People with SMI on the streetsImage by Geesling photography -SMI people on the streets of Phoenix

Linda Mimms initially shared this article via social media. This article is a brilliant take by Dr. Rob Laitman on what it costs our society monetarily and, more importantly, our humanity. Failure to appropriately treat people with mental illness disorders is caused by not meeting people’s treatable medical brain disorders, in addition to multiple other factors. We have been violating the CIVIL RIGHTS of this neglected group of sick citizens who have needed treatment for decades with disastrous results. The family and community burden is one of these many disastrous outcomes. These members’ lives with serious mental illnesses are often 25 years shorter than the rest of the population. Jails and prisons are treating (though inadequately) our sickest society’s members using our criminal system as an alternative to a therapeutic environment.  They have become a de facto significant psychiatric provider in this punitive setting. We continue to treat the behaviors of mental illness as criminal acts.

Charles Goldstein, MD

  “The more I look into the horror of our healthcare system, the more outraged I become. Let me give you some perspective as a nephrologist (kidney specialist). End-Stage Renal Disease (ESRD) is the only medical diagnosis that automatically qualifies you for Medicare. Currently, there are 468,000 ESRD patients in the USA. The average expenditure per patient per year is $150,000. The total cost is 70 billion dollars. Employment in ESRD patients is 20% employed to age 55 and less than 3 % thereafter. Now let us look at the psychotic spectrum disorders representing 2% of the population (1 % schizophrenia spectrum and 1 % bipolar with psychosis). This percentage represents 6,620,000 individuals. If we were to support their medical needs fairly and comparably, we would be willing to devote 1 trillion dollars just for their care.

   So what do we spend? When it comes to direct patient care for schizophrenia, the most recent estimate from a 2016 study was 37.4 billion. If you were to assume that the cost of taking care of someone with bipolar with psychosis was similar (actually, we know it is substantially less), the cost would be about 75 billion. Essentially we are only spending less than 1/10 for our patients with psychosis medical care than we have already decided would be appropriate in the ESRD population.

   What is even more outrageous is this lack of support leads to tremendous non-direct healthcare costs, including law enforcement, homeless shelters, and productivity losses of both the patients and the caregivers. Specifically, for schizophrenia, unemployment cost was 59.2 billion, and caregiving was 52.9 billion.

   What drives this tremendous disparity in resource allocation starts with the nihilistic belief that psychotic spectrum disorders are not treatable. Why should we devote resources to a hopeless population? Another component is that 50 % of this population has anosognosia, and therefore does not feel that they need treatment. Given the current status of the laws that “protect” patient’s rights, such as HIPAA and the underutilized and underpowered AOT laws, it is impossible to engage the patient even to start an effective treatment. Where we are right now is less than 50% of all patients with psychosis receive any care. The biggest psychiatric providers are the LA jail, Cook County jail, and Rikers Island jail. It is estimated that 20-40% of the prison population has a psychotic illness. The ever-growing homeless population also has been found to have a similar % of serious mental illness. At present, in those receiving treatment, only 14 % are in meaningful recovery.

   The question is, what are we doing wrong, or is this just a hopeless population? What does the evidence say? As it turns out, there is increasing evidence that early identification of prodromal high-risk individuals can be identified, and by working on their processing speed (REM) the development of the full-fledged psychotic disorder can be aborted. Even after the development of psychosis, early treatment with the most effective treatment and wrap-around social services can change the trajectory of the illness. This is being demonstrated impressively with the Recovery After Initial Schizophrenia Episode (RAISE) study.  Remarkably,  the VA has shown that if patients are switched to clozapine, there is a savings of over $ 20,000 accrue per patient-year initially, and as monitoring becomes less, that saving grows. Switching to clozapine has also led to the best survival, the lowest hospitalization rate, and the best quality of life.  In my hands, I have demonstrated what is possible with optimal clozapine care. 75/103 of my patients treated over six months are in meaningful recovery. I define meaningful recovery as being in school, work, or a PROS program training to work. Hospitalization and, therefore, the cost of care has been minimized. In over 330 patient-years of care, there have been only 1.3 years of hospitalization. This translates out on average 1-2 days/year in the hospital. Medical compliance has been over 90% in those that have been successfully engaged, and overall over 98% of the population considers themselves improved with my care.

