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Against the backdrop of a government shutdown precipitated by healthcare issues and the rollout of the insurance exchanges mandated by the Affordable Care Act, a conference called Diabetes + Innovation 2013 took place in Washington, D.C. earlier this month. The gathering, organized by The Joslin Diabetes Center at Harvard Medical School, focused on prevention and treatment of this devastating disease, one of the costliest in economic and human terms. It attracted leaders from medicine, public health, academia and the business and nonprofit worlds. Unfortunately, several government officials scheduled to speak did not participate because of the shutdown.
Who’s in charge: Patients themselves
Unanimity seemed to prevail regarding the idea that the greatest weight of the management of diabetes falls squarely on the shoulders of patients. Many speakers stressed that diabetes can overwhelm a person, leaving them feeling different, scared and alone, emotional reactions that can reduce the person’s ability to take care of themselves. Hadley George, age 15 and a speaker at the conference, said, “The hardest thing about having diabetes is that you never get away from it.”
George created the online group Type One Teens as a place for other kids with diabetes to connect both online and through face-to-face social activities. Her group exemplifies a trend described by Larry Weber, the chief executive officer of a digital marketing agency called the W2 group, as “a quick evolution to microsegmented social media.” This trend, Weber said, offers huge value to patients, who need and can find advice and support instantly.
There are two main types of diabetes. type 2 diabetes is the most common, affecting 90 percent of those with diabetes. In the past, type 2 diabetes, in which the body become insensitive to insulin and therefor has trouble regulating blood sugar, generally arose in people older than 30 years. Today alarming numbers of people are developing this disorder in childhood and adolescence, mostly because they are obese. Although genetics do play a part in the development of type 2 diabetes, the greatest risk factor is obesity.
Type 1 diabetes, which results from an autoimmune reaction that destroys insulin-making cells, tends to occur in young, lean people under the age of 30, although sometimes, older people also develop the disease. Of all people with diabetes, only about 10 percent have type 1 diabetes; the other 90 percent have type 2 diabetes.
A public health problem of epic proportions
Diabetes patients face heightened risks for high blood pressure, heart disease, stroke, kidney failure, blindness and the loss of limbs. In 2011, 26 million Americans, or 8.3 percent of the U.S. population, had the disease, but 7 million didn’t know, having received no diagnosis. Furthermore, the Centers for Disease Control and Prevention (CDC) has estimated that 79 million American had prediabetes, a reversible condition that greatly heightens a person’s risk of developing the full disorder. John E. Anderson, president, medicine and science, of the American Diabetes Association, said at the meeting that “only 7 to 12 percent of patients with prediabetes know that they have it.”
If current trends persist, 53.1 million Americans will have diabetes by 2025, Novo Nordisk reports. By then the disease will be costing the U.S. $514 billion, a 72 percent uptick from the cost in 2010.
Some other countries have an even worse diabetes problem. Bandar Hamooh, CEO of the Al-Nahdi Medical Company, a large chain of Saudi Arabian pharmacies now in a partnership with Joslin Diabetes Center, stated that if present trends continue 50 percent of Saudis will be diabetic in 2030. Among other efforts, Al-Nahdi is bringing diabetes screening centers to public transportation sites.
Key themes of the meeting
- The main caregiver for a person with diabetes or prediabetes is that person him- or herself. The primary task involves making good choices around food and exercise. Diabetes prevention and treatment efforts need to make healthful choices easy for people who make these decisions, not in isolation, but within families and communities. The right choice needs to be the “default choice,” several speakers said, whether it involves healthy eating at work or at home, exercise or sleep.
- Behavior change ought to come first in a treatment plan. Improving eating and exercise habits offers more potential benefit than medication. The same kinds of habits that help address diabetes also reduce a person’s risk of heart disease, cancer, mental illnesses and musculoskeletal disorders like osteoporosis.
- People find improving health habits hard. To succeed, they often need lots of support. This can come from diverse caregivers, in addition to doctors–nurses, social workers, nutritionists, etc. Health coaches, especially trained peers, can also contribute greatly as can online connections through social media.
