Insulin costs have risen so high that some Long Island patients with diabetes are taking dangerous risks — using less of the hormone than doctors prescribe, reusing syringes or not taking their medication at all, health care providers say.
Patients are coming into hospital emergency rooms sick because they didn’t take enough insulin, or took none at all, with some being admitted to critical care units, according to physicians and others who treat them. Many faced stark economic choices: Their insulin or food. Their insulin or shelter.
“Every patient who takes insulin is complaining about the cost,” said Dr. Robert Courgi, an endocrinologist at Southside Hospital in Bay Shore. “Yes, there is rationing. But what’s more common than rationing is that some patients can’t afford it, so they stop taking it.”
The cost crisis is national in scope.
The American Diabetes Association, noting that insulin prices have risen “steadily and steeply,” has sounded the alarm about potential consequences for patients with Type 1 and Type 2 diabetes. Price tags on all brands nearly tripled from 2002 to 2013, a study last year found.
A price spike of two key insulin products this year is but one example.
In May, the cost of Humalog, by pharmaceutical company Eli Lilly, rose by 7.8 percent to $274 for a 10-milliliter vial, and Novolin by drugmaker Novo Nordisk took a 7.9 percent jump to $275.58 for a vial the same size.
Two class-action lawsuits alleging price collusion were filed earlier this year, one in Massachusetts and the other in New Jersey, against those two companies as well as pharmaceutical giant Sanofi-Aventis. The New Jersey action also names pharmacy benefit managers CVS Health, Express Scripts and OptumRx.
All of the companies have denied the allegations and have said they will mount a vigorous defense.
Engineered insulin was introduced in the early 1980s, but rather than declining in price over time, the medication’s cost has risen despite being on the market so long. Critics cite insulin prices rising in tandem, known as shadow pricing — when one company raises its price, others follow suit.
Pharmaceutical companies defend the price and say it is disingenuous to discuss costs without acknowledging the value these medicines have afforded patients. Improved treatment options have helped dramatically lower the death rate from diabetes, companies say.
Some patients across the country have turned to crowdfunding sites online, hoping to engage the public to help through donations. Prices that ran only a few hundred dollars monthly five years ago now cost some patients anywhere from $700 to $1,000 monthly, depending on insurance plans. Other patients are tapping into foreign drug markets, such as Canada, while still others have sought out risky online black market sources, experts say.
People who have chosen to abandon insulin altogether primarily have Type 2 diabetes, the kind that generally emerges during adulthood. Type 2 diabetics produce some insulin to control blood sugar, but it is an insufficient amount, and because the disease is progressive, millions eventually require daily insulin injections.
Price concerns also deeply affect those with Type 1 — the form of the disease that generally, but not exclusively — starts in childhood and is characterized by lifelong insulin dependence. Type 1 diabetics produce no insulin and need the medication daily throughout life.
Six million people across the country — Type 1 and Type 2 — require insulin. The number includes the entire population of 1.25 million people with Type 1 diabetes. The largest group in need of the medication is the 4.75 million patients with Type 2.
Local doctors are scrambling to help struggling patients.
Some, like Courgi, have given patients insulin samples from pharmaceutical companies. A sympathetic medical staff at NYU Winthrop Hospital in Mineola has started a fund out of their own pockets to pay insulin costs for desperately sick patients. South Nassau Communities Hospital offers intensive counseling on diabetes management and provides supermarket gift cards to help patients purchase healthier foods.
Dr. Joshua Miller, director of diabetes care at Stony Brook University Hospital, said the predicament is worsening as the number of people with the disease climbs.
Eight years ago, 20.6 million people in the United States had diabetes, according to the Centers for Disease Control and Prevention. Now, 29 million have the disease, the CDC says.
Many patients require two forms of insulin — short-acting and long-acting — to control their blood-sugar level, Miller noted. And patients’ rationing of medication is becoming an increasingly common maneuver to try to cope with the expense, he said.
“I continually see patients who try to stretch their prescription with the hope that it will last longer,” said Miller, an assistant professor of medicine and endocrinology at Stony Brook University School of Medicine.
He said patients will take less insulin than prescribed or will skip a dose to save more for later.
Miller not only is an endocrinologist but a patient who has Type 1 diabetes. He believes his unique perspective affords him a deep sense of empathy for those facing challenges. Higher drug costs have affected many patients with good insurance coverage because of higher copays and deductibles, which add to out-of-pocket expenses, he said.
Both Type 1 and Type 2 diabetics face an increased risk of cardiovascular disease, such as heart attacks and strokes when blood glucose — blood sugar — is not controlled. Uncontrolled glucose also assaults the minuscule vessels at the rear of the eyes, leading to blindness. People with diabetes are at elevated risk of kidney disease, nerve damage and foot problems because of poor blood flow to the extremities.
