Our daughter Nora was diagnosed with type 1 diabetes when she was two years old. While her diagnosis was initially a shock, over time, life with diabetes has become second nature to us and caring for Nora has made our family stronger. Nora is now five years old and will be entering kindergarten next year. Our neighborhood school (where our older son attends) does not have a full-time nurse, but we weren’t overly concerned about this since we knew we had the right to find a staff person to handle Nora’s care. We’d had positive experiences with training staff to care for her in preschool, so we were hopeful that the transition into our neighborhood school for kindergarten would be just as positive.
We initially contacted one of the kindergarten teachers and asked if she’d consider being trained to handle Nora’s care. She was very supportive, and happily agreed. A few weeks later, however, she approached us and said that she’d spoken with the school nurse supervisor, who had strongly advised her not to assume this role. The nurse gave her several reasons why it would be a difficult and dangerous task for her to undertake; therefore, she no longer felt comfortable accepting the responsibility.
Following this event, we had a meeting to discuss our options with the nurse supervisor and the administration of our school. The nurse spoke at length about why our school was not equipped to take care of Nora without a full-time nurse. The school also ruled out teachers, administration, office staff and aids as options for training staff to provide care—if you’re thinking there’s no one left to ask, you’re right. They highly recommended that we research the two closest schools to us that do have full-time nurses. The nurse called this a “medical necessity,” saying that if we opted to transfer schools, she would help ensure that our two other children could transfer to the new school as well. We left the meeting feeling discouraged, but were willing to check out the other schools.
Eventually we made the decision that one of those schools really was the best option for our kids. It was close, it had full-time nursing, an excellent reputation and there were several other children with diabetes attending whose families would be a great community for us. After informing the district nurse of our choice, we were told the nurse at our desired school had a “full caseload” of students with medical needs, so they were denying our family’s application on the basis of Nora’s diabetes. The “good news” was that there was room for all three of our kids to go to another school with a full-time nurse (a school we had not chosen).
At this point we began to feel pushed around, even manipulated by the school district. We contacted the American Diabetes Association for help and we made an appointment with two officials at the district level to discuss our experience thus far. An attorney from the ADA provided us with relevant legal information and guided us to the appropriate resources, which helped us realize that the school district hadn’t complied with Section 504 and the Americans with Disabilities Act on more than one count. Denying a student admission based solely on their disability is a prime example.
Thanks to the ADA’s advice and our thorough research, we felt equipped to argue our case when we met with the school district. When we made it clear that we believed our school of choice was best for Nora and that the law was on our side, the district officials listened and there was minimal pushback. They apologized for our experience, and by the end of the day they had reserved spots for all three of our kids at the school we had chosen.
When we first walked into our neighborhood school to register Nora for kindergarten, we weren’t expecting (nor did we want) a fight. As a mother of a child with a “disability,” it is not fun to have to fight for my child to have basic rights: to be welcomed and included at school, to learn in safety, to go to school alongside her friends and siblings, to just be a kid. While we may not want to have to fight for our kids, what I learned through this experience is that the battle is worth fighting. And while we shouldn’t have to fight, I learned that we can. We don’t have to be transferred all over the city, or take everything we are told by school and district officials at face value. If something doesn’t feel right, it is worth seeking counsel from the ADA and other advocates. The fight for your child is always worth it, and I’m so grateful that I chose to fight for mine.
–Hannah and Jordan Bemis
The American Diabetes Association leads the effort to prevent and eliminate discrimination against people with diabetes at school, at work and in other parts of daily life. If you need help, call 1-800-DIABETES or visit diabetes.org/gethelp.
Through our nationwide Safe at School® program, the Association is dedicated to making sure that all children with diabetes are medically safe at school and have the same educational opportunities as their peers. Visit our Safe at School website for information and resources.
Forestry Major, Mary Murdock, was excited to receive her welcome packet from AmeriCorps National Civilian Community Corps (AmeriCorps NCCC) in the Spring of 2017. It meant that she was chosen to be a member of a full-time, residential, team-based community service program for young adults, that would take her on a 10-month journey to strengthen communities across the country. Her chance to embark on this journey, however, was threatened because of her diagnosis of type 1 diabetes. After submitting her medical information to AmeriCorps NCCC, she was told that she could not be cleared to join the 2017 Class because her diagnosis was quite new, and they wanted her to show stability on insulin therapy for at least one year before she could be cleared. This would mean putting her life and aspirations on hold for almost a full year.
Mary did not think this was right. She was managing her diabetes exceptionally well and had not experienced any complications. Although she had only been living with diabetes for a few months when she applied, she knew intimately well what living with diabetes was like and how to manage it and thrive with it. Her dad has lived with type 1 diabetes for 45 years.
Upset about this setback, Mary contacted our Legal Advocacy Department to learn about her rights. A Legal Advocacy attorney explained to Mary that qualified individuals with diabetes have the right to participate in federal programs such as AmeriCorps NCCC under the Rehabilitation Act of 1973. Our attorney explained what the law requires of these programs in order to avoid discrimination and that excluding her on the basis of unwarranted fears or generalizations is illegal.
With assistance and support from our Legal Advocacy attorney, Mary went through an initial appeal to a Medical Board and a subsequent appeal of the Board’s denial, before she finally learned that she was cleared for service. Mary was grateful for the assistance she received from Legal Advocacy: “Thanks again for everything you have done for me along the way, this would not have even happened without your help and support.”
Mary recently shared with us what her service experience as an AmeriCorps NCCC member living with type 1 diabetes was like:
“The AmeriCorps pledge states:
I will get things done for America – to make our people safer, smarter, and healthier. I will bring Americans together to strengthen our communities. Faced with apathy, I will take action. Faced with conflict, I will seek common ground. Faced with adversity, I will persevere. I will carry this commitment with me this year and beyond. I am an AmeriCorps member, and I will get things done.
When I took this pledge, I felt very determined to show that I could make a difference in America, despite my diabetes.
I will get things done for America – to make our people safer, smarter, and healthier. I had the chance to serve five unique communities in my 10 months in AmeriCorps NCCC: the heart of Cherokee Nation, disaster relief in Houston, serving on a National Guard base, working in a school in Ferguson, and working at a botanical garden in rural Missouri. I had the chance to enter communities and help to create real change.
I will bring Americans together to strengthen our communities. I also felt I had the opportunity to educate and prove that people with diabetes can do whatever they put their minds to. While I faced challenges trying to juggle caring for my diabetes while moving every six weeks and doing tasks from running a chainsaw all day, to mucking and gutting houses, I also felt that I needed to prove myself and also give my best to the communities I had the chance to serve.
Faced with adversity I will persevere. AmeriCorps NCCC gave me the opportunity to help prove to myself that I can do whatever I put my mind to. I now am serving in a new way as a forester and, without my AmeriCorps journey, I do not think I would be the same person I am today. I am so glad I fought for my right to serve and had an amazing 10-month adventure, and the opportunity to continue to serve. I will carry this commitment with me this year and beyond. I am an AmeriCorps member and I will get things done.”
Since 1952, the ADA has supported scientists and the life-saving research they conduct to ensure people with diabetes can live life to the fullest. Your support of scientists like the individuals below and the research they conduct helps ensure our vision of life free of diabetes and all its burdens will one day become a reality. Click on the link to donate today to this important work and your gift will be match: http://bit.ly/2KxlnsU
2008: Dr. Vera Novak links changes in brain structure and memory to poorly controlled diabetes, showing that better glucose management can prevent the adverse effects in humans. Support researchers like Dr. Novak by donating today and the Amaranth Diabetes Foundation will match your gift.
