Ralph Nader, the evil continues
Jan. 3rd, 2006 11:04 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
pecuniumThis is a personal post, an upset about somethig which gores my ox, and only gores it because of the Internet.
Ralph Nader got a drug banned. He got it banned because in some people it causes liver problems.
On the surface that might not seem so bad, Vioxx, after all, is off the market because Merck decided the bad press associated with it made it too risky to keep making.
I know a little about the side effects of drugs. When my Reiter's was in full bloom I was on a number of different meds, some of them normal enough (a high-powered NSAI, for one) but used in a way which required my liver function to be monitored (150mg a day of indocin is a lot, not great for the guts, and with risks to the liver) but a careful physician and some regular tests were all we required.
The pay-off was that I could function. I was able to move, without too much pain (which is to say it was background. I didn't notice it, too much, though others did), and I could think, sleep through the night, walk; the little things.
If the Reiter's was still in force, I'd take the drugs; and the tests.
Luckily for me it wasn't a drug I expect to need which was killed.
Teresa Nielsen Hayden has narcolepsy. Her condition is ameliorated by Cylert. It is known to cause liver problems, which is why people who use it get their livers checked.
That's where the internet comes into play, and why it's not abstract to me.
If it weren't for the Net the Nielsen Haydens would be names I place (because we inhabit a smaller, non net-based world as well) but they wouldn't be people I know (and we'll leave the discussion of community, and knowledge aside for the moment), as it is they are people I like, and respect, and Teresa is, to quote Patrick, shafted.
Because good old Ralph, mister moral purity, the guy who stayed in the race; throwing it to Bush, because he saw the two-parties as equivalent, so much so that he ran again, for the same reason, he decided, over the objections of a whole lot of people who actually have to live with the effects of this drug; or the problem it relieves, they couldn't be trusted to act like adults, and make decisions for themselves.
Me, I know about those decisions. Back when my Reiter's was in full-flower I chose to take a sulfa-drug. Sulfa drugs have a high rate of allergic reaction. I knew that. I took the risk? Why? Becuase the other options were worse. I could stick the indocin... not a great idea, what with the gastric problems and the liver risk, or I could go to Remucade and get a permanent IV put in, have weekly IVs for a month and then get them every month for six months and hope that beat it into submission. The other option, toughing it out, letting my bones deform and becoming crippled.
I took the Sulfa. I ended up in the hospital. I went to the indocin. And, given what I knew, I made the right choice.
Teresa, as much as anyone I know, is able to make that choice for herself.
I am rambling. Thinking about the Rifkin's of the world, who got my movie popcorn ruined, because they think the oil it was popped in was bad for me (never mind that they let the WD-40 which is the erstatz butter remains) don't think she, or anyone else, should be allowed to consult with their physicians and come to an informed decision.
This and this are what she has to deal with. For details of the present problem read Fckng Ralph Nader, fckng Public Citizen
Nader, well he won't be persuaded, he; after all, knows best what we need, but if you want to help (if you don't know Teresa, do it for me, hell do it because it's right, and Jesus said to comfort the afflicted) you can try contacting Eveline Honig, 914-741-5680; evelinevvh@optonline.net might help (hat tip tojmhm for that).
And, should you happen to hurt Ralph Nader, I'll help for going your bail, should an alibi not be possible.
Ralph Nader got a drug banned. He got it banned because in some people it causes liver problems.
On the surface that might not seem so bad, Vioxx, after all, is off the market because Merck decided the bad press associated with it made it too risky to keep making.
I know a little about the side effects of drugs. When my Reiter's was in full bloom I was on a number of different meds, some of them normal enough (a high-powered NSAI, for one) but used in a way which required my liver function to be monitored (150mg a day of indocin is a lot, not great for the guts, and with risks to the liver) but a careful physician and some regular tests were all we required.
The pay-off was that I could function. I was able to move, without too much pain (which is to say it was background. I didn't notice it, too much, though others did), and I could think, sleep through the night, walk; the little things.
If the Reiter's was still in force, I'd take the drugs; and the tests.
Luckily for me it wasn't a drug I expect to need which was killed.
Teresa Nielsen Hayden has narcolepsy. Her condition is ameliorated by Cylert. It is known to cause liver problems, which is why people who use it get their livers checked.
That's where the internet comes into play, and why it's not abstract to me.
If it weren't for the Net the Nielsen Haydens would be names I place (because we inhabit a smaller, non net-based world as well) but they wouldn't be people I know (and we'll leave the discussion of community, and knowledge aside for the moment), as it is they are people I like, and respect, and Teresa is, to quote Patrick, shafted.
Because good old Ralph, mister moral purity, the guy who stayed in the race; throwing it to Bush, because he saw the two-parties as equivalent, so much so that he ran again, for the same reason, he decided, over the objections of a whole lot of people who actually have to live with the effects of this drug; or the problem it relieves, they couldn't be trusted to act like adults, and make decisions for themselves.
Me, I know about those decisions. Back when my Reiter's was in full-flower I chose to take a sulfa-drug. Sulfa drugs have a high rate of allergic reaction. I knew that. I took the risk? Why? Becuase the other options were worse. I could stick the indocin... not a great idea, what with the gastric problems and the liver risk, or I could go to Remucade and get a permanent IV put in, have weekly IVs for a month and then get them every month for six months and hope that beat it into submission. The other option, toughing it out, letting my bones deform and becoming crippled.
I took the Sulfa. I ended up in the hospital. I went to the indocin. And, given what I knew, I made the right choice.
Teresa, as much as anyone I know, is able to make that choice for herself.
I am rambling. Thinking about the Rifkin's of the world, who got my movie popcorn ruined, because they think the oil it was popped in was bad for me (never mind that they let the WD-40 which is the erstatz butter remains) don't think she, or anyone else, should be allowed to consult with their physicians and come to an informed decision.
This and this are what she has to deal with. For details of the present problem read Fckng Ralph Nader, fckng Public Citizen
Nader, well he won't be persuaded, he; after all, knows best what we need, but if you want to help (if you don't know Teresa, do it for me, hell do it because it's right, and Jesus said to comfort the afflicted) you can try contacting Eveline Honig, 914-741-5680; evelinevvh@optonline.net might help (hat tip to
jmhm for that).And, should you happen to hurt Ralph Nader, I'll help for going your bail, should an alibi not be possible.
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no subject
Date: 2006-01-03 08:41 pm (UTC)Yes, there's the Special Access Program but how many people are aware of it and how useful is it, really? The best way to find out is to ask so I called a number for the Sleep Wake Disorders Association and asked them.
Canadian narcoleptics can obtain Cylert through the SAP but a doctor needs to deal with what was called "immense paperwork" (which many doctors may not be interested in dealing with) and the drug is dispensed through the local hospital. This sounds totally useless for Americans.
The fellow I spoke to mentioned Modafinal as an alternative used by Canadian narcoleptics. Obviously, this may be of little or no use to tnh, depending on the details of her case. Since it is available in the US it seems logical that if it was useful to her, her doctor would have already mentioned it.
no subject
Date: 2006-01-03 08:54 pm (UTC)Narcolepsy, sadly, isn't really a disease, or if it is, it's more like CF, in that the effects are incredibly variable from person to person.
TK
no subject
Date: 2006-01-03 09:06 pm (UTC)I'm gonna be in Viet Nam soon, perhaps I can get my hands on some for her there.
no subject
Date: 2006-01-04 09:01 pm (UTC)TK