The American Diabetes Association (ADA) exists to cure and prevent diabetes. This article examines the ADA’s quality practices around goal setting, ongoing objective measurement, reporting of progress (or lack of progress), and public communications against their stated cure and prevent mission. It should be noted that the ADA has a third mission: to improve the lives of all people affected by diabetes, which is not included in the scope of this article.
The 2012 performance of the ADA was compared to the American Cancer Society (ACS) and the American Heart Association (AHA). Three benchmarks were explored: 1) Reliance on quantitative measures as they relate to the ability to cure/prevent disease. 2) Functionality, ease of use, and quality of preventative information published on the website. 3) Percentage of money expended on research, program services, fundraising and management.
This article does not assess or judge whether diabetes is a more difficult or easy disease to prevent and cure than cancer or heart disease. It’s plausible, for example, that type 1 diabetes (discussed below), being an autoimmune dysfunction, is a particularly challenging problem to solve. On the other hand, type 2 diabetes (also discussed below) is influenced by all the contributing lifestyle factors that are common to heart disease and some cancers. In any case, standard quality practices for measuring, reporting, communicating and continuously improving are always the same, regardless of the level of difficulty involved.
What is diabetes?
As of 2011, 25.8 million Americans were diagnosed with diabetes, a metabolic disorder where high levels of sugar (glucose) are present in the blood. There are three types of diabetes: type 1, type 2 and gestational diabetes. Type 1 diabetics are roughly 10% of the diabetic population or 2.6 million people. This is the kind of diabetes where the body is not able to produce insulin because the cells in the pancreas that produce Insulin have been destroyed by the autoimmune system. The cause is unknown, and treatment by insulin injection is always required. Type 1 diabetes used to be called early onset diabetes or juvenile diabetes because it typically presents in children, adolescents and young adults. Type 1 diabetes has been increasing at a rate of 3% a year. Overall, from 2001-2009 the incidence of type 1 diabetes increased by 23%.
Type 2 diabetics represent 90% of the diabetic population or 23.2 million people. This is the kind of diabetes where insulin is produced by the body but the insulin either doesn’t function properly (called insulin resistance) or there’s not enough insulin to process the excess glucose. Type 2 diabetes used to be called adult onset diabetes because it typically occurs at middle age or later; however, type 2 diabetes is now being seen in children as well. The cause of type 2 diabetes is generally thought to be linked to a genetic predisposition, excess body weight, a diet high in fats, caloric sweeteners and processed foods, and lack of exercise. Type 2 diabetes is typically treated through a combination of diet, exercise, medications and sometimes insulin injection.
Gestational diabetes is a temporary condition that occurs in 10-18% of women in the third trimester (around the 24th week) of pregnancy. In some women, the hormones needed for development of the baby cause insulin resistance. This means the insulin doesn’t work to get the excess sugar out of the mother’s blood. Gestational diabetes does not cause birth defects but it can result in a large baby that requires a C-section, or other size-related problems. It may also result in type 2 diabetes for both the mother and child later in life.
Quantitative Measures Regarding Prevention/Cure of Disease
The ADA makes the pledge and chants the mantra to stop diabetes, yet it also predicts that one out of every three Americans will have the disease by 2050. This dire projection blocks confidence in the ADA’s ability to influence the cure, prevention or slow-down this disease. For the past 50 years, the number and percentage of people diagnosed with diabetes has been on a progressive uptrend. Historical population statistics from the CDC are provided below.
YEAR
POPULATION WITH DIABETES
PERCENTAGE
1958
1.58 million
0.93
1968
3,18 million
1.62
1978
5.19 million
2.37
1988
6.16 million
2.56
1998
10.48 million
3.90
2008
18.81 million
6.29
2011
25.8 million
8.30
The ADA does not differentiate by type of diabetes, and it has not established a time goal for stopping it. Two measurable goals around prevention of type 2 diabetes appear in the ADA’s 2012-2015 Strategic Plan. They are: 1) By 2015 the people who are aware they have pre-diabetes will increase from 7.3% to 15%, and 2) there will be a 10% increase in pre-diabetics who engage in weight control, weight loss, physical activity and healthy eating. Since no baseline is provided for the second measure, it has no real value because progress (or lack of progress) cannot be determined.
Other public communications from the ADA are not organized around or focused on cure and prevention objectives. Look, for example, at the ADA’s 2013 Organizational Priorities, which are located here. There are five priority categories. The words cure or prevention are missing from all category titles. There are 15 priority initiatives. Not one is quantified with a measurable goal.
Compare the ADA’s treatment of measurable cure/prevention statistics to the American Cancer Society’s treatment of statistics. They publicly obsess over numbers. Last year 1.6 million people were newly diagnosed with cancer, and about 577,000 people died from it. Since 1991 the national cancer mortality rate has declined by 20%, a decline of about 1% per year. Even more good news: the ACS projects that it’s on track to meet the goal of a 25% decline in the cancer mortality by 2015. Kudos to the ACS for a cancer survivor population at 14 million strong and growing.
