The Risky Bet Behind The First ‘artificial Pancreas’ For Diabetes Patients
Twelve years ago, a dotcom millionaire stood at a patient advocacy group’s board meeting and made an offer. I’ll give you $1 million, he said. But only if you commit to getting an artificial pancreas on the market. That challenge set JDRF, formerly known as the Juvenile Diabetes Research Foundation, on a costly, and risky, campaign to enlist academic researchers, global companies, members of Congress, and even federal regulators to embrace the concept of a device that could take over much of the process of regulating blood sugar in patients with diabetes. The campaign worked: The Food and Drug Administration last week approved the first artificial pancreas, from Medtronic, for patients over age 14 with type 1 diabetes. JDRF’s long crusade mirrors a trend in the patient advocacy world: Such groups are increasingly moving beyond traditional activism to fund research at drug and device companies. Those close ties with industry have sparked some criticism — mostly out of concern that advocacy groups won’t be able to freely fight for patients if their finances are tied to the fate of a corporate partner. But the expanding model may also help patients, if the advocacy groups succeed in pushing industry to get new treatments to market quicker. In the case of the artificial pancreas, JDRF was taking a very big chance. Academics had been trying for years to develop algorithms to power a fully automated system for regulating blood glucose, a task that again and again proved unfeasible. Device makers were squeamish about letting a computer control an insulin delivery system that could kill a patient if it malfunctioned at the wrong time. And even if somebody could build an artificial pancreas, no one knew what kind of tests and data the FDA would require to be convinced Continue reading >>
Diabetes Patient Advocacy Coalition (dpac) Summer Associate
Home / Diabetes Patient Advocacy Coalition (DPAC) Summer Associate Diabetes Patient Advocacy Coalition (DPAC) Summer Associate The Diabetes Patient Advocacy Coalition is seeking a DPAC Summer Associate to assist in two special summer projects: DPAC District Days and DPAC Elections Central 2018. You will work between 10 and 20 hours per week between May and August as an integral part of a small, but passionate team focused on diabetes policy education and advocacy. You will assist in the creation, implementation, and daily management of both programs. This is a remote work position, so candidates anywhere in the United States are encouraged to apply. Your keen knowledge of diabetes advocacy, love of U.S. politics and its impact on diabetes, and ability to work collaboratively is essential. As a public facing employee of DPAC, you will represent the organization on phone calls and emails to the diabetes community and policy makers. While having Type 1 diabetes is not a requirement, a deep understanding of the condition, knowledge of key diabetes organizations, and willingness to advocate for people with diabetes is mandatory. Current college student studying political science (major or minor) or marketing. Excellent verbal and written communication skills. Own a working computer with an internet connection. (DPAC does not supply or reimburse for either.) Familiarity with Google Docs, Forms, and Sheets. Knowledge of Salesforce and Wordpress a bonus, but not required. Highly organized, skilled in time management, and a proven ability to work independently. Position will be for up to 20 hours per week, but you must be available at least 10 hours weekly during Eastern time business hours between May and August. Continue reading >>
Diabetes Patient Advocacy
By Bennet Dunlap Father of Two T1 Kids and Diabetes Advocate (It is OK to Skip to the Shortcuts Below :-D) If you are on Garys email list, you know that learning to live with diabetes is not easy. We have all learned that just about everything makes diabetes care a little harder; activity, food, mood, attitude and more. It is an unwelcome addition to the list, but Ive got one more policy. Policy interacts with diabetes in many ways, at many levels. There are more than three dozen federal agencies that touch diabetes care, safety, access, and quality. State policy impacts schools, diabetes education, and even protocols to protect glucose testing from spreading infection in care facilities. Just as patient-healthcare teams create the best diabetes care, advocacy is the most successful when health professionals and patients work together. A Faster Cures white paper on health policy change says: The gold standard should be to have both scientific expertise and a group of patients who can speak both to the science AND the urgency needed to make change. Back to Basics Better policy happens when officials hear the real needs of constituents. But for many people who care about diabetes, learning the intricacies of advocacy is just one thing too many. That is totally fair. Somebody Needs to Make Diabetes Advocacy Shortcuts. Fortunately, the Diabetes Patient Advocacy Coalition (DPAC) can help. People who live with diabetes founded the Coalition with the goal of making policy actions easy. DPAC helps more voices speak on gaps in the diabetes policy landscape. The Diabetes Patient Advocacy Coalition works with the policy teams at the American Association of Diabetes Educators (AADE), American Association of Clinical Endocrinologist (AACE), and others. We write about advocacy with Continue reading >>
