The doctors say that the out-of-pocket costs for insulin, ranging from $25 to upwards of $600 a month, depending on insurance coverage, are forcing many of their low-income patients to choose between treatment and paying their bills.
“Some of my patients have to make the choice between rent or insulin,” said Dr. Bismruta Misra, an endocrinologist with the Stamford Health Medical Group. “So they spread out taking insulin [injecting it less frequently than a doctor has prescribed] or don’t take it.”
Experts and recent studies point to drug companies’ long-standing patents and the lack of generic or “biosimilar” insulin as key reasons why the drug is so expensive.
A study by Philip Clarke, a professor of health economics at the University of Melbourne in Australia, reported that the price of insulin has tripled from 2002-2013. The findings were published in a research letter in the April 5 issue of the Journal of the American Medical Association.
Studies report that the cost of insulin has risen by triple-digit percentages.
In the United States. Just three pharmaceutical companies hold patents that allow them to manufacture insulin: Eli Lilly, Sanofi and Novo Nordisk. Put together, the three made more than $12 billion in profits in 2014, with insulin accounting for a large portion. All three hiked their prices in the last five years by 168 to 325 percent, says Dr. Kasia Lipska, an endocrinologist at the Yale School of Medicine.
A diabetic needing insulin but unable to buy it “ultimately will hit our emergency room,” said Dr. Cunegundo Vergara, who specializes in internal medicine at Hartford Hospital.
Vergara says “plenty” of low-income diabetics in the Hartford area are living without physician-prescribed insulin.
Similarly, in New Haven, Dr. Anne Camp, an endocrinologist at the Fair Haven Community Health Center, said she has seen “many patients referred to me because their diabetes is out of control, and the major reason is that they can’t afford their insulin. Many other patients are prescribed insulin, and they don’t return for a follow-up, because they are too embarrassed to admit they can’t afford it.”
About 257,000 Connecticut adults (8.9 percent) have been diagnosed with diabetes. Hispanics and African Americans are more than twice as likely to have the disease compared with whites and they are at greater risk of dying from diabetes-related causes, according to the latest data from state Department of Public Health. Diabetes was the seventh leading cause of death in Connecticut in 2013, killing 664 people.
The U.S. Centers for Disease Control and Prevention reports that the number of Americans diagnosed with diabetes increased from 5.5 million in 1980 to 22 million in 2014. Type 2 diabetes is the most common form.
The higher rates of Type 2 diabetes among African Americans and Hispanics “appear to be based on a number of factors, including [differences in] access to healthy foods, physical activity and genetics,” said Dana Marnane, a vice president for public relations at Greenwich Hospital. The hospital reported a 19.5 percent increase in patients discharged with diabetes as a primary or secondary diagnosis in fiscal year 2015, compared with 2014.
Diabetes is a disease in which blood sugar levels are higher than normal. Insulin keeps blood sugar from rising too high. Without insulin for an extended period of time, a diabetic increases the likelihood of heart attack, stroke or death.
Lipska, the Yale endocrinologist, criticized pharmacy benefit managers—who negotiate with drug companies on behalf of employer and government insurance programs—for being more focused on accepting rebates from drug manufacturers than on bargaining for lower drug prices.
To make insulin more affordable, Lipska said, more competition is needed among insulin manufacturers, and biosimilar products must be made available for patients in the United States. There also is a need for better pricing transparency and regulation, she said.
Eli Lilly spokeswoman Julie Williams said she could not disclose the average cost to manufacture, package and distribute insulin to each user, because manufacturing and distribution costs are proprietary. Eli Lilly introduced the world’s first commercial insulin in 1923.
A biosimilar product hasn’t emerged from other manufacturers, she said, “because developing and manufacturing insulin requires billions of dollars in investment, along with deep scientific and technical expertise.”
She said the reason people say insulin is expensive “are complex and go beyond the medicine’s list price,” Williams said. “One of the primary reasons is the advent of new insurance plan designs—particularly the increased use of high-deductible health plans, which shift more of the cost to the individual.”
Many low-income Americans get insulin through Medicaid, and Lilly offers patient- assistance programs that provide free medicine for one year to low-income patients who meet specific financial qualifications. But Williams acknowledged, “Additional solutions are needed so all patients have access to their medicine.”
Novo Nordisk and Sanofi did not return calls seeking comment.
The American Diabetes Association, which represents 441,000 people, says that no diabetic should go without insulin because of “prohibitive costs or accessibility issues.” The association says that “many parties, including pharmacy benefit managers, insurers and retailers are involved in the path of medications” from manufacturer to patient. The ADA advocates “transparency by all parties in their pricing policies and a continued dialogue” to develop lasting, affordable solutions.”
At the Fair Haven clinic, many patients turn to discount retailers, such as Wal-Mart, where a cheaper but older type of insulin is sold, Camp said. But many doctors won’t prescribe it because it often isn’t as effective in managing and treating diabetes, Camp said.
The retail cost for a month’s supply for a typical Fair Haven clinic patient who uses 100 units of insulin daily to treat Type 2 diabetes is about $600 to $800, Camp said. And diabetic patients commonly have other health problems, including high blood pressure and high cholesterol that also require medication and treatment.
“What person making $30,000 a year can lay down $600 a month for insulin?’’ asked Camp, whose clinic treats about 16,000 patients annually, 72 percent Hispanic, 20 percent African American and 80 percent below the federal poverty level.
About 25 percent of the clinic’s patients have no health insurance, and those with private insurance often have “enormous deductibles, such as $4,000 a year,” she said.
Fair Haven participates in the federal 340B program, which requires drug manufacturers to provide outpatient drugs to eligible health care organizations at significantly reduced prices.
“In this country,” Camp said, “we have the potential for really good diabetes treatment. Yet, sadly, because diabetes has become such a high-cost condition, many people can’t get access to it.”
