832867

article-commentary2019
DSTXXX10.1177/1932296819832867Journal of Diabetes Science and TechnologyGarrison et al.

Proceedings of Meetings / Conferences

Journal of Diabetes Science and Technology

Creating a Legion of Diabetes

2019, Vol. 13(5) 990­–991
© 2019 Diabetes Technology Society
Article reuse guidelines:
Patient Advocates: DPAC Policy sagepub.com/journals-permissions
DOI: 10.1177/1932296819832867
https://doi.org/10.1177/1932296819832867

Training Meeting and Hill Day journals.sagepub.com/home/dst

Laurel E. Garrison, MPH1, Erin Bubb1, Moira McCarthy1,

and Christel Marchand Aprigliano, MS1

Abstract
The Diabetes Patient Advocacy Coalition (DPAC) held a Policy Training Meeting and Hill Day September 29-October 1,
2018, in Washington, DC. Attendees were members of DPAC’s Board of Directors and Staff, Patient Advisory Board, and
individuals identified through a competitive call for applicants on DPAC’s website and social media. We were joined by
advocates from the Association of Black Cardiologists and the Endocrine Society. The Policy Training Meeting focused on
teaching citizen advocates how to share their stories with legislators while integrating facts and statistics to reinforce their
experiences. After two days of training, we met with our legislators on Capitol Hill to discuss two closely related issues:
access to affordable insulin and diabetes self-management training. The partnership of patient advocates and health care
providers was a powerful tool to get our message across. Meetings like this encourage open discussion and networking as
well as education regarding individual advocacy. They are an effective way to bring people together as allies for the diabetes
community. DPAC plans to hold additional Policy Training Meetings to develop leaders in each state who represent the voice
of people living with diabetes.

