Muffy Walker gave an inspirational talk at the 2014 meeting of the International Society for Bipolar Disorders about the International Bipolar Foundation (IBPF, formerly known as the California Bipolar Foundation) she started with three other mothers of children with bipolar disorder. The organization advocates for better understanding and treatment of the illness in children. Treatment is too often delayed and insufficient, as was the case with Walker’s son, who started having trouble at age four and was diagnosed with post-traumatic stress disorder (PTSD), oppositional defiant disorder (ODD), attention-deficit hyperactivity disorder (ADHD), and conduct disorder (CD) before he became severely manic while taking the antidepressant fluoxetine (Prozac). The foundation has a monthly e-newsletter. Their website is http://ibpf.org.
In 2013 we described a speech given by Congressman Patrick J. Kennedy about the need for parity in care for people with mental illnesses. In late 2013, Health and Human Services Secretary Kathleen Sebelius issued a final rule on the Mental Health Parity and Addiction Equity Act of 2008, effectively requiring that health insurance coverage for mental health and substance abuse treatment be comparable to coverage of physical ailments.
The rule was prompted in part by mass shootings that were linked to mental health patients. Sebelius announced the new rule at a press conference with former first lady Rosalynn Carter, who has been a supporter of mental health research for decades.
According to the New York Times, state insurance commissioners will need to enforce the new rule, and more money may be required to fund behavioral health clinics.
This historic milestone may allow patients to get medical care they had previously been unable to afford.
Among the hundreds of posters, workshops, clinical perspectives, and symposia presented over five days at the 2013 meeting of the American Academy of Child and Adolescent Psychiatry (AACAP), there were almost no posters or presentations on new approaches to treatment (either with drugs or therapy) for children with bipolar disorder.
As we have repeatedly emphasized in the BNN and in research publications, this deficiency has adverse consequences for the many hundreds of thousands of children and adolescents in the US with unequivocal diagnoses of bipolar disorder. Suicide is now the second leading cause of death in adolescents 13 to 17 years of age in the US. Most of these young people have a mood disorder. Bipolar disorder carries with it not only a substantial risk of suicide, but also the potential for a lifetime of dysfunction, disability, and medical comorbidity if it is inadequately treated.
Please advocate for more treatment research for childhood onset bipolar disorder. A whole generation of children, their parents, and their physicians desperately need more treatment information.
The psychiatric community has been preparing for the 2013 release of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) by the American Psychiatric Association for years. Each new edition of the manual reflects changing conceptions of illnesses and their diagnosis and treatment.
Tom Insel, the director of the National Institute of Mental Health (NIMH), the largest research organization in the world devoted to the understanding and treatment of mental disorders, caused a stir this past spring when he wrote in a blog post that the DSM-5 lacks validity and that patients deserve better.
The DSM-5 guidelines for diagnosis of mental disorders rely on descriptions of clusters of symptoms, and Insel suggested that new methods of diagnosis that rely on laboratory measure should be developed. The NIMH is launching a project called Research Domain Criteria (RDoC) to incorporate genetics, imaging, and other data in a new classification system for illnesses, and is re-orienting their funding toward projects that “look across current categories,” for example by including all patients in a mood disorder clinic rather than only those who meet DSM-5 criteria for major depressive disorder.
A major concern about this change at the NIMH, which funds much of the research that leads to Federal Drug Administration-approved treatments, is that it will diminish funding for treatment studies in specific diagnostic categories where research is already sparse, such as childhood onset bipolar illness. This may leave many children and adults without a sound evidence base upon which their doctors can base treatment decisions.
Under the NIMH’s new rubric, clinical treatment studies to collect comparative data and evidence-based treatment research would likely lose out to studies focused on the broad collection and identification of biomarkers and the pursuit of new treatment targets. Answering an important clinical question such as whether symptoms of childhood onset bipolar disorder respond to the same medications as oppositional defiant disorder (ODD) or disruptive mood dysregulation disorder (DMDD) might not be a high priority for study.
David Kupfer, chair of the APA’s DSM-5 Task Force, responded to Insel’s statement saying that while it would be great to identify biomarkers and genetic indicators for mental illnesses, “this promise, which we have anticipated since the 1970s, remains disappointingly distant.” Insel acknowledged in his statement that this is only the beginning of development of research domain criteria, and that “for the present” the DSM will continue to be used.
At the 10th International Conference on Bipolar Disorders in 2013, Congressman Patrick J. Kennedy addressed the combined audience of the Depression Bipolar Support Alliance (DBSA) and members of the International Society of Bipolar Disorders. He gave an inspiring speech about de-stigmatizing advocacy, and the need to have a unified message that promotes parity in the care of mental illnesses and physical illnesses. He suggested that mental disorders should be compared to heart attacks, with the mantra, “We want no more, and we should demand no less.”
Kennedy revealed his own dual diagnosis of bipolar disorder and alcohol abuse and the need to come out of the shadows, such as the basements of churches where people seeking treatment from Alcoholics Anonymous all too often remain unknown and anonymous.
Kennedy framed the issue of parity in the care of mental illnesses as a new civil rights battle. People with mental illness have been grossly discriminated against, stigmatized with derogatory epithets, and treated with indignity in the past. He stressed the need for all to advocate not so much for themselves, but for others, and to join in community to solve our current problem of isolation and alienation.
Kennedy indicated optimism for the parity mission and suggested that a good way to achieve it would be to join forces with another isolated group of young people—veterans returning from Iraq and Afghanistan. While many veterans return with brain injuries and post-traumatic stress syndrome (PTSD), seventy-two percent of veterans never go to the Veteran’s Affairs hospitals, many are ignored, and too many are locked up in prisons. Kennedy called them “prisoners of their war injuries” and “walking prisoners of war.” Twenty-two die each day by suicide.