Glu : Patient Advocacy Amplifying The Voices Of T1d To Affect Change
Patient Advocacy Amplifying the Voices of T1D to Affect Change Last summer, I was privileged to attend the American Association of Diabetes Educators (AADE) annual conference in New Orleans with my Glu colleagues. With thousands of industry representatives, health care providers, advocates and experts in attendance, I met many fascinating people from throughout the diabetes community. One particularly inspiring individual I met that week was Bennet Dunlap, a type 1 parent like myself who has dedicated his lifes work to advocating for people with diabetes. Bennet has raised four children, two of whom have lived with type 1 diabetes for more than a decade. He is also a type 2 diabetic himself, currently managing this condition with a bicycle and metformin. After a career in banking, Bennet decided to pursue a masters degree in health communication in order to advocate for people with diabetes. Glu has partnered with Bennet and Christel Marchand Aprigliano, the co-founders of the Diabetes Patient Advocacy Coalition (DPAC) , to present a series of advocacy articles. You know Glu, so let us introduce to you DPAC. What is the Diabetes Patient Advocacy Coalition? DPAC was co-founded by Bennet and Christel to bring attention to diabetes policy. (Diagnosed in 1983 with Type 1 diabetes, Christel has served the diabetes community through The Diabetes Collective and The Diabetes UnConference , as well as her popular diabetes blog: The Perfect D .) The goal of DPAC is to make it easy for people with diabetes to add many more voices to calls for better diabetes policy. Successful policy advocacy is a long-term process. The coalitions role is an ongoing effort to keep policymakers attention on diabetes because they make decisions that have a huge impact on our lives. Patient voices a Continue reading >>
Advocacy Tools & Resources
Gain information and take action to influence the future of diabetes education and the role of the diabetes educator in health care. AADE works to advance policies that support the work of the diabetes educator, reinforce the critical importance of diabetes education, and remove barriers that may affect a person with diabetes from self-managing their diabetes. We support our members as they engage in state and federal initiatives to advocate for people with diabetes and the important role of the diabetes educator in the delivery of diabetes care. Download our Advocacy Guide , which features tips on how to take action on a wide range of advocacy issues, including identifying your members of Congress and opportunities for CB involvement in advocacy. Subscribe to the Advocacy Forum on My AADE Network. Connect with advocates, find out the latest advocacy news, post your questions, and get the latest information on AADEs advocacy initiatives through our blog posts and other resources. Check out AADE's latest Advocacy Update. This details AADE's advocacy activities in the past quarter. Get help communicating the facts of DSMT with your members of Congress and find valuable resources for your State and Federal Advocacy efforts. Continue reading >>
Diabetes Health Type 1: The Good And The Bad In Our Diabetes Advocacy World
Diabetes Health Type 1: The Good and the Bad in Our Diabetes Advocacy World Lets look at some recent examples of activism that have largely been driven by patients with diabetes and why these accomplishments are so exciting. There are three notable examples, which are as follows: Getting CMS Medicare coverage for CGMs was once seen as unlikely. We can thank patient advocacy for this 2017s decision by the Centers for Medicare & Medicaid Services (CMS) for Medicare/Medicaid coverage of Dexcom G5 continuous glucose monitoring systems for people with diabetes. Dexcom CGMs were previously labeled by the U.S. Food and Drug Administration (FDA), as an adjunctive device, meant to complement but not replace, the information obtained from more traditional fingerstick blood glucose monitoring systems. Essentially, the FDA previously determined CGM readings could not be used to make therapeutic treatment decisions (such as insulin dosages). Dexcom concluded that the best way to attain Medicare coverage of CGMs was to work within the confines of CMS, and in September 2015, it took the first step by requesting that the FDA re-label the G5 device as a therapeutic CGM which could technically be used as a replacement of fingerstick blood glucose testing for diabetes treatment decisions. Diabetes patient voices played a critical role in persuading the FDA to approve the new labeling request for the Dexcom G5 system. For example, in early July 2016, the diaTribe Foundation (see for the recommended letter text) began seeking signers for a letter it had drafted in support of the new label indication Dexcom was seeking, and it aimed to get at least 1,000 signers to the letter. Its letter was actually signed by over 10,000 people with diabetes and their families; see for details. diaTribe wa Continue reading >>
