When Megan Blair was in college, she did an experiment of sorts on how much insulin a diabetic needs. It wasn’t part of a class – it was her life. She was trying different dosages out of necessity.
“How much insulin could get me through the day? If I don’t give myself all the insulin I need in one day, I would have leftovers for the next day and maybe I could learn how to turn 30 days’ supply into 60 days’ supply,” she said at a news conference in Peoria, Illinois last fall. “Well, this worked for a little bit, until my body couldn’t keep functioning...trying to ration the insulin I did have. I ended up in the hospital several times.”
According to an article in the American Medical Journal, Blair isn’t alone. About one in four diabetics rations their insulin because it’s too expensive.
Blair, who lives in Harristown, was speaking in favor of now-passed legislation in Illinois that will cap the out-of-pocket cost for the insulin diabetics need to survive. The Illinois General Assembly in early December sent Gov. J.B. Pritzker (D) legislation limiting the out-of-pocket price that state-regulated health plans can charge for insulin to $100 for a 30-day supply starting in 2021, becoming the second state to pass such a limit.
The bill mirrored one passed in Colorado, which on Jan. 1 became the first state to cap skyrocketing insulin costs. But only certain Colorado insurance plan patients – likely about 6,000 – will benefit from the state’s new law. The Illinois bill also is limited, only applying to the 20 percent or so of diabetics there with state regulated, as opposed to federally regulated, insurance. State workers will benefit, for example, but most people with employer-sponsored health plans, and those on Medicaid or Medicare, won’t.
That is extremely troubling given that more than 30 million Americans currently have diabetes and nearly half of all American adults have prediabetes, according to the American Diabetes Association.
The most used types of insulin - almost all of which are produced by just three companies - now cost ten times more in the U.S. than in other developed countries. In 2016, patients with type 1 diabetes spent $5,705 per-person on insulin, according to the Health Care Cost Institute.
The two increases – in the need for insulin as diabetes ravages more of the population, and in its price – have in recent years made this one of the biggest issues facing health care policy makers at the state and federal level. And without a fix, patients will die, wrote Mayo Clinic physician S. Vincent Rajkumar this past week in Mayo Clinic Proceedings.
In fact, they already are dying.
Rajkumar points to the story of Alec Smith, a 26-year-old Richfield, Minn. restaurant manager who aged off his mother’s insurance policy in 2017 but decided he couldn’t afford health insurance and was paying out of pocket for insulin. Also unable to afford that, he began rationing it. He died of ketoacidosis, the result of an insulin deficiency.
Several families have told their own stories about loved ones who were skimping on insulin or using cheaper versions of the drug and died because of it. GoFundMe has several fundraisers for people trying to afford the drug.
“The high prevalence of diabetes, the chronic lifelong nature of the disease, and the fact that patients with type 1 diabetes will die without access to insulin, make this an urgent problem that must be solved expeditiously,” Rajkumar wrote.
While states, the federal government, insurers and the drug companies themselves are all starting to feel the pressure from an ever-increasing number of Americans struggling to pay for life-saving insulin, the state-by-state pace of trying to find a solution won’t likely be considered expeditious by many patients.
Bills aimed at reducing the cost have been filed in several states, including in Washington, where a bill proposed by Sen. Karen Keiser (D), SB 6087, mirrors the Colorado and Illinois measures with a $100 per month cap. In Virginia, lawmakers may consider an even lower $30 monthly cap.
The bills started being filed a couple of years ago, but some state efforts have stalled in the face of opposition from the pharmaceutical industry or wrangling over details about how to work out a plan to save patients money.
That’s the case in Minnesota, the state where the issue is currently among the most heavily discussed topics, and where Alec Smith’s mother has pushed for legislation since not long after his death. Insulin price relief was a high profile, heavily debated issue last year, but no agreement was reached.
Lawmakers then pushed for a special session on the topic, which also never emerged. A special interim committee is trying to work out a plan in hopes of putting it before lawmakers when they convene next month. There, a program to help provide cheap or free insulin to some patients, rather than just a cap on out-of-pocket costs, is under consideration.
