Last week’s post – 18 percent – raised questions about company sponsorship and seeming patient empowerment websites. A comment by Johanna Ryan afterwards kicked off this follow-up post.
Johnson & Johnson gave NAMI $340,000 last year, and $540,000 in 2016.
Part of that was a dedicated $100,000 grant for “First Episode Psychosis.” This is where things get serious. People of Louis & Zach’s generation – see 18 percent – are very important to J&J just now. Here in the States (and worldwide) there is a very big focus on developing programs for young adults facing a first psychotic episode, with the stated goal of improving their long-term prospects.
Some of these programs are pretty good — innovative, open to exploring the real-life stresses that may have triggered the episode, committed to using meds as sparingly as possible. The Foundation for Excellence in Mental Healthcare helps support a number of these.
Others are just the opposite. J&J in particular is putting its money on depot antipsychotic injections that deliver a 1-3 month dose at a time. They are sponsoring studies where young folks like Louis are essentially given no way out of “medication adherence.” They are placed on depot injections of a fairly high dose of Invega (paliperidone) for two whole years. Many of these young people will NOT be in the first stages of a lifelong disease with a biological basis at all! And even for those who may be, this course of treatment will exact a high price.
THAT is the treatment approach NAMI will “educate” the parents of guys like Louis about. Your kid has a brain disorder that modern medicine understands, but he does not. Lifelong Medication Adherence is his only hope. Do what you gotta do to make that happen — and don’t forget our injectable products! Invega Sustenna (one month, $1667) and Invega Trinza (3 months, $7500).
There are many roots to the concept of recovery in mental health, dating back to Clifford Beers in the early 20th century, working through to ideas of tertiary prevention in the 1960s, when it was discovered that people locked up for a long time became institutionalized and might need to relearn social skills in order to “recover” fully – in order to be able to relegate the illness to just another episode in their life rather than have it define them.
In the 1990s, a new recovery wave swept in, symbolized by movements like Mad Pride, and fuelled by a legitimate anger at a continuing failure of psychiatry to work with the people.
But in the 1990s it appeared a new psychopharmacology, of which Prozac was then a potent symbol, and a new genetics, with celebration of the Human Genome Project, were born and had made it seem a new human was about to emerge. Those who might have been expected to spot slick marketing didn’t.
Against this backdrop, companies marketing the then newer antipsychotics, drugs like Zyprexa, Risperdal and Geodon embraced the recovery message. How else would anyone recover other than by taking their drugs conscientiously?
Seducing teenage boys with designer clothes used to be an easy thing to do. They may have gotten smarter now but a decade ago, I was confronted with a teen who hadn’t committed suicide because I was told – in all seriousness – he wasn’t wearing the right clothes. Couldn’t be found dead in the wrong clothes.
Its even easier lead a bunch of shrinks up the garden path, the more sophisticated the easier. A decade ago I participated at a debate in the Institute of Psychiatry:
Swallowing it whole: this house believes that psychiatrists are unable to resist the seductive messages of the pharmaceutical industry.
Cymbalta was not then the blockbuster it is now. Cymbalta is a dustbin drug. Lilly had junked it a decade earlier as unlikely to be a success – but short of other drugs and, perhaps increasingly convinced shrinks would swallow anything, they had brought it on the market.
Invega had just been released with striking images like the one above – striking because the image might convey recovery to some but is also a Freudian slip. Invega is a metabolite of Risperdal. Risperdal breaks down in the body to Invega. You want Invega cheap – just take Risperdal.
So the shrinks were told there is not a thought in their teeny little minds not put there by one pharmaceutical company or another – within a few years they would be prescribing Cymbalta and Invega hand over fist.
They voted against the motion. No – we are sophisticated evidence based consumers they said.
The result – Invega and Cymbalta have since been $3-4 billion blockbusters for pharma.
A tragedy is something someone brings on themselves. Those who have favored recovery and believed more is possible from mental health than we have been getting have in general been anti the idea that schizophrenia is a chronic disease. They see this as a message of doom that militates against recovery.
There is a real opportunity to win and win big opening up. This does not stem from any evidence that talking therapies or open dialogue or other recovery based programs do a better job for schizophrenia than the meds do. When the antipsychotics were used first in the 1950s and 1960s they came with far more in the line of support and recovery groups – at least in Europe – than we have now. These groups along with the meds seemed to work and up to the mid-1960s led to the impression that a full recovery from schizophrenia was possible.
The opportunity opening up now is that schizophrenia is vanishing. This illness appeared in the 19th century and rose dramatically in frequency after that converting asylums from soteria houses where there was an expectation of recovery into warehouses for the chronically ill. There continued to be psychotic disorders where there were full recoveries – 20 – 25% of all psychotic admissions – but these were not schizophrenia.
Since about 2005 in North West Wales new cases of schizophrenia have been drying up. We have had almost no new cases for a decade. What we have lots of instead are drug induced psychoses, severe personality problems and some strange motor disorders we’ve never seen before – but not classic schizophrenia.
We published on this years back. The original article speculated about the role of lead in the environment as a causative factor in the increase 150 years ago and decline now but the BMJ didn’t want that in the paper.
Pretty well everywhere I go now or meet people from the US to Australia there is a similar story – of schizophrenia vanished or vanishing, replaced by other problems – although no-one has published about this.
Given this development, the tragedy would be to continue to fight a set of schizophrenia wars – to fight in the trenches over the issue of whether schizophrenia was ever a chronic condition – and fail to notice that there is a real opening to reconfigure services.
Bureaucrats are not interested in what schizophrenia was or is – they are interested in the idea of whether they can save a dollar and whether they can tweak the figures to make themselves look good. If schizophrenia has retreated and psychotic disorders are much more likely to show a full recovery – as they did in the 1850s – what kind of facilities and services do we need. If our biggest psychotic problem is drug induced psychoses, what should we be doing about this?
Is Invega Sustena a good idea when the biggest single killer of patients with schizophrenia is not the metabolic syndrome these drugs cause but suicide in the first year or two after diagnosis linked to taking the wrong meds for them?