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From Individuals to International Policy: Achievements and Ongoing Needs in Diabetes Advocacy


Abstract and Figures

Diabetes impacts tens of millions of people in the United States of America and 9 % of the worldwide population. Given the public health implications and economic burden of diabetes, the needs of people with diabetes must be addressed through strategic and effective advocacy efforts. Diabetes advocacy aims to increase public awareness about diabetes, raise funds for research and care, influence policy impacting people with diabetes, and promote optimal individual outcomes. We present a framework for diabetes advocacy activities by individuals and at the community, national, and international levels and identify challenges and gaps in current diabetes advocacy. Various groups have organized successful diabetes advocacy campaigns toward these goals, and lessons for further advancing diabetes advocacy can be learned from other health-related populations. Finally, we discuss the role of healthcare providers and mental/behavioral health professionals in advocacy efforts that can benefit their patients and the broader population of people with diabetes.
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From Individuals to International Policy: Achievements
and Ongoing Needs in Diabetes Advocacy
Marisa E. Hilliard
&Sean M. Oser
&Kelly L. Close
&Nancy F. Liu
&Korey K. Hood
Barbara J. Anderson
#Springer Science+Business Media New York 2015
Abstract Diabetes impacts tens of millions of people in the
United States of America and 9 % of the worldwide popula-
tion. Given the public health implications and economic bur-
den of diabetes, the needs of people with diabetes must be
addressed through strategic and effective advocacy efforts.
Diabetes advocacy aims to increase public awareness about
diabetes, raise funds for research and care, influence policy
impacting people with diabetes, and promote optimal individ-
ual outcomes. We present a framework for diabetes advocacy
activities by individuals and at the community, national, and
international levels and identify challenges and gaps in current
diabetes advocacy. Various groups have organized successful
diabetes advocacy campaigns toward these goals, and lessons
for further advancing diabetes advocacy can be learned from
other health-related populations. Finally, we discuss the role
of healthcare providers and mental/behavioral health profes-
sionals in advocacy efforts that can benefit their patients and
the broader population of people with diabetes.
Keywords Type 1 d iabet es .Ty pe 2 diabete s .Advocacy .
Advocacy is often driven by the scope and public impact of an
issue, in combination with a need for additional supports or
resources currently unavailable. In the case of chronic health
conditions, drivers include the number of people affected;
disease distribution in a community, nation, or across the
globe; individual and societal costs (financial, physical, and
emotional); and unmet prevention and treatment needs. It has
long been recognized that diabetes meets these criteria for
being a public health threat in need of advocacy [1,2].
Nearly two million people are diagnosed with diabetes in
America annually [1]. Approximately 29 million Americans
(over 9 % of the population and over 25 % of those over age
65) have diabetes; the vast majority have type 2 diabetes, and
about 1.25 million have type 1 diabetes [3]. Worldwide the
prevalence across diabetes types was estimated to be 9 %
among people aged 18 and older in 2014 [4].
Diabetes is extremely expensive, both individually and so-
cietally, making treatment adherence and achievement of op-
timal outcomes impossible for many, especially in developing
countries [57]. Global health expenditures on diabetes were
estimated to be at least $612 billion in 2014 [8]. The US
burden of diabetes-related healthcare expenditures in 2012
This article is part of the Topical Collection on Psychosocial Aspects
*Marisa E. Hilliard
Sean M. Oser
Kelly L. Close
Nancy F. Liu
Korey K. Hood
Barbara J. Anderson
Baylor College of Medicine, 1102 Bates Avenue, Suite 940,
Houston, TX 77030, USA
Pennsylvania State University College of Medicine, 500 University
Drive, HP-21, Hershey, PA 17033, USA
The diaTribe Foundation, 804 Haight Street, San
Francisco, CA 94117, USA
Stanford University School of Medicine, 780 Welch Road, MC 5208,
Palo Alto, CA 94305-5208, USA
Curr Diab Rep (2015) 15:59
DOI 10.1007/s11892-015-0636-z
was estimated at $245 billion, representing a 41 % increase
since 2007 and comprising 20 % of all US healthcare costs [8].
Annual US healthcare costs for a person with diabetes are
estimated to be 2.3 times greater than those of people without
diabetes, around $13,700/person [9].
The individual and family demands of diabetes manage-
ment are great as well. Living with and managing diabetes is
complex and demanding. Self-management regimens are in-
tense: the American Diabetes Association (ADA) guidelines
for care include a combination of frequent blood glucose mon-
itoring, oral medications, insulin calculation and administra-
tion, and careful attention to nutrition and physical activity,
depending on diabetes type and individual needs. Healthcare
providers (HCPs) work with individuals with diabetes to tailor
treatment recommendations, maximize the benefits of adher-
ing to the self-management regimen, minimize risk of compli-
cations, and treat complications that do arise despite those
efforts [10].
In addition to the epidemic number of people affected,
economic costs, and individual and healthcare system efforts
needed to manage diabetes, diabetes advocacy is also driven
by an imperative to reduce rampant stigma and inequality.
Many people find having diabetes embarrassing, have a di-
minished sense of normalcy, and feel judged by a public bias
that diabetes is the fault of the individual, often leading to
isolation and withdrawal, low self-esteem, and non-
adherence to treatment recommendations [11,12,13,14].
Additionally, there are vast disparities in health outcomes
graphic, and racial groups [5,15]. Advocacy is needed to
build awareness and education about diabetes worldwide in
order to reduce stigma, increase access to resources, and ulti-
mately improve the lives of people with diabetes.
The goals of this paper are to describe the landscape of
diabetes advocacy activities and their impact on key out-
comes, present case examples of successful diabetes advocacy
campaigns, identify gaps in diabetes advocacy, and serve as a
call to action to coordinate advocacy efforts, conduct rigorous
advocacy research, and enhance professional advocacy
Diabetes Advocacy Framework
We present a framework of various domains of diabetes
advocacy, representing previous and current advocacy ef-
forts that can guide future activities and research. We de-
fine the target outcomes of diabetes advocacy as increased
awareness and education about all types of diabetes, secur-
ing funding to advance diabetes research and care, policy
changes benefitting people with diabetes, and improved in-
dividual diabetes outcomes, including personal empower-
ment and optimal health status.
