As is often the case with healthcare policy, however, the truth is far from simple.

This article was published on Wednesday, October 7, 2020 in Kaiser Health News.

By Alex Sakariassen

Throughout the 2020 election cycle, candidates’ positions on health care have been particularly important for voters with underlying and often expensive medical needs — in short, those with preexisting conditions.

It’s no surprise, then, that protections for people who have chronic health problems like diabetes and cancer have become a focal point for candidates nationwide — among them, Matt Rosendale, the Republican contender for Montana’s only U.S. House seat.

On Sept. 22, Rosendale’s campaign hit airwaves and online streaming services with an ad featuring a Whitefish resident named Sandee, whose son was diagnosed with a life-threatening disease. Sandee told the story of how Rosendale came to her family’s aid, concluding that “Matt fights for everyone with a preexisting condition.”

As is often the case with health care policy, however, the truth is far from simple. Rosendale and many other Republican congressional candidates face the challenge of convincing voters they support these safeguards even as they oppose the Affordable Care Act, which codifies those safeguards.

Polls show broad public support for keeping the ACA’s preexisting condition protections.

We decided to investigate.

Rosendale is up against Democrat Kathleen Williams for the congressional seat now occupied by Republican Rep. Greg Gianforte, who has entered the state’s gubernatorial race. The open seat has been controlled by the GOP for the past 12 terms, but this year’s race is expected to be close. Williams, who also ran for the seat in 2018, has made health care her top campaign issue.

We contacted the Rosendale campaign to find out the basis for his ad’s claim. Campaign spokesperson Shelby DeMars listed a range of health policies backed by the candidate that would help people with preexisting conditions directly or indirectly by holding down health care costs. She specifically pointed to Rosendale’s work on the state’s reinsurance program as Montana’s state auditor and insurance commissioner, a post he was elected to in 2016.

“Matt Rosendale is a champion for those with pre-existing conditions and he has the record to prove it,” DeMars said via email. “It is because of the Reinsurance program he implemented that Montanans with pre-existing conditions can access the affordable healthcare coverage they need.”

Examining Reinsurance

In a nutshell, Montana’s reinsurance program is designed to help insurers cover costly medical claims with a mix of federal pass-through dollars and funding generated by a premium tax on all major medical policies in the state. Gov. Steve Bullock announced the formation of a bipartisan group tasked with developing reinsurance program legislation in fall 2018, and the state’s legislature approved the plan in 2019, allowing Rosendale to apply for and receive the necessary waiver under the Affordable Care Act.

Subsequent news accounts indicated the idea worked. In-state insurers credited the program with lowering premiums by 8% to 14% for 2020. As Montana Health Co-op CEO Richard Miltenberger told MTN News shortly after the 2019 legislative session, “It allows the insurance companies to have rate stabilization for those really big claims, the ones that are the earthquakes in health insurance.” He went on to say that this stability “brings the cost down for the consumer.” More to the point, the American Medical Association has also stated that reinsurance not only serves to subsidize high-cost patients but “protects patients with pre-existing conditions.”

But there’s a rub.

The reinsurance program that Rosendale touts wouldn’t exist without a state innovation waiver created by the ACA, which Rosendale says he’ll work to repeal. That effort will doubtless continue to fuel pitched battles in Congress, and how the U.S. Supreme Court may rule on a pending ACA challenge remains a point of speculation. One thing is clear, though: If the entire ACA is thrown out, the reinsurance program goes with it, along with Montana’s Medicaid expansion and the ban on insurers excluding people with health problems from affordable coverage.

When asked about the resulting elimination of the reinsurance program, DeMars emphasized that Rosendale’s work as auditor has created a system that will ensure protections for preexisting conditions “regardless of what happens to the ACA.” She did not elaborate or explain what protections would remain if the ACA were repealed.

The Short-Term Plan Component

In defending his stance on preexisting conditions, Rosendale continues to be haunted by another health care policy specter from his political past. During his unsuccessful challenge against Democratic U.S. Sen. Jon Tester in 2018, Rosendale faced criticism for promoting short-term, limited-duration health insurance plans. Unlike plans offered on the individual marketplace, these short-term plans are exempt from the ACA’s ban on excluding people with preexisting conditions. And, under a 2018 regulatory change pushed by the Trump administration, the length of these short-term plans has been extended from three months to 12, with the potential to renew for up to three years.

As state auditor, Rosendale included those plans in his March 2020 roundup of year-round options for immediate coverage. They often exclude coverage for a variety of higher-cost benefits. In Montana, for example, a review by KFF found that of four short-term plans available in Billings in 2018, none offered coverage for maternity care, mental health, substance abuse or prescription drug services. (KHN is an editorially independent program of KFF.)

Historically, short-term plans were designed to help individuals fill gaps in health coverage. According to Dania Palanker, an assistant research professor at Georgetown University’s Center on Health Insurance Reforms, the role short-term plans play on today’s health insurance landscape is to attract younger, healthier individuals seeking low-cost options to cover catastrophic events. That splits insurers into two pools — those who are less likely to incur medical expenses, and those who are more likely to incur them. Costs on the individual market go up as a result, leaving people with preexisting conditions no other option than to pay higher premiums. Short-term plans are, Palanker said, “actively hurting people with preexisting conditions.”

“Promoting short-term plans and stumping on supporting protections for preexisting conditions are mutually exclusive,” she continued.

Asked whether the cost-lowering effect of a reinsurance program would be enough to offset the effects of short-term plans, Palanker said the only way such an offset would be enough is if the program encompassed short-term plans. She hasn’t seen that happen anywhere.

Our Ruling

A campaign ad says Rosendale “fights for everyone with a preexisting condition.” While it is true that health insurance premiums have dropped during Rosendale’s tenure as state auditor, the choice to establish Montana’s reinsurance program ultimately fell to decision-makers in the state’s legislature and the governor’s office. Since his ad’s claim simply states that he “fights” for people with preexisting conditions, his testimony in support of that program and role in securing the state waiver do seem to fit the bill.

In the long-term, however, Rosendale’s positions begin to run counter to the claim. His support for short-term, limited-duration plans poses a considerable threat to keeping health insurance affordable for all, and absent a solid plan from Congress to ensure that state reinsurance programs survive, his stated goal of repealing the ACA would actually serve to unravel the very protection he’s built his case on.

We rate this statement as Mostly False.

Even with the expanded safety net created by the ACA, by the end of summer a record number of people were poised to become newly uninsured.

This article was published on Wednesday, October 7, 2020 in Kaiser Health News.

By Steven Findlay

The Affordable Care Act, facing its first test during a deep recession, is providing a refuge for some — but by no means all — people who have lost health coverage as the economy has been battered by the coronavirus pandemic.

New studies, from both federal and private research groups, generally indicate that when the country marked precipitous job losses from March to May — with more than 25 million people forced out of work — the loss of health insurance was less dramatic.

That's partly because large numbers of mostly low-income workers who lost employment during the crisis were in jobs that already did not provide health insurance. It helped that many employers chose to leave furloughed and temporarily laid-off workers on the company insurance plan.

And others who lost health benefits along with their job immediately sought alternatives, such as coverage through a spouse's or parent's job, Medicaid or plans offered on the state-based ACA marketplaces.

From June to September, however, things weren't as rosy. Even as the unemployment rate declined from 14.7% in April to 8.4% in August, many temporary job losses became permanent, some people who found a new job didn't get one that came with health insurance, and others just couldn't afford coverage.

The upshot, studies indicate, is that even with the new options and expanded safety net created by the ACA, by the end of summer a record number of people were poised to become newly uninsured.