International Diabetes Federation - Advocacy
Diabetes is one of the major health and development challenges of the 21st century. No country, rich or poor, is immune to the epidemic. It is a chronic, incurable, costly, and increasing but largely preventable non-communicable disease (NCD), which is responsible for millions of deaths annually, debilitating complications, and incalculable human misery. As the legitimate global voice for people with diabetes, we are working to change this situation. Through coordinated advocacy at the global level and at the national level through our Members, we are working to effect change for the millions of people living with diabetes. During the last decades, IDF has been an instrumental actor in shaping the international agenda. You can read more about IDF and diabetes in the global agenda here . The International Diabetes Federation (IDF) is an umbrella organization of over 230 national diabetes associations in 170 countries and territories. It represents the interests of the growing number of people with diabetes and those at risk. The Federation has been leading the global diabetes community since 1950. Continue reading >>
The Diabetes Patient Advocacy Coalition
The Diabetes Patient Advocacy Coalition (DPAC) is new non-profit organization that isnt asking for your money, it doesnt cost anything to join, and they wont share your information. All the DPAC needsis your voiceas a person living with diabetes. New non-profit amplifies the voice of 29 million Americans with diabetes, influencing U.S. policy makers on issues of safety, quality, and access, explains DPAC recent press release. DPAC, a newly founded non-partisan not-for-profit organization, focuses on securing the access, safety, and quality of care, medications, and devices needed for 29 million Americans living with diabetes. DPACrecently announced its new advocacy portal to amplify the patient voice on diabetes issues to U.S. decision makers, explains the press release. With one out of every five U.S. healthcare dollars spent on treating patients with diabetes, policymakers must make fiscally responsible choices in diabetes policy while keeping patients healthy and safe. Through lobbying, constituent advocacy, and public awareness campaigns, DPACs unified diabetes voice will keep the challenges of daily life fresh in decision makers minds as they create and enforce policies. DPACs president, Bennet Dunlap, explains,Diabetes advocacy is much like diabetes management; both are long-term processes with no quick fixes, explains Bennet Dunlap, president of DPAC. The Advocacy Portal at provides anyone impacted by diabetes with an easy, simple, and effective way to hold decision makers accountable for their actions regarding our daily lives. Anyone impacted by diabetes can register here and quickly learn about the latest advocacy issue, reformation bills in development, and steps you can take as an individual to influence federal, state and agency representatives. Initial ac Continue reading >>
Diabetes Education And Advocacy | Smithsonian Institution
With the advent of insulin therapy, people living with diabetes had to learn a whole new set of skills. No longer were diabetes patients under the constant care of clinicians for their brief lives. Individuals, even children, learned to prepare and inject insulin, monitor diet and carbohydrate intake, administer glucose tests, and integrate these tasks into their daily lives. Diabetes specialists such as Dr. Elliot P. Joslin, founder of the Joslin Diabetes Center in Boston, Massachusetts, pioneered new approaches to patient education and the lifelong management of diabetes. Organizations, including the American Diabetes Association formed in 1940, arose to advocate for the needs of people living with diabetes, provide information and services, and support research into the prevention and cure of diabetes. The museum collection includes educational and advocacy materials in the form of handbooks, brochures and other literature. We actively seek material to augment this collection. Visiting Nurse assists a young boy in using insulin syringe, 1962. Credit: Visiting Nurse Service of New York. Patient information packet, Eli Lilly and Company, 1970s Continue reading >>
Diabetes Patient Advocacy Coalition
