The drug price provisions, which would not begin until 2022, were a surprise because they were not included in the original proposed rule issued in 2019.

This article was published on Thursday, November 19, 2020 in Kaiser Health News.

By Harris Meyer

Health insurance companies will have to give their customers estimated out-of-pocket costs for prescription drugs and disclose to the public the negotiated prices they pay for drugs, under an unexpected new Trump administration rule.

The administration said those requirements, part of a broader rule issued Oct. 29 forcing health plans to disclose costs and payments for most health care services, will promote competition and empower consumers to make better medical decisions.

The new rule does not, however, apply to Medicare or Medicaid.

The drug price provisions, which would not begin until 2022, were a surprise because they were not included in the original proposed rule issued in 2019.

It’s the departing Trump administration’s most ambitious effort to illuminate the complex, secret and lucrative system of prescription drug pricing, in which health plans, drug manufacturers and pharmacy benefit management firms agree on prices. The administration and Congress have tried and failed to reform part of that system — the rebates paid by drugmakers to the pharmacy benefit managers to get their products onto insurance plan formularies. Those payments, which some call kickbacks, are widely blamed for driving up costs to patients.

Patient advocates and policy experts, while generally supportive of the administration’s transparency concept, are divided on the cost-saving value of the new rule. Many say Congress needs to take broader action to curb drug prices and cap patient costs. Groups representing drugmakers, pharmacy benefit managers and commercial health plans have denounced the initiative, saying it will damage market competition and raise drug prices.

Advocates say the new rule will help patients in private health plans, including employer-based plans, and their physicians choose less expensive medications. It may even enable health plans to buy drugs more cheaply for their members. Three in 10 Americans say they have opted not to use a prescribed drug as directed because of the high cost, according to a KFF survey last year. (KHN is an editorially independent program of KFF.)

Under the new federal rule, starting in 2024 an insurance plan member can request and receive estimates of out-of-pocket costs for prescription drugs, both online and on paper, taking into account the member’s deductible, coinsurance and copays. Insurers say most plans already offer such cost-estimator tools.

Helping patients find drugs that cost them less could boost their compliance in taking needed medicines, thus improving their health.

“You can call your insurer now and ask what your copay is,” said Wendy Netter Epstein, a health law and policy professor at DePaul University in Chicago. “Patients often don’t do that. Whether or not this has an impact depends on whether patients take the initiative to obtain this information.”

Starting in 2022 under the new rule, private plans also will have to publish the prices they negotiated with drug companies and benefit management companies online in a digital, machine-readable format. That may be particularly helpful to employers that provide health insurance to workers, enabling them to seek the lowest price the drug manufacturer is offering to other purchasers.

The rule will not require plans to disclose rebates and other discounts they negotiate with drugmakers and pharmacy benefit managers.

That’s a disappointment to employers that provide health insurance for their workers. “We’d like a much clearer idea of how much we’re paying for every drug every time it’s dispensed,” said James Gelfand, senior vice president for health policy at the ERISA Industry Committee, which represents large self-insured employers. “We want to know where every cent in rebates and discounts is going. We’ll at least begin peeling back the onion. You have to start somewhere.”

But other experts argue the rule will do little to make medications more affordable. Indeed, they warn that publishing what health plans pay drug manufacturers could crimp some plans’ ability to get price concessions, raising the premiums and drug prices that plan members pay. That’s because manufacturers won’t want to give those discounts knowing other health plans and pharmacy benefit managers will see the published rates and ask for the same deals.

“Insurers and pharmacy benefit managers currently use rebates that are hidden from view to drive prices lower,” said Dr. Aaron Kesselheim, a professor of medicine at Harvard University who studies prescription drug policy. “If you make that transparent, you kind of reduce the main strategy payers have to lower drug prices.”

Patient advocates also questioned how useful the published rates will be for patients, because plans don’t have to post list prices, on which patient cost-sharing amounts are based. There also are practical limits to patients’ ability to price-shop for drugs, considering there may be only one effective drug for a given medical condition, such as many types of cancers.

Still, if the public knows more about how much health plans pay for drugs — and can estimate the size of the rebates and discounts that aren’t being passed on to patients — that could heighten pressure on federal and state elected officials to tackle the thorny issues of high prices and gaps in insurers’ drug coverage, which powerful industry groups oppose.