What's more, those losses could deepen in the months ahead, and into 2021, if the economy doesn't improve and Congress offers no further assistance, health policy experts and insurers say.

"It's a very fluid situation," said Sara Collins, vice president for healthcare coverage and access at the Commonwealth Fund, a New York-based health research group. "The ACA provides an important cushion, but we don't know how much of one yet, since this is first real test of the law as a safety net in a serious recession."

Collins also noted that accurately tracking health insurance coverage and shifts is difficult in the best of times; amid an economic meltdown, it becomes even more precarious.

Coverage Was Already on the Decline

Some 20 million people gained coverage between 2010 and 2016 under the ACA's expansion of Medicaid and its insurance marketplaces for people without employer-based coverage. A gradually booming economy after the 2008-2009 recession also helped. The percentage of the population without health insurance declined from about 15% in 2010 to 8.8% in 2016.

But then, even as the economy continued to grow after 2016, coverage began to decline when the Trump administration and some Republican-led states took steps that undermined the law's main aim: to expand coverage.

In 2018, 1.9 million people joined the ranks of the uninsured, and the Census Bureau reported earlier this month that an additional 1 million Americans lost coverage in 2019.

The accelerating decline is helping fuel anxiety over the fate of the ACA in the wake of the death of Supreme Court Justice Ruth Bader Ginsburg. The high court is scheduled to hear a case in November brought by Republican state officials, and supported by the Trump administration, that seeks to nullify the entire law.

In July, researchers at the Urban Institute, a Washington, D.C., think tank, forecast that around 10 million workers and their dependents would lose employer coverage in 2020. But they estimated that two-thirds of them will have found new coverage by year's end — leaving about 3.3 million uninsured.

A more recent Urban Institute report, released Sept. 18, and using 2020 data from the Census Bureau, calculated that of the roughly 3 million people under age 65 who had lost job-based insurance between May and July, 1.4 million found coverage elsewhere — most through Medicaid — and 1.9 million became newly uninsured. Notably, 2.2 million of those who lost their coverage were between 18 and 39 years old; 1.6 million were Hispanic.

Another recent study, using different methods, reported higher numbers for the same period. The analysis released by the Economic Policy Institute last month determined that between April and July 6.2 million people lost employer coverage. The authors didn't calculate how many found alternative coverage via Medicaid or the ACA, however.

Other findings support the notion that the health insurance loss trend shifted by mid summer. KFF, for example, published an analysis Sept. 11 showing that most companies that offered coverage to begin with chose to continue insuring furloughed and temporarily laid-off workers between March and the end of June. But as the virus continued to batter the economy, employers moved to permanently shed those jobs. (KHN is an editorially independent program of KFF.)

"The issue now is that the temporary layoffs have greatly decreased and permanent job losses, including jobs that came with health coverage, are increasing," said Cynthia Cox, a KFF vice president and director for the Program on the ACA.

Many low-income workers who lose their jobs and don't have coverage through a spouse or parent turn to Medicaid, the federal-state health program for low-income people. The Centers for Medicare & Medicaid Services reported last week that enrollment in Medicaid and the Children's Health Insurance Program grew by 4 million between February and June, a nearly 6% increase since the beginning of the coronavirus crisis.

The Impact of the Marketplaces

Gains and losses of coverage in the ACA marketplace are not yet clear, experts say. The Trump administration issued a report in June indicating that 487,000 people had, between January and June, enrolled in an ACA plan via the federal website, healthcare.gov. But that report failed to say how many people dropped an ACA plan in that period — for example, because they could no longer afford the premiums.

A study by Avalere, a health research and consulting firm in Washington, D.C., has estimated that enrollment in the ACA marketplaces since March could have swelled by around 1 million. That includes new enrollees in the 13 ACA marketplaces that states, plus the District of Columbia, operate. Many of those states held a "special enrollment period" when the pandemic hit. Healthcare.gov, run by the Trump administration, did not offer a special enrollment period.

