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
See more surprising schizophrenia statistics, including:
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.
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.
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.
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
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.
After reading the new policy, we came up with some strategies families can utilize to improve the chances of getting a decent Behavioral Health Residential Facility (BHRF) referral and preventing losing your spot in line for BHRF. Always keep accurate, detailed notes; we cannot emphasize this enough.
Work with the clinical team who completes and submits the application to ensure that the following information is in the form. Specificity Matters!!
List all previously failed BHRF programs.
List your geographical preference, so the family and or support system remains intact.
List any areas that can be triggers or traumatic for the member.
List any allergies.
Cannot navigate stairs.
List any other details pertinent to social living (cannot tolerate animals, better with same sex housemates and/or roommates, etc.)
Have you experienced losing your place in line for a BHRF due to either re-hospitalization or refusal of a BHRF placement? If so, please tell us about your experience:
http://www.MercyCareAZ.org June 19, 2020 New Process – Adult Behavioral Health Residential Facilities (BHRF) prior authorization Applicable to: Mercy Care Complete Care, Mercy Care RBHA and Mercy Care DD Effective Monday June 29th, 2020, Mercy Care is implementing new processes for Adult Behavioral Health Residential Facilities (BHRF) Prior Authorization requests and approvals. Approved prior authorizations will be valid for 30 days from the date of determination. After that period, a new prior authorization request with current clinical information must be submitted.
Mercy Care respects member choice and will support all available options. However due to the treatment level of care required, there may not be a treatment provider available that has all of the members’ preferences. If a member and/or guardian declines treatment when an available BHRF has been offered, it will be considered a withdrawal of the request for services. If a member in the community already approved for a BHRF admits to a higher level of care, such as a behavioral health inpatient hospital or sub-acute facility, the BHRF approval will be closed and a new application for BHRF will need to be submitted with current clinical information.
Provider must fax in the admission face sheet with a minimum of member name, DOB, AHCCCS ID, facility name and address, Level of Care (BHRF), Admit date and primary diagnosis to Mercy Care AZ Utilization Management Department Fax # 855-825-3165. As always, don’t hesitate to contact your Mercy Care Network Management Representative with any questions or comments. You can find this notice and all other provider notices on our Mercy Care website.
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.
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:
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.
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.
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.
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!).
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.
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