2011: Dr. Robert Toto identifies new biomarkers helping to identify patients with or at risk for chronic kidney disease, enabling us to treat these patients more efficiently. Support researchers like Dr. Toto by donating today and the Amaranth Diabetes Foundation will match your gift.
2014: A landmark paper is published demonstrating significant reductions in diabetes complications including heart disease, stroke, amputation, kidney disease and hyperglycemic crisis. Continue to drive capstone discoveries like these by donating towards research today and the Amaranth Diabetes Foundation will match your gift.
2018: Amaranth Diabetes Foundation supports Dr. Jenny Kanter and her research aimed at identifying new therapeutics to prevent diabetes related heart disease. Continue to fuel the work of researchers like Dr. Kanter by donating today and the Amaranth Diabetes Foundation will match your gift.
The Prince Hall Shriners (PHS) is one of the world’s largest black fraternal organizations, with more than 25,000 members in the U.S.
Over the last 10 years, the Prince Hall Shriners organization has partnered with the American Diabetes Association as part of their National Diabetes Initiative to support diabetes research and educational outreach, including:
Donating funds each year for diabetes research and education resources,
Sponsoring several productions of “Mama’s Girls,” a play that teaches audiences about how diabetes disproportionally affects African Americans and reveals how this diagnosis can transform families,
Serving as national Alert Day supporter, helping to increase awareness about the prevalence of diabetes and encouraging people to take the Type 2 Diabetes Risk Test. PHS also supports additional educational outreach efforts, particularly in the Diabetes Belt (states in the Southeastern United States with the highest prevalence of diabetes).
Our CEO, Tracey Brown, recently traveled to New Orleans, LA to attend the Prince Hall Shriners Diabetes Walk, where she received a check on behalf of the ADA for $75,000. This moment was especially monumental because the PHS National Diabetes Initiative officially achieved their goal of raising more than $1 million for the ADA toward the fight against diabetes. On hand to present the check to Tracey were Imperial Potentate, Carl Parker, and Dr. Otis Kirksey, head of the Prince Hall Shriners’ National Diabetes Initiative. Afterwards, Tracey joined the Prince Hall Shriners in their walk before enjoying some music by the Hot 8 Brass Band.
In the coming weeks, the ADA and PHS will connect to share ideas and establish new goals for the next phase of partnership in the fight against diabetes.
To learn more about the Prince Hall Shriners, visit aeaonms.org.
Letter from Karen Talmadge, PhD, 2018 Chair, American Diabetes Association Board of Directors:
The American Diabetes Association’s Pathway to Stop Diabetes® research program is celebrating its fifth year of attracting a new generation of brilliant scientists into the field of diabetes research. I am pleased to recall the concepts behind its creation, report on its progress and envision its future.
In 2009, the Chair of the ADA’s Research Foundation (RF) Board, Ralph Yates, DO, challenged the rest of the RF Board to identify the biggest problems in diabetes research and develop a campaign around them. Of course, we all want “the cure”—but this may be more of an aspiration than a strategy, since both type 1 and type 2 disease are complex and heterogeneous, and, so far, resistant to solutions.
We concluded that the true crisis in diabetes is that the current U.S. funding system drives clinicians away from diabetes research, drives researchers to choose better funded diseases and favors incremental change over innovation and transformation.
The NIH is the largest and most important source of medical research funding in the United States. For decades, the NIH budget for diabetes research has been woefully inadequate compared to the magnitude of the problem and compared to other disease states.[1] For example, in 2017, the NIH spent $5.9 B for cancer research and $3.0 B for AIDS research, but only $1.1 B for diabetes research.[2] Yet, in 2017, an estimated 30.3 M Americans had diabetes,[3] the numbers affected are spiraling up, the treatment of the disease and its complications consumed 20% of the all healthcare spending[4] and more people died from diabetes than breast cancer and AIDS combined. Despite this, the funding is channeled to other diseases, and, like everyone else, researchers follow the money.
Another challenge for investigators early in their careers is finding stable and adequate research funding from non-NIH sources; the average age for a first R01 grant is now 43 for PhD researchers and 45 for MD researchers.[1] This problem may be exacerbated in diabetes, where the level of funding is so chronically low.
The third obstacle is the drive for success over innovation. That is, with funding stretched thin, reviewers give better scores to research proposals where success seems more likely, favoring established diabetes researchers, mainstream thinking and incremental change. Also, the NIH restricts the use of funds to the current research plans, delaying or preventing the exploration of unexpected findings. This means that hypotheses that challenge conventional wisdom or researchers established in another field who want to apply their knowledge to diabetes are less likely to be funded.
The NIH has acknowledged some of these problems and developed newer funding mechanisms to address them, however, they are also under-funded and some just delay the problem. For example, first-time applicants are given scoring advantages that they lose when they apply for their first renewal. This creates another critical point at which scientists in diabetes research whose R01 grants do not get renewed can be lost—to a clinical career or to research in other disease states.
The Nobel Prizes provide a model for scientists who make transformational changes, and recipients can have surprising backgrounds. Many are young when they make their discoveries. For example, Frederick Banting (insulin), James Watson (DNA structure) and Albert Einstein (relativity) were 29, 25 and 26, respectively, when they first published the seminal work cited in their Nobel Prizes. And notable numbers of Nobel Prize winners changed fields: Fredrick Banting was an orthopedic surgeon. Walter Gilbert, trained as physicist, received the Prize for DNA sequencing. Rosalyn Yalow, creator of the radioimmunoassay for identifying and measuring protein concentrations, trained as a nuclear physicist.
The irony is obvious. Judging from Nobel Prizes, people are more likely to conduct transformational research early in their careers or when they are changing fields—and these are exactly the scientists most vulnerable to being rejected for funding by the NIH and other traditional sponsors.
The American Diabetes Association’s Pathway to Stop Diabetes program is designed to attract and retain brilliant researchers in diabetes research. Our vision is 100 new scientists doing diabetes research in the next decade.
Working with a Sub-Committee of the ADA’s Research Policy committee in 2010 and 2011, and with gratitude to Al Powers, MD, (Vanderbilt University), Chair of the Committee at that time, we developed specific award mechanisms and criteria:
Initiator Awards for post-docs who have never received an R01 grant;
Accelerator Awards for faculty early in their careers who may have a first R01 grant, but have not applied for or been awarded a second one; and
Visionary Awards for researchers established in other fields who want to bring their expertise to diabetes and have never received national grant support in diabetes.
Our focus is on the person, not on the experimental details of their research proposal. We help ensure brilliance and innovation by asking each institution to nominate one person to apply each year. There are no restrictions on the field of training or expertise, or around the problem in diabetes that interests them. The awards are substantial ($250,000 a year for five years), and they are portable (because the grants are to the individual, independent of their institution). The core requirements are that the Pathway Scientists conduct diabetes research, submit progress reports each year and attend the annual Scientific Sessions.
We also established a Mentor Advisory Group (MAG) with expertise in multiple areas of diabetes to select the awardees based on the strength of their mentor references and uniqueness of their ideas. The mentors are available throughout the duration of the award for scientific and career advice. We encourage collaboration with the mentors and with the other awardees. My immense gratitude to Ron Kahn, MD, (Joslin Diabetes Center) for organizing and chairing the MAG during its first three years, and to Silvia Corvera (U Mass) for chairing the committee now. We are also very grateful to the 2012 Founding Sponsors, Novo Nordisk, Sanofi and Eli Lilly, as well as major 2012 individual donors, including Don and Arleen Wagner and Pete and Linda Cummin. Since the inception of the program, we received early additional support from Astra Zeneca and Merck, and we just recently welcomed Dexcom as a sponsor.