As depicted in Fig. 1, the Diabetes Advocacy Framework
represents activities to achieve these outcomes across four
levels: (1) individual actions to meet personal and family
needs, (2) community efforts to educate ones personal net-
work or call for change in ones local area, (3) national activ-
ities to increase awareness, raise funds, and influence federal
policy, and (4) international actions to achieve these goals on
a global scale and provide assistance to resource-poor nations.
Advocacy skills training programs [16,17] and resources
[18] can help individuals become involved in advocacy
(Table 1). In the following section, we describe activities at
each level of the Diabetes Advocacy Framework.
Individual Level
Advocacy on the individual level involves individuals, fami-
lies, and HCPs taking action to obtain support and resources
for the needs of specific people with diabetes. This includes
individuals/families engaging in self-advocacy, such as seek-
ing assistance from family, friends, or coworkers, requesting
accommodations from school systems or employers, and
communicating care-related needs and preferences to HCPs
and insurers. HCPs may also advocate on behalf of their pa-
tients (e.g., to substantiate medical necessity of a service to a
payer, to request a patients employer/school provide appro-
priate accommodations).
Individual advocacy strengthens education and awareness,
and data from other conditions suggest that benefits may also
include greater personal empowerment (i.e., sense of efficacy
to effect change, participation in healthcare decisions)
[1921]. Fostering diabetes self-advocacy skills (e.g., effec-
tive patientprovider communication, navigating the
healthcare and payer systems) is acknowledged as critically
important [22,23], and some behavioral interventions teach
individuals self-advocacy strategies [24,25]. For example,
novel BPhotovoice^programs approach health advocacy
through art by encouraging participants to express their expe-
riences, advocate for their needs, and communicate with
viewers through photography [21,26]. In sum, the individual
level represents discrete skills and actions taken to meet the
unique needs of specific people and families living with dia-
betes; advocating for the needs of larger groups occur in the
next level: community.
Community Level
The goal of community-level advocacy is to improve the sit-
uations of individuals in the local community who face com-
mon challenges or barriers. Activities include efforts to reduce
stigma and misconceptions about diabetes through personal
actions such as dispelling myths and educating onespersonal
network about diabetes. This level also involves lobbying lo-
cal government officials and organizations for changes in
59 Page 2 of 10 Curr Diab Rep (2015) 15:59
policies that affect people with diabetes. Local healthcare
organizations/centers and chapters of national organizations
(e.g., JDRF, American Diabetes Association [ADA]) often
lead community advocacy activities including local
fundraising efforts, awareness campaigns, and supportive
programming for patients/families such as educational events
and diabetes screenings/health fairs. One creative approach to
community-level advocacy is the development of college
courses for aspiring healthcare professionals to gain in-depth
education and simulation experiences related to diabetes [27],
Fig. 1 Diabetes advocacy across
four levels
Tabl e 1 Diabetes advocacy
resources and toolkits Organization Location Contents
International Diabetes
Federation Guidelines and checklist for international
Summary of United Nations priorities
Sample materials (letters, press releases)
American Diabetes
Association Guidelines and checklists for community
and national advocacy
Links to contact elected officials
Advocacy skills training resources
Sample materials (speeches, media)
American Association of
Diabetes Educators
Guidelines for community and national
Summary of state and federal legislation
Links to contact elected officials
Educational materials about key
advocacy issues
JDRF Educational materials about key
advocacy issues
Links to contact elected officials
Links to petitions and social media
Diabetes Advocates
Advocacy skills training resources
Links to social media
Summary of federal legislation priorities
Educational materials about key
advocacy issues
Curr Diab Rep (2015) 15:59 Page 3 of 10 59
which will help prepare future providers to meet the needs of
patients with diabetes. In sum, the community level is com-
prised of individual or group actions taken to meet the com-
mon needs of a community of people and families living with
diabetes; advocating for policy changes that affect even larger
populations of people with diabetes occur in the next level:
National Level
National advocacy aims to influence policies and resources
impacting the nationwide population of individuals with dia-
betes. Activities include individuals and groups of various
sizes participating in diabetes organizations, fundraising for
research, and educating and lobbying government officials
or organizations around national policies. Efforts at this level
often directly influence state and local policies through
governmental/organizational hierarchies. National organiza-
tions such as the ADA have a history of successful advocacy
resulting in federal laws to fight discrimination and protect
individualsrights at work and school [2830,31••]. For ex-
ample, ADAs Safe at School program has made it permissible
for students to safely conduct diabetes management tasks dur-
ing the school day in public school systems across the country
[32,33]. At the national level, successes are attributed to in-
dividual actions and cooperative efforts among multiple na-
tional organizations. For example, in partnership with the
National Institutes of Health (NIH) and the Centers for
Disease Control and Prevention (CDC), the ADA helped to
create the National Diabetes Education Program [28], a feat
that could not have occurred without collaboration on the
national scale. The 2015 ADA Standards of Medical Care
include, for the first time, a section on diabetes advocacy
[3], highlighting its importance to standard diabetes manage-
ment. In sum, the national level includes individual and orga-
nizational actions that aim to influence federal policies affect-
ing people and families living with diabetes across the coun-
try; beyond national borders, advocacy efforts impacting peo-
ple across the globe occur in the next level: international.
International Level
Like other non-communicable diseases, diabetes has histori-
cally been marginalized on the global health agenda due in
large part to often being perceived as the result of individual
choices, with little recognition of the social and genetic deter-
minants [34]. International advocacy emphasizes increasing
awareness about diabetes impact and needs on a global scale
and gathering financial and other resources to support individ-
uals with diabetes across national borders who lack access to
adequate care [35].
