How Advocacy is Bringing
Borderline Personality Disorder
Into the Light
By Valerie Porr
The omission of BPD from sentinel epidemiological studies created a cascade of effects resulting in BPD receiving minimal attention commensurate with the magnitude of the population affected by the disorder. Its frequent misdiagnosis and omission from studies may be attributable to the lack of an easily administered structured diagnostic interview capable of generating reliable psychiatric diagnoses in community and public health settings. Placement on Axis II in the DSM-IV, the confusing name of the disorder and its comorbidity with other illnesses such as substance abuse, eating disorder, or PTSD appear to be contributing factor in the under service and under recognition of BPD as a severe and disabling disorder. Because of its overlap with other disorders, evaluation of BPD research is difficult and requires a very flexible multidisciplinary evaluation process. Support services for consumers and families are woefully inadequate. The public is generally unaware of the disorder due to the paucity of educational materials available from various mental health organizations. No celebrity has yet come forward to put a face on BPD, probably because BPD is the most stigmatized of all mental illnesses. today. BPD accounts for some. of the nations major public health problems. Advocacy, until recently nonexistent, is bringing BPD into the light.
Borderline personality disorder (BPD) may be among the most stigmatized of mental disorders. It is often undiagnosed, misdiagnosed, or treated inappropriately. Clinicians may limit the number of BPD patients in their practice or drop them as ''treatment resistant.''
Because of its classification as an Axis II disorder, BPD is excluded from many managed care and healthcare plans, and most parity bills. Consumer and family support groups are virtually nonexistent. Family members are often blamed for the illness.
The International Society for the Study of Personality Disorders lists its members by state. Some states list only one BPD researcher or clinician, others just 2 to 5. Considering that the estimated BPD prevalence is 2% to 3% of the general population (5 to 6 million people), this number of treatment professionals is inadequate. Why is BPD the recipient of such professional disregard? We put forth the hypothesis that lack of advocacy for BPD left its sufferers without a public voice. A public personality has not stepped forward to declare that he or she suffers with BPD. Without a public face or a voice, BPD has been invisible. The Treatment and Research Advancements Association for Personality Disorder (TARA APD) has become the voice for BPD; our advocacy is bringing BPD into the light.
What is TARA APD?
TARA APD, founded in 1995, is the only national nonprofit educational and advocacy organization for BPD. Our mission is to raise public awareness of BPD, increase research funding, and ensure availability of evidence-based treatment and translation of research findings into practice. TARA APD maintains a national helpline (1-886-4-TARA APD) and a resource and referral center. To raise awareness, we sponsor workshops and symposia at conferences across the nation. Our affiliates provide family education and support groups. We actively advocate for increased funding for BPD research and treatment on Capitol Hill and with local, state, and federal. agencies concerned with this patient population. Dyer the past 6 years, TARA has identified issues that may have impeded research and treatment advancements. Although some. of these issues are. endemic to all mental illnesses, others are specific to BPD.
Many of our observations come through information garnered from our national helpline, our support groups, and our active participation in the research community. Although it is generally held that BPD is a woman's illness, that perception depends on where you look. Although there may be more women with BPD seeking treatment in private practice; many man with BPD can be found in prison, incarcerated for impulsive aggression or domestic violence.
Prevalence Of BPD
Most discussions of prevalence and costs of psychiatric disorders are based on the National Comorbidity Study (NCS), the 1990 survey of psychiatric disorders in the United States.¹ BPD, as an Axis II disorder, was omitted from this study, and therefore solid prevalence data are lacking. This omission may have hindered BPD research funding from keeping pace with other mental illnesses. Knowledge of prevalence guides funding for new treatment trials, research, and new training programs. The reason given for the omission was that an easily administered structured diagnostic interview capable of generating reliable psychiatric diagnoses in general populations that met NCS requirements was not available for BPD.
In 1999, Kessler was developing a new survey of psychiatric disorders to include 10,000 people in 20 countries. Unfortunately, BPD would again be omitted for the same reason. TARA's advocacy efforts went into high gear. Dr. Kessler, working with Drs. Mark Lenzenweger and Armand Loranger, developed a short form adaptation of Dr. Loranger's International Personality Disorder Examination (PDE), which will be administered by computer while the longer form will be used for validation. BPD is now included in the international survey: For the first time, solid international BPD prevalence rates will be available.
