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April 19, 2007

I don’t feel two years healthier
Posted by Avram Grumer at 09:25 PM * 127 comments

Americablog found the following a few paragraphs into an ABC News story about the VA Tech killer:

Some news accounts have suggested that Cho had a history of antidepressant use, but senior federal officials tell ABC News that they can find no record of such medication in the government’s files. This does not completely rule out prescription drug use, including samples from a physician, drugs obtained through illegal Internet sources, or a gap in the federal database, but the sources say theirs is a reasonably complete search.

A gap in the what? Since when is there a federal database of drug prescriptions?

Since two years ago, looks like, and it’s not technically a federal database. In July of 2005, Congress passed the National All Schedules Prescription Electronic Reporting Act of 2005, and it was signed into law by Bush a couple of weeks later.

This authorizes grants to the states for prescription drug databases,

in order to ensure that health care providers have access to the accurate, timely prescription history information that they may use as a tool for the early identification of patients at risk for addiction in order to initiate appropriate medical interventions and avert the tragic personal, family, and community consequences of untreated addiction

Which sounds okay at fir— well, no, it actually sounds creepy right off the bat. If they’d said it was to help prevent bad drug interactions, that would sound okay to me. An obsession with other people’s addictions strikes me as overbearing nanny-state behavior.

Anyway, scrolling down to the section on “Use and Disclosure of Information”, we see that among the people authorized to check out your prescription drug history are:

any local, State, or Federal law enforcement, narcotics control, licensure, disciplinary, or program authority, who certifies, under the procedures determined by the State, that the requested information is related to an individual investigation or proceeding involving the unlawful diversion or misuse of a schedule II, III, or IV substance, and such information will further the purpose of the investigation or assist in the proceeding;

…as well as:

any agent of the Department of Health and Human Services, a State medicaid program, a State health department, or the Drug Enforcement Administration who certifies that the requested information is necessary for research to be conducted by such department, program, or administration, respectively, and the intended purpose of the research is related to a function committed to such department, program, or administration by law that is not investigative in nature;

…and a few other people as well.

So, no federal database, just fifty-one state databases that the feds and state and local governments can go browsing through every time they decide you’ve done something bad.

(And thanks to Dvd Avins for bringing this to my attention.)

Comments on I don't feel two years healthier:
#1 ::: Ron Sullivan ::: (view all by) ::: April 20, 2007, 12:55 AM:

OK, I've incontrovertibly, clinically got The Creeps.

I wonder if that's a reportable offense yet.

#2 ::: Lizzy L ::: (view all by) ::: April 20, 2007, 01:08 AM:

Avram, I agree with Ron, this is totally creepy. I don't want the government monitoring my drug use to protect me from addiction, thank you, I'm perfectly capable of handling that task myself. This is another front in the War on Drugs, and it sucks. Another example of Republicans not liking intrusive governmental regulations except when they do it. Which behavior, exactly, are they preparing to criminalize? That of patients, or doctors? Or both?

#3 ::: Seth Morris ::: (view all by) ::: April 20, 2007, 01:11 AM:

... well, maybe I shouldn't be taking my meds then.

And I don't understand in what way checking on Cho's possible use of antidepressants could qualify as "related to an individual investigation or proceeding involving the unlawful diversion or misuse of a schedule II, III, or IV substance" or by one of the other organizations in any function that is not investigative by nature.

Or can they only say "we looked at all his prescriptions in case some Dr had Rx'd PCP"?


Some more details for the curious who don't want to read the whole thing:

On the plus side (such as it is), the act allows (but does not require) states to exclude data on drugs administered directly by the prescriber and drugs administered in a dose for intended 48 hours or less.

The information required is the expected prescriber, prescription, and refill information as well as the name, address, and phone number of the "ultimate user" of the drug.

And doctors can search the database at will as well. Well, "a practitioner (or agent thereof)" can. And any other state can get the data if they have "interoperability." States are required to have interoperability with geographically adjacent states. Apply the transitive property as needed to see where this goes.

The act also authorizes (but does not require) the state to "to the extent permitted under State law, notify the appropriate authorities responsible for carrying out drug diversion investigations if the State determines that information in the database maintained by the State under subsection (e) indicates an unlawful diversion or abuse of a controlled substance." In other words, they can troll the db for things they want to report to the DEA.

Interestingly, veterinarians are included. I wonder how my cat's atenolol gets reported.

And this was a $15 million dollar expense last year and this year. It will be a $10 million dollar expense the next three years (unless amended).

#4 ::: Suzanne Moses ::: (view all by) ::: April 20, 2007, 01:13 AM:

I'm trying to reconcile this with the outrage I've seen from other people--specifically that Cho was able to buy a gun despite have a history of poor mental health.

Assuming that weapon sales remain legal in Virginia (*sigh*) having a way to check someone's mental health state seems logical, and a perscription drug look-up would provide one way to do that.

However, the very existence of such a list seems to create opportunities for things like this post talks about.

I'm trying to figure out how to balance these concerns, but I don't think I'm doing a very good job of it.

#5 ::: Ty ::: (view all by) ::: April 20, 2007, 01:21 AM:

I've gotten to the point that, when the government doen't seem villainish in a Orwellian way, I am surprised.

#6 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: April 20, 2007, 01:24 AM:

Am I reading this wrong, or do the access (lack of) restrictions essentially allow any Federal agency to copy arbitrarily large pieces of any state database whenever they feel like it? Is there any provision for oversight or review of use? Or should we just resign ourselves to the Drug Czar knowing anything he wants to?

No, creepy doesn't amount to half of this one.

#7 ::: Julia Jones ::: (view all by) ::: April 20, 2007, 01:30 AM:

This, coming on top of yesterday's Supreme Court decision?

Welcome to Gilead.

#8 ::: Elusis ::: (view all by) ::: April 20, 2007, 01:35 AM:

Um...

GROSS.

Excuse me while I go have a long hot shower now, and then figure out how I'm going to tell all my clients this without causing total mental health meltdowns.

#9 ::: Lizzy L ::: (view all by) ::: April 20, 2007, 01:41 AM:

Oh wow.

"No, no, Charlie -- the folks in the black helicopters are not hovering outside the building watching you take those meds. Trust me on this."

Gimme that hat. No, not that one, the shiny one. Yes, the tin foil one. What? Oh, no special reason.

#10 ::: Tania ::: (view all by) ::: April 20, 2007, 01:41 AM:

As a supplement (some duplication) here's the BoingBoing article on this from earlier this week.

#11 ::: crazysoph ::: (view all by) ::: April 20, 2007, 01:51 AM:

(Somewhat off-topic, for which I apologize)

Suzanne Moses @ 4, I've seen a post over at Obsidian Wings, titled Shooters, where the author describes his attempts to deal with a long-distance friend, who appeared to be spiraling toward creating his own violent event with a gun. The story poses more questions than answers, but since I'd been wondering similar things without being to articulate them, I found the post worth reading.

Crazy(and also - back to the topic - Creeped Out, Officially)Soph

#12 ::: Ron Sullivan ::: (view all by) ::: April 20, 2007, 01:55 AM:

Julia, # 7: Yes. Sometimes I'm grateful I'm postmenopausal, but I do have younger female family and friends about whom I still fret. Is there a bomb in Gilead? One can only hope.

Seth, # 3: Concern about PCP might explain the veterinarians' being included, but half the mortarforkin' country is taking antidepressants. Does this cute little regulation have the purpose of making that many of us paranoid, or suspected criminals?

Oh wait. Yeah, maybe.

#13 ::: Luthe ::: (view all by) ::: April 20, 2007, 02:39 AM:

While the implications of law enforcement having access to the database(s) are creepy enough, the bit about the various health services that have access to the information for "research" purposes is equally creepy.

I feel like a lab rat. *gets out rat sized tinfoil hat*

Oh, and Suzanne at #4? Not letting crazy people have guns is a nice idea in theory. However, I would like to point out there are plenty of crazy people who already have guns, plenty of gun shows where it's easy for the crazy to get guns, and a lot of crazy people who don't want guns, but also don't want other people having access to confidential medical information like the current state of their sanity. So, while I would prefer the kooks not to be armed, I like my privacy better.

#14 ::: Dave Bell ::: (view all by) ::: April 20, 2007, 03:05 AM:

I'm not sure why anti-depressant use should be any useful indicator that you're likely to go out and shoot other people.

And if every Doctor in the country can look up a new patient and check on what they're already being prescribed, it has some potential to be useful.

But I don't expect this to diminish by one iota the hassles that TNH gets from the War on Some Drugs intersecting with her narcolepsy, and this gives a huge number of non-medical people access to medical records.

And the Supreme Court decision is a bunch of medical amateurs taking a general medical decision about which method should be used.

And with no come-back from the People; they're there for life. What's that quote? One of the Chamberlain family? "Power without responsibility: the prerogative of the whore throughout the ages."

#15 ::: Kathryn from Sunnyvale ::: (view all by) ::: April 20, 2007, 03:22 AM:

About 3-4 years ago I'd just finished a project which included me learning a bunch about medical privacy rules.

Right then I found out about changes to how California was collecting prescription data at California's equivalent of the DEA: that is, this database. I was curious about their privacy policy- I have every right to be and to ask about it- and called them up.

"Hi, I'd like to talk to the person in charge of you privacy policy."
"How'd you get this number?"
"It's on your website- it's you office's main number."
"This isn't a number for the public."
"OK, just connect me through to the person in charge of the privacy policy."
"Priva...what? We don't... give... let me take your number, we'll have to call you back."

They never called back. When I called again 2 weeks later, the number went to a recording saying that it was for official use only.

At the time, I recall reading claims that they weren't getting medical records, therefore the privacy implications weren't the same.

Never mind that some prescription medicines tell you just about exactly what medical condition the patient has. So, for instance, if you have narcolepsy, or if you have AD(H)D, then the government and every law agency knows you have it too*. Same for men needing an androgen boost (boy, that information can't be misused). Yay patient confidentiality. Swearwordy swearwording swearworders.

And the data never expires, either. 10 or 30 years from now, the gov't will still know that I took sleeping meds (schedule IV) and a benzo (sch. III) back in 2004. Belgiumers.