We now have 29 Pathway Scientists in five classes, almost six per year, awarded from 2014-2018. Their research interests encompass all forms of the disease, and they work throughout the United States. They have made substantial progress from the Pathway research:
More than 80 publications;
Promotions and tenure;
Eight patent applications filed; and
Two companies spun off.
With the first class of Pathway Scientists in their fifth and final year of funding, we are developing new programs to keep the former Pathway Scientists engaged in diabetes research. We can also measure their commitment to diabetes research, for example, by following their careers. Notably, we can examine whether the Visionary Scientists, who are established scientists in other fields, continue to work in diabetes after our Pathway funding ends. For example, Wolfgang Peti, PhD, the first Visionary awardee, has said yes—and now has a substantial NIH grant to continue his Pathway research.
We expect to measure the ultimate success of Pathway in Nobel Prizes and in substantial improvements for people with diabetes. I will not promise a cure or cures—because diabetes is a particularly complex chronic disease, and we have not cured any other chronic diseases. But, I do believe that Pathway Scientists will make transformational scientific progress, translating into greatly improved outcomes and quality of life for people with diabetes.
To enhance and ensure future funding, I would like to thank ADA’s Will Cefalu, MD, Chief Scientific, Medical and Mission Officer, who is revitalizing and expanding the Research Foundation Board. Please let Will or me know if you want to get involved. We invite you to join us in ensuring the continued success of the Pathway program and awardees!
Karen Talmadge, PhD, is the 2018 Chair of the American Diabetes Association Board of Directors; Vice Chair of the American Diabetes Association Research Foundation Board; and Pathway co-creator, Mentor Advisor, and major donor. She has been a volunteer and leader for the ADA at the national level and in the Silicon Valley, California community since 1994.
Many people see the doctor every year for a physical. Most of us also schedule regular visits to the dentist to get our teeth cleaned. But what about your eyes? It’s important to take care of your eyes — just like you take care of the rest of our body!
That’s why we’re joining forces with the National Eye Institute (NEI), part of the National Institutes of Health, to celebrate Healthy Vision Month in May. This year, NEI is encouraging adults ages 25 to 35 to make vision a priority for years to come.
How does diabetes affect eye health?
Of course, we’re especially interested in helping people with diabetes learn how to protect their vision. Diabetes puts you at risk for diabetic eye disease, which includes diabetic retinopathy, cataracts, and glaucoma. Diabetic retinopathy, the most common kind of diabetic eye disease, is the leading cause of vision loss and blindness in adults ages 20 to 74.
Your risk for diabetic eye disease increases the longer you have diabetes. The good news is that getting regular eye exams and other healthy habits can help protect your vision.
What can you do to prevent diabetic eye disease?
Here are some simple steps that can help people with diabetes keep their eyes healthy.
Schedule that annual eye exam. It’s very important to find and treat diabetic eye disease early — before it causes vision loss. So make sure you get a comprehensive dilated eye exam at least once a year.
Eat eye-healthy foods. Choose foods that are high in fiber and low on the glycemic index. This will help keep your blood glucose steady, make you feel full, and keep your eyes healthy.
Get plenty of physical activity. Regular physical activity has lots of benefits — it can help control your blood glucose, boost your energy, and keep your heart healthy. Over time, it can also lower your A1C levels. If you’ve never been active before or it’s been a while, start slowly — try light activities like walking. It’s also a good idea to talk to your doctor before starting a new physical activity routine.
Quit smoking. If you smoke, make a plan to quit. Smoking lowers the amount of oxygen that gets to your organs, raises your bad cholesterol, and raises your blood pressure — all factors that can increase your risk of heart attack or stroke. Smoking can also make it more likely that you’ll develop eye problems that can lead to vision loss. If you need help quitting, talk with your doctor.
So, what’s your vision of the future?
Help us spread the word by telling us your vision of the future! Use #MyVisionMyFuture and the language below on social media throughout the month of May to share the steps you’re taking now to protect your vision in the future.
“I ___ now so I can see ___ in the future.” #MyVisionMyFuture
(NAPS)—Gestational diabetes is something to be concerned about after and not just during pregnancy. Gestational diabetes is diabetes that is found for the first time when a woman is pregnant. If you had gestational diabetes when you were pregnant, you and your child from that pregnancy have a lifelong risk for developing diabetes, a serious disease that can lead to health problems such as heart disease, blindness, kidney disease and amputations. The good news is there are steps you can take to prevent or delay type 2 diabetes and lower that risk for you and your child.
Get Tested for Diabetes Most of the time, gestational diabetes goes away after the baby is born. However, an estimated half of all women who had gestational diabetes will go on to develop type 2 diabetes later in life. If you had gestational diabetes, it is important to get tested for diabetes within 12 weeks after your baby is born, and at least every three years after that.
Talk to Your Doctor—and Your Child’s Doctor Talk with your doctor if you plan on becoming pregnant again because you have a higher chance of developing gestational diabetes again during future pregnancies.
It’s also important to know that any child you give birth to while having gestational diabetes is at risk for obesity and type 2 diabetes later in life. So, tell your child’s health care provider that you had gestational diabetes while you were pregnant. This is an important part of your child’s health history and can alert your health care provider to monitor growth charts more closely.
Other Steps to Take to Stay Healthy Here are some additional steps women with a history of gestational diabetes can take to prevent or delay type 2 diabetes, and to help their children stay healthy, too:
Try to reach your pre-pregnancy weight six to 12 months after your baby is born. Even if you do not reach your goal weight, maintaining a healthy lifestyle can help reduce the diabetes risk.
Make healthy food choices for you and your children. Choose foods that are lower in fat and calories and high in fiber. For example, choose lean meats, chicken and turkey with the skin removed and fish. Drink water instead of juice or sweetened soda.
Be more active each day. Try to get at least 30 minutes of activity, five days a week. It’s okay to be active for 10 minutes at a time, three times a day. Do this as a family!
Learn More For more information about gestational diabetes, visit the NIDDK website at www.niddk.nih.gov.
Keep up healthy habits—even after the baby is born
Thanks to the continued support of over 500,000 diabetes advocates like each of you, we continue to address the barriers faced by people with diabetes in their everyday life. Our fall newsletter outlines important highlights of activities from across the country. We recently celebrated a historic win that was achieved through a legal advocacy victory nearly 2 decades in the making. Because of the unwavering dedication of our Legal Advocacy team and volunteers, ADA successfully advocated against the U.S. Department of Transportation Federal Motor Carrier Safety Administration’s blanket ban against use of insulin that had been federal law since 1970! We achieved this critical change for people with diabetes due to your invaluable support—Thank You! As we enter American Diabetes Month next month, let’s end the year strong! Continue to raise your voice, share your story, and help us make a difference for the more than 30 million children and adults living with diabetes.
Federal Affairs The Federal Government Affairs team and our dedicated Diabetes Advocates have been busy promoting the need for increased funding for diabetes research and programs; advocating for access to affordable insulin; and defending the provisions of the Affordable Care Act (ACA) that benefit people with diabetes.
Federal Funding for Diabetes Research and Programs:
As Diabetes Advocates may be aware, earlier this year President Trump threatened to veto any omnibus legislation that crossed his desk. Taking this threat seriously, House and Senate appropriators advanced funding legislation for fiscal year (FY) 2019 more quickly than in recent history.
The House Labor, Health and Human Services, Education, and Related Agencies (LHHS) Appropriations Subcommittee considered and approved its FY 2019 bill on June 15. The full Senate approved legislation comprised of its FY 2019 LHHS funding bill and the House-passed Department of Defense (DoD) Appropriations Act (H.R. 6157) on August 23. Due to the often-contentious nature of LHHS funding, coupling defense and LHHS meant that the LHHS bill was more likely to be approved before the October 1 start of FY 2019. Senate Appropriations Chairman Richard Shelby (R-AL) and Ranking Member Patrick Leahy (D-VT) were adamant that they would not allow partisan policy riders in any FY 2019 appropriations legislation. The combined appropriations bill included $2,030,892,000 for National Institute of Diabetes and Digestive and Kidney Diseases ($59 million increase over FY 2018), $148,129,000 for DDT (level funding), and $25,300,000 for the National DPP (level funding).
