At first, it seemed like the stomach flu. Weeks before his 24th birthday in May 2015, Alec Raeshawn Smith was overcome by troubling symptoms. His body ached, his stomach hurt and he wasn‚Äôt sleeping well. Laine Lu, a co-worker at his restaurant job, urged him to see a doctor. ‚ÄúThis is not normal,‚ÄĚ she recalls telling him. ‚ÄúGo get checked out.‚ÄĚ His mother, Nicole Smith-Holt, worried too. He called her when he decided to go to a health clinic near Minneapolis. He said, ‚ÄúSeriously, Mom, I think something is really wrong with me.‚ÄĚ
The diagnosis was surprising: Type 1 diabetes. Alec‚Äôs blood sugar levels were nearly twice the healthy limit. His family didn‚Äôt have a history of diabetes, and lanky, 6-foot-3 Alec looked like the picture of health. At 23, he seemed too old for Type 1 diabetes, once known as juvenile diabetes because it often strikes children. But as Alec discovered, Type 1 diabetes is an autoimmune response that can appear at any age. It is not preventable, and there is no known cure.
At the clinic, a nurse practitioner discussed the potential complications of the chronic disease, including blindness, nerve damage, and kidney and heart problems, according to medical records. Alec came home with prescriptions for two kinds of insulin: One was long-acting; the other gave him short bursts before meals. He wrote on Facebook: ‚ÄúToday a lot has changed. ‚Ä¶ I would never wish this upon anybody. So whoever reads this take care of yourself.‚ÄĚ
Even for his older sister, Brittany Smith, who is a nurse, the learning curve about Type 1 diabetes was steep. ‚ÄúI didn‚Äôt really have a handle on it,‚ÄĚ she says. Most of her diabetic patients had the far more common Type 2. Both types involve an imbalance of insulin, a hormone that helps regulate blood glucose levels. For Type 1 diabetics, the body produces little to no insulin. In Type 2, generally, the body has become resistant to insulin‚Äôs effects. Not all Type 2 diabetics take insulin, but all Type 1 diabetics do. Alec would need a steady supply for the rest of his life.
What had been a carefree 20-something existence was now dominated by insulin injections, timing of doses and taking a blood sample four times a day to measure glucose levels. ‚ÄúI know he‚Äôd get frustrated,‚ÄĚ Nicole says. Within three months, though, Alec had gotten his blood sugar under control. He maintained healthy levels as that first year wore on. He began dating Laine and worked as a manager at the restaurant where they‚Äôd met. Eventually, he moved out of his parents‚Äô home and into his own apartment on a tree-lined street near downtown Minneapolis.
In 2017, as his 26th birthday neared, his mother had a new worry: He would no longer be covered by her health insurance through her job in the financial aid department of a community college. Nicole paid about $100 per biweekly paycheck for a family plan, and it had not cost extra to include Alec. With it, she says, he initially had been paying about $200 to $300 a month out-of-pocket for his diabetic supplies and prescriptions, an amount he could just afford. The restaurant did not offer insurance, and his $35,000 salary put him above the income limit for Medicaid in Minnesota.
His mother helped him look for a health plan on the marketplace set up by the Affordable Care Act, but his options were expensive. To keep going to the same doctors, she says, he was looking at paying about $450 monthly, in addition to a high deductible of more than $7,000, which would mean months of paying out-of-pocket for most of his medical care. He opted to go without insurance, forgoing that expense to focus on paying for his insulin and supplies until he could find a better option.
What Alec soon learned was just how much his insulin would end up costing: more than $1,000 a month. The price of insulin ‚ÄĒ once modest ‚ÄĒ has skyrocketed in recent years, making the lifesaving medication a significant, even burdensome, expense, especially for the uninsured and underinsured. The costs are so heavy that they have driven some patients to ration their supplies of the drug in a dangerous gamble with life-threatening consequences.
At the time Alec discussed skipping insurance coverage, he told his mother, ‚ÄúIt can‚Äôt be that bad.‚ÄĚ Within a month of going off her policy, he would be dead.
Insulin, in its various manufactured forms, has been used to treat diabetes for almost a century, since Canadian researchers isolated the hormone in a lab in 1921. Before their discovery, what we now know as Type 1 diabetes was fatal. Even after being put on starvation diets, patients often lived no more than a few years. The researchers who transformed diabetes treatment won the Nobel Prize, and they sold their patent to the University of Toronto for a total of $3. ‚ÄúAbove all, these were discoverers who were trying to do a great humanitarian thing, and they hoped their discovery was a kind of gift to humanity,‚ÄĚ historian Michael Bliss told The Washington Post in 2016.
Soon, though, insulin became a commercial enterprise. By 1923, the American pharmaceutical company Eli Lilly was manufacturing enough insulin for diabetics across North America. For decades, manufacturers improved formulas, first using animal parts, then producing human insulin using bacteria and recombinant DNA. The 1990s saw the advent of insulin analogs, synthetic drugs made to better mimic the body‚Äôs own insulin production.
Today, critics argue that the price of insulin has far outpaced any innovations. In the past decade alone, U.S. insulin list prices have tripled, according to an analysis of data from IBM Watson Health. In 1996, when Eli Lilly debuted its Humalog brand of insulin, the list price of a 10-milliliter vial was $21. The price of the same vial is now $275. Those costs can be compounded by the multiple vials that diabetics may require to survive each month. ‚ÄúIt‚Äôs a very big problem,‚ÄĚ says Robert Gabbay, chief medical officer at the Joslin Diabetes Center in Boston. ‚ÄúIt‚Äôs a tragic barrier to care.‚ÄĚ
The¬†global insulin market is dominated by three companies: Eli Lilly, the French company Sanofi and the Danish firm Novo Nordisk. All three have raised list prices to similar levels. According to IBM Watson Health data, Sanofi‚Äôs popular insulin brand Lantus was $35 a vial when it was introduced in 2001; it‚Äôs now $270. Novo Nordisk‚Äôs Novolog was priced at $40 in 2001, and as of July 2018, it‚Äôs $289.
In Washington, the soaring price of insulin has provoked bipartisan concern. Members of Congress are trying to parse the factors that have caused the spike. In November, a congressional caucus released a report on insulin, urging legislation aimed at lowering prices through increased competition and pricing transparency, among other recommendations. In June, the American Medical Association called on the government ‚Äúto monitor insulin pricing and market competition and take enforcement actions as appropriate.‚ÄĚ Insulin, in some ways, serves as a proxy for the rising prices across the U.S. prescription drug market. On the campaign trail in 2016, Donald Trump railed against high drug prices, and his administration has vowed to lower them, releasing a flurry of proposals in the past year.
In the meantime, a portion of the more than 7‚ÄČmillion diabetic Americans who take insulin are stuck with debilitating costs. Though most don‚Äôt pay the full list price for insulin because of insurance coverage and other rebates, some do, especially those who are uninsured, underinsured or facing a coverage gap through Medicare. ‚ÄúThe most vulnerable patients are subsidizing the system,‚ÄĚ William Cefalu, the chief scientific, medical and mission officer of the American Diabetes Association, told a Senate committee in May.
At the same hearing, a father from Maine told senators that a 90-day prescription for just one of his son‚Äôs insulins would cost him $1,489.46. That‚Äôs with his high-deductible insurance. He testified that he has taken to buying the same three-month supply from a Canadian pharmacy for about $300 plus $50 in shipping. (It‚Äôs technically illegal to import medication from other countries, but the Food and Drug Administration generally doesn‚Äôt prosecute individuals if it‚Äôs a short-term supply for personal use.) He is not alone in his dilemma: The website GoFundMe has thousands of posts with people pleading for help to pay for insulin.
Patients who struggle to afford insulin sometimes ration their supply to make it last longer ‚ÄĒ a dangerous practice that can create disabling or deadly complications. ‚ÄúIt‚Äôs very shortsighted to skimp on insulin,‚ÄĚ says Kasia Lipska, an endocrinologist and diabetes researcher at Yale School of Medicine. ‚ÄúIn the long term, it‚Äôs going to cost us much more.‚ÄĚ Poor glycemic control can lead to blindness, kidney failure, amputation, heart disease and stroke. In the short term, patients who stop taking enough insulin can lapse into diabetic ketoacidosis, a condition where blood sugars get too high and the body‚Äôs blood becomes acidic. It can become fatal in just hours or a few days.
At the Yale Diabetes Center, Lipska and her colleagues recently found that one in four diabetic patients reported rationing insulin because of the cost. Very few of those patients were uninsured, but their out-of-pocket expenses still created a financial burden. These patients were also, not surprisingly, almost three times as likely to have poor blood sugar control as patients who didn‚Äôt underuse insulin.
Did Alec die because he was rationing? The answer may never be absolutely clear, but his family is convinced that he was skimping on his doses. He never told his loved ones that he was rationing because of the expense, but they knew that the disease and its cost wore on him. He had talked to his parents about searching for jobs that offered health insurance. Laine had scouted the Internet for prescription discounts. Alec vented to his best friend, Erick Borrome, whose wife, Arizbeth, offered to get him cheap insulin from a pharmacy in Mexico, where she had family and a vial cost roughly $50. She says: ‚ÄúWe had many conversations about the insulin and the cost. He was pretty worried about it.‚ÄĚ But, she adds, ‚Äúhe was too shy to accept help.‚ÄĚ He never took her up on the offer.
Nicole got the call that Alec had died on a Tuesday. It was Laine who found him. She hadn‚Äôt heard from him since Sunday night, so she went to his apartment to check on him. He was on the floor beside his bed. ‚ÄúI grabbed his shoulder, and it was ice cold,‚ÄĚ Laine says. ‚ÄúI just knew he was gone.‚ÄĚ
Alec‚Äôs funeral was held the day after the Fourth of July, his favorite holiday. Family and friends gathered at his parents‚Äô house in Richfield, a Minneapolis suburb, to shoot off fireworks in his memory. Those first few weeks were a blur, as Nicole tried in her grief to piece together the last days of Alec‚Äôs life. The medical examiner had listed diabetic ketoacidosis (DKA) as the cause of death. By definition, he had died of a lack of insulin, but why and how did that happen?
In speaking with Laine, Nicole learned that Alec had indicated he was running low on insulin before he died. That Sunday, Laine had suggested they go to a food truck festival, but she remembered Alec saying, ‚ÄúNo, I don‚Äôt think I have enough insulin for that.‚ÄĚ That night, he was tired and complaining about abdominal pains. Hearing this, Nicole deduced that those symptoms may have been warning signs of DKA.
There were more clues: There was some healthy food in his fridge, but no stockpile of insulin. As Nicole cleaned out his cluttered blue car, littered with old prescription receipts, she started to cobble together just how much his insulin and blood sugar testing supplies cost without insurance or discounts. The total, by her count, was nearly $1,300 per month. That was roughly the same amount that Alec‚Äôs local pharmacy tallied for me nearly a year later, using a list of his medications and medical supplies. ‚ÄúIt‚Äôs very expensive to be diabetic without insurance,‚ÄĚ the pharmacist said. That $1,300 was almost $200 more than Alec‚Äôs biweekly paycheck.
Nicole now believes that Alec was rationing his insulin because of the cost. ‚ÄúBased upon what he had left when he was found, we came to the conclusion that he had not filled his prescription, so he had to have been rationing for a short period of time,‚ÄĚ Nicole told me. ‚ÄúWe realized that he had been taking less insulin and less often than he should, trying to make it stretch until he got his next paycheck.‚ÄĚ He was found dead three days before payday.
No one can truly know what happened in those final days. Alec may not have realized that his condition was so serious, or perhaps he thought he would be fine, just as he had been when he was diagnosed. DKA creates confusion as it progresses, and it can progress quickly, shutting down vital organs.
‚ÄúIf I could go back in time,‚ÄĚ Nicole says, ‚ÄúI would have found a way for him to not move out ‚Ä¶ so I could monitor this or see that he was struggling in some kind of way, and force him to take our help.‚ÄĚ One afternoon, sitting at their dining room table, her husband, James Holt, recalled encouraging Alec to get his own place. ‚ÄúI think back and regret that,‚ÄĚ he said, wiping away tears.
In their search for answers, there was enough blame to go around. His family blamed the broken health-care system. They blamed unaffordable insurance and high out-of-pocket costs. They blamed a lot of things, including, in darker moments, themselves. But they kept coming back to the price of insulin. Why was a treatment that had been around for nearly 100 years so expensive? And what could be done about it?
Nicole hadn‚Äôt known much about the world of diabetes advocacy before Alec died. But now she felt a budding activism as she encountered a flood of information and stories like her own online.
Advocates were rallying around the hashtag #insulin4all, which the nonprofit organization T1International helped create in 2014 to raise awareness about the inaccessibility of insulin, particularly in developing countries. T1International‚Äôs founder, Elizabeth Pfiester, an American Type 1 diabetic who now lives in the United Kingdom, still marvels at how much more affordable diabetes care is in her adopted country. ‚ÄúIt‚Äôs really a shame that #insulin4all is needed as a rallying cry in the U.S.,‚ÄĚ she says.
There are T1International activists like Hattie Saltzman, a college student in Missouri who went a year without buying insulin because she couldn‚Äôt afford her monthly $550 insulin bill. Her father shared some of his insulin, and she got free samples from her doctor. At one point, she told me, ‚ÄúI had rationed insulin so extensively that it expired. I didn‚Äôt catch that until I went to the ER because my blood sugars were through the roof.‚ÄĚ When the diabetic daughter of family friends died of cystic fibrosis, the family donated her leftover insulin to Saltzman. That got her through the year until she qualified for better insurance coverage.
There are new cases all the time. In July, Long Island resident Doreen Rudolph tweeted about her young adult daughter‚Äôs struggle to afford insulin: ‚ÄúI just bought 2 vials of insulin for my daughter cost me $524. With a discount card. All I could buy. I left the pharmacy and sat in my car and cried.‚ÄĚ Her message struck a chord: Within five days, her tweet had been liked 70,000 times, and her $8,000 GoFundMe campaign was fully funded. To buy insulin, Rudolph told me, ‚ÄúWe‚Äôve taken out loans. We‚Äôve borrowed from retirement. You think, ‚ÄėWhere else can I get it?‚Äô‚ÄČ‚ÄĚ
A pharmacist and a number of physicians told me about older insulins available from Walmart. The type of insulin first came out in the 1980s and now costs about $25 per vial. So-called ‚ÄúWalmart insulin‚ÄĚ is a controversial solution for Type 1 diabetics, many of whom believe that older formulas are more likely to lead to dangerously low blood sugar levels. A few doctors echoed that concern. Yet it could still save lives. ‚ÄúIt‚Äôs very good insulin,‚ÄĚ one physician told me. Another said, ‚ÄúIt‚Äôs obviously better than nothing.‚ÄĚ Researchers have found that these older insulins work just as well for Type 2 diabetics as pricier analog insulins, but some research shows a slightly better outcome for Type 1 diabetics on newer formulas.
Many diabetics continue to hunt for coupons and discounts on high-priced insulins. Some doctors will give out samples to struggling patients. The constant search for more insulin can become all-consuming. ‚ÄúI think about it when I wake up. I think about it when I go to bed,‚ÄĚ says Michelle Fenner, an #insulin4all activist whose diabetic son is 17. She worries about what will happen when he is a young adult and on his own. ‚ÄúThere is no way he can pay what I do,‚ÄĚ she says.
Eli Lilly, which hasn‚Äôt raised its insulin prices since May 2017, declines to discuss its pricing strategies in general. Asked for comment, it offered a statement: ‚ÄúSome people pay too much for insulin at the pharmacy, and there are several reasons ‚ÄĒ including high deductible insurance plans that require people to pay thousands of dollars in medical bills before coverage is triggered. We‚Äôre focused on finding solutions to the problem.‚ÄĚ
In August, the company started the Lilly Diabetes Solution Center, a help line to ‚Äúassist people who need help paying for their insulin.‚ÄĚ Fenner said a coupon she received from the help line dropped the monthly cost of one of her son‚Äôs insulins from $900 to $95. It‚Äôs an incredible boon, but she already worries how long Eli Lilly will keep the savings going. According to the American Diabetes Association, these kinds of measures are just a stopgap: The organization‚Äôs June 2018 report concluded that corporate patient assistance programs are ‚Äúnot deemed to be a long-term or comprehensive answer to the rising cost of insulin for the vast majority of people with diabetes.‚ÄĚ Several people, including Fenner, described insulin as being like oxygen: Scavenging for it invokes a primal fear, like the gasp you make just before you run out of air.