I'm happy I took them then, and will recommend them for anyone in similarly stressful situations**. If I was applying for a sensitive job I'd be nonplussed about telling an interviewer that I'm the sort of person who now knows to stop insomnia on the first night. But that they'd know about it before I said a word?

"And why did you start taking an anti-anxiety medicine back in 2008?"
"Because I discovered that my government was acting more and more like Big Brother."
"Big Brother?"
"Yeah. For example, they were tracking every medicine I took."

------------
* Schedule II- cocaine, raw opium, ritalin, PCP. Because we must protect against those dangerous, dangerous Focused.

** While current stress meds are achingly primitive compared what will exist in a few years***, cortisol floods are far, far worse. I know firsthand that Fight Or Flight is less than a worthless reaction if you're filling out DNR forms in an ICU. And even less useful for the next DNR for the next ICU (I had power of attorney).

*** It's all about the receptor sites. They're finally able to build meds that target only the useful sites and skip the potential-for-addiction receptors.

#16 ::: Dave Bell ::: (view all by) ::: April 20, 2007, 03:45 AM:

Kathryn...

It's all about the receptor sites. They're finally able to build meds that target only the useful sites and skip the potential-for-addiction receptors.

Oh my God! Non-addictive drugs! We won't have an excuse to poke our noses in!

#17 ::: Kathryn from Sunnyvale ::: (view all by) ::: April 20, 2007, 04:08 AM:

Suzanne @4,

Shouldn't you be much, much more worried about people who never see a doctor about their psychological health?

As I just wrote above, I took a benzodiazepine med back in 2004, during a time where I had relatives (plural) in hospitals and ICUs. It was a bit much, I knew that elevated cortisol isn't healthy, and I dealt with it*.

That was a tough time. With the help of modern medicine, that year only took 12 months off my life, not the multiple years that prolonged stress can take.

For me (and for people like me, I'll argue), stress isn't as bad, because stress-in-itself isn't a stressor. I can recognize it, define it, and draw boundaries around it. If my stress were to ever get that bad again, I know that help is a couple of copays away. For me, big stress can only be acute, not chronic. I'd make parallel arguments for treated depression, or treated anything.

Compare that to the people who can believe that the stress can get infinitely worse, because they haven't experienced a limit.

Worrying about people in the pharm database is like looking for your keys under the streetlamp: easy, fruitless.

Perhaps even worse that useless. If a person knows that seeking help is permanently marked against them, then they might avoid getting help. Or if an involuntary commitment means a person is forever banned from owning a gun, then family and friends might be more wary of trying that route: that's a long-term punishment for people in hunting country.

-------
* Would also point out that cortisol is orthogonal- unrelated and unneccesary- to the proper functioning of grief.

#18 ::: Lee ::: (view all by) ::: April 20, 2007, 04:25 AM:

Julia, #7: I wonder who has access to the data concerning the names and addresses of women who have purchased Plan B, and how soon I can expect to be targeted as a "baby-killer"?

(Never mind that I'm well into cronehood, and the dose I bought is sitting in the medicine cabinet against the chance that someone I care about might need it.)

#19 ::: Adrian ::: (view all by) ::: April 20, 2007, 04:27 AM:

I don't take antidepressants now, because I've had some distressing neurological side effects when I tried to take them in the past. My primary care doctor recently said that it would be a good idea to consult another specialist on this, so I made an appointment on her recommendation. The specialist's office manager said, "There are an awful lot of forms we want new patients to fill out, so you should allow..." I interrupted and asked her to mail me the forms. There's no way I could have filled them out in a waiting room. List all the psychiatric meds I've ever taken, at what dose, and all the effects I've experienced, both positive and negative. This is much, much, simpler for people who haven't spent 20 years being prescribed meds more-or-less off label, usually taking them just long enough to discover the side effects are intolerable or not worth it.

I spent a chunk of this morning with my primary care doctor, going through my official records. What was I taking in 2000, when I sat at the foot of the stairs and cried because I couldn't figure out how to make my body go up them, it was too much like trying to play tetris while looking through a mirror? There was one med I took, I remember feeling like my skin was on inside out, a profound tangible wrongness I couldn't describe strongly enough. (Demonstrably. The doctor wrote it down as "itching.") My own doctor has trouble figuring out what psychiatric meds I've taken in the last 8 years.

That's just a consequence of sloppy recordkeeping, not even arguing about what meds are "psychiatric" when one tries to use them for neurology and gets psychiatric side effects. The risk of sloppy recordkeeping goes up as we deal with more complicated medical situations. I'd love to give my primary care doctor an easy-to-use computerized recordkeeping system. What med did I prescribe for that? And did it help or hurt? Should be easy answers to find. (But I am only supposed to be in charge of my own health care, not auditing my doctor's recordkeeping.) I want to facilitate this kind of information-sharing with the specialist, which is happening with my consent. The specialist wants to know everything I've tried so he doesn't have to start from the beginning. But I'm afraid any tidy, accessible, easy-to-use, easy-to-share system would be wide open to Government Agents and MiniHell. All for our own good, of course.

#20 ::: Alan Braggins ::: (view all by) ::: April 20, 2007, 05:26 AM:

#4: If you think there should be a check on someone's state of mental health before selling them a gun, then surely the answer is to make them produce a doctor's certificate saying "I know this patient and don't know any reason why he shouldn't have a gun", not look up their prescription history.

How many doctors would ever risk the danger of a lawsuit for having signed such a declaration for a patient who later misuses a gun is another matter, but maybe you allow people to sue for having their constitutional right to bear arms violated unless a good reason is given for refusing. I'm not saying this is a good answer, just less bad than looking through a prescription database.

(If you are an extreme believer in the Second Amendment providing serious protection against a tyranical government, you don't require a check because declaring its opponents to be insane (and therefore also ineligible to vote) is a handy means of supressing dissent, and the risk of allowing crazy people guns is less than the risk of not-really-crazy people not having guns. But I think everyone agrees there's a line somewhere, and some people really ought to be locked up and not allowed guns, for their own and other peoples' safety.)

#21 ::: Jenny J ::: (view all by) ::: April 20, 2007, 05:29 AM:

Readers might be interested in current debate here in the UK about the introduction of something called (unnervingly) 'The Spine', a nationwide patient records database. The Spine is intended to be accessed by relevant medics only.
Its official website is here: http://www.connectingforhealth.nhs.uk/systemsandservices/spine

whilst related stories can be found here: http://news.bbc.co.uk/1/hi/health/6167924.stm

and here: http://society.guardian.co.uk/e-public/story/0,,2034557,00.html

As a crazy person, I will be opting out. Years of doctors not bothering to read, completely misunderstanding, and entering misleading - and sometimes bizarre - things into, my paper notes give me reason to believe centralised data is unlikely to be all that useful, and I cling stubbornly to that romantic idea of privacy.

And for the record, I am not the kind of crazy person to kill my classmates. The press (over here, at least) seems to be insinuating just a little that we all are, and this makes me a bit uncomfortable (and yes, I'm well medicated, thank you).

Of course, the idea of buying a gun is pretty alien to me and my friends.

#22 ::: Alan Braggins ::: (view all by) ::: April 20, 2007, 06:15 AM:

#21: Ross Anderson has done a lot of work on UK medical information systems (and other information security related topics.

A recent paper is Under threat: patient confidentiality and NHS computing.

In the other hand, if you want to look at the current self-reported health of a bunch of anonymous self-selected people - http://whoissick.org (via Boing Boing)

#23 ::: Serge ::: (view all by) ::: April 20, 2007, 06:24 AM:

So much for patient/doctor confidentiality... And one more avalanche of information to add to the heap that Big Brother alredy can't cope with...

#24 ::: Emily H. ::: (view all by) ::: April 20, 2007, 06:56 AM:

A couple of years ago, I needed three pain-medication prescriptions within 10 months for wisdom teeth extraction, a broken elbow, and a broken ankle.

It is Really. Freaking. Scary to think that the government could be on my case just 'cause I can't successfully walk in a straight line.

#25 ::: Serge ::: (view all by) ::: April 20, 2007, 06:58 AM:

Julia Jones @ 7... About this and about the Supreme Court's decision... Like I was saying to someone yesterday, this is all starting to feel like the frog who let itself be boiled alive because the water's temperature was increased very slowly.

#26 ::: John ::: (view all by) ::: April 20, 2007, 07:10 AM:

My wife has a number of prescriptions that she takes regularly; no doubt some of them would show up on this government "let's watch those people who take these medicines" list. Geez, just what we all need; Big Brother looking over our pharmacist's and doctor's shoulders.

BTW, many pharmacies are already telling you in commercials that they've got this database set up. I don't remember which one it is but one of the national chains is proud of their ability to "look up your prescription online" if you are out of state, so they can fill it for you without needing the written prescription itself.

#27 ::: Nancy Lebovitz ::: (view all by) ::: April 20, 2007, 07:19 AM:

Aside from the drawbacks of this database, I note that they snuck it in. There's no way (with my rather nervous bunch of news sources) that I could have failed to hear about it. I bet Avram would have heard about it too, and it looks like it was news for all the other commenters.

Assuming the news story I heard about medical identity theft is true, there's also a chance of someone else's information being mixed with yours.

#28 ::: Name Omitted ::: (view all by) ::: April 20, 2007, 07:54 AM:

I work in health care compliance for a major medical center. Privacy (including HIPAA, federal medical records privacy) is one of my areas of expertise, and a primary area of responsibility.

My state is participating in this, and I had no clue. Neither did anyone else involved in our work; I've asked. And we have an obligation to tell patients who ask when their information has been disclosed to the government. They really did sneak this in.

(Name, both mine and where I work, omitted for obvious reasons. But I'm reading this discussion, and am happy to respond to questions about medical privacy.)

#29 ::: Dave Kuzminski ::: (view all by) ::: April 20, 2007, 07:56 AM:

Medical information on cancer patients is also collected in every state and forwarded to a national database. The size of each individual electronic record is huge.

Only two states even have laws requiring you be notified that the information was reported. Virginia is one of the two.

#30 ::: Kathryn from Sunnyvale ::: (view all by) ::: April 20, 2007, 08:10 AM:

Seems like a good place to point out the giant blind-spot we all have regarding the pain of depression and suicide.

