B o rd e r l i n e P e r s o n a l i t y

D i s o rd e r
Barriers to Borderline Personality Disorder
Treatment and Opportunities for Advocacy

a, b
Paula Tusiani-Eng, LMSW, MDiv *, Frank Yeomans, MD

KEYWORDS
 Borderline personality disorder  Barriers  Advocacy  Evidence-based treatments

KEY POINTS
 Patients experience difficulty in accessing the evidence-based treatments that exist for
borderline personality disorder.
 This article identifies barriers to treatment within the structural, economic, and political US
landscape and how families have created an advocacy movement to address this
problem.
 This article explores how the United States has addressed such barriers, in comparison
with other countries.
 Finally, the authors offer recommendations for future advocacy to increase access to
treatment for borderline personality disorder.

INTRODUCTION: IDENTIFYING THE PROBLEM: ACCESS TO TREATMENT FOR

BORDERLINE PERSONALITY DISORDER

Beginning in the early 1990s, a number of treatments have been developed, tested,
and shown to have efficacy for treating individuals with borderline personality disorder
(BPD).1,2 These treatments include transference-focused psychotherapy (TFP),3 dia-
lectical behavior therapy (DBT),4 schema-focused psychotherapy,5 mentalization-
based therapy (MBT),6 and good psychiatric management (GPM).7 In the context of
a field where other treatments have been developed, DBT, MBT, TFP, GPM, and
schema-focused psychotherapy have emerged as the “big 5.”2
Each of these treatments represents versions of psychodynamic and cognitive-
behavioral treatment approaches that clinician–researchers refined and modified
based on their understanding of the underlying developmental psychopathology,

Conflict of Interest: The authors declare that they have no conflict of interest.
a
Emotions Matter, Inc, PO Box 7642, Garden City, NY 11530, USA; b Personality Disorders
Institute (PDI), 122 East 42nd Street, Suite 3200, New York, NY 10168, USA
* Corresponding author.
E-mail address: [email protected]

Psychiatr Clin N Am - (2018) -–-

https://doi.org/10.1016/j.psc.2018.07.006 psych.theclinics.com
0193-953X/18/ª 2018 Elsevier Inc. All rights reserved.
2 Tusiani-Eng & Yeomans

clinical experience, and mechanisms of change in therapy so as to better help those

suffering from BPD. The evidence to date for these treatments suggests their effi-
cacy.2 Additionally, a number of adjunctive treatments have been developed,
including group therapies such as systems training for emotional predictability and
problem solving8 or family therapy modalities like Family Connections.9
Although each of the psychotherapies is distinct in its approach to treating core BPD
features, they share certain similarities, particularly in structure.2 Most of these 5 BPD
treatments involve intensive individualized or group therapy, or a combination of the
two, often involving several sessions per week. On average, BPD interventions last
1 to 3 years.10
Because multiple metaanalyses have found that the various psychotherapies pro-
duce similar effects and that there are no striking differences in those effects between
treatments, some have suggested that patient choice and the goodness of fit be-
tween the patient, therapist, and the specific therapeutic approach may be important
to the intervention outcome.11 These studies find that 40% to 60% of those with BPD
who are treated with one of these specialized treatments show significant symptom
reduction and increased. It seems clear that, with proper treatment, individuals with
BPD can stabilize, meaning that their symptoms remit and they no longer meet the
criteria for the diagnosis, and, in some cases, can achieve recovery from the condi-
tion. The specialized treatments differ in the ambitiousness of their goals.1 In
comparing treatment for BPD with treatment for other psychiatric conditions,
research demonstrates this outcome is more hopeful in terms of stabilization than
is found in the treatment of many other mental health diagnoses, such as bipolar
disorder.12–14
Given that effective evidence-based therapies exist to treat BPD, we might ask why
is it so difficult for those diagnosed to access these specific treatments.
Statistics point to the prevalence and severity of BPD. Studies suggest that between
1.6% and 6.0% of the US population is diagnosed with BPD.15,16 The severity of the
disorder is evidenced by the statistics on suicidality. Up to 75% of individuals with
BPD attempt suicide during the course of their illness and up to 10% of those diag-
nosed end their lives by suicide or drug overdose.17 Therefore, both the prevalence
and mortality or morbidity data speak to the importance of addressing the need to pro-
vide treatment for those with BPD.
Yet, there is a discrepancy between the availability of and access to effective treat-
ments and the clinical need.18 A gap exists between optimal care available in the form
of one of the evidence-based treatments and actual care delivered in health care sys-
tems.11 This article explores the factors that may contribute to treatment barriers in the
United States. It then identifies how concerned stakeholders in the United States have
addressed these barriers in comparison with other countries. Finally, it assesses op-
portunities for future treatment advocacy.