   So we need to let our legislators know that they are not throwing good money after bad money. We need to have the resources to change the barriers to care. Specifically, we need a national uniform rational AOT program that gives the provider the ability to treat the patient where the need is demonstrated. Serious mental illness is a team sport, and communication has to be seamless, so we need to reform HIPAA to assure that caregivers are involved in every step of the way. We need to invest in improving access. Taking care of these patients takes a lot of work, and the reimbursement is dismal for the provider. So I return to the ESRD program. For every dialysis patient, the provider is paid a fixed amount for dialysis management. Clozapine is a lot of work and is superior to all other antipsychotics in every setting, and yet only 2% of the population is so treated. We need to invest in these patients and provide a treatment stipend for management. A reasonable fee schedule would be initially $1000/mo for the first six months, $750/mo for the next six months, and then $500/mo after one year. If the patient is hospitalized, the amount should be reduced proportionally to the time spent in the hospital. This is how the ESRD program works, and this carrot has led to superior clinical care. In our population, this small carrot could be a game-changer not only in the quality of care but the end of being a tremendous cost saver. With the cost-saving, we would then be able to devote more resources to all of the appropriate supports.

   In summary, we need to convince the powers that be to devote appropriate resources. We need bravery to insist on rational laws that help engage our patients and families in therapeutic relationships. Our medical professionals need to be re-educated in what is possible and learn the correct approach to treatment. We need to pay adequately for this arduous but rewarding work. If we do this, we will be able to provide an optimal clozapine based regimen with full wrap-around psycho-social services. With this, we will not only end suffering, but we will see a majority of this population lead lives of purpose and meaning.” Robert S. Laitman, MD

ACMI Board

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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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Courtesy of Healing Minds NOLA September 16th, 2020.

 

     Hello all, on Friday, September 18th, 2020 I watched a presentation by Healing Minds NOLA on the IMD exclusion with Tim Murphy and Teresa Pasquini, moderated by Janey Hays and Eric Smith. This segment focused on the IMD exclusion;  a part of the original 1965 Medicaid law. I encourage each of you to watch this presentation.

    The Institutions for Mental Disease (IMD) exclusion is an outdated, discriminatory federal rule that creates significant barriers to treatment for adults with severe mental illness. Under this rule, Medicaid restricts payments to states for non-geriatric adults (the exclusion applies to individuals aged 21 through 64) from receiving psychiatric care in a treatment facility with more than 16 beds. This limits the ability of states to provide an adequate number of treatment beds for psychiatric illnesses, especially those individuals with severe mental illness.

    Tim Murphy, Ph.D. a psychologist, and former Pennsylvania State Senator and U. S. Congressman, was the primary author of “HELPING FAMILIES IN MENTAL HEALTH CRISIS ACT 2015 HR 2646” (“HFMHCA”).  The HFMHCA requires the Assistant Secretary of Mental Health to focus on improving the most important metrics associated with mental illness and particularly severe mental illness, including rates of suicide and attempts, emergency psychiatric hospitalizations, emergency room boarding, arrests, incarcerations, victimization, and homelessness. The bill dramatically adjusts the threshold to be used in determining the efficacy of programs. It establishes a coordinating committee to advise the Secretary that includes significant representation from criminal justice, a needed addition of an important stakeholder to the national conversation.
Read more at: https://mentalillnesspolicy.org/federalmentalillnesslegislation/hr2646/hr2646narrative.html

   Representative Tim Murphy worked with many families on the HFMHCA legislation.  Unfortunately, the final version of the legislation HFMHCA included measures to repeal the IMD exclusion, but these provisions never made it into the final law. Also left on the cutting room floor was a more precise and transparent definition of “grave disability”.  These are important items for consideration going forward.

 

This webinar is about the IMD exclusion, but it goes much further explaining the history of mental illness, severe mental illness, and many of our behavioral health system’s shortcomings. This video is a straightforward exposition of how our behavioral health system fails people with serious mental illness. I urge everybody to watch it. In addition, Representative Tim Murphy makes a very impassioned plea for advocacy.

 

For this and several more informative webinars, I urge you to visit Janet Hays, Director (Healing Minds NOLA) & Eric Smith (Mental Health Advocate and Graduate Student). They are co-hosting an 8-part series on Implementing a Full Continuum of Coordinated Psychiatric Treatment and Care.

 

   Learn about the IMD exclusion; which is Medicaid Institutions for Mental Disease (IMD) exclusion is an outdated, discriminatory federal rule that creates significant barriers to treatment for adults with severe mental illness. Under this rule, Medicaid payments to states are prohibited for non-geriatric adults receiving psychiatric care in a treatment facility with more than 16 beds.