There are many illnesses that can cause pain so strong that a patient talks about suicide as a response*.

Generally, with illnesses, if you say "this pain is intolerable, I want to die," you don't get involuntary commitments, you don't get on permanent 'do not let buy a gun' lists, and you don't get kicked out of university.

No, you get painkillers. Schedules II-IV are filled with them: alfentanil to vinbarbital, codeine, hydrocodone. Mix and match methods: morphine drips, fentanyl patches, nerve blocks, electrical stimulation including deep brain (intracerebral) stimulation.

You get painkillers even if- especially if- your illness is untreatable. Palliative care. Cordotomies. Heroin-morphine mixes.

Unless the illness is depression. There the response is "Here's an antidepressant, it should kick in within 6 to 8 weeks."

We could just as easily say the same to burn patients "Your pain is caused by nerves regrowing. Wait 6-8 weeks and the burn will go away." But that would be considered a medical treatment horror.

We see the pain of burn recovery as separate from the burn. That the pain might go away upon healing is irrelevant: the pain isn't the burn. But not with depression- we don't see the pain at all. Big, big blind spot.

Because what we don't see we don't research drugs to treat. Even though it kills a million a year in the world. Or if we do think about it, we think it'd take some far-future soma. It couldn't be possibly be like chemicals that already exist**. Maybe there aren't many drugs that work that quickly. Maybe there are many. Who knows? We haven't been looking. Big blind spot.

20,000 people since August. But I haven't read that the standard or expectation for treatment has changed from 6 weeks to 6 hours. 20,000.

------
* Examples: I heard it from an elderly relative with a severe case of shingles, and I believed him. Also heard it about a friend's relative who'd had 3rd degree burns.

**Yes, that's one small experiment. Of an anasthetic that's been around for 40 years, and a drug that's commonly used recreationally. In the US suicide isn't far behind auto accidents as a cause of death: 30,000/year.

#31 ::: Kimiko ::: (view all by) ::: April 20, 2007, 08:19 AM:

Seth in #3:
Interestingly, veterinarians are included. I wonder how my cat's atenolol gets reported.

Vets commonly use ketamine as a dissociative anesthetic. Also known as special-k, at one time popular with the raver crowd. (Is it still? Are there still ravers?)

#32 ::: Fragano Ledgister ::: (view all by) ::: April 20, 2007, 08:30 AM:

Kathryn from Sunnyvale #30: Many people see mental illnesses (and depression in particular) as not quite real. They think that depression can be overcome by encouragement (whether positive or negative), and do not understand (perhaps, do not believe) that there is a physiological basis to the condition.

#33 ::: Robin ::: (view all by) ::: April 20, 2007, 08:40 AM:

HMO Administrator: I'm sorry, but according to the government database, you were prescribed medication for an anxiety attack back in 1984. That's a pre-existing condition, so I'm afraid we can't offer you any coverage.

Uninsured patient: Oh, yay! More self-medication and lack of proper treatment! Thank you Big Brother, may I have another?

#34 ::: albatross ::: (view all by) ::: April 20, 2007, 08:44 AM:

Yes, they'll be very careful to respect your privacy with this database. For example, after your newsworthy death, the highly responsible, trusted people with access to this database will never, say, tell the fking news media about what they found in the database.

Similarly, I have great confidence that no employer, private detective, or insurance company will ever get access to this information. Cindy Sheehan's prescriptions, and Seymour Hersh's, are certainly not printed out on a piece of paper on Karl Rove's desk. I'm sure this will get the same careful protection that our credit records get. And that it will be maintained with the obsessive concern for correctness so visible in the TSA's no-fly list.

Sometimes I hear 60 year olds complain that the US is hardly the same country they grew up in. I am not used to feeling that way myself, but I'm beginning to.

I wish I had more faith in some reverse to this trend. Anyone want to bet that this database will go away once the Democrats have both the white house and congress? Once, the complaint among libertarians was that the Democrats were moving us quickly to socialism, while the Republicans were moving us there slowly. I feel like this situation is reversed, now--the Republicans want the police state tomorrow, while the Democrats want to delay it till next week. But we don't ever seem to see movement back toward less all-powerful, less intrusive government. We just occasionally slow down our rush toward the nightmare state.

#35 ::: Kathryn from Sunnyvale ::: (view all by) ::: April 20, 2007, 09:00 AM:

Kimiko @31,

From my experiences at a place known to contain several raves at any given time (I'm not a raver, I go for the art), it is still. Yes there are.

Based on samples of
1. the too-happy irislessly-wide-eyed folks who wander into camp inquiring about our ability to donate vitamins and
2. the too-cute wire-wearing non-red-eyed undercover agents inquiring about our ability to sell vitamins

vitamin K is behind only vitamin E in popularity with the ravers.

As for the general population there, the use of herbal supplements and medicinal aperitifs and digestifs seems to mirror their use in the default world.

#36 ::: Aconite ::: (view all by) ::: April 20, 2007, 09:02 AM:

Kathryn from Sunnyvale @ 30, Fragano Ledgister @ 32:

The attitude most Americans have towards mental illness is that it's a moral failing and simultaneously that it's a genetic defect.

Plenty of people who, during normal conversations, will say they understand that mental illness is just another kind of illness, acute like bronchitis, or chronic like diabetes, will nevertheless show their true feelings on the subject when they're looking for something to hurt you with. Then, nearly without fail, your depression/anxiety/whatever will come up, as evidence you're f*cked up.*

I'm convinced that an awful lot of both recreational and addictive alcohol use is an attempt to self-medicate pain by people who believe going to a doctor for it is proof they're defective, or who realize that it will be used as a weapon against them.

*Instead of being seen as a sign that you were intelligent and self-aware enough to, y'know, get proper treatment from an expert, instead of going untreated and causing problems for yourself and others.

#37 ::: Kathryn from Sunnyvale ::: (view all by) ::: April 20, 2007, 09:26 AM:

Fragano @32,

Understood. I know about the people who think of depression as lack of willpower or not enough resilience or not following The Secret, and I'm not sure what to do about that. No, I have ideas what to do... give them depression, see what they think*.

I'm concerned about the people who know depression- they treat it, or they have it- yet don't think about treating depression's pain.

A depressed person who asks "Doctor, thanks for the antidepressant prescription, but what about the pain right now?" isn't going to get an answer involving the pain, now. The doctor won't think of the question as being answerable or even as being a reasonable question, even though for most other illnesses it's a well-answered question.

Yes, it's a psychic pain, a psychological pain, a "can't yet point to it" pain. But if it's real enough to kill 30,000 it ought to be real enough to treat.

--------
* Instant depression can be a side-effect from certain beta blockers, for instance. Happened to a good friend of mine being treated for (high blood pressure?). Started the blocker, and a few hours later she got hit with a depression like every piece of bad news you'd get in a lifetime came at her in one day. Stopped the blocker, and a few hours later life was kittens on ponies again.

#38 ::: Martyn Taylor ::: (view all by) ::: April 20, 2007, 09:27 AM:

A national medical database. On a computer, a very big computer. Or on lots of small computers all linked up. Data entered by bored, low paid people dreaming of being Justin Timberlake or Jlo or thinking that it must be 5 oclock somewhere.

And you think its going to work?

#39 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: April 20, 2007, 09:27 AM:

Dave Bell @ 16

Oh my God! Non-addictive drugs! We won't have an excuse to poke our noses in!

Don't be silly. There will always be reasons for government officials on the best-paved roads to interfere with our lives, for our own good. Or somebody's.

In fact, I'm wondering if the Drug Czar (who we'll now have to call the Druggist Czar, I suppose) isn't getting warm all over right now with the realization that this database allows him to control the trend of drug prescriptions on a massive basis. The database will be able to show what drugs a given doctor is prescribing to what percentage of patients.

"Excuse me, Doctor, we've noticed that you are prescribing anti-depressants to 34.5% of your patients. You do realize that the Federally recommended maximum is 33.3%, and that this excess puts you on the Federal Anti-Hedonic Watch List?"

"But I was only trying to help my patients cope with the stress of modern American life!"

"Yes, and that is a Federal crime. When people need help, Doctor, we'll be the ones who will help them. We'd rather they weren't grateful to anyone else. And if they're not grateful, well, that's a crime too."

#40 ::: Serge ::: (view all by) ::: April 20, 2007, 09:31 AM:

I'm just waiting for the day when one of the people behind the no-fly list decides he can spot potentially dangerous flyers by linking to that database and looking at their med list.

#41 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: April 20, 2007, 09:36 AM:

Alan Braggins @ 20

But I think everyone agrees there's a line somewhere, and some people really ought to be locked up and not allowed guns, for their own and other peoples' safety.)

I would contend that a large part of the current federal administration falls into this category. Frankly, I'm more concerned that we should be preventing crazy people from taking political office. A lot more people get hurt that way.

NOT :-)

#42 ::: Susan ::: (view all by) ::: April 20, 2007, 09:40 AM:

#31 & #35:
Interestingly, ketamine seems to have significant effects on depression - google "ketamine depression" for more articles like this one. I wonder if anyone's done studies about the intersection of k use and (lesser rates of?) suicide.

I was fascinated to read about this recently - it suggests to me that all the medical studies I did where I took k regularly in hospital settings probably had something to do with lifting my previous depression. I could tell at the time that while under the k the depression went away, but I didn't realize it could have a lasting effect.

(My government drug files are probably huge and rather exotic - I did those studies at a VA hospital, and they had two four-inch-thick charts on my exciting adventures in medically-supervised drug use, complete with my artistic depiction of what I felt was happening to my head whenever I moved it while under the combined influence of k and meth.)

#43 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: April 20, 2007, 09:58 AM:

Kathryn from Sunnyvale @ 30

You get painkillers even if- especially if- your illness is untreatable. Palliative care. Cordotomies. Heroin-morphine mixes.

And yet there is significant evidence that pain medication is under-prescribed even for physical pain, especially post-op.