The International Diabetes Federation (IDF) is an umbrella
organization of over 230 national diabetes associations in 170
countries and territories across the globe that leads internation-
al diabetes advocacy [36]. The aims of the IDFare to influence
policy, increase public awareness, encourage health improve-
ment, promote the exchange of high-quality information about
diabetes, and provide education for people with diabetes and
their HCPs. IDFs international advocacy activities include the
2006 United Nations Resolution on Diabetes (United Nations
Resolution 61/225) which encourages all UN member states
Bto develop national policies for the prevention, treatment, and
care of diabetes in line with the sustainable development of
their health-care system^[37,38]. The 2011 IDF Diabetes
Road Map Programme called for world leaders to invest in
and coordinate efforts to combat diabetes through four central
messages: BDiabetes is a major global threat to human security
and prosperity; The global failure to invest in diabetes has led
to the current crisis; The news is bad but we have solutions;
Diabetes affects everyone and requires a collective response^
[39]. These campaigns have forced the world to take seriously
a disease that previously had not been well understood or
resourced. In addition to promoting global awareness, other
aspects of how the IDF functions can inform effective advo-
cacy at national, local, and individual levels. For example,
embedded within the IDFs diabetes awareness slogans are
important educational messages: for example, BDiabetes is
Preventable^offers education about changing diet and phys-
ical activity. In addition, the IDF often focuses advocacy for
specific subgroups (e.g., women with gestational diabetes,
youth with type 1 diabetes) in order to deliver targeted educa-
tion and resources. In sum, international advocacy aims to
bring diabetes information into global awareness and to im-
prove the lives of individuals and communities living with
diabetes in all parts of the world.
Across Levels
Health advocacy has been conceptualized as a series of activ-
ities that cross multiple levels [40,41], and our framework
also acknowledges the potential for dynamic transactions be-
tween levels. For example, an individual who asks a coworker
for assistance with a diabetes management task at work may
educate the coworker about diabetes, which can result in im-
mediate individual benefits. Rippling effects among the co-
workers friends and family can impact communities and be-
yond by reducing diabetes myths and potentially inspiring
someone to participate in an awareness walk, lobby their rep-
resentative for a diabetes-related policy change, or donate to
the IDF. Likewise, school-related advocacy efforts by national
diabetes organizations can provide public resources that equip
parents to obtain needed supports for diabetes management at
school [42,43] and have the potential to change state and
federal policies related to school staff training requirements
for diabetes management [44]. Individually, parents often
must ensure the policy is applied in their childs case. In the
59 Page 4 of 10 Curr Diab Rep (2015) 15:59
following section, we present case studies of successful dia-
betes advocacy activities that cross individual, community,
national, and international levels.
Case Studies in Diabetes Advocacy Across Levels
Patient Hackers Heard at the FDA and Beyond:
the Nightscout Project
Despite rapidly advancing diabetes care, many unmet needs
remain for individuals who must deal with the practicalities of
daily management, such as fear of hypoglycemia, anxiety as-
sociated with leaving children with diabetes unattended, and
the demands of frequent blood glucose monitoring and com-
plex insulin adjustments throughout the day and overnight. A
grassroots group of patients and parents called Nightscout (or
BCGM in the Cloud^) developed a crowd-sourced open-
source software platform that allows real-time access to glu-
cose data from continuous glucose monitoring (CGM) sys-
tems via the web [45]. By giving individuals and families
access to their glucose data through any web-connected de-
vice, this technology offers information and peace of mind. In
2014, Nightscout gained momentum in the diabetes commu-
nity and founded a Facebook group; within 1 year, their mem-
bers numbered over 11,000 [46]. The group has been bol-
stered by #WeAreNotWaiting, a social media advocacy cam-
paign encouraging patients and providers to take device and
software development into their own hands. Nightscout has
gained attention from national media, including features in the
Wall Street Journal [47] and Microsoft [48], and an informa-
tional meeting with the FDA [49]. Ultimately, individual and
community advocacy through Nightscout has advanced dia-
logue about the need for more connected devices and a faster-
moving environment for development of technologies people
with diabetes can use in their daily lives. Indeed, in early 2015,
the FDA approved remote-monitoring technology from
Dexcom, a CGM manufacturer, faster than expected and
down-classified the secondary display of CGM data, such that
applications that display these data will no longer be subject to
FDA premarket review [50]. Nightscout exemplifies how ad-
vocacy emerging from a small group of individuals can cap-
ture the attention of the local and national diabetes communi-
ty, engage national organizations, and impact regulatory
From the Mouths of Babes: JDRF Childrens Congress
The NIH Special Diabetes Program is a US Congressional
program that allocates research specifically dedicated to type
1 diabetes beyond the standard congressional appropriations
to each NIH institute. It has historically been an annual pro-
gram, with no guarantee of renewal each year. Advocacy
efforts, including the JDRF ChildrensCongress,aimtose-
cure its renewal [16,51]. Every other year, they invite appli-
cations from children with diabetes to become delegates, and
over 150 children from all 50 states and Washington, DC meet
with elected congressional officials. Since it began in 1999,
there have been eight biennial Childrens Congresses, with
over 1000 children serving as delegates. In 2011, the
Childrens Congress helped secure a promise from the FDA
for artificial pancreas technologies guidance. In 2012, 85 % of
all members of Congress met with Childrens Congress
Delegates. So far, the Special Diabetes Program has been
renewed each time it has come before Congress [51]. This
program is an example of individuals becoming involved in
the national level of advocacy.
Bridging the Information Divide: the PLAID Journal
There has long been a divide between the access that people
with diabetes and their care providers have to information
about new developments and research, due in large part to
the antiquated paternalistic notion of Physician Knows Best
and logistical barriers including access to medical and scien-
tific journals. With the proliferation of Open Access journals
since the late 1980s, there is broader and quicker public access
to scientific information. Although the gap persists, advocacy
efforts have helped to shrink the divide between people with
diabetes and the scientific community. For example, in 2014,
Martin Wood, diabetes advocate and Director of the Medical
Library at Florida State University, founded the People Living
with And Inspired by Diabetes (PLAID) Journal. PLAID rep-
resents a forum for collaboration among people with diabetes,
providers, and diabetes researchers. The mission of this Open
Access journal housed electronically in a major university med-
ical library is to encourage and facilitate dialogue and collabo-
ration in research relevant to the lives of people with diabetes
[52]. This is an example of an individual advocating for and
obtaining support from a diabetes community to build a plat-
form that will have national and international contributors and
readers. Ultimately, PLAID will assist in further narrowing the
communication divide and providing benefits to individuals
and communities of people with diabetes. This represents ad-
vocacy spanning all four levels in our framework.
