Diabetes: Delaware’s Billion-dollar crisis

http://www.delmarvanow.com/story/news/2016/04/23/diabetes-delaware-costs-healthcare-insurance-sussex-maryland-prmc-beebe/83430538/

Delaware has a $1 billion time bomb strapped to its back. It’s called Type 2 diabetes.

Today, one in three Delawareans has higher-than-normal blood sugar levels because they can’t efficiently produce and use insulin. Left unchecked, prediabetes and full-blown Type 2 diabetes can disrupt every organ system in the body, leading to blindness, amputated limbs, heart disease, stroke and kidney failure.

Type 2 diabetes, linked to excess weight and a sedentary lifestyle, disproportionately impacts minorities and the poor.

“It’s like a tornado,” said Carrie Holmes, a Dover diabetes educator. “It just keeps getting bigger and bigger.”

After nearly losing a foot to gangrene, Sharon Childress, of Seaford, can’t ignore the signs of a “sugar shake” when her blood sugar levels plummet and convulsions rattle deep in the center of her chest.

Childress developed gestational diabetes when she was pregnant in 1975. More than two decades later, in 1997, she was diagnosed with Type 2 diabetes.

“I really keep an eye on it because I don’t want to lose my eyesight I don’t want to lose my feet,” explained the 59-year-old. “I want to live today. And you can live with diabetes.”

Not only can you live with diabetes; if caught early enough, life-altering changes can be avoided. That’s not the case with most chronic diseases. And it all starts with a simple blood test.

Once diagnosed, patients willing to overhaul their diet and exercise regimens can lower high blood sugar, high cholesterol and high blood pressure. Yet roughly a quarter of those who have diabetes don’t even know they have it.

The average person is diagnosed with Type 2 five to seven years after living with prediabetes, according to Christiana endocrinologist James Lenhard. Some patients experience no symptoms warning them of trouble ahead.

Faced with an aging population and widening waistlines, Delaware spends more on diabetes than either heart disease or cancer. The cost is a staggering $1.1 billion a year — the second-highest health care expenditure behind mental health — for screening, treatment, lost worker productivity and death. The national tab is more than $245 billion, threatening to bankrupt Medicare if current trends continue.

Nearly half of American adults have diabetes or prediabetes, according to a startling study published last year in the Journal of the American Medical Association. And those statistics don’t include the growing number of teens diagnosed with prediabetes, who don’t yet qualify as Type 2 diabetics.

Being overweight is the number one risk factor for youth. Children from African American, Hispanic, Asian and Native American families are twice as likely to develop diabetes as those from Caucasian families.

Delaware deals with diabetes dilemma

Type 2 used to be a disease associated with forty-somethings and retirees, said C.J. Jones, associate executive director for the Delaware Diabetes Coalition.

“In the last 10 to 15 years, the age keeps coming down lower,” she said. “It scares the living daylights out of me.”

The demand for diabetes treatment has spawned a more than $24 billion global insulin industry, with some brands raising their prices by 160 percent over the last five years. Patients, meanwhile, must bankroll a growing list of medications and supplies while negotiating higher insurance premiums and deductibles.

“It’s an insidious disease,” said Marianne Carter, a Delaware State University dietitian. “If it’s not under control, the complications can be devastating.”

Blame an aging population, spiraling obesity rates, behavioral economics, children sequestering themselves indoors to blow up virtual worlds, infrequent blood tests, or the absence of a coordinated outreach campaign.

Or just blame being set in your ways.

Type 1 diabetes is an autoimmune response typically diagnosed in children. But the more prevalent Type 2 is driving the uptick in cases. The nation’s overall diabetes rate has more than doubled over the past two decades in tandem with the obesity rate. Today, diabetes is the seventh-leading cause of death in the U.S.

The News Journal spent months interviewing people on the front lines of diabetes education, including doctors, local and national public health experts, community advocates and nutritionists. We also talked to Delawareans with prediabetes and Type 2 diabetes who radically changed their way of life to stop the disease in its tracks.

National data show that prediabetics who lost 5 to 10 percent of their body weight and exercised regularly lowered their risk of developing Type 2 diabetes by nearly 60 percent. Those who only took medicine lowered their risk by 31 percent.

Yet, in the race to contain an epidemic, prevention is a relatively new area of focus for state and national public health officials. It takes years to test programs to prove their efficacy, along with navigating the complex web of insurers, physicians, advocacy groups, federal regulators and legislators, according to Ann Albright, who heads the Division of Diabetes Translation for the Centers for Disease Control and Prevention.

“If this were a drug, it would already be in people’s hands,” she said.

CHAPTER 2

After an infected hair follicle nearly killed him, Gary Stumpf doubled down on managing his Type 2 diabetes.

The Dover retiree had a family history of the disease, but that didn’t stop him from scarfing down two orders of McDonald’s hash browns for breakfast or a Wendy’s hamburger for lunch.

