Robert Whitaker spoke to a full house at the NAMI Conference in San Antonio last month. For many his message was a hard one to hear. I was among them, a parent, whose son, Max, sat beside me. He’s been on and off antipsychotics for more than ten years to treat the psychosis that comes with his bipolar episodes. Whitaker was telling us that might have been a mistake. His review of various research studies indicates that a significant percentage of those with schizophrenia who did not receive antipsychotics or took them for a very limited time had better long- term outcomes than those who took them on an ongoing basis.
We all know that for years antipsychotics have been prescribed by doctors as the medications of choice and that most of those with schizophrenia have been told they’d need to stay on them forever. The research seemed to back that up. Yet Whitaker’s review found that those studies were flawed. Worse, he cites evidence that using antipsychotics long-term makes one more vulnerable to future psychosis. It’s called “oppositional tolerance.” While antipsychotics initially block the uptake of dopamine (the brain chemical believed to trigger psychosis), our brains eventually find ways to adjust, building new receptors and becoming even more sensitive to dopamine. So what did I hear? I heard that the medicine that was supposed to make those with psychosis better was making them worse. Long-term use of antipsychotics wasn’t just ineffective, it was dangerous.
I wanted to believe Whitaker wrong and looked for flaws in every statement. After all, my son and I had been told for years that antipsychotics were crucial to his recovery. I’m pretty sure every parent, family member, and person with mental illness in the room was as upset and amazed as I and as resistant to Whitaker’s findings. I’m not going to rehash those here. You can find them on the NAMI site.
As a parent, I have many questions:
- Does Whitaker’s review of the research tell the full story? Are there gaps? Is there contradictory evidence?
- Does it apply to illnesses other than schizophrenia?
- What particular antipsychotics were included in the studies? Is it necessarily true that all have the same outcomes?
- If there have in fact been brain changes as a result of the medication, can they be reversed?
- If his findings are correct, then what do we do about it?
- And how on earth do we treat people who are psychotic if not with antipsychotics?
But in the end, I found his research compelling. Even more so when I heard several times during the conference that Finland, which adopted selective-use of antipsychotics in 1992, has the best-documented long-term results in the western world.
Whitaker’s findings, if true, would require a new paradigm of treatment, one that might require that someone who is psychotic be given “asylum,” or “refuge,” a place to rest and recover with limited or no antipsychotics, using other effective treatments that include more than just medication. That seems impossible in our country, where the mental health care system is practically non-existent; where people are hospitalized for 3-5 days and released with a handful of prescriptions and a bag of samples; where insurance companies dictate release, arguing that recovery can take place outside of the hospital; and where too many psychiatric units are just holding tanks where little good treatment occurs and where patients are sometimes abused. If Whitaker’s findings prove true, it will take decades to address them and it will take money. How can that happen in a country where we don’t provide even minimal care and where funding continues to be cut?
By the time Whitaker concluded his talk, the room was heavy with anger, despair, and fear. Some people were angry at Whitaker for presenting studies that could prove inaccurate or incomplete and yet could have such an impact on so many. They were angry at psychiatrists and big pharma for promoting medication that could be harmful. Most difficult for those with mental illness and their families, me included, was the fear that the medicine they had relied on was damaging and that they had put their trust in the wrong hands.
My son, who as you’ll remember was sitting right beside me during Whitaker’s talk, is angry, very angry about what he heard; angry at doctors and hospitals who have prescribed and sometimes forced mediation on him, and the pharmaceutical industry that reaps tremendous financial benefit. I’m scared that he will decide to quit taking his antipsychotic, and yet confused about whether he should. He’s been stable, healthy, and happy for several years. What will happen if he stops? Will he fall back into the pit of mania and psychosis, end up on the streets as has happened so many times before? Can he find better ways to stay healthy and continue his journey to fuller recovery?
Since that lecture, my son and I have joined the conversations about the use of medication that are taking place on blogs and websites all over the web, including this one — Mad in America. We’ve found reasonable responses from reasonable people as well as the inevitable extremes from both ends of the spectrum. I’ve realized I’d been lazy, taking the word of doctors and other professionals and believing what has been general consensus, instead of doing the hard work of educating myself, knowing full well that when we educate ourselves we can make informed choices and take control.