By Dr. Charles Goldstein

What Is the IMD Exclusion?

   The IMD exclusion is a long-standing policy under Medicaid that prohibits the federal government from providing federal Medicaid funds to states for services rendered to certain Medicaid-eligible individuals who are patients in IMDs (§1905(a)(30)(B) of the Social Security Act [SSA]). When a Medicaid-eligible individual is a patient in an IMD, he or she cannot receive Medicaid coverage for services provided inside or outside the IMD. Due to the exceptions explained in the “Legislative History” section, the IMD exclusion applies to individuals aged 21 through 64. Determination of whether a facility is an IMD depends on whether its overall character is that of a facility established and maintained primarily to care for and treat individuals with mental diseases. Examples include a facility that is licensed or accredited as a psychiatric facility or one in which mental disease is the current reason for institutionalization for more than 50% of the patients. For the definition of IMDs, the term mental disease includes diseases listed as mental disorders in the International Classification of Diseases, with a few exceptions (e.g., mental retardation). (See Centers for Medicare & Medicaid Services [CMS], State Medicaid Manual, Part 4, §4390.) Under this definition, substance use disorders (SUDs) are included as mental diseases. If the substance abuse treatment follows a psychiatric model and is performed by medical personnel, it is considered the medical treatment of mental disease.

   However, even with the IMD exclusion, states can receive federal Medicaid funding for inpatient mental health services for individuals aged 21 through 64 outside of an IMD. States can provide Medicaid coverage for services rendered in facilities that do not meet the definition of an IMD, such as facilities with 16 or fewer beds and facilities that are not primarily engaged in providing care to individuals with mental diseases. https://fas.org/sgp/crs/misc/IF10222.pdf

 

 

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Photograph by Laurie Goldstein on streets of San Diego August 23rd, 2020

It seems to be tragic that individuals suffering from the symptoms of serious mental illness must try and fail oral medication therapies before qualifying for long-acting injectables. Besides being much more effective and efficient in medicine delivery, adherence increases significantly. Physicians are well aware that people do not take medications as directed. Lack of compliance in taking medicines as prescribed holds for physical health and mental health treatments. A person suffering from bronchitis may stop taking their antibiotics after five days of a 10-day course once they are feeling better. So, it is not surprising that many people struggle with adherence to daily or twice daily oral medications.

The issue of non-adherence has dire consequences if the condition involves the brain and psychosis. Repeated psychotic events can result in a change in the baseline. According to McKnight (2017) “Researchers now stage schizophrenia. Just like cancer, the more advanced the stage, the worse the outcome,” said Dr. Nasrallah, the Sydney W. Souers Endowed Chair and professor of psychiatry and behavioral neuroscience at Saint Louis University, told his audience. “The additional damaging effects of the second episode is what leads to clinical deterioration and can start the process of treatment resistance. But if no psychotic episodes are allowed to recur after the first episode, many patients can return to their baseline functioning, such as school or work.”

As data mount confirming the neurodegenerative effects of psychotic episodes in schizophrenia, one expert urges psychiatrists to think of psychosis as a “brain attack” which, like heart attacks, must be prevented from recurring. McKnight (2017)

According to McKnight (2017) “Schizophrenia doesn’t have to be progressive neurodegenerative unless patients relapse again and again, but that happens all the time because we give our patients pills they don’t take as prescribed. There are many reasons for poor adherence,” Henry A. Nasrallah, MD, said at the meeting held by Global Academy for Medical Education.

 By Laurie Goldstein 

ACMI

 

See more surprising schizophrenia statistics, including:

  • Rise in cost related to relapse
  • Number of hospital beds available for patients
  • Connection between adherence and relapse

https://www.medscape.com/infosites/285165.1/isarticle-1?src=0_nl_sm_0&uac=371324FZ

McKnight, W. (2017, July). First-episode psychosis is a ‘brain attack,’ and LAIs can prevent recurrence, expert says. Clinical Psychiatry News2017(1), 1.