Diagnosed with Type 2 more than two decades ago, Stumpf’s real complications began with what masqueraded as a nasty flu in 1998.

Doctors advised him to rest for a week. The next day, Stumpf noticed swelling the size of a grapefruit in the scrotum area around his testicles.

He was diagnosed with Fournier’s gangrene, an extremely rare condition caused by an infection in the genital region that destroys the body’s tissues. People with diabetes are at higher risk of contracting the disease, because high blood sugar impedes blood circulation, making it harder for the body to repair sores and wounds.

“In the last 10 to 15 years, the age keeps coming down lower. It scares the living daylights out of me.”

C.J. JONES, DELAWARE DIABETES COALITION

Type 2 diabetes is a chronic, progressive condition that affects the pancreas, an organ roughly the size of a hand. The pancreas makes enzymes that aid digestion and insulin, a hormone that helps the body store or break down sugar, or glucose, from the food we eat and convert it to energy.

Excess weight, eating habits and genetics play a role in how quickly the disease progresses. Being overweight, particularly in the midsection, interferes with the body’s ability to break down glucose in the blood, hamstringing the pancreas.

That’s why many people with diabetes, like Stumpf, must take multiple oral prescriptions and shoot themselves with insulin several times a day to lower their sugar levels.

Dover resident Gary Stumpf points at bananas during a diabetes care program tour at the Dover Acme grocery store on April 9. Stumpf was diagnosed with Type 2 diabetes more than two decades ago.
(Photo: JASON MINTO/THE NEWS JOURNAL)

During his first month in the hospital, Stumpf recalled submitting to 24 major surgeries and laborious, painful cleanings to remove all the dead skin from his gangrene.

“I was given a 10 percent chance to survive,” the 65-year-old remembers. It took him nearly five months to relearn to walk and breathe on his own, followed by three months of in-home nursing care.

Since that time, the former U.S. Department of Defense analyst has faithfully tracked what he eats, and his weight has dropped to 266 pounds from a high of 415 pounds.

With ritualistic precision, Stumpf needle-pricks his middle finger, squeezes a drop onto a plastic matchstick and shoves it into his glucose meter. Bleep. The screen flashed 131 (milligrams per deciliter) on a recent weekday. Normal is 70 to 100.

“I figured it would be high,” Stumpf said, immediately regretting the patty melt he ate for lunch.

Stumpf hiked up his T-shirt and stabbed the right side of his stomach, where his Fournier’s scar, encircling his waist like a belt, cushioned the blow.

Between chuckles, he pledged to eat a very light dinner — perhaps a salad or just five strawberries.

Obstacles multiply

CHAPTER 3

Gary Stumpf of Dover holds his morning diabetes medications pills. Gary has had diabetes for 20 years.
(Photo: JASON MINTO/THE NEWS JOURNAL)

On most days, Christiana endocrinologist Lenhard feels a lot like Chicken Little, issuing doomsday diabetes forecasts to inspire action among his patients. Roughly a quarter of the health system’s beds are filled with diabetes patients.

“It’s a public health threat that could easily cause the bankruptcy of our public payers,” he intones. “Every prediction I’ve ever read about diabetes has been exceeded.”

Lenhard, who directs Christiana Care Health System’s Diabetes and Metabolic Disease Center, has listened to patients give lip service to changing their eating habits with no concrete results.

“That’s the job of the health care professional — to find out what motivates patients,” he said. “The very best diet is the one you stick to.”

Doctors can’t predict with certainty when prediabetes reaches a “point of no return,” Lenhard said.

If nothing is done, most people with prediabetes will develop diabetes within 10 to 20 years, on average, he said. That’s when the beta cells in the pancreas, responsible for producing and secreting insulin, hit a death spiral.

Dr. James Lenhard, a national diabetes expert at Christiana Care.
(Photo: JENNIFER CORBETT/THE NEWS JOURNAL)

Early symptoms of diabetes can be easy to miss. Telltale signs include frequent urination, thirst and hunger, blurry vision, fatigue and numbness in the hands or feet. Fifteen percent of those with Type 2 diabetes aren’t overweight.

Research shows that many primary care doctors don’t talk to their overweight patients about diet and behavior changes. One study found that only 1 in 4 doctors communicate blood sugar abnormalities to their patients.

Time-strapped doctors are accustomed to treating the most pressing symptoms and may overlook diabetes as a risk factor, said Lenhard. The state’s diabetes prevention program trains doctors to look for diabetes warning signs.

Recently, the American Diabetes Association urged a federal task force to adopt broader guidelines for screening patients. The United States Preventive Services Task Force recommends that doctors routinely screen obese and overweight patients ages 40 to 70. Diabetes association leaders want screening to begin at age 20.