Access to Insulin for Children with Diabetes
Across the World: IDFs Life for a Child Program
Access to education, insulin, and necessary diabetes care sup-
plies remains sparse in developing countries. Globally, inade-
quate access to insulin remains the most common cause of
death in children with diabetes [53], and the estimated life
expectancy of a newly diagnosed child with diabetes is under
1yearinsomeareas[54]. Given low awareness and financial
support, the IDF partnered with several diabetes advocacy
Curr Diab Rep (2015) 15:59 Page 5 of 10 59
groups to establish the BLife for a Child^program to provide
insulin and care to children with diabetes in developing coun-
tries [55]. The program currently helps over 15,000 youth
with diabetes in 48 countries. To increase community engage-
ment and awareness of the program, Partnering for Diabetes
Change created the BSpare a Rose Save a Child^campaign,
encouraging individuals to buy one less rose at Valentines
Day and donate the saved money to Life for a Child. In its
first year, Spare a Rose raised over $3000 in 1 week and
generated significant discussion on social media [56]. In each
of the subsequent 2 years, the campaign raised over $25,000
from hundreds of individual donations, providing a year of life
to 400500 children per year. This represents an over eight-
fold increase in donations from the first year. The astounding
growth of the Spare a Rose program illustrates the impact of
advocacy across levels, from community mobilization to in-
dividual donations, with international impact.
Raising a Voice for More Accurate Meters and Strips
Blood glucose meters and strips are the basic tools used by
people with all types of diabetes to guide lifestyle and treatment
decisions based on current blood glucose. Inaccuracies in these
tools can lead to errors in blood glucose management, incorrect
dosing of insulin and medication, and ultimately increased risk
of complications or hypoglycemia. In a Diabetes Technology
Society Meeting in May 2013, FDA representatives, industry
leaders, and HCPs all acknowledged that some available blood
glucose meters did not meet the accuracy standards for which
they were originally approved [57]. In response, the diabetes
online community created the BStrip Safely^campaign to raise
awareness of the dangers of device inaccuracies and the need for
greater attention to accuracy [58]. Using social media, individual
advocates spread awareness and rallied hundreds of people to
provide feedback to the FDA through public docket comments
on drafted blood glucose monitoring standards. The effort result-
ed in 556 comments on the public docket (approximately 400
from people with diabetes), the first-ever live FDApatient on-
line chat on diabetes and glucose monitoring devices [59,60],
and an in-person FDApatient meeting on the unmet needs in
diabetes. The FDA publicly thanked the diabetes community for
mobilizing input from people with diabetes on regulatory stan-
dards and encouraged future work together [61]. This program
brought individual advocacy into community mobilization to
facilitate powerful conversation on national regulatory policy
impacting people with different diabetes types.
Challenges and Gaps in Diabetes Advocacy
Despite the successes illustrated by these case studies and
other important diabetes advocacy campaigns, challenges
and gaps in advocacy remain. Appropriate resources for care
and research are still lacking, public misunderstanding about
the seriousness of diabetes is common, and stigma around
prevention and management of the disease abounds. An
ADA study found that focus group participants viewed diabe-
tes as only moderately severe compared to cancer and heart
disease, which were perceived as very serious [62]. These
beliefs persist despite the grave complications of diabetes,
including hypoglycemia, amputations, blindness, and kidney
failure. Another barrier is diabetes stigma, where the disease is
perceived as due to a failure of personal responsibility. The
associated Bshame and blame^arise from beliefs that diabetes
is only caused by laziness or overeating and not understanding
the sociocultural or genetic factors of developing the disease
[14]. Other challenges also stand in the way of widespread,
coordinated attention: the relatively small population with
type 1 diabetes acts as a disincentive for industry investment
and research [63], and people with type 2 diabetes have less
organized advocacy, fewer resources, and lower public visi-
bility due to stigma and self-blame.
In the face of these barriers, what can we learn from other
successful disease advocates? A report on HIV/AIDS advoca-
cy outlines five priorities for advocates: gaining attention, be-
ing prepared with knowledge and solutions, creating commu-
nity, enforcing accountability, and inspiring leadership [64].
The diabetes community has assets in the form of knowledge,
passionate community, and smart leadership. However, public
attention and accountability are key elements which are need-
ed but lacking in the drive to stimulate coordinated action. In
recent years, public acts of patient mobilization and protests
sparked mainstream interest in their respective conditions. For
example, political demonstrations by the HIV/AIDS group
ACT UP [64] and breast cancer advocates [65] have led the
FDA, major pharmaceutical companies, and researchers to
engage patients to consult on clinical trial design, to increase
access to new therapies, and to enhance accountability from
all stakeholders for improving outcomes [6467].
Call to Action
Research Priorities
While we do not propose to set a specific scientific agenda for
diabetes advocacy, we provide several suggestions as advo-
cates move forward in their work, based in part on other well-
documented proposals for communities and advocacy [68,
69]. A research agenda for diabetes advocacy is intended to
strengthen and support the roles of advocates and champions
of diabetes. One of the primary goals is to increase the rigor
associated with understanding the impact of advocacy by (1)
identifying distinct metrics appropriate for each level of advo-
cacy (i.e., metrics for community advocacy should be different
than national advocacy) and (2) broadening target outcome
59 Page 6 of 10 Curr Diab Rep (2015) 15:59
measures beyond only financial ones. The measuring sticks
currently used to determine whether advocacy efforts are mak-
ing progress largely focus on funding and resources, and these
do not capture the richness or progression of these efforts.
While some metrics may show up in strategic plans, they
may be aspirational and on larger scales. We encourage small
achievable metrics that are linearly linkedin other words,
identify each step toward a loftier goal of the advocacy effort
and select an appropriate measure to determine if each step has
been achieved. For example, our earlier example about
NightScout may include incremental outcomes that are small-
er and easier to achieve (e.g., increase visits to website to read
about NightScout, increase in uptake of system components).
