Originally published in August 2016
When it comes to people who’ve earned the designation of Amazing Advocate in our ongoing series here at the ‘Mine, Paul Madden is a natural fit. Without a doubt, he’s one of the most influential diabetes advocates of our time, who’s become an inspiration to kids, adults, and families aross the world.
Aside from his incredibly long list of professional and personal accomplishments over the past four decades, Paul is a longtime type 1 himself, diagnosed as a child.
You name it, Paul’s done it. He’s held leadership roles in the Children With Diabetes, American Association of Diabetes Educators (AADE), and currently he’s vice president of the Diabetes Education and Camping Association (DECA), to name a few.
Professionally, this D-peep worked for 30 years at the famous Joslin Diabetes Center in Boston, rising up the ranks to director of advocacy and eventually becoming special assistant to the president. He also worked for a number of years for Johnson & Johnson and even did a stint with PepsiCo, all while still wearing his D-advocacy hat.
Most recently in June, Paul put on another noteworthy hat that’s big news in itself: he’s been hired as the American Diabetes Association’s Director of Type 1 Diabetes Efforts and Programs. This means he’ll be working with the ADA to better embrace T1Ds, something our community has criticized as lacking for many years.
We met up with Paul recently at the CWD Friends For Life conference in Orlando to learn more. Be warned, it’s not a short interview… but this guy truly is amazing!
DBMine) We’re blown away by your work, Paul. But first, can you tell us about your own diabetes experience?
I was diagnosed when I was 9 years old, and that was 55 years ago. I was diagnosed on my father’s birthday. It was the first time I ever saw tears in his eyes when it was confirmed I had diabetes, and I felt terrible that my father cried on his birthday.
But I was blessed with the best mother, father and family one could ever dream of. They educated and nurtured me, were patient and served as incredible role models supporting and helping me follow a healthy life. My extended family of aunts and uncles and friends were also very supportive.
Even as my mother especially — always supported by my father, brother and sister — let me take on more of my diabetes care, I always knew that she and they supported me enthusiastically and without reservation.
Unquestioned love coupled with empowerment is crucial to feeling good enough about yourself to meet life’s challenges.
I was blessed that our family doctor who diagnosed my diabetes told my parents that he “didn’t do kid’s diabetes,” and sent me to the Joslin Clinic for my diabetes care. Today, Joslin continues to be an important part of my life / care team.
Diabetes care has changed a lot over the years…
Certainly. In my early years, even though the interventions were cruder and less accurate, there were some strengths that resulted benefiting patients. First, the medical personnel were not so overwhelmed with numbers of patients as they are today, and second, the interventions were technically simpler which I think allowed for more thorough interaction with our health care providers. Remember also we were using Benedict’s urine tests to determine urine glucose, and all we had was U-40 or U-80 insulin and glass syringes. The choices were far less for far fewer people and the costs were also far less.
A good rapport with your diabetes doctor is so important. Has that played into your success?
Dr. Leo Krall (Joslin co-founder who passed away in 2002) became my doctor for 38 years, and now Dr. Arturo Rolla has been with me for the last 17 years. Both are incredibly bright and personable and loaded with passion for their patients, with a refreshing sense of humor. Each of them have supported me and helped ensure my health and my growth in the diabetes professional world. Each of them treat me with respect and as the expert on my own diabetes. Their objectivity, support and expertise is crucial and as needed, they probe and nudge me to look at something differently. Even with my superb training in diabetes I have forever realized that I must have objective experts reviewing my progress and making recommendations.
Diabetes camp has also been a huge part of your life, correct?
Yes, it was an early crucial addition to my life helping me to learn to more effectively manage my diabetes and enjoy a robust life when my parents decided I should go to Camp Joslin.
I was blessed to spend 43 years there!
Each year at camp was a time of growth for me. The first 12 years as a camper and a young leader especially shaped my real-world understanding of positive living with diabetes. At camp I powerfully learned that I was not the only one living with diabetes and that my friends and I could joke about some aspects of this disease! My camp friends continue to be incredibly important in my life. Several of them have become part of my extended family.
You’ve been involved with Joslin not only for your personal diabetes care and D-camp, but professionally as well…?
You’re probably best served by looking at my CV or resume to get an understanding of my growth during my Joslin years. In our conversation today I will highlight some key efforts that come to mind.
Most of my professional career has been at the Joslin Diabetes Center, where I was diagnosed and went as a kid. I had incredible opportunities during my 30 years at Joslin. And I forever remember and I am thankful for incredibly gifted colleagues/friends who ensured that my thoughts and program efforts got even better so that together we have often, but not often enough, positively impacted the lives of people living with diabetes.
I was responsible for assisting with, co-developing and/or developing many new things while I was at Joslin– behavioral health and exercise physiology, camp for kids and families including a focused program for adolescents who were struggling with life and diabetes challenges and wilderness camping; advocacy and government affairs that have expanded access to medicine and education for people with diabetes, teaching medical teams and Harvard Medical Students about the psycho-social challenges of living with diabetes, and corporate development that involved fundraising as well as securing and strengthening existing and new support initiatives for clinical, advocacy and research programs. I’m proud that over the years, I was part of the teams that worked with, recruited and managed celebrities like Mary Tyler Moore, John Ratzenberger of Cheer’s fame, Lee Iacocca, royal family members and countless others who were our patients to raise the visibility of Joslin’s diabetes efforts. At times it was a lot of fun taking a lead on public relations and other important work raising the visibility of diabetes and the credibility of Joslin and others in the diabetes movement.
In all my clinical and program efforts I work hard to be a part of a team that is sharing the most relevant, helpful education that helps individuals and loved ones feel more empowered to follow healthier lives.
Can you talk about your time at J&J?
After consulting in diabetes for about a year and a half, I worked at J&J from 2006 to 2009. My roles were director of medical affairs and advocacy for Animas, and director of professional relations and public advocacy with the J&J Diabetes Institute. All of that was fascinating, and involved training and monitoring compliance efforts between healthcare professionals, families, organizations, business people and insurers related to access and best diabetes practices. Like everything, it all revolved around relationships and working with each other in the community.
Since 2012, you’ve also been involved in Project HOPE. Can you explain that initiative?
Project HOPE in Non-Communicable Diseases is all about delivering medicine, education and resources to local community across the world relating to chronic conditions like diabetes and obesity. I currently serve as Senior Advisor for Diabetes, Non-Communicable Diseases on the Global Health Team.
I’m proud of HOPE’s innovative approach to diabetes care and prevention, called the International Diabetes Educator E-Learning Program (IDEEL). This is a global effort where we partnered with the Cornerstone On Demand Foundation and the Takeda Pharmaceutical Company to extend the reach of HOPE’s successful former diabetes education platform in India, known as the India Diabetes Educator Project.
We created IDEEL, an online diabetes educator course with the potential to reach a multitude of health care providers for years to come. It’s packaged as a self-paced online learning program that can be accessed from anywhere with a click of mouse and can be completed in a period of four months. The program is enhanced by a two-week internship under the guidance of an endocrinologist. When the student has successfully completed the online education and internship, he/she will have a comprehensive understanding of diabetes management across a broad range of age groups. The goal of IDEEL has been to train 4,500 educators annually in India and a total of 100,000 educators worldwide by 2018. This has already been recognized as an accredited education program by the International Diabetes Federation (IDF) for health care professionals, and we’ve been invited to adapt IDEEL and bring it to China, Mexico, and Brazil.
Our team also developed (led by Stefan Lawson) a pilot text messaging gestational diabetes (GDM) program in Mexico, which has shown significant success to help women make healthier lifestyle choices ensuring improved health for these mothers and their babies now and for their many tomorrows.
You also worked at PepsiCo on advocacy and global health?
I spent two-and-a-half years there. Did you know that 25% of their products (Gatorade, Quaker, Tropicana, Lays, Pepsi) are healthy beverages? That’s huge for our Diabetes Community. Part of what I did there was identifying and working with partners in chronic disease and wellness areas, including the Vitality Institute and the Robert Wood Johnson Foundation “Healthier Eating in Schools.” A big part of my job was working with various teams on sales and marketing efforts, to focus on healthy products and healthier lifestyle choices.
Over consumption of calorie dense, nutrition sparse foods is a significant problem in much of the world. We need to invite companies like PepsiCo that are truly working hard to bring good tasting, healthy products to more people to join us at the table so that together we can develop solutions to wellness more rapidly. We need to discourage unhealthy foods and encourage healthy foods and more steps. We need to embrace the healthy products of companies, help promote these and discourage the sale of unhealthy foods and products. Together we will bring about these needed, positive changes faster.
Can you tell us about your new position at ADA focusing on T1D?
I am honored that ADA has asked me to take a lead with this needed effort.
Partnerships are vital. We will be looking to partner with others who are working to improve the health and life outcomes for people living with diabetes. To do this most effectively we will be refining and expanding some of the existing successful efforts, developing new regional and national programs, and expanding the teaching and support available for diabetes professionals. We’ll be placing a keen focus on the 85% of the people living with T1 diabetes who are 21 years of age and older, and bringing the right electronic supports to expand the reach to those people.
Is there something specific you’d like to see ADA accomplish?
One of the things I’d like to see ADA do more on is insulin pricing.
The way I see it, everyone connected with diabetes can do something to make it better. We need more people living with diabetes (including loved ones, friends, colleagues) to get involved to bring about positive changes for the people we love, for the next generation and our country and the world. As a citizen and as a person connected with someone who has diabetes, it is unacceptable to do nothing!
How significant is it that ADA finally has an adult T1D focus?
