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

vraylar is effective at treating the negative symptoms of schizophrenia, but it's inaccessible to most of the people who need it.

why is the schizophrenia drug vraylar not covered by medicare?
research shows that schizophrenia is both a highly stigmatized and extremely misunderstood illness. getty
katrina tinman has a degree in journalism and political science. she’s a dual citizen of canada and the u.s., and has lived on both sides of the border. for over a decade, she had a successful career as a marketing director. she also has schizoaffective disorder, which combines the symptoms of both schizophrenia and a mood disorder — in her case, bipolar disorder.
at her sickest, in the early 2010s, she truly thought the world would end in 2012. “i believed i was queen of the planet, and i had made myself the badge to prove it,” tinman says, her voice resounding and clear over the phone from her home in winnipeg. “i believed i was the reincarnation of christ in female form.”
in her mind, she had converted the homeless shelter where she was living to “a gathering space for the reconstruction of society.”
after she was officially diagnosed with schizoaffective disorder around 2013, she learned that many people with similar illnesses have those same kinds of delusions — that they’re divine beings, or that god is talking to them.
“that actually brought me out of my shell, once i made that connection point, in terms of realizing that that’s something that other people had experienced,” she says. “it made it a bit more ok.”

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she was prescribed an atypical antipsychotic called risperidone. and while it helped with some of the delusions, it also came with severe side effects: lethargy, low sex drive, weight gain, and hormonal abnormalities that meant she stopped getting her period. she felt unsociable, dispassionate, deeply disconnected from her own life. she felt “dead inside.”
 katrina tinman was officially diagnosed with schizoaffective disorder around 2013. supplied
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.

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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

while misconceptions about schizophrenia has contributed to stigma around the illness, it’s also had an impact on the way patients are treated, and even if they are treated. and while treating “positive” symptoms like hallucinations may be seen as more significant than treating “negative” symptoms like avolition, those living with the illness say both are equally important.

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.”

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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.

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“recovery means living beyond the limitations of a mental illness, with a sense of purpose and hope and meaning and social inclusion, and reintegration into society,” summerville says. “but if the negative symptoms are still paramount… they hinder that recovery and reintegration.”
 chris summerville, the ceo of the schizophrenia society of canada (ssc). supplied
chris summerville, the ceo of the schizophrenia society of canada (ssc). supplied

vraylar enters the market

in the mid-2010s, hungarian pharmaceutical company gedeon richter developed the medication cariprazine, now sold under the brand name vraylar. it was first approved to treat schizophrenia in the u.s. in 2015. in canada and the u.s., the drug is manufactured by allergan, which has since been acquired by abbvie.
“the important thing here is that [vraylar] was developed to target negative symptoms,” summerville says. “vraylar, we feel, meets an expressed, unmet need for people living with schizophrenia, so as to improve that psychosocial functioning.”

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.

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“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.”

but tinman says that dealing with schizophrenia’s negative symptoms — something many antipsychotics don’t help with — is crucial to people experiencing psychosis. she had a relapse earlier this year, and found the negative symptoms hindered her life in a significant way.

“i can’t, when i’m sick, even string two sentences together,” she says. “that’s cognitive and negative symptoms coming together.”

and this isn’t unique to her. in a survey conducted of people with lived experience of early psychosis and schizophrenia by the ssc (and abbvie, the company that manufactures and distributes vraylar) 94 per cent of respondents said they had experienced at least one negative symptom.

health agencies “seem to want to cover the positives symptoms — the hallucinations, the delusions,” says tinman. “but it’s those negative symptoms and those cognitive functions that help us function in society.”

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the cadth decision was a major blow to the ssc.
“it doesn’t make sense because there’s clinical input,” summerville says. “patient groups give their input, clinicians say that it’s statistically significant, cadth recognizes that. we’ve got a situation in which a person living with early psychosis or schizophrenia can’t even have this option of this medication. there’s something wrong with that.”
the drug’s manufacturer, too, is bewildered by the agency’s decision.
“abbvie is disappointed with cadth’s ‘do not reimburse’ recommendation for vraylar given the need for more medication options for this vulnerable group who are highly dependent on the public health-care system,” the company said in a statement provided to healthing.
the company also pointed out that while not covered through the public system, several private drug plans have added vraylar to their coverage. “to date, the majority of people covered by private drug plans can access vraylar,” the statement said.
while the drug wouldn’t necessarily work for every patient, the institute for advancements in mental health agreed that it should be an accessible option for people who need it.

“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.”

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‘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.

“it’s setting people up to fail, and be on the system, through social determinants of health,” she says.
after her bad experience with the side effects of risperidone, tinman switched to abilify with her psychiatrist’s help. on the new drug, her hormones regulated, her energy levels came back up, and she no longer felt dead inside. it’s “wonderful to be human again,” she says.
abilify is working for her. like many mental illnesses, schizophrenia tends to present differently in different people, and what works for one person may not work for someone else with the same diagnosis. but even if it wasn’t, vraylar wouldn’t be an option, simply because of the cost.
taken orally, abilify costs about $3.80 a day, or more than $1,300 annually. if taken by injection that yearly cost can rise to more than $6,000. but, crucially, abilify is covered by medicare. vraylar, on the other hand, costs about $4.90 a day, or $1788.50 per year. (prices are determined by the patented medicine price review board, a federal agency that works with public and private drug plans “to ensure that prices are not excessive and that they reflect the therapeutic value of the drug.”)

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“hearing that cadth is saying not to publicly fund it, that probably rules it out for me, especially with current inflation,” says tinman. “i gotta eat.”

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.”

affordable drugs are even more important for people who take several medications, which often happens for people living with schizophrenia, says summerville. sometimes they need a combination of meds to treat their symptoms, or they have co-morbidities. occasionally, another medication is needed to help manage the primary medication’s side effects.

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“in the case of psychosis, a person can be taking an antipsychotic and also an antidepressant medication to deal with side effects,” he says. “these medications are not cheap.”

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.)

it’s one important step towards improving the lives of those who live with schizophrenia, but there’s still a ways to go.
“i don’t advocate for particular pharmaceutical company, i advocate for people whose lives have been nearly destroyed by schizophrenia and who are looking for the best possible medical intervention. so when you have a drug like vraylar, and it’s unlike other medications and it was developed to target negative symptoms…” he trails off.

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“people with medical health challenges, [they] don’t use all this clinical, technical language. they just say: i just want my life back.”
 
maija kappler is a reporter and editor at healthing. you can reach her at mkappler@postmedia.com
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