“If the information is presented to consumers so they realize they are paying a higher price without the benefit of the rebates, you’ll get a lot of angry consumers,” said Niall Brennan, CEO of the Health Care Cost Institute, a nonprofit group that publishes cost data.

The Biden administration is expected to keep the new price disclosure rule for health plans. In July, the Biden campaign issued a joint policy statement with Sen. Bernie Sanders (I-Vt.) favoring increased price transparency in health care.

But Kesselheim and other experts say Congress needs to consider stronger measures than price transparency to address drug affordability. These include letting the federal government negotiate prices with drugmakers, limiting the initial price of new drugs, capping price increases and establishing an impartial review process for evaluating the clinical value of drugs relative to their cost. Those are policies Biden has said he supports.

“There’s a limit to what transparency can do,” said Shawn Gremminger, health policy director at the Pacific Business Group on Health, which represents large self-insured employers. “That’s why we’re increasingly comfortable with policies that get at the underlying prices of drugs.” As an example, he cited the Trump administration’s proposal to tie what Medicare pays for drugs to lower prices in other countries.

Commercial insurers, drug manufacturers and pharmacy benefit managers are strongly opposed to the drug transparency rule. “This rule will disrupt the marketplace dynamics and undermine the highly competitive negotiations that kept net prices for brand medicines at a growth rate of just 1.7% in 2019,” said Katie Koziara, a spokesperson for the Pharmaceutical Research and Manufacturers of America. She wouldn’t say whether her group would sue to block the rule.

The survival of the rule, which draws its legal authority from the Affordable Care Act, also depends on the U.S. Supreme Court upholding the constitutionality of that law in a case argued on Nov. 10.

This article is part of a series on the impact of high prescription drug costs on consumers made possible through the 2020 West Health and Families USA Media Fellowship.

The problem starts with downloads. The system works only if a lot of people buy into it, but people will buy into it only if they know it works.

This article was published on Thursday, November 19, 2020 in Kaiser Health News.

By Rae Ellen Bichell

The app builders had planned for pranksters, ensuring that only people with verified COVID-19 cases could trigger an alert. They'd planned for heavy criticism about privacy, in many cases making the features as bare-bones as possible. But, as more states roll out smartphone contact-tracing technology, other challenges are emerging. Namely, human nature.

The problem starts with downloads. Stefano Tessaro calls it the "chicken-and-egg" issue: The system works only if a lot of people buy into it, but people will buy into it only if they know it works.

"Accuracy of the system ends up increasing trust, but it is trust that increases adoptions, which in turn increases accuracy," Tessaro, a computer scientist at the University of Washington who was involved in creating that state's forthcoming contact-tracing app, said in a lecture last month.

In other parts of the world, people are taking that necessary leap of faith. Ireland and Switzerland, touting some of the highest uptake rates, report more than 20% of their populations use a contact-tracing app.

Americans seem not so hot on the idea. As with much of the U.S. response to the pandemic, this country hasn't had a national strategy. So it's up to states. And only about a dozen, including the recent addition of Colorado, have launched the smartphone feature, which sends users a notification if they've crossed paths with another app user who later tests positive for COVID-19.

Within those few states, enthusiasm appears dim. In Wyoming, Alabama and North Dakota, some of the few states with usage data beyond initial downloads, under 3% of the population is using the app.

The service, built by Google and Apple and adapted by individual countries, states or territories, either appears as a downloadable app or as a setting, depending on the state and the device. It uses Bluetooth to identify other phones using the app within about 6 feet for more than 15 minutes. If a user tests positive for COVID-19, they're given a verification code to input so that each contact can be notified they were potentially exposed. The person's identity is shielded, as are those of the people notified.

"The more people who add their phone to the fight against COVID, the more protection we all get. Everyone should do it," Sarah Tuneberg, who leads Colorado's test and containment effort, told reporters on Oct. 29. "The sky's the limit. Or the population is the limit, really."

But the population could prove to be quite a limit. Data from early-adopter governments suggests even those who download the app and use it might not follow directions at the most critical juncture.