On September 13, ADA joined 337 organizations at the Rally for Medical Research, a coordinated effort to call on Congress with one unified voice to increase funding for biomedical research at the National Institutes of Health (NIH). LaShawn McIver, MD, MPH, Vice President of Government Affairs, Advocacy, and Community Integrated Health, Allison McElvaine, PhD, Vice President, Research & Scientific Programs, and ADA’s federal team were joined by volunteer advocates Alvin C. Powers, MD, the Joe C. Davis Chair in Biomedical Science, and Professor of Medicine and Director of the Division of Diabetes, Endocrinology and Metabolism at Vanderbilt University School of Medicine ; and Stephanie Sisley, MD, Assistant Professor, Baylor College of Medicine, Children’s Nutrition Research Center, to make the case for increased research funding.
The text of the final FY 2019 LHHS Appropriations legislation was released that day, and rally participants celebrated a proposed increase of $2 billion in overall funding for NIH.
In the final bill, ADA’s priorities for the Centers for Disease Control and Prevention—the Division of Diabetes Translation and the National Diabetes Prevention Program—were funded at the same level as FY 2018, and NIH’s NIDDK received a $59 million increase. The House and Senate both approved the final conference legislation in September, clearing the way for the president to sign the bill, which included FY 2019 Department of Defense funding and a continuing resolution for unfunded agencies through December 7, on Friday, September 29, marking the first time in 22 years that LHHS priorities were funded in full prior to the start of a new fiscal year.
Diabetes Advocates should be proud of the effectiveness of their advocacy, which led to increased and stable funding for each of the key ADA priority programs in the new fiscal year. We encourage advocates to consider sending Congress a message of appreciation for their support and continued investment in critical diabetes research and programs. You can send your message via ADA’s Grassroots Action Center.
State Government Affairs
Entering the fourth quarter of 2018, the ADA team has initiated over 300 individual actions on prevention, health equity, and health care legislation and regulation in states across the country. These actions include meetings with legislators, briefings to legislative bodies, letters and alerts, and participation in lobby day activities. Without question, legislators and agencies from coast to coast are hearing the voices of our ADA advocates and staff. To date, we’ve achieved 52 state wins, and we expect to see resolution on many of the bills pending before the end of the year. This past month, several pieces of important ADA-supported legislation protecting health care for people with diabetes were approved in California, including legislation that prohibits Medi-Cal from decreasing benefit coverage due to work or community engagement requirements; prohibits short-term, limited duration health plans; and legislation that ensures consumers get charged the lowest possible price for their medications. In Vermont, the ADA was part of an effort to influence emergency regulations for Association Health Plans which resulted in the addition of several consumer protections that will benefit people with diabetes.
As reported throughout the year, ADA is also achieving significant wins in our other priority areas to secure new and maintain existing state budget allocations for prevention programs. We have also regularly engaged in legislation and regulation aimed at advancing prevention policy, increasing health equity, and protecting against discriminatory policies for students and drivers with diabetes.
Diabetes Advocates will have a busy and active end-of-year as we will be calling on advocates like you to help us close out pending legislation and regulation as the year comes to a close. For a complete list of state legislation, please feel free to contact Lisa Murdock, Vice President, State Government Affairs at lmurdock@diabetes.org.
LEGAL ADVOCACY Over the summer, we entered the busy back-to-school season for families of children with diabetes, and in early fall, we celebrated a regulatory victory that was more than two decades in the making. Needless to say, the Legal Advocacy team has been very busy!
Raising Our Voice In mid-September, following more than two decades of advocacy by the ADA, the U.S. Department of Transportation Federal Motor Carrier Safety Administration (FMCSA) published a Final Rule on diabetes. The new rule eliminates the blanket ban against use of insulin by commercial drivers that had been federal law since 1970. Although an exemption program has been available since 2003, once an individual began using insulin, it was a cumbersome and lengthy process to return to the road. It was common for people to avoid or delay going on insulin, to the detriment of their health, because the time required to receive an exemption meant six or more months without driving, often without income. The new rule is modern, fair, and flexible. It is based in individual assessment and recognizes the significant advances in diabetes science, medicine, and technology that today allow people with diabetes to effectively manage their diabetes in ways not possible when the old rule was written in the late 1960s. The final rule gives great deference to the expertise and judgement of the individual’s treating physician, and it references the authority of the ADA and our advocacy throughout the years. The new rule takes effect on November 19. We have posted a Frequently Asked Questions document to address the various questions for impacted individuals, and we are developing an education campaign to reach more people with information.
Supporting People with Diabetes Summer and early fall are our busiest times of the year as kids return to school and families seek the ADA’s help navigating the challenging process of managing diabetes at school. To support schools, we finished an update to our training modules, Diabetes Care Tasks at School: What Key Personnel Need to Know. These and other training materials are available at diabetes.org/schooltraining. To help guide and support parents and families of children with diabetes, we recorded a Safe at School back to school webinar with Crystal Woodward, Director, Safe at School. This webinar is available on demand.
To better understand how our legal services influence constituents and to inform potential programmatic enhancements, we conducted a survey of people who contacted the ADA and were helped by our Legal Advocate Program from June 2017-May 2018, about education, childcare, and camp related discrimination issues. The survey’s findings will help us refine our program and how we communicate about the impact of our services for people with diabetes. Key takeaways from the survey include:
From 2017–2018, constituents with a diabetes-related discrimination issue in an education, childcare, or camp setting increased their confidence to advocate for their rights by 63% after leveraging ADA Legal Advocacy support and resources.
These constituents increased their knowledge of the Americans with Disabilities Act by 65% and of Section 504 of the Rehabilitation Act by 60% after working with the ADA Legal Advocacy team.
Nearly two-thirds reported a positive result of their advocacy efforts, such as an increase in nurse coverage at school or in the number of staff trained on diabetes care after working with the ADA Legal Advocacy team.
We continue to share stories about the people we are helping and the impact of our work to both promote the importance and effectiveness of ADA Legal Advocacy and to raise awareness about available services and support. Along these lines, a man whose type 2 diabetes never interfered with his job until he began experiencing foot pain needed extra leave from work in order to receive treatment. His employer refused additional medical leave or to discuss reasonable accommodations that would allow him to return to work. Out of work for months, without any pay or disability benefits, James contacted the ADA for help. With guidance and support from an ADA Legal Advocacy attorney, James successfully advocated for himself. Read his full story on the Diabetes Stops Here blog.
Grassroots Advocacy Diabetes Advocates, once again, demonstrated their passion, commitment, and effectiveness over the summer and early fall. Whether responding swiftly to action alerts, helping to grow the Advocate Network, or by participating in meetings with congressional members and staff at home, Diabetes Advocates continued to raise the bar and set a national example of the power of advocacy.
Taking Action Advocates have been busy, responding to 15 calls to action—on state-based and federal issues, as well as Legal Advocacy—all of which were deployed since July alone. Diabetes Advocates raised their voice time and again to ensure the ADA’s message about the critical need to support people with diabetes is received by the nation’s decision makers. Issues we confronted ranged from insulin affordability to supporting federal diabetes research, to health insurance, to providing diabetes self-management training to Medicare beneficiaries, and more. Beyond calls to action, we were pleased to be able to invite state-based advocates to an ADA Advocacy training in the field. In addition, our Congress at Home campaign in August achieved outstanding results and engagement with members of Congress to discuss policies and legislation impacting people with diabetes. This year, the Grassroots Advocacy team piloted broader outreach to Diabetes Advocates and asked them to meet with members of Congress to ensure that people with diabetes are represented and understood on Capitol Hill. This new tactic brought a new highly engaged constituents into the ADA Advocacy fold, and given the success, we are looking to expand outreach in the future.