Factors that Contribute to Borderline Personality Disorder Treatment Barriers in

the United States
Lack of clinical education and diagnostic training in borderline personality disorder
BPD is a complex mental disorder characterized by 9 diagnosed criteria (Diagnostic
and Statistical Manual of Mental Disorders, fifth edition). This multilayered mix of
symptoms requires careful training for clinicians to make an accurate diagnosis,
because it can often be confused with other psychiatric disorders. For example, in
the current system, clinicians often mistakenly diagnose patients with BPD as having
bipolar disorder or major depression.19 Clinicians frequently treat the surface symp-
toms of BPD through psychopharmacology, without recognizing the more complex
 Borderline Personality Disorder 3

BPD pathology as the core psychiatric issue and in a context where there is little ev-
idence for the efficacy of psychopharmacology for BPD.
Training and education in psychiatric residency programs about BPD is woefully
inadequate.18 This factor leads to both misdiagnosis and underdiagnosis. Inaccurate
diagnosis can lead to years of misguided treatment, with the personal suffering and
missed opportunities for improvement that go along with that.19 Without adequate
training in recognizing and understanding BPD, in addition to missing the diagnosis,
doctors in the field can quickly become overwhelmed by the patient with BPD’s risky
behaviors, needs, and complex forms of attachment.20 For example, when a patient
with BPD presents with suicidal ideation and depression, clinicians often react with
feelings of anxiety, guilt, or anger because they are afraid to treat complicated and
challenging high-risk cases.21,22 This situation deters them from working with this
particular patient population, as well as from obtaining further training in the field of
personality disorders.
Compared with other fields in psychiatry or psychology, the number of graduates
annually who pursue a high level of training in BPD-specific therapies is relatively mi-
nor. Psychiatry residencies and psychology graduate programs do not provide full
training in the specialized treatments for BPD. Postgraduate education is necessary
and economics may play a factor in how many graduating psychiatrists and psychol-
ogists pursue further training. Training in BPD-specific treatment methods is both
costly and time intensive.23 For example, to become a licensed DBT trained clinician
through Behavioral Tech, the corporation responsible for DBT training, takes 2 years of
intensive training and costs between $8000 and $10,000.24 Both TFP and MBT
training also take significant training and costs, with ongoing intensive supervision
required. One of the objectives of GPM is to provide a more basic training that requires
less time and expense.7 Consequently, owing to the challenge of treating patients with
BPD and the extensive nature of training for the evidence-based treatments that have
been developed for BPD, there are not enough clinicians to meet the demand.25 In
addition, the majority of clinicians and researchers specializing in the condition reside
in urban areas, universities, or psychiatric research centers on the East or West Coasts
of the United States, where they have access to supervision and ongoing training. This
distribution leaves a wide swath of the BPD population in the middle of America under-
served, with few evidence-based treatment options.18

Culture of stigma toward the patient with borderline personality disorder

Stigma within the clinical community toward treating individuals with BPD is wide-
spread and often rooted in misperceptions and lack of knowledge about BPD.
Research shows professionals routinely stigmatize patients with BPD using negative
language, labeling them as manipulative, attention seeking, and not worthy of re-
sources26,27 and describing their experience working with this population as difficult.
This stigma has led to discriminatory practices, because some clinicians refuse to
treat patients with BPD.
The relative paucity of medical knowledge, research, and clinical education about
BPD has created a situation in which many clinicians, lacking the tools needed to
effectively treat this patient population, dismiss patients with BPD as difficult, manip-
ulative, or hard to handle,28 seeming to view the condition more as a moral failing than
a valid psychiatric condition. Such negative attitudes toward those with BPD may
result from the clinician unconsciously projecting his or her fears and inadequacies
onto the patient, blaming them for their mental disorder instead of acknowledging
the clinician’s own lack of adequate training as a possible source for their insecurity
and frustration. This reaction on the part of clinicians compounds the shame and guilt
4 Tusiani-Eng & Yeomans

