Schizophrenia: beyond the stigma
There is a widespread stigma associated towards people living with schizophrenia – a complex mental health condition with a wide range of symptoms, for which medicines often do not yet exist. The condition affects about one in 300 people worldwide. Boehringer Ingelheim is committed to helping people with schizophrenia receive the understanding, support and medical care they deserve.
Schizophrenia is usually diagnosed in late adolescence or early adulthood, typically only after its most alarming symptoms present themselves. But the serious stigma and common misperceptions attached to the condition often prevent people from even seeking a diagnosis.
Péter didn’t face schizophrenia until he was 43, when he was well into a successful corporate career. Upon receiving his diagnosis, he feared his life would quickly fall apart – a common reaction among people living with schizophrenia.
Péter and Matt share their personal stories and what it’s like to live with schizophrenia
“At that very moment,” Péter recalls, “I realized this is something I do not want, and it will change everything. I will lose my friends. I will lose my family. I will lose my job …. I will lose the perception of being normal in my community – nobody wants to talk about mental illness. It is not a fashionable topic.”
He soon learned that schizophrenia not only affects personal relationships but also can lead to discrimination that limits education, housing, employment opportunities … even access to health care. People with schizophrenia are two to three times more likely than the general population to die early, often due to untreated physical illnesses, such as cardiovascular, metabolic and infectious diseases.
“If you visit a physician and mention you live with schizophrenia and then ask for help with a physical pain, the doctor will question whether the pain is real or not. We can’t have the life we deserve if what we say is not taken seriously,” says Péter.
“We can’t have the life we deserve if what we say is not taken seriously.”
Péter
What’s missing in our understanding of schizophrenia?
When people consider schizophrenia, they often think about hallucinations, like hearing voices or seeing things that aren’t there. These types of symptoms are known as ‘positive symptoms’. Positive symptoms are not positive in the literal meaning of the word, as in ‘nice’ or ‘good’ – they describe an excess or exaggeration of usual human experiences which significantly impair the way reality is perceived.
Importantly, positive symptoms only represent one class of the symptoms people living with schizophrenia can experience.1 Beyond positive symptoms, there are two additional domains of symptoms: cognitive and ‘negative’,2 which can appear before the onset of the positive symptoms. Cognitive symptoms include difficulties with memory, attention, problem-solving and reasoning, as well as with social situations. Negative symptoms – which lie at the core of schizophrenia and describe reduced capacity to engage in human experiences – diminish people’s interest in daily life. People experiencing these symptoms present themselves as having a decline in motivation, the ability to experience joy and a loss of independence. The net result is often social isolation.
Despite having a significant impact on people living with schizophrenia, treatment options to address cognitive and negative symptoms remain limited.2
Boehringer Ingelheim has made a generational commitment to address serious mental health conditions. The company is investigating multi-modal solutions to improve the lives of people living with schizophrenia by looking beyond just treating the acute episodes of positive symptoms, which are the most easily identified and have approved treatments.
Experiencing the full range of symptoms
Matt, who lives in the United States, was first diagnosed with schizophrenia in his early 20s. He was experiencing negative symptoms in the form of depression and a sense of isolation.
“I was sitting in an office with a psychiatrist, and she said, ‘Okay, this sounds like you have schizophrenia.’ I heard that and I was like, no, that can’t be…. Even my parents were in disbelief, and we thought maybe it was just kind of an isolated episode,” Matt says. “The initial reaction was shock and disbelief.”
His reaction was not unusual. The widely held prejudices around schizophrenia discouraged him from seeking further help. Two years later, he began to experience positive symptoms. His growing isolation had led to drug use that triggered a severe psychotic episode, and he was hospitalized.
“The initial reaction was shock and disbelief.”
Matt
“I was not really going out too much and was using marijuana, which contributed to the onset of psychotic symptoms, one of which was a feeling of grandiosity,” says Matt. He had started to believe that he possessed superhuman powers and had persecutory delusions that people were trying to harm him.
Fortunately, since his hospitalization, Matt has been on the path to recovery. One thing he still struggles with today are negative symptoms, such as lack of motivation and difficulties in completing goal-oriented tasks . Sticking to his schedule, setting reminders on his phone, and calling his best friend serve as tools to provide a sense of reinforcement towards his goals.
Living well with schizophrenia is possible
“When I was first diagnosed, it felt like a death sentence,” Matt says. “Then I was able to educate myself and learned that people can recover. I truly believe that, with the right support, the right medical intervention, the right peer support and education, people can live on to pursue their interests and maybe even find new interests and new goals, new things that inspire them.”