Empowering Advocates – Grassroots Webinars As a new element of this year’s Advocates in Action activities, the Grassroots Advocacy team hosted a well-attended webinar focused on how to educate candidates for public office, and the legal boundaries and requirements associated with this type of advocacy. Specifically, the webinar informed Advocates about the importance of candidate education and the value of the relationships that can be forged with those seeking office at the onset. In addition, the webinar provided training and guidance on the legal parameters for outreach and advocacy to candidates running for office and in general. Both traditional advocacy, like in person meetings, and non-traditional advocacy engagement, such as social media, require clear understanding of legal requirements and boundaries to ensure Advocates remain in step with the law.
During the webinar, Diabetes Advocates were encouraged to seek meetings with ALL candidates for public office ahead of the November election to provide basic education on the impact and reality of diabetes, key priorities, and opportunities for public policy intervention, and to offer themselves and the ADA as a resource to the candidate if they have questions or need more information.
A comprehensive set of supporting resources were provided to advocates during the webinar, and as follow-up, including template invitation for meetings with candidates; step-by-step guide to candidate education; and legal guidance sheet for ADA advocacy and lobbying. These resources, as well as the webinar’s audio recording and accompanying slides, can be accessed on the ADA website.
Congress at Home – Recap By all accounts, the ADA’s 2018 Congress at Home initiative was an excellent success as Diabetes Advocates hosted nearly 60 meetings with Congressional members and their staff across the country. Perhaps more impressive and invaluable to this year’s effort, upward of 80% of the meetings held were with key congressional member offices – specifically those with direct influence and jurisdiction over ADA federal policy priorities and asks. We are also pleased to share that as a result of this year’s Congress at Home activities, a number of new Diabetes Advocates became engaged with ADA advocacy in a new and more advanced manner.
This year’s Congress at Home meetings are already bearing fruit as the ADA team has already begun direct follow-up with congressional offices to build on conversations Diabetes Advocates began during at-home meetings. Once again, Diabetes Advocates proved their dedication and passion, surpassing this year’s goal to host 50 meetings, and, in a more overarching way, to continue vital conversations about policy priorities as follow up to a successful Call to Congress in the spring.
Insulin Affordability We are pleased to share that the insulin affordability petition has been signed by over 400,000 people, including the addition of more than 123,000 signatures in the first three quarters of 2018 alone. Garnering 400,000 signatures is both a critical milestone and a symbol of the salience this issue has for the diabetes community. The ADA is currently developing an ongoing engagement strategy specific to insulin affordability to continue to mobilize advocate interest and passion. As always, the advocacy strategy will continue its foundational approach to further inform policymakers and the public at-large about the staggering impact of this issue and critical need for swift resolution. In September, we launched an animated graphics video to help explain the complexities of the insulin supply chain, and urging viewers to join us in taking action by signing the insulin affordability petition and asking their friends, family and colleagues to do the same.
Call to Congress 2019 We are thrilled to share our 2019 Call to Congress convening in Washington, DC, has been set for March 27 – 29, 2019. A save-the-date for the ADA’s premier advocacy event was sent to the full advocate network in mid-September, complimented by a second save-the-date message sent specifically to an expanded group of diabetes researchers across the country.
In addition to this year’s in-person convening, we have expanded the scope of the Call to Congress campaign to span a nine-month timeline with specific Call to Congress communications, training, and engagement opportunities for the advocate network at-large. Advocates across the nation will be given a day-by-day action plan that will coincide with the in-person convening in Washington. Whether by social media posts, emails and phone calls to Congress, or sharing their story, every one of the ADA’s 500,000-plus Diabetes Advocates will have an opportunity in 2019 to raise their voice on behalf of those impacted by diabetes. Please save the date and get excited about the role you can play in this year’s Call to Congress campaign!
What’s Around the Corner? As a part of this November’s American Diabetes Month (ADM) initiative, we will be asking Diabetes Advocates to submit local media pieces to their local newspapers addressing newly elected officials who can support people with diabetes. In the form of opinion editorials (OpEds), these local media pieces will congratulate newly elected officials, welcome the opportunity to work with them in their new role, and highlight ADM and key diabetes stats and priorities – localized whenever possible. While this effort will begin immediately following the November elections, we will encourage submission of local advocacy stories to the media through the remainder of 2018. Slight modifications to templates will be provided in December to adjust for post-ADM messaging. The Grassroots Advocacy team will provide training, technical assistance, and supporting resources, including template press materials and step by step directions for submission, to ensure Diabetes Advocates have the resources and support to be successful.
A refreshed Advocates in Action calendar for 2019 is coming very soon! The 2019 calendar will outline multiple options for ongoing advocacy engagement each month. Redesigned to engage the wider network of Diabetes Advocates, the Advocates in Action calendar will provide the advocacy road map for 2019, laying out easy steps for engagement, accessing training and resources, and anchor initiatives and campaigns that serve as the foundation to our advocacy strategy and tactics. Stay tuned for more information coming soon!
Advocacy is one of the core components needed to fulfill our mission – to prevent and cure diabetes, and to improve the lives of all people affected by the disease. Time and again, Diabetes Advocates have heeded the call to act, with commitment and passion, to deliver an unmistakable message – that we as a nation and a people, must do better to support those impacted by diabetes. There is nothing more powerful than the voices and stories of our advocates – we are grateful for the incredible passion and commitment of Diabetes Advocates, like you, who represent the heart of the ADA’s work.
Public Policy
Prevention: Freeing people from diabetes and all its burdens demands a wholistic approach. Lifestyle management is a fundamental aspect of diabetes care. And we know that improved nutrition and increased physical activity can play key roles in preventing type 2 diabetes and delaying or preventing serious complications. So, as the work to protect and strengthen the Affordable Care Act (ACA), Medicare and Medicaid continues, the ADA has also been advocating for strong, effective prevention policies and regulations at the federal level. Even in an otherwise challenging environment, the ADA’s efforts are resulting in positive changes.
Menu Labeling: May 7, 2018 marked the date that new federal nutritional labeling requirements for restaurant menus went into effect. Authorized by a provision in the ACA, this policy change has been a long-sought goal for ADA and will help all consumers make informed, healthier choices. To make sure the information provided is most useful to people with diabetes and prediabetes, ADA has worked to ensure federal regulators adopt accurate, readable labeling for salad bar foods and vending machine products.
Nutrition Facts Labels: New, improved Nutrition Facts Label requirements for most packaged or canned food products, like those purchased at the grocery store, are now set for implementation on January 1, 2020. This, too, is the product of years of advocacy from the ADA and our coalition partners. In recent months, ADA has pressed federal regulators to ensure they get the details right, weighing in on what counts as dietary fiber, and how to label honey and maple syrup products. On September 26, the ADA Public Policy staff met with leadership of the FDA’s Center for Food Safety and Applied Nutrition, along with several key coalition partners, in a productive conversation to explore these issues.
Dietary Guidelines: At the U.S. Department of Agriculture (USDA), the process is now underway for the 2020 revisions of the Dietary Guidelines for Americans. Released every five years, these guidelines are the federal government’s nutritional advice to the public and shape nutrition policy across the federal government. Consistent with past years, a federal Advisory Committee will be established to review the scientific evidence and inform the development of the updated Dietary Guidelines. In a March 30 comment letter to the USDA, the ADA explained how the Dietary Guidelines Advisory Committee could better consider the link between nutrition and type 2 diabetes risk. And in a September 6 announcement, we learned that our recommendations to review the link between added sugars and diabetes at multiple stages of the lifespan and during pregnancy, were squarely on the Advisory Committee’s detailed agenda.