At present there are more than 15 assessment methods available, each measuring a different aspect of BPD behavior, either categorically or dimensionally. Some are complex and cumbersome, others overly simplistic and imprecise. The most reliable use semistructured interviews.² Difficulty in assessment contributes to exclusion of BPD from many research protocols that may actually include this population. We need innovative development of a short, easily administered, and easily scored BED diagnostic screen that will be widely accepted in the community. This tool could make a BPD screening day a reality. We could then identify the scope of services needed and approach legislatures for parity and managed care companies for mote equitable insurance coverage.³
Many insurance companies and managed care providers exclude coverage of Axis II disorders. Clinicians, aware that a person meets criteria for BPD, often substitute an Axis I diagnosis such as major depression, bipolar disorder, and/or posttraumatic stress disorder, which are reimbursable. At the 2001 American Psychiatric Association (APA) conference in New Orleans, the APA assembly passed a resolution to explore changing the name of BPD and changing the Axis from II to I. The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders will look at these issues. TARA supports this change and is actively advocating for its passage.
The name BPD is confusing, imparts no relevant or descriptive information, and reinforces existing stigma. We believe that BPD should be refrained onto a spectrum of its core components-impulsivity and emotional dysregulation. Callers to our helpline consistently express their frustration with the name BPD.
Availability of BPD Public Information
TARA is the only national organization producing extensive public information on BPD. We receive referrals from the National Institute of Mental Health (NIMH), National Alliance of the Mentally Ill (NAMI), the National Mental Health Association, the DANA Alliance for Brain Disorders, and most other mental health organizations. In response to our requests, the NIMH produced its first public information on BPD for its "Science on Our Minds" series and Web site.
To fill the informational, void, every caller to our helpline receives a packet that gives information on epidemiology, symptoms, treatment options, comorbidity issues, personal experiences, and advocacy. As TARA President, I participated in National Public Radio's "Infinite Mind" broadcast on BPD in November 1999 with Marsha Linehan, PhD, and I also coedited the BPD issue of the Journal of the California Alliance of the Mentally Ill featuring 33 articles on BPD.
Grassroots advocacy cannot develop when the public is not informed. Families have been discouraged from attending leading BPD research conferences. Family members who would attend are the ones who visit and write NIMH and congressional representatives, advocating on both national and local levels for research and treatment funding. The more these family members know of latest advancements, the better equipped they are to further the aims of researchers and clinicians. These family members will build consensus in the community for implementation of BPD guidelines. We hope that professionals who treat those with personality disorders will welcome us and help us raise public awareness of BPD.
Availability of Research Funding
TARA sent a Freedom of Information Act request to NIMH. We wanted to know the percent or amount of the Fiscal Year (FY) 2001 budget designated for BPD research. The response revealed that, of the more than 1 billion dollars NIMH received for FY 2001, less than 1% was designated for personality disorder (PD) research. And, out of this 1%, less than .5% of the PD research portfolio was earmarked for BPD. By comparison, depression. received 13.7% or $140 million dollars for FY 2001.
How can we make advances in understanding BPD and in developing more effective, treatments with so little research funding? TARA advocates on Capitol Hill for increased National Institutes of Health and NIMH funding: with a specific allotment for BPD. Our visits have been positively received by the members of the Senate and House Appropriations Committees, that authorizes funds for the NIMH.
At the June 15, 2001, NIMH Scientific Roundtable in Washington, DC, Dr. Steve Hyman, director of NIMH, stated that, "at the present time, 5% of patients with mental illness have access to evidence-based treatment in their community." What is the process by which effective treatments are disseminated into practice? At present, any therapist can take a new treatment and practice it in whatever way he or she chooses, in essence treatment "my way." Participants at the August 2000 Surgeon General's Conference on Children and Adolescents concluded that one of the principal reasons evidence-based treatment was not implemented in the community was because of "my way" treatment methodology. We believe there is insufficient oversight of individual therapists as well as of community agencies in the mental health system.
