Deidre Waxman needed a three-month supply of insulin, and she didn’t have it. As novel coronavirus spread, the 67-year-old began to panic. She’s lived with late-onset Type 1 diabetes for eight years, and she knew she needed to stock up on her life-saving medicine in case of an emergency — like a pandemic. But this had proved difficult. Like many people with diabetes, Waxman needs two kinds of insulin to survive. She had successfully stocked long-acting insulin, but she needs short-acting insulin, too, and it eluded her. Medicare, she told Intelligencer on Tuesday, is strict about the amount of prescription medication a person can fill at once.
Then, a breakthrough. “The universe sometimes provides,” she said. Her friend Chris, who also has diabetes, called her “out of the blue,” she said. He had some extra insulin. Did she want it? The two met at a park in Cambridge, Massachusetts, to make the exchange. Waxman had her emergency supply at last. “I felt a lot better,” she said. “I knew then, you know, that I was cool. I had enough in an emergency, in a crisis.”
Waxman is at the mercy of two colliding forces. The outbreak of the novel coronavirus, or COVID-19, inflicts new stress on a health-care system already pushed to the brink. To many people with chronic illnesses, including diabetes, the U.S. was already a nation in crisis long before COVID-19 reached home soil.
The plight of diabetes patients in particular illustrates long-running problems with the American approach to health care. Rising insulin prices have deadly consequences, and over the last several years, several high-profile deaths associated with insulin rationing have helped force the issue into public view. Lawmakers in Minnesota are nearing agreement on a bill that would establish a statewide affordability program for people who need emergency insulin; it is named for Alec Smith, who died of diabetic ketoacidosis after he could no longer afford the medication. In Virginia, lawmakers are close to passing a bill that would cap insulin costs at $50 a month. Senator Bernie Sanders has also used his presidential campaign to highlight the issue. In 2019, he accompanied people with diabetes on a caravan trip to Canada, where they purchased affordable insulin, and released several videos focused on Smith and Shane Boyle, who died from insulin rationing in 2017.
COVID-19 could now make a bad situation worse. Though the virus is new and research is in the early stages, preliminary evidence suggests that people with poorly controlled diabetes may be at a higher risk for complications. “As far as we know, it’s not having diabetes itself that greatly increases your risk for poor outcomes. It’s having diabetes and having poorly controlled diabetes, or already having some of the complications, like heart disease, that often accompany diabetes,” explained Matt Petersen, who directs the American Diabetes Association’s Medical Information Department. A person’s age also increases their risk. A 20-year-old with controlled Type 1 diabetes, Petersen said, can probably expect a good outcome. Patients closer to Waxman’s age have more reason to worry.
The ADA encourages patients to keep at least a one-month supply on hand, a recommendation Petersen believes that most are able to follow. Public pressure has also forced insulin manufacturers like Eli Lilly to introduce affordability programs, which put the medicine within reach for some patients on the brink. But these programs don’t resolve the broader issue, which is essentially one of monopoly power. Three manufacturers, including Eli Lilly, control the market for insulin, and have the freedom to raise prices as high as they please. Even with manufacturer affordability programs in place, insulin remains too expensive for some to afford. A survey released in 2018 by T1International, a global advocacy group for people with Type 1 diabetes, announced that over a quarter of its American respondents reported rationing their insulin because of the cost — the highest rate in the developed world. Just over a third also said they’d had to ration diabetes supplies, like glucose test strips. The same year, Yale University researchers published the results of a similar survey in the Journal of the American Medical Association. A quarter of patients at the Yale Diabetes Center said they had taken less insulin than prescribed, or skipped doses, because they can’t consistently afford the medicine.
COVID-19 might not be life-threatening for most people with diabetes. But patients who ration their insulin could find their typical level of precariousness increased by a significant degree. “For that margin of people who are running low and can’t afford to buy ahead, it [the virus] could be an issue,” Petersen said. “If they’re already rationing, then they certainly are moving into that higher risk category.”
Elizabeth Pfiester, who founded T1International and lives with Type 1 diabetes herself, said that her organization has already heard of patients who haven’t been able to fill their prescriptions on time. “We also know that a lot of people are not able to get and keep that amount of prescription at one time. So there are many, many overlapping issues here, particularly if people are rationing,” she said.
Even when patients can afford to buy insulin, the process of storing an emergency supply sometimes strands them in a bureaucratic quagmire. Mishy Kats is on her husband’s insurance plan, which means she has a regular supply of insulin. But she, like Waxman, encountered trouble when she tried to stock up on the medicine. “They tell you to put your prescriptions in earlier, like a week ahead of time. But my insurance doesn’t usually let me do that,” she explained. “You have to wait until you’ve got three days of the prescription left, and that gives you very little time.” Kats counts the steps. A pharmacist can’t fill the prescription on their own, and simply hand her an emergency stash of insulin. Instead they have to send it to the insurance company, which has to contact her doctor, and if that doctor is overloaded, as they tend to be during pandemics, they can’t get to the request right away.
“It takes quite a bit of energy, especially if you’re already struggling,” she said. Waxman, similarly, is on Medicare, which gets her affordable insulin, if not the emergency supply she needed. There are still gaps in the system, and a pandemic could widen them. COVID-19 doesn’t just pose a physical risk to many patients with diabetes. Experts believe it could also stress the health-care system to a potentially dangerous level. If hospital beds and respirators aren’t widely available to patients who need them, elderly and immunocompromised people will be most at risk for serious illness and even death. Waxman said that she isn’t the only patient taking steps to protect themselves from the worst-case scenario. Fellow activists in Boston recently learned that an international student in Boston was giving away her extra insulin as she evacuated her dorm room. They picked up her supply, and donated it to local patients in need.
Pfiester is aware that patients like Waxman are sharing insulin, though she’s careful to stress that her organization doesn’t encourage people to do so. “It shouldn’t be the case,” she said, “but that is the reality. There is this sort of black market for people who need insulin.” The real impact of COVID-19 on this most vulnerable subsection of people with diabetes isn’t yet clear. But the pandemic could be especially damaging to people who have to acquire insulin through unofficial means. “If people aren’t able to leave their homes, they’re not going to be able to mail things. Or if postage and the mail stops. That’s just one area that could be impacted,” she said.
As the crisis deepens, legislators are exploring solutions to relieve stress on individuals and hospitals alike. But neither Kats or Waxman are satisfied with the Trump administration’s response, or with the Democratic Party’s alternatives. They’re both activists with the Right Care Alliance, which is affiliated with the nonpartisan Lown Institute and supports single-payer health care, and they want more expansive solutions than either party has proposed. Waxman, for example, voted for Sanders in the Massachusetts primary, and supports Medicare for All.
As they wait for more concrete solutions, she said, people could try to learn a little bit more about autoimmune diseases. “A little empathy and a lot more understanding would be very helpful,” she said.
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