Anecdotally, I know this to be true. In 2000, one of my vertbral disks ruptured. In mid-2001*, the disk was partially removed in a surgical procedure that left me in the hospital recovery ward for five days while I re-learned how walk distances of less than 20 feet.** During that time, I was on a self-dosing painkiller for two days, after which they switched me to morphine pills, of which there were never enough to allow me to think about much but the pain.***

* The time from diagnosis (sort-of) to treatment is another fascinating story in medical feasance (you choose the prefix). Suffice to say I now know far more about tomographic image technologies than I knew before, from the inside as it were.

** It was three months, and quite a few pills, before I could walk more than 100-200 meters without being bathed in sweat. By that point I was (theoretically) weaned from the morphine and chugging ibuprofen in carload lots. This was fine by me, as I hate morphine with a passion, and am really uneasy about getting addicted. My stomach wasn't so happy about the ibuprofen. While it is true that we have a wide range of medications for many conditions, it is also true that very few patients show no side effects from any of them, and most patients have widely different reactions to different sets of drugs. Finding the right medication for even common conditions is often a long, uncomfortable, trial-and-error process. And one that's quite likely to be easily misinterpreted by users of the Federal database.

*** Thank the god of soap-operas for the patient in the next bed, his endless circle of tacky relatives, and the occasional Bremerton police officer looking to tag him for possession with intent to sell of large quantities of cocaine and crystal meth. Quite a floor show.

#44 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: April 20, 2007, 10:08 AM:

Kathryn from Sunnyvale @ 30

Unless the illness is depression. There the response is "Here's an antidepressant, it should kick in within 6 to 8 weeks."

Actually, the response is more commonly, "We have no idea (or too many ideas) about what your problem is. Please go see this list of specialists, who will all prescribe different things for different problems, none of which you have."

As I understand it, the average time required to reach a diagnosis of clinical depression is over 2 years from the time the patient first comes to ser primary care physician, and a (probably unknowably) large percentage are never diagnosed.

Patients are often prescribed antidepressants for other conditions (ADD, sleep disorders, complications of other medications) only to discover that they had in fact been depressed for years. You know depression has taken control of your life when it's too much effort to think about suicide, but of course by that point, it's too much effort to know anything about your own life (trust me, this is not a joke, and there is nothing whatever amusing about it).

#45 ::: FungiFromYuggoth ::: (view all by) ::: April 20, 2007, 10:10 AM:

What doesn't add up is that (according to a BoingBoing commenter) most antidepressants are Schedule VI, not I-IV. So they presumably wouldn't have been in this database, unless they're tracking every prescription.

There were some objections by Democrats, so hopefully this can be revisited. It does certainly sound like a fair number of people have access to this database and no compunction about anonymously reporting search information.

#46 ::: Seainni ::: (view all by) ::: April 20, 2007, 10:23 AM:

Okay, this makes me want to buy all my drugs in Canada or Mexico!

#47 ::: Jon Meltzer ::: (view all by) ::: April 20, 2007, 10:31 AM:

HMO Administrator: I'm sorry, but according to the government database, you were prescribed medication for an anxiety attack back in 1984. That's a pre-existing condition, so I'm afraid we can't offer you any coverage.

Hiring manager: I'm sorry, but the government database shows that you are under antidepressant medication to relieve the stress involved in looking for a new job while unemployed. Our group insurer will consider that a pre-existing condition and thus raise our rates, so I'm afraid we can't afford to hire you. Best of luck in your search.

#48 ::: Kathryn from Sunnyvale ::: (view all by) ::: April 20, 2007, 10:33 AM:

Susan @42,

What bugs me (as mentioned in #30) is that 8 months after that study was published, nothing has changed.

Not that I was expecting much, but by now there ought to be a few anecdotes about psychiatrists prescribing SSRIs and then saying "I'm sure you've read about the ketamine study in the Archives of General Psychiatry 63 pg 856, where a majority of participants had some relief within a few hours. I cannot recommend this drug."

Similar to how years ago a student I knew was starting chemo. His parents were told by the oncologist "I'm sure you've heard about the anti-nausea and appetite promoting effects of marijuana. I cannot recommend his taking it. Here are the names of parents running a cancer support group. Talk to them."

Nothing has changed, except for the 20,000 dead, and the many more who are caught in big bad depressions, and the ones about to lose their jobs, or the ones who can't get a job...

#49 ::: Alan Braggins ::: (view all by) ::: April 20, 2007, 10:38 AM:

#41 Smiley noted, but one advantage of a democracy over absolute monarchy is that it's harder for a crazy person to be in charge.
At least their madness has to be the sort that's only evident with hindsight. It's easy to say now that Hitler was a meglomaniac who should never have been be allowed power, but at the time people clearly didn't think he was insane. Bush might (indirectly) have killed far more people than any madman, but however badly the elections were run, he had widespread support from many voters who considered him not only sane but the best man for the job. (I don't understand why, but saying that they all must have been mad dilutes the idea of madness to useless.)

And giving a small group the right to decide who is sane enough to hold office has obvious problems - "Anyone sane would support the Party's policies, so only Party members may stand for office".

#50 ::: P J Evans ::: (view all by) ::: April 20, 2007, 10:52 AM:

It does certainly sound like a fair number of people have access to this database

Which reminds me of yesterday's Gonzales hearing where Sen. Whitehouse (D-RI) was comparing the Clinton and Bush43 access to USAs. Clinton: 4 from the WH and 3 from DOJ. Bush43: 417 from the WH and 30 from the DOJ. Nope, no political purposes here, not at all.

i remember my mother being depressed. Clinically depressed. She did go to the doctor - took a while to get her to do that - and after a few tries they found an antidepressant that worked for her. She said later that she didn't know how I'd put up with her during her depression.

#51 ::: Fragano Ledgister ::: (view all by) ::: April 20, 2007, 10:52 AM:

Aconite #36 wrote: "I'm convinced that an awful lot of both recreational and addictive alcohol use is an attempt to self-medicate pain by people who believe going to a doctor for it is proof they're defective, or who realize that it will be used as a weapon against them."

I think you're right. I'd add that drug/alcohol ab/use of this kind is also the resort of those who (a) can't afford medical treatment, or (b) believe that the problem is a moral one but who cannot draw sufficient solace from religion.

#52 ::: Fragano Ledgister ::: (view all by) ::: April 20, 2007, 10:53 AM:

Kathryn from Sunnyvale #37: Yes, indeed!

#53 ::: dornohneroeschen ::: (view all by) ::: April 20, 2007, 11:00 AM:

*i* wanna know which drugs have been prescribed for our president. and the first lady. geez; you can tell just by looking at the photos that *she's* on the edge.

#54 ::: Clark E. Myers ::: (view all by) ::: April 20, 2007, 11:11 AM:

Folks who check their own credit rating might want to include this one:

From Wikipedia, the free encyclopedia

MIB Group, Inc., also known as the Medical Information Bureau, is a nonprofit credit rating agency serving the North American insurance industry.

MIB collects and furnishes information on consumers to all MIB members, approximately 500 member insurance companies, for use in the insurance underwriting process. In addition to an individual's credit history, data collected by MIB may include medical conditions, driving records, criminal activity, and participation in hazardous sports, among other facts. MIB's member companies account for 99 percent of the individual life insurance policies and 80 percent of all health and disability policies issued in the United States and Canada.

According to MIB, most people do not have an MIB record, and only 15 to 20 out of every 100 insurance applications generate an MIB record.

MIB is based in Westwood, Massachusetts, and was established in 1902.

When I knew something about it most pharmacies used patient tracking software furnished by drug makers. Records were uploaded overnight for marketing purposes and arguably HIPPA was met by using patient identifiers such as phone numbers rather than names.

Notice that one consequence of single payer is single database or no security by obscurity.

#55 ::: Chris Quinones ::: (view all by) ::: April 20, 2007, 11:20 AM:

Albatross, #34: Forget about Cindy Sheehan and Seymour Hersh's medication, what about Arlen Specter's and John McCain's?

#56 ::: Serge ::: (view all by) ::: April 20, 2007, 11:26 AM:

Clark @ 54... MIB? MIB?!!! Now Tommy Lee Jones will come knocking on my door.

#57 ::: albatross ::: (view all by) ::: April 20, 2007, 11:27 AM:

#51 Fragano:

This is something I've heard from my mother in law, who practiced psychology for about 30 years before retiring. I think there's a range of varation in many mental traits where some level of self-medication and other self-treatment is workable. And then there are people who just can't manage that--the available self-medicating agents aren't strong enough, or they're too hard for non-experts to dose, or whatever.

But I'm now spouting off far outside my competence. Anyone with some actual knowledge want to chime in? (Whatever happened to Rivka?)

#58 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 20, 2007, 12:31 PM:

Aconite @ 36

I'm convinced that an awful lot of both recreational and addictive alcohol use is an attempt to self-medicate pain by people who believe going to a doctor for it is proof they're defective, or who realize that it will be used as a weapon against them.

There's a good deal of clinical evidence for this; self-medication is quite common for both depression and schizophrenia (alcohol and marijuana are considerably less disorienting and disabling than the general run of antipsychotic drugs). My source for this statement is my son, who is a research clinical psychologist in the field of schizophrenia treatment.

And there are some fairly high-profile examples: Charles Mingus, for instance, was probably using alchohol to self-medicate schizophrenia, for instance, based on what his wife and associates said.

#59 ::: Jon Meltzer ::: (view all by) ::: April 20, 2007, 12:34 PM:

#55: Well, I wouldn't mind knowing about McCain's medical history, because (after personal experience with a family member) I suspect he's in initial stage Alzheimer's. He has the symptoms.

But that could be a full thread, I think.

#60 ::: Fragano Ledgister ::: (view all by) ::: April 20, 2007, 12:36 PM:

Albatross #57: The other side of the problem is that people who self-medicate end up overdosing -- becoming addicted, alcoholic, or driving themselves into an early grave.

#61 ::: Fragano Ledgister ::: (view all by) ::: April 20, 2007, 12:36 PM:

Albatross #57: The other side of the problem is that people who self-medicate end up overdosing -- becoming addicted, alcoholic, or driving themselves into an early grave.

#62 ::: Dave Bell ::: (view all by) ::: April 20, 2007, 01:02 PM:

A lot of the problems mentioned don't seem to be limited to the US model of healthcare funding. I've seen similar stuff in the UK.

Which suggests that some of the problems may be down to Doctors themselves, rather than the details of how the money gets to them.