In addition, they may be interested in linking to outcomes that
are more distal and indirectly linked, but equally important
(e.g., usersquality of life or objective health outcomes). It
may also be beneficial to employ quality improvement strate-
gies [70] to systematically conduct and evaluate small-scale
cycles of trial and error. It is well documented in education,
business, and health arenas that reinforcement of the process
(versus the outcome) promotes better outcomes. Focusing on
these small steps and metrics sets the stage for greater rigor
around advocacy outcomes.
Developing infrastructure is a critical consideration when
attempting to infuse rigor into the evaluation of diabetes ad-
vocacy outcomes. Many advocacy organizations, which are
often non-profits, operate on small budgets and rely on volun-
teers to accomplish mission-aligned goals. Seeking pro bono
partnerships with experienced investigators in conducting
clinical research will help to ensure that an infrastructure ex-
ists for evaluating the impact of advocacy. Research scientists
can bolster the range of outcomes considered (e.g., measuring
quality of life changes for participants and organizations) and
can calculate and compare the cost-effectiveness of program-
ming via community organizations versus medical institu-
tions. This type of collaboration among communities and
stakeholders is essential to strengthen the rigorous evaluation
of advocacy [68].
Healthcare Providers as Advocates
The most traditional provider advocacy role is on behalf of an
individual patient, although a wide range of professional ad-
vocacy activities have evolved. On the individual level, a pa-
tient may need a letter written or form completed to support
medical necessity of a service or supply to ensure equal rights
at school or at work (e.g., 504 Plans, paperwork for Family
Medical Leave Act protection), or they may need help with
critical decision making. Providing for these needs is a form of
advocating for an individual patients rights and needs [71,72,
73••]. Beyond the individual level, broader efforts can affect
groups of patients and potentially large subsets of the diabetes
population. In routine care provision, HCPs can encourage
patients and their families to participate in advocacy efforts,
such as letter writing to elected officials or fundraising for
diabetes organizations. They can also post literature on local,
national, and international advocacy opportunities in clinic
space or refer patients to advocacy organizationswebsites.
HCPs can also serve more formally through volunteer ac-
tivities or as members of organizational boards or committees.
With their expertise, HCPs are well positioned to provide
community education, from local events such as health fairs
or talks at a community center or school classroom to larger
scales such as newspaper, radio, website, or podcast appear-
ances. HCPs can also leverage their expertise to participate in
legislative efforts, such as by meeting with or writing letters to
elected officials about diabetes-related issues [73••,74]. HCPs
often serve on national and international organization commit-
tees to create policy statements that carry weight in govern-
ment policy decision-making [32].
Given mounting evidence of the mental/behavioral health
comorbidities of diabetes and their implications for poor
health outcomes [75], mental/behavioral health providers also
have an important role to play in advocating for widespread
access to appropriate services. Along with other professional
stakeholders, mental/behavioral health professionals and their
HCP colleagues are ideally poised to advocate individually
and on a larger scale for integration of mental/behavioral ser-
vices into routine diabetes care, annual mental/behavioral
health screenings, parity in insurance reimbursement for
mental/behavioral health services, and funding for research
to assess the cost-effectiveness and efficacy of new healthcare
delivery models that emphasize and promote mental/
behavioral health [76].
Diabetes represents a massive threat to public health that
has considerable physical, financial, and emotional im-
pacts on the lives of millions of people across the globe.
While advances in diabetes treatments are growing rapid-
ly, people living with all forms of diabetes continue to
face daunting challenges. Resources for many are difficult
to access, and individuals and families often must fight
uphill battles to obtain their necessary treatments and sup-
plies. Unfortunately, diabetes remains on the fringe of
policy makersagendas.
The Diabetes Advocacy Framework posits that successful
advocacy results from dynamic interactions across levels,
from individuals and communities impacting national and in-
ternational systems to policies and actions that ultimately ben-
efit patients living with diabetes. Only through coordination
and collaboration can efforts cohere into a collective move-
ment. Issues remain in improving public education about dia-
betes and increasing coordination between isolated groups,
Curr Diab Rep (2015) 15:59 Page 7 of 10 59
and successes in other health conditions tell us that these are
solvable problems and can be addressed by focusing on edu-
cation and accountability.
At a recent annual advocacy skills training workshop led
by the Diabetes Advocates organization, prominent HIV/
AIDS activist Michael Manganiello announced to the crowd
of diabetes advocates, BYou guys have energy and youre
moving towards something. I wouldnt call what you have a
movement, yet^[67]. We agree: there is still work left to do.
The advocacy success stories we highlight exemplify that a
single individual or a small group can make a remarkable
impact that influences the lives of people with diabetes across
the globe.
Whether advocating for individuals or groups large or
small, there are numerous ways individuals, HCPs, and the
scientific community can advance advocacy to support people
living with diabetes. Our individual patients and the commu-
nities in which we and they live, on every scale, can benefit
from our efforts. Please heed this call to action, consider how
you can get involved, and advocate for people with diabetes.
Acknowledgments The work of MarisaE. Hilliard, Ph.D., and Barbara
J. Anderson, Ph.D., on this paper was supported by the NIH (K12 DK
097696, PI: B. Anderson) and in part by The Leona M. and Harry B.
Helmsley Charitable Trust. Dr. Anderson is also supported by JDRF and
NIH (R01 DK 095273). Korey K. Hood, Ph.D., is supported by grants
from The Leona M. and Harry B. Helmsley Charitable Trust and NIH
(R01 DK 901470, DP3 DK 104059). Sean Oser, M.D., is supported by
the NIH (DP3 DK 104054).
Compliance with Ethics Guidelines
Conflict of Interest Marisa E. Hilliard, Sean M. Oser, Kelly Close,
Nancy Liu, Korey K. Hood, and Barbara J. Anderson declare that they
have no conflict of interest.
Human and Animal Rights and Informed Consent This article does
not contain any studies with human or animal subjects performed by any
of the authors.
Papers of particular interest, published recently, have been
highlighted as:
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... While some became aware of their own condition, developing self-leadership, others found their role as community influencers or even as social changemakers. It is important to note that the YLD training was developed in parallel with growing evidence of the rise of health activism and mobilisation (Hilliard et al., 2015a(Hilliard et al., , 2015bLandzelius, 2006; NCD Alliance, 2018; Russo et al., 2019). Therefore, it is possible that the proposed EL, and especially its Stage 3, would have not been expected from individuals living with NCDs two or more decades ago. ...