According to the Virginia Health Department, from August to November, about 613 app users tested positive and received a code to alert their contacts that they may have exposed them to the virus. About 60% of them actually activated it.

In North Dakota, where the outbreak is so big that human contact tracers can't keep up, the data is even more dire. In October, about 90 people tested positive and received the codes required to alert their contacts. Only about 30% did so.

Researchers in Dublin tracking app usage in 33 regions around the world have encountered echoes of the same issue. In October, they wrote that in parts of Europe fewer people were alerting their contacts than expected, given the scale of the outbreaks and the number of active app users. Italy and Poland ranked lowest. There, they estimated, just 10% of the app users they'd expect were submitting the codes necessary to warn others.

"I'm not sure that anybody working in this field had foreseen that that could be a problem," said Lucie Abeler-Dörner, part of a team at the Big Data Institute at Oxford studying COVID-19 interventions, including digital contact tracing. "Everybody just assumed that if you sign up for a voluntary app … why would you then not push that button?"

So far, people in the field only have guesses. Abeler-Dörner wonders how much of it has to do with people going into panic mode when they find out they're positive.

Tessaro, the University of Washington computer scientist, asks if the health officials who provide the code need more training on how to provide clear instructions to users.

Elissa Redmiles, a faculty member at the Max Planck Institute for Software Systems who is studying what drives people to install contact-tracing apps, worries that people may have difficulty inputting their test results.

But Tim Brookins, a Microsoft engineer who developed North Dakota's contact-tracing app as a volunteer, has a bleaker outlook.

"There's a general belief that some people want to load the app so that they can be notified if someone else was positive, in a self-serving way," he said. "But if they're positive, they don't want to take the time."

Abeler-Dörner called the voluntary notification a design flaw and said the alerts should instead be automatically triggered.

Even with the limitations of the apps, the technology can help identify new COVID cases. In Switzerland, researchers looked at data from two studies of contact-tracing app users. They wrote in a not-yet-peer-reviewed paper that while only 13% of people with confirmed cases in Switzerland used the app to alert their contacts from July to September, that prompted about 1,700 people who had potentially been exposed to call a dedicated hotline for help. And of those, at least 41 people discovered they were, indeed, positive for COVID-19.

In the U.S., another non-peer-reviewed modeling study from Google and Oxford University looking at three Washington state counties found that even if only 15% of the population uses a contact-tracing app, it could lead to a drop in COVID-19 infections and deaths. Abeler-Dörner, a study co-author, said the findings could be applicable elsewhere, in broad strokes.

"It will avert infections," she said. "If it's 200 or 1,000 and it prevents 10 deaths, it's probably worth it."

That may be true even at low adoption rates if the app users are clustered in certain communities, as opposed to being scattered evenly across the state. But prioritizing privacy has required health departments to forgo the very data that would let them know if users are near one another. While an app in the United Kingdom asks users for the first few digits of their postal code, very few U.S. states can tell if users are in the same community.

Some exceptions include North Dakota, Wyoming and Arizona, which allow app users to select an affiliation with a college or university. At the University of Arizona, enough people are using the app that about 27% of people contacted by campus contact tracers said they'd already been notified of a possible exposure. Brookins of Microsoft, who created Care19 Alert, the app used in Wyoming and North Dakota, said that offering an affiliation option also allows people who've been exposed to get campus-specific instructions on where to get tested and what to do next.

"In theory, we can add businesses," he said. "It's so polarizing, no businesses have wanted to sign up, honestly."

The privacy-focused design also means researchers don't have what they need to prove the apps' usefulness and therefore encourage higher adoption.

"Here there is actually some irony because the fact that we are designing this solution with privacy in mind somehow prevents us from accurately assessing whether the system works as it should," Tessaro said.

In states including Colorado, Virginia and Nevada, the embedded privacy protections mean no one knows who has enabled the contact-tracing technology. Are they people who barely interact with anyone, or are they essential workers, interacting regularly with many people that human contact tracers would never be able to reach? Are they crossing paths and trading signals with other app users or, if they test positive, will their warning fall silently like a tree in an empty forest? Will they choose to notify people at all?