#63 ::: Lexica ::: (view all by) ::: April 20, 2007, 01:32 PM:

Fragano @ 51:
I'd add that drug/alcohol ab/use of this kind is also the resort of those who (a) can't afford medical treatment, or (b) believe that the problem is a moral one but who cannot draw sufficient solace from religion.

I'd add another category: those who don't think about getting treatment because they don't realize it's possible to not hurt, but they know that alcohol or cannabis makes it hurt a little less.

It's like the saying about a fish not knowing about water. A person with depression doesn't know about pain, because all they know is pain.

#64 ::: little light ::: (view all by) ::: April 20, 2007, 01:49 PM:

Okay, that's...that's horrifying.

Maybe I'll actually recover enough to, uh, converse in a bit. I'll be shuddering, meanwhile.

#65 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 20, 2007, 02:03 PM:

Alan Braggins @ 49

The criteria for insanity seem quite obvious to me. Anyone who wants to run for public office is a megalomaniac who needs to be locked up for everyone else's good. The only person I've met so far who is an exception to that is an ex-Mayor of Portland named Bud Clark. He ran for office for pretty much the same reason as Scalzi is running for SFWA office; he spent a term trying to beat sense into the politicians, then quit and went back to running a pub.

#66 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 20, 2007, 02:12 PM:

Lexica 63

It's like the saying about a fish not knowing about water. A person with depression doesn't know about pain, because all they know is pain.

I mentioned before that it takes 2 years to diagnose depression. Nobody knows how long it takes on average after onset before the patient even goes to the doctor (or the percentage that actually do). I suspect most of the time it isn't possible for the patient to pinpoint onset of depression at all, though a spouse or other family member can often figure it out in hindsight.

And that's an accurate description of the depressed mental state in your post. I'd just add, to make it clear, that they know pain, but have no idea that that is what it is.

#67 ::: Tania ::: (view all by) ::: April 20, 2007, 02:13 PM:

Here's recent news on how the government is keeping data secure:

Federal Database Exposes Social Security Numbers

#68 ::: Tania ::: (view all by) ::: April 20, 2007, 02:28 PM:

Bruce @ #66: A friend of mine that is a Psych Nurse Practitioner says a person should be on anti-depressants for at least half as long as they have been depressed.

We had a long discussion on the behavioral change and the difficulty of changing habits of thought and action. Very interesting stuff.

#69 ::: Alan Braggins ::: (view all by) ::: April 20, 2007, 02:37 PM:

Anyone who wants to run for public office is a megalomaniac who needs to be locked up for everyone else's good.

Yes, but there's never an absolutely impartial solipsist with a cat and an absolutely loyal unelected civil service to implement his decisions when you want one, is there?

#70 ::: r@d@r ::: (view all by) ::: April 20, 2007, 03:03 PM:

HEY NSA GUYS. let me save you the effort of looking it up: it's spelled B-U-P-R-O-P-I-O-N

"and then they came for me, and i didn't answer the door because i was still in bed"

#71 ::: Sarah ::: (view all by) ::: April 20, 2007, 03:04 PM:

Bruce @ 65:
Bud Clark! I was living in Portland back then; my dentist's office was just down the road a piece from the Goose Hollow. Now, where do you suppose my "expose yourself to art" poster has gotten to?

/hazy, rose-tinted memory


Lexica @ 63:
In hindsight, it's interesting that even if you have plenty of non-depressed memories to compare it to, you still can't see that the overwhelming pain is unusual and wrong. It messes up your thinking too much to be objective.

Bruce @ 44:
You know depression has taken control of your life when it's too much effort to think about suicide

That's a good description. I hadn't really thought of it in those terms, but I do remember finally working up the energy to check my medicine cabinet, and finding ibuprofen and an antihistamine. I thought it might work if I took them all at once, but the glasses were all the way in the kitchen.

So I sat in the hallway and stared at the wall for a few hours instead.

I've always looked back on that as evidence that I wasn't really suicidal, but I wonder whether the point was actually that I didn't have the energy left to care - sort of like coming out the wrong side of suicidal.

#72 ::: Clifton Royston ::: (view all by) ::: April 20, 2007, 03:22 PM:

Sarah: That's why starting a patient on antidepressants is such a risk. When they start to work, some people discover with relief that they have just enough energy to commit suicide now. I've read it was worse with the old tricyclic antidepressants; for one thing, they were quite toxic in overdoses themselves.

#73 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 20, 2007, 03:29 PM:

Tania @ 68

We had a long discussion on the behavioral change and the difficulty of changing habits of thought and action. Very interesting stuff

Unfortunately something that's often overlooked in the modern paradigm of treating mental illness with drugs is that in almost all cases the patient has developed habits and strategies in an attempt to cope with (or just to accommodate) the mental states the drug alleviates or removes. But now those strategies are usually maladaptive, so some form of therapy and/or behavioral modification is necessary to give the patient back a workable lifestyle.

#74 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 20, 2007, 03:34 PM:

Alan Braggins aa@ 69

there's never an absolutely impartial solipsist with a cat

True. Anyone have a cat I can borrow?

#75 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 20, 2007, 03:45 PM:

Sarah @ 71

but I wonder whether the point was actually that I didn't have the energy left to care

That's one of the causes of the sudden cheerfulness that presages a serious suicide attempt: the depression has lifted enough for you to see a way out.

Clifton @ 72

I've read it was worse with the old tricyclic antidepressants;

I won't swear to this, but I believe I remember that the onset of tricyclic activity is much more rapid than the more recent SSRIs (minutes, not hours). Though there are cases of complete personality change in a matter of days on SSRIs, as the depression lifts and the old personality traits reassert themselves.

While it's even more true with antidepressants than many other medications that the effect varies widely from patient to patient, the change in affect alone on the first few doses is often almost shocking. And it's a damn shame that we don't routinely test for serotonin deficiency, considering just how ruinous clinical depression can be to your life.

#76 ::: j h woodyatt ::: (view all by) ::: April 20, 2007, 04:00 PM:

I wonder how much access to this database costs on the black market? I'd like to cross-check the names in the database with the managers in my employer's company directory. In fact, there's a long list of people I think I'd like to look up in that database.

#77 ::: NelC ::: (view all by) ::: April 20, 2007, 04:13 PM:

dornohneroeschen, #53, that's a good point. Is there any chance at all that Bush's medicines are on this database? And if not, why not?

I sometimes think that this strip-mining of personal data by our governments -- when it can't be opposed by force of arms, say, or sabotaged by the bloody-mindedness of the citizenry, or even made worthless by the intersection of clerical error and the sheer mass of data -- it could be balanced by forcing the governments to be as open as they expect us to be. I'd like to know who has been looking at my data and when. More than that, I'd like to be actively informed at the moment they do it, and for them to be prepared to provide an explanation for exactly why. And I want to know what Tony Blair had for breakfast, what his carbon footprint is, what medications he's on, his travel plans for the next several weeks and anything else that it occurs to me to ask. And not only him but every member of the civil service and anyone else who the government gives the authority to trawl through my data.

I'd like that, but I'm not going to get it. Ah, well, bloody-mindedness it is then.

#78 ::: pat greene ::: (view all by) ::: April 20, 2007, 04:21 PM:

I'm just waiting for the day when one of the people behind the no-fly list decides he can spot potentially dangerous flyers by linking to that database and looking at their med list.

As of 2006, they were already trying do that, Serge, if you are a veteran. My healthcare comes courtesy of the Federal Employees Benefit Program, so I figure that they already are looking at people like me.

I am on a cocktail of psych drugs. If I ever go off and do something violent, the press will have a field day with all the stuff I'm on.

One of the few advantages (small though it be) of being bipolar rather than having plain depression is that most (not all) people understand that being bipolar is truly a matter of brain chemistry and not within your control. They're still scared of you, but they don't view your illness as a moral failing.

#79 ::: Serge ::: (view all by) ::: April 20, 2007, 04:25 PM:

pat greene @ 78... The moment I wrote that earlier post, I expected someone would point out that they are already doing that. My big fear is that amateur shrinks (like the one in Miracle on 34th Street) would be the ones making the decision.

#80 ::: Kathryn from Sunnyvale ::: (view all by) ::: April 20, 2007, 04:38 PM:

Bruce @75,

SSRIs start to have a biochemical effect within hours, but the brain then compensates, preventing any psychological effect. It takes weeks for the brain to give up on the compensation.

The problem is that during those weeks, the patient doesn't know if that medicine will eventually work: in a large percentage of cases, they'll find it doesn't and they'll need to switch. And wait another 6 weeks.

However, a brain scan can tell within days of starting the medicine if that med isn't having an effect. But a patient will have to pay for a scan themselves: the current practice seems quite happy with the patient having to gamble on a 6 vs. 12 vs. 18 week delay.

And that 6 week delay will seem barbaric within a few years, I hope, especially now that the ketamine study shows pain control can happen in hours.

#81 ::: clew ::: (view all by) ::: April 20, 2007, 05:13 PM:

A total database of prescriptions should be helpful for finding unexpected possible side-effects; like, realizing that all six of the octogenarians who took Accutane had remission of their shingles, or whatever. I don't know how you'd scrub the data well enough that the database wouldn't identify people, though, and I'd rather have the privacy.

Bemusement: is this database actually so privacy-blurring that it can't be legally used by researchers who have to meet human-subjects guidelines? (I think privacy is in the guidelines. Yesno?)

#82 ::: Julia Jones ::: (view all by) ::: April 20, 2007, 05:14 PM:

Note also that SSRIs *do* have a noticeable effect within a few days on one group of patients. The ones who are at risk of then flipping into a manic episode. Combine this with the fact that people with Type II bipolar depression often don't know that they have it, because one of the characteristics of Type II is hypomania rather than mania, and you can have some interesting results. People who are given SSRIS and start feeling noticeably better within three or four days need to be aware of this, and that it might not be just a placebo effect.

