Hosted by The American Brain Coalition and

championed by Sage Therapeutics and Biogen.

A call to action for the mental health advocacy community.

A call to action for the mental health advocacy community.

A call to action for the mental health advocacy community.

A call to action for the mental health advocacy community.

A call to action for the mental health advocacy community.

A call to action for the mental health advocacy community.

A call to action for the mental health advocacy community.

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I remember the moment when I knew I was in trouble and could no longer wait to get help. I was driving on I-95 to work, trying to figure out how fast I could be going to crash into the median and end it all. I knew then that I needed help, and fast. I started calling doctors in my network and remember clearly a conversation I had with the receptionist who told me the doctor could see me in nine months. I remember telling her, I won’t be alive in nine months. I will be lucky if I’ll make it 48 hours.

— Rep. Hillary Cassel,

Member, Florida House of Representatives

The Mental Health Innovation Summit examined how the COVID-19 pandemic and its ongoing impacts have uncovered, and exacerbated, the inequities and shortcomings of mental health care in the United States.

These discussions highlighted the belief that the ecosystems that support access to quality care and medicines remain antiquated, and emphasized that our systems must keep pace with innovation because mental health is health.

The Mental Health Innovation Summit examined how the COVID-19 pandemic and its ongoing impacts have uncovered, and exacerbated, the inequities and shortcomings of mental health care in the United States.

These discussions highlighted the belief that the ecosystems that support access to quality care and medicines remain antiquated, and emphasized that our systems must keep pace with innovation because mental health is health.

The Mental Health Innovation Summit examined how the COVID-19 pandemic and its ongoing impacts have uncovered, and exacerbated, the inequities and shortcomings of mental health care in the United States.

These discussions highlighted the belief that the ecosystems that support access to quality care and medicines remain antiquated, and emphasized that our systems must keep pace with innovation because mental health is health.

The Mental Health Innovation Summit examined how the COVID-19 pandemic and its ongoing impacts have uncovered, and exacerbated, the inequities and shortcomings of mental health care in the United States.

These discussions highlighted the belief that the ecosystems that support access to quality care and medicines remain antiquated, and emphasized that our systems must keep pace with innovation because mental health is health.

The Mental Health Innovation Summit examined how the COVID-19 pandemic and its ongoing impacts have uncovered, and exacerbated, the inequities and shortcomings of mental health care in the United States.

These discussions highlighted the belief that the ecosystems that support access to quality care and medicines remain antiquated, and emphasized that our systems must keep pace with innovation because mental health is health.

The Mental Health Innovation Summit examined how the COVID-19 pandemic and its ongoing impacts have uncovered, and exacerbated, the inequities and shortcomings of mental health care in the United States.


These discussions highlighted the belief that the ecosystems that support access to quality care and medicines remain antiquated, and emphasized that our systems must keep pace with innovation because mental health is health.

The Mental Health Innovation Summit examined how the COVID-19 pandemic and its ongoing impacts have uncovered, and exacerbated, the inequities and shortcomings of mental health care in the United States.

These discussions highlighted the belief that the ecosystems that support access to quality care and medicines remain antiquated, and emphasized that our systems must keep pace with innovation because mental health is health.

And patient advocates are leading the way.

On February 27, 2023, the American Brain Coalition partnered with Sage and Biogen to launch the Mental Health Innovation Summit. The Summit mobilized 53 patient advocates from 41 organizations across the health landscape to innovate on solutions that can address critical gaps in mental health support, systems and treatment.


What resulted were actionable ideas designed to address long-entrenched problems, like how to broaden access to innovations and how to shift the mental health paradigm to demonstrate once and for all that mental health is health.

Advocates agreed: we can’t wait for action to improve mental health care; the community must act now.

Patients and patient advocates are positioned to usher in a new era in mental health. Six core themes emerged from the Summit that chart the priority areas for unified action toward meaningful change:

Patients and patient advocates are positioned to usher in a new era in mental health. Six core themes emerged from the Summit that chart the priority areas for unified action toward meaningful change:








Patients and patient advocates are positioned to usher in a new era in mental health. Six core themes emerged from the Summit that chart the priority areas for unified action toward meaningful change









1

1

1

1 - Illustration created at the Mental Health Innovation Summit, February 27, 2023.

1

Systems Innovation Now

When we think about mental health in our healthcare system, we can find significant, innovative change through high impact points of intervention.


– John MacPhee, CEO, The JED Foundation

1,2

57.8

million

47%

11

years

U.S. adults experienced mental illness in 2021.

of U.S. adults with mental illness received treatment in 2021.

average delay between symptom onset and treatment

57.8

million

U.S. adults experienced

mental illness in 2020.

