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How Advocacy is Bringing
Borderline Personality Disorder
Into the Light

By Valerie Porr, MA for TEN (The Economics of Neuroscince)
Ms. Porr is president of the
Treatment and Research Advancement Association for Personality Disorders
This article appeared in T*E*N, The Economics of Neuroscience,
November 2001

BPD has been found to be comorbid with many other conditions, such as substance abuse, domestic violence, eating disorders, gambling, and sex addiction.
Pharmacological interventions for BPD are scarce and demand attention by researchers.
Omission of BPD from the 1990 National Comorbidity Study hindered BPD research finding from keeping pace with other mental illnesses.
Greater understanding of the biology of BPD is necessary to properly design treatment regimen
 
Abstract
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.
Introduction
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. 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.
Assessment Instruments
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. 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.
Axis II
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.
Renaming BPD
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.
Dissemination
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
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
Public Health
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.
References
1. Kessler RC. The national co-morbidity survey of the United Stares. International Rev Psychiatry.1994;6:365-376.
2. Kaye AL, Shea MT: Personality disorders, personality traits, and defense mechanisms measures, in Handbook of Psychiatric Measures. Edited by Task Force for the Handbook of Psychiatric Measures. Washington, DC, American Psychiatric Association. 2000;713-749.
3. Lety Nd, ed. Port V. New Hope for Borderline Personality Disorder. Prima Publishing, Roseville, California. 2001. In press.
4. Soloff R Algorithms for pharmacological treatment of personality dimensions: Symptom-specific treatments for cognitive-perceptual, affective, and impulsive-behavioral dysregulation. Bull Menninger Clin. 1998;62(2):195-214.
5. Hoffman PD, Fruzzetri AE, Swenson, CR. Dialectical behavioral therapy-family skills training. Family Process. 2001. In press.
6. Grilo CM, Martino S, Walker M, Becker D, Edell WS, McGlashen TH. Psychiatric comorbidity in psychiatrically hospitalized young adults with substance use disorders: A controlled study. Am I Psychiatry. 1997;154:1305-1307.
7. Crib CM. Martino S, Walker M, Becker D, Edell WS, McGlashen TH. Psychiatric comorbidity in adolescent inpatients with substance use disorders. Journal of the America Academy of Child and Adolescent Psychiatry. 34,1085-1091
8. Dutton DC, Starzomski AJ. Borderline personality in perpetrators of psychological and physical abuse. Violence & Victims. 1993;8:327-337.
9. Dutton DC. Intimate Abusiveness. Clinical Psychology: Science and Practice. 1995; 2:207-224.
10. Dennis AB Eating Disorders and Borderline Personality Disorder. Am Anorexia Bulimia Assoc. 1998; Summer.
11. Pallanri S, Quercioli L, Sood E, Hollander E. Lithium and valproate treatment of pathological gambling: a randomized single-blind study. J Clin Psychiatry. 2001. In press.
12. Coccaro BE, Kavoussi RJ. Fluoxetine and impulsive aggressive behavior in personality disordered subjects. Arch Gen Psychiatry. 1997;54:1081-1088.

PLEASE HELP PEOPLE WITH BPD BY SIGNING AND SENDING THE ATTACHED LETTER

The Washington DC Branch of the American Psychiatric Association, and The TARA APD Greater Washington, DC Chapter initiated a resolution to: explore changing the name of BPD and the Axis from Axis II to Axis I. This resolution was passed by the APA assembly at the annual May 2001 APA conference in New Orleans. Dr. Steve Hyman, former director of NIMH, is in full support of this resolution for change. He believes, as we do, that the severity, chronicity and degree of disability of BPD justifies its placement on Axis I. Many leading Community Psychiatrists across the country also support this resolution. The DSM V committee is not slated to look at these issues until the year 2005 or 2006. Acceptance of the APA resolution would by-pass the DSM V Committee and be effective immediately.
The placement of BPD on Axis II is unfair to people with the disorder as it results in denial of full insurance coverage or inclusion in parity legislation. Many insurance companies and managed care providers exclude coverage of Axis II disorders from their plans. This change would also lead to more frequent diagnosing of BPD in community mental health settings and would thereby result in more accurate epidemiological data on prevalence of BPD. As it is now stands, the diagnosis of BPD is frequently overlooked or replaced by the diagnosis of major depression or bi-polar disorder and/or PTSD. Thus, the data available does not support funding for new treatment or research programs because it does not accurately reflect the number of people actually suffering with BPD.
The preferred names that have the greatest chance of being adopted by the APA are emotional regulation disorder or emotional dysregulation disorder. Although you may have personal reservations about these names, we feel they are an improvement over the existing, highly stigmatizing and confusing name of BPD.
Please send the attached letter to Dr. Applebaum. Please add any personal experiences you have had with this issue. If you would like to do more, you can join our advocacy committee. TARA APD needs all the help we can get, as these important matters can make a difference in all of our lives. If you choose, you can also contact the doctors on the attached APA Committee list.. Thank you for helping us ensure people with BPD can have a life worth living.
Yours truly,
Valerie Porr, MA President, TARA APD
 
Please Download and send this letter to the
American Psychiatric Association
 
Paul Applebaum, MD, President Elect
American Psychiatric Association
100 Berkshire Road
Newtonville, MA 02460-2404
Re: Placement of Borderline Personality Disorder on to Axis I
Dear Dr. Applebaum:
This letter is in support of the APA Assembly resolution of May 2001 to explore moving Borderline Personality Disorder (BPD) to Axis I and changing the name of BPD. Dr. Steve Hyman, former director of NIMH, is in full support of this change. The severity, chronicity and degree of disability of BPD justifies placement of BPD on Axis I.
People with BPD are unfairly penalized when insurance companies deny full coverage to people with BPD because BPD is an Axis II diagnosis. They are also excluded from most parity legislation. The diagnosis of BPD is frequently overlooked or misdiagnosed as major depression, bi-polar disorder and/or PTSD. These disorders are reimbursable by insurance. When clinicians are no longer constrained by the possible loss of benefits to their clients more frequent diagnosis of BPD would result. This will yield more precise epidemiological data on prevalence of BPD and reflect more accurately the actual number of people suffering with the disorder. This type of data would justify new treatment or research programs for BPD. Axis II designation is unfair to patients, families and researchers.
The name BPD is confusing, is not in anyway descriptive of the disorder or the psychic pain that accompanies it, and merely serves to reinforce existing stigma. It allows for the continued trivialization of a very severe and painful disorder. A change in name would be beneficial to patients and families, as it would begin to change the pervasive professional stigma against these patients. It is time to stop referring to BPD as a "GARBAGE BAG DIAGNOSIS." (Fuller Torrey)
We hope you will do all you can to bring about these much needed changes so that people with BPD can have hope, access to appropriate treatment and equal opportunity for recovery as do people suffering with other mental illnesses. Thank you.
 
Yours truly,
 
Address ________________________________________________
City, State, Zip ___________________________________________
 

 
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