Colorado's health department said it's issuing thousands of COVID codes a day. As of Wednesday, 3,400 people have used the codes to notify their contacts, it said. An automated system issues codes for positive COVID-19 tests even if the infected people don't have the app, making it impossible to know how many users are acting on the codes.

"I have hope that the vast majority of Coloradans will take this opportunity to give this gift of exposure notification to other people," said Tuneberg. "I believe Coloradans will do it."

Rae Ellen Bichell: rbichell@kff.org, @raelnb

Nearly all the vaccines advancing toward possible FDA approval this fall or winter are based on a design developed by government-funded research.

This article was published on Wednesday, November 18, 2020 in Kaiser Health News.

By Arthur Allen

When he started researching a troublesome childhood infection nearly four decades ago, virologist Dr. Barney Graham, then at Vanderbilt University, had no inkling his federally funded work might be key to deliverance from a global pandemic.

Yet nearly all the vaccines advancing toward possible FDA approval this fall or winter are based on a design developed by Graham and his colleagues, a concept that emerged from a scientific quest to understand a disastrous 1966 vaccine trial.

Basic research conducted by Graham and others at the National Institutes of Health, Defense Department and federally funded academic laboratories has been the essential ingredient in the rapid development of vaccines in response to COVID-19. The government has poured an additional $10.5 billion into vaccine companies since the pandemic began to accelerate the delivery of their products.

The Moderna vaccine, whose remarkable effectiveness in a late-stage trial was announced Monday morning, emerged directly out of a partnership between Moderna and Graham's NIH laboratory.

Coronavirus vaccines are likely to be worth billions to the drug industry if they prove safe and effective. As many as 14 billion vaccines would be required to immunize everyone in the world against COVID-19. If, as many scientists anticipate, vaccine-produced immunity wanes, billions more doses could be sold as booster shots in years to come. And the technology and production laboratories seeded with the help of all this federal largesse could give rise to other profitable vaccines and drugs.

The vaccines made by Pfizer and Moderna, which are likely to be the first to win FDA approval, in particular rely heavily on two fundamental discoveries that emerged from federally funded research: the viral protein designed by Graham and his colleagues, and the concept of RNA modification, first developed by Drew Weissman and Katalin Karikó at the University of Pennsylvania. In fact, Moderna's founders in 2010 named the company after this concept: "Modified" + "RNA" = Moderna, according to co-founder Robert Langer.

"This is the people's vaccine," said corporate critic Peter Maybarduk, director of Public Citizen's Access to Medicines program. "Federal scientists helped invent it and taxpayers are funding its development. … It should belong to humanity."

Moderna, through spokesperson Ray Jordan, acknowledged its partnership with NIH throughout the COVID-19 development process and earlier. Pfizer spokesperson Jerica Pitts noted the company had not received development and manufacturing support from the U.S. government, unlike Moderna and other companies.

The idea of creating a vaccine with messenger RNA, or mRNA — the substance that converts DNA into proteins — goes back decades. Early efforts to create mRNA vaccines failed, however, because the raw RNA was destroyed before it could generate the desired response. Our innate immune systems evolved to kill RNA strands because that's what many viruses are.

Karikó came up with the idea of modifying the elements of RNA to enable it to slip past the immune system undetected. The modifications she and Weissman developed allowed RNA to become a promising delivery system for both vaccines and drugs. To be sure, their work was enhanced by scientists at Moderna, BioNTech and other laboratories over the past decade.

Another key element in the mRNA vaccine is the lipid nanoparticle — a tiny, ingeniously designed bit of fat that encloses the RNA in a sort of invisibility cloak, ferrying it safely through the blood and into cells and then dissolving, thereby allowing the RNA to do its work of coding a protein that will serve as the vaccine's main active ingredient. The idea of enclosing drugs or vaccines in lipid nanoparticles arose first in the 1960s and was developed by Langer and others at the Massachusetts Institute of Technology and various academic and industry laboratories.

Karikó began investigating RNA in 1978 in her native Hungary and wrote her first NIH grant proposal to use mRNA as a therapeutic in 1989. She and Weissman achieved successes starting in 2004, but the path to recognition was often discouraging.

