Protest The Hero

[elfs]

As most people who've read my blog know, Omaha has a rare and severe form of epilepsy for which there's one drug, Gabitril, that manages to keep her seziures under some semblance of control and allows her to be coherent for most of the day. Watching her struggle with this condition for twenty-plus years, it never ceases to amaze me how she gets up every morning and keeps going, trying to lead as normal a life as possible, raising two children, being active in the community, and being just about the most awesome partner I could ever ask for.

I went to the pharmacy this Saturday to pick up her monthly medications. Since we've used up our "discretionary" pharmaceutical allowance for the year through our insurer, we have to pay full price. It came to $1177. Just for November.

There are two pharmacists and four technicians at the pharmacy. All of the technicians are women, and since Omaha's probably better informed about her drugs than they are, the pharmacists take her word for it that she knows what she's doing with them. Which means that every month, one of us deals with a technician, and every month the technician says the exact same damn thing: "Are you sure you want to spend that much money?"

Osiris wept, of course I don't want to spend that much money. But if I want my partner of 26 years to be healthy and whole and sane, I'm going to spend that much money. Period. I tell the woman, "That's what her medicines cost. Ring it up please."

This time, the woman asked, "Have you been married a long time?"

"Twenty-six years," I said.

"You're such a nice husband for doing this," she said.

If there's one thing I have in common with Honor Harrington, it's that I don't feel like a freaking hero for doing my duty. But this happens all the time. There's apparently something vaguely "heroic" about sticking by your commitment for 26 years, a commitment made with eyes open and with no mitigating circumstances.

I didn't unload on the technician because I knew she meant... well. But she reflected a sentiment that has always bothered me.

Comments

[kenshardik]

I hear what you are saying. My thought is that either (1) people have a harder time saying, "I am sorry your life has such unpleasant circumstances," than, "I admire you for what you are doing," or (2) people are simply stunned that anyone would do the right thing anymore. I hope it's the former, because the latter is kind of depressing.

[elfs.livejournal.com]

Unfortunately, I think it's the latter. That's my thinking after the train incident, and the one woman who expressed surprised that I had put up with it "for so long." Geez, what am I supposed to do? Abandon her? This isn't emotional estrangement or irreconcilable differences, it's a plain ol' (rather dramatic) physical disability, one I knew she had going in.

[pixel39.livejournal.com]

There are a lot of people who will leave their partners because they don't want to deal with the partner's health issues, and a lot of people who will stay but bitch about it constantly.

[fayanora.livejournal.com]

USA's society is so individualistic that anything collectivistic is either seen as a threat or as a heroic level of loyalty/compassion/what have you. The same society that sees it as heroic that you'd pay $1000 a month for your wife's medicine balks at taxpayer money paying for said medicine. It is very effed up.

[resonant.livejournal.com]

When we have customers from the US visit our factory in Canada, they often make me take them across the road to the local clinic, where they get a Canadian doctor to write them a prescription. We then go upstairs to the pharmacy, where they get several month's worth of pills.

You may wish to see if the cost of a weekend trip north might be worthwhile. Two reserved Amtrak coach seats, plus baggage fees for two bikes, is $172 round-trip, tax included.

[resonant.livejournal.com]

Never mind - Health Canada doesn't currently permit the sale of Tiagabine in Canada, so you wouldn't be able to get it here anyway.

[acelightning.livejournal.com]

[hydrolagus.livejournal.com]

I'm wondering if they're required to ask you if you're sure--I also get asked it when I buy mine, which are about a tenth of the price of hers.

[caraig.livejournal.com]

You know... I realize that health care costs money. I grok it, I really do. These life-saving procedures and drugs have a cost: Cost in training to do them, cost in accrediation and malpractice insurance. Cost in research and development and testing.

But what kind of society do we live in when it's apparently considered okay to check with someone if they're really sure they want to shell out a grand for medicine? What kind of society do we live in where we have to shell out a grand for medicine, period?

I know someone whose insurance company denied him coverage for a procedure that would let him *walk*. They said he didn't need to walk; he could use a wheelchair.

It's further sad that someone actually said that you were a 'nice husband' for sticking with Omaha. I mean, for crying out loud! Are we really becoming that dog-eat-dog a society that this sort of thing is considered heroic, or unusual, or something like that? Are the selfish and self-serving really winning the so-called "culture war?"

[lovingboth]

When it was new, the NHS was paying about £76 for 28 days at 30mg/day.

I see that one of the two patents has just expired. The second one looks - to a non-chemist - like 'here's a better way to make it' rather than a fundamental one and, ah yes, there's a court case about someone wanting to sell it generically already:

http://patentdocs.typepad.com/files/cephalon-v-sun.pdf

Never mind Canada, you could pay for a holiday here or in India with the savings.

[mouser.livejournal.com]

Anyword on the generic since this came out?

http://epilepsy.emedtv.com/gabitril/generic-gabitril.html

[edichka2.livejournal.com]

Coupla thoughts...
(1) I suppose you've contacted the manufacturer about discount or freebie?
(2) I imagine the pharmacy techs are surprised not only that you're _willing_ to spend that kinda cash, but that you're _able_ to do so. Often the willing are unable, and the able are unwilling.
- E

[omahas.livejournal.com]

The first patent has just expired, yes, and last month we were waiting to see if someone would file to have the patent term lengthened (they often do). This particular case is Cephalon's attempt to make sure that the second patent continues to hold sway over whether Gabitril goes generic (until 2017). Considering that Cephalon's response was only filed in September of this year, I expect it will still be a few months before any decision is made by the court.

Interestingly enough, I just found this tidbit regarding Cephalon. I hadn't known that they had been acquired by Teva, but considering that Teva is the largest manufacturer of generics, it may be that they are intending on trying to market the generic themselves.

http://dailylocal.com/articles/2011/11/09/news/doc4ebad75b596b0598080877.txt

[bldrnrpdx.livejournal.com]

As someone who has an illness that won't go away anytime soon, and carries a fair bit of stigma (mental illness vs. physical illness), I am constantly surprised that my partner sticks by me as closely and for as long as he does. He seems intent on honoring that "in sickness and in health" thing too. I know it frustrates the heck out of him but he continually makes life easier for me to deal with. OTOH, he has a couple of physical illnesses that won't be going away anytime soon either, and are largely invisible to others, so he kinda understands about some of this.

[http://users.livejournal.com/_candide_/]

Elf, there's just so much … wrong with your situation around this medication that I don't even know how to respond.

We've turned into a nation of sociopaths, haven't we?

[mg4h.livejournal.com]

I read a blog and the author asked people to write in about what they are thankful for. One of them hit close to home, and it reminded me of this post of yours so I wanted to share.

Dear Sugar,

I am grateful every single second of every day for my husband who dealt with the news of my MS diagnosis by saying, “That’s what taking the good with the bad in our vows meant. I have your back no matter what, I love YOU, everything else we have happen in our lives is just stuff. As long as I can be there for you I can make it through anything.”

Kogi