Charitable assistance for mental health treatment could save lives

By Dan Klein, PAN Foundation President and CEO, and Gordon Lavigne, Schizophrenia & Psychosis Action Alliance CEO

Of the 51.5 million adults in the U.S. who experienced mental illness in 2019, more than half did not receive treatment, according to the National Alliance on Mental Health. For people living with chronic, rare, and serious illnesses, every day without treatment can mean the difference between life and death. This is also true for many mental health conditions, like schizophrenia, where lack of treatment leads to severe negative health outcomes, including shortened life expectancy by an average of 15 years.  

Both the PAN Foundation and Schizophrenia & Psychosis Action Alliance (S&PAA) recognize that more support is needed for people living with schizophrenia, and all mental health diagnoses. Too often, if an individual can’t afford treatment—including medication, therapy, and inpatient treatment—they have nowhere to turn for help with the out-of-pocket costs, making treatment adherence a challenge for many.

In addition, mental health conditions are not discussed or treated the same way as other diseases, such as cancer or Parkinson’s. While the longstanding stigma of mental health appears to be decreasing, more must be done to ensure equitable access to services and treatment for all.

Out-of-pocket medication costs lower treatment adherence 

People with schizophrenia typically require lifelong treatment. Early treatment may help improve long-term prognosis and get symptoms under control before more serious complications develop. Across multiple studies, inpatient costs and prescription drug costs comprised the largest share of direct healthcare costs for schizophrenia patients. Approximately 50 percent of patients with the diagnosis do not take their prescribed medications as directed.

Both Medicare and commercially insured individuals may face high out-of-pocket costs for their prescription medications to treat schizophrenia. In Medicare specifically, there is no cap on what a patient pays out-of-pocket each year for their medications to treat schizophrenia.

Further, one study found that better medication adherence could yield annual net savings of $3.3 billion for the Medicaid program and certainly lead to better health outcomes.

Lack of coverage for treatment from mental health professionals 

Medicare places certain limits on the types of professionals that are eligible for reimbursement and the circumstances under which covered professionals must practice to be eligible for reimbursement.

For example, Medicare does not reimburse licensed professional counselors or peer counselors, and there are stipulations on coverage for psychologists. These limitations have led to a shortage of mental health professionals that people with schizophrenia or other diagnoses can see.

Because many people cannot afford the ongoing treatment of seeing private mental health practitioners, it is essential that Congress reform the Medicare program to increase access to mental healthcare and encourage better health outcomes.

Joining forces to support access to treatment 

To fill the gap and provide critical support for people living with schizophrenia, the PAN Foundation has expanded financial assistance and partnered with Schizophrenia & Psychosis Action Alliance to offer support services for people on Medicare seeking treatment for schizophrenia.

Through the PAN Foundation’s Schizophrenia Assistance Program, eligible patients with Medicare insurance can get help paying for their schizophrenia medications for 12 months. The Schizophrenia & Psychosis Action Alliance offers these patients a wide variety of support services, including an information helpline, peer support groups, and educational resources about treating and managing schizophrenia.  

Commitment to advocacy and policy solutions 

Both of our organizations are also committed to working toward policy solutions that will increase treatment access and affordability for people with mental health diagnoses. Expanding the charitable assistance available and support resources to people living with schizophrenia is just one step: there must also be better coverage for Medicare beneficiaries. Policies like a cap on annual out-of-pocket costs and smoothing them evenly throughout the year will reduce the financial burden on patients. Today, more help is available for people with schizophrenia. Tomorrow, we must continue the work.

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About the Schizophrenia & Psychosis Action Alliance 

The Schizophrenia & Psychosis Action Alliance is a global impact organization moving individuals, families, and policies forward to improve and save lives by changing the treatment paradigm for all persons affected by schizophrenia-related brain diseases which involve psychosis. Every day without treatment can mean the difference between life and death.

We envision a day when the reclassification of schizophrenia as a neurological designation allows every person living with a schizophrenia-related brain disease to receive respect, appropriate treatment, and an opportunity to live a meaningful and satisfying life in a compassionate community free of discrimination. We stand for hope and recovery through promoting peer-based support programs, helping accelerate scientific knowledge, identifying effective treatments, and promoting effective public policies. To learn more, visit sczaction.org.

Featured resource

Schizophrenia & Psychosis Action Alliance offers a free information helpline with specially trained team members who can provide personalized information and resources to people with schizophrenia-related illnesses and their families. Team members are available Monday through Friday between 9 a.m. and 5 p.m. in all time zones.