Creating a Legion of Diabetes Patient Advocates: DPAC Policy Training Meeting and Hill Day

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.

The Diabetes Patient Advocacy Coalition (DPAC) is an alliance of people with diabetes, caregivers, patient advocates, health professionals, disease organizations, and companies working collaboratively to promote and support public policy 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 members, 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 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 insulin 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 caucus is currently conducting an investigation into the prescription 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 diabetes 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 agreement 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 difficult 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 providers 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 advocacy. 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 passionate advocates focused on working with policy makers on federal, state, and local levels in the areas of safety, quality, and access. As the only patient-run organization providing multiple 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 diabetes, please visit the DPAC website (www.diabetespac.org) and start advocating today.