experience by patients with BPD. These prejudices can be internalized by individuals

with BPD, who believe they are not worthy of being treated in a way that fuels negative
self-talk and stigma in the person.
A further way in which stigma toward the patient with BPD may become a barrier to
treatment is that the patient may reject or resist working with a therapist with a nega-
tive view of their disorder.18 Some patients reject treatment altogether, having expe-
rienced clinicians as authority figures who can make them feel invalidated.29 Clinicians
who use stigmatizing language can hinder recovery because individuals with BPD may
adopt the clinician’s negative narrative based on the rhetoric of stigma as opposed to
being able to more fully appreciate their own story.30
Stigma also hinders fostering a younger generation of clinicians and researchers
interested in BPD. Bias in clinicians who teach in the mental health professions can
have negative impact on the willingness of their students to specialize in the treatment
of BPD. This pattern not only affects patients and families trying to access mental
health care, but also affects the atmosphere throughout the mental health field and ex-
pands to limiting the public’s knowledge about this disorder.
Lack of medical research to understand borderline personality disorder as a
legitimate psychiatric disorder with a strong biological basis
Although the concept of BPD has existed in the psychiatric literature since 1938, BPD
as a diagnosis was not entered into the Diagnostic and Statistical Manual for Mental
Disorders until its third edition in 1980.4,31 Even with its introduction, BPD and other
personality disorders were relegated into a special diagnostic group (Axis II). As a
result, many in the field of mental health did not consider BPD a serious mental illness
(SMI) of equal standing with other disorders such as bipolar disorder, schizophrenia,
or major depression.4,32 In addition, in comparison with other major psychiatric con-
ditions, relatively little medical research exists today to help clinicians and researchers
understand the etiology and biology of BPD as a brain disorder.33 According a report
from the National Institute of Mental Health, BPD received the least amount of funding
for research grants compared with other major mental health disorders from 2009 to
2013.34 Despite its prevalence and devastating impact on both individuals and soci-
ety, BPD continues to be largely unrecognized as a priority and public health crisis
by the psychiatric research community and government funding agencies.35
The cost of treatments for borderline personality disorder and the organization of
insurance guidelines
Although evidence-based treatments have been shown to be effective, the cost of such
therapies makes it difficult for the majority of those with BPD to access them.36 This
situation is largely due to the fact that most BPD-specific treatments are not adequately
covered by health insurance companies in the United States. Insurers’ mental health
medical necessity guidelines are generally geared to cover treatment to resolve acute
psychiatric symptoms (eg, acute depression, suicidal feelings) with the goal of restoring
the patient to his or her baseline condition before symptom onset, even if that condition
is a chronically pathologic one. Many health insurance companies in the United States
base their coverage of treatments on the somewhat elusive term of medical necessity.
Although the term sounds medical, it is rooted more in the writings of the insurance in-
dustry37–39 and is used to justify treating only acute symptoms rather than underlying
conditions. The treatment of deeper, more chronic aspects of illness, which create
ongoing vulnerability to more acute episodes, is generally not covered.37 In other
words, insurers set up their guidelines to pay for brief acute treatments, but not the
long-term continuous treatments addressing the underlying factors of illness required
to help patients with BPD in a meaningful way. This approach is akin to reducing a fever
 Borderline Personality Disorder 5

