JEFFREY STOVALL, MD, is a psychiatrist and specialist in psychotic disorders. He is a professor of psychiatry and behavioral sciences medicine and part of the Psychotic Disorders Program at Vanderbilt University. He works with numerous HD patients referred from the Vanderbilt Huntington Disease Center of Excellence, managed by our editor, Daniel Claassen, MD. Stovall has worked in community psychiatry, in primary medical settings. He has served as consultant in evaluating refugees for asylum and with the U.S. Department of Justice and the Substance Abuse and Mental Health Services Administration. His areas of academic interest include the development and outcomes of community-based systems of care for individuals with severe mental illness and schizophrenia.
In keeping with our theme of expanding access to care, we had a conversation with Dr. Jeffrey Stovall about a common barrier to care for too many people with HD — running afoul of the law — and the reasons illegal acts are often interpreted out of the context of the disease. Finally, we talked about systemic improvements needed to help prevent the diversion of people with HD down the insidious pathway of arrest, jail and prison.
Q: Dr. Stovall, you see many patients with HD in your office every year. What have you learned from these sessions, and from the research, about the types of offense people with HD may be accused of committing or actually commit?
A: I see many patients, of course, whose symptoms do not lead them to illegal behaviors. But because HD can strongly impact the executive function of the brain, I do see many patients who experience impulse control problems, or disinhibition. These often manifest in alcohol or drug abuse, sexual misbehavior, financial or driving recklessness, and sometimes aggression or violence toward family members and others. These are behaviors that can lead to an illegal act and arrest. Not surprisingly, men are more often arrested than women, because of social and cultural differences, physiological differences, and the different response police may have to a woman’s angry behaviors. Women are also less likely to have substance abuse problems compounding the HD symptoms.
Q: Would you walk us through what happens when an individual with HD is apprehended for a crime?
A: If the police officer does not understand that the person has a neurological or other mental illness, the person is more likely to goes through the legal system, leading to incarceration. In this scenario, people with HD are just the tip of the iceberg consisting of people with various mental illnesses in our prison system. Interventions can prevent this, thankfully. New information from the family or a physician may shed light on the patient’s condition, driving a diversion to mental health court instead, if the city or county has such a system. In these cases, they are led into an integrated part of the legal system that includes mental health assessments and treatment.
So instead of jail for a year, they may have their case continued for a year, during which they are expected to get mental health treatment. The idea is that once they get treatment they won’t need to go to trial or be punished. Basically, this is acknowledging that the person did something illegal because they were ill, not because they are a criminal. Unfortunately, these parallel court systems are not consistently in place across the country, particularly in rural counties. What would ideally happen, and does at times, is that the police officer has reason to know from the start that the person has HD, that his or her actions are part of the disinhibition that can be symptomatic of HD or another mental illness. This requires that the person or a relative informs them at the time of apprehension. Often, that is tough to do because symptoms of a mental illness often predate more classic motor symptoms of HD.
Q: Are people ever tested for mental illness or even for a disease like HD after arrest?
A: My experience is that by the time they are arrested, the world is moving pretty fast. Without a pre-existing diagnosis, it is unlikely that it will be brought into play.
Q: You mentioned that HD is the tip of the iceberg. Why are so many people with mental illness incarcerated?
A: Back in the 1960s, our asylum system was dismantled and patients were guided into community-based programs, residential and other. The problem is that community based services have not been developed that meet the needs of individuals with serious mental illness. In the meantime, available inpatient psychiatric beds dropped precipitously. So people who were historically hospitalized and getting treatment were released into the community. In theory they were going to get community support and treatment, but the majority did not get anything close to what they needed. Now, this trend is associated with a marked increase of people who are incarcerated who have severe mental illness. We know that of the people who are incarcerated now, about a quarter have a history of mental illness. And we also know that if individuals who are arrested for a particular offense have a mental illness, they have about a 50 percent higher rate of being incarcerated than someone without a mental illness committing the same offense, which speaks to their relative inability to build a good defense in court.
Q: So, regarding people with HD, getting a diagnosis and treatment before disinhibition behaviors escalate takes on an extra urgency.
A: Absolutely. Katherine McDonell, a neurologist who works with Daniel Claassen, is doing studies that are putting put more detail around this need. She did a chart review of close to 300 HD patients looking at their arrest records. Clearly, there are a disproportionate number of arrests among HD patients versus patients without HD. Most commonly it is physical violence that leads to these arrests, and often before HD has been diagnosed.
Q: Is the physical violence a standalone problem or typically in conjunction with substance abuse?