About 11 million were enrolled in an ACA plan in February. Open enrollment for coverage that would start on Jan. 1, 2021, begins Nov. 1.

Jessica Banthin, a senior health policy researcher at the Urban Institute and until 2019 deputy director for health at the Congressional Budget Office, said it's anyone's guess how many people who lost their job-based coverage this year will choose this option. She said numerous factors will influence people's health insurance decisions this fall, and into 2021.

Chief among them is gauging whether they might soon get a new job, or get back an old job, that offers insurance. That may hold some people back from enrolling in an ACA plan this fall, Banthin said. Plus, buying insurance may be too expensive, especially for families more concerned with paying for housing, food and child care while going without a paycheck.

"Health insurance may not be their immediate concern," Banthin said. "Many people's lives have been disrupted as never before. There's a lot of trauma out there."

Collins of the Commonwealth Fund said that, even before the pandemic, a growing proportion of families were vulnerable to loss of coverage and care.

In a survey of more than 4,000 adults early this year, Collins and colleagues found a "persistent vulnerability among working-age adults in their ability to afford coverage and healthcare that could worsen if the economic downturn continues."

In large part, that's because 1 in 5 respondents who had coverage were "underinsured." Underinsurance reflects the extent to which coverage leaves people at risk of high out-of-pocket costs — a situation exacerbated by widespread job loss.

"Now is absolutely not be the time for the ACA to be further undermined, let alone killed outright," said Stan Dorn, director of the National Center for Coverage Innovation at Families USA.

But the transition has not been immediate. Regulators and scientists are generally cautious about new, unproven technologies.

This article was published on Tuesday, October 6, 2020 in Kaiser Health News.

By David Tuller

As the coronavirus pandemic broke out across the country, health care providers and scientists relied on the standard method for detecting respiratory viruses: sticking a long swab deep into the nose to get a sample. The obstacles to implementing such testing on a mass scale quickly became clear.

Among them: Many people were wary of the unpleasant procedure, called a nasopharyngeal swab. It can be performed only by trained health workers, putting them at risk of infection and adding costs. And the swabs and chemicals needed to test for the virus almost immediately were in short supply.

Some places, like Los Angeles County, moved early to self-collected oral swabs of saliva and sputum, with the process supervised at drive-thru testing sites by trained personnel swathed in protective gear. Meanwhile, researchers began investigating other cheaper, simpler alternatives to the tried-and-true approach — including dribbling saliva into a test tube.

But the transition has not been immediate. Regulators and scientists are generally cautious about new, unproven technologies and have an understandable bias toward well-established protocols.

"Saliva is not a traditional diagnostic fluid," said Yale microbiologist Anne Wyllie, part of a team whose saliva-based test, called SalivaDirect, received emergency use authorization from the Food and Drug Administration in August. "When we were hit by a virus that came out of nowhere, we had to respond with the tools that were available."

Eight months into the pandemic, the move toward saliva screening is gaining traction, with tens of thousands of people across the country undergoing such testing daily. However, saliva tests still represented only a small percentage of the more than 900,000 tests conducted daily on average at the end of September.

Yale is providing its protocol on an open-source basis and recently designated laboratories in Minnesota, Florida and New York as capable of performing the test. Besides the Yale test, the FDA has authorized emergency use of several others, including versions developed at Rutgers University, the University of Illinois at Urbana-Champaign, the University of South Carolina and SUNY Upstate Medical University. A further advance, an at-home saliva test, could be headed for FDA authorization, too.

Since the start of the pandemic, the Trump administration's approach to testing has been hampered by missteps and controversy. As a key health agency during an unprecedented emergency, the FDA's effectiveness relies on public trust in how it balances the need for speed in authorizing innovative products, like saliva tests and vaccines, with ensuring safety and effectiveness, said Ann Keller, an associate professor of health policy at the University of California-Berkeley.