without treating its underlying cause37 and does not allow for treatment of the root of
the problem. Currently, not treating the underlying condition may be illegal if insurer’s
coverage does not respect the law mandating parity in terms of the coverage of psy-
chiatric and medical illnesses.37 In addition to these concerns, many insurance com-
panies will not accept BPD as a billable diagnosis.40 Because of these reasons, the
evidence-based treatments for BPD are generally not covered by health insurance
plans. These treatments, by virtue of being long term, are costly and most patients
are required to pay out of pocket to access them,18,36 creating a situation where, for
the most part, access to the evidence-based treatments for BPD is limited to patients
and families in the middle and upper classes of society.
Evidence-based therapies are not widely accessible in publicly funded treatment
settings either.38 In many places, it is difficult to find Medicaid or Medicare providers
who treat BPD. Therapists in private practice knowledgeable in specialized treatments
tend not to accept these forms of reimbursement. Clinics who do accept Medicare
and Medicaid may not have therapists trained in the evidence-based treatments,
especially outside of urban centers.18 Receiving the appropriate level of care is also
an issue. Although the majority of patients with BPD can be treated as outpatients,
many require inpatient hospitalization, long-term residential treatment, or intensive
day treatment to stabilize and move on to outpatient treatment. These levels of care
are often not covered or only partially covered by health insurance. As a result of all
of these factors, many impacted by BPD go without treatment.

Federal and state policies that do not list borderline personality disorder as a
serious mental illness
In 1992, the Alcohol Drug Abuse and Mental Health Administration Reorganization Act
mandated the Department of Health and Human Services to distinguish SMI from
other forms of mental illness for the purpose of distributing grants to states. According
to the Alcohol Drug Abuse and Mental Health Administration Reorganization Act, the
federal definition of SMI was a condition that impacts an individual who is at least
18 years of age, with a diagnosable mental disorder in the Diagnostic and Statistical
Manual of Mental Disorders, 3rd edition, resulting in behavioral or emotional disorder
of sufficient duration that results in significant impairment which substantially limits
one or more of life’s major activities, such as maintaining interpersonal relationships,
activities of daily functioning, self-care, employment, and recreation.41 This definition
shifted mental health policy in the United States to focus on prioritizing funding based
on impairment severity.42
According to the Substance Abuse and Mental Health Services Administration, the
diagnoses most commonly associated with Serious Mental Illness under this definition
are schizophrenia, bipolar disorder, and major depressive disorders43 Borderline Per-
sonality Disorder is not specifically named in this list, although it is stated that “one or
more disorders may also fit the definition of SMI if those disorders result in functional
impairment.”43 Because BPD is not named as a SMI by SAMHSA, the classification is
not universally accepted among the 50 states that have flexibility in identifying specific
diagnosis they use to establish eligibility. In many states, the list of SMI diagnoses is
limited to schizophrenia, other psychotic disorders, bipolar disorder, mood disorders,
and major depression. Some states include personality disorders, but the decision is
subject to their understanding of the severity of BPD, the degree of impairment to the
individual, and the state’s perception of duration of the disorder.44 States can develop
specifications for the number of domains that an individual must be impaired in to
receive services, as well as for the duration of impairment. For instance, in some states
only those with severe and persistent mental illness that is considered chronic, in
6 Tusiani-Eng & Yeomans

contrast with a condition that can respond to treatment, qualify for reimbursement;
this excludes many with BPD and keeps treatment out of reach for many people
who could improve.45 Thus, eligibility and access to BPD treatment differs in every
state where health care policies are subject to state regulations.
Similarly, SMI definitions can vary among health care delivery reimbursement sys-
tems, which interpret state laws and determine eligibility of services. For example,
Blue Cross Blue Shield of Illinois specifically categorizes BPD as a Non-Serious Mental
Illness under state law in its provider manual.46 In contrast, anorexia nervosa, bulimia
nervosa, and obsessive-compulsive disorder are listed as SMIs. In states like this, in-
dividuals with BPD are more likely to qualify for some type of insurance coverage
based on a comorbid diagnosis, such as depression, to treat their systems than
they are for their actual diagnosis. This circumstance is both unfair and unwise,
because it denies patients information and treatment for their actual diagnosis, often
providing treatment only for 1 aspect of their total condition.45 This policy results in
bad medicine; research has shown that patients suffering from depression in the
context of BPD do not respond to the treatment for depression until the underlying
personality disorder is addressed.
Just as BPD is not well-understood in the clinical community and is shrouded by
stigma, misperceptions persist through the governmental and for-profit economic
health care systems leading to discriminatory health care delivery services. Although
research and personal experience with BPD clearly point to BPD fulfilling criteria for
SMI classification, the way the US governmental system classifies and understands
BPD within the larger framework creates significant barriers to treatment.