Primary care is changing but not fast enough
Many speakers emphasized that primary care physicians, with appropriate help from other members of a care team such as nurses and social workers, ought to be able to manage the medical side of caring for diabetics and prediabetics without lots of referrals to specialists. But the U.S. healthcare system makes it hard for them to do so, and it often leads primary care doctors to refer patients to specialists when specialty care is not really necessary. Several speakers cited data that most diabetics see their primary care physician only once or twice a year for visits that last about 7 to 12 minutes because of insurance company practices. The insurance companies limit how much time a primary care doctor can spend with a patient for which the doctor will be compensated.
Traditional fee-for-service models pay physicians for time spent with patients and for tests or treatments administered. This approach fails to reward doctors for providing high-quality care or for improving patients’ health outcomes. Currently though “there’s huge experimentation now for paying for things differently,” according to Susan Manzi, a professor at the Temple University medical school also with the Allegheny Health Network. At the meeting much discussion centered on telephone calls and video visits becoming means of providing compensable care. The ACA encourages experimentation to pay for quality and outcomes. Under some of the new approaches, both doctors and patients receive direct cash rewards for measurable improvements in patients’ health indicators or status.
Even if primary care doctors had more time, helping patients make lasting behavioral changes falls outside their area of expertise. They have generally received little or no training in nutrition or behavior change in medical school, conference speakers emphasized. Clearly, multiple speakers said, patients need to learn and practice new habits with help from sources besides physicians.
Blowing up the usual approach to primary care
Although most participants on panels at the conference said that a shift away from fee-for-service would be both complex and gradual, a few disagreed. “Let’s just stop doing fee-for-service and start doing something else,” said Rushika Fernandapoulle, the CEO of Iora Health, a company that has set out to overhaul traditional primary care in part by pairing member patients with both a personal physician and health coach. Fernandapoulle said that Iora has doubled the usual 5 percent funding for primary care and seen “amazing results.” These, he said, include having 90 percent of diabetic patients under control, cutting emergency room visits in half, and decreasing hospitalization by 40 percent.
Grace Emerson Terrell, the CEO of Cornerstone Health Care, reported that her company “blew up the physician-centered model” and the brief primary care visit, redesigning patient care and financial incentives. “We’ll give compliant diabetics free medications if they work with wellness coaches,” she said, adding that their data “is starting to look good.”
Full implementation of the Affordable Care Act (ACA) should bring about many positive changes, a lot of the speakers said. Today, one can say that “too late, too much, last minute is where the money is” in American healthcare, said Michelle J. Lyn. She’s a professor of community and family medicine working with the Duke Translational Medicine Institute. Soon primary care will be more generously compensated, and quality will be rewarded. In fact, Fernandopulle said, “The big elephant in the room [is the fact that] we will need a lot fewer specialists than we have now.”
The ACA supports preventive medicine, speakers said. It will authorize payment for care providers, such as trained peers serving as community health workers, who did not usually qualify in the past for insurance reimbursement. These kinds of workers have often proved especially able at helping patients make lifestyle changes in low-income areas heavily populated with African-American or Hispanic residents that are especially hard hit by the diabetes epidemic. These trained neighborhood residents with backgrounds just like the patients, have often been able to forge trusting, ongoing, hands-on relationships that it’s not a clinician’s job to provide.
“Health Ambassadors” making a great difference
Osagie Ebekozien, who runs the Whittier Street Health Center, a “comprehensive health and social services center,” in Boston has seen the value of trained peers. In Roxbury, a low-incomeneighborhood of Boston, 50 percent of the residents are African-American, 5 percent are Hispanic and the diabetes rate is twice Boston’s as a whole. Such health disparities are common. Diabetes disproportionately strikes people who belong to ethnic minorities and to those without many resources, in terms of income or education.
Osagie Ebekozien of the Whittier Street Health Center speaking in early October. Credit: Panoramic Visions/Abbas Shirmohammad (C) Joslin Diabetes Center, used with permission.
Ebekozien’s team recruited local women who themselves had type 2 diabetes and trained them as “health ambassadors” to reach out to their neighbors by telling tgeir own stories. “One of our health ambassadors had lost 80 pounds. Another had lost her mother to diabetes. Another used to think that the ER doctor was her primary care physician,” Ebekozian said. Whittier also organized a sort of bookmobile for fresh food called the Fresh Truck Mobile Food Market.