It is huge, and it cannot be successfully done without people living with diabetes sharing the leadership of developing solutions to benefit people living with diabetes. It has to be a collaborative effort, far beyond just me.
You’ve been hugely involved with Children With Diabetes (CWD) over the years… tell us more about that?
I am blessed that (CWD founders) Jeff Hitchcock and Laura Billetdeaux have included me in the ever-growing CWD family. It’s been probably about 14 or 15 years now, and it was particularly powerful being honored there a few years ago with the Jeff Hitchcock Award that is given out every year for people doing good and making a difference in diabetes. CWD is a life-enhancing program for families living with diabetes. I’m working with Jeff and other board members on many things, and we anticipate that the CWD successes and programs will continue to grow over the next few years.
What are the biggest changes you’ve seen in the patient community in your lifetime?
When I was diagnosed some 50+ years ago far less people had diabetes (less than five million when I was diagnosed). Some of the advocacy issues were actually easier than today, as there were far less people needing appropriate support for their diabetes. There were also far fewer children with diabetes in schools (closer to 1 in 1,500 at that time and now a larger population and closer to 1/500 or even 1/450), so it was rare that a school had more than 1 if any child with type 1 diabetes at all.
Type 2 diabetes was unheard of in children in the 1950’s. The schools had far less diabetes and other childhood medical conditions to contend with so at times we got more positive attention. Some of the children with diabetes and other medical conditions stayed at home rather than go to the public schools. My mother, with Dr. Krall’s support, educated each of my teachers until I started to get old enough to do this myself — always with my mother and family in the background.
With the growth of the number of children with diabetes one of the biggest problems our families living with diabetes face is the lack of understanding and support available to children in our schools. Some of the advocacy wins for children in the schools led by Crystal Jackson (of ADA) and so many volunteers (mothers and fathers) have been vital to ensure more optimal academic and social growth of children with diabetes.
What would you say are today’s biggest challenges in diabetes advocacy?
Access is a key issue we have to advocate on. The insurers, public and private, are now preventing some people with diabetes from getting the medicine, education, technology that has been agreed to by the patient and their prescriber. How is it reasonable or even medically right that an insurer can say that we the patients don’t need something that is prescribed?
Examples of this are the fact that Medicare does not approve CGM for seniors. Saying NO to anything that makes me safer and more balanced with my diabetes that has been prescribed by my physician is wrong. Are these insurers, including our government, saying to seniors that now that your most productive years are coming to an end, we do not value you as a citizen??
In my earlier years with diabetes what the doctor said (prescribed) was done for the patient. The insurance companies never dared say no to the patients’ doctor as now happens with some frequency. This must not occur. It is a travesty that we and our leaders who say they represent our best interests have let the insurers interfere with patients’ care and diminish our chances of a healthy life.
What are you most proud of in your own diabetes advocacy legacy?
My progress in advocacy has always occurred because I have been blessed to be surrounded with the best of people who are loaded with passion, have enough expertise and are positive leaders. I continue to be blessed with great diabetes advocates in my life who continue to teach me as we support each other to improve the lives of each other and all people living with diabetes.
A few of my bigger wins that I helped lead and co-lead were done with my cousin, Bill Cass, who was the Vice Chair of the Health Commission in Massachusetts. We secured passage of a bill that secured insurance coverage for glucose monitoring strips around 1992, and then we secured passage of the bill that guaranteed reimbursement for diabetes education. At the time the American Diabetes Association referred to it as the most comprehensive legislation on insurance coverage on diabetes education in the country.
Margie Lawlor of the ADA and I, along with others, also started one of the first diabetes courses for school nurses. This is an area that I am getting re-involved in now, as the need for enough understanding in our schools on diabetes remains vital.
Ten years ago, I along with Debbie Jones and Shelley Yeager, launched the first international leadership training program for young adults with diabetes ages 20-30. In just several years these young leaders from all over the world have become leading advocates in their countries ensuring that positive opportunities continue to grow for people living with diabetes in their countries.
My wellness career focused on diabetes has allowed me to help develop, support and participate in programs throughout each of the 7 continents. Some of this work was done while I was at Joslin, J&J, PepsiCo and Project HOPE. I have been blessed to serve with organizations/companies that have a desire to positively influence health outcomes in the world.
I am proud of my past work with others, but I believe it is most important to focus on what still needs to be done.
Where would you aim your biggest efforts right now?
Today our focus MUST be convincing the leaders in business, government, schools and insurers that adequately supporting people living with diabetes with appropriate education (diabetes self-management training), medicines, technology, etc. does indeed help ensure that we realize happier, healthy, more productive lives. With healthier lives we avoid serious complications and realize far more productive lives paying our own bills, our taxes, for much of our health care, supporting our children etc.
It is the wisest of investments to support more optimal health for people with diabetes so that we remain maximally productive and contribute to the success of our nation.
Thanks for taking the time to talk, Paul. We can’t wait to see what you bring to ADA in your new position!