One in 3 adults in the United States, about 100 million people, are living with diabetes or prediabetes, according to the CDC. Another case is diagnosed every 21 seconds. The American Diabetes Association estimates the total cost of diagnosed diabetes, including lost productivity, reached $327 billion in 2017, a big jump from $245 billion just five years earlier. That’s roughly one-tenth of the astronomical $3.5 trillion in annual U.S. health expenditures. People with diabetes are at risk for other chronic conditions such as heart disease, as well as dangerous conditions including stroke, amputation, kidney failure and blindness. The challenge is finding ways of preventing diabetes when possible and managing it optimally when prevention fails.
POLITICO recently convened a working group of policymakers, researchers, clinicians and experts to explore the growing diabetes crisis, and identify challenges, gaps and solutions. Participants included researchers from the National Institutes of Health, PCORI, congressional staff and academic experts, as well as health care providers ranging from endocrinologists to pharmacists and community health workers. In an on-the-record discussion moderated by POLITICO’s executive editor for health care, Joanne Kenen, the group found areas of broad consensus on policy priorities, the research agenda – and the alarming magnitude of the problem. The conversation mostly focused on Type 2 diabetes, particularly regarding prevention, although some aspects of the discussion particularly surrounding disease management and care coordination apply as well to Type 1. The conversation was held under Chatham House rules. It was on the record, to encourage a free and frank conversation, but comments were not attributed to individual participants. They are listed at the end of this report.
Story Continued Below
The discussion, outlined in this working paper, looked at prevention and prediabetes; management of early diabetes, and challenges with more advanced cases with serious comorbidities. A few common themes:
– We know less than we think we do about diabetes prevention: Interventions often delay onset of diabetes, but do not ultimately prevent it. And we are not always acting optimally on what we do know.
– The scientific/nutritional/public health community might have taken a “wrong turn” on food. The emphasis on lowering fat intake to prevent heart disease led to a “diabetogenic” American diet rich in carbohydrates and sugar.
– The challenge of diabetes will not be solved individual case by individual case. It requires a comprehensive approach, with care taking place in the community, not just in clinics and hospitals.
Prevention and prediabetes
Diabetes is a silent disease in many respects; people often do not know they have it until a crisis hits. One in 4 adults with diabetes have not been diagnosed. (Prediabetes also is not detected in a timely manner.) This is a huge missed opportunity. The health care system must do a better job of preventing diabetes – and identifying prediabetes when disease can still be averted or reversed.
Prevention requires a holistic approach to lifestyle, nutrition and exercise. But that goes beyond changing individual behavior (which is hard to do.) It requires attitudinal shifts across entire populations and communities.
In addition, more people are being diagnosed with Type 2 diabetes at a young age, including many women who experienced gestational diabetes (once thought to be less of a risk factor) during pregnancy.
Diabetes prevention requires a more effective population health approach, taking into account social determinants of health including poverty and availability/affordability of healthy food.
The prevention research agenda must focus on diabetes in younger people, and on the recently recognized risks for women with gestational diabetes and their children.
“This epidemic of type 2 in kids, this is a huge societal problem and we don’t yet have research that proves how to deal with that. It’s an area we need to invest in,” one participant said.
“What’s really scary is that the offspring of those women who have had gestational diabetes are more likely to be obese and to have factors that put them at risk for Type 2 diabetes, and that’s the population that we don’t have an effective way to treat,” said another.
Behavior change is hard – and we can’t “blame the victim” for unhealthy eating or lack of exercise, particularly “if they’re working two or three jobs to get by,” as one clinician put it.
“We can’t put the onus on the person, if they live in an unsafe neighborhood, or if [they can’t afford] healthy food. The health care system that will pay for hospitalizations, emergency care and amputations won’t pay for prevention. And behavioral modification is hard.”
In medicine and policy, we undervalue preventive care and early intervention. Yet we also overestimate how effective prevention has been; most of the “successful” prevention programs did not in fact prevent diabetes, although they did delay it significantly.
“We never think about that child who is born with no ‘diagnosis.’ They don’t get services until they’re labeled ‘obese.’ They don’t get services until they’re labeled ‘pre-hypertensive.’ They don’t get services until … ‘Oh, this person is diabetic.’ ‘Oh, we’re going to have to have an amputation.’ They’re going to get everything now.”