In Port Jefferson Station, Stephanie Ferrari recalled her bout two years ago with uncontrolled blood sugar, which led to a hospital stay. She has Type 2 diabetes.
Ferrari, 38, said she had stopped taking insulin because she couldn’t afford it. Although she knew the medication was important, neither she nor her husband, Mark, a school bus driver, had health insurance at the time.
Her job as a supermarket cashier didn’t offer an affordable plan, she said. As a survivor of ovarian cancer, she was keeping pace with post-cancer medical appointments and medications, and other health concerns went unattended.
“I didn’t know my blood sugar was so high,” Ferrari said.
Then, she cut her foot while on a kayak outing in Yaphank. When the bleeding didn’t stop, her husband recommended she go to Stony Brook University Hospital’s emergency department.
Miller, one of her physicians, was struck by Ferrari’s extraordinarily high blood sugar reading: 630 milligrams of glucose per deciliter of blood. Normal is less than 100 milligrams.
Ferrari, who must take two forms of insulin, now is on Medicaid. Her payment for the two insulin medications is only $6, but she worries about the constant bickering in Washington over health care. She fears losing her insulin again.
Sabrina Gardner, an advocate for diabetes patients, said fear grips people who can’t keep pace with rising insulin costs.
Gardner, who lives in Elmont, does not have diabetes, but her daughter has Type 1, and her mother and several other relatives have Type 2. Earlier this year, a brother-in-law in his early 60s died of a heart attack, a diabetes complication. Cost, she said, had played a role in his ability to manage diabetes.
“I have family members, people I love who have this horrible disease and I don’t want to see them die,” said Gardner, founder of the Diabetes Health and Wellness Academy of New York City. She speaks frequently to groups on Long Island and elsewhere in the greater metropolitan area about diabetes management.
Outside of her family, Gardner worries about people living in the United States illegally, who are undocumented, and are leaving their diabetes unattended because of the dual fears of cost and deportation.
“I have a long history helping people with diabetes,” Gardner said. “I am self-taught and I had to learn because I had to save my daughter’s life.”
Doctors who treat diabetics say price tags on insulin are only part of the problem for those who are feeling the pressure of high costs.
“Diabetes is an expensive disease,” said Courgi, of Southside Hospital. “It’s not just the insulin. These patients need a lot of supplies: test strips, lancets, a [glucose] monitor, insulin and insulin syringes. That’s five different products right there.”
Lucille Hughes, director of diabetes education at South Nassau Communities Hospital in Oceanside, said patients cut corners because other financial obligations take priority.
“Many people will take care of family members and other family needs before they take care of themselves,” said Hughes, who noted that some patients reuse needles to save money.
Type 2 diabetes cuts across a spectrum of populations in the United States. It is most prevalent among the elderly, African-Americans, Latinos and Native Americans.
“There are several stereotypes that have developed around diabetes, and it is very difficult to stomach,” Miller said. “There is a notion that people with Type 2 are lazy and obese. There is a genetic component to the disease for many [Type 2] patients,” he said. “There is also a notion that Type 1 is only a disease of children, which is not true.”
Demographics aside, major diabetes organizations say the cost crisis affects everyone and has been mounting for years.
Dr. Jonathan D. Leffert, president of the American Association of Clinical Endocrinologists, said his organization has long been aware of patients abandoning insulin because of escalating prices.
Like Courgi, Leffert passes out insulin samples from pharmaceutical companies to patients he treats at his practice in Texas. Leffert said he is dismayed by pricing trends.
“From my practice perspective, we give them samples to get them by. Sometimes we get them on one of the programs that the pharmaceutical companies offer, the patient assistance programs,” he said. “We try to work with patients as best we can.”
Brian Malone, director of pharmaceutical services at NYU Winthrop, said the emergence of so-called biosimilars — drugs that are chemically close to current insulin products — can ease the strain on patients’ wallets. He estimates that biosimilars are 20 percent to 40 percent lower in price.
Basaglar, he said, is such a product and is chemically close to Lantus, an insulin product manufactured by the drugmaker Sanofi. In recent years, Lantus has increased in price by more than 185 percent, according to the nonprofit Alliance of Community Health Plans.
In Washington, the American Diabetes Association is pressing forward with a petition started last year to halt high insulin prices. To date, more than 256,350 people have added their signatures to the document, which is posted on the association’s website.
The organization is seeking transparency from key stakeholders in the insulin supply chain: manufacturers, wholesalers, pharmacies and pharmacy benefit managers, said Dr. William Cefalu, the association’s chief scientific and medical officer.
“Most of the people who can’t afford insulin are individuals who are trying their best to make it through life on a small budget,” Cefalu said. “Basic human needs come first, and in some cultures, the person’s health doesn’t come first — family does.”