Mike Lawson will never forget how he ended up in the hospital 12 years ago when he had to decide between making a $300 car payment or buying insulin.
āI made a stupid choice,ā said Lawson, an Oakland resident who has Type 1 diabetes. āThat month I chose to pay for my car payment and to ration insulin.ā
These days, the price of insulin skyrocketing, and he is stockpiling the drug. Through Twitter, Lawson recently connected with a stranger who said she had four leftover bottles after switching brands. The two exchanged messages and met near her San Francisco office.
Letting insulin go to waste āis almost like tossing gold,ā Lawson said.
The price of three commonly used insulin products has increased substantially in recent years. From 2013 to 2019, the cost of NovoLog nearly doubled, going from $289 to $540 per carton, according to according to letters sent in February to drug manufacturers by the Senate Finance Committee, which is investigating insulin prices. Another common drug, Lantus, rose in price from $244 to $431, the committee said. (The drugās maker, Sanofi, says the numbers rose from $228 to $425 over that time period, but the amount paid to the company actually fell 25% after Sanofi paid rebates to insurers and pharmacy benefit managers.)
A vial of Humalog, a third popular insulin drug, cost $35 in 2001 and by 2015 had risen to $234, according to the Senate committee.
And so, worried about cost, diabetics such as Lawson are increasingly seeking new ways to get, give away or exchange insulin cheaply or for free. Some are using unofficial channels on the internet. Others are traveling to Mexico, where pharmacies sell some popular types of insulin for a fraction of their cost in the United States.
Lawson, who now is able to get insulin for a moderate price through insurance even though he still seeks out extra, has also given away some of his insulin to local strangers in need, who find him through Twitter by searching hashtags like #T1D (Type 1 diabetes) and #insulin4all.
For the roughly 1.5 million Americans with Type 1 diabetes, the amount of money patients spent on insulin nearly doubled from 2012 to 2016, from $240 to $475 a month, according to a January report from the Health Care Cost Institute, a nonprofit that analyzes health care data. And spending in 2017 continued to rise, experts said.
āThe risk isnāt only that people are being trapped in debt,ā Rep. Ro Khanna, D-Fremont, tweeted last weekend. āAmericans have actually died from diabetic ketoacidosis because they had to ration or skip their doses. We need to rein in Big Pharma greed to save lives.ā
The price of insulin has doubled over the past five years and the risk isnāt only that people are being trapped in debt.
Americans have actually died from diabetic ketoacidosis because they had to ration or skip their doses.
We need to rein in Big Pharma greed to save lives.
ā Ro Khanna (@RoKhanna) April 21, 2019
Many stories have emerged nationwide about people who, like Lawson, rationed or delayed buying insulin because they could not afford it, often leading to deadly and dangerous results. About 1 in 4 diabetes patients uses less insulin than prescribed because of costs, according to a 2018 Yale University study.
āItās not just anecdotal, this is relatively widespread,ā said the study co-author Dr. Kasia Lipska, an endocrinologist at Yale School of Medicine. āThere are lots of patients having difficulty affording their insulin.ā
But why is insulin, which is naturally produced by the pancreas and first discovered for medical use nearly a century ago, so expensive?
The scientists who invented it in 1923 sold the patent for $1 to the University of Toronto for the purpose of making it accessible. But the way the drug is produced and delivered to the body has changed significantly since then. Insulin was initially isolated from animal pancreases, but today it is made by inserting the human insulin gene into bacteria, producing the insulin protein, and then purifying it. Insulin is derived from live organisms and put through a complex process to become a medicine ā so itās hard for a competing drug company to make a generic version of it. A handful of drug manufacturers have essentially patented the processes for creating modern-day insulin products just enough to keep exclusive patents under their name, experts said.
Only three drug companies sell insulin in the United States: Eli Lilly, Sanofi and Novo Nordisk.
āSome of the insulins have dozens of patents on them even though the active ingredient patent has expired,ā said Jeannie Biniek, a health economist who co-wrote the Health Care Cost Institute report. āThereās a question of whether these additional patents are providing a justified return on the investment or, if at some point, they are just providing the company the opportunity to maintain a monopoly on the market.ā
And, as is the case with many prescription drugs, itās not clear how the ālist priceā of insulin ā what a patient would have to pay out of pocket for it, if they do not have insurance ā is determined because negotiations between drug companies, insurers and pharmacy benefit managers about who pays what are considered proprietary. Drug companies say lowering the list price wouldnāt necessarily lead to lower costs for consumers because part of the list price gets paid to pharmacy benefit managers.
In recent weeks, amid growing pressure from Congress, the drug companies and some insurers have announced plans to make insulin more affordable. But they fall short of many consumersā expectations.
Eli Lilly, which makes Humalog, announced in March it will offer a half-price version of the popular fast-acting insulin for $137 per vial, but has not said when it will be available. A Lilly spokesman said the company also offers a free hotline that consumers can call for information about out-of-pocket reductions at the pharmacy and clinics where donated insulin is available.
In April, hours before Sanofi executives were set to testify before a congressional committee on rising insulin prices, the company announced it will sell its insulin products for a fixed price of $99 a month, for up to 10 vials or boxes of insulin pens, to patients paying with cash. Patients who have commercial health insurance are eligible for co-pay cards that may lower their out-of-pocket expenses, a Sanofi spokesman said. Last year, 246,000 people used the co-pay cards and paid nothing or $10 a month for their Sanofi insulin, he said. Sanofi also provides free insulin for low-income uninsured patients who make about $30,000 a year or less.
Novo Nordisk has provided free insulin to tens of thousands of uninsured people with diabetes since 2003 and spends $200 million each year on co-pay assistance to patients with commercial health plans.
āWe know how challenging it is for a growing number of Americans with diabetes to afford their medicines, including the ones we make,ā a Novo Nordisk spokesman said. āAs a company focused on improving the lives of people with diabetes, this is not acceptable.ā
Cigna and Express Scripts, which recently merged, announced that they would cap out-of-pocket spending on insulin at $25 a month for patients whose pharmacy plans are managed by Express Scripts. Up to 700,000 people who are on employer-sponsored plans are eligible to receive this benefit if their employer decides to opt in.
āIām glad to see the mounting pressure and public outcry are having an impact in Lilly releasing this generic and Cigna capping spending, but thatās not enough,ā said Lipska, of Yale. āThose are Band-Aid solutions that donāt resolve the underlying issue of very high prices for these insulins.ā
Indeed, the discount and savings programs arenāt reaching everyone.
Sabella Larkin of San Diego said she has had to buy insulin in Mexico three times ā once in Tijuana and twice in Rosarito. The first time was several years ago, when she was a college student in Texas, while working full time at a tanning salon and struggling to pay her bills. Her insurance at the time wouldnāt cover an insulin refill until a certain date, and she couldnāt wait. One of her customers at the salon lent her $200 to buy an insulin pen.
āTwo weeks later when I got paid, I tried to reimburse her and she said no,ā said Larkin, 28. āBeing in that situation, thatās when I went to Mexico and happened to see the insulin I take. It was only $20. I literally cried.ā
Larkin said she has purchased both NovoLog and Lantus in Mexico for $20 to $25, for the same amount of insulin that would have cost her hundreds of dollars at U.S. pharmacies.
āIt was life changing,ā she said. āIt was this added security across the border.ā