“I think you overestimate how much we know. I think you overestimate how successful the diabetes prevention program was,” said one person. “We’ve continued to follow those people now for over 15 years. Most of those people who got that lifestyle intervention, which was 16 individual sessions with motivational interviewing, the best we could possibly throw at them, most of those people now have diabetes.”
Yet participants noted that it’s essential to remember that sustained, committed, multi-pronged public health or population programs can and have worked. The fight against tobacco use has shown that.
“There are excellent models of mass population behavior change. In the United States in 1964,
44 percent of the adult population smoked. That’s now down to about 15 percent. For most of those years smoking was the most heavily marketed product in our country. It was highly addictive, it was socially acceptable, and yet, we were able to get people to change. And the way we got people to change is not with magic bullets but not with one or two best practices but with a comprehensive campaign of approaches.”
Few people are diagnosed with diabetes and only diabetes; most diabetics already have other conditions such as high blood pressure and high cholesterol, increasing the risk of stroke and heart disease. They can still be managed – and much of this can be done in a primary care setting. But focusing only on diabetes misses the fuller picture – and sometimes diabetes gets short shrift in primary care because the other conditions pose a more immediate or, as one working group participant put it, a “louder” threat.
In addition, the U.S. has a shortage of primary care doctors – and these doctors face tremendous time pressures to address a host of conditions and needs during brief office visits. Under traditional fee for service, panelists noted, the doctors are not paid for the time they spend talking to patients and coaching them on diabetes management – or even to make sure they follow up with diabetes education and management classes and consults to learn about nutrition, lifestyle changes and medication.
“… It’s relatively straightforward, lifestyle modification, send them to a diabetes educator if the insurance covers it, send them to a nutritionist if the insurance covers it, but sometimes it’s a challenge to get them to those. So, the primary care physician becomes their nutritionist, becomes their diabetes educator – even though he or she doesn’t have the time.”
Invest more in primary care – broadly defined.
“It’s a team-based sport and it’s not just the doctor. We recognize that. And there are other members of the team that can contribute things that the physician cannot.”
Expand community-based and community-rooted care, be it through diabetes educators, peer-to-peer counseling or community health workers who understand the day-to-day environment and realities. It’s the community health workers, not the endocrinologist, who will know how to work with the patient who says, “I can’t even focus on a healthy meal because I just got evicted.” Build bridges between the community care, and the clinic and hospitals. Recognize that community pharmacists – there are still a lot of neighborhood drug stores – are a trusted but underutilized resource in diabetes and medication management and education.
“One of the things we’ve done is really bring in an intentional community health advocate or community health worker practice model in our system. … We’ve really not just said, ‘We’ll go in the community and figure that out,’ but we’ve managed them from the bedside, out, back home, to make sure that they’re having a robust clinical care model that really has an impact. And so, we brought the community inside and taken it back outside.”
“Everybody gets that the clinic walls are not the boundaries of health care, that primary care has to merge much more closely with the community, that out in the community there are not only the problems that cause disease but also the answers for managing it if we can tap into them.”
Act sooner, rather than later, clinicians and researchers urged.
“Getting to these conditions that are going to progress earlier is much better. The condition is – and the associated conditions are – more reversible at that time, and we actually have lots of evidence now that behaviors as well as more drastic measures can reverse diabetes at an early stage.”
Managing advanced disease
Diabetes is a continuum, as one panelist summed it up. Patients spend perhaps a decade with prediabetes and a decade with early diabetes that might be controlled just with diet or metformin (a safe and inexpensive generic drug) before the condition progresses. Patients need more (and more expensive) medications, more management and eventually insulin.
And there are more complications than much of the public understands. Diabetes
increases the risk of numerous other illnesses, including dementia and heart disease. In traditional fee-for-service medicine, there’s often no quarterback to oversee a patient’s overall care. No one is in charge. The oncologists can’t adjust the insulin in a patient who, pre-chemo, never needed insulin. The cardiologist is looking at blood vessels, not blood sugar. The neurologist isn’t asking whether a patient with early Alzheimer’s can manage their diabetes drugs. Nor are there enough endocrinologists to go around. The ongoing (albeit still slow) transition from fee-for-service medicine to alternative payment systems should reward care management, prevention and earlier intervention. But there are plenty of unknowns – and even among the more developed programs, room for improvement. As one participant noted, in 2015 only 20 percent of all Medicare Advantage plans – supposedly the most integrated care available – had a five-star rating on diabetes management.