"I keep writing and doing experiments, things are getting better and better, but I never get any money for the work," she recalled in an interview. "The critics said it will never be a drug. When I did these discoveries, my salary was lower than the technicians working next to me."

Eventually, the University of Pennsylvania sublicensed the patent to Cellscript, a biotech company in Wisconsin, much to the dismay of Weissman and Karikó, who had started their own company to try to commercialize the discovery. Moderna and BioNTech later would each pay $75 million to Cellscript for the RNA modification patent, Karikó said. Though unhappy with her treatment at Penn, she remained there until 2013 — partly because her daughter, Susan Francia, was making a name for herself on the school's rowing team. Francia would go on to win two Olympic gold medals in the sport. Karikó is now a senior officer at BioNTech.

In addition to RNA modification and the lipid nanoparticle, the third key contribution to the mRNA vaccines — as well as those made by Novavax, Sanofi and Johnson & Johnson —- is the bioengineered protein developed by Graham and his collaborators. It has proved in tests so far to elicit an immune response that could prevent the virus from causing infections and disease.

The protein design was based on the observation that so-called fusion proteins — the pieces of the virus that enable it to invade a cell — are shape-shifters, presenting different surfaces to the immune system after the virus fuses with and infects cells. Graham and his colleagues learned that antibodies against the post-fusion protein are far less effective at stopping an infection.

The discovery arose in part through Graham's studies of a 54-year-old tragedy — the failed 1966 trial of an NIH vaccine against respiratory syncytial virus, or RSV. In a clinical trial, not only did that vaccine fail to protect against the common childhood disease, but most of the 21 children who received it were hospitalized with acute allergic reactions, and two died.

About a decade ago, Graham, now deputy director of NIH's Vaccine Research Center, took a new stab at the RSV problem with a postdoctoral fellow, Jason McLellan. After isolating and obtaining three-dimensional models of the RSV's fusion protein, they worked with Chinese scientists to identify an appropriate neutralizing antibody against it.

"We were sitting in Xiamen, China, when Jason got the first image up on his laptop, and I was like, oh my God, it's coming together," Graham recalled. The prefusion antibodies they discovered were 16 times more potent than the post-fusion form contained in the faulty 1960s vaccine.

Two 2013 papers the team published in Science earned them a runner-up prize in the prestigious journal's Breakthrough of the Year award. Their papers, which showed it was possible to plan and create a vaccine at the microscopic structural level, set the NIH's Vaccine Research Center on a path toward creating a generalizable, rapid way to design vaccines against emerging pandemic viruses, Graham said.

In 2016, Graham, McLellan and other scientists, including Andrew Ward at the Scripps Research Institute, advanced their concept further by publishing the prefusion structure of a coronavirus that causes the common cold and a patent was filed for its design by NIH, Scripps and Dartmouth — where McLellan had set up his own lab. NIH and the University of Texas — where McLellan now works — filed an additional patent this year for a similar design change in the virus that causes COVID-19.

Graham's NIH lab, meanwhile, had started working with Moderna in 2017 to design a rapid manufacturing system for vaccines. In January, they were preparing a demonstration project, a clinical trial to test whether Graham's protein design and Moderna's mRNA platform could be used to create a vaccine against Nipah, a deadly virus spread by bats in Asia.

Their plans changed rapidly when they learned on Jan. 7 that the epidemic of respiratory disease in China was being caused by a coronavirus.

"We agreed immediately that the demonstration project would focus on this virus" instead of Nipah, Graham said. Moderna produced a vaccine within six weeks. The first patient was vaccinated in an NIH-led clinical study on March 16; early results from Moderna's 30,000-volunteer late-stage trial showed it was nearly 95% effective at preventing COVID-19.

Although other scientists have advanced proposals for what may be even more potent vaccine antigens, Graham is confident that carefully designed vaccines using nucleic acids like RNA reflect the future of new vaccines. Already, two major drug companies are doing advanced clinical trials for RSV vaccines based on the designs his lab discovered, he said.

In a larger sense, the pandemic could be the event that paves the way for better, perhaps cheaper and more plentiful vaccines.

"It's a silver lining, but I think we are definitely pushing forward the way everyone is thinking about vaccines," said Michael Farzan, chair of the department of immunology and microbiology at Scripps Research's Florida campus. "Certain techniques that have been waiting in the wings, under development but never achieving the kind of funding they needed for major tests, will finally get their chance to shine."

