The New York Times recently ran an article regarding the cost of diabetes, causing an outbreak of conversation in the diabetes community. Diabetes Forecast magazine editorial director, Kelly Rawlings, weighs in with her own thoughts:
I like it when an article about diabetes shows up on the front page of a major newspaper.
Diabetes and the nearly 26 million people living with it deserve respect and understanding—and more media coverage. When The New York Times runs an article called “Even Small Medical Advances Can Mean Big Jumps in Bills” and slugs it “Type 1 Diabetes,” it’s a must-read for me.
I hope you’ll read the article, too. The story gets some parts of diabetes so very right—and some parts so very wrong.
Elisabeth Rosenthal writes about the very real personal expenses related to taking care of diabetes, and the constant vigilance it requires. She asks about type 1 diabetes: Do pharmaceutical and device companies make too much profit from diabetes products that people need? Why do we pay so much more in the U.S. than people In other countries pay for medications and supplies? Good questions!
I can’t forgo insulin, insulin delivery devices and the blood glucose test strips that I need to treat my type 1 diabetes. The costs are substantial (although at least I no longer can be denied health insurance coverage because of my pre-existing condition). I depend on the drugs and medical devices that the FDA clears, the companies make, my doctor recommends for my therapy and my health insurance covers.
I would like to trust that companies make a fair profit, one that allows them to maintain quality control, customer service and research and development budgets for innovation. I welcome more transparency from those for-profit businesses. Of course, our fragmented health care and free market systems also contribute to how prices are set. And, as the article states, the U.S. bears the brunt of the research and development costs for new drugs and devices—and pays more for them when they reach the market. Do test strips, for example, really need to cost more than $1 each?
The article implies that ongoing daily care for chronic diseases may be more expensive than hospital or emergency care. We know, however, that managing blood glucose levels on a daily basis greatly reduces the risk of long-term damage to our hearts, kidneys, eyes and limbs—and the very expensive hospital care such complications require. I care about reining in costs and wasteful or ineffective spending, but I think we also need to weight our cost-benefit formulas to favor quality of life.
My employer, the American Diabetes Association, estimated the 2012 costs of diabetes at $245 billion—$176 billion are direct costs and $69 billion are indirect costs. Forty-three percent of the direct costs are from inpatient hospital care—for severe and life-threatening blood glucose emergencies and for the treatment of diabetes-related complications such as heart and kidney damage. Such damage is the result of years of high blood glucose levels, long-time diabetes and other health problems, plus some factors science hasn’t yet untangled. Just 12 percent of total direct costs are from the blood-glucose-lowering medications and diabetes testing supplies we use every day.
The article implies that newer insulins and improvements in insulin delivery and blood glucose monitoring devices aren’t necessary. Yet the Association’s Standards of Medical Care in Diabetes guidelines (based on proven medical evidence) recommend the use of “new” (and yes, more expensive) insulin analogs for people with type 1 to reduce the risk of hypoglycemia. The guidelines also suggest using insulin pumps or multiple daily injections and blood glucose monitoring, based on what’s best for each person.
The article implies that insulin is not “medically necessary” for people with type 2 diabetes. That’s flat-out wrong—and dangerous. The 1 in 4 people with diabetes who use insulin—most of them have type 2 diabetes—would be very sick indeed without various formulations of that wonder drug.
Insulin pumps, help us dose and deliver insulin safely, precisely and consistently. Blood glucose meters and continuous glucose monitors help us know whether blood glucose levels are in the narrow safe zone and provide information that we can use to adjust medications, food choices and physical activity. So many variables. So many daily adjustments. Better, smarter tools help.
The insulin, pump and meter I use today are vastly improved compared to the old-school insulin, syringes and color-changing Clinitest urine glucose tablets my parents and I used to treat my diabetes circa 1973. My blood glucose is at safer, healthier levels. Credit is due to my hard work, to great health care, to research and advocacy efforts supported by volunteer organizations such as the American Diabetes Association and to knowing how to use these improved tools.
Rosenthal unfairly disses manufacturers for making only small, unimportant updates to products and for aggressively marketing the medical devices that the article dismisses as “gadgets.” My insulin pump is a life-sustaining medical device, not just a gadget. Diabetes is the true enemy. Not corporations or the human desire to protect and improve health, to innovate, and to change lives for the better.
I’m an insulin-vial-half-full type of person, however. The New York Times article—despite its flaws—has inspired some important conversations, like this open letter from my friends at DiaTribe. People are talking about how we can work together to ensure that all affected by diabetes can afford to take care of it on an everyday basis at home, work, school, and play—where we’d much rather be instead of in the hospital.
I hope you’ll add to the conversation.
Kelly Rawlings has lived with type 1 diabetes for 41 years. She’s the editorial director of Diabetes Forecast magazine. Her insulin pump is blue; her blood glucose meter beeps but doesn’t talk.