“There are a lot of things we know that improve diabetes. They can reduce complications, but they have been expensive, so we also have to look at that.”
Treat the patient, not the pancreas. Treat tomorrow’s crisis, today.
“Diabetes is a quiet disease. This is very important. And I think it goes into the psychology of patients, how they behave. If diabetes was a loud disease – I call the others loud diseases, like heart attack – it would have gotten the attention it deserves. It’s very easy for people in the midst of prioritization to ignore diabetes, [push it] to the back as if nothing is happening. So, there’s a psychological component. How do we push it into the front of their attention rather than keeping it in the background?”
“In some health care systems, they’re starting to realize that it’s really expensive when people keep showing up at the emergency room. So, for those really expensive patients they’re starting to give people help; they’re starting to have people call them and encourage them to take care of themselves. But, you know, this should be delivered much more broadly. And I think as we get away from fee-for-service and as we get into managed health care plans, plans then have the freedom to do what’s effective.
Participants said there’s enough money in the $3.5 trillion health care system to address diabetes – but it’s not being spent correctly. It’s probably worth studying and trying to adapt some cost-effective models developed overseas.
“We have enough dollars. They just are being spent in completely crazy ways, including the cost of these drugs, and some of the costs of these interventions.”
“There are international models of ‘frugal intervention’ – the world is facing diabetes too, it’s not just a U.S. problem. In many countries now, too, you are facing the dual burden … trying to figure out how to address both communicable and non-communicable diseases.”
The research agenda must be broad and comprehensive. There’s not enough accurate, certain science on food and nutrition – and the public may end up discounting such advice when it keeps changing. More needs to be learned about preventing – not just delaying – diabetes onset. Researchers need to examine which drugs – new and old – are cost effective and determine the optimal time for patients to start them.
Above all, it’s important to understand that preventing and managing diabetes – which encompasses managing weight – isn’t just about diabetes. It’s the prism for a healthier America.
“Diabetes is really sort of a gateway disease and a model for chronic care. People with diabetes are at increased risk for practically everything you can think of, you know, from heart disease to cancer to cognitive dysfunction to incontinence, depression, you name it. So, when you start to think about a model of integrated care, diabetes is the perfect disease to [address]
It’s not the diabetes per se; it’s all the behaviors that make you healthy.”
OLUWARANTI AKIYODE, PharmD, associate professor, Advanced Diabetes manager, Howard University Hospital Diabetes Treatment Center
OLENGA ANABUI, director, Penn Center for Community Health Workers
LAUDAN Y. ARON, senior fellow, Health Policy Center, The Urban Institute
KEYSHA BROOKER, senior community health worker, Penn Center for Community Health Workers
EDWIN B. FISHER, PhD. global director, Peers for Progress; professor, Department of Health Behavior, Gillings School of Global Public Health, University of North Carolina at Chapel Hill
JUDY FRADKIN, MD, director, Division of Diabetes, Endocrinology and Metabolic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health
ANN GREINER, president and CEO, Patient-Centered Primary Care Collaborative
LOGAN HOOVER, health legislative assistant, Office of Rep. Tom Reed (R-N.Y.), co-chair, Diabetes Caucus
ELIZABETH JURINKA, health policy adviser, Office of Sen. Ron Wyden (D-Ore.)
EMEOBONG E. MARTIN, MPH, regional director of community health, Corporate Community Health Department, MedStar Health
JOE SELBY, MD, MPH, executive director, Patient-Centered Outcomes Research Institute
RHONIQUE SHIELDS, MD, MHA, FAAP, vice president, Medical Affairs, Holy Cross Health Network
ELIAS S. SIRAJ, MD, Dr. Med., FACP, FACE, professor and chief of the Division of Endocrine and Metabolic Disorders and Director of the Strelitz Diabetes Center, Eastern Virginia Medical School
ANDREA THOUMI, MPP, MSc, research director, Global Health, Duke University Margolis Center for Health Policy
CHRISTIE BLOOMQUIST, vice president, Corporate Affairs and Government Affairs, AstraZeneca *Sponsor
ROD WOOTEN, vice president, Cardiovascular and Metabolic Diseases, AstraZeneca *Sponsor
Note: The participants had no financial ties to the event sponsor. (Astra Zeneca employees are identified.)