Keywords
advocacy, legislation, patients, training

The Diabetes Patient Advocacy Coalition (DPAC) is an alli-
ance of people with diabetes, caregivers, patient advocates,
health professionals, disease organizations, and companies
working collaboratively to promote and support public pol-
icy initiatives to improve the health of people with diabetes.
DPAC seeks to ensure the safety and quality of medications,
devices, and services; and access to care for all 30.3 million
Americans with diabetes. It is our vision to empower people
to use their voices to effect change in their communities,
states, and at the national level. In order to build a network of
effective advocates, we held a Policy Training Meeting and
Hill Day September 29-October 1, 2018, in Washington, DC.
Attendees were members of DPAC’s Board of Directors
and Staff, Patient Advisory Board, and individuals identified
through a competitive call for applicants on DPAC’s website
and social media. The participants provided a cross-section
of the community: over 30 attendees including people with
type 1 and type 2, caregivers and passionate family mem-
bers, ranging from 19 to over 75 years of age. We were joined
by advocates from the Association of Black Cardiologists
and the Endocrine Society. The meeting was sponsored by
industry leaders Lilly, Merck, Janssen, and Novo Nordisk.
Many attendees had extensive experience with diabetes
advocacy and were willing to share and help train those who
were relatively new. We learned from each other. “The DPAC
conference was an amazing opportunity to dig deep and learn
hard,” said Alice Dorn, mother of a 17-year-old with type 1
diabetes. “I thoroughly enjoyed having my brain stretched in
ways I had not before. I had the opportunity to think about
insulin affordability from several perspectives instead of the
one I am most used to—the mom.”
The Policy Training Meeting focused on teaching citizen
advocates how to share their stories with legislators while
integrating facts and statistics to reinforce their experiences.
Topics included best practices for using social media, media
training, relationship building, and what to expect during
meetings with legislators. State advocacy was also discussed,
with special emphasis on how to organize people and address
legislative issues at home.
After two days of training, we joined diabetes physicians
and scientists from the Endocrine Society and split into teams
to meet with our legislators on Capitol Hill. We focused on
1
Diabetes Patient Advocacy Coalition, www.diabetespac.org, Tampa, FL,
USA
Corresponding Author:
Laurel E. Garrison, Diabetes Patient Advocacy Coalition, www.
diabetespac.org, 12157 West Linebaugh Avenue, Suite 141, Tampa,
FL 33626, USA.
Email: laurelegarrison@gmail.com
Garrison et al. 991
two closely related issues: access to affordable insulin and
diabetes self-management training. According to a nationally
representative survey, the average cost patients paid for insu-
lin tripled between 2002 and 2013.1 A complex prescription
drug supply system has encouraged rising costs and has
resulted in access challenges for the 8.1 million Americans
who need affordable insulin.2 The congressional diabetes cau-
cus is currently conducting an investigation into the prescrip-
tion drug supply chain to determine where access challenges
are the greatest. We asked our legislators for their support by
joining and actively participating in the diabetes caucus and
sharing the results of this investigation with their constituents.
We also explained the current bill Expanding Access to
Diabetes Self-Management Training (DSMT) Act of 2018
(HR 5768 / S 6633). This bill will help remove barriers to dia-
betes self-management training and medical nutrition therapy
for Medicare beneficiaries, increasing adherence to treatment
plans and therefore maximizing outcomes while minimizing
cost to the health care system. The bill has bipartisan agree-
ment and support; we asked our legislators to add their
cosponsorship. Dorn said that the event opened her eyes to
the challenges others face in life with diabetes; it floored her.
“Considering the challenges faces by those on Medicare and
their lack of access to DSMT was staggering.”
We shared our stories as patients, caregivers, and health
care providers from our own unique perspectives. We
explained how much we are paying for insulin and the diffi-
cult choices we must make with regard to employment and
spending on other necessities in order to afford the medicine
we need to live. Health care providers provided examples of
the difficulties their patients currently face in accessing the
training they need to learn how to take care of their diabetes.
The partnership of patient advocates and health care provid-
ers was a powerful tool to get our message across.
At the end of the day, we left Washington, DC, with the
confidence and knowledge we needed to empower others in
our communities to stand up and be advocates with us. One by
one, we are connecting to others who share our passion to be a
force for change by promoting and supporting policy initiatives
in our own states. Meetings like this encourage open discussion
and networking as well as education regarding individual advo-
cacy. They are an effective way to bring people together as
allies for the diabetes community. Dorn, like others, left
inspired and ready to do more. “I learned how to change hearts
and minds by telling my story—not just with emotion but also
with facts,” she said. “The three days in Washington, DC left
me tired and inspired. Inspired to advocate more, challenge
myself more, and to think outside the box for solutions.”
Members of DPAC have already had follow-up meetings
with state officials, begun to look at patterns of needs in their
state, and started processes to effect change at home in their
communities. DPAC plans to hold additional Policy Training
Meetings to develop leaders in each state who represent the
voice of people living with diabetes. While DPAC is a
US-based advocacy organization, similar trainings could be
offered to those wishing to advocate for policy change in any
country. “The secret to change is to not focus all of your
energy on fighting the old, but on building the new,” said
Socrates. DPAC believes that the community needs passion-
ate advocates focused on working with policy makers on fed-
eral, state, and local levels in the areas of safety, quality, and
access. As the only patient-run organization providing mul-
tiple opportunities to speak up on several policy issues
impacting those with diabetes, we often collaborate with
other major diabetes nonprofits (both professional and
patient organizations) when appropriate. As a coalition, we
look to partners for aligned policy efforts and capitalize on
our ability to act as an umbrella policy organization for the
US diabetes community. To turn your passion for change into
action and help build a better life for people living with dia-
betes, please visit the DPAC website (www.diabetespac.org)
and start advocating today.
Abbreviations
DPAC, Diabetes Patient Advocacy Coalition; DSMT, Diabetes
Self-Management Training.
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts of interest
with respect to the research, authorship, and/or publication of this
article: DPAC funded travel to the Policy Training Meeting for all
authors. Christel Marchand Aprigliano is a full-time employee of
DPAC.
Funding
The author(s) disclosed receipt of the following financial support for
the research, authorship, and/or publication of this article: DPAC
funded travel to the Policy Training Meeting for all authors.
References
1. Hua X, Carvalho N, Tew M, Huang ES, Herman WH, Clarke
P. Expenditures and prices of anti-hyperglycemic medications
in the United States: 2002-2013. JAMA. 2016;315:1400-1402.
2. Cefalu WT, Dawes DE, Gavlak G, et al. Insulin access and
affordability working group: conclusions and recommenda-
tions. Diabetes Care. Aug 2018; 41(8): 1831-1831.