Kennedy said we in the mental health community must stand with them and their hidden brain injuries. They are wounded, but they never receive a purple heart. He quoted a speech his uncle Robert F. Kennedy gave in Cape Town, South Africa in 1966 before anyone thought that apartheid would end. “It is from numberless diverse acts of courage and belief that human history is shaped. Each time a [person] stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, [that person] sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.”
In the mental health community we need each other and can’t afford different messages or fragmentation. Mental health advocates joining with veterans and their search for good care will be our salvation, as will our connectedness, togetherness, mutual respect, and these will yield solutions for both groups.
The National Alliance on Mental Illness (NAMI) conducted a survey to determine ways that primary care providers can better communicate with parents about a child’s mental illness. In a news release NAMI executive director Michael Fitzpatrick said, “Most Americans rely on family doctors and pediatricians for early detection of mental illness and in many cases treatment.”
NAMI concluded that primary care providers could play a larger role in detecting mental illness in children. They found that in 63% of families, the first signs of behavioral or emotional problems were evident in children by age 7. More than half of families reported that their primary care physicians were not knowledgeable about mental health treatments. Almost two-thirds of families reported that their primary care providers were not knowledgeable about local resources to support families with mentally ill children.
NAMI’s suggestions for primary care providers included educating themselves about early-onset mental illness and local resources for families, providing screening tools for parents and youth in order to encourage discussion of mental health, emphasizing that mental health is as important as physical health to a child’s wellbeing, asking questions about mental health as a routine part of office visits, and listening to families’ concerns without judgment.
Primary care providers are also encouraged to let families know that there is hope and that they are not alone in facing this difficulty, that mental illness in a child is not the parents’ fault, and that their children have many strengths.
Primary care doctors should also be prepared to: refer a mentally ill child to psychiatrists, psychologists, and other specialists if needed; follow up, including collaborating with other healthcare providers to develop and implement a treatment plan; and encourage patients and their families.
Multiple factors make childhood-onset bipolar disorder a difficult problem for affected children and families. Early onset is common, and treatment is often delayed or inappropriate. It takes an average of nine months to achieve remission, and relapses are common. In studies children have remained symptomatic for an average of two-thirds of the time they receive naturalistic follow up treatment, and the illness impairs social and educational development. Episodes and stressors tend to accumulate, and substance abuse is a frequent complication. Dysfunction and disability occur at a high rate among children with the illness, and suicidal ideation and acts are common.
When we surveyed adults in our treatment network, the Bipolar Collaborative Network (BCN), about the history of their illness, we found that the duration of the time lag between illness onset and first treatment was independently related to a poor outcome in adulthood. A longer delay to first treatment was associated in adulthood with greater depression severity, more days depressed, fewer days euthymic, more episodes, and more ultradian cycling (or cycling within a single day). Because treatment delay is a risk factor that can be avoided or prevented, efforts should be made to initiate treatment early in the course of bipolar illness. Read more
An article by Geller et al. in Bipolar Disorders last year illustrates the crisis in the treatment of childhood-onset bipolar illness in the US. The article indicates that almost 40% of the children with a credible diagnosis of bipolar disorder in this study never received anything near the appropriate treatment for their illness.
It is unfortunate when children fail to receive appropriate treatment because of ambiguity about a diagnosis, but it is even more frustrating when one of the world’s experts makes a diagnosis, and a child still fails to receive treatment based on consensus guidelines.
Over 8 years of follow-up treatment in their communities, these very ill children not only did not receive helpful drugs such as atypical antipsychotics or mood stabilizers, but they often received treatments that can be counterproductive, such as antidepressants or psychomotor stimulants. Those children who did receive appropriate treatment with lithium fared better and recovered significantly earlier than the others. Read more
It was remarkable that at the Pediatric Bipolar Conference hosted by Massachusetts General Hospital (MGH) and the Ryan Licht Sang Bipolar Foundation this past March in Cambridge, Massachusetts, none of the plenary talks, although they were excellent and given by leaders in the field of child psychiatry, dealt directly with the topic of the conference–childhood-onset bipolar disorder. There were also no reports of systematic placebo-controlled clinical trials evaluating treatment approaches in any of the subsequent presentations or posters. A number of open and uncontrolled studies examined new treatment possibilities.
It is notable that the National Institute of Mental Health (NIMH) no longer sponsors this conference, as it did for many years. Moreover, STEP-BD, an NIMH-sponsored research program on the course and treatment of adult-onset bipolar disorder, is now defunct, and the head of STEP-BD and one of the most productive researchers in bipolar illness, Andrew Nierenberg from the MGH, has been forced to search for other funding opportunities.
These developments highlight the ongoing deficient funding and study of both childhood-onset and adult-onset bipolar disorder despite the enormous public health impact, extraordinary morbidity, and early mortality from suicide and medical illnesses like cardiovascular disease that are associated with these disorders.
The Child and Adolescent Bipolar Foundation (CABF) has launched a campaign for votes to win the Pepsi Refresh Project and a $250,000 grant to aid families and children living with bipolar disorder and depression. CABF has been chosen to compete for the top grant during the month of November. Winners are decided by total votes cast via Internet and text messages throughout the month.
If selected by popular vote, CABF will use an innovative
social media awareness effort to:
- Elevate awareness about bipolar disorder & depression in children;
- Educate parents & the public about the symptoms;
- Explain the best treatment options & ways to reduce teen suicide;
- Expand the number of children receiving treatment;
- Eliminate the stigma associated with mental illness;
- Extend hope to families struggling with mental illnesses.
Supporters can vote for CABF 3 times a day, once from
each of the following sources: