness and he has lots of medical bills as well, and it’s just so ugly. Disheartening. And that’s with insurance.

    Sheesh. Sorry.

    Amy

  5. Molly says:

    stumbled upon your site from a link by mental_floss. I recently moved and my new pharmacy is the Walgreens at 39th and Belmont – thus making me feel instantly connected and clicked the RSS button right away. Good stuff so far.

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