Tuesday, October 19, 2010

The Whitaker Controversy: An Irony in Search of Nuance

This is a slight detour from my series based on talking points raised by Robert Whitaker's eye-opening "Anatomy of an Epidemic." As many of you know, in July this year the National Empowerment Center, a peer-run organization that takes a dim view of psychiatry and meds, invited Whitaker (pictured here) to deliver the keynote at its Alternatives conference in Anaheim.

There was one catch. The National Empowerment Center is bankrolled by the federal government via SAMHSA. SAMHSA did not like the Center's choice and disinvited Whitaker. Stupid is entirely too mild a term to describe this appalling absence of thinking. The group MindFreedom, with a strong antipsychiatry bent, organized a protest via the internet, and within two days Whitaker was reinvited.

At the conference in early October, it was revealed that Whitaker's restoration had come with strings attached: He was reinstated as a keynoter, but not allowed to present a workshop that had also been scheduled. In addition, an establishment psychiatrist was invited to deliver a second keynote with the stated purpose of discrediting Whitaker, without allowing Whitaker the right of rebuttal.

Stupid-stupid-stupid. The affair, naturally, raised accusations of government censorship, and the blogosphere was rife with outrage. The exception was a piece by JD Jaffe on the Huffington Post, which (after libeling Whitaker) questioned why our tax dollars were financing this sort of conference in the first place. In his own blog on Psychology Today, Whitaker interpreted Jaffe's piece to mean that certain independent-minded groups "risked losing their funding" if they did not fall into line.

The point everybody missed, of course, was that this was neither a censorship issue nor an intimidation issue. When someone else is putting up the money, then that someone gets to call the shots, be it an investor, a donor, or the federal government. There is no exemption for mental health advocacy groups who claim to be the voice of the people.

Pathetically, the National Empowerment Center and such groups as the California Network of Mental Health Clients could not exist for one day without federal or state government largesse, such is the sorry state of mental health advocacy in America.

These advocacy groups are closely aligned with the antipsychiatry movement, whose members nurse a visceral hatred against the most successful of the mental health advocacy groups, NAMI, which Whitaker mischaracterizes in his blog as "powerful." If NAMI were truly powerful, government agencies would be quaking in their boots, mental health services in the US would be a model for the rest of the world, and our jails would not be the largest de facto psychiatric facilities in the country.

Whitaker and others are on more solid ground in pointing out NAMI's heavy reliance on Pharma funding, but if money corrupts, then the National Empowerment Center and the California Network of Mental Health Clients and other groups need to send back their government checks. Then these groups need to do what real advocacy groups do - hustle for members, badger elected representatives, build alliances, offer real services, and dive under the seat cushions for spare change.

Ironically, they would be wise to model themselves on the people who founded NAMI, who did just that. While I'm at it, NAMI would be wise to model itself on the people who founded NAMI.

Three years ago, I requested media credentials to attend the Alternatives conference in St Louis. I was refused. For the record, I have only been refused by one other group - the Society of Biological Psychiatry. NAMI has welcomed me as a journalist, as has DBSA, the American Psychiatric Association, the International Conference on Bipolar Disorder, and numerous other organizations with nothing to hide. 

I could have paid the $300 or whatever Alternatives was extorting from paying customers, but then the conference would have been playing to empty seats. Mental health consumers don't have that kind of money, much less money to get there and stay there. What happens is SAMHSA picks up the tab, provided you're willing to jump through the hoops in applying for a "scholarship."

So: No media. Hand-picked attendees. Don't get me started ...

In the meantime, Robert Whitaker is a journalist who has done his homework. His book represents the strongest challenge to psychiatry by far, based as it is on facts rather than empty rhetoric. He may be championed by the antipsychiatry crowd, but his only agenda is to sell his book. In his own words, he wants an honest discussion. Let's have it ...

Disclosure: I serve on the board of NAMI San Diego, which receives hardly any funding from Pharma. The views expressed here are entirely my own.


Tony the cretin said...

The problem is multifactorial. And everyone takes an extreme position. There is the "all medications are good" camp and the "all medications are evil" camp, but few who argue you take the good with the bad. I understand that the "meds are evil" camp consist of people who have be hurt by medications and bad doctors, but they seem to fail to understand that not everyone has the same experience. The "all are good" largely ignore these bad experiences. When people are treated and everything works out, they gravitate to the "good". When people have bad effects, the only loud voice out there tells them that is what you get with medications and you should join our camp to stamp them out. There is little information that says the process is largely trial and error because we don't know everything about the brain. That last point is important: our range of knowledge is limited, but the average Joe doesn't understand that. It requires, as you said, nuance, but the average person wants everything in black and white so they gravitate to the extremes.

I found it profitable to look in the murky middle ground. I have had meds make my illness worse or only give me terrible side effects without benefit. I could have joined the "evil meds" camp, but I couldn't accept my awful symptoms as just being me (and I should embrace my differentness). Instead, understanding the good and the bad and doing a lot of research, I kept trying while keeping careful records for my doctor. 15 years and my "differentness" is not weighing me down like a ton of bricks and psychosis having me on edge all the time. The medicine is not perfect (so much for the "all is good" camp), but the benefits far outweigh the bad. (I curse how one medicine is SO expensive, but it will be generic soon.) I found that the nuance was the right path.

