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BORDERLINE
PERSONALITY DISORDER
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How
Advocacy is Bringing
Borderline
Personality Disorder
Into the Light |
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| By
Valerie Porr, MA for
TEN (The Economics of Neuroscince)
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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.
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| • |
Greater
understanding of the biology of BPD is necessary to properly
design treatment regimen |
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| Abstract
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| 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.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. |
| 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.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
|
| 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.
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| PLEASE
HELP PEOPLE WITH BPD BY SIGNING AND SENDING THE ATTACHED LETTER
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| 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 |
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|
Please
Download and send this letter to the
American Psychiatric Association
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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.
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| 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. |
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| Yours
truly, |
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| Address
________________________________________________ |
| City,
State, Zip ___________________________________________ |
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