Responses to Treatment Barriers: Efforts to Improve Access to Treatment Through

Advocacy in the United States
Research and clinical advocacy
Since the 1990s, with the first treatment outcome studies, barriers to BPD treatment in
the United States have been addressed through advances in research. More recently,
organizations have been created to bring researchers together to communicate
across different research sites and help coordinate and focus efforts. In 2012, the
North American Society for the Study of Personality Disorders was founded as a pro-
fessional organization for clinicians and scientists devoted to research in personality
disorders. Its mission emphasizes new research pointing to positive treatment out-
comes for those with personality disorders, sharing this research with the clinical com-
munity and public, and advocating for research funding. Annual North American
Society for the Study of Personality Disorders conferences are held to present new
research and cultivate a new generation of young researchers.47 Similar efforts are
carried out at the international level by the European Society for the Study of Person-
ality Disorders and the International Society for the Study of Personality Disorders.
As a result of these and other efforts to bring attention to BPD, new research has
emerged on how to conceptualize the disorder, on the biological and social/interper-
sonal aspects of BPD, on the effectiveness of treatment, on diagnostic tools for aid cli-
nicians, on the rates of underdiagnosis, and on the cost effectiveness of treatment versus
nontreatment. Research has increased our understanding of the problem of BPD and
suicide and the need for more community resources. In recent years, a body of research
has focused on the Global Alliance for the Prevention and Early Intervention for Border-
line Personality Disorder, advocating for early intervention and prevention.48 These ef-
forts have called more attention to the problem of BPD and the barriers to treatment.
The National Institute of Mental Health (NIMH) provides much of the funding for
mental health research in this country. The amount of funding that has been granted
 Borderline Personality Disorder 7

for studies related to BPD is relatively small.34 Nevertheless, in 2012 NIMH introduced
the Research Domain Criteria system to evaluate and fund research. This system orga-
nizes levels of research from the basic biological to the social/interpersonal level and
has helped researchers to focus their investigations in the appropriate domain of study.
In 2016, a privately funded think tank of leading researchers convened to explore novel
approaches to understand BPD under the new Research Domain Criteria system. A
White Paper coming out of the meeting identified 6 areas for future research to consider
new efforts in brain and psychosocial studies.49 These include emotional dysregulation,
interpersonal and social deficits, impulsive aggression, the genetics of BPD, social
stressors in BPD, and animal models to study the neurobiology of BPD.49
Efforts have also been made by clinicians and private foundations to recruit and
support young researchers to study BPD. Clinical research teams in DBT, TFP,
GPM, and MBT continue to combine a focus on training with ongoing research, intro-
ducing graduate students and residents to evidence-based treatments, and gener-
ating interest in studying BPD. Families for Borderline Personality Disorder
Research was founded in 2011 at the Brain and Behavior Research Foundation
(www.bbrfoundation.org).50 It has funded 5 BPD researchers through National
Alliance for Research in Schizophrenia and Affective Disorders (NARSAD) Young
Investigator Grants of $70,000 each from the Brain and Behavior Research Foundation
(http://www.familiesforbpdresearch.org).51

Role of nonprofit organizations in advocacy

Given the challenges to providing appropriate care to the borderline population delin-
eated, family and peer-run nonprofit organizations developed address treatment bar-
riers through a focus on education, community support, and resources. Valerie Porr
was the first to gain the public’s attention when her loved one was diagnosed with
BPD. She found very little information about BPD and how it could be treated effec-
tively. This energized her to establish the Treatment and Research Advancements Na-
tional Association for Personality Disorder in New York.52 Porr developed a treatment
for individuals and families called the TARA Method, which is an 8-week class that in-
cludes elements of dialectical behavioral therapy, MBT, transference-focused psy-
chotherapy, and education about the neurobiology of BPD.53 Porr was an early
voice advocating for the BPD population, with an emphasis on education and commu-
nicating developments in neurobiological social cognition research.
The National Education Association for Borderline Personality Disorder (NEA-BPD),
a second national organization founded to meet the needs of family members, was
founded by Perry Hoffman, PhD, in 2001.54 Along with Alan Fruzzettii, Hoffman devel-
oped a 12-week course called Family Connections9 that is administered by trained
leaders and covers education and skills training based on DBT for family members
with loved ones impacted by BPD. The NEA-BPD received government grants to pur-
sue its mission of sponsoring regional and international conferences on BPD and
expanding the Family Connections teaching program. The NEA-BPD introduced a
model in which conferences targeted individuals with BPD and their family members
as well as clinicians and researchers, sometimes including family and client participa-
tion as conference presenters. According to its website, the NEA-BPD has hosted
more than 65 professional conferences to date.54
Through a partnership with the National Alliance for Mental Illness, the NEA-BPD
was instrumental in requesting a Congressional Report on BPD from the Substance
Abuse and Mental Health Association. This marked the first time that BPD was entered
into the Congressional Record as a SMI.55 Additionally, NEA-BPD worked with Repre-
sentative Tom Davis (R-VA-11) to sponsor House Resolution 1005, Supporting the
8 Tusiani-Eng & Yeomans

Goals and Ideals of Borderline Personality Disorder Awareness Month in the 110th
Congress in 2008.56
The New York-Presbyterian Hospital Borderline Personality Disorder Resource
Center (BPDRC) was founded 2003 by the Michael and Beatrice Tusiani, in memory
of their daughter Pamela Tusiani, who died as a result of BPD and negligent mental
health care.57 The BPDRC’s mission is to provide the public information about BPD
and help in seeking appropriate treatment. The BPDRC maintains the largest database
in the world of clinicians, facilities and programs specifically trained in BPD, and refers
callers to appropriate resources.58 Since its inception, the BPDRC has received more
than 13,000 calls, averaging 130 calls per month.58 “Back from the Edge”, an educa-
tional video on the Center’s website has been viewed almost 1,800,000 times. A study
of the data accumulated by the BPDRC from 2008 to 2015 determined that stigmati-
zation, financial concerns, and comorbid disorders are the most significant obstacles
for those seeking care for BPD.18
In May of 2015, a new US nonprofit called Emotions Matter, Inc, composed of indi-
viduals with BPD, family members, and clinicians, was launched to empower and con-
nect individuals impacted by BPD and to raise awareness and advocate for improved
mental health care.59 Emotions Matter differs from TARA, NEA-BPD, and the BPDRC
in that individuals with BPD are central in its leadership and programming, promoting
empowerment and recovery in addition to helping the organization understand the
experience and needs of individuals with BPD.
Emotions Matter launched grassroots campaigns to address treatment barriers on
social media. In April of 2016, it created a petition on Change.org addressed to Dr
Bruce Cuthbert, then the Acting Director of NIMH, requesting more funding for BPD
research. In 6 weeks, petition received more than 5000 signatures, leading to a meeting
at NIMH.59 The NIMH subsequently updated its webpage on BPD, demonstrating the
impact that individuals can have by advocating for BPD in the government agencies.
Twenty months later, the NIMH published its first public education brochure on BPD.60
In May 2017, Emotions Matter initiated a campaign to encourage members of
congress to sign a Congressional Letter sponsored by Representative Barbara Com-
stock, to recognize BPD as an SMI. This letter addressed the fact the BPD was not
listed as such in the 21st Cures Act of 2016, which allocated significant federal mental
health funding to states. Emotions Matter succeeded in mobilizing 5 additional mem-
bers of congress to sign the letter. The outcome from this effort is pending, but
communication about BPD has increased with both NIMH and Substance Abuse
and Mental Health Services Administration as a result.59