There is also a problem about the dearth of long-term studies of treatments. CATIE is an exception, but even it had problems. Whitaker talks about one long-range study of different treatment options for schizophrenia. After reading this study myself, I think Whitaker has drawn the wrong conclusion (meds are bad). The nuanced conclusion by the authors was that treatment has to be looked at on a per case basis. But there needs to be more studies that look at the various treatments over long periods of time, something the pharma studies don't or can't do. If there was more government funding for academics to tackle this, maybe we would have a clearer picture about what works and what hurts.

John McManamy said...

Great comments, Tony. The nuances are certainly lacking in the conversation. Case in point is antidepressants, which I have raised on this blog a number of times. We know they work for certain subpopulations of depressed individuals. The catch is we don't know which ones, and that it's not in the interests of pharma to find out. And psychiatry is too lazy even take educated guesses. Thus, we are forced to play pill roulette. You can understand the patient frustration. We also know antidepressants may cause harm on individuals with bipolar and perhaps also with recurrent depression, but doctors still hand them out to these groups like candy. Again, angry and frustrated patients. Opinion polarizes, nuances are lost.

It's only going to get worse. As psychiatry grows more threatened, they will become more strident. As patients don't get well, they will become more vocal.

As you can see, I am finding it more and more frustrating to be writing in this field. What's a guy to do? :)

Ruth Z Deming said...

excellent informative fair-minded post, john! i've alerted members of New Directions, the largest mood disorders support group in the Philly area, to Whitaker's book (it's on our website, as are the writings of Peter Breggin, MD).

one major problem w/whitaker's theories are that meds do work. all of our members are on meds and can't live w/o them!

what gives? (rhetorical qustion)

John McManamy said...

Hey, Ruth. Very important question. I hope to get into this in future posts. The quickie version: Whitaker contends that a lot of what is wrong with us is caused by our meds. For instance, depressed people get turned into bipolars by being prescribed antidepressants. Now we're in really bad shape. Then we're put on an antipsychotic and now we're in really bad shape. It's not just the side effects we all know about. The symptoms over time, according to Whitaker, get worse, too. More depression, more mania, more psychosis, more anxiety, more cognitive dysfunction. And each time, the doc gives us more meds. It's a never-ending cycle.

I'm not saying Whitaker is right, but he raises a valid point, based on lots of research, that we all need to be talking about. I'd be interested in what New Directions thinks of this. This would make a really great discussion topic. For instance, do most of the people in your group remember feeling better BEFORE they went on meds? Do they think they might be better right now if they had never gone on meds?

There are no right or wrong answers here. I'd be very interested to find out what the people in your group think.

AliceA said...

John you point out that NAMI, San Diego does not receive any funding from Big Pharma, however they are an affiliate of an organization that does, correct? Do they receive any technical assistance from NAMI on a state or national level (indirect funding from Big Pharma)? And now that Big Pharma helped NAMI figure out how to craft the MHSA so that Big Pharma wouldn't have to openly fund NAMI any more, does NAMI San Diego receive any funding from the MHSA? If so, why? Shouldn't all that funding be going to patient care rather than to a non-profit group?

John McManamy said...

Hey, Alice. Good question. Point by point.

1 NAMI SD is linked to state and national NAMI, but the idea of top-down support and funding is misleading. Yes, there is some benefit, but the national and state orgs would not exist without without the locals.

2 NAMI has signature programs such as Family to Family. There is some technical support from above, but the innovation from below is what makes NAMI work. F2F and other programs were developed at grass roots. NAMI SD has also developed its own stuff, as well..

3 Money corrupts. MHSA funds CA counties. NAMI SD relies way too much on county funding - to the point where I feel NAMI SD is becoming an agency of the county. I am very uncomfortable with this.

4 Govt funding is as corrupting as Pharma funding. More so, in many cases. Everyone is in on the act. You can't operate, otherwise. Just so long as we're all honest about it.

5 Govt funding comes with a lot of strings attached. They call the shots. This is a fact of life.

6 I wrote this piece 3 years ago. NAMI SD does stellar work, but its relationship to the county has changed. Today, my disclosure would have stated that fact.

7 I recently stepped down from the NAMI SD board.

John McManamy said...

One more point, Alice. County grants are not lump sum donations to NAMI SD, where we can do anything it wants with the money. Contracts go out for bid for specific programs/services. Various agencies (including NAMI SD) will bid for these contracts, assuming the agency feels the contract falls within their mission and abilities. One of the county contracts NAMI SD successfully bid on was an Infoline. Trained personnel handle calls and refer people to services, etc.

So MHSA through the counties is not handing out money to NAMI SD and others to spend any way it likes. It goes directly to fund various services via the agencies that provide the services. The agencies are held fully accountable.

I have no objection to this. NAMI SD serves a lot more people now than five years ago.

But the downside is when an organization becomes too reliant on one funder. Then the organization reacts rather than acts. This happens in all situations, with all groups, with all funders.

Tie all this back to the consumer/survivor movement. The Feds are putting up the funding, dictating which speakers can speak at conferences and who can attend (on scholarships). In effect, they are running the show.

I don't have any answer to this. Every org needs money. But let's be honest about it. The consumer/survivor movement has been severely compromised. So no cheap shots at NAMI. No pot calling the kettle black. We're all trying to do what we do best.