A: The data from this study doesn’t include that, but anecdotally, we often see a chain from anxiety or depression to substance abuse to irritability and violent acts. If we can start addressing the anxiety and depression early, it may effectively stem the tide. Once the police are involved in an incident, the sooner the officer understands that the person may be experiencing symptoms of an illness, the more likely it is that the individual with receive medical treatment and not legal punishment.
Q: This is another argument for working to expand awareness, diagnosis and care, to reach people in the shadows who are not educated about HD, or who live in a culture of shame or denial about it.
A: I see so much of this in my practice. I treat people who now know they have or are at-risk for HD. But when I ask them if anyone in their family has had a psychiatric illness they may say, “no… but my uncle was in prison for killing somebody, and my father died because he was in a high-speed motor vehicle accident.” They don’t necessarily connect the dots back to HD.
Q: How does our healthcare system help or hinder early diagnosis and treatment needed to prevent incarcerations?
A: Insurance is obviously the number one thing that enables or prevents people from seeking diagnosis and care. Particularly for single men for whom Medicaid is not typically an option in some states, the lack of any insurance is a huge barrier. Outpatient community care is historically underfunded. Then there is the issue of fragmented care that hinders important collaboration between providers. If people do have insurance, they usually have a separate system for their mental health benefits. With HD, you have what is both a neurological and a psychiatric illness, yet the providers for these two service areas are typically not part of the same system. A third problem is that even for patients who have access to psychiatry in freestanding mental health clinics, most of the population psychiatrists and advanced practice nurses working there may not be adequately trained to treat or perhaps even recognize HD.
Q: What would diagnosis and care offerings look like in a near-perfect world?
A: There would be insurance and there would be integrated care. And, for individuals who interface with the legal system, there would be mental health courts that focus on treatment and not punishment. People may recognize that there is something going on, that they are depressed, that they are irritable, that they are drinking too much. Without insurance, they are not going to go get treatment. Without insurance, nothing else is going to happen. Substance abuse treatment needs to be more widespread, accessible, and more integrated into the rest of the healthcare system. We need to do a better job of recognizing that psychiatric symptoms in patients with HD may predate the onset or diagnosis of that illness. Among at-risk people and their families, having that education up front so that they have eyes to recognize, to think, “I have a family member with HD, so I or they may be at increased risk of having psychiatric problems. It might be useful to get treatment for that sooner than later because we know there are bad consequences that come with that, and treatment can help.” This is something we try to do through HD clinics and organizations that provide support and advocacy for individuals and their families with HD.
We need a system where psychiatry, neurology and primary care are talking to one another. The Huntington’s disease program at Vanderbilt, for example, works because it focuses on the disease. HD patients are referred to me, then I see them and refer them back to the neurologist and primary care provider. We are all talking amongst ourselves. In a better system, more insurance plans would allow patients to be in an integrated system of care so they can move freely among providers who are all in the same loop. When you don’t have these things, or they are fragmented, it takes more resources to get things done than in an integrated system. Historically, mental health care and substance abuse treatment outside the medical system has been fragmented. So you are more likely to have individuals within both of these systems who may not be as thoroughly medically trained. Part of our medical training as physicians is learning to search wide and far for what may be causing the pain or symptoms, so appropriate providers for rare diseases like HD need to be more readily available. Finally, in the psychiatry field, it is critical that we keep improving our own education and recognizing the prevalence of neurological disorders that may be associated with some of the psychiatric symptoms.
Assessing Risky Behavior
Katherine E. McDonell, MD, a cognitive neurologist at the Huntington Disease Center of Excellence at Vanderbilt University Medical Center, recently conducted retrospective studies on HD patients and risky and/or criminal behaviors. McDonell and clinical research coordinator Brittany Brown reviewed the electronic medical records of 289 patients who had a genetic diagnosis of HD between 2006 and 2020, and found 11 percent had a history of criminal behavior. The average age at which these behaviors occurred was 37 years old. She also asked 60 patients and their caregivers to complete a Risk Behavior Questionnaire (RBQ-HD). Eighty percent of patients and 91 percent of caregivers reported at least one dangerous behavior. Impulsive/compulsive behaviors and reckless driving were among the top reported, with hypersexuality, verbal and physical altercations, and drug abuse also commonly reported. All these behaviors were more prevalent in young men than women (92.3% vs. 70.6%) and negatively correlated with age. McDonell wants to see more people at risk for HD in the clinic earlier, before such premanifest psychiatric symptoms may arise. “Recognizing these behaviors early and identifying the factors that may lead to them will help us better target therapies such as counseling, addressing family and social stressors, providing resources, and prescribing appropriate medications,” McDonell said. At the same time, she is encouraged by one trend in the right direction. She says more young people from HD families are coming in after hearing about promising research. “They want to know what their options are, and many want to be involved in clinical trials,” she said. This may be one significant vector for bringing HD into the daylight.