Diabetes Advocacy Orgs: 2017 Achievements & 2018 Plans! (Part 2)

Ever wonder what kind of impact the leading diabetes advocacy organizations are really having? So do we.

That’s why it’s a tradition here at the ‘Mine at the start of each new year to ask a group of the most influential U.S. diabetes nonprofits point-blank: What did they actually achieve over the past year? And what do they plan to make happen in the year ahead?

American Diabetes Association (ADA)

2017:

Protecting Access to Affordable Care: Throughout the year, the ADA worked to keep in place the patient protections that the Affordable Care Act (ACA) enacted and to ensure that people with diabetes had access to adequate, affordable health coverage. The ADA took a strong public stance, releasing several media statements throughout the year and sending letters to Congressional leadership to urge for comprehensive solutions. The Federal Affairs team met with Congressional staff on both sides of the aisle, and we activated our network of nearly half a million diabetes advocates to raise their voices through direct contact with their representatives. Additionally, we worked alongside several leading patient and consumer organizations on coalition efforts to emphasize the impact that ACA repeal would have on people living with chronic illnesses. Despite the recent repeal of the individual mandate in the 2017 Tax Cuts and Jobs Act, the ADA will continue to work with Congress to ensure that health care policies address the needs of people with or at risk for diabetes.

77th Scientific Sessions: Our annual Scientific Sessions continued to bring together the world’s best and brightest scientific minds to share cutting-edge research on nearly every aspect of diabetes. Hosted in San Diego this year, the five-day meeting drew nearly 17,000 researchers, physicians, health care professionals, advocates and media to discuss the latest and most important research findings. Highlights from the sessions can be found on our blog here.

Diabetes is Not a Choice: In May, White House Office of Management and Budget Director Mick Mulvaney made comments about people with diabetes that perpetuated the stigma that one chooses to have diabetes based on his/her lifestyle. We felt these comments were inappropriate given our knowledge of the science behind diabetes, and also opposed any implication that access to health care should be rationed or denied to anyone, regardless of their health status. We responded swiftly, taking this opportunity to educate the public and our nation’s leaders on the many risk factors that can lead to diabetes and to change the national dialogue about this chronic illness that affects 1 in 11 Americans. With our “Diabetes is Not a Choice” campaign, we are dispelling myths and misconceptions about diabetes and telling the world that no one chooses this disease.

Hurricane Relief for People with Diabetes: In response to the catastrophic impact of Hurricanes Harvey, Irma and Maria, the ADA convened leading diabetes organizations to address the needs of people with diabetes, many of whom had no electricity, suffered severe damage to their homes, or were evacuated to shelters. Given these conditions, many were faced with the reality of not having sufficient insulin, insulin supplies, glucose testing equipment or other medications as required to maintain health. Working together, the Diabetes Emergency Relief Coalition (DERC)—comprised of the ADA, JDRF, Insulin for Life USA, Endocrine Society, American Association of Clinical Endocrinologists, American Association of Diabetes Educators, Research! America and T1D Exchange —provided thousands of pounds of diabetes supplies to people in Texas, Florida, Louisiana, Puerto Rico and the Caribbean.

National Diabetes Prevention Program Expansion: The Centers for Disease Control and Prevention (CDC) awarded the ADA a five-year, cooperative agreement to support the expansion of the National Diabetes Prevention Program (National DPP) to underserved areas in the U.S. In the first year of the award, the ADA will lead program expansion at five sites in Arizona, California and Texas. The ADA’s multi-state network will be available to anyone with prediabetes, and the sites selected will be in areas of most need to serve Hispanic and older adults with prediabetes and where there are limited or no access to existing National DPP providers. The ADA’s multi-state network will seek to reach 1,000 individuals in the first year across all five sites.

2018:

We will continue to fight to protect the rights of people with diabetes through our legal advocacy efforts on the federal, state and local level. We will raise our collective voices to ensure that people with diabetes have access to adequate, affordable care and that funding for diabetes research is increased and that the diabetes epidemic is a national priority for our nation’s leaders. We will debut new resources for people living with and at risk for diabetes, including the living Standards of Care; interactive online tools for newly diagnosed type 1 families; and an online Food Hub with diabetes-friendly recipes and nutritional information.