Under a 1980 law, the NIH will obtain no money from the coronavirus vaccine patent. How much money will eventually go to the discoverers or their institutions isn't clear. Any existing licensing agreements haven't been publicized; patent disputes among some of the companies will likely last years. HHS' big contracts with the vaccine companies are not transparent, and Freedom of Information Act requests have been slow-walked and heavily redacted, said Duke University law professor Arti Rai.

Some basic scientists involved in the enterprise seem to accept the potentially lopsided financial rewards.

"Having public-private partnerships is how things get done," Graham said. "During this crisis, everything is focused on how can we do the best we can as fast as we can for the public health. All this other stuff is going to have to be figured out later."

"It's not a good look to become extremely wealthy off a pandemic," McLellan said, noting the big stock sales by some vaccine company executives after they received hundreds of millions of dollars in government assistance. Still, "the companies should be able to make some money."

For Graham, the lesson of the coronavirus vaccine response is that a few billion dollars a year spent on additional basic research could prevent a thousand times as much loss in death, illness and economic destruction.

"Basic research informs what we do, and planning and preparedness can make such a difference in how we get ahead of these epidemics," he said.

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

Arthur Allen: ArthurA@kff.org, @ArthurAllen202

Pain patients in New York have lost access to vital medicine since July 2019, when the state implemented an excise tax on many opioids.

This article was published on Tuesday, November 17, 2020 in Kaiser Health News.

By Anastassia Gliadkovskaya

Mike Angevine lives in constant pain. For a decade the 37-year-old has relied on opioids to manage his chronic pancreatitis, a disease with no known cure.

But in January, Angevine’s pharmacy on Long Island ran out of oxymorphone and he couldn’t find it at other drugstores. He fell into withdrawal and had to be hospitalized.

“You just keep thinking: Am I going to get sick? Am I going to get sick?” Angevine said in a phone interview. “Am I going to be able to live off the pills I have? Am I going to be able to get them on time?”

His pharmacy did not tell him the reason for the shortage. But Angevine isn’t the only pain patient in New York to lose access to vital medicine since July 2019, when the state implemented an excise tax on many opioids.

The tax was touted as a way to punish major drugmakers for their role in the opioid epidemic and generate funding for treatment programs. But to avoid paying, scores of manufacturers and wholesalers stopped selling opioids in New York. Instead of the anticipated $100 million, the tax brought in less than $30 million in revenue, two lawmakers said in interviews. None of it was earmarked for substance abuse programs, they said.

The state’s Department of Health, which has twice this year delayed an expected report on the impact of the tax, did not respond to questions for this story.

The tax follows strong efforts by federal and New York officials to tamp down the use of prescription opioids, which had already cut back some supply. Now, with some medications scarce or no longer available, pain patients have been left reeling. And the law appears to have missed its target: Instead of taking a toll on manufacturers, the greater burden appears to have fallen on pharmacies that can no longer afford or access the painkillers.

Among the companies that no longer sell opioids in New York is Epic Pharma. Independent Pharmacy Cooperative, a wholesaler, confirmed it no longer sells medications subject to the tax, but still sells those that are exempt, which are treatments for opioid addiction methadone and buprenorphine and also morphine. AvKARE and Lupin Pharmaceuticals said they do not ship opioids to New York anymore. Amneal Pharmaceuticals, which manufactures Angevine’s oxymorphone, declined to comment, as did Mallinckrodt.

Since the tax went into effect, Cardinal Health, which provides health services and products, published an extensive 10-page list of opioids it does not expect to carry. Cardinal Health declined to comment.

The New York tax is slowly gaining attention in other states. Delaware passed a similar tax last year. Minnesota is assessing a special licensing fee between $55,000 and $250,000 on opioid manufacturers. New Jersey Gov. Phil Murphy proposed such a tax this year but was turned down by the legislature.

The company that makes the first point of sale within New York pays the tax. That isn’t always the drugmaker. It can mean wholesalers selling to pharmacies here are assessed, explained Steve Moore, president of the Pharmacists Society of the State of New York.

