By EDWARD LARKIN and IRENE HURFORD AUG. 12, 2014
PHILADELPHIA — A FEW months ago, a patient came to our hospital, seeking help. One of us, Edward, was on the team that treated him. He was pleasant, if slightly withdrawn, and cogent. He was a college graduate in his 20s and had recently been fired from his job as a high school math teacher, because of unexpected absences. He had come to believe that government agents were conspiring against him, and he had taken to living out of a truck and sleeping in different parking lots. By the time he came to us, he was exhausted. A diagnosis became clear: he had schizophrenia.
We admitted him to the hospital, and after a few days, with his symptoms under control, we released him. Unfortunately, we prescribed a medication for him that could cause significant, permanent harm, instead of an equally effective drug with milder side effects — all because he was uninsured.
Schizophrenia, which affects 1 percent of the population and emerges in the late teens to early 20s, is deeply misunderstood. People who suffer from it are often suspected of being dangerous, but this is not usually the case, and antipsychotic drugs are very effective. Our patient was exactly the kind of person who, with the right treatment, could have weakened the stigma surrounding schizophrenia.
Antipsychotic drugs fall into two classes: the older ones, like Haldol, and newer ones, like Abilify and Latuda. Both classes are equally effective at treating some of the worst symptoms of schizophrenia, specifically the hallucinations, delusions and paranoia that cause social alienation. (They’re not effective for treating “negative symptoms,” like low motivation.)
But the older drugs can cause a multitude of serious side effects, including a potentially devastating one called tardive dyskinesia. This condition involves unsettling, animalistic smacking and wagging of the lips and tongue. At its extreme, it can affect the entire body. It occurs in 20 percent or more of patients who take the drugs long-term, and it tends to start so mildly that patients can’t identify it in time to stop taking the drugs. It is often irreversible.
The newer drugs have lower rates of tardive dyskinesia (estimates vary, but most likely less than half or one-third the risk), although they can cause weight gain and predisposition to diabetes, among other side effects. The newest among them, however, have decreased these risks, too. And a 2006 study showed that patients were more likely to keep taking the new drugs than the older ones.
As a result, most psychiatrists prefer the newer drugs, especially for younger people, and they should have been the clear choice for our patient.
He didn’t have the luxury of choice, however, because he was uninsured, and he was explicit about the fact that he didn’t have much money to spend on medications. So we had to prescribe him Haldol, which costs about $20 per month, instead of one of the newer drugs, which can cost more than $600 per month.
Had our patient been lower functioning, he might have qualified for disability benefits and Medicaid, which would have covered the new drugs. Many people who are much more severely affected — homeless individuals who are floridly psychotic, for example — receive the newest and best of our antipsychotics. They spend more time in the hospital and get more intensive case management.
Our patient was, in effect, penalized for being employable. People with schizophrenia are especially poorly suited for an employer-based health insurance system, because even if they are capable of working, their symptoms can lead to frequent job changes and firings. The Affordable Care Act should help, as it expands Medicaid to all people earning up to 138 percent of the federal poverty line. Pennsylvania, however, has so far decided not to participate in the expansion.
Some might argue that our treatment choice was an example of cost-effective medicine. New antipsychotics aren’t clearly more cost-effective than older ones, so why not save hundreds of dollars per month? For our patient, though, it isn’t simply the difference between more or fewer symptoms. It’s potentially the difference between a life spent gainfully employed thanks to consistent treatment, and a life spent in and out of treatment and increasingly out of control, stopping and starting medication, and always under threat of a disfiguring side effect.
A 2002 study showed that 70 percent of those with well-controlled schizophrenia still worried about being viewed unfavorably because of their illness. Better treatment for patients like ours is an important step in changing this. Hopefully he can become a model of how well those with schizophrenia can integrate into society. But if he ends up getting tardive dyskinesia, he may be alienated even further.
These issues will be amplified as progress is made in discovering the mechanisms of psychiatric disease, as it likely will be, thanks to the billions of dollars that are now going to neuroscience research. We can already see the results of that kind of investment in oncology, where extravagantly expensive specialty drugs are coming on the market. But as we make much-needed progress and develop new, expensive treatments that are clearly superior to old, cheap ones, we have to ask: Will those with the most to gain still receive a lower standard of care?
Edward Larkin is a second-year medical student at the University of Pennsylvania, where Irene Hurford is an assistant professor in the department of psychiatry.