ARPA-H is our moonshot for schizophrenia: The Biden Administration should recognize this opportunity to find the next breakthrough in schizophrenia research

By Lisa Dailey

Speaking last year at the National Education Association Representative Assembly, President Biden said that he can define America with one word: “possibilities.” 

He’s right. President Kennedy’s 1961 challenge to claim a pioneering role in space travel led to Neil Armstrong’s first steps on the Moon eight years later. When Americans find the will to do something, we find a way.

President Biden’s affinity for bold, cutting-edge initiatives was on display when he proposed the Advanced Research Projects Agency for Health (ARPA-H), a new organization that will sit in the National Institutes of Health (NIH) and which has the potential to give rise to a once-in-a-generation leap forward in research for conditions consistently left behind in funds and focus.

Now that the House has just passed a bill to establish ARPA-H as an independent health agency, I hope that President Biden’s administration recognizes the possibilities ARPA-H offers for finding breakthrough advancements, or even a cure, for schizophrenia.This chronic and severe neurological brain disorder affects 1.1% of adults, some 2.8 million Americans. It is one of the most disabling diseases affecting humankind. 

For far too long, millions of American families affected by schizophrenia – just like mine – have waited for advancements in treatment and cures for their loved ones. It is time for a moonshot for schizophrenia treatment. We are calling on the administration to add schizophrenia to the list of diseases ARPA-H seeks to tackle.

Schizophrenia strikes people young and persists over a lifetime, with onset usually between 18 and 25 years. It robs people of opportunity and potential, transforms loved ones into untrained and unpaid caregivers, and shortens the lives of those diagnosed by up to 25 years. 

The first antipsychotic medication able to break the hold of schizophrenia was discovered in the early 1950s. With no prior effective treatments, this breakthrough gave the hope of recovery to many languishing in untreated psychosis. Yet shockingly few advancements or new medications for schizophrenia have followed, despite up to 40% of those with schizophrenia not responding, or only partially responding, to available antipsychotic medications. 

Our existing treatments, lifesaving as they are, still can have serious side effects. Clozapine was approved more than 30 years ago, and while it remains the gold-standard medication for schizophrenia, it is also underused. Unpleasant side effects are a leading reason why a person may discontinue antipsychotic medication. We routinely ask those with schizophrenia to sacrifice physical health for mental health. I, for one, am ready for a future where nobody needs to make that choice.

Schizophrenia cost the American economy an estimated $155 billion in 2013. The majority of the economic impact stems from the lost work productivity for individuals and their caregivers: $117 billion. Unemployment is the single biggest contributor to cost impact at $59 billion, or 37.9% of the total cost.

Untreated and undertreated individuals are more likely to experience homelessness and constitute the majority of those with mental illness in county jails and state prisons. Individuals with schizophrenia also comprise a disproportionate share of those with mental illness who are killed by police, according to our research.

Compared to other conditions, the early age of onset means that schizophrenia causes immense disruption to individuals and families that lasts over decades. 

In recent years, major pharmaceutical companies have reduced efforts to develop new drugs for schizophrenia. A major reason for this has been the failure of genetic and other molecular biology research to identify new targets for drug development. ARPA-H can fill in this gap.

A breakthrough schizophrenia treatment means transformational change for millions of Americans and their families. Schizophrenia patients, if given the benefit of a cure, could potentially resume contributing to the economic life of the country for decades, while enabling their family caregivers to rejoin the labor force as well. And most importantly, it halts human suffering and frees people from the cyclical prison of psychosis. 

When it comes to finding ways to combat the coronavirus, as one reporter observed, phrases like “risk aversion” and “incremental change” have been jettisoned from our collective vocabulary. Boldness and speed have become our new bywords.

What could be bolder than a moonshot for schizophrenia? 

Let’s finally let go of the tyranny of low expectations for our loved ones and ourselves. It’s within our power to rid our country and the world of the scourge of schizophrenia if we set our minds to the task.

Our national failure to provide adequate treatment to those with schizophrenia is one of the most important and long-existing health care challenges in the United States, extracting enormous tolls both economically and socially. 

We must not accept this status quo as an inevitability: The next breakthrough in schizophrenia research is waiting for us to decide that we must find it. This is our chance.  

Lisa Dailey is the executive director of Treatment Advocacy Center.