Now compare the ADA’s performance to the American Heart Association’s. Every year about 715,000 people have a heart attack, and about 600,000 people die of heart disease. Heart disease, as many people know, is the leading cause of death in the United States. For the past three reporting years the AHA saw a 6.1% decline in deaths from cardiovascular disease and stroke. That means roughly 32,000 deaths were prevented. The AHA is making measurable (and hopefully sustainable) progress toward their goal of a 20% reduction by 2020.
Bottom line: The ACS measures and reports its progress and has achieved a remarkable 20% decline in mortality rate. The AHA measures and reports its progress and has achieved a 6.1% decline in mortality rate. The ADA does not measure or report its progress, and the diabetes trend is predicted to get worse.
Website Functionality, Ease of Use, and Quality of Prevention Information
The ADA website has a busy, friendly vibe. It caters to people who have diabetes and to people who might want to support ADA activities or to make an ADA donation. Site functionality and navigation are both okay. Prevention content is not accessible from the primary menu, but can be found under the “Diabetes Basics” tab. It offers visitors a happy three-generation picture and a 43-word explanation about how to prevent diabetes. Yup, just 43 words are dedicated to this mission critical objective. This prevention message is so brief and so general that it’s useless. The ADA has an enviable worldwide platform, but it does not lead when it comes to explicit and impactful lifestyle direction. This is especially disappointing considering that lifestyle choices are a contributing cause and also the potential prevention and cure of type 2 diabetes.
Things the ADA does well: Basic information, My Food Advisor, Community Services, Research Discoveries, Social Networking, Donations and Fund-Raising Activities.
Things the ADA could do better: The words cure and prevention should be prominently displayed and explained on the website. The website should cater to, and provide a stronger focal point/voice for, type 2 diabetics, the group that represents 90% of the diabetes population. A specific, actionable and free diet and exercise program for type 2 diabetics and pre-diabetics should be featured. It’s a bit cheesy, by the way, to withhold key pieces of information and then offer them in fee-based products.
Recommendation: Use the American Cancer Society website as a benchmark. It offers a more streamlined and potent website experience for the visitor.
Comparative websites: www.diabetes.org; www.cancer.org; www.heart.org
Money Expended on Research, Programs, Fundraising and Management
(reported in millions)
ADA: Diabetes
ACS: Cancer
AHA: Heart
Total 2012 Revenues
228,492
925,390
639,525
Research
19.8% or 45,376
17.3% or 160,139
20.1% or 128,525
Total Programs
64.7% or 147,892
77.1% or 713,491
76.2% or 487,529
Fundraising
20.7% or 47,232
23.5% or 217,637
12.6% or 80,927
Management
4.8% or 11,061
6.4% or 59,361
7.6% or 48,933
In terms of percentage of dollars expended on research, at 19.8% the ADA is in the middle of the pack. What’s unclear is whether the ADA allocates research dollars based on type 1/type 2 populations. Does 90% or $40,838 go to research for type 2 diabetes? Or do the bulk of research dollars go to type 1 diabetes? We don’t know because they don’t tell us. As an interesting side note, the JDRF (formerly the Juvenile Diabetes Research Foundation), which is totally dedicated to the cure/prevention and treatment of type 1 diabetes, raised $204.7 million in revenues in 2012 and 60% or $123.9 million went directly to research.
In terms of percentage of dollars expended on total programs (including research), the ADA lags behind the two other associations by 12-13%. For every dollar the ACS and AHA takes in, 76¢-77¢ goes to research or public programs. For every dollar the ADA takes in, only 64¢ goes to research or public programs. The American Cancer Society and American Heart Association spend more on activities such as public and professional health education, prevention and detection, patient support and treatment than the American Diabetes Association does. Another bottom line. The ADA is less efficient and less productive with the money it brings in.
In terms of percentage of dollars expended on fundraising, the American Heart Association is the clear winner at 12.6%, and the ADA is in the middle. It costs the ADA about 21¢ in fundraising for every dollar they make.
The last comparison is to cost of management. At 4.8%, this is the only measure where the ADA is ahead of the two others. The irony is that the ADA might want to consider expending more money for a management team who can run the organization more efficiently and who can demonstrate a relentless reliance on measurable improvements in cure and prevention statistics.
Summary
Diabetes, cancer and heart disease are all pressing and complex health problems. The American Cancer Society and the American Heart Association have figured out how to make an impact and how to measure and report progress toward cure and prevention. The American Diabetes Association can figure it out too. The purpose of this article is to persuade the ADA to kick up their performance by paying more attention to the measuring and reporting of numbers and by benchmarking to strong non-profit health organizations. There are currently 38 members on the ADA Board of Directors, chaired by Karen Talmadge. Someone must know something about how to do this.
The American Diabetes Association aspires to be a billion-dollar player like the nonprofit big boys. To reach this goal, it needs to perform like the nonprofit big boys. Success isn’t just about how many magazines the association publishes, how many Facebook likes it gets, or how many big pharma companies make major donations. It’s achieving measurable, repeatable and reportable cure and prevention results. It’s squeezing a little more performance out of every donation dollar. It’s relaying prevention messages that count rather than just take up space. And it’s serving type 2 diabetics and pre-diabetics with proportionally appropriate allocation of research dollars, website targeting and program services.
We do not want a future where one out of every three of us becomes a part of the type 2 diabetes story. American Diabetes Association, we’re counting on you.