"You obviously want to get new tests into the mix quickly in order to address the emergency, but you still need to uphold your standards," Keller said. The White House's public pressure on the FDA has complicated the agency's efforts by undermining its credibility and independence, she said.

Respiratory viruses colonize areas inside the nasal cavity and at the back of the throat. Besides the nasopharyngeal approach, nasal samples obtained with shorter and less invasive swabs have proven effective for the coronavirus and have become widely adopted, although they also generally require a health care worker's involvement. The millions of rapid tests that will be distributed across the country, per a recent White House announcement, rely on nasal swabs.

In the early months of the pandemic, some studies reported significant levels of the virus in oral secretions. In a Hong Kong study published in February, for example, the virus was found in the saliva of 11 of 12 patients with confirmed coronavirus infection.

In Los Angeles, which began using the oral swab test in late March, more than 10,000 samples are collected per day, said Fred Turner, chief executive of Curative, the company that developed it.

Turner sees an advantage to the swabbing strategy. The self-swab procedure takes only 20 to 30 seconds, while producing enough saliva for testing can take people two to three minutes, and sometimes longer, he said. "That might not sound like much difference," Turner said, "but it is when you're trying to push 5,000 people through a test site."

Curative's three labs process tens of thousands of tests from jurisdictions across the country in addition to L.A., Turner said. A test developed at SUNY Upstate Medical University, which is expected to become available at state labs around New York, also uses an oral swab.

For the Curative test, a health care worker is supposed to oversee the sample collection —reminding people to cough to bring up fluids, for example. When investigators at the University of Illinois launched what they called a "Manhattan Project" to develop a saliva test by mid-June, they hoped to make it possible for people to visit a collection site, drool into a test tube, seal it and drop it off without the aid of a health care worker.

The university is now testing more than 10,000 people a day at its three campuses and is seeking to expand access to communities across the state and country, said chemistry professor Paul Hergenrother, who led the research team. Like the similar Yale test, it is being made freely available to other laboratories. The University of Notre Dame, in Indiana, recently adopted it.

Like tests using nasopharyngeal and other kinds of nasal swabs, these saliva tests are based on PCR technology, which amplifies small amounts of viral genetic material to facilitate detection. Both the Yale and University of Illinois tests have managed to simplify the process by eliminating a standard intermediate step: the extraction of viral RNA. Their protocols also don't require viral transport media, or VTM — the chemicals generally used to stabilize the samples after collection.

"You don't need swabs, you don't need health care workers, you don't need VTM, and you don't need RNA isolation kits," Hergenrother said.

In correspondence published in the New England Journal of Medicine, the Yale team reported detecting more viral RNA in saliva specimens than in nasopharyngeal ones, with a higher proportion of the saliva tests showing positive results for up to 10 days after initial diagnosis.

The National Basketball Association provided $500,000 in support for the Yale project, said David Weiss, the NBA's senior vice president for player matters. He said the Yale team's decision to eliminate the process of RNA extraction, which separates the genetic material from other substances that could complicate detection, involved trade-offs but did not compromise the value of the test.

"Any molecular test that has an RNA extraction step is almost by definition going to be more sensitive, but it will also be more expensive and take longer and use supplies that are in shorter supply," he said. "If we're trying to look at surveillance testing to open up schools and nursing homes, a test that's still very sensitive and a lot cheaper is an important innovation."

Prices for coronavirus tests vary widely, running upward of $100. Tests based on the Yale or University of Illinois protocols, which require only inexpensive materials, could be available for as little as $10. The Curative testing service, which includes collection and transportation of samples as well as the laboratory component, averages around $150 per test depending on volume, said Clayton Kazan, chief medical director of the L.A. County Fire Department, which uses the tests.

Despite the advances in sample collection, tests using PCR — polymerase chain reaction — technology still require laboratory processing. Researchers have been investigating other approaches, including saliva-based antigen tests, that could be self-administered at home and would provide immediate results. (While PCR can detect coronavirus genetic material, antigen tests look for viral proteins that can signify a current infection.)