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Photo by Michael Jin & Photo by Camilo Jimenez on Unsplash

Recently, when we were still permitted to congregate socially, I was at a Friday night service in my synagogue when a young woman in the back row emitted a frightening scream, fell, and began convulsing. During her seizure, she hurt herself by falling and hitting her head (danger to self) and broke a chair nearby when she fell on it (property damage). Of course, paramedics were called who attended to her and eventually transported her to a hospital, whereupon I lost contact with this particular young woman and her continued treatment. At no point were the police involved with this manifestation of symptoms of an otherwise presumably well-controlled person with epilepsy. Being an emergency physician myself, I can only tell you that my experience with people with seizure disorders being brought to the emergency room is that they are never subsequently taken to jail.  The options are either hospitalization or, more frequently, discharged home on appropriate medications with appropriate follow up.

 

In another hypothetical scenario, a “brittle diabetic,” usually well-controlled on his insulin, passes out while driving and knocks over a Postal box when he runs into it with his car (a federal crime!).  Police and paramedics show up; the patient is taken to an emergency room where it is ascertained that he indeed has diabetes and had become hypoglycemic. The patient is either admitted to the hospital or sent home on appropriate medications with appropriate follow-up.

 

In neither of these cases detailed above, were the patients assumed to be criminals.  People exhibiting symptoms from a chronic disease are treated appropriately for their symptoms. Their underlying illness and hospitalization, if needed, are not a problem; there are plenty of inpatient beds for them.

 

Let’s contrast this with what might have happened if this was a person with serious mental illness attending the same Sabbath service and became symptomatic, started flailing around, and did some property damage as this woman did. Police and/or paramedics would have been called. The patient may or may not have been taken to an emergency room and may or may not have gone to jail because society draws a fine line (not so fine) between apparent “medical” conditions and “psychiatric” conditions. Unfortunately, in a behavioral health crisis, when people become symptomatic because of their underlying disease, the behaviors related to their disease can suddenly be considered a crime. Also, if it was adjudged that this patient needed further treatment on an inpatient basis, they would have found this to be nearly impossible as there is an extremely limited number of inpatient psychiatric beds in the state of Arizona.

 

Currently, experts recommend approximately one psychiatric inpatient bed for every 250,000 people. In Maricopa County alone, there are about 4 1/2 million people; this equates to an inpatient psychiatric capacity that should exist of around 1,800 inpatient beds. At present, in Maricopa County, there are just 55 beds available in the public system for long-term psychiatric treatment. The inadequate number of limited long-term inpatient psychiatric beds is a figure so egregiously deficient that the reader might well be shocked that this is the truth; shamefully, it is.

 

We need to correct this appalling lack of inpatient psychiatric therapy currently available for the Seriously Mentally Ill.

Charles Goldstein, MD

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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.

________________________________________________________________________________________________

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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Queen Butterfly photo by Bankim Desai @rochangraphics

COVID-19 update as we start to leave our cocoons by Dr. James Stein- Cardiologist at UW

Forward by Laurie Goldstein

With all the noise in the media and the conflicting advice, it is hard to determine fact from fiction regarding the spread of COVID and how to protect yourself. As with many choices in life, it depends. It depends on your risk factors and your comfort level.

It appears that this disease will be with us for some time, and I think there is also harm (both mental and physical) from social isolation—a quandary for sure.

I enjoyed the article by Dr. James Stein as it provides a reasonable approach to rejoining society.? Enjoy this article as I have.

Laurie Goldstein

_______________________________

The purpose of this post is to provide a perspective on the intense but expected anxiety so many people are experiencing as they prepare to leave the shelter of their homes. My opinions are not those of my employers and are not meant to invalidate anyone else’s – they simply are my perspective on managing risk.

In March, we did not know much about COVID-19 other than the incredibly scary news reports from overrun hospitals in China, Italy, and other parts of Europe. The media was filled with scary pictures of chest CT scans, personal stories of people who decompensated quickly with shortness of breath, overwhelmed health care systemsand deaths. We heard confusing and widely varying estimates for risk of getting infected and of dying – some estimates were quite high.

Key point #1: The COVID-19 we are facing now is the same disease it was 2 months ago. The “shelter at home” orders were the right step from a public health standpoint to make sure we flattened the curve and didn’t overrun the health care system which would have led to excess preventable deaths. It also bought us time to learn about the disease’s dynamics, preventive measures, and best treatment strategies – and we did. For hospitalized patients, we have learned to avoid early intubation, to use prone ventilation, and that remdesivir probably reduces time to recovery. We have learned how to best use and preserve PPE. We also know that several therapies suggested early on probably don’t do much and may even cause harm (ie, azithromycin, chloroquine, hydroxychloroquine, lopinavir/ritonavir). But all of our social distancing did not change the disease. Take home: We flattened the curve and with it our economy and psyches, but the disease itself is still here.