We are pleased with the progress we’ve made to help people with diabetes and those at risk, so they can make informed food choices. We will keep engaging with regulators wherever we can to keep the momentum going!
During her first pregnancy in 1994, Sophia Boulanger developed gestational diabetes and was later diagnosed with type 2 diabetes. Then in 2011, Boulanger was told she had 90 percent blockages in all five vessels supplying blood to the heart.
The quintuple bypass surgery that followed was “the scariest moment of my life,” she recalled.
Despite a family history of diabetes, Boulanger wasn’t aware of the added health risks and challenges that could arise, such as heart disease and stroke.
“It is so important to listen to your body,” said the 55-year-old from Memphis, Tennessee. “I was experiencing general symptoms of fatigue, thirst and shortness of breath, but I didn’t take immediate action to address those signs with my doctor. My hope is for others to hear my story and learn from it.”
Today, Boulanger works closely with her endocrinologist and cardiologist to stay healthy. She has also partnered with the American Diabetes Association and American Heart Association to share her story as part of a new initiative launching Friday that aims to help people with type 2 diabetes reduce their risk of disability and death from heart attacks, strokes and other cardiovascular problems.
More than 30 million Americans have diabetes, including about 7.2 million who don’t know they have it, according to statistics from the ADA and AHA. Moreover, another 84.1 million U.S. adults have prediabetes. Adults with diabetes are two to four times more likely to have heart disease than people without diabetes.
“Diabetes is a significant threat to the cardiovascular health of many Americans,” AHA chief executive officer Nancy Brown said in a news release. “As we work toward our goal to improve Americans’ health, this collaboration aims to unite the health care community with a comprehensive approach to caring for, educating, treating and empowering patients with diabetes to improve their cardiovascular health and their quality of life.”
The two nonprofits say the collaboration is designed to educate the public about the critical link between diabetes and cardiovascular disease, and to educate patients, train health care providers and support quality improvement measures for clinics and hospitals treating people with diabetes.
“Unfortunately, a common theme I find among my patients with diabetes is an overall lack of awareness for the connection between diabetes and cardiovascular disease,” said endocrinologist Dr. Robert Eckel, a member of the ADA board of directors and a past AHA president.
Diabetes increases a person’s risk for many serious health problems, posing further challenges for managing diabetes.
“The added risk of heart disease needs to be communicated and then actively prevented or treated,” Eckel said.
The initiative is being supported by founding sponsors Boehringer Ingelheim, Eli Lilly and Company and Novo Nordisk, with Sanofi providing additional support as a national sponsor.
Government Affairs & Advocacy Newsletter Update: July 2018
BY JULY 23, 2018 – 7:45 PM HEALTH
By American Diabetes Association
Introduction from LaShawn McIver, MD, MPH
Dear Advocates,
What a busy year 2018 has been so far! In this summer’s Advocacy Newsletter, I’m excited to share updates from our teams in Federal Government Affairs, State Government Affairs, Legal Advocacy, Grassroots Advocacy and Public Policy. Together, these hardworking teams have made so much progress on the federal, state, and local level to intensify the urgency around the diabetes epidemic and ensure access to affordable and adequate health care for all people with diabetes. From securing renewed funding of the Special Diabetes Program, to ensuring states continue to offer health plans within the Affordable Care Act’s consumer protection rules, to answering questions about a person’s legal rights, the ADA has been working harder than ever to make our voices heard.
But they can’t do it alone—I would like to take this opportunity to say thank you to the dedicated Diabetes Advocates who stand alongside us every step of the way to support our mission. Together, we can transform the lives of all people with diabetes. I look forward to seeing what the rest of the year will bring!
From the Senior Vice President’s Corner LaShawn McIver, MD, MPH Government Affairs, Advocacy & Community Integrated Health
Federal Government Affairs
The federal government affairs team and our dedicated Diabetes Advocates have been busy promoting the need for increased funding for diabetes research and programs, advocating for access to affordable insulin, and defending the provisions of the Affordable Care Act (ACA) that benefit people with diabetes.
Insulin Affordability
A major highlight of the past several months was the testimony of William T. Cefalu, MD, the ADA’s Chief Scientific, Medical and Mission Officer, before the U.S. Senate Special Committee on Aging to call for increased transparency in the insulin supply chain and affordable insulin for all who need it, and to discuss the Insulin Access and Affordability Working Group: Conclusions and Recommendations white paper and the ADA Public Policy Statement: Insulin Access and Affordability. To keep apprised of ADA’s work on this critical issue, please visit makeinsulinaffordable.org, where more than 355,000 advocates have signed our petition calling for increased affordability.
Affordable Care Act
On June 14, the ADA signed on to an amicus (friend of the court) brief defending the ACA against a lawsuit challenging the constitutionality of the law. An amicus brief is filed by an individual or entity that has an interest in a court case, and the brief shares expertise or information pertaining to the case that will assist the court in making its decision. Back in February, 20 states led by the Attorney General of Texas filed a lawsuit against the federal government challenging the ACA in federal court. The lawsuit argues that because of the repeal of the ACA’s individual mandate tax penalty, the entire law is no longer valid. In 2012, the Supreme Court upheld the ACA saying that the law was valid because Congress has the authority under the Constitution to levy taxes.
The ADA then joined with the American Cancer Society Cancer Action Network, the American Heart Association, the American Lung Association, and the National Multiple Sclerosis Society in filing the brief. The brief does not make the ADA a legal party in the case; however, it does bring to the court’s attention the ADA’s significant interest in protecting the ACA. The brief includes research on how people with diabetes would be impacted if the ACA, including the law’s important consumer protections, would be ruled unconstitutional. The brief urged the court to uphold the ACA and recognize Congress’ intent to improve access to health care for millions of Americans, including people impacted by diabetes.
Federal Funding for Diabetes Research and Programs
House and Senate appropriators have advanced funding legislation for fiscal year (FY) 2019 more quickly than they have moved funding bills in recent history. The House Labor, Health and Human Services, Education, and Related Agencies (LHHS) Appropriations Subcommittee considered and approved its FY 2019 bill on June 15, and diabetes research and programs received necessary increases. In the House bill, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is funded at $1,994,333,000 (a $23.536 million increase over FY 2018), the Division of Diabetes Translation (DDT) is funded at $155,129,000 (a $7 million increase over FY 2018), and the National Diabetes Prevention Program (National DPP) is funded at $26,800,000 (a $1.5 million increase over FY 2018). The full House Appropriations Committee began its markup on July 11. The Senate is also working on its LHHS funding bill; the LHHS Subcommittee approved the legislation on June 26 and the full committee approved the legislation on June 28. Funding for diabetes programs in the Senate bill is $2,030,892,000 for NIDDK (a $60.095 million increase over FY 2018), $148,129,000 for DDT (level funding), and $25,300,000 for the National DPP (level funding). We will continue to advocate for the maximum possible increases for these important programs and are committed to our requests of $2.165 billion for NIDDK, $185 million for DDT, and $29 million for the National DPP.