Now, more than ever, people living with diabetes need to come together to stand up for effective diabetes policy.Elected officials and regulatory agencies in federal and state governments affect our access to safe diabetes management. As patients and constituents, our voices need to be an ongoing part of the policy conversation.Diabetes advocacy is like diabetes care; both are long-term processes with no quick fixes. Diabetes is not "once and done," our advocacy cant be either. The Diabetes Patient Advocacy Coalition (DPAC) will make it easy to keep policy makers' attention on people with diabetes.DPAC will keep track of issues , opportunities and, when registered, how to contact officials . We will make it easy to advocate while giving you the opportunity to tell your own story. DPAC is a non-partisan organization amplifying the diabetes patient voice to U.S. decision makers. DPAC focuses on safety, quality, and access to care. Current and upcoming advocacy efforts include: Coming: Campaign for coordination of agency actions on diabetes. Coming: Advocacy in support of artificial pancreas. Continue reading >>
Congressional Members Join The Diabetes Patient Advocacy Coalition In Call For Immediate Suspension Of Medicare's Bidding Program
Congressional Members Join the Diabetes Patient Advocacy Coalition in Call for Immediate Suspension of Medicare's Bidding Program The Centers for Medicare and Medicaid Services to Roll Out Updated Program on July 1 TAMPA, Fla., June 28, 2016 /PRNewswire-USNewswire/ -- Last week, the Diabetes Patient Advocacy Coalition (DPAC), an alliance dedicated to promoting and supporting public policy initiatives that improve safety, quality and access for people with diabetes, joined the Congressional Diabetes Caucus and Congressional Black Caucus for a briefing on Capitol Hill to discuss how Medicare's bidding program for diabetes testing supplies has failed and should be immediately suspended. According to a peer-reviewed article that appeared in the American Diabetes Association's journal, Diabetes Care, the program has caused increased mortality, hospital admissions and higher costs. "The Centers for Medicare and Medicaid Services has said repeatedly that the program is a success," said Christel Marchand Aprigliano, co-founder of DPAC, Type 1 diabetes patient and panelist during the Hill briefing on June 20. "Now we have scientific proof that Medicare is lying to beneficiaries, Congress and the American people." Beginning July 1, many Medicare beneficiaries will again experience a potentially life-threatening disruption in access to diabetes testing supplies during an updated rollout of the bidding program. This will cause another cycle of confusion and force many older adults on Medicare to once again change how they receive their testing supplies or switch brands. Aprigliano was joined on the panel by the Honorable Nancy Johnson, former Chair of the Health Subcommittee of the House Ways and Means Committee; Gary Puckrein, PhD, President and CEO of the National Minority Quali Continue reading >>
Diabetes Advocacy Alliance
Our mission is to unite and align key diabetes stakeholders and the larger diabetes community around key diabetes-related policy and legislative efforts in order to elevate diabetes on the national agenda. The Academy of Nutrition and Dietetics (AND), formerly the American Dietetic Association, is the world's largest organization of food and nutrition professionals. AND is committed to improving the nation's health and advancing the profession of dietetics through research, education, and advocacy. For more information, visit www.eatright.org . The Diabetes Advocacy Alliance is working to increase awareness of, and action on, the diabetes epidemic among legislators and policymakers. We are a diverse group of patient advocacy organizations, professional societies, trade associations and corporations, sharing a common goal to defeat diabetes. Explore our site to learn more about what's on the front burner in our communications with Capitol Hill and the Administration. The Diabetes Advocacy Alliance (DAA) has public policy and legislative priorities in three areas: prevention of type 2 diabetes; improved screening and detection of those adults with prediabetes, undiagnosed diabetes, and gestational diabetes; and improved care for people whose diabetes has been diagnosed. A summary of DAA advocacy priorities is presented in this document: Advocacy Priorities in 2018 . Continue reading >>
How The Type 2 Diabetes Patient Community Is Unifying Their Voice Online