At least one company has announced it is seeking emergency use authorization for a saliva antigen test, although two others have dropped plans to develop their own versions as infeasible, according to The New York Times. Meanwhile, scientists at Columbia University, the University of Wisconsin and elsewhere are investigating the use of saliva with other kinds of rapid-test technologies.

"There's tons of interest" in an at-home saliva test, noted Yvonne Maldonado, chief of pediatric infectious diseases at Stanford University School of Medicine.

"People really do want to get that pregnancy-type kit out there," she said. "You could basically send people a little packet with little strips, and you pull off a strip every day and put in under your tongue."

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

According to the Colorado chapter of Type 1 International, an insulin access advocacy group, only 3% of patients with Type 1 diabetes under 65 could benefit from the cap.

This article was published on Monday, October 5, 2020 in Kaiser Health News.

By Markian Hawryluk

DENVER — D.j. Mattern had her Type 1 diabetes under control until COVID's economic upheaval cost her husband his hotel maintenance job and their health coverage. The 42-year-old Denver woman suddenly faced insulin's exorbitant list price — anywhere from $125 to $450 per vial — just as their household income shrank.

She scrounged extra insulin from friends, and her doctor gave her a couple of samples. But as she rationed her supplies, her blood sugar rose so high her glucose monitor couldn't even register a number. In June, she was hospitalized.

"My blood was too acidic. My system was shutting down. My digestive tract was paralyzed," Mattern said, after three weeks in the hospital. "I was almost near death."

So she turned to a growing underground network of people with diabetes who share extra insulin when they have it, free of charge. It wasn't supposed to be this way, many thought, after Colorado last year was the first of 12 states to implement a cap on the copayments that some insurers can charge consumers for insulin. But as the COVID pandemic has caused people to lose jobs and health insurance, demand for insulin sharing has skyrocketed. Many patients who once had good insurance are now realizing the $100 cap is only a partial solution, applying just to state-regulated health plans.

Colorado's cap does nothing for the majority of people with employer-sponsored plans or those without insurance coverage. According to the state chapter of Type 1 International, an insulin access advocacy group, only 3% of patients with Type 1 diabetes under 65 could benefit from the cap.

Such laws, often backed by pharmaceutical companies, give the impression that things are improving, said Colorado chapter leader Martha Bierut. "But the reality is, we have a much longer road ahead of us."

The struggle to afford insulin has forced many people into that underground network. Through social media and word-of-mouth, those in need of insulin connect with counterparts who have a supply to spare. Insurers typically allow patients a set amount of insulin per month, but patients use varying amounts to control their blood sugar levels depending on factors such as their diet and activity that day.

Though it's illegal to share a prescription medication, those involved say they simply don't care: They're out to save lives. They bristle at the suggestion that the exchanges resemble back-alley drug deals. The supplies are given freely, and no money changes hands.

For those who can't afford their insulin, they have little choice. It's a your-money-or-your-life scenario for which the American free-market health care system seems to have no answer.

"I can choose not to buy the iPhone or a new car or to have avocado toast for breakfast," said Jill Weinstein, who lives in Denver and has Type 1 diabetes. "I can't choose not to buy the insulin, because I will die."

Exacerbated by the Pandemic

Surveys conducted before the pandemic showed that 1 in 4 people with either Type 1 or Type 2 diabetes had rationed insulin because of the cost. For many Blacks, Hispanics and Native Americans, the pinch was especially bad. These populations are more likely to have diabetes and also more likely to face economic disparities that make insulin unaffordable.

Then COVID-19 arrived, with economic stress and the virus itself hitting people in those groups the hardest.

This year, the American Diabetes Association reported a surge in calls to its crisis hotline regarding insulin access problems. In June, the group found, 18% of people with diabetes were unemployed, compared with 12% of the general public. Many are wrestling with the tough choices of whether to pay for food, rent, utilities or insulin.