“If we teach people around the world how to live with it, they can have normal and fruitful lives in the future.”
Péter
Péter went on to join a foundation and international organization that helps people with schizophrenia. He has seen that there are wide gaps in treatment from country to country, and he encourages people to seek proper support to thrive.
At the foundation, “we teach them to take back their original lives, to have children, to see that there is life after schizophrenia,” Péter says. “If we teach people around the world how to live with it, they can have normal and fruitful lives in the future.”
Select a domain to learn more about the often overlooked symptom domains of schizophrenia
Looking forward to the future of mental health
An interview with Christoph von der Goltz, Head of Medicine for Mental Health at Boehringer Ingelheim
1. Why is Boehringer Ingelheim investing in mental health?
Nearly 1 billion people worldwide live with a mental health condition – in fact, one in two people experience a mental health condition in their lifetime.11 Despite the still extremely high stigma, conversations about mental health have certainly increased since the COVID-19 pandemic and we know that poor mental health affects many people in varied and significant ways.
What often remains overlooked, however, is the high unmet need in serious mental illnesses, for example in schizophrenia and major depressive disorder. The pervasive stigma associated with those conditions can have an impact on many levels – from misconceptions about behaviors and personalities to the level of health care people get.
We also find that these areas have been neglected in terms of scientific innovations, meaning there is also a need for much more research into treatments to better support people living with serious mental illnesses. That’s why we’ve made a generational commitment to mental health: Our mission is to champion every mind for generations, and through our own research and collaborations with like-minded stakeholders, we are working to transform the mental health landscape to enable people to thrive.
2. What is different about your approach to mental health?
Our ambition is to provide the right treatment to the right patient at the right time. It may sound simplistic, but currently, in psychiatric conditions, treatment decisions are based on the diagnosis a person is given, which means applying treatment based on the whole condition that a person was diagnosed with, and not necessarily on the symptoms which are most burdensome for people in their everyday lives.
We know that current diagnostic criteria represent broad syndromes with a poor link to the underlying biology, and which do not reflect the range, frequency and severity of symptoms which individual people may experience over time.
What we’re focused on is a more targeted approach where we link the underlying biology to burdensome symptoms that remain unaddressed by current treatments. We’re also championing a holistic approach to mental health conditions: Combining medicines, behavioral therapies, community support and prescription digital therapeutics to help people living with serious mental illnesses thrive.
“We’re also championing a holistic approach to mental health conditions: combining medicines, behavioral therapies, community support and prescription digital therapeutics to help people living with serious mental illnesses thrive.”
Christoph von der Goltz, Head of Medicine for Mental Health at Boehringer Ingelheim
3. What treatments are you working on in mental health?
People living with serious mental health conditions, such as schizophrenia or major depressive disorder, often experience persistent, debilitating symptoms that can severely impact their quality of life and overall wellbeing.
For many of those symptoms no or very limited solutions exist to date, despite the high burden they place on people’s lives.
And this is where we innovate. Let me give you two examples of what we are working on in schizophrenia. Iclepertin is a new potential treatment that aims to ease the burden of cognitive impairment associated with schizophrenia such as remembering things or memory lapses, trouble with problem solving or a declining ability to focus. These types of symptoms can also be present before the onset of acute symptoms like hallucinations or delusions and can have a huge impact on people’s social and professional lives. Iclepertin is in late-stage phase III clinical trials, and we are expecting to make this treatment available for people living with schizophrenia in the next two years.
Another great example from our late-stage pipeline is the novel prescription digital therapeutic (PDT) called CT-155 we are developing together with our partner Click Therapeutics. PDTs are software-based therapies that deliver easy-to-use, evidence-based treatment through a patient’s digital device. This therapy provides psychosocial intervention techniques that might help people experiencing so-called ‘negative’ symptoms of schizophrenia. They can present as social withdrawal, lack of pleasure or a decreased motivation and drive to engage in hobbies. We are excited about the potential of PDTs because they offer a new modality to support, enhance, and improve treatment in areas that are challenging to treat with existing methods and therapeutics.
Beyond schizophrenia, we are leading broad investigational efforts in many areas of mental health, like major depressive disorder, where significant unmet needs remain. We work closely with partners who share our ambitions because we cannot transform mental health care alone. Our commitment in these areas is long-term; we’re continuing to champion mental health today and for future generations to come.