LEARNING FROM OTHER COUNTRIES

Efforts to advocate for patients with BPD are often intertwined with a country’s system
of health care delivery. Countries that have more coordinated health care systems can
provide organizational structures that help to move advocacy efforts forward.
For example, in the United Kingdom, the National Institute for Clinical Excellence
(NICE) was established in 1999 by the Secretary of State for Health. The original
aim of NICE was to ensure that the most clinically and cost effective drugs and treat-
ments were made available widely in the country’s National Health Service.61 The gov-
ernment believed that creating NICE could advance the pace at which good value
treatments were used across the National Health Service, in turn promoting successful
innovation on the part of clinicians, pharmaceutical companies, and the medical de-
vices industry. NICE has established a worldwide reputation for producing authorita-
tive evidence-based advice and guidelines.
 Borderline Personality Disorder 9

The NICE guidelines for managing BPD were published in 2009.61 They issued 4
important recommendations with the goal of improving access to treatment. First,
people with BPD should not be excluded from any health care or social service
because of their diagnosis or self-harm. Second, clinicians working with people with
BPD should explore treatment options with hope and optimism, articulating that re-
covery is possible. Third, drugs should not be prescribed for individuals with BPD.
Fourth, mental health clinicians should work with multidisciplinary specialists or ser-
vices to support those with BPD in the community.61
The NICE guidelines represent a significant paradigm shift in clinical thinking about
BPD not yet seen in the United States to the same degree. They educate the clinical
community about BPD being treated through therapy and multidisciplinary supports,
without relying on medication alone. They reduce stigma by encouraging optimism
about treatment. The NICE guidelines also establish the vital role that community ser-
vices play in BPD recovery, promoting multidisciplinary collaboration. The closest
equivalent to the NICE guidelines in the United States are the guidelines for treating
specific disorders by the American Psychiatric Association (APA), published in
2001,62 which have less influence than the NICE guidelines because they are issued
by a professional organization rather than a government agency. The APA guidelines
for BPD also stipulate that psychotherapy is the first line of treatment for BPD, rather
than medication. But the guidelines of a professional organization do not have the
same weight in determining treatment delivery and reimbursement as those developed
with the authority of a government agency in a country with a unified system of health
care delivery. Guidelines such as those of the APA can influence clinical and cultural
attitudes about BPD, but without as much of an impact as governmental directives.
Australia might provide us with the best example of effective BPD advocacy. Janne
McMahon, OAM, has been instrumental in engaging government support, starting
a submission to the Australian Parliament, Senate Community Affairs Committee
that was supported by a group of service user and family organizations. The initial
goal was to establish a task force to look into issues of access to treatment. The initia-
tive was supported by the Australian Medical Association, the Royal Australian and
New Zealand College of Psychiatrists, key nonprofit organizations, and key re-
searchers.63 The next step was the establishment of an Expert Reference Group
and the development of the National Health Medical Research Council – Clinical Prac-
tice Guidelines for the Management of Borderline Personality Disorder.
As in the United States, there was also a successful effort for the federal government
to recognize the importance of BPD when the Australian upper house (senate) estab-
lished the first week in October as BPD Awareness Week starting in October 2014
(in the United States, May is BPD Awareness Month). Advocacy groups in Australia
use the official recognition as a marker for a number of advocacy initiatives. Advocacy
efforts in the state of South Australia continued, with many submissions and letters to
consolidate across benches of the parliament’s upper house. A recent success has
been receiving funding of $10.25 million over 4 years to establish a BPD Center of
Excellence and a statewide BPD service in Southern Australia. These developments
demonstrate the potential impact of the cooperation between advocacy groups and
clinicians and researchers.
Advocacy efforts in Australia have also included the establishment of the Australian
BPD Foundation, a fledgling nonprofit organization established by a group of service
users, families, and clinicians on a voluntary basis. The group now organizes 7 annual
national conferences around the country with the project of developing a National
Training Strategy to provide training and professional development for clinicians
and those working in the service area.
10 Tusiani-Eng & Yeomans