But the Minneapolis Star-Tribune reported last month that progress has been hindered by disagreement about whether to have drug makers fund an emergency insulin program by paying a fee, or just provide it for free, and other details about how to get lower-cost insulin to patients.
Smith’s mother, Nicole Smith-Holt, who has become a prominent activist on the issue, and others, blame the three companies that make most of the insulin: Eli Lilly, French company Sanofi, and Novo Nordisk of Denmark.
“The three companies that control most of the world's insulin market know they can effectively charge whatever they want since every single type 1 diabetic has no choice. If they want to live, they have to find a way to pay.” Smith-Holt wrote last month in an editorial in USA Today.
All three companies have been accused in a New Jersey class action lawsuit filed by a group of diabetics of artificially inflating insulin prices. Attorneys General in Minnesota and Kentucky have also filed suit, with further legal action reportedly being pondered in Pennsylvania.
The Senate sponsor of Illinois’ legislation also blames the drug industry for unfairly inflating the price of the drug.
“Our state will no longer allow pharmaceutical companies to take advantage of Illinoisans living with diabetes by charging exorbitant prices for lifesaving insulin medication,” Sen. Andy Manar (D) of the downstate Illinois town of Bunker Hill, said after the legislation passed in Springfield. The Illinois bill is awaiting Pritzker’s expected signature.
Another state is taking an even bolder approach. California Gov. Gavin Newsom (D) announced a plan last week to make the Golden State the first to manufacture and sell its own brand of generic prescription drugs. That would create a single market for drug pricing in California, and would require drug companies to bid to sell their medicine at a uniform price. The idea is to bring down prices on all prescription medications, but health advocates noted the particular impact such a plan would have on patients who need insulin.
“Consumers would directly benefit if California contracted on its own to manufacture much-needed generic medications like insulin — a drug that has been around for a century yet the price has gone up over tenfold in the last few decades,” Anthony Wright, executive director of Health Access California, told the Associated Press.
For their part, drug makers acknowledge that the drugs cost too much, but blame insurance companies and middlemen for not passing on savings.
“Prices for insulin after discounts and rebates have fallen in recent years,” industry group PhRMA said in a statement last year. “But too often, these negotiated discounts and rebates are not shared with patients, resulting in patients with diabetes paying higher out-of-pocket costs for their insulin than their insurer pays.”
The industry has called for changes that it says would reduce costs, including changing the discount system in Medicare Part D, and allowing high deductible insurance plans to cover insulin outside of the deductible, among other ideas.
Under pressure, the drug companies and insurers have started to put forth efforts to help as well. Eli Lilly last year announced a new generic version of its insulin with a list price half off the standard version. Cigna’s Pharmacy Benefits Manager, Express Scripts, moved on its own to cap insulin prices at $25 for a month’s supply, instead of more than $40. Health insurer Medica recently put a similar $25 cap in place for its Minnesota customers. And last week, Novo Nordisk announced it would be offering one-time donations of insulin to people “in immediate need,” as well as cheaper versions of its main drug, Novolog.
Patients also got a little bit of good news last month when Congress passed a $1.3 trillion spending bill to avert a government shutdown. Tucked into that measure was a bipartisan provision aimed at allowing generic forms of insulin currently undergoing FDA approval to continue that process, making it likely they’ll come to the market sooner.
That might help lower the cost of all insulin, Republican U.S. Rep. Brett Guthrie of Kentucky told the Owensboro Messenger-Inquirer.
State lawmakers, though, continue to hear from advocates who note that rebates and caps put in place so far cover only a small portion of those who depend on insulin.
“The copays have risen as the costs have risen,” Keiser, the sponsor of the bill in Washington State said in an interview on Seattle’s KOMO TV. “And we need to put a lid on it...Everybody knows this is a problem. The question is do we have the will to act.”
-- By SNCJ Correspondent Dave Royse
States Consider Caps on Insurance Copays for Insulin
At least 14 states have introduced or prefiled legislation in the 2019-20 session that would limit the amount insureds have to pay for covered prescription insulin drugs. Lawmakers in one of those states, Illinois, sent an insulin copay cap (SB 667) to Gov. J.B. Pritzker (D) in December. Last year Colorado became the first state to enact such a limit (HB 1216).
Source: LexisNexis State Net