#83 ::: albatross ::: (view all by) ::: April 20, 2007, 05:46 PM:

NelC #77: Google for David Brin, who's written a book and a lot of essays on exactly this idea.

clew #81: A big problem with scrubbing databases is that even when there's not enough information to identify you in database A or B, there may be enough when you combine them. This is especially true when you're dealing with rare events or cases. You already know that pretty young math professor of yours doesn't look all that healthy, and someone from the local cancer hospital publishes their "blinded" data, describing success of a new targeted chemotherapy for advanced breast cancer in a set of patients, broken out by sex, age, race, age, and education level. Say, how many 35 year old black women with PhDs in math do they have at that hospital?

#84 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 20, 2007, 05:57 PM:

Kathryn from Sunnyvale @ 80

Well, I wasn't going to get into this, but you've made me wonder just what's going on, so ...

About 10 years ago I was diagnosed as having ADD. I've probably had it since I was 12 or so, and I should really have suspected it, since one of my kids was diagnosed with the it and the other almost certainly has it but refuses to be tested. I chose not to go on medication, for a number of reasons which seemed valid at the time.

Cut to about 2 years ago. I had had back surgery 4 years prior, leaving me with a partially functional right leg, had been laid off from the best job I ever had while in the hospital, and was unemployed for 18 months, had developed another problem I had never heard of before (and which is untreatable) in the previous year, and was having serious trouble at work, doing a job that was much less difficult than any I'd had in a long time. Besides which, my marriage of 35 years was heading for the rocks at great speed.

After much argumentation (and lamentation), I went to see the therapist who had diagnosed me with ADD and asked to try medication and to begin therapy and behavior modification so that I could at least deal with the memory problems that had been plaguing me. As a first try, the doctor put me on Strattera, an SSRI which is used for ADD, usually in addition to one of the standard stimulants.

Within 2 days of beginning the Strattera at the initial dosage, my affect changed completely, my wife declared that my personality had turned completely around, and the therapist diagnosed that I had been severely depressed. Which, all things considered, isn't terribly surprising, though it was news to me.

Returning from the depression was, of course, not as quick and as easy as all that, but the change in two or three days was, in the opinion of everybody nearby, nothing short of miraculous. So, given the biochemistry you described in your post, how did that happen? I think there was some compensation effect, because the depression continued to lift over some time, but the best word I can find for the initial effect is "massive".

#85 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 20, 2007, 06:02 PM:

Julia Jones @ 82

It follows that as soon as I'd posted that big tell-all, that I'd see your post. It's not likely that I'm at risk for anything at this point; I've been taking the medication (at a higher dosage than initially) for two years now without problems, but I'm curious what I've been missing ;-) Can you point me at some more description of what you're talking about?

#86 ::: Emma Anne ::: (view all by) ::: April 20, 2007, 06:06 PM:

I'd like to suggest a different view. Some astonishing number of people die every year from drug interactions. I do think doctors need to know what people are taking. And yes, once there is a database, it will eventually be hacked, or used by the governement, or otherwise misused.

How about if we remove the stigma from taking the meds, instead of trying to hide out? I'd bet a quarter of people or more have taken antidepressants. Maybe it is time for us to say so what?

BTW, I take both antidepressants and methylphenidate (generic ritalin) so I do have a stake in this.

#87 ::: Iain Coleman ::: (view all by) ::: April 20, 2007, 06:26 PM:

Anyone who wants to run for public office is a megalomaniac who needs to be locked up for everyone else's good.

I'm running for public office at the moment (City of Edinburgh Council, Pentland Hills Ward) and have held public office in the past (Cambridge City Council, Romsey Ward, Executive Councillor for Environmental Services). I don't think I need to be locked up. Nor do I recognise many of my colleagues - and indeed rivals - from your description.

We need more dedicated, capable, intelligent people to run for public office, for all our sakes. The kind of sentiments you express only serve to put such people off running, making it all the more likely that those who do run are the worst of the political breed. It's a self-fulfilling prophecy, and not a helpful one.

#88 ::: Aconite ::: (view all by) ::: April 20, 2007, 07:19 PM:

#86 ::: Emma Anne @ 86: How about if we remove the stigma from taking the meds, instead of trying to hide out?

I'm not trying to hide. I'm trying to preserve my privacy. It's not shameful for me to take what medications I need; it is simply not your business, unless you are my medical provider.

#89 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 20, 2007, 07:23 PM:

Iain Coleman @ 87

I apologize if I offended you; that statement was at least partly in jest, and certainly hyperbolic.

I do believe that there are people running for political office who have an unhealthy desire for the power and privilege of that office; I wish there was an objective test to determine who fits that description, and who is sincere about making society work well; failing that, I'm going to continue to be skeptical of those in power or trying to become so. I will try in the future to do so without giving offense to those, like you. who are not part of the problem.

#90 ::: Julia Jones ::: (view all by) ::: April 20, 2007, 07:26 PM:

Bruce Cohen @85: The NIMH webpage is here:
http://www.nimh.nih.gov/healthinformation/bipolarmenu.cfm

With a booklet here:
http://www.nimh.nih.gov/publicat/bipolar.cfm

The latter is a long summary which mentions the distinction between Type I and Type II, and also mentions further down the risk of anti-depressant treatment triggering a manic or hypomanic episode. It's a risk, not a certainty.

The whole subject is something that is incredibly attractive to cranks of one flavour or another, so one has to be wary about Googling for information, but this page looks to be sensible, and gives links back to recent relevant papers:
http://www.psycheducation.org/bipolar/controversy.htm

#91 ::: Clifton Royston ::: (view all by) ::: April 20, 2007, 07:53 PM:

Aconite @ 88: Well said.

#92 ::: Hob ::: (view all by) ::: April 20, 2007, 07:55 PM:

As #45 says, the law in question only covers "controlled substances", defined as anything on Schedules II-IV - which are what most people would think of as controlled substances too. (That's not just the BoingBoing commenter's opinion, it's in the text of the law.) Examples of things on that list: OxyContin, Percocet, Valium, Ritalin. Examples of things NOT on that list: Prozac, Zoloft, Wellbutrin, Elavil.

I'm not crazy about this database thing either, but the idea that it's tracking antidepressants, let alone all your prescriptions, is a mistake.

#93 ::: JESR ::: (view all by) ::: April 20, 2007, 08:06 PM:

Julia Jones @ 82 (while I giggle because my legal name is Julia Smith): The other rapid onset reaction to SSRIs and some other antidepressants is for those of us for whom they are just bad stuff. I had muscle tremor and insomnia from the first, 1/4 strength dose of Prozac, and insomnia starting about three days in; Paxil also gave me visual field disturbances within 48 hours of my first dose and full-blown vertigo within a week. Low-dose Risperdal was a blessing for my dysthemia, but it's not a great idea for diabetics.

I wonder what the prescription record spies think of me: I have been on ADHD meds for fifteen years, and of late have taken hydrocodone and codeine for pain- not often, since opiates mess with the effectiveness of ADHD meds, and I tend to damage myself when distractable (which is, indeed, one reason I need opiates, that and the damage I did falling while on Paxil).

#94 ::: Kathryn from Sunnyvale ::: (view all by) ::: April 20, 2007, 08:20 PM:

Bruce @84

So, given the biochemistry you described in your post, how did that happen?

Assume disclaimers*. That said:

I'm going to bet that your depression had a strong 'apathy' component**. Problems and "things that need doing" seemed unsolvable, requiring an impossibly large amount of energy to start (other than small projects, or projects easily divisible into tractable sections, or projects where you were working with others).

For example, if you were contemplating the choices "Do nothing" or "Start the project because the deadline is in one week," you'd feel indifferent between the two. While you'd know that you should want to start the project, you couldn't make yourself feel it. i.e. you'd have apathy about the apathy. The apathy could mix in with depression (causing or be caused by or both).

Treatments for apathy focus on dopamine and noradrenaline (norepinephrine), not on serotonin. An SSRI wouldn't be as useful as a SNRI (serotonin and noradrenaline reuptake inhibitor) DARI or NARI, and a combined NDRI (noradrenaline dopamine RI) would be best.

Wellbutrin is a NDRI.

Other treatments for apathy include the other AD(H)D drugs such as ritalin (DARI).

-----------
* I'm not a medical researcher, although I've done some in the past. I can read and judge the papers, though. I'm not on the computer that has my copies of relevant papers (that bit I wrote about treating depression's pain? That's an essay I'm working on), so I'm going to go by memory only.

** "Apathy" as a diagnosis in itself, and as a problem separate from / orthogonal to standard depression, is a fairly new research field.

#95 ::: Iain Coleman ::: (view all by) ::: April 20, 2007, 08:27 PM:

Bruce@89:

You're quite right that "there are people running for political office who have an unhealthy desire for the power and privilege of that office": Tony Blair is an excellent example. In my experience, though, most people running for public office don't match that description.

There's no objective test in politics. The best way to improve politics is to have greater engagement and participation from the wider community. I'm not saying everyone should stand for election, but I do think we all have a duty to do our share of the often tedious and thankless work that is necessary to keep our democratic society going.

I do think it's a mistake to make sincerity the be-all and end-all. Jean-Marie Le Pen, for example, seems absolutely sincere in his wish to work hard to improve his country. He is also a racist bastard who shouldn't be let anywhere near the levers of power. The French had a slogan at their last elections, when they had to choose between Le Pen and Jacques Chirac: "Vote for the crook, not the fascist". They made the right choice.

#96 ::: Kit ::: (view all by) ::: April 20, 2007, 09:31 PM:

Re: #4:

Actually, that's a very hit-or-miss proposition, because that's essentially penalizing people who have gone off their antidepressants for legitimate reasons, or buy their drugs from Canada or Mexico, or whatever. There's quite a few scenarios where people go off of previously-prescribed antibiotics, at least according to what the database would say. Also to consider (though I think this may have been addressed by someone else) is the fact that antidepressants are prescribed for more than just depression, essentially punishing those people who fall into that category. Plus it still won't alert anyone to the undiagnosed, who are probably the ones who need some of the most help.

This seriously creeps me out and angers me. There are so many better things that money could've been spent on, like making the drugs needed more easily available (cheaper), instead of using it to essentially spy on people.

#97 ::: Vassilissa ::: (view all by) ::: April 20, 2007, 10:04 PM:

Kathryn from Sunnyvale at 15: something similar happened to some people at my university too, only in their case it was Australia's domestic security agency, ASIO. This was before 9/11. It was for the annual scavenger hunt, an event a lot of fannish people took part in: one of the items was "Get your name on an ASIO file." So, one of the teams looked ASIO up in the phone book and phoned them. Before they could ask about having a file opened on them, they got a sharp, shocked "How did you get this number?" in reply. And a file opened on them.