Diabetes Research Institute (DRI)

2017:

Continuing our sole focus on discovering a biological cure, the DRI made progress in its three key BioHub research areas – Site, Sustainability and Supply – and received FDA approval to proceed with several new clinical trials, and others pending approval, the majority of which will test innovative immunotherapies to combat the immune system in T1D.

Sustainability – progress made in otherresearch projects aimed at halting autoimmunity and protecting transplanted islets includes:

Site:

Supply:

DiaTribe Foundation

2017:

Speaking & Outreach: Kelly and Adam delivered and led over 30 speeches and panel discussions at influential conferences throughout the year. Their commitment to education and advocacy has resulted in speaking engagements all over the world, from Washington D.C. to Lisbon to Abu Dhabi. In addition, Kelly Close wrote over 25 blog posts, which feature her insights and opinions on public health issues ranging from soda taxes to how built environments affect individual and societal health.

Staffing and the TdF Board: In 2017, we were excited to hire our first Managing Director to The diaTribe Foundation, as well as three new associates. We were also thrilled to welcome Marjorie Sennett to the Foundation’s board of directors, not to mention IDEO’s Dennis Boyle, who joined the board in early 2017.

2018:

Here is just a taste of our goals on several key programs:

Anthology of Bright Spots Public Launch: We look forward to sharing this resource with as many groups as possible. By the end of 2018, our goal is for Bright Spots & Landmines to be in the hands of well over 50,000 people. Our team also hopes to publish an mmol/L version, a flash card version, and an audio version.

2018:

The three tenets of JDRF’s Advocacy Agenda will continue to serve as a basis for JDRF’s evolving advocacy efforts in 2018.

Advocacy:

  • Supporting Technology, Treatment & Cure Research:
    • Development of new cell encapsulation materials that could allow for successful long-term cell replacement therapies
    • Development of novel insulins targeted to the liver to mimic non-diabetes-like physiology
    • Understanding causes of hypoglycemia through retrospective analyses of clinical trial and real-world data sets in a large public-private partnership, and identifying corrective therapies to significantly reduce the incidence of all hypoglycemic episodes
    2018:

    Advocacy and Representation: We will continue to advocate for open source solutions at the ADA, AADE, CWD FFL and DiabetesMine annual conferences by providing information, presentations and hands on build sessions with industry leaders, healthcare professionals and end users. We will also be LIVE-Streaming T1D related events, conferences, and tech shows to our worldwide community to expand the knowledge of available open source solutions.

    Scholarships: Our goal is to expand the number of candidates and amounts given for scholarships in 2018.

    Legal Protection: The Foundation will continue to provide intermediary services and protection for developers at their request.

    Fundraising: As the Nightscout Foundation does not receive funding from the medical device industry, pharmaceutical industry, or any T1D-related entity, all fundraising efforts are community focused and supported.

    Encourage T1D Tech Projects: We will hold two Foundation Hackathons in 2018, along with a new feature of an ‘End User Build Day’ that will follow one or both of the Hackathons, where community members will be able to gather to build some of the latest and greatest tech solutions from our worldwide community. We will also continue to provide resources (based on funding) to T1D-related tech projects and endeavors worldwide.

    2018:

    Our big challenge for 2018 in addition to reaching more PWD in cities across America, is to grow our online presence. Our new web site is just in the first phase with lots more to come. We have diabetes-knowledgeable folks working on content including videos and our blog. Our overarching goal is to truly touch and improve the lives of people living with diabetes and importantly also the folks who care and worry about them.

    What about you, Diabetes Community?

    Anything you’re happy or not-so-pleased about for this past year as to the work of these D-orgs have done, or that you’d really like to see them address in the year ahead?

    This content is created for Diabetes Mine, a leading consumer health blog focused on the diabetes community that joined ishonest Media in 2015. The Diabetes Mine team is made up of informed patient advocates who are also trained journalists. We focus on providing content that informs and inspires people affected by diabetes.

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