How do doctors learn about the drugs they prescribe? It’s an important question, but one without a straightforward answer. For doctors like me—who have been in practice for more than a few years—the information we learned in medical school may have already been replaced by something new. We find ourselves prescribing drugs we’ve never heard of before. How do we know whether they work? And whom do we trust to give us this information?
I started to think about this question as I wrote my recent post on Nuedexta, a new drug for the treatment of pseudobulbar affect. I knew nothing about the drug, so I had to do some research. One of my internet searches led me to an active discussion on a site called studentdoctor.net (SDN). SDN is a website for medical students, residents, and other medical professionals, and it features objective discussions of interesting cases, new medications, and career issues. There, I found a thread devoted to Nuedexta; this thread contained several posts by someone calling himself “Doogie Howser”—and he seemed to have a lot of detailed information about this brand-new drug.
Further internet sleuthing led me to a message board on Yahoo Finance for Avanir Pharmaceuticals, the company which makes Nuedexta. In one of the threads on this board, it was suggested that the “Doogie Howser” posts were actually written by someone I’ll call “TS.” Judging by the other posts by this person, “TS” clearly owns stock in Avanir. While “TS” never admitted to writing the SDN posts, there was much gloating that someone had been able to post pro-Nuedexta information on a healthcare website in a manner that sounded authoritative.
Within 24 hours of posting my article, someone posted a link to my article on the same Yahoo Finance website. I received several hundred “hits” directly from that link. Simultaneously (and ever since), I’ve received numerous comments on that article, some of which include detailed information about Nuedexta, reminiscent of the posts written by “Doogie Howser.” Others appear to be written by “satisfied patients” taking this drug. But I’m skeptical. I don’t know whether these were actual patients or Avanir investors (or employees); the IP address of one of the pro-Nuedexta commenters was registered to a public-relations firm in Arizona. Nevertheless, I have kept the majority of the posts on the blog, except those that contained personal attacks (and yes, I received those, too).
The interesting thing is, nothing “TS”/”Doogie Howser” said about Nuedexta was factually incorrect. And most of the posts I received were not “wrong” either (although they have been opinionated and one-sided). But that’s precisely what concerns me. The information was convincing, even though—if my hunch is correct—the comments were written for the sake of establishing market share, not for the sake of improving patient care.
The more worrisome issue is this: access to information seems to be lopsided. Industry analysts (and even everyday investors) can have an extremely sophisticated understanding of new drugs on the market, more sophisticated, at times, than many physicians. And they can use this sophistication to their advantage. Some financial websites and investor publications can read like medical journals. Apparently, money is a good motivator to obtain such information and use it convincingly. Quality patient outcomes? Not so much.
So what about the doctor who doesn’t have this information but must decide whether to prescribe a new medication? Well, there are a few objective, unbiased sources of information about new drugs (The Medical Letter and The Carlat Report among them). Doctors can also ask manufacturers for the Prescribing Information (“PI”) or do their own due diligence to learn about new treatments. But they often don’t have the time to do this, and other resources (like the internet) are far more accessible.
However, they’re more accessible for everyone. When the balance of information about new treatments is tipped in favor of drug manufacturers, salespeople, and investors—all of whom have financial gain as their top priority—and not in favor of doctors and patients (whose lives may be at stake), an interesting “battle of wits” is bound to ensue. When people talk a good game, and sound very much like they know what they’re talking about, their motives must always be questioned. Unfortunately—and especially under the anonymity of the internet—those motives can sometimes be hard to determine. In response, we clinicians must be even more critical and objective, and not necessarily believe everything we hear.
I think most of us take all the information with a grain of salt. If it seems like there’s a reasonable chance a patient will benefit from the new drug, balancing risks and possible benefits, we discuss it with the patient. I try to let the patient know how much or how little experience I have with the drug. If it works and the patient tolerates, the patient usually decides to continue taking it. We cross the bridge of long term benefits and risks when we come to it.
“When people talk a good game, and sound very much like they know what they’re talking about.” But that is also how we decide if a doctor, or any ‘expert’ for that matter is acting in our best interest. It is often after the fact, sometimes when it is too late, to realize it was a ‘game’.
As a victim of severe medical malpractice I know the game, unfortunately by the time I realized (after the fact) the surgeon was essentially a con-man, convincing me and my parents that he knew what he was talking about (after all, the surgery was named after him) it was way too late.
As a chronic pain patient one if the things we learn, hopefully early on, are the rules of the ‘pain game’,* i.e. the myths and stereotypes about those in chronic pain* and how doctors expect us to act and speak if we are to be taken seriously and be believed.**
All of medicine, the reason a patient relies on a certain doctor, from my experience as non medical hospital, private doc office and patient is based on the the doctor sounding very much like he(she) knows what they’re talking about.
author A PAINED LIFE, a chronic pain journey
( http://apainedlife.blogspot.com/ )
*Neal, Helen, THE POLITICS OF PAIN, McGraw-Hill, 1978
**Levy, Carol A PAINED LIFE, a chronic pain journey, Xlibris, 2003
A good place is the “drug information portal” at the National Library of Medicine.