Re the main topic: I'm creeped out too. And that's coming from someone in a country where I'm pretty sure my entire prescription history was in some government agency somewhere - after all, they paid for (well, subsidised) it.

#98 ::: Michael Roberts ::: (view all by) ::: April 21, 2007, 12:15 AM:

Fifty-one? Viva Puerto Rico!

#99 ::: jurassicpork ::: (view all by) ::: April 21, 2007, 01:23 AM:

So explain to me how they didn't snag Rush?

#100 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: April 21, 2007, 02:51 AM:

Julia Jones @ 90

The whole subject is something that is incredibly attractive to cranks of one flavour or another, so one has to be wary about Googling for information,

That's precisely why I asked you for links; I was hoping to have at least a first approximation of something reasonable to start with. Thank you.

#101 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: April 21, 2007, 02:59 AM:

Kathryn @ 94

I'm going to bet that your depression had a strong 'apathy' component

Good bet; remind me to buy you coffee or other beverage of choice in payment next time I'm down that way. And thanks for the information; some day, with luck and longevity, I may start to understand what's going on inside my head.

#102 ::: Marilee ::: (view all by) ::: April 21, 2007, 03:32 AM:

I'm totally and permanently disabled, so I have Medicare and Plan D. Plan D comes with a program called Medication Therapy Management where my HMO is required to have a pharmacist consult with people who:

"(1) have multiple chronic diseases, (2) are taking multiple drugs, and (3) are likely to incur expenses that exceed a level specified by the secretary of the Department of Health and Human Services."

and that's me. I got a notice from my HMO about it a couple weeks ago that said a pharmacist would call me about it. She called yesterday and was very upset that I didn't want to sign up right away. I explained to her that my neurologist says I'm having brain seizures so I'm starting on Phenobarbital and increasing it at the same time I'm decreasing two other meds whose uses are probably covered by the Phenobarb, while the Phenobarb is also making my brain work better. I didn't want to start the program until I was more stable. She said "Oh. Good point." But she still insisted I call her when I'm ready.

So now I have four meds on restrictive schedules.

#103 ::: Alan Braggins ::: (view all by) ::: April 21, 2007, 06:06 AM:

>> never an absolutely impartial solipsist with a cat
> True. Anyone have a cat I can borrow?

Doesn't asking that question rather undermine any solipsist credentials?
(And, for the record, I think there are people who seek office for genuinely good reasons (and some of the power seeking attention seekers habitually do good as a way of being given more power and attention).)

#104 ::: Fragano Ledgister ::: (view all by) ::: April 21, 2007, 11:45 AM:

Lexica #63: That's a good point.

#105 ::: Nancy Lebovitz ::: (view all by) ::: April 21, 2007, 11:47 AM:

In re the apathy component of depression: I'm glad to see they're working on it--I'd been calling it inertia, and hoping that it would be distinguished from depression the way anxiety has.

Maybe they'll even figure out the sort of inertia/apathy which is much more paralyzing for doing anything practical than it is for pastimes.

#106 ::: JESR ::: (view all by) ::: April 21, 2007, 12:43 PM:

Nancy Lebovitz, I tend to call that pathological disinclination.

#107 ::: Clifton Royston ::: (view all by) ::: April 21, 2007, 01:25 PM:

#45, #92: Yes, that doesn't match up with what the law apparently said. There is more than one possibility here.

First, it's possible that whatever government official they talked to didn't understand the databases and what's in them.

Second, it's possible that the actual databases cover more than just prescriptions for controlled substances. The law provides funding and descriptions of what the databases must include to receive the funding, and descriptions of who must have access to them. Perhaps some states are putting more in. Perhaps there may have been tacit or explicit encouragement behind the scenes to have the states go ahead and mandate putting all prescriptions into the databases. There are 50 separate states now to go and research before anybody knows the answer.

At this point, we don't know one way or the other, but it is at least strange that some unnamed official expected to have that information.

#108 ::: Marilee ::: (view all by) ::: April 22, 2007, 05:03 PM:

NelC, #77, the databases are state-based and Bush gets meds from the White House physician.

#109 ::: stephanie ::: (view all by) ::: April 22, 2007, 08:22 PM:

I am a Family Practice physician in Ohio. To the best of my knowledge, the data base in Ohio at least only covers controlled, ie addictive, medications. I do not believe that it includes regular (non-addictive) antidepressants like SSRIs or Buproprion.

In Ohio, at least, the database is accessible only to liscensed physicians and pharmacists. I do understand that if information is in a database at all, the potential for abuse is there, and I am also concerned about that along with many other commenters in this thread.

However, I am of two minds about it because I find the database a very useful tool in certain circumstances. As a family physician, I treat a lot of chronic pain and other conditions that are often best treated with controlled substances like narcotics. I believe strongly that my patients with chronic pain, to make that my example, should be treated to the best of my ability, with a variety of treatments that may include narcotics.

But part of the cost to me of prescribing narcotics is that every day I see people who fit one of several categories. 1. People who are using drugs not for pain but to get high. 2. People who are selling the drugs I prescribe on the street. Oxycontin, I have been told, has a street value of $1 per mg,so a 40 mg pill would be $40 a pill. If I give out a script for 60 of those pills a month, the income can be considerable. 3. People who are using it to treat psychological pain rather than physical pain. These people are in real distress and need to be treated, but I feel treating the psychological problems would be the first priority. Depression can certainly exacerbate any pain that is already there and can also cause fibromyalgia, a condition that makes just about all the muscles in your body hurt. But while pain meds may be part of the treatment, they should not be the whole treatment.

My job as a physician is to sort out the above categories of people from the people with true chronic pain. I generally try to give people the benefit of the doubt, but if they give me reason for concern, I become warier about giving them pain meds. Possible reasons for concern: they lose their script more than once, or it gets stolen, or the pills accidentally fell in the toilet, or the dog ate it, or whatever. Another reason for concern would be if they don't want to try any treatment that is not a narcotic. They dont't show up for physical therapy. They are allergic to all drugs for pain that are not narcotics. They don't want to get injections in their back, even if that would relieve their back pain.

One of the big warning flags for me, though, is if I learn that while getting narcotics from me, the same patient is getting narcotics from another physician. I generally learn of this one of two ways. They try to fill both scripts at the same drug store and the drug store calls me. Or they have Medicaid, and the pharmacist notices that Medicaid lists the patient as having just filled a script two days ago at a different pharmacy from a different physician. The way to avoid getting caught is to pay cash for some of your scripts, although that will raise most pharmacists' level of concern, or use two different insurances, like Bureau of Workman's Comp plus your regular insurance.

The reason I like the database is that if I am concerned about someone abusing the drugs I give them, I can look them up and see if they have been getting scripts from another physician that have been filled in the state of Ohio. Which helps me feel more comfortable giving narcotics to the people who really need them. I do not use this database cavalierly. In fact I have used it twice so far since it was unveiled last fall, but I do feel it is an important tool if used appropriately.

May I also say how much I hate being put in the position of policing my patients. Many physicains respond to this but just not prescribing narcotics at all. But I do feel it is important to treat pain as best I am able, which often means giving controlled substances. If I am going to be responsible about my prescribing and my commitment to not cause harm to my patients though, then I also need to watch who I am giving controlled substances to.

Sorry about the long post.

#110 ::: Meg Thornton ::: (view all by) ::: April 23, 2007, 04:51 AM:

View from down here in .au...

I think we already have the sort of database you're speaking of (or at least, a couple of its close cousins). As part of our socialised medical schemes, there's a "safety net" - a point at which you can start receiving reduced cost medical treatment. In order to track where you're at with your "Safety Net" items, each visit to the doctor has to be tracked, as does each visit to the pharmacist. The amounts of various drugs purchased are tracked as well, as this goes toward the total for our Pharmaceutical Benefits Scheme. However, I think our current privacy laws strip out a lot of identifying information from the data before it's submitted to any of the databases - so the nice people at Medicare can know when I went to the doctor, and how much I paid for it, but they can't find out why. Alternatively, the ones administering the PBS will know that thyroxine and Zoloft were purchased, but they won't know by whom or on what date, unless this last is significant. The people who run the PBS safety net will know that X medicare number purchased Y medication on date Z, but they won't be able to link my medicare number to me.

#111 ::: Meg Thornton ::: (view all by) ::: April 23, 2007, 05:10 AM:

This is for the "depression is hell" subthread.

I have depression. Have had since I was about fourteen. I started taking medication for it when I was about thirty (so six years ago now). My family has a history of depression, with both of my parents, three out of four of my grandparents, one uncle, at least two aunts and a couple of cousins having depressive episodes on a regular basis. I've spent my time wanting to kill myself (I spent about two or three years with what I nicknamed a "salesdemon for suicide" living in my head - a cheery little voice which responded to *any* choice or decision with "don't forget, you can always kill yourself". I hope I cost the little bastard a promotion!) and I've spent some rather scary times driving down the road and realising that every pylon, every lamppost, every single bridge support was a temptation. Being on medication is a pleasant change - I can laugh, and I can enjoy myself. I have energy, rather than struggling to complete everything through chest-high treacle.

For those who are depressed or depressive, I offer my favourite metaphor to explain it to the non-depressed or non-depressive:

Telling someone who has depression to "cheer up" or "think positive" or "be happy" is rather like telling someone who is drowning to "breathe water". Trust me, we would if we could - it'd make our life a lot easier. But we can't. We're trying to stop drowning, don't think we aren't. Some of us are seeing therapists and taking swimming lessons to try and stay afloat. Some of us are using medication as a flotation device. We're doing our best, but the water is deep and wide, and it may take us a while to recover. If you want to help, you can throw us a rope - offer a shoulder to lean on, or some constructive help with everyday tasks that we're just too exhausted or apathetic to deal with. Just don't bother with the whole "breathe water" thing, okay?

#112 ::: crazysoph ::: (view all by) ::: April 23, 2007, 07:24 AM:

Stephanie @ #109 - I really appreciated your input, and I suspect I'm not at all alone in this.

