'i just want my life back': why are people with schizophrenia waiting for medication that works?

katrina tinman was officially diagnosed with schizoaffective disorder around 2013. supplied

schizophrenia is deeply misunderstood

if everything you know about schizophrenia comes from how the illness is depicted on film, you’d have a pretty inaccurate picture, according to a 2012 study . you might think people with schizophrenia are violent killers, or at least unpredictable and prone to fits of violence. perhaps you imagine them seeing things that aren’t there, or slipping into other personalities. the patient is most likely a white man, someone whose mental illness is the result of childhood trauma, who has incredible creative ability, and may even be a genius.

but these perceptions are almost entirely false: research shows that schizophrenia is both a highly stigmatized and extremely misunderstood illness. people with schizophrenia, especially women, are more likely to be the victims of violence than perpetrators. there is a very small subset of people with the mental illness who are more prone to violence, but they’re part of a group that also has a history of violence and of substance abuse. people with schizophrenia don’t switch between different identities — that’s dual identity disorder. while visual hallucinations happen sometimes, they’re much less common than auditory hallucinations. some of the condition’s most common symptoms are a flat affect and what’s called avolition — the inability to find motivation to perform tasks that have an end goal. schizophrenia isn’t caused by abuse or trauma, and isn’t a romanticized form of genius — it’s simply a mental illness.

delusions and hallucinations are referred to as “positive symptoms” — not because they’re a welcome addition to someone’s life, which of course they’re not, but because they add an element to a person’s personality that wouldn’t be there for someone without the disease. there are also “negative symptoms” — things that aren’t there, but should be. negative symptoms can look like a lack of interest in other people or the world at large, social withdrawal and avolition. doctors have also recently recognized a third branch of symptoms — cognitive symptoms, which can involve trouble concentrating and difficulty making decisions.

treating the misconceptions of schizophrenia

negative symptoms can “interfere with a person’s relationships, engaging effectively in their educational pursuits, and also can be a hindrance in terms of working and employment,” says chris summerville, ceo of the schizophrenia society of canada (ssc). “and all those factors are very important in life.”

and while medication can play an important role in treating schizophrenia, it’s not the only tool — contrary to the findings of a 2012 analysis of schizophrenia on film which show drugs as the only treatment. summerville says talk therapy, psychosocial rehabilitation and peer support are also very important to recovery.

the evolution of antipsychotic medications

schizophrenia has been treated with antipsychotic medication since the 1950s. but that “old guard” of drugs — starting with chlorpromazine, and coming to include fluphenazine, haloperidol and perphenazine — often came with serious neurological side effects , including the risk of developing tardive dyskinesia, a movement disorder than can cause jerky, uncontrollable movements of the face and body. (webmd notes that these drugs are often inexpensive, especially compared to the newer ones, “which can be an important consideration when long-term treatment is necessary.”) 

but in the last 30 to 40 years, summerville explains, manufacturers have focused on developing more targeted antipsychotics that work on schizophrenia’s positive symptoms — usually, drugs that aim to block some of the brain’s dopamine receptors in order to diminish the number of delusional messages that get communicated to the patient’s brain. they are often referred to as “atypical” antipsychotics, indicating that they’re different from those older drugs. some of the most commonly-prescribed antipsychotics include aripiprazole (abilify), olanzapine (zyprexa), quetiapine (seroquel) and risperidone (risperdal). many of these drugs are very successful in hitting that target — reducing delusions and hallucinations, but not necessarily helping with negative symptoms.

chris summerville, the ceo of the schizophrenia society of canada (ssc). supplied

vraylar enters the market

in april 2020, health canada approved vraylar for the treatment of adults living with schizophrenia or bipolar i disorder. the move was applauded by the ssc, as well as the institute for advancements in mental health, a toronto-based mental health charity.

but in late august of this year, after a review that involved patient and clinician outreach, expert committee meetings and feedback from other stakeholders, the canadian agency for drugs and technologies in health (cadth) issues its recommendation: “do not reimburse.” cadth is an independent agency that offers research and policy analysis suggestions to health-care decision makers, and federal health policy often follows their recommendations. the agency was recommending that vraylar not be funded publicly, the reason being that cadth’s expert panel had determined that “there was not enough evidence to show that vraylar filled a treatment gap,” the agency wrote in their report.

“based on evidence from five clinical trials, treatment with vraylar improved symptoms of schizophrenia or delayed relapse compared with placebo,” the agency wrote in its ruling . “vraylar also improved negative symptoms of schizophrenia compared with risperidone. although these results were statistically significant, it is not clear whether any of these effects are clinically important.”

“research finds that response to antipsychotic medications is particularly heterogeneous, and tolerability and experience of side effects varies from person to person,” the charity said in a statement to healthing. “ for these reasons, we urge cadth to reconsider its decision and encourage it to recommend vraylar, and medications like vraylar, for public reimbursement.”

‘setting people up to fail’

for tinman, the ruling “doesn’t make logical sense.” now working full-time in peer support and social events for peer connections manitoba (formerly the manitoba schizophrenia society), she’s regularly in contact with other people who have been diagnosed with the illness.

she works full-time, something that’s out of reach for many people living with schizophrenia: only about 15 per cent of adults with schizophrenia in canada can find jobs, according to research from canada’s public policy forum in 2014.

there’s a cruel irony there, because steady routine is a huge part of recovery for many people. in her book “the center cannot hold: my journey through madness,” elyn r. saks, a university professor with lived experience of schizophrenia, wrote that her “ very survival hinged on structure and predictability.”

her writing is quoted in another 2014 canadian study on recovery from severe mental illness. “ work is my solace,” saks wrote. “when i am away from it i lose all my bearings… i need to be in my office seven days a week.”

will vraylar ever be funded?

the ssc is still advocating for vraylar to be more accessible, summerville says, meeting with provincial health ministries and with groups that manage drug plans for different provinces and territories. and they’ve have some success: earlier this month, quebec’s institut national d’excellence en santé et en services sociaux, the group that advises quebec’s health minister, recommended that vraylar be covered in the province, under the condition that patients hadn’t had success with other options and that they would benefit from a “reduced financial burden.” (quebec is the only province or territory that doesn’t rely on cadth’s recommendations.)