The Health Ambassadors sometimes helped their neighbors learn to shop and cook nutritious food. Sometimes they accompany them to doctor’s appointments. Efforts like these can have special importance in areas where residents of color may feel downright wary of medical professionals, several speakers said. “Trusted voices make the most effective messengers,” said Anne Filipic, president of Enroll America, a nonprofit created to help Americans sign up for insurance through the new exchanges.
Food and exercise trump drugs
In an instant survey conducted among the meetings attendees, 77 percent of them stated that a treatment for a diabetic should emphasize healthy eating at work and at home along with ample exercise as a first line of action, before medications came into play. The next morning, a representative of Sermo, an online community of about 125,000 physicians, reported to the group that the Sermo physicians surveyed on the same issue agreed.
To Gail Christopher, the vice president for program strategy at the WW Kellogg Foundation, “Food is the critical factor in diabetes.” She added that “the person’s self perception and their relationship to food” also matters immensely. With food deserts so common, though, people often lack access to healthy, affordable food. Growing up in our “obesigenic food environment,” as many speakers called it, even those with access to wholesome food often lack the knowledge, skills and support to buy and prepare healthy meals.
Is obesity a social disease?
People generally struggle to change their lifestyles and often need lots of support. The behaviors involved are almost always social ones, reflecting influences of family and community. Patrica Doykos, director of the Together on Diabetes initiative at Bristol-Myers Squibb, called for a “radical rethink” about diabetes and asked, “Is diabetes a social disease?”
Complicating the process of forming new habits, many people with diabetes or prediabetes have mental health issues before they receive a diabetes diagnosis, as several speakers noted. For other individuals, the diagnosis can trigger mental health problems including depression. “Primary care is most effective where there is true integration of behavioral health, not parallel play,” said Bruce Goldberg, MD, director of the Oregon Health Authority. Lisa Whittemoreconcurred: She said that her organization BlueCross BlueShield of Massachusetts requires that a clinical social worker be part of every diabetes care team.
To make and maintain new behaviors, people with diabetes or prediabetes often need lots of outside reinforcement. Some people find this at bricks-and-mortar setting like the YMCA, which is now deeply involved in diabetes prevention. With funding from the CDC and the UnitedHealth Group, the YMCA has rolled out a yearlong, evidence-based diabetes prevention program to 24 states. The program costs less than $300 per person, according to John Anderson.
At the YMCAs, participants join in 16 weekly classes that teach behavior change strategies around food and exercise, followed by monthly classes. The YMCA receives additional payments if participants reach the goals of a 5-7 percent weight reduction, the level that research has shown can keep a prediabetic person from becoming diabetic. “Five-to-seven percent weight loss leads to fabulous results in preventing conversion [of prediabetics] to diabetes,” said Tom Beauregard. He serves as the executive director of the UnitedHealth Center for Health Reform and Modernization. Beauregard noted that 30 large employers are directing interested employees to the YMCA’s program and said, “We couldn’t do this alone.”
Women tend to gravitate towards in-person classes, several speakers said, while men tend to find them less appealing. For men and for others not able to or inclined to attend classes, an online community and digital tools may work better. Of course, many people will access both types of support.
Varied technologies magnify patient power
Several speakers described sophisticated technological projects underway to empower patients to better care for themselves. One such effort, CollaboRhythm from the MIT Media Lab, has the goal of equipping patients to lead in disease management with help from doctors, health coaches, relatives and friends. Patients have easy access to all relevant data on their own devices and to frequent, detailed advice from coaches. They start out as “apprentices” learning how to manage their own diabetes and advance to become “masters” who can coach other patients.
Television is also becoming involved. Beauregard reported that UnitedHealth’s Center for Health Reform and Modernization worked with Comcast on a research project, called Project Not Me, which involved having participants watch an entertaining, educational reality TV show. The reality program, available to study participants on demand, had 16 episodes that paralleled the experiences of people in the YMCA’s program. The show featured six appealing prediabetic people of different ages, genders and ethnicities, working with a friendly health coach.
“The average participant watched each episode 1.4 times and we know that other relatives watched with them,” said Beauregard. He described the show’s impact as “remarkable,” saying that participants lost weight to a degree that “replicated the weight loss” experienced by participants at brick-and-mortar Ys. “Viewers really relate to the people” on the show, he said, adding that it won an Emmy.
How are you doing with exercising and healthy eating at work, school or home? Take this YCMA quiz here to determine your own diabetes risk.