State Government Affairs
As we head into the second half of 2018, let’s take a minute to reflect on the state-level government affairs and advocacy work the ADA has been engaging in, and consider how that work benefits the millions of Americans with diabetes and prediabetes across the country. We’ve achieved dozens of wins in our health care priority area by defeating proposals that lessen the quality of health care for people with diabetes and prediabetes including legislation that would have:
Repealed hard-fought diabetes insurance mandates
Allowed the sale of lesser quality health insurance across state lines
Allowed pre-existing condition exclusions
Allowed the sale of substandard plans that aren’t adequate for people with diabetes
We’ve also worked to increase access and improve affordability of medication and services by supporting legislation that:
Prohibits cost-sharing for preventive services
Prohibits agreements that prevent pharmacies from charging patients the lowest price for their prescriptions due to clawback agreements
Limits out-of-pocket costs for medication
Sets evidence-based protocols that reduce obstacles to getting the medications prescribed for them
In addition to these important wins, the ADA has worked in states across the country to protect health care for our most vulnerable population: People who are receiving their benefits through a state Medicaid program. We’ve defeated legislation and regulation that would impose work and community engagement requirements in state Medicaid programs because we believe these requirements could create a barrier for people with diabetes to access health care. We have also worked in collaboration with other organizations to expand Medicaid eligibility in states and improve Medicaid programs for people with diabetes and prediabetes by adding coverage for diabetes self-management education (DSME), continuous glucose monitors (CGM), and by increasing access to the National Diabetes Prevention Program (NDPP). As a result of our collective advocacy efforts, state policymakers were able to understand that by adding these benefits their state’s financial resources can be utilized in the best way—by preventing and delaying diabetes for those with prediabetes, and by offering better management tools for those with diagnosed diabetes.
Our work hasn’t been limited to health care; we’ve also achieved significant wins in our other priority areas, including securing new and maintaining existing state budget allocations for diabetes prevention programs, securing budget allocations and passing legislation aimed at increasing access to healthy foods in communities with food deserts, and requiring free and reduced-price meals for students in high-poverty school districts. ADA staff and advocates are also engaging in legislation aimed at making the healthy choice the easy choice by supporting local and state-level legislation that requires bundled kids’ meals to have a healthy beverage and working to improve standards for physical activity and physical education in schools. What’s more, the ADA sponsored legislation in Arizona and Indiana that requires those states to prepare diabetes action plans to assess the burden of diabetes in their states and develop policy recommendations that state legislators can implement to reduce that burden. Over time, the ADA has worked to help pass this state coordination on diabetes legislation in more than 30 states, and we’re happy to add these two new states to that list.
Finally, the ADA recently celebrated a victory in New York, where we worked with other organizations to defeat legislation that would have required mandatory clinician-reporting and self-reporting of conditions that might cause lapse of consciousness or unawareness to the Department of Motor Vehicles. The ADA opposes discriminatory blanket policies like this that mandate reporting.
Our efforts are far from over as ADA staff and advocates continue to work on legislation and regulation in states with active legislative sessions. We’re counting on everyone’s help to get these final bills and proposals across the finish line. For a complete list of state legislation, please feel free to contact Lisa Murdock, Vice President, State Government Affairs at lmurdock@diabetes.org.
Legal Advocacy
The first half of 2018 was a busy one with litigation activity, Safe at School training and education, and hundreds of people with diabetes receiving help from the ADA on discrimination matters.
Raising Our Voice
At the end of 2017, the federal court in the northern district of California who heard our lawsuit against the U.S. Army Child, Youth & School Services granted the Army’s motion to dismiss our lawsuit. After assessing the court’s decision and considering our options, we appealed the decision to the U.S. Court of Appeals for the Ninth Circuit. In late June, we filed our opening brief and received the support of 32 organizations that signed onto three amicus (friend of the court) briefs. These organizations included AARP, AARP Foundation, ACLU, American Association of Diabetes Educators, Animal Legal Defense Fund, Autistic Self-Advocacy Center, Bay Area Legal Aid, Child Care Law Center, Children with Diabetes, Civil Rights Education and Enforcement Center, Council of Parent Advocates and Attorneys, Disability Rights Education & Defense Fund, Endocrine Society, Epilepsy Foundation of America, Impact Fund, International Society for Pediatric and Adolescent Diabetes, Judge David L. Bazelon Center for Mental Health Law, Law Foundation of Silicon Valley, Legal Aid Association of California, Legal Aid at Work, Legal Aid Foundation of Los Angeles, Legal Services for Prisoners with Children, National Association for the Deaf, National Disability Rights Network, National Federation of the Blind, National Women’s Law Center, Pediatric Endocrine Society, Public Interest Law Project, Southern Poverty Law Center, T1D Exchange, The Arc of the United States, and Worksafe, Inc.
In early March, we filed a motion in federal court in Tennessee requesting permission to join a lawsuit filed by a group of incarcerated individuals with diabetes against the nation’s second largest private prison operator, CoreCivic. The suit alleges severely inadequate diabetes care to individuals with insulin-treated diabetes at the Trousdale Turner Correctional Facility. We are still awaiting a decision from the court on our motion to intervene.
In June, we joined the American Cancer Society, American Cancer Society-Cancer Action Network, American Heart Association, American Lung Association and National Multiple Sclerosis Society in filing an amicus brief in Texas v. U.S., a lawsuit brought by 20 Republican attorneys general in federal court in Texas challenging the constitutionality of the Affordable Care Act.
Supporting People with Diabetes
Demand continues to be high for legal advocate assistance, demonstrating the critical need in the diabetes community for quality, free legal assistance and information. During the first half of 2018, we handled 902 new requests for legal assistance from people facing discrimination. The Legal Advocate Program provides counseling, guidance, and resources to individuals facing discrimination at school, daycare, work, when interacting with law enforcement or in correctional facilities, and in public places.
We continue to learn about the positive impact of our work—recently, a family in Washington who was having difficulty registering their daughter for their zoned public school contacted us for help. The daughter has type 1 diabetes and the school did not have trained staff to provide care. Instead, the school was requiring the child to attend a different school with a full-time nurse. The family contacted the ADA for assistance and received a full legal consultation and advice about their daughter’s rights from one of our attorneys. Equipped with this guidance, the family successfully advocated for their daughter to attend her desired school. Recently, the family shared their experience, in their own words, here on our Diabetes Stops Here blog.
Educating families, advocates, health care professionals, and others about the legal rights of children with diabetes continues to be a hallmark of our Safe at School campaign. Crystal Jackson, Director, Safe at School, and Fran Cogen, MD, Interim Co-Chair and Director of Endocrinology and Diabetes at Children’s National Medical Center and member of the Safe at School Working Group, co-presented a Safe at School pre-conference workshop at the ADA PostGraduate Course in San Francisco in February. A free continuing education program, the workshop focused on the legal protections of students with diabetes, resources, and case studies to help providers to advocate better on behalf of their pediatric patients. In addition to this workshop, Crystal and Fran teamed up for a two-part conversation about the Safe at School campaign, diabetes management in schools, and how to make it all work. You can read the conversation here (part 1) and here (part 2). In July, Crystal presented several sessions on Safe at School as a member of the faculty at the Children with Diabetes Friends for Life conference.
Grassroots & Internal Advocacy
Whether by responding to our action alerts, signing petitions, attending Call to Congress, joining advocacy webinar trainings, or signing up for Congress at Home, Diabetes Advocates lead with passion, commitment, and dedication in their efforts to stand up for those living with or impacted by diabetes.
Taking Action
The spring and summer have proven to be a busy time for both calls to action and overall advocate engagement, with nearly 20 calls to action—split evenly across both state-based and federal issues—deployed since April alone. Diabetes Advocates raised their voice time and again to ensure our message about the critical need to support people with diabetes is received by the nation’s lawmakers. While alerts have asked advocates to engage lawmakers using traditional methods, like email, we recently began integrating social media messaging and engagement options into calls to action. This method is empowering advocates to use different platforms to communicate with their elected officials and is making it easier for advocates to take action. We are also pleased that this approach will help to expand the reach and visibility of diabetes advocacy across social media platforms more generally, equating to greater public awareness of the impact of diabetes and the opportunities to engage directly in diabetes advocacy.
