Tackling Unmet Medical Need in Serious Mental Illness

People living with serious mental illness (SMI) experience significant challenges when seeking treatment for their complex conditions. From difficulties in getting an accurate diagnosis to finding adequate mental healthcare, the very real struggle of navigating an SMI impacts not only the person living with the condition and their loved ones, but also the healthcare system generally.¹ The question is – can we better support people living with serious mental illness and their care communities? First, we’ll need to tackle some hurdles.

Serious Mental Illnesses are Poorly Understood

The journey for people living with an SMI is difficult and winding, and one reason is that diseases like schizophrenia and bipolar disorder carry with them stigma² not often faced by people with other serious, chronic conditions. If your loved one is diagnosed with cancer or a genetic disorder, neighbors may come by to deliver a casserole. When your loved one is diagnosed with schizophrenia, neighbors may shy away because they feel uncomfortable, afraid or simply don’t understand the disease.

This stigma certainly has an impact on when and whether patients seek diagnosis and treatment of their condition. It also impacts the emphasis the scientific community has placed on addressing these diseases.

If the average person struggles to understand these conditions, we can hardly blame them. Even on a scientific level, our basic understanding of these complex diseases lags in years, if not decades, behind that of other diseases, such as cancer or cardiovascular disease, where understanding has led to the development of clear treatment algorithms and an ability to deliver personalized care to patients.^3,4

This lag is driven in part by the much smaller investment into research for psychiatric conditions compared to other serious illnesses.⁵ While the National Institutes of Health spend roughly $41.7 billion on research annually, less than 9% of that funding is earmarked for mental health.^6,7

Contrast this with the significant burdens that these diseases place on patients, families and the healthcare system. For instance, bipolar I disorder (BD-I) is estimated to affect approximately 1% of the U.S. population.⁸  The economic burden of BD-I—which includes direct medical costs, direct non-medical costs (such as BD-I-related substance use disorder, criminal justice involvement for those who commit or are victims of crime, prevention/research) and indirect costs (such as loss of work productivity or premature mortality) has been estimated at $219 billion each year in the U.S.⁹

Unfortunately, the comparatively low level of investment in research and development means that treatments for SMIs like BD-I have remained largely the same for decades. In 2020, the U.S. Food and Drug Administration (FDA) approved 53 novel therapies—including 18 for oncology and six each for neurology and infectious diseases—and none for psychiatric conditions.¹⁰ Improving this statistic will require research, development and attention from many across science, medicine and drug development. 

The Long Delay to Diagnosis and Treatment

One obstacle to delivering the best care to people living with serious mental illnesses is the length of time it takes for patients to be properly diagnosed. For instance, while the median age-of-onset of bipolar disorder symptoms is 33, patients are often misdiagnosed early in their disease when they seek help from a healthcare provider.^11,12 It can take 3.5 years from the first major mood episode to get a proper diagnosis, and for some it can take as long as 10–15 years.^13,14

Even once a patient is diagnosed, they may face a long journey to find a treatment that works for them.¹⁵ This is due, in part, to the lack of an established treatment paradigm for most mental health conditions. In addition, patients and providers often face difficult choices between treatment efficacy and tolerability. Optimizing individual treatment for SMIs is necessary to adequately treat symptoms while avoiding potential negative side effects.¹⁶ Additionally, all therapies considered for a particular patient should depend on the patient’s needs, goals, preferences regarding the impact on symptoms, and quality of life.¹⁷

An Important Step: Listening to Real Life Experiences

While changes to research budgets and advances in scientific discovery take years, one improvement we can make in the short-term is to gather real-world insights from the experts on SMI—those living with these conditions and their healthcare providers. A Harris Poll survey of 305 U.S. adults living with BD-I¹⁸ and 255 U.S. psychiatrists who treat BD-I¹⁹—sponsored by Alkermes® and in collaboration with the Depression and Bipolar Support Alliance (DBSA)—aimed to gain insights into the ways in which the disorder and its treatment can impact quality of life.

According to the survey, more than half of surveyed individuals (54%) with BD-I reported trying more than five medications, while nearly one in five (17%) tried more than 10.¹⁸

The survey also highlighted the reality that treatment for SMIs can come with burdensome side effects. The vast majority of survey respondents, 93%, said they experienced medication side effects, and 95% of those respondents reported that those side effects had a negative impact on their daily lives. Of those who experienced bothersome medication side effects, the three most reported were weight gain (52%), anxiety (52%), and drowsiness and sleepiness (49%).¹⁸ This can present a difficult choice for patients, families and healthcare providers – between medicines that effectively manage symptoms and tolerability of treatment. In fact, nearly all HCPs responding to the Harris Poll survey (97%) said that they wished there were medication options that relieved BD-I symptoms with fewer side effects.¹⁹

The survey does reveal a hopeful finding. People living with BD-I are persistent in their efforts to find the right treatment. More than two-thirds, 75%, of participants, reported being well-managed on current medications.¹⁸ We should embrace the goal of increasing the percentage of patients who self-report that they feel well-managed on their medicine, while decreasing the amount of time it takes to get there. Meaningful partnerships between healthcare providers and patients are key. One example is simply shifting to ask, “Are you doing as well as you’d like to be?”, instead of asking, “Are you doing OK?”

A Better Future

There are many reasons why people living with serious mental illness struggle to get the care they deserve – from stigma and research funding challenges to the lack of a defined treatment pathway for these diseases, and limited treatment options. The result is that people living with these diseases, their loved ones, and healthcare providers have had to adopt a stance of “good enough” – whether that means that patients must live with some remaining symptoms or with some bothersome side effects. Increasing our understanding of these diseases and the people who live with them is an important first step. But there remains significant unmet need that can only be resolved when we replace “good enough” care with excellent care.

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18. Alkermes Data on file.
19. Alkermes Data on file.

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