The Substance Abuse and Mental Health Services Administration (SAMHSA) funds community action grants. Through this extremely helpful program, funds are allocated to develop consensus for the initiation of evidence-based treatment in a community. The grant takes approximately 1 year from application to funding; consensus building generally takes 1 to 2 years. The community must then find funding for the training and implementation of the treatment. This can take an additional 1 to 2 years. This process raises many questions. How many community action grants are available for the nation? Are there enough people in communities knowledgeable enough about the treatment needed for persons with BPD and with the skills and perseverance to apply for these grants? What do the persons with the disorder and their families do in the interim? What treatment is offered while we wait for consensus to be built and for treatment to be implemented? Are we being too patient?
Are developers of an effective treatment responsible for its dissemination, for assessing adherence to the original model, or for clinical trials? If so, can they still devote time to clinical practice and further research? Who is responsible for funding training in new evidence-based treatments?
Under the guidance of Dr. John Oldham, the APA has developed Best Practice Guidelines for BPD. Despite reservations, we are grateful for this start in legitimizing BPD and standardizing treatment. We particularly welcome the psychopharmacology guidelines section based on Dr. Paul Soloff's algorithm.4
Families bear the brunt of their loved one s erratic behavior, usually without support or information to help them. They struggle to deal with moods that swing from one extreme to another without any apparent provoking event, with what appear to be overreactions to incidents that seem minor, or with impulsive behavior that may be dangerous. Families feel a sense of failure when efforts to improve or control situations in their homes go from increasingly more difficult to virtually impossible to manage. They live in a psychic war zone, paying a high price mentally and physically. The frustration of living with someone with BPD has a ripple effect-from stress-related disorders to lost days of work to marriages that don't survive. When accusations of abuse occur, family members can be ostracized by others. Once the charge of abuse is made, it is hard to undo the damage, even if the person with BPD rescinds the allegation.
Across all disciplines, families are frequently vilified and blamed. No family should be expected to cope alone, yet very few support groups are available. Although TARA offers them through its chapters, many more are urgently needed.
TARA members were recently trained in dialectical behavioral therapy by Dr. Linehan to develop a family education curriculum based on this therapy. Our aim is to help families create a therapeutic environment that decreases stress and helps recreate trust. Although this type of training cannot guarantee the elimination of volatile episodes, it may help decrease the number and intensity of these incidents in the home. We teach the biologic basis of BPD within a curriculum that emphasizes validation techniques. Preliminary outcomes indicate that our course is extremely helpful to families. 5
Is BPD an issue of public health or private pain? People with BPD often adopt maladaptive or impulsive behaviors to cope with their pain. These behaviors account for some of the nation's major public health problems. BPD has been found to be comorbid with many other conditions, such as substance abuse, 6,7 domestic violence, 8,9 eating disorders, 10 gambling, 11 sex addiction, unprotected sex, and increased risk for AIDS, stalking, road rage, and impulsive aggression. BPD has an estimated suicide rate of 10%. It is frequently masked by commonly known comorbid conditions that are easier to identify. Whatever symptom is identified first usually determines the door the person opens into the health-cure system. What is treated may be a maladaptive coping mechanism rather than the underlying syndrome. It is often the place of entry that establishes the primary diagnostic label. (12)
BPD exists as a "shadow" population in other disciplines. This was apparent when TARA and the New York City Department of Substance Abuse sent a survey to all certified substance abuse facilities asking for the number of persons with BPD in their populations. Surprisingly, we received few responses. Curious, we phoned the facilities. They claimed they didn't have such persons. We described the BPD criteria as stated in the Diagnostic arid Statistical Manual of Mental Diseases, Fourth Edition, and inquired if their programs had people who fit this description. Most replied, "We're full of people like that." It appears to us that, in general, many of these substance abuse professionals were familiar with BPD symptoms but were unfamiliar with the disorder.
A Call to Action
BPD needs marketing. A useful example is how AIDS awareness was marketed. AIDS advocates created a research revolution, changed attitudes, and saved lives. We too can disseminate research and develop a gold standard method to assess BPD. To count we must be counted. The scientific community also has a responsibility to stop stigmatizing persons with BPD. It is time to demystify BPD with press conferences and outreach to inform the public. We must set aside territorial issues and reach out to comorbid communities where our patients are hidden, wreaking havoc but not being helped. We must break down boundaries between disciplines and present comorbid conditions as themes and variations of syndromes to pave the way for innovative changes in mental health policy and treatment. By uniting our efforts so that one voice is heard, we can finally bring BPD into the light.
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