Key point #2: COVID-19 is more deadly than seasonal influenza (about 5-10x so), but not nearly as deadly as Ebola, Rabies, or Marburg Hemorrhagic Fever where 25-90% of people who get infected die. COVID-19’s case fatality rate is about 0.8-1.5% overall, but much higher if you are 60-69 years old (3-4%), 70-79 years old (7-9%), and especially so if you are over 80 years old (CFR 13-17%). It is much lower if you are under 50 years old (<0.6%). The infection fatality rate is about half of these numbers. Take home: COVID-19 is dangerous, but the vast majority of people who get it, survive it. About 15% of people get very ill and could stay ill for a long time. We are going to be dealing with it for a long time.

Key point #3: SARS-CoV-2 is very contagious, but not as contagious as Measles, Mumps, or even certain strains of pandemic Influenza. It is spread by respiratory droplets and aerosols, not food and incidental contact. Take home: social distancing, not touching our faces, and good hand hygiene are the key weapons to stop the spread. Masks could make a difference, too, especially in public places where people congregate. Incidental contact is not really an issue, nor is food.

What does this all mean as we return to work and public life? COVID-19 is not going away anytime soon. It may not go away for a year or two and may not be eradicated for many years, so we have to learn to live with it and do what we can to mitigate (reduce) risk. That means being willing to accept some level of risk to live our lives as we desire. I can’t decide that level of risk for you – only you can make that decision. There are few certainties in pandemic risk management other than that fact that some people will die, some people in low risk groups will die, and some people in high risk groups will survive. It’s about probability.

Here is some guidance – my point of view, not judging yours:

  1. People over 60 years old are at higher risk of severe disease – people over 70 years old, even more so. They should be willing to tolerate less risk than people under 50 years old and should be extra careful. Some chronic diseases like heart disease and COPD increase risk, but it is not clear if other diseases like obesity, asthma, immune disorders, etc. increase risk appreciably. It looks like asthma and inflammatory bowel disease might not be as high risk as we thought, but we are not sure – their risks might be too small to pick up, or they might be associated with things that put them at higher risk.

People over 60-70 years old probably should continue to be very vigilant about limiting exposures if they can. However, not seeing family – especially children and grandchildren – can take a serious emotional toll, so I encourage people to be creative and flexible. For example, in-person visits are not crazy – consider one, especially if you have been isolated and have no symptoms. They are especially safe in the early days after restrictions are lifted in places like Madison or parts of major cities where there is very little community transmission. Families can decide how much mingling they are comfortable with – if they want to hug and eat together, distance together with masks, or just stay apart and continue using video-conferencing and the telephone to stay in contact. If you choose to intermingle, remember to practice good hand hygiene, don’t share plates/forks/spoons/cups, don’t share towels, and don’t sleep together.

  1. Social distancing, not touching your face, and washing/sanitizing your hands are the key prevention interventions. They are vastly more important than anything else you do. Wearing a fabric mask is a good idea in crowded public place like a grocery store or public transportation, but you absolutely must distance, practice good hand hygiene, and don’t touch your face. Wearing gloves is not helpful (the virus does not get in through the skin) and may increase your risk because you likely won’t washing or sanitize your hands when they are on, you will drop things, and touch your face.
  2. Be a good citizen. If you think you might be sick, stay home. If you are going to cough or sneeze, turn away from people, block it, and sanitize your hands immediately after.
  3. Use common sense. Dial down the anxiety. If you are out taking a walk and someone walks past you, that brief (near) contact is so low risk that it doesn’t make sense to get scared. Smile at them as they approach, turn your head away as they pass, move on. The smile will be more therapeutic than the passing is dangerous. Similarly, if someone bumps into you at the grocery store or reaches past you for a loaf of bread, don’t stress – it is a very low risk encounter, also – as long as they didn’t cough or sneeze in your face (one reason we wear cloth masks in public!).
  4. Use common sense, part II. Dial down the obsessiveness. There really is no reason to go crazy sanitizing items that come into your house from outside, like groceries and packages. For it to be a risk, the delivery person would need to be infectious, cough or sneeze some droplets on your package, you touch the droplet, then touch your face, and then it invades your respiratory epithelium. There would need to be enough viral load and the virions would need to survive long enough for you to get infected. It could happen, but it’s pretty unlikely. If you want to have a staging station for 1-2 days before you put things away, sure, no problem. You also can simply wipe things off before they come in to your house – that is fine is fine too. For an isolated family, it makes no sense to obsessively wipe down every surface every day (or several times a day). Door knobs, toilet handles, commonly trafficked light switches could get a wipe off each day, but it takes a lot of time and emotional energy to do all those things and they have marginal benefits. We don’t need to create a sterile operating room-like living space. Compared to keeping your hands out of your mouth, good hand hygiene, and cleaning food before serving it, these behaviors might be more maladaptive than protective.
  5. There are few absolutes, so please get comfortable accepting some calculated risks, otherwise you might be isolating yourself for a really, really long time. Figure out how you can be in public and interact with people without fear.

We are social creatures. We need each other. We will survive with and because of each other. Social distancing just means that we connect differently. Being afraid makes us contract and shut each other out. I hope we can fill that space created by fear and contraction with meaningful connections and learn to be less afraid of each of other

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Phoenix Arizona Feb 2020

Schizophrenia Symptoms

Examples of Physical Symptoms:

  • A blank, vacant facial expression. An inability to smile or express emotion through the face is so characteristic of the disease that it was given the name of affective flattening or a blunt affect.
  • Overly acute senses- lights are too bright, sounds are too loud.
  • Staring, while in deep thought, with infrequent blinking.
  • Clumsy, inexact motor skills
  • Sleep disturbances- insomnia or excessive sleeping 
  • Involuntary movements of the tongue or mouth (facial dyskinesias). Grimacing at the corners of the mouth with the facial muscles, or odd movements with the tongue.
  • Parkinsonian type symptoms- rigidity, tremor, jerking arm movements, or involuntary movements of the limbs 
  • An awkward gait (how you walk)
  • Eye movements- difficulty focusing on slow-moving objects 
  • Unusual gestures or postures 
  • Movement is speeded up- i.e., constant pacing
  • Movement is slowed down- staying in bed (in extreme cases, catatonia) 

Examples of Feelings/Emotions:

  • The inability to experience joy or pleasure from activities (called anhedonia)
  • Sometimes feeling nothing at all
  • Appearing desireless- seeking nothing, wanting nothing 
  • Feeling indifferent to important events
  • Feeling detached from your own body (depersonalization)
  • Hypersensitivity to criticism, insults, or hurt feelings

Examples of Mood:

  • Sudden irritability, anger, hostility, suspiciousness, resentment
  • Depression- feeling discouraged and hopeless about the future 
  • Low motivation, energy, and little or no enthusiasm 
  • Suicidal thoughts or suicidal ideation 
  • Rapidly changing mood- from happy to sad to angry for no apparent reason (called labile mood) 
  • Severe Anxiety

 Changes in Behavior associated with schizophrenia:

  • Dropping out of activities and life in general 
  • Inability to form or keep relationships 
  • Social isolation- a few close friends, if any. Little interaction outside of the immediate family.
  • Increased withdrawal, spending most of the days alone.
  • Becoming lost in thoughts and not wanting to be disturbed with human contact 
  • Neglect in self-care- i.e., hygiene, clothing, or appearance
  • Replaying or rehearsing conversations out loud- i.e., talking to yourself (prevalent sign) 
  • Finding it difficult to deal with stressful situations
  • Inability to cope with minor problems 
  • Lack of goal-directed behavior.

Not being able to engage in purposeful activity 

  • Functional impairment in interpersonal relationships, work, education, or self-care
  • Deterioration of academic or job-related performance 
  • Inappropriate responses- laughing or smiling when talking of a sad event, making irrational statements.
  • Catatonia- staying in the same rigid position for hours, as if in a daze.
  • Intense and excessive preoccupation with religion or spirituality
  • Drug or alcohol abuse
  • Smoke or have the desire to want to smoke (70-90% do smoke) – note: this is a very typical behavior for people who do not have schizophrenia also!
  • Frequent moves, trips, or walks that lead nowhere 

Examples of Cognitive Problems Associated with Schizophrenia:

  • Ruminating thoughts- these are the same thoughts that go around and around your head but get you nowhere. Often about past disappointments, missed opportunities, failed relationships.
  • Making up new words (neologisms)
  • Becoming incoherent or stringing unrelated words together (word salad)
  • Frequent loose association of thoughts or speech- when one thought does not logically relate to the next. For example, “I need to go to the store to buy some band-aids. I read an article about how expensive AIDS drugs are.   People take too many street drugs. The streets should be clean from the rain today, etc.” The need to go to the store to buy band-aids is forgotten.
  • Directionless- lack goals, or the ability to set and achieve goals
  • Lack of insight (called anosognosia). Those who are developing schizophrenia are unaware that they are becoming sick. The disease damages the part of their brain that should recognize that something is wrong.
  • Racing thoughts
  • In conversation, you tend to say very little (called poverty of speech or alogia) 
  • Suddenly halting speech in the middle of a sentence (thought blocking)
  • Trouble with social cues- i.e. not being able to interpret body language, eye contact, voice tone, and gestures appropriately.
  • Often not responding appropriately and thus coming off as cold, distant, or detached.
  • Difficulty expressing thoughts verbally. Or not having much to say about anything.
  • Speaking in an abstract or tangential way. Odd use of words or language structure 
  • Difficulty focusing attention and engaging in goal-directed behavior
  • Poor concentration/ memory. Forgetfulness 
  • Nonsensical logic
  • Difficulty understanding simple things
  • Thoughts, behavior, and actions are not integrated
  • Obsessive-compulsive tendencies- with thoughts or actions
  • Thought insertion/ withdrawal- thoughts are put it or taken away without a conscious effort
  • Conversations that seem profound, but are not logical or coherent 

Examples of Delusions:

The most common type of delusions or false beliefs is paranoid delusions.

These are persecutory in nature and take many forms:

  • Overpowering, intense feeling that people are talking about you, looking at you
  • Overpowering, intense sense you are being watched, followed and spied on (tracking devices, implants, hidden cameras) 
  • Thinking that someone is trying to poison your food 
  • Thinking people are working together to harass you 
  • Thinking that something is controlling you- i.e. an electronic implant
  • Thinking that people can read your mind/ or control your thoughts 
  • Thinking that your thoughts are being broadcast over the radio or tv
  • Delusions of reference- thinking that random events convey a special meaning to you. An example is that a newspaper headline or a license plate has a hidden meaning for you to figure out. That they are signs trying to tell you something.
  • Religious delusions- that you are Jesus, God, a prophet, or the antichrist.
  • Delusions of grandeur- the belief that you have an important mission, special purpose, or are an unrecognized genius, or famous person.
  • Delusions that someone, often a famous person, is in love with you when in reality, they aren’t. Also called erotomania or de Clerembault syndrome.

Examples of Hallucinations:

  • Hallucinations are as real as any other experience to the person with schizophrenia. As many as 70% hear voices, while a lesser number have visual hallucinations.
  • Auditory hallucinations can be either inside the person’s head or externally. When external, they sound as real as an actual voice. Sometimes they come from no apparent source; other times, they come from real people who don’t actually say anything; other times, a person will hallucinate sounds.
  • When people hear voices inside their heads, it is as if their inner thoughts are no longer alone. The new voices can talk to each other, talk to themselves, or comment on the person’s actions. The majority of the time, the voices are negative.
  • Visual hallucinations operate on a spectrum. They start with the over acuteness of the senses, then in the middle are illusions, and on the far end are actual hallucinations.

Disclaimer: The following symptoms overlap with many other diseases such as bipolar disorder, major depression, the various kinds of personality disorders (specifically paranoid and schizotypal personality disorders), and other problems such as brain tumors and temporal lobe epilepsy. There is no “typical” case of schizophrenia. Everyone has different symptoms. Seek the opinion of your doctor always.

Moreover, it is always essential to keep the big picture in mind. Having just a few of these symptoms does not necessarily mean that a person has schizophrenia or any other sort of psychiatric disorder. Almost all of the signs below can be present to a “normal” degree in people; it is when someone displays them to a significant degree that they can become psychiatric symptoms. Think of all of these behaviors as being on a continuum, in which the middle 99% of people displaying varying degrees of the behavior but are still within the “normal” range. The 1% of people on the outer edges have the behaviors in extreme proportion, and/or a significant proportion of the time, and that is when they can become debilitating.

A diagnosis of schizophrenia requires that continuous disturbance (i.e. debilitating symptoms) be present for at least six months, including at least one month of specific key symptoms (active symptoms: delusions, hallucinations, disorganized speech, disorganized/catatonic behavior, negative symptoms such as severe emotional flatness or apathy)