I’m also interested in the pharmacology side, after having an “aha” moment reading (blogger) The Last Psychiatrist’s piece on how Seroquel works. He makes the point using a “rum fountain.”
Jackie, thank you for this link. This is a wonderful resource.
The American people need more transparency, not only from psychiatric research, but medical research as a whole.
An article about what’s taking place at Stanford to address this issue –
I’m thankful that some of this is taking place. There needs to be more.
You asked me to tone it down. I’ll do my best.
I am an investor in Avanir who posted comments to your article on Nuedexta. By the way, I posted using my real name, which I also use when I post to the Yahoo Finance message boards.
I did a lot of research before making my investment and I continue to read everything I can find about the drug. So, yes, I believe I can bring a lot to any discussion on the topic, although I agree that I should disclose my financial position.
However, unlike you, I am not staking my professional reputation on my opinion about Nuedexta or the research that led to its FDA approval. I could easily sell all my shares tomorrow (with a healthy profit) if I changed my mind about its prospects. You, on the other hand, might have a harder time reversing your opinion that “at this stage the marketing speaks far louder than the data, and the seeds are already being sown for the more widespread use of this relatively unproven agent.” So which of us is more objective or more open to evaluating the facts?
I think that investors have no more stake in being right about a stock than physicians do in being right about a therapeutic protocol.
What’s at stake are peoples’ lives — let’s not forget that.
I’m a pretty conservative person…
A believer in free-markets, states’ rights, parental control…
But when it comes to Pharma, I don’t know what to think.
I’ve read that it costs approximately a billion (just under) to get a drug FDA-approved, and so I know that the pharma industry needs to re-capture those costs, through agressive marketing, before a drug goes generic.
A non-profit approach hardly seems plausible, in relation to the costs of research… At the end of the day, it’s hard to know what would work better, but I’m sure that we can do better…
The drugs hit the market, and it is sometimes years before we know of the fallout (with any drug, not just psychiatric drugs)… “Adverse event” reporting is so highly under-reported, even in emergency rooms across the country.
What are the answers?
I’m not sure.
I only know that the process we have is not working.
Marcia Angell, M.D. – Harvard Ethics –
Thanks for your honesty and for disclosing your investment in Avanir. (For the record, I have no position in Avanir or any other pharmaceutical company.) With all due respect, though, I think my opinion is entirely objective. I’m evaluating the evidence and will adjust my treatment approach accordingly. I will use Nuedexta if it proves to be a cost-effective approach to incapacitating symptoms in my patients. That’s how good medicine should work.
I write these posts not to disparage new drugs or to criticize big pharma (and its investors) as being greedy or unethical. Rather, I just want to open people’s eyes to some of the games being played behind the scenes, and evaluate the evidence for and against new treatments. Unfortunately, the scientific underpinnings of psychiatry are very tenuous, and I simply want to help doctors and patients become more skeptical of what they see and hear.
I found it interesting that you listed Eye Movement Desensitization and Reprocessing (EMDR) with activities such as horseback riding.
The American Psychiatric Association (APA) stated that “EMDR was determined to be an effective treatment for trauma.” (2004)
The U.S. Department of Veterans Affairs (VA) stated that “EMDR was placed in the ‘A’ category as strongly recommended for the treatment of trauma.: (2004)
From the EMDR Institute –
As a former member of Safe Harbor’s Integrative Psychiatry Listserv who found good success with this treatment –
Integration of left/right hemispheres can help someone overcome trauma, and this is part of what takes place with EMDR.
The story of a Gulf-War veteran who was helped by EMDR –
Duane Sherry, M.S.
The Feds have now gotten involved in the Nuedexta pricing issue:
There are a lot of questions around timing of the inquiry by a few congress people. Just as the stock was heading to $5 which means a lot of mutual funds would qualify to buy which means the short cartel which has shorted 32 million shares and is out to lose hundreds of millions of dollars, Avanir get this inquiry. If anybody thinks there’s no corruption on Wall Street, that the large hedge funds who have journalists, analysts, brokers, even doctors in their pockets don’t have influence over politicians, then they’re dreaming.
Avanir spent millions and millions and many many years and developing testing Nuedexta. The passion behind it was to help those who have PBA and it was clear to them that Nuedexta helps with other conditions too. Every person involved in these trials had a genuine interest to get or give help. To summarize it all as just “intended to make money” is very far from truth. And I am one of those who thinks there may be a correlation between the inquiry by these few congress people and the short interest’s attacks. This was just another bullet in a series of bullets that short interest may have used to cap the stock to protect itself. These hedge funds are all about making money at any cost, not Avanir. These hedge funds have no morales. They lie like there’s no tomorrow. They misrepresent facts, they pay people to lie, and are willing to resort anything to kill small companies who are working hard to make the world a better place. Avanir has worked hard to survive in this very brutal environment to bring this drug to people who suffer, and the success stories we hear, are tremendous.