Meg Thorton @ #111 Hear, hear. Especially your last paragraphs on what to tell those not suffering from depression.

Also, in general, very happy about the "depression is hell" subthread - including the considerations that intersect with a drugs prescription data base.

Crazy(and continuing to enjoy visiting here)Soph

#113 ::: albatross ::: (view all by) ::: April 23, 2007, 09:05 AM:

stepahie #109:

Thanks! This is a really nice additional data point.

My impression is that a lot of people get drug interactions without realizing it, because they have multiple doctors that don't always keep track of one another. I know my Mom is like this--she must have half a dozen active doctors at any time, and I'm sure they don't coordinate everything. I can definitely see the benefit of this kind of database for the pharmacist or doctor. I'm pretty sure she's not *trying* to game the system here, but I can see her doing herself some serious harm.

I've had the experience of having a pharmacist tell me not to fill something before, because of a drug interaction. Like "you can't take this and that together, why don't you call your doctor and figure out what to change." This happened because all my prescriptions were at the same pharmacy, and the pharmacist either noticed it on his own, or got it flagged by the computer.

I guess the question is whether this could be done in a more privacy-preserving way. The existence of the database almost ensures that it will be used by people who don't have the patients' best interests at heart.

There's a nice area of cryptography focused on this kind of problem, but the schemes developed never seem to see the light of day. It's cheaper to put it all in a database, put a legalese warning boilerplate on the screen, and assign everyone a PIN or password.

#114 ::: Mez ::: (view all by) ::: April 23, 2007, 10:04 AM:

Thanks, Meg, for both those recent posts. I'd also like to murmur "hear, hear" to #111. The simile of chest-high treacle is a good one; I remember thinking of a swamp or mudhole (having negotiated mangroves & reedbeds in younger, more active days) and suddenly remembering that the 'Slough of Despond' means a bog or swamp.

Altho' I now think I'd had dips into depression & inertia/apathy for a long time, it was only 5 years ago, hit by a 'perfect storm' of interlinked death, illness, financial strife & family stress that suicidal ideation appeared, more letting the illness take me down than active. It was in large part sheer mongrel stubborness & dislike of certain people who'd survive & thereby 'win' that clenched my fist into a grasp on life.

But now I'm trying to get clear of the anger & frustration that was literally driving me mad by about 2 or 3 years ago, and about exhausted my mental & physical reserves, so the new waves of death & illness since then have been deeply difficult to cope with, trying to find new ways.

The idea of chemical help is very tempting, but in the end didn't prevent someone close from taking their life after decades of treatment, plus help from support groups. OTOH, maybe that gave them those extra decades.

#115 ::: stephanie ::: (view all by) ::: April 23, 2007, 01:28 PM:

Albatross @ #113.

Certainly the best way to prevent drug interactions in your mom's case would be for her to have a list of her meds that she keeps updated and that she brings to all her doctors' appointments. But failing that, using just one pharmacy will hopefully catch the at least the worst of the possible med combinations.

The database would be less useful in her case because it would only show controlled substances and not all the other meds she is on. The database's primary goal really is to catch people who are knowingly and purposefully trying to get more addictive meds than their doctor thinks they should have.

#116 ::: stephanie ::: (view all by) ::: April 23, 2007, 01:28 PM:

Albatross @ #113.

Certainly the best way to prevent drug interactions in your mom's case would be for her to have a list of her meds that she keeps updated and that she brings to all her doctors' appointments. But failing that, using just one pharmacy will hopefully catch the at least the worst of the possible med combinations.

The database would be less useful in her case because it would only show controlled substances and not all the other meds she is on. The database's primary goal really is to catch people who are knowingly and purposefully trying to get more addictive meds than their doctor thinks they should have.

#117 ::: Bruce Cohen, SpeakerToManagers ::: (view all by) ::: April 23, 2007, 03:28 PM:

Meg Thornton,

Thanks for #111. So far the only people I've been able to explain to what depression feels like are my therapist and my wife; both of them have a strong interest in understanding, or at least accepting what I say. I'm glad someone came up with words that non-depressives in general can understand.

#118 ::: Marilee ::: (view all by) ::: April 23, 2007, 11:00 PM:

stephanie, #109, my doctors would rather I take narcotics for pain than acetaminophen. I hate narcotics -- they make me loopy and I lose the day. The neuro just started phenobarb, which is making me sleep forever. We agreed that I would keep track of when and how much acetaminophen I take, so I won't take too much.

And again at #115, I have a bright pink paper with meds, diagnoses, doctors, etc., in my wallet, the visor of my van, with my meds, in the drawer next to my recliner, and on the back of the door. I just got permission from the condo board to put a keypad lock on the front door. So far, I've been able to get to the door to let the EMTs in, but I'd like to be sure they can get in on their own.

#119 ::: albatross ::: (view all by) ::: April 24, 2007, 09:00 AM:

#116 Stephanie:

Thanks! I will suggest that to her, though she's about as inclined to take my advice these days as I was to take hers, when I was 18. I think she may just use one pharmacy, but I ought to ask her, since that would give a pharmacist one last chance to catch a dangerous drug interaction that her doctors missed or didn't know about.

#120 ::: albatross ::: (view all by) ::: April 24, 2007, 09:04 AM:

As an aside, I'm curious about the overlap here. Stephanie and some other posters have seen the controlled-substance database, and say that it doesn't include stuff like antidepressants. But the quote that started this discussion implied that some unnamed federal official had checked the database and found no antidepressants. The remaining possibilities look like:

a. There's another database that nobody but federal agents knows about.

b. The source didn't know that the database would never have antidepressants. (He just looked something up and gave the reporter a quote.)

c. The reporter misunderstood what was really said, which was something about not having been on known-addictive stuff.

#121 ::: ajay ::: (view all by) ::: April 24, 2007, 09:19 AM:

Learned from Stephen Fry on QI the other day that the NHS treats more people for depression than any other ailment. I was surprised; probably I shouldn't have been. (My guess was "back pain".)

#122 ::: BigHank53 ::: (view all by) ::: April 24, 2007, 10:12 AM:

Stephanie, thanks for your comment on use of databases wrt controlled substances. I don't think anyone here has a problem with catching criminals and preventing harmful drug interactions, but we've seen too many examples of government stupidity to want idiots poking about in our personal data.

On the depression subthread, the best description I ever heard for clinical depression was this: Imagine someone has replaced your brain with five pounds of roofing tar. You can still think anything you like, as long as it's black and sticky.

And lastly, in today's Cho news, it turns out that Virginia didn't bother to report his competency hearing (which would have placed him on the do-not-purchase list) to the feds. This concludes your lesson in the usefulness of security founded upon databases: garbage in, garbage out.

#123 ::: Mary Kay ::: (view all by) ::: April 24, 2007, 04:24 PM:

Julia at 82 -- I wish someone had known about or told me about that in 1992 when was an absolute textbook example. My doctor just though it was great the meds kicked in so fast and worked so well, though she did lower my dosage. It took about another 12 years for me to get the Bipolar 2 diagnosis.

I'm not sure there's a way to describe depression adequately to someone who's never been depressed. But I quit trying a long time ago. They never believe you and think you're exaggerating. Note that I've been suffering major depressive episodes since I was a teenager. The first time I had suicidal thoughts, and in fact, tested drowning to see what it felt like, was when I was 13. I didn't get anything to really help until I was 40. And they only help for 18-24 months and then I'm depressed again and have to start upping doses or trying new meds.

And yes, pain is greatly under-treated, esp. in the US, in part because the doctors are afraid of bringing the DEA down on themselves if they give you enough. Because it happens. I had major orthopedic surgery and my surgeon wanted me off the big guns and down to vicodin in about 2 weeks. I made him give me more, but it was a titanic struggle and I only had the energy for doing it once. Also of course, pain and suffering are good for your character.

MKK

#124 ::: Mary Kay ::: (view all by) ::: April 24, 2007, 04:25 PM:

Oh, and on the privacy issue. My husband has a number of security clearances. The FBI investigates us every 5 years as a matter of course. I have no secrets left anywhere, I'm quite sure.

MKK

#125 ::: Bruce Cohen (SpeakerToManagers) ::: (view all by) ::: April 25, 2007, 01:57 AM:

Mary Kay @ 124

I've had security clearances in the past, and so had a fair amount of interaction with the FBI. As near as I can tell, anything they know is so deeply hidden from them, that I'm not worried about it at all. Look up their history of database projects sometime: they haven't yet gotten anything to work even incorrectly on schedule or budget or within a factor of 5 of either.

The real concern for me is not what they know about me that's true, it's what they know that isn't. Ever try to get a mistake cleared out of your credit record? Getting a mistake out of a government database is much harder. And they really hate to admit mistakes.

#126 ::: Julia Jones ::: (view all by) ::: July 10, 2007, 01:56 AM:

An item that I thought worth mentioning for the people who were following the depression sub-thread -- there's a recent press release on the NIM website, the summary is that both type I and type II bipolar are underdiagnosed or misdiagnosed, and as a result many people are taking inappropriate medication -- in particular, antidepressants without accompanying mood stabilisers, which can actually worsen the condition:

http://www.nih.gov/news/pr/may2007/nimh-07.htm

#127 ::: Jenna ::: (view all by) ::: November 24, 2007, 06:32 AM:

I'm really curious about what conclusions would be drawn from this person's record. She was on increasing numbers of potent psyche meds for 17 years. Suspecting that the drugs were causing the increasing illness, she took herself off of all drugs, every one of them.

The suspicions were correct. The doctor was causing intractable major depression. The patient was on seven drugs at a time. So she was "seriously mentally ill", and then one day she wasn't.

What would a database observer say to that sudden blank page of drugs? I'd like to think that someone would indict that doctor for fraud, but I know that absolutely nothing would happen to that coddled wienie.

Here's more. Some of the drugs were the ones currently exposed as earning large kickbacks from Pharm companies. I suspect that he hooks patients with antidepressants and benzodiazepines, and then when they can't leave him without having withdrawals, he moves into the atypical antipsychotics known to be profitable for doctors.
Okay, I more than suspect it.

I also suspect that the database works only in one direction, against the honest and unsuspecting patient.


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