47%

of U.S. adults with mental illness received treatment in 2021.

11

years

average delay between symptom onset and treatment

57.8

million

U.S. adults experienced

mental illness in 2020.

47%

of U.S. adults with mental illness received treatment in 2021.

11

years

average delay between symptom onset and treatment

According to the 2023 State of Mental Health in America report³, almost a third (28.2%) of all adults with a mental illness reported that they were not able to receive the treatment they needed, for reasons including:

42%

Lack of knowledge of where to receive services

27%

Lack of time to pursue treatment

19%

Cost barriers

17%

Lack of health insurance coverage for mental health treatment

42%

27%

19%

17%

Cost barriers

Lack of knowledge of where to receive services

Lack of time to pursue treatment

Lack of health insurance coverage for mental health treatment

In the U.S., there are 350 individuals for every one mental health provider. As of June 2022, over 152 million people lived in a mental health workforce shortage area³.

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What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from
patient advocates

Advocates highlighted that due to systems in desperate need of investment and modernization, individuals with mental health challenges can face several barriers to accessing needed mental health treatment:

Advocates highlighted that due to systems in desperate need of investment and modernization, individuals with mental health challenges can face several barriers to accessing needed mental health treatment:

Advocates highlighted that due to systems in desperate need of investment and modernization, individuals with mental health challenges can face several barriers to accessing needed mental health treatment:

Advocates highlighted that due to systems in desperate need of investment and modernization, individuals with mental health challenges can face several barriers to accessing needed mental health treatment:

Behavioral Health Provider Shortage

Behavioral Health Provider Shortage

Behavioral Health Provider Shortage

Inadequate Screening for Mental Health

Inadequate Screening for Mental Health

Inadequate Screening for Mental Health

Lack of Access to Innovative Therapies

Lack of Access to Innovative Therapies

Lack of Access to Innovative Therapies

Solutions to these challenges exist, but they require awareness and investment across sectors.

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1 - U.S. Substance Abuse and Mental Health Services Administration. Key Substance Use and Mental Health Indicators in the United States: Results from the 2021 National Survey on Drug Use and Health (PEP22-07-01-005)

2 - Wang PS, et al. Delays in Initial Treatment Contact after First Onset of a Mental Disorder. Health Services Research. 2004 Feb; 39(2); 393 - 416.

3 - Reinert, M, Fritze, D. & Nguyen, T. The State of Mental Health in America 2023. Mental Health America, October 2022.

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2

Meeting the need at greater speed – reforming “fail first” policies

We have mental health parity in law, but not in fact.


– Dr. Mark Rasenick, Vice Chair, American Brain Coalition Board of Directors


We have mental health parity in law, but not in fact.

– Dr. Mark Rasenick, Vice Chair, American Brain Coalition Board of Directors

What is “fail first”?

According to the National Alliance on Mental Illness (NAMI), sometimes health insurers may request or require patients to demonstrate unsuccessful treatment on one or more insurer-preferred medications before they receive coverage for the medication that their physician recommends. This practice is known as step therapy or “fail first,” meaning that an individual must try and “fail” on one or more medications before they can try another that may have been recommended by their health care provider².

Why advocates feel “fail first” is a problem in mental health care

Insights from NAMI indicate that, for many people with mental illness, medication is an essential part of their treatment and can be a valuable tool in overall well-being. The use of mental health medications is a decision made between an individual and their health care provider based on their symptoms, treatment history and consideration of side effects. Mental health medications affect people — even those with the same diagnosis — in different ways, including varying levels of effectiveness and different side effects².


When a health insurer requires a “fail first” protocol, it can pose serious risks to a person taking mental health medication because it can result in some patients not being able to access the treatments they need in a timely manner. Delayed access to effective mental health treatment can endanger the well-being of patients³.

A study of more than 1,600 Medicaid mental health patients

across 10 states(*3) found that:

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4.7x

29.4%

38.9%

Step therapy and fail-first protocols were associated with 4.7 times greater odds of a medication access or continuity problem

For 29.4% of patients, the physician listed a specific, clinically indicated medication that he or she would have preferred to use but could not because of health plan prescription drug coverage, approval issues, or issues with patient copayments

of insurers used a step therapy protocol ⁴

4.7x

Step therapy and fail-first protocols were associated with 4.7 times greater odds of a medication access or continuity problem

29.4%

For 29.4% of patients, the physician listed a specific, clinically indicated medication that he or she would have preferred to use but could not because of health plan prescription drug coverage, approval issues, or issues with patient copayments

38.9%


of insurers used a

step therapy protocol (*4)

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

Patients may often struggle to get their health insurers to cover a new therapy, even if it may be better suited to their mental health needs. Advocates highlighted that the “fail first” mentality can also be exacerbated by: 

Patients often struggle to get their insurance providers to cover a new therapy, even if it may be better suited for their mental health needs. “Fail first” mentality can also be exacerbated by:

Patients often struggle to get their insurance providers to cover a new therapy, even if it may be better suited for their mental health needs. “Fail first” mentality can also be exacerbated by:

Patients often struggle to get their insurance providers to cover a new therapy, even if it may be better suited for their mental health needs. “Fail first” mentality can also be exacerbated by:

Patients often struggle to get their insurance providers to cover a new therapy, even if it may be better suited for their mental health needs. “Fail first” mentality can also be exacerbated by:

Lack of individualization

Lack of individualization

Lack of individualization

Cost-benefit consideration

Cost-benefit consideration

Cost-benefit consideration

Lack of appropriate knowledge

Lack of appropriate knowledge

Lack of appropriate knowledge

We can reform the "fail first" mentality and ensure patients get the treatment that’s right for them – right away.

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1 - Mental Health Innovation Summit – Live illustration capture (February 27, 2023)

2 - National Alliance on Mental Illness (NAMI) Step Therapy. https://www.nami.org/Advocacy/Policy-Priorities/Improving-Health/Medications-Step-Therapy. Accessed May 15, 2023.

3 - West JC, et al. Medicaid Prescription Drug Policies and Medication Access and Continuity: Findings from Ten States. Psychiatry Online. 2015 Jan; 60(5); 601-610.

4 - Lenahan KL, et al. Variation In Use And Content Of Prescription Drug Step Therapy Protocols, Within And Across Health Plans. Health Affairs. 2021 Nov;40(11):1749-1757

3

Advocates must be equipped to empower patients

I will speak to the power of patient advocacy…that feedback is so instrumental and necessary… I have found that the rubber hits the road when you combine the patient experience with evidence-based data and metrics.


– Jamie Belsito, Founder, Maternal Mental Health Leadership Alliance

Information is Power

Thanks in large part to efforts by patient advocates, the FDA created the Patient-Focused Drug Development (PFDD) Program(*1) to better incorporate the patients’ voice in drug development and evaluation. Although advocates can provide comments during PFDD meetings, advocates at the Summit expressed the need for a greater understanding of how their input informs the decision-making process. Advocates are eager to better understand and shape how regulators consider their insights and perspectives.

Study Up

Study Up

Study Up

Study Up

Study Up

Study Up

Study Up

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from
patient advocates

In breaking down the FDA’s role in making new drugs available to patients, advocates identified three key areas where more information and communication is critical to making progress:

In breaking down the FDA’s role in making new drugs available to patients, advocates identified three key areas where more information and communication is critical to making progress:

In breaking down the FDA’s role in making new drugs available to patients, advocates identified three key areas where more information and communication is critical to making progress:

In breaking down the FDA’s role in making new drugs available to patients, advocates identified three key areas where more information and communication is critical to making progress:

Understanding the role of the FDA & the best ways to engage with the agency

Understanding the role of the FDA & the best ways to engage with the agency

Understanding the role of the FDA & the best ways to engage with the agency

Understanding the engagement process

Understanding the engagement process

Understanding the engagement process

Understanding how to spotlight the patient voice

Understanding how to spotlight the patient voice

Understanding how to spotlight the patient voice

We can ensure advocates are informed, equipped, and empowered to do the work only they can do: speak up for patients who need it most.

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1 - CDER Patient-Focused Drug Development, https://www.fda.gov/drugs/development-approval-process-drugs/cder-patient-focused-drug-development

4

Common Language Drives
Common Goals

[We] conduct[ed] a survey so that we could get an understanding of how black women thought about health... Not surprisingly, most of the words and phrases were psychosocial. About 85% of the words and phrases black women used to define health were things like, I'm calm, I'm at peace, I'm in control. About 10% were financially related, I can keep a roof over my head [and] I can take care of my children. Only about 5% of the words and phrases black women used to define health had anything to do with disease states or physical health...

...The vast majority of us have no language at all to describe our feelings, emotions, or stressors.


– Linda Goler Blount, President and CEO, Black Women’s Health Imperative

A goal by any other name

With more than 50 advocates at the table, the Mental Health Innovation Summit made clear that advocates largely have common goals, but the language they use to articulate those goals varies – often widely. Advocates called for common language to amplify individuals’ lived experiences and make clear the challenges associated with access to care. Using a shared lexicon can create a foundation for PAGs across different disease states to identify common goals and work collaboratively for mental health innovation.

Speak Up

Speak Up

Speak Up

Speak Up

Speak Up

Speak Up

Speak Up

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from
patient advocates

Lack of a Common Language

Lack of a Common Language

Lack of a Common Language

Limited Awareness and Discussion of Mental Health

Limited Awareness and Discussion of Mental Health

Limited Awareness and Discussion of Mental Health

We can get on the same page by uniting patients and advocates behind one common language - making our message louder and clearer.

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5

Innovate with Patients,
Not for Patients

We need to allow the community to share their own stories to empower each other and to confirm the conversation around mental health. This will break down the barriers that exist.


- Stacey Brayboy, Sr. Vice President Public Policy & Government Affairs, March of Dimes

It Starts (and Ends) with Keeping Patients at the Center

Patients and PAGs face many challenges in the mental health landscape that likely require systemic and structural solutions. Throughout the Summit, patient advocates discussed potential innovative approaches that may help to improve mental health support and treatment. The theme that came through most clearly: innovation needs to be driven by patients through a bottom-up approach.

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Partner Up

Partner Up

Partner Up

Partner Up

Partner Up

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from
patient advocates

Advocates highlighted that innovation begins by giving patients a voice and understanding their lived experiences. In doing so, meaningful, transformative innovation can be designed and delivered to patients. Before that can happen, barriers to patients raising their voices must be addressed:

Advocates highlighted that innovation begins by giving patients a voice and understanding their lived experiences. In doing so, meaningful, transformative innovation can be designed and delivered to patients. Before that can happen, barriers to patients raising their voices must be addressed:

Advocates highlighted that innovation begins by giving patients a voice and understanding their lived experiences. In doing so, meaningful, transformative innovation can be designed and delivered to patients. Before that can happen, barriers to patients raising their voices must be addressed:

Advocates highlighted that innovation begins by giving patients a voice and understanding their lived experiences. In doing so, meaningful, transformative innovation can be designed and delivered to patients. Before that can happen, barriers to patients raising their voices must be addressed:

Stigma as a deterrent to diagnosis and treatment

Stigma as a deterrent to diagnosis and treatment

Stigma as a deterrent to diagnosis and treatment

Patient participation in the community

Patient participation in the community

Patient participation in the community

Lack of Communication and Collaboration

Lack of Communication and Collaboration

Lack of Communication and Collaboration

We can give patients and advocates the tools and support to make their voices heard and transform our mental health systems for the better.

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6

Build an Equitable

Future Together

Mental health equity is the state in which everyone has a fair and just opportunity to reach their highest level of mental health and emotional

well-being. The majority of the population that we’re talking about never had that luxury.


– Regina Davis Moss, Associate Executive Director of Public Health Policy and Practice, American Public Health Association 

How do we close mental health disparities?

It’s inarguable that compassionate, culturally competent, and equally accessible care is critical in every healthcare setting. Elevating the importance of such care in mental health has the potential to drive the reduction of overall health disparities.

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Stand Up

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from patient advocates

What we learned from
patient advocates

While many barriers exist to equitably delivering quality mental health care, two were identified by advocates as having consequences that cut across all populations. However, solutions are possible through structural and community-level investments.

While many barriers exist to equitably delivering quality mental health care, two were identified by advocates as having consequences that cut across all populations. However, solutions are possible through structural and community-level investments.

While many barriers exist to equitably delivering quality mental health care, two were identified by advocates as having consequences that cut across all populations. However, solutions are possible through structural and community-level investments.

While many barriers exist to equitably delivering quality mental health care, two were identified by advocates as having consequences that cut across all populations. However, solutions are possible through structural and community-level investments.

Limited Healthcare Access due to Mistrust in the Medical Community

Limited Healthcare Access due to Mistrust in the Medical Community

Limited Healthcare Access due to Mistrust in the Medical Community

Telehealth and the Digital Divide

Telehealth and the Digital Divide

Telehealth and the Digital Divide

We can bridge these divides and make progress toward delivering culturally competent and equally accessible mental health care to all.

Stand Up

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Dr. Barbara Brown

Member at Large

Black Women’s Health Imperative (BWHI)

Randall Rutta

Chief Executive Officer

National Health Council (NHC)

Wendy Davis

Executive Director

Postpartum Support International (PSI)

Elizabeth Stafford (she/her)

Director of Research

National Alliance on Mental Health (NAMI)

John MacPhee

Chief Executive Officer

The JED Foundation

Nathan Tatro

Vice President of Alliance Development

Mental Health America (MHA)

Juanita Pharr

Director of Clinical Affairs

Parkinson’s Foundation

Michael Ward

Vice President of Public Policy & Government Affairs

Alliance for Aging Research

The Mental Health Innovation Summit was designed by a Steering Committee with deep and diverse expertise, and was championed by Sage and Biogen.