... group of YLD trainees. In addition, we acknowledge that type 1 diabetes, due to its need for 24/7 self-management, tends to favour community engagement and advocacy (Hilliard et al., 2015a(Hilliard et al., , 2015b which has a parallel in responses to HIV and some other highly demanding conditions (Barbot, 2006;Vicari and Cappai, 2016). Other limitations include the fact that we did not measure attitudinal changes objectively. ...
Background Acceptance and adjustment to lifelong noncommunicable diseases (NCDs) pose a great challenge for individuals living with these conditions. Diabetes is one of the most prevalent NCDs, with type 1 diabetes usually diagnosed during childhood. Self-leadership is linked to internal and external factors that may motivate individuals with NCDs to play an active role as changemakers in their community or society. The Young Leaders in Diabetes (YLD) training, created to equip young people with skills that would benefit the population to which they belong, uses the Empowerment Ladder as a framework to identify their position relative to three leadership stages (self, community and society). Objective To describe the stages and the ‘climbing’ process of the Empowerment Ladder and assess its suitability as a framework for use in a leadership training context. Method From among 29 youth leaders who participated, 15 were selected (5 men and 10 women) and had their community engagement and activity analysed before and after training. Individuals were positioned on the Empowerment Ladder according to their past and current roles and activities. The difference between pre- and post-training test grades (delta scores) was calculated. Results Post-training scores were significantly higher than pre-training scores (8.9 ± 0.54 vs 7.6 ± 1.08, p = .00084). Most individuals moved to a higher step on the Empowerment Ladder; however, three individuals, with delta scores lower than the median (0.1, 0.15 and 0.85) remained at their pre-YLD training level. Only one individual moved from Stage 1 (self) to Stage 3 (society). Another individual occupied two different steps at Stages 1 and 2 simultaneously because, although they demonstrated community leadership, they had not yet accepted their own health condition. Conclusion The Empowerment Ladder proved a useful tool for identifying stages from self to broader levels of leadership in individuals living with type 1 diabetes. These initial findings need to be validated with a larger population, which includes other NCD groups.
... 36 Although efforts are still necessary to reduce stigma, the present study provides a statistically significant result that self-stigma is associated with HbA1c in persons with type 1 diabetes, thereby supporting further interventions to promote diabetes advocacy. 37 Although the present study showed an association between self-stigma and HbA1c, we should be aware that every person with diabetes, regardless of their present HbA1c values, might suffer from stigma in many aspects. Several participants commented in the questionnaire additionally that if they had answered the questionnaire soon after diagnosis of type 1 diabetes, they would have answered the self-stigma scale worse. ...
Full-text available
Aims/introduction: There has been an increase in research on diabetes-related stigma and its association with glycated hemoglobin (HbA1c) over the past years. However, little is known about the association of self-stigma with HbA1c in persons with type 1 diabetes. This study aims to examine the association between self-stigma and HbA1c in Japanese people with type 1 diabetes. Materials and methods: This cross-sectional study was conducted at a clinic in Tokyo. Questionnaires using nine items from the Japanese version of the Self-Stigma Scale was distributed to outpatients with type 1 diabetes, aged ≥18 years. We excluded outpatients with serious mental disorder, those who required urgent medical treatment or received hemodialysis. Adjusted linear regression analyses tested the association between the score of the 9-item Self-Stigma Scale and HbA1c. Results: Questionnaires were distributed to 166 eligible participants. A total of 109 participants were included in the final analysis after excluding participants with incomplete answers and laboratory data. After adjusting for age, sex, employment status, body mass index, duration of diabetes and insulin secretion, there was a significant positive association between self-stigma and HbA1c (β = 0.05, 95% confidence interval 0.01 to 0.08). Conclusions: This cross-sectional study showed a significant association between self-stigma and HbA1c in persons with type 1 diabetes. Addressing self-stigma might be as equally essential as measuring HbA1c in evaluating glycemic outcome among individuals with type 1 diabetes.
... However, doctors and HCPs engaged in diabetes care have not always been fully aware that they could inadvertently promote self-stigma in their patients. Regarding advocacy for diabetes stigma, promoting awareness and education for clinical specialists is a primary target 28,29 . This study establishes that patients with diabetes have a higher KISS score in enacted and perceived discordant stigma than patients without diabetes. ...
Full-text available
Aims/introduction: The aim of this study was to develop a scale to evaluate disease stigma in patients with lifestyle-related chronic non-communicable diseases (LCNCDs), which we named the Kanden Institute Stigma Scale (KISS), and to consider its possible clinical application for patients with diabetes. Materials and methods: An initial 90 questions were drafted and categorized into six subscales according to the manifestations of stigma. The final version of the KISS was developed as a 24-item questionnaire comprising four items for each subscale. Results: A total of 539 outpatients including 452 patients with diabetes and 87 patients without diabetes were recruited. Construct validity was confirmed by assessing the correlation with previously established measures. Confirmatory factor analysis showed the KISS to have good model fitness (adjusted goodness-of-fit index = 0.856). Test-retest reproducibility analysis showed that the intraclass coefficient of the first and a second KISS was 0.843 (P < 0.001), indicating excellent reproducibility. The KISS showed higher scores for patients with diabetes than for patients without diabetes (12.23 ± 0.49 vs 5.76 ± 0.73, P < 0.05). The KISS score was significantly higher in type 1 and type 2 diabetes patients taking insulin therapy than in type 2 diabetes patients not taking insulin (P < 0.05). Conclusion: The KISS is a validated and reliable questionnaire for assessment of stigma among patients with diabetes as well as other lifestyle-related chronic non-communicable diseases, and might contribute to identifying and rectifying diabetes stigma, as well promoting awareness among health care professionals of this very consequential health problem.