The key to changing the tide in Delaware is to hold physicians more accountable, according to Jeffrey Burtaine, a medical director in clinical client relations for Highmark Blue Cross Blue Shield.

“We believe the answer is to put it back on the provider,” he said. Highmark evaluates providers based on positive patient outcomes for blood sugar and blood pressure. Participating doctors also must offer A1C blood tests used to diagnose diabetes and monitor patients’ eyes for deterioration and feet for potential nerve damage.

Some doctors argue that insurance companies and the pharmaceutical industry have stymied their efforts.

Dr. Anita Raghuwanshi, of Beebe Healthcare specializing in endocrinology, diabetes and metabolism, noted that physicians must fight insurance companies for diabetes medication a patient actually needs –– not just what is approved by the insurer. Prescription drug coverage can change within six months, she added, which is frustrating once a doctor finds a regimen that works. Innovative, new medications are also more expensive.

Dr. Anita Raghuwanshi, an endocronolgist with Beebe Healthcare in Lewes, consults with Portia Miller of Lewes about her type 2 diabetes on Monday afternoon. DOUG CURRAN/SPECIAL TO THE NEWS JOURNAL
(Photo: DOUG CURRAN/SPECIAL TO THE NEWS JOURNAL)

Pharmaceutical companies, especially those that manufacture generic diabetes drugs, should be transparent about how much they spend for production versus what they charge the consumer, Raghuwanshi said. Insulin doesn’t come in a generic form because regulatory approvals are so strict, but the cost of other generic diabetic drugs is increasing, she added.

“That’s just pure greed,” Raghuwanshi said. “It’s a huge problem… that we are putting profits above our nation’s well-being – both our financial well-being and the nation’s health.”

Kristin Rogers, an AstraZeneca spokeswoman, said the drug manufacturer prices its medications to “remain competitive, but more importantly so that we can invest in bringing new medicines to market to address unmet patients’ needs.”

Last year, patients saved $617 million through an AstraZeneca program that offers free or reduced medicine to qualifying patients, she said.

Still, patients with Type 2 diabetes spend an average of $6,000 annually visiting specialists, filling prescriptions and stocking up on supplies. That’s 2.3 times higher than the annual health care costs for those who don’t have diabetes.

Stumpf’s bathroom counter is lined with miniature plastic cups, three for each day, 24 pills in all. They treat his blood sugar, cholesterol, stomach acid and more.

One vial of insulin costs him $55 and he needs two over 90 days. Medicare doesn’t cover insulin, insulin pens, syringes, needles, alcohol swabs or gauze unless the use of an insulin pump is deemed “medically necessary.”

Chrissy Nelson, of Seaford, also has piles of supplies. But she occasionally rations her medicine.

Chrissy Nelson, of Seaford, talks about discovering she had diabetes after she had her gallbladder removed in 2007.
(Photo: JASON MINTO/THE NEWS JOURNAL)

Diagnosed with Type 2 diabetes in 2007 after she had her gallbladder removed, the 46-year-old subsists on her $769 monthly disability check, which also supports her unemployed husband. The couple pays $400 a month to rent a room with a mini fridge and microwave in a friend’s house.

A local pharmacy has helped Nelson, a peer center volunteer, cover her co-pays of $30 or more. Some days, she wishes she didn’t have to deal with diabetes. It’s just one more thing to manage.

But after watching both her diabetic parents die before they could settle into retirement, Nelson won’t ignore it.

She sticks to a fixed eating schedule, even if she can’t afford frequent snacks or fresh fruit.

“I’m a stressed person,” she said, softly.

Burtaine, of Highmark, admits that insurers place limits on how much medication and supplies a person with diabetes can purchase. If a doctor authorizes additional blood sugar test strips for a patient, the patient can appeal to increase the coverage allowance, he said.

“The real issue I see in America with diabetes is one of compliance and adherence,” he said. “It’s maddening. You look at this and go, ‘there’s no reason for this.'”

The slow pace of prevention

CHAPTER 4

Health experts seize on prevention programs as the most effective tool in reversing alarming rates of diabetes worldwide. More than 400 million people are diagnosed each year and 1.5 million die from the disease.

“As a country, if we were devoting all our resources to prevention rather than treating after the fact, we would be much healthier and richer,” said Carter of DSU.

But public awareness campaigns have been slow to coalesce.

The American Diabetes Association closed its Delaware office, among others, at the end of 2014 due to funding gaps, according to Jones, who shares a part-time position with one other Delaware Diabetes Coalition staffer. The state contributes less than $30,000 a year to the coalition to pay for operations, an annual wellness expo and distribution of a diabetes resource guide to medical professionals.

For the last three years, Delaware’s diabetes rate has hovered around 11 percent.