Independent Pharmacy Cooperative said about half its revenue from opioid sales in New York would have gone to taxes.

Mark Kinney, the company’s senior vice president of government relations, said the law is putting companies in a very difficult position.

When wholesalers like IPC left the opioid market, competitive prices went with them.

Without these smaller wholesalers, it’s hard for pharmacies to go back to other wholesalers “and say, ‘Hey, your prices aren’t in line with the rest of the market,’” Moore said.

Indeed, nine independent pharmacies told KHN that when they can get opioids they are more expensive now. They have little choice but to eat the cost, drop certain prescriptions or pass the expense along.

“We can trickle that cost down to the patient,” said a pharmacist at New London Pharmacy in Manhattan, “but from a moral and ethics point of view, as a health care provider, it just doesn’t seem right to do that. It’s not the right thing to ask your patient to pay more.”

In addition, Medicare drug plans and Medicaid often limit reimbursements, meaning pharmacies can’t charge them more than the programs allow.

Stone’s Pharmacy in Lake Luzerne was losing money “hand over fist,” owner Leigh McConchie said. His distributor was adding the tax directly to his pharmacy’s cost for the drugs. That helped drive down his profit margins from opioid sales between 60% and 70%. Stone’s stopped carrying drugs like fentanyl patches and oxycodone, and though that distributor now pays the tax itself, the pharmacy is still feeling the effects.

“When you lose their fentanyl, you generally lose all their other prescriptions,” he said, noting that few customers go to multiple pharmacies when they can get everything at one.

If pharmacies have few opioid customers, those price hikes have less impact on their business. But being able to manage the costs is not the only problem, explained Zarina Jalal, a manager at Lincoln Pharmacy in Albany. Jalal can no longer get generic oxycodone from her supplier Kinray, though she can still access brand-name OxyContin. New York’s Medicaid Mandatory Generic Drug Program requires insurers to provide advance authorization for the use of brand-name prescriptions, delaying the approval process. Sometimes patients wait several days to get their prescription, Jalal explained.

“When I see them suffer, it hurts more than it hurts my wallet,” she said.

One of Jalal’s customers, Janis Murphy, needs oxycodone to walk without pain. Now she is forced to buy a brand-name drug and pays up to three times what she did for generic oxycodone before the tax went into effect. She said her bill since the start of this year for oxycodone alone is $850. Lincoln Pharmacy works with Murphy on a payment plan, without which she would not be able to afford the medication at all. But the bill keeps growing.

“I’m almost in tears because I cannot get this bill down,” she said in a phone interview.

Several pharmacists raised concerns that patients who lose access to prescription opioids may turn to street drugs. High prescription prices can drive patients to highly addictive and inexpensive heroin. McConchie of Stone’s Pharmacy said he now dispenses twice as many heroin treatment drugs as he did a year ago. Former opioid customers now come in for prescriptions for substance use disorder.

Trade groups and some physicians and state legislators opposed the tax before it went into effect, voicing concerns about a slew of potential consequences, including supply problems for pharmacists and higher consumer prices.

New London Pharmacy said one of its regular distributors stopped shipping Percocet, a combination of oxycodone and acetaminophen. Instead, the pharmacy orders from a more expensive company. The pharmacist estimated that a bottle of Percocet for which it used to pay $43 now costs up to $92.

“Even if we absorb the tax, we’re not getting a break from reimbursements either,” a pharmacist who spoke on the condition of anonymity explained, adding that insurance reimbursements have not increased in proportion to rising drug costs. “We’re losing.”

Latchmin Raghunauth Mondol, owner of Viva Pharmacy & Wellness in Queens, has also seen that problem. The pharmacy used to be able to purchase 100 15-milligram tablets of oxycodone for $15, but that’s now $70, she said, and the pharmacy is reimbursed only about $21 by insurers.

Other opioids are just not available.

Mondol said she has been unable to obtain certain doses of two of the most commonly prescribed opioids, oxycodone and oxymorphone — the drug Angevine was on.

After Angevine lost access to oxymorphone, his doctor put him on morphine, but it does not give him the same relief. He’s been in so much pain that he stopped going to physical therapy appointments.

“It’s a marathon from hell,” he said.