Another significant strategy to bring more attention to BPD treatment across

Australia involved research. Researchers in Australia showed that BPD is a leading
contributor to the burden of disease (BOD) in the community.64 BOD is a measure
used by the World Health Organization to assess qualify of life, disability, loss of
health, and mortality related to disease.65 The BOD is used as essential scientific ev-
idence to influence public health data and policy. Researchers have linked BPD with
poor life outcomes, including severe and functional disability,66 high family and career
burden, poor physical health,67 and premature mortality/suicidality.68 Andrew Cha-
nen, a leading Australian researcher on BPD, outlines specific recommendations for
the Australian health system to manage those with BPD.64 Chanen places explicit
emphasis on access to treatment and clinical training to improve BOD outcomes.
Additionally, research in Australia has also included an important focus on the pa-
tient with BPD’s experience. In a survey of 153 people diagnosed with BPD, a study
by Lawn and McMahon69 showed that patients continue to experience significant
discrimination in Australia in both public and private health services. It was found
that patients who disclosed their BPD diagnosis were being systematically denied ac-
cess to treatment resources by health care providers, especially during emergency
room visits, as compared with other mental illnesses. The study documented under-
diagnosis of BPD, misdiagnosis, and misinformation about the condition. Lawn and
McMahon concluded that better clinical education and attitudes are needed to
improve the patient experience. Although research in the United States and Europe
has looked into social and economic costs of BPD,13,66,70 it has fallen behind Australia
in developing studies to understand the patient with BPD’s experience. By focusing on
the patient with BPD, Australian researchers have gathered vital information to under-
stand how the health care system itself may negatively impact patients’ symptoms,
self-concept, and resistance to treatment.
It is clear that misunderstanding and stigma regarding BPD have been major imped-
iments to providing adequate treatment resources. As these problems are slowly
improving, the clinical, research, and government communities have begun to more
adequately address the needs of the BPD community. This change involves the
need for clinicians, researchers, and government officials to take their share of respon-
sibility for the patient’s experience and to continue to adopt more positive attitudes
and structures to improve access to treatment. Putting priority on the patient’s needs
involves, among other things, validating the trauma that individuals may have experi-
enced in a system that has chronically included unfounded stigma of those with BPD.
In summary, the different approaches within Australian advocacy efforts have been
successful thus far in placing an emphasis on the patient, the disorder’s severity,
and discrimination in the health care system.

DISCUSSION: FUTURE DIRECTIONS FOR TREATMENT ADVOCACY IN THE UNITED

STATES

After reviewing barriers to accessing treatment for BPD and comparing US efforts to
address these barriers with some other countries, the following recommendations are
made to advance BPD treatment advocacy in the United States:
1. Create centralized standards for categorizing BPD by a government agency to
manage BPD in place of a system where 50 states set standards in a decentralized
way.
2. Encourage the APA and the government to work more closely together.
3. Increase work by advocacy groups and clinicians to lobby for state legislation to
mandate health insurance coverage for evidence-based BPD treatments.
 Borderline Personality Disorder 11

4. Increase the mobilization of government agencies, researchers, clinicians, pa-

tients, and family members working together for reform. Even though progress
has been made, Zimmerman35 contends that, compared with other mental disor-
ders, the BPD clinical community lacks an advocacy strategy. Zimmerman35 attri-
butes this to a lack of an advocacy strategy on the part of clinicians, who have
largely ignored BPD and have not done a good job highlighting the public health
implications of the disorder.
5. Use laws that exist to advocate for the BPD population. Although the federal parity
law requiring insurance companies to cover mental illness at an equal level to other
illnesses should, in theory, have established fair insurance reimbursement for the
treatment BPD, evidence suggests that the parity law is largely not respected.38
While these breeches in the application of the parity law are being pursued in court,
further economic and social impact studies of BPD will help evidence for the wis-
dom and need for insurance coverage for the treatments specific to BPD. Class ac-
tion lawsuits have a role in this effort.
6. Increase the inclusion of the patient experience in advocacy efforts.
7. Better educate the general public on the severity of the disorder and its cost to so-
ciety. Without treatment, the high cost to society will continue, given that untreated
BPD contributes to the suicide rate and other social problems, such as homeless-
ness, children in foster care, incarceration, and unemployment.
8. Increase clinical education. Future efforts for advocacy at the clinical level should
include mandating education about BPD in medical and mental health training,
developing a comprehensive antistigma campaign specifically geared toward clini-
cians, advocating for better accounting of prevalence and suicide statistics, advo-
cating for adequate insurance coverage for treatment, and advocating for
increased funding for research.

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