Rep. Dylan Roberts, a Democrat who sponsored Colorado's copay cap bill, said legislators knew the measure was only the first step in addressing high insulin costs. The law also tasked the state's attorney general to produce a report, due Nov. 1, on insulin affordability and solutions.

"We went as far as we could," Roberts said. "While I feel Colorado has been a leader on this, we need to do a whole lot more both at the state and national level."

According to the American Diabetes Association, 36 other states have introduced insulin copay cap legislation, but the pandemic stalled progress on most of those bills.

Insulin prices are high in the U.S. because few limits exist for what pharmaceutical manufacturers can charge. Three large drugmakers dominate the insulin market and have raised prices in near lockstep. A vial that 20 years ago cost $25 to $30 now can run 10 to 15 times that much. And people with diabetes can need as many as four or five vials per month.

"It all boils down to cost," said Gail deVore, who lives in Denver and has Type 1 diabetes. "We're the only developed nation that charges what we charge."

Before the COVID crisis triggered border closures, patients often crossed into Mexico or Canada to buy insulin at a fraction of the U.S. price. President Donald Trump has taken steps to lower drug prices, including allowing for the importation of insulin in some cases from Canada, but that plan will take months to implement.

The Kindness of Strangers

DeVore posts on social media three or four times a year asking if anybody needs supplies. While she's always encountered demand, her last tweet in August garnered 12 responses within 24 hours.

"I can feel the anxiety," deVore said. "It's unbelievable."

She recalled helping one young man who had moved to Colorado for a new job but whose health insurance didn't kick in for 90 days. She used a map to choose a random intersection halfway between them. When deVore arrived on the dusty rural road after dark, his car was already there. She handed him a vial of insulin and testing supplies. He thanked her profusely, almost in tears, she said, and they parted ways.

"The desperation was obvious on his face," she said.

It's unclear just how widespread such sharing of insulin has become. In 2019, Michelle Litchman, a researcher at the University of Utah's College of Nursing, surveyed 159 patients with diabetes, finding that 56% had donated insulin.

"People with diabetes are sometimes labeled as noncompliant, but many people don't have access to what they need," she said. "Here are people who are genuinely trying to find a way to take care of themselves."

If insulin affordability doesn't improve, Litchman suggested in a journal article, health care providers may have to train patients on how to safely engage in underground exchanges.

The hashtag #Insulin4all has become a common way of amplifying calls for help. People sometimes post pictures of the supplies they have to share, while others insert numbers or asterisks within words to avoid social media companies removing their posts.

Although drug manufacturers offer limited assistance programs, they often have lengthy application processes. So they typically don't help the person who accidentally drops her last glass vial on a tile floor and finds herself out of insulin for the rest of the month. Emergency rooms will treat patients in crisis and have been known to give them an extra vial or two to take home. But each crisis takes a toll on their long-term health.

That's why members of the diabetes community continue to look out for one another. Laura Marston, a lawyer with Type 1 diabetes who helped to expose insulin pricing practices by Big Pharma, said two of the people she first helped secure insulin, both women in their 40s, are in failing health, the result of a lifetime of challenges controlling their disease.

"The last I heard, one is in end-stage renal failure and the other has already had a partial limb amputation," Marston said. "The effects of this, what we see, you can't turn your back on it."

The underground sharing is how Mattern secured her insulin before recently qualifying for Medicaid. When someone on a neighborhood Facebook group asked if anybody needed anything in the midst of the pandemic, she replied with one word: insulin. Soon, an Uber driver arrived with a couple of insulin pens and replacement sensors for her glucose monitor.

"I knew it wasn't altogether legal," Mattern said. "But I knew that if I didn't get it, I wouldn't be alive."

Markian Hawryluk: MarkianH@kff.org, @MarkianHawryluk