... For example, diabetes organisations have historically approached stigma-reduction work by correcting 'myths' and 'misconceptions' about diabetes, 8,20 using high-profile individuals to communicate the needs and rights of persons living with diabetes, 8 and through political lobbying to address issues raised by those with diabetes, including issues related to inequities in insurance coverage, access to pharmaceuticals, driver's license standards and discrimination. 20,21 In the present study, we draw on the findings from deliberative democratic research performed with board members, healthcare services staff and communications and marketing staff from a single Australian state-wide diabetes organisation. The research specifically sought to identify how staff and board members from this diabetes organisation currently conceptualize the problem of diabetes-related stigma and how these conceptual understandings are used to justify existing stigma-reduction work or envisage future approaches to stigma reduction. ...
Full-text available
Introduction This study sought to identify how diabetes organisations conceptualize the problem of diabetes-related stigma and how this shapes the selection of stigma-reduction interventions. Methods A qualitative deliberative democratic methodology was used to access an informed dialogue about what should be done by diabetes organisations to address diabetes-related stigma, drawing from the perspectives of board members, healthcare services staff, and communications and marketing staff from a single state-wide diabetes organisation in Australia (n = 25). Results Participants navigated the stigma concept along two axes: one that drew attention to either disease attributes or personal moral attributes as the object of stigmatisation, and one that positioned stigma as an individual or structural problem. This shaped the selection of stigma-reduction interventions, which included interventions to: (i) reduce the prevalence of stigmatized attributes, (ii) correct misunderstandings about diabetes, (iii) modify representations of persons with diabetes, (iii) enhance coping amongst persons with diabetes and (iv) make healthcare more person-centred and democratic. Conclusion This study identified several grievances with ‘diabetes-related stigma’, which are grievances that can be conceptualized and addressed at both individual and structural levels, and involve correcting misinformation about diabetes or challenging and communicating alternative representations of persons living with diabetes. Patient or Public Contribution The organisation's management and board were consulted throughout all stages of research development, analysis and reporting. The information and vignettes presented to participants drew from illness narratives obtained from earlier research involving adults with type 2 diabetes. Research participants included adults with various diabetes types.
... Advocacy is an important mechanism that could potentially drive healthrelated policy development. Hilliard et al. (2015) developed the Diabetes Advocacy Framework, which covers four levels of engagement: individual actions to meet personal and family needs; community efforts to educate one's personal network or call for change in one's local area; national activities to increase awareness, raise funds and influence national policy; and international actions to achieve these goals on a global scale and provide assistance to resource-poor nations. ...
... Finally, although national and international diabetes guidelines ( American Diabetes Association, 2015;Delamater et al., 2014) recommend that psychological screening and referral to evidence-based therapies are an integrated into routine diabetes care and are adopted as "best practices" for children and their families living with T1D and T2D, this is part of standard clinical practice in very few diabetes care delivery settings in the United States ( Ducat et al., 2014). As psychologists and behavioral scientists, we are ideally suited to advocate ( Hilliard et al., 2015) more effectively for the integration of behavioral health screening and care into routine pediatric diabetes care and other health and mental health care settings as one critical step toward improving care and outcomes for people with diabetes locally and worldwide. ...
As members of multidisciplinary diabetes care teams, psychologists are well-suited to support self-management among youth with Type 1 diabetes (T1D) and Type 2 diabetes (T2D) and their families. Psychological and behavioral interventions can promote adherence to the complex and demanding diabetes care regimen, with the goals of promoting high quality of life, achieving optimal glycemic control, and ultimately preventing disease-related complications. This article reviews well-researched contemporary behavioral interventions to promote optimal diabetes family- and self-management and health outcomes in youth with T1D, in the context of key behavioral theories. The article summarizes the evidence base for established diabetes skills training programs, family interventions, and multisystemic interventions, and introduces emerging evidence for technology and mobile health interventions and health care delivery system interventions. Next steps in behavioral T1D intervention research include tailoring interventions to meet individuals’ and families’ unique needs and strengths, and systematically evaluating cost-effectiveness to advocate for dissemination of well-developed interventions. Although in its infancy, this article reviews observational and intervention research for youth with T2D and their families and discusses lessons for future research with this population. Interventions for youth with T2D will need to incorporate family members, consider cultural and family issues related to health behaviors, and take into account competing priorities for resources. As psychologists and behavioral scientists, we must advocate for the integration of behavioral health into routine pediatric diabetes care in order to effectively promote meaningful change in the behavioral and medical well-being of youth and families living with T1D and T2D.
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Entry-level programs are expected to support occupational therapy students in developing knowledge and skills pertaining to the change agent role. To do so, a detailed, multidimensional conceptualization of this role is necessary. To date, in the occupational therapy profession, there is no such conceptualization, which might impact educators' ability to conduct relevant pedagogical activities. Our study aimed to explore the dimensions of the change agent role for occupational therapy practitioners. We undertook a scoping study of the scientific and grey literature up to August 31, 2018 to "map" what is known about the change agent role. We searched nine databases, including Medline and CINAHL, varying combined keywords according to the database. We also manually searched reference lists and 12 relevant websites. We examined data using thematic charts and analysis. From the 33 documents analyzed, we identified two change agent configurations: social and clinical. The social configuration operates at the macro-level (society) and is aimed at optimizing health and social justice for communities or populations. Actions include lobbying, using media, and assuming a formal duty in an advocacy group. At the micro-level (clinical setting), the intent of the clinical configuration is to inform, sustain and promote individual decision-making and protect civil rights. This involves discussions with clients to understand their values and provide information about rights and options. To play the change agent role, occupational therapy practitioners must acquire a variety of knowledge and skills. To develop their students' ability to take on this important role, educators must tailor their pedagogical activities accordingly.
This study investigated diabetes management processes among young adults with type 1 diabetes applying the grounded theory method. A total of 15 young adults, with an average age of 29 years, with type 1 diabetes were selected through theoretical sampling between November 2016 and October 2018. Data collected through in-depth interviews were analyzed using the constant comparative method. The core category of this study was defined as “living in a standardized frame.” Participants managed diabetes through the trial-and-error process in addition to selective restriction or selective minimization. They restricted their diet, physical activity, social interactions, and range of thoughts, often following passive and avoidant strategies. Consequently, nurses are in a critical position to assist diabetic individuals via support programs and take the lead in mitigating social prejudice.