How the Type 2 Diabetes Patient Community is Unifying their Voice Online While online conversations about diabetes are on the rise and people with diabetes have cultivated the Diabetes Online Community ( #DOC ) as a way to connect with one another, those living with type 2 diabetes seem to play a less active part in the dialogue. To help strengthen and elevate the voices of type 2 diabetes advocates, AstraZeneca recently hosted members of the type 2 community forDiabetesLinkup: In It 2gether. The #DiabetesLinkup provided an opportunity for type 2 diabetes online influencers and patient advocacy groups to map out the existing challenges to engaging people living with type 2 diabetes online and work together to identify solutions. Those of us living with type 2 diabetes want to connect with one another to share experiences and connect to resources, but the diabetes burnout is real and many of us have lower levels of engagement due to emotional and social barriers, shared Dr. Phyllisa Smith Deroze, of Diagnosed not Defeated . Mark Freeman, co-creator of the mental health online community Everybody Has a Brain, sparked the discussion with insights that have helped him to become an established patient advocate and blogger. In particular, Mark acknowledged the hurdles that stigma can present to discussing aspects of our health openly, and encouraged tackling the issue head on. Stigma is a squirrel wearing a scary mask. Behind that mask is a squeaky little voice and we cant let it stop us from connecting with one another. He went on, No one has ever gotten rid of stigma by staying quiet and waiting for it to go away. Mark pointed to the strength that online communities can provide for those managing illness, and reinforced that building greater support online for those living Continue reading >>
15 National Patient Advocacy Organizations Urge Congress To Oppose The Aca Repeal And Take A Bipartisan Approach To Reform
15 national patient advocacy organizations urge Congress to oppose the ACA repeal and take a bipartisan approach to reform 15 nonpartisan patient and provider groups representing millions of Americans issued the following statement today on the Senates proposal to repeal the Affordable Care Act (ACA): Any attempt to repeal the ACA without replacing it with equal or better coverage will leave our health care system in shambles. If the existing law is abolished, 32 million Americans could lose their insurance coverage in the next decade. This approach is completely unacceptable for the patients we represent. Many of these Americans are low-income or struggle every day with pre-existing health conditions, and have come to rely on the coverage the law has provided. The ACA is not perfect, however, and we agree that long-term improvements need to be made, along with immediate action to stabilize the marketplaces. When both sides of the aisle work together, they have always found the most durable and long-lasting solutions to the problems facing our country. We implore lawmakers to sit down in a bipartisan fashion and draft a new bill that will strengthen and expand access to affordable and adequate health care coverage. The groups included the American Diabetes Association, American Cancer Association Cancer Action Network, American Heart Association, ALS Association, American Lung Association, Arthritis Foundation, Cystic Fibrosis Foundation, Family Voices, March of Dimes, Multiple Sclerosis Society, Muscular Dystrophy Association, National Health Council, National Organization of Rare Disorders, Women Heart, and Volunteers of America. Nearly half of American adults have diabetes or prediabetes; more than 30 million adults and children have diabetes; and every 21 seconds, Continue reading >>
Diabetes Patient Advocacy Coalition Urges Immediate Suspension Of Medicare's Bidding Program
Diabetes Patient Advocacy Coalition Urges Immediate Suspension of Medicare's Bidding Program Alliance Calls on Diabetes Community to Write Congress and Demand CMS Examine its Deadly Program TAMPA, Fla., April 5, 2016 /PRNewswire-USNewswire/ --The Diabetes Patient Advocacy Coalition (DPAC), an alliance dedicated to promoting and supporting public policy initiatives that improve safety, quality and access for people with diabetes, today announced the launch of a campaign to immediately suspend Medicare's bidding program for diabetes testing supplies. DPAC is urging the more than 29 million U.S. families impacted by diabetes and all Americans to contact their senators and representatives via the campaign's online headquarters ( www.DiabetesPAC.org/SuspendBidding ) to seek immediate action to save lives. The Centers for Medicare and Medicaid Services (CMS) Competitive Bidding Program was established under the Medicare Prescription Drug, Improvement, and Modernization Act of 2003. The intent of the program was to reduce the cost of diabetes testing supplies for the government and for beneficiaries, while preserving the quality of and access to blood glucose meters and strips, testing equipment that is critical to the successful management and care of diabetes. However, an article appearing in the American Diabetes Association's peer-reviewed journal, Diabetes Care, confirms what the community has known all along: the program is a failure. "We have long suspected that Medicare's bidding program was not working," said Christel Marchand Aprigliano, co-founder of DPAC and Type 1 diabetes patient. "This new study shows that the bidding program is causing confusion, diminishing access to high-quality supplies and that, in turn, is leading to needless suffering and, unfortunately, Continue reading >>
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