Robert Whitaker, author of Mad in America, spoke to a full house at the NAMI Conference in San Antonio on Saturday, making his case against the use of antipsychotics. 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. The key word being might. His review of various research studies seems to indicate 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 the medications of choice and that most of those with schizophrenia have been told they would 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 says 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 substance believed to cause problems), 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 schizophrenia better was making them worse. Long term use of antipsychotics wasn’t just ineffective, it was dangerous.
I resisted this message. Though the studies he cited applied to schizophrenia, I couldn’t help wondering how it applied to my son with bipolar disorder. I’m pretty sure every parent, family member, and person with mental illness who was taking antipsychotics was asking the same thing. I’m not going to rehash Whitaker’s findings here. You can find them elsewhere on the web or at NAMI.org/conference.
As a parent, I wanted to find flaws and 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 his findings are correct, then what do we do about it? Should those on antipsychotics be slowly weaned?
- If there have in fact been brain changes as a result of the medication, can they be reversed?
- And how on earth do we treat people who are psychotic if not with antipsychotics?
But in the end, his research was compelling. Even more so when I heard that Finland, which adopted selective-use protocol of antipsychotics in 1992, has the best-documented long-term results in the western world. I feel that NAMI has the responsibility to support further investigation and open up the discussion for a full airing from all stakeholders.
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 bag of samples and prescriptions; 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. 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 and yet could have such an impact on so many. Others 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 we have relied on was damaging and that we had put our 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 the pharmaceutical industry. And I am scared that he will decide to quit taking the one antipsychotic he is on, and I’m 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? He’s agreed he’ll speak with his doctor about what he’s heard, but I find myself wishing that our family could move to Finland.
** I welcome your comments about this difficult and controversial issue.