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For students pursuing a college degree in a health-related field, understanding the treatment and self-management of a chronic health condition may contribute to a more favorable educational outcome through use of active learning strategies such as case studies and immersion experiences.Self-management of diabetes during the transition from high school to college can be difficult. One college student who successfully mastered the transition from high school to college and recognized the challenges for young adults living with diabetes approached several university faculty members requesting the development of a course to educate, inform, and practice strategies that promote adaptation to independent living for those affected by diabetes. Faculty from nursing, medicine, and nutrition/health promotion accepted the challenge, thus forming a teaching team of three faculty members (one of whom is a certified diabetes educator) and an undergraduate student. Learning about diabetes beyond the walls of a diabetes educator's office requires resourcefulness in seeking opportunities. This unique and innovative approach could serve as a model, not only for assisting those living with diabetes during this important transition time, but also for empowering college students, especially health professions majors not living with the disease, to become peer supporters and better clinical managers of the disease in the future.
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The PhotoVoice method has shown substantial promise for work with youth in metropolitan areas, yet its potential for use with Latino youth from agricultural areas has not been well documented. This project was designed to teach environmental health to 15 high school youth while building their individual and community capacity for studying and addressing shared environmental concerns. The project also aimed to test the utility of PhotoVoice with Latino agricultural youth. Fifteen members of the Youth Community Council (YCC), part of a 15-year project with farmworker families in Salinas, CA, took part in a 12-week PhotoVoice project. Their pictures captured the assets and strengths of their community related to environmental health, and were then analyzed by participants. A multi-pronged evaluation was conducted. YCC members identified concerns such as poor access to affordable, healthy foods and lack of safe physical spaces in which to play, as well as assets, including caring adults and organizations, and open spaces in surrounding areas. Participants presented their findings on radio, television, at local community events, and to key policy makers. The youth also developed two action plans, a successful 5K run/walk and a school recycling project, still in progress. Evaluation results included significant changes in such areas as perceived ability to make presentations, leadership, and self-confidence, as well as challenges including transportation, group dynamics, and gaining access to people in power. The PhotoVoice method shows promise for environmental health education and youth development in farmworker communities.
Background: Research indicates that patients who self-advocate during the medical encounter gain maximum benefit. However, little is known about racial/ethnic differences in self-advocacy. Objective: We sought to examine whether race/ethnicity and obtaining health information are associated with self-advocacy (mentioned health information to physician and physician ordered tests based on health information). Methods: Study data were drawn from the 2000–2001 Household Component of the Community Tracking Study, a nationally representative survey. The study sample included 7419 women ages 45 to 64 who had at least 1 physician visit in the previous year. Binomial logit models were used to assess self-advocacy. Probability adjustments were applied to results. Results: In the full sample (n = 7419), women who obtained health information were almost 5 times more likely to mention that information to their physician (odds ration [OR] = 4.76, 95% confidence interval [CI] 4.05–5.60) than women who did not obtain information. Black women were less likely to mention health information to their physician (OR = 0.52, 95% CI = 0.37–0.73) than white women. Among women who obtained health information (n = 3690), black women also were less likely to mention health information to their physician (OR = 0.57, 95% CI = 0.40–0.83) than white women. Among those who mentioned health information to the physician, Hispanic women were more likely than white women to have a test/procedure/prescription prescribed (OR = 2.15, 95% CI = 1.10–4.20). However, after adjusting probability, this difference was not statistically significant. Conclusions: Although health information was associated with self-advocacy, black women were less likely to self-advocate. Further research is needed to better understand factors that impede black women from self-advocating.
G eralyn Spollett, President of Health Care and Education for the American Diabetes Association (ADA), is a busy nurse practitioner at a large New England medical school. Why did she cancel her patient hours to meet with training officers of a metropolitan police department? George Grunberger has a busy one-person diabetes private practice. As with most practicing physicians, his income depends on seeing patients. So what was he doing in a Washington, D.C., conference room discussing truck driver licenses on a busy weekday? “First of all, it gets me out of my office. I learn about new things, and the work is interesting and exciting,” Grunberger said. “Second, although much of it is pro bono , not all is. Consulting fees certainly make up much of the lost income from time away from the practice and broaden my business relationships. Third, my job as a physician and diabetologist is to help people with diabetes live their lives better. This is part of the job. If my patients are not able to work in their chosen professions, it directly affects their quality of life and, potentially, health insurance and ability to afford their diabetes supplies.” But, health care professionals (HCPs) do not have to give up office hours or travel to the nation's capital to be an effective advocate for their patients. There is a great deal we can do in our own hometowns. In the remainder of this article, the authors offer insights from their own experiences as advocates. Sam is a firefighter with type 1 diabetes in New York City, where I work. He was placed on desk duty and filed a suit against the Fire Department of New York City (FDNY) for discrimination under the Americans with Disabilities Act. He was referred to me for an independent medical …
Individuals with type 1 diabetes are at increased risk for depression, anxiety disorder, and eating disorder diagnoses. People with type 1 diabetes are also at risk for subclinical levels of diabetes distress and anxiety. These mental/behavioral health comorbidities of diabetes are associated with poor adherence to treatment and poor glycemic control, thus increasing the risk for serious short- and long-term physical complications, which can result in blindness, amputations, stroke, cognitive decline, decreased quality of life, as well as premature death. When mental health comorbidities of diabetes are not diagnosed and treated, the financial cost to society and health care systems is catastrophic, and the human suffering that results is profound. This review summarizes state-of-the-art presentations and working group scholarly reports from the Mental Health Issues of Diabetes Conference (7-8 October 2013, Philadelphia, PA), which included stakeholders from the National Institutes of Health, people living with type 1 diabetes and their families, diabetes consumer advocacy groups, the insurance industry, as well as psychologists, psychiatrists, endocrinologists, and nurse practitioners who are all nationally and internationally recognized experts in type 1 diabetes research and care. At this landmark conference current evidence for the incidence and the consequences of mental health problems in type 1 diabetes was presented, supporting the integration of mental health screening and mental health care into routine diabetes medical care. Future research directions were recommended to establish the efficacy and cost-effectiveness of paradigms of diabetes care in which physical and mental health care are both priorities. © 2015 by the American Diabetes Association. Readers may use this article as long as the work is properly cited, the use is educational and not for profit, and the work is not altered.