Our Advocates in Action activities for the second quarter of 2018 included three webinars, all of which are now available online. Our April Advocates in Action webinar, Partnering for Health Equity: Diabetes Advocacy, aligned with the Health and Human Services Office of Minority Health’s 2018 April Minority Health month theme, Partnering for Equity. Participants learned from key staff and coalition partners about how the ADA works with partners to address barriers to health equity at all levels, including: The Special Diabetes Program for Indians, case studies from recent state legislative efforts, the Screen at 23 Campaign for Asian Americans, and an organizational update about the work of the Community Integrated Health Strategy Team.
In June, we hosted two broadcasts of a webinar developed for parents of children with diabetes, Kids with Diabetes: How ADA Helps. Parents heard first-hand from a pediatric psychologist, other parents, and from a teen living with diabetes about how the ADA makes a difference for kids with diabetes, including: supporting for federal funding of research, ADA’s Standards of Care, resources for newly diagnosed families, ADA Camps, advocates for affordable health care access, insulin affordability, and more.
June also marked the beginning of our Congress at Home campaign, the ADA’s initiative to ensure that senators and representatives hear from advocates during the August congressional recess. Interested Diabetes Advocates can now easily sign up to access resources on our new webpage. We kicked off the annual campaign with the broadcast of the first in a two-part series webinar, Take Advantage of Your Opportunity to Raise Voice at Home! Participants learned about our asks for the 2018 Congress at Home visits, and about ADA resources and support to help them secure meetings. The second webinar, Congress at Home Prep Webinar 2: Priority Messaging, Policy Asks & the Very Latest from Capitol Hill, was held July 24, and will be viewable online (on the page featuring 2018 webinars) by July 30.
Insulin Affordability
We are pleased to share that the insulin affordability petition has garnered more than 355,000 advocate signatures, including the addition of more than 45,000 signatures in the first half of 2018 alone. Surpassing 350,000 signatures is both a massive benchmark and a symbol of what has proven to be one of, if not THE, most compelling advocate recruitment and engagement strategies to date. ADA staff is currently in the process of developing an ongoing engagement strategy specific to insulin affordability to mobilize advocate interest and passion. As always, the advocacy strategy will continue its foundational approach to further inform policymakers and the public at large about the staggering impact of this issue and critical need for resolution.
Congress at Home
Work on Congress at Home began in early June when Diabetes Advocates across the nation were invited to join the ADA in our annual initiative to meet with members of Congress while home during the August recess. As always, all advocates were welcomed to participate in Congress at Home and can do so by signing up and issuing personal invitations to their congressional members for a meeting in the community while on recess. In addition to the broad call for engagement, this year we launched several new strategies to maximize our success. One such strategy was the issuing of the first ever ADA Congress at Home invitation sent directly to key members of Congress encouraging them to join Diabetes Advocates for a meeting in their community as a part of Congress at Home. While not every member of Congress received an ADA invitation, those who did were chosen based on committee assignment, expressed interest in ADA priorities during the 2018 Call to Congress meeting, and other reinforcing factors enabling support for advocate goals. The ADA invitation was sent to reinforce invitations sent by Diabetes Advocates and to create a tool for follow-up and support by ADA staff. Of the more than 50 ADA-issued invitations, dozens of congressional offices responded with interest in scheduling a meeting with Diabetes Advocates. Early indications suggest these new strategies will yield positive results for this year’s initiative.
As the August recess nears, we are encouraged by the interest and engagement in Congress at Home on the part of both congressional members as well as Diabetes Advocates. Every year we look forward to Congress at Home as an opportunity for advocates to cultivate deeper relationships and discuss ways in which lawmakers can be more supportive.
What’s Around the Corner?
We are excited to continue engaging Diabetes Advocates with multiple webinars and new initiatives slotted for this fall. In particular, we are looking forward to launching coordinated advocacy efforts geared at candidate education. This initiative will help advocates to establish solid foundational knowledge about the impact of diabetes and cultivate trusted relationships with new policymakers at the onset of a new term in office. To support advocates in this effort, we will be hosting a webinar on Wednesday, September 12 at 4:00 p.m. ET to train Diabetes Advocates on how to effectively and appropriately engage candidates for public office to educate them about the impact of diabetes and the critical need for their support during and after their bid for office. Specifically, the webinar will cover the legal guidelines around candidate outreach and education, the value of relationships with an ultimate goal of cultivating champions, opportunities for meetings and outreach, and what happens after the election. Be sure to save the date and join us for this important discussion.
“Raise Voice” is one of the ADA’s three strategic mission pillars, and our grassroots advocacy efforts—including recruiting, empowering, and mobilizing advocates—are critical to our success. Thus far, 2018 has brought nonstop challenges and opportunities at both the state and federal level. What has carried us through and what will always move us closer to achieving our mission is compelling and timely grassroots advocacy engagement. There is nothing more powerful than the voices and stories of our advocates—we are grateful for the incredible passion and commitment of advocates like you!
Public Policy
Medicare
Although we continue to see elements of the Affordable Care Act being chipped away and discarded, recently we have found some positive trends in Medicare. On the regulatory front we continue to work with stakeholders to help ensure Medicare recipients with diabetes have access to the technology and services they need.
Medical technology is constantly changing and advancing to allow patients to receive the best possible care. However, technology is often far ahead of the regulatory process. We have seen this specifically in the advancement of Continuous Glucose Monitors (CGM). Although the Centers for Medicare & Medicaid Services (CMS) approved therapeutic CGM devices for Medicare coverage in January of 2017, if the CGM was used in conjunction with a smart device, such a as a smartphone, smart watch, or tablet, Medicare would not cover it. For many individuals with diabetes who are blind or have low-vision, the accompanying app in a smart device enables them to use CGM. For others, pairing CGM with a smart device allows individuals with diabetes to share glucose data with caregivers and family. The Medicare policy that excluded coverage for CGM if used in conjunction with a smart device created an unnecessary barrier for Medicare beneficiaries to access and continue to use CGM in the way they—and their health care provider—determined to be appropriate.
In June, we were pleased to see that CMS listened to our feedback and feedback from other stakeholders and modified the coverage policy to include the use of CGMs in conjunction with a smart device. This is a huge win for Medicare recipients with diabetes, as well as for the future of emerging technologies for the diabetes community.
Also under the Medicare umbrella, Diabetes Self-Management Training (DSMT) has come to the forefront in both the legislative and regulatory arenas. Although DSMT has demonstrated significant benefits for individuals with diabetes—improved diabetes knowledge, improved self-care behaviors, lower A1C, lower weight, improved quality of life, healthy coping, and lower costs—only 5% of Medicare beneficiaries with newly diagnosed diabetes use DSMT services. After months of working closely with the ADA and other diabetes stakeholder organizations, this May, Representative Reed introduced a bill in the House of Representatives titled “Expanding Access to Diabetes Self-Management Training Act of 2018” (HR 5768). The bill would increase the number of DSMT hours covered by Medicare, remove cost-sharing, allow DSMT services be fulfilled in a non-hospital setting, and remove additional restrictions relating to coverage.
On the regulatory front, we are working closely with the Department of Health and Human Services (HHS) to identify and address barriers to the uptake of DSMT in rural populations. Our priorities include, but are not limited to, the reduction or removal of cost-sharing, implementing coverage for a virtual program, and expanding access beyond the outpatient hospital setting. It is our hope that by addressing these issues in multiple forums, the barriers to DSMT will crumble and more Medicare beneficiaries will have access to the care they need.
