What use could health care have for someone who makes things up, can’t keep a secret, doesn’t really know anything, and, when speaking, simply fills in the next word based on what’s come before? Lots, if that individual is the newest form of artificial intelligence, according to some of the biggest companies out there.

Companies pushing the latest AI technology — known as “generative AI” — are piling on: Google and Microsoft want to bring types of so-called large language models to health care. Big firms that are familiar to folks in white coats — but maybe less so to your average Joe and Jane — are equally enthusiastic: Electronic medical records giants Epic and Oracle Cerner aren’t far behind. The space is crowded with startups, too.

The companies want their AI to take notes for physicians and give them second opinions — assuming they can keep the intelligence from “hallucinating” or, for that matter, divulging patients’ private information.

“There’s something afoot that’s pretty exciting,” said Eric Topol, director of the Scripps Research Translational Institute in San Diego. “Its capabilities will ