Photo by Louis Reed on Unsplash

    I was pleasantly surprised to read this article stating the FDA approval for a new drug trial for schizophrenia. Research into the treatment of schizophrenia is long overdue, as it can be a devastating disease process.

    Schizophrenia is a complicated chronic disease affecting approximately 3.5 million people in the United States, and its annual healthcare costs exceed $155 billion. People living with schizophrenia often experience a reduced quality of life (QOL) and are more likely to be homeless, unemployed, or living in poverty than the general population. Life expectancy for patients with schizophrenia is 15 to 20 years below the average. It is complicated by numerous comorbidities, such as weight gain, increased cardiovascular risk, and mood and cognition changes. Treatment nonadherence can increase the risk of relapse, rehospitalization, and self-harm, leading to a reduced QOL and increased economic burden.

    Schizophrenia is a complex chronic illness with multiple comorbidities and high mortality rates. The development of Long-Acting Injectables and generic medication options has significantly improved patient adherence and reduced care costs in patients with schizophrenia. Despite these advances, schizophrenia has a high economic burden for patients and society. Providers caring for patients with schizophrenia are charged with a complicated task of ensuring individualized care while managing numerous adverse effects that may occur with recommended therapy (Wander, 2020).

Wander, C. (2020).  Schizophrenia: Opportunities to Improve Outcomes and Reduce Economic Burden Through Managed Carehttps://www.ajmc.com/view/schizophrenia-opportunities-to-improve-outcomes-and-reduce-economic-burden-through-managed-care

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FDA Advisory Board In Favor of ALKS 3831 for Schizophrenia

October 9, 2020

Kenny Walter

Relevant Topics

The schizophrenia drug currently has a PDUFA date set for November 15.

    A US Food and Drug Administration’s (FDA) advisory committee has given a recommendation for the ultimate approval of a combination of olanzapine and samidorphan (ALKS 3831) in schizophrenia patients.

    During the joint meeting of the Psychopharmacologic Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee, the group voted 16-1 to approve the treatment, developed by Alkermes.

    ALKS 3831 is an investigational, novel atypical antipsychotic earmarked for once-daily oral application for the 2 psychiatric disorders composed of samidorphan, a novel, new molecular entity, co-formulated with olanzapine, an established antipsychotic agent in a single bilayer tablet.

    Recently, researchers presented data from the ENLIGHTEN-2 trial, a six-month study evaluating the weight gain profile of ALKS 3831 compared to olanzapine in 561 patients with stable schizophrenia.

    “The favorable outcome of today’s joint advisory committee meeting represents an important milestone for the patients, clinicians and families who may benefit from new medicines for the treatment of schizophrenia and bipolar I disorder,” Craig Hopkinson, MD, chief medical officer and executive vice president of R&D at Alkermes, said in a statement. The personal testimonies shared during today’s open public hearing reinforced the need for treatment approaches that consider patients’ overall mental and physical health. The ALKS 3831 development program is part of our ongoing commitment to develop new therapeutic options for adults living with serious mental illness.”

    There is currently a Prescription Drug User Fee Act (PDUFA) target action date of Nov. 15.

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James Lee Carr, Photo courtesy of Maricopa County Sherriff’s office

Last Tuesday my husband called as I dropped our son off at his group home after spending the morning shopping and enjoying coffee together. He wanted to know where we were, and I could hear the unease in his voice. An officer had just been shot outside of a Federal court building in downtown Phoenix and given the recent escalation in violence, I could understand his concern.

We now know that this incident had nothing to do with our current political climate, but it had everything to do with another person with under-treated mental illness that resulted in a violent outcome and a ruined life. James Carr will likely be forgotten and spend the rest of his life in prison. A Federal court officer’s life has been significantly altered.

What can be done to decrease the number of heartbreaking tragedies? We need a laser-like focus on policy and resource efforts toward the gaps in care for those with more chronic forms of mental illness and who are most at risk. This is why ACMI is committed to the following solutions:

  • a person-centered culture (instead of a program-centered),
  • financial & other incentives, based on performance & outcomes, for providers to better serve this population;
  • more Lighthouse- like homes, i.e. community living properties with 24-hours per day and 7-days per week supportive staff inside these properties,
  • humane, well-regulated facilities for a secure residential treatment, involuntary as medically appropriate, for those who need more intensive care for a longer period of time to gain insight and continue their recovery in a less restrictive setting; and,
  • other possible solutions that include increasing capacity and oversight at the Arizona State Hospital.

I will continue to spend every Tuesday with my son who has a chronic mental illness because he is one of the fortunate few whose family has been able to obtain these appropriate and humane levels of treatment and support. Sadly, James Carr’s family will only be able to visit him in prison along with so many other people in this same situation. We must do better in order to prevent these needless tragedies and keep the general public safe.

By Deborah Geesling

ACMI Board

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Photo courtesy of Isaac Geesling Photography 2018

With DJ Jaffe’s passing on August 23, 2020, individuals living with serious mental illness (and their loved ones) lost a highly effective advocate.  Some of us at ACMI, notably Deborah Geesling, lost a friend as well.  So, what do we do next?   How do we build on DJ’s work?

 

DJ knew first-hand what life is like for those living with serious mental illness and their families.   He took up advocacy to make those lives easier, safer, better. And his work instructed and inspired a generation of mental health advocates.   DJ’s messages — always delivered in clear, simple English — are notable for the absence of policy lingo and the gloss of politically correct phrases.  He spoke authentically, unassumingly, and he spoke truth.  With unparalleled, laser-like precision, DJ exposed shortcomings, and failures within the current “behavioral health” industry, a trendy nomenclature that DJ would remind us is a misnomer for what the seriously mentally ill need.  DJ was clever, quiet, studious, relentless.  And, of course, pony-tailed!   He never shied away from a powerful adversary.  No Goliath was too big for DJ.  And so, he left big footprints for those of us engaged in advocacy for the seriously mentally ill.  Perhaps DJ’s greatest attribute was his unparalleled ability to identify and “call out” practical policy failures that created and sustain our behemoth public mental health system.  And while DJ is now gone, we remain blessed by his writings and speeches — his practical, informed, insightful words of wisdom.

 

During DJ’s visit to Phoenix a few years back, he spoke at a church in the East Valley and at an ACMI salon.  The salon was held on a chilly evening beneath a spectacular Arizona sky.   Chuck and Laurie Goldstein’s patio, overlooking the Paradise Valley Desert and facing the spectacular mountains east of the Valley, is both beautiful and inspiring.  Add fireplaces, thoughtfully placed heaters, and blankets, and about 50 of us had a perfect setting for conversation and reflection.  Before DJ began his remarks, we chatted privately; I thanked him for his work, which was so needed.  His typically cogent response: “Well sadly it’s needed, but it really shouldn’t be.” Those words stay with me and remind me of the value of DJ’s concrete focus.

Photo courtesy of Isaac Geesling Photography 2018

Before meeting DJ, I had read the speech that he delivered to the 2012 NAMI New York State convention.  I keep it on my computer “desktop”.  My favorite part is this:

I am not a mental health advocate.   

Like most of you, I am a mental illness advocate.  I think we need less mental health spending and more mental illness spending.  It is the most seriously ill not the worried-well, who disproportionately become homeless, commit crime, become violent, get arrested incarcerated or hospitalized. 360,000 are behind bars and 200,000 homeless because we are now focused on improving mental health, rather than treating serious mental illness.

DJ Jaffe

NAMI/NYS convention 2012

As a tribute to DJ Jaffe, each week for the next year, ACMI’s website will feature a quote from DJ Jaffe. We are calling this, simply, “52 Weeks of Truth Telling From DJ Jaffe”.  By the anniversary of this remarkable’ s man’s passing, we’ll have quite a collection of words to live by .. a path of footprints, so to speak, to guide our advocacy and to honor this wonderful man.  RIP, DJ JAFFE.

Holly R. Gieszl, JD

Founding Member, Board of Directors, the Association for the Chronically Mentally Ill.

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Photo courtesy of Town Moor, Newcastle upon Tyne, United Kingdom

Forward by Dr. Charles Goldstein

It is well known to physicians like me who have spent a lifetime in Emergency Medicine that many patients are super-utilizers of the healthcare system, which we refer to in the vernacular of the ER as “frequent fliers.”

Quite often, these individuals run up high costs to the healthcare system, driven to emergency department rooms for primary care due to an underlying undertreated or untreated, serious mental illness. I believe that one of the reasons for this failure of treatment is due to a lack of safe, appropriate, and affordable housing. Though there are many other reasons why individuals with serious mental illness fail in our current behavioral health system, a fundamental problem is a lack of safe and affordable housing.

Recent findings in the Milliman firm report, a provider of actuarial and related products and services, entitled “How do individuals with behavioral health conditions contribute to physical and total healthcare spending,” revealed that the authors examined in detail the total health care costs for super-utilizers.  Its findings were that just a fraction of individuals with serious mental illness accounted for nearly half the overall health care costs of the entire population of the study group.

Remember that this is only healthcare costs, not other costs associated with undertreated or untreated mental illness, which may include interactions with community resources such as police, fire personnel, and the judicial system. Sadly, this population often ends up in jails and or prisons or homeless due to behaviors related to undertreated or untreated mental illness.

Please look at the recent article by the Treatment Advocacy Center, and its embedded link to the Milliman report for further details.

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RESEARCH WEEKLY: The Path Forward for Severe Mental Illness and Super-Utilization

By Elizabeth Hancq

Prevelance Rates by Cost Group Chart

RESEARCH WEEKLY: The Path Forward for Severe Mental Illness and Super-Utilization

By Elizabeth Hancq

Individuals with severe mental illness are often caught in the revolving door of super-utilization, cycling through inpatient hospitals, emergency departments, jail or homeless shelters.

Super-utilization refers to the phenomenon where a relatively small number of people make relatively frequent use of high-cost services at enormous public expense. Anecdotes of the role of severe mental illness in super-utilization can be found in countless local media stories, such as Super Dave in Tennessee who was arrested more than 250 times in his lifetime, or Jane in New Jersey who generated $4.4 million dollars in hospital charges in a five-year period.

However, the enumerated costs of the role of severe mental illness in super-utilization are largely unknown. “Accounting for barely 3% of the adult population, individuals with diagnoses of schizophrenia and severe bipolar disorder are known to be overrepresented in the systems most affected by the failure of the US mental health system, principally when untreated. Yet despite the human and economic toll of this pattern, the role of SMI in high utilization is largely uncharted,” the Office of Research and Public Affairs wrote in the 2017 report on the topic, A Crisis in Search of Data. 

A ground-breaking new report released last week by Milliman is an important step toward understanding the role of serious mental illness in high utilization of health and mental health care services. The report’s findings provide cost estimates to the total healthcare services received and compares spending patterns between high-cost groups, with a focus on mental health and substance use disorders.

The study authors utilized 2017 healthcare claims data from 21 million individuals with commercial insurance. They compared levels of spending for physical and mental health care by spending group, high- cost (top 10%) and non-high-cost (remaining 90%), across the prevalence of mental health and substance use disorders among this population.

The researchers found that 57% of the individuals in the high-cost group had a mental health or substance use disorder, accounting for less than 6% of the total population but 44% of the total healthcare costs. Although the total healthcare costs for the individuals in this group averaged $45,782 per year, half of these individuals had less than $95 of spending for mental health or substance use disorder treatment in a one-year period.

Accounting for fewer than 1% of the 21 million individuals in the study sample, individuals with severe mental illness accounted for 3.3% of the total healthcare costs with the highest percentage of mental health service costs for any of the groups studied. Individuals with severe mental illness “have 6.3 times higher annual total healthcare costs and 4.2 times higher medical/surgical costs,” according to the report.

The findings in the report have important implications for policy makers and insurers to consider regarding the health coverage and spending associated with high-cost individuals. The report further validates the role of severe mental illness in super-utilization and points to how the current fragmented healthcare system has contributed to a lack of equitable, accessible treatment for individuals with severe mental illness. In addition, the findings underscore the importance of integrated mental health and substance use disorder treatment to prevent the high impact of these disorders on healthcare spending and reduce the personal and societal consequences of lack of treatment for individuals in need.

References: 

Elizabeth Hancq is the director of research at the Treatment Advocacy Center.

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by Association for the Chronically Mentally Ill

Los Angeles financial district skyscrapers are seen behind a homeless tent encampment, September 23, 2015 in downtown Los Angeles. Los Angeles officials declared the homeless situation a public emergency. making Los Angeles the first city in the nation to take such a drastic step in response to its mounting problem with street dwellers. ROBYN BECK/AFP/Getty Images

Date and Time

Tue, March 3, 2020

6:30 PM – 9:30 PM MST

Location:

Harkins Theatres North Valley 16

3420 East Bell Road

Phoenix, AZ 85032

Description

THEATRE OPENS AT 6:30 pm

SCREENING BEGINS 7 pm

PANEL DISCUSSION Post Show

Description:

Ken Rosenberg becomes a filmmaker to show the national health crisis mental illness has become. The film delves into what is happening in LA as Rosenberg follows people suffering from bipolar disorder, schizophrenia, and other chronic conditions. The people have shown repeatedly cross the paths of ER doctors and nurses, police officers, lawyers, and prison guards, receiving inadequate, little or no care. Rosenberg depicts the gritty view of the mentally ill encounter in Los Angeles County.

Buy tickets $20.00

Photo illustration by Slate. Photo by Thinkstock.       

Association For The Chronically Mentally Ill (ACMI) believes there is sea change going on around mental illness and what has worked and what has areas for improvement.  Among the most promising changes is that SAMSHA and mental health “think tanks” as well as community-based organizations like ACMI are discussing the need for additional research on biomedical aspects of serious mental illness rather than just focusing on “stigma” or general mental health or “wellness.” Not enough research dollars are targeted to investigate the root causes of mental illness and effective treatment modalities from medication to effective interventions in housing and social supports. People living with serious mental illness like schizo-affective disorder are trying to survive this devastating biological brain illness. Often without adequate support.

ACMI is encouraged by the proceedings of the White House Mental Health Summit (Dec 2019) which will provide additional funding dollars designated towards research on Mental Illness research.

 Some advocates believe that  “mental health problems tend to be under-researched, undertreated, and over-stigmatized.

We need to start focusing on treatment over punishment. Research that will lead to better treatment and outcomes – measured by changes in jail and prison incarceration rates, number and length of hospitalizations, and treatment compliance over a sustained period of time. Mental health treatments remain largely inaccessible to many, especially those from lower socio-economic or disadvantaged groups. These families often lack advocates for their ill family member and can not afford private attorneys to make the system “bend” to become more patient-focused. One estimate by the Epidemiologic Catchment Area Survey reported that 40 percent of adults with severe mental illness did not receive any psychiatric care within a one-year period. Many individuals will continue to suffer from serious mental illness until we can reduce barriers to treatment access. This is a tragedy — and a likely reason for the recent tragedies in which untreated individuals living with serious mental illness engaged in acts of violence against others in the community. The National Institutes of Mental Health (NIMH), the nation’s largest funder of mental health research, has seen flat budgets since 2003, and currently funds less than 20 percent of the proposed research trials it receives. This tight funding environment discourages new researchers from entering the mental health arena and slows research progress.

Stigma is important in the general conversation to ensure parents, teachers, physicians and other primary caregivers identify the early signs of mental illness; most are present before the late teenage years.

But, importantly, in Thomas R. Insel, M.D. director of National Institute of Mental Illness directors’ message he indicates the real need for basic research.

This is promising!

If we want to offer the most effective mental health treatments, we need cutting-edge research to test those treatments and understand how they work.

We think it is beneficial for all families to submit comments asking for more research dollars target research for serious mental illness.

CALL TO ACTION!

You can submit feedback online via the NIMH request for information page, or mail your comments to:

NIMH Strategic Planning Team
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663

From the Treatment Advocacy Center- (December 18, 2019) The National Institute of Mental Health (NIMH) has a history of failing to prioritize serious mental illness in its research. Unfortunately, their recently-released five-year strategic plan draft signals their intention to continue to ignore those with the most impairing disorders.

Despite seeking public comment, the NIMH’s plan, even by the standards of federal reports, is almost unreadable. While the issues are complicated, the explanation of why they are vital shouldn’t be. However, it is not written in a way that is easy to understand or make sense of. For example, Strategy 3.3.C on page 28 reads “Enhancing the practical relevance of effectiveness research via deployment focused, hybrid effectiveness-implementation studies.”

Spearheaded by our founder, Dr. E. Fuller Torrey, the Treatment Advocacy Center has put together a comprehensive analysis of the five-year strategic plan, highlighting how it would fail those with severe mental illness. We identify sixteen concrete examples of research initiatives the NIMH should be pursuing today, initiatives that could help people with serious mental illness recover and live better lives.

Yesterday, the Treatment Advocacy Center submitted our public comment to the NIMH. However, we urge you to submit your own here. Use our comments, but also share your story of how the decisions of NIMH affect you and your loved ones. These stories are vital to help NIMH understand why their proposed priorities are misplaced.

Here are some points to consider:

  • The report fails to reflect the urgency of our national mental health crisis: As Dr. Torrey summarized, “Overall, I would say that this report is promising for people who plan to be affected with a serious mental illness in 2050 or beyond, but for anyone who is currently affected, the report offers no hope. I personally find this unacceptable and inexcusable.”
  • Where are the people who are experiencing the consequences of our failed mental health system? Except for one paragraph on the increasing national suicide rate, there is no indication whatsoever that mental health services for individuals with serious mental illnesses are an increasing public disaster. There is no mention of homelessness, criminalization of mental illness, the fact that emergency rooms are overrun with people with mental illness, or the burden of the failures of the mental health system on law enforcement.
  • Continued misplaced and unbalanced priorities: The strategic plan is strongly weighted towards basic brain science, with a continued strong emphasis on genetic research. It ignores the fact that the genetic research to date has been remarkably unproductive and likely to continue to be so, as described in a paper by Dr. Torrey and Dr. Robert Yolken published in Psychiatry Research in August.

You can submit feedback online via the NIMH request for information page, or mail your comments to: NIMH Strategic Planning Team
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663

From the National Institute of Mental Health Strategic Plan- here are the four priority areas.

The National Institute of Mental Health
The National Institute of Mental Health
The National Institute of Mental Health
The National Institute of Mental Health

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Library of Congress, Prints & Photographs Division, PA-1636

 From Bedlam- When Dr. Kenneth Rosenberg trained as a psychiatrist in the late 1980s, the state mental hospitals, which had reached peak occupancy in the 1950s, were being closed at an alarming rate, with many patients having nowhere to go. There has never been a more important time for this conversation, as one in five adults – 40 million Americans – experience mental illness each year. Today, the largest mental institution in the United States is the Los Angeles County Jail, and the last refuge for many of the 20,000 mentally ill people living on the streets of Los Angeles is L.A. County Hospital. There, Dr. Rosenberg begins his chronicle of what it means to be mentally ill in America today, integrating his own moving story of how the system failed his sister, Merle, who had schizophrenia. As he says, “I have come to see that my family’s tragedy, my family’s shame, is America’s great secret.”

Dr. Rosenberg gives readers an inside look at the historical, political, and economic forces that have resulted in the greatest social crisis of the twenty-first century. The culmination of a seven-year inquiry, Bedlam is not only a rallying cry for change, but also a guidebook for how we move forward with care and compassion, with resources that have never before been compiled, including legal advice, practical solutions for parents and loved ones, help finding community support, and information on therapeutic options.

 Cheryl Roberts, executive director of the Greenburger Center for Social and Criminal Justice, says “Asylums never went away; they just grew into two varieties: posh for the wealthy (in the form of a handful of fancy $100,000-plus a year mental institutions) and prisons for the poor.”

Jonathan Sherin, MD, PhD, director of Los Angeles County Department of Mental Health, doesn’t mince words. He says we did not get rid of asylums in Los Angeles in the 1960s with deinstitutionalization: we just substituted the local asylum for an ‘indoor” one called the Los Angeles County jail and an “outdoor” asylum called skid row. John Snook, director of the Treatment Advocacy Center, agreed that the dismantling of the asylum was really “trans-institutionalization”- transferring the fate of patients from asylums to streets and prisons. We still hospitalize people, they are “micro-hospitalizations”, says Snook, referring to the average length of stay of three to five days. “The state of California is a canary in the coal mine from day one,” he said, because it emptied out its hospitals early. In 1975, the city’s “containment” policy squeezed people with substance abuse disorders, mental illness, and other disabilities into a fifty-block radius skid row- helping it become what a Los Angeles Times reporter called “a dumping ground for hospitals, prisons, and other cities to get rid of people with nowhere else to go.

According to Dr. Edwin Fuller Torrey (an American psychiatrist and schizophrenia researcher. He is the Associate Director of Research at the Stanley Medical Research Institute and Founder of the Treatment Advocacy Center), the United States currently has just 2 to 3 percent of the psychiatric treatment beds that we had sixty years ago: “We have so few beds available for people with mental illness that there’s nowhere to put them.”  Because emergency rooms are legally required to treat anyone who comes through the door, people with serious mental illness (SMI) often wind up staying there for days or even weeks at a time waiting for a psychiatric treatment bed. We see that all across the country.

What Dr. Sherin, Snook, and many other policy experts hold partly responsible for this mess is the IMD (Institutes for Mental Diseases) exclusion rule, enacted in 1965 as part of the Medicaid and Medicare legislation. “The IMD exclusion explicitly prohibited Medicaid from paying for patient care in state or private hospitals that specialize in mental health care. It prohibits federal Medicaid payments for services delivered to individuals aged twenty-two to sixty-four years residing in IMDs, defined as “hospitals, nursing homes, or other institutions with more than sixteen beds that are primarily engaged in providing diagnosis, treatment, or care of persons with ‘mental diseases’ other than dementia or intellectual disabilities. To repeat- no mental hospital with more than sixteen beds.”

ACMI is encouraged by some recent actions:

·         One sign that America is waking up to our mental health crisis is the 21st Century Cures Act of 2016, which provided additional research and treatment reforms.

·         The creation of a mental health czar position in the Department of Health and Human Services now occupied by Dr. Elinore McCance-Katz, MD, Ph.D.

·         Dr. Elinore McCance-Katz, MD, PhD. has returned to SAMSHA with a priority to address Serious Mental Illness, something that had not been a priority at SAMSHA for years.

·         SAMSHA focusing on evidence-based practices.

·         The recent White House Mental Illness summit (see links below)

·         Increased discussion about changes to the IMD exclusion

·         The rise of celebrity candor about their personal experiences with mental illness.

In Arizona we are fortunate to have strong laws to help persons with SMI that do not have the insight to understand they are ill. We are often contacted by families from other states that do not have our strong laws.

Arizona will also lead the nation is providing a new level of care that is less restrictive than a level 1 psychiatric hospital, but more than community living. This level of care – secure residential treatment – will be a closely monitored program that will assist the chronically mentally ill in their recovery.

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 Below please find information mentioned in the Summit along with full video coverage and a transcript of President Donald J. Trump’s remarks.

ADDITIONAL INFORMATION

U.S. Department of Housing & Urban Development (HUD)

Office of National Drug Control Policy (ONDCP)

  • National Drug Control Policy Strategy: Establishes the Administration’s priorities for addressing the challenge of drug trafficking and use
  • Federal Rural Resources Guide: A listing of Federal programs that can be used to address substance use disorder and opioid misuse in rural communities
  • Community Assessment Tool: Provides a snapshot of county-by-county data about drug overdose deaths and socio-economic conditions in a county to help leaders build grassroots solutions for prevention, treatment and recovery
  • School Resource Guide: Guide for teachers, administrators and staff about resources available to help educate and protect students from substance misuse
  • Treatment Services Locator: Mentioned in the Federal Leaders Perspective Panel
  • Google Drug Takeback: Mentioned in the Federal Leaders Perspective Panel

U.S. Department of Justice (DOJ)