Don Post, director of the state Division of Public Health’s Diabetes Program, is hopeful that the state’s diabetes numbers will decline over time. The state program offers free six-session training programs for people with Type 2 diabetes. Roughly 3,000 people have participated in the lessons, which target medication adherence, nutrition, mood and physical activity. About one-quarter of enrollees drop out, which is in line with the national average.

The program falls under a $500,000 annual budget funded by state and federal governments to tackle both diabetes and heart disease prevention.

More needs to be done, Lenhard said: “We haven’t scratched the surface in education.”

He praised England for recently rolling out the world’s first nationwide program aimed at at-risk individuals for Type 2 diabetes. Covering 26 million people, or half of the country’s population, the program will test different prevention models as part of a larger campaign to curb obesity rates.

In the U.S., which doesn’t have single-payer national health insurance, it takes longer to build a prevention infrastructure, enlist all the stakeholders and complete clinical trials to determine the most successful approaches, said Albright of the CDC. Only in the last few years has the nation initiated a conversation about prediabetes.

“We have got to work to get most of the players to the table,” Albright said. “This is an incredibly serious issue in our country.”

The CDC has certified more than 850 diabetes programs. Slightly more than half have reported the number of patients helped, totaling about 40,500 people. Nationally, the CDC estimates that more than 86 million U.S. adults have prediabetes and nearly 30 million live with diabetes.

In recent years, insurance companies, employers, the American Diabetes Association, the national YMCA and the American Medical Association have joined with government health officials in investing in wellness strategies to curb one of the costliest diseases in the U.S.

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(Photo: KAREN OKAMOTO/TNJ)

Highmark, for instance, employs nurse educators who call non-compliant or very sick diabetic patients to discuss their treatment plans; prediabetic patients can access wellness coaches. If employers opt in, Highmark also offers discounts to help workers lower out-of-pocket costs for diabetes and other diseases, Burtaine said.

UnitedHealthcare partnered with the CDC, the AMA and others on a national diabetes prevention campaign that began in 2010. The AMA recently determined that prediabetes and hypertension were critical areas to target improving patient outcomes.

No more mayo sandwiches

CHAPTER 5

Maybelle Diane Delaney is borderline wistful when she describes the white bread-and-mayo sandwiches she inhaled as a kid sitting on her mother’s lap.

Maybelle Diane Delaney
(Photo: BETSY PRICE/THE NEWS JOURNAL)

Until recently, nobody told her how many carbs were in that sandwich. Or in a tomato for that matter.

Diagnosed with Type 2 diabetes more than two decades ago, the quick-witted New Castle resident began the routine of pills and insulin. She had been warned of prediabetes — Type 2 runs in her family — but no one mentioned a food pyramid.

Delaney watched her mother, a Type 2 diabetic, lose one toe after another. Then her entire leg.

Her mother never complained, Delaney remembers, but she also never left the house, feeling too insecure to confront the outside world after losing her sight and hearing.

Type 2 diabetes also claimed Delaney’s older brother, who died of a massive heart attack in 1998. His final words to his sister: “Leave that candy alone.”

A retired bank worker who wears a tight curl in her hair, Delaney found her current Christiana Care specialist, James Hays, in the phone book.

During her first appointment, Hays studied Delaney’s long list of medications. “We’re getting off that,” she remembered him saying. “And we’re getting off that.”

“He was stern,” Delaney said. “He was what I was looking for. Like going to the sergeant.”

Hays ordered a lifestyle makeover for his patient. Delaney, 65, stopped drinking her neighbor’s syrupy lemonade and eating broccoli flavored with a stick of butter.

She got off the breathing machine she used for five years and the twice-daily insulin injections. She lost 50 pounds and she’s down to a single pill, three times a day.

For exercise, she’ll walk the aisles of grocery stores, decrying how a Weight Watchers frozen entree can pack more than 500 mg of sodium.

Delaney cheats, too. With a cupcake. OK, maybe two.

But she finds sustenance in lean meats, frozen vegetables and her doctor’s annoyingly practical advice.

“I listen,” she said, “because I want to live.”

Imagine Delaware: Combating Diabetes

CALL TO ACTION

On Thursday beginning at 5 p.m., The News Journal will host “Combating Diabetes,” an Imagine Delaware event at Cab Calloway School of the Arts in Wilmington, which is serviced by public transportation.

Following a vendor fair featuring preventive strategies and treatment solutions, a panel discussion will begin at 7 p.m. with health leaders from the American Medical Association, Christiana Care and the state Department of Health.

ShopRite will provide diabetic friendly snacks for the event.

“Diabetes is a huge problem in Delaware and getting bigger,” said Susan Leath, president and publisher of The News Journal. “But we can help slow it down if people understand the danger of high blood sugar, and do what they can to monitor it.

“We hope our journalism and Wednesday’s forum, sponsored by Christiana Care, will serve as a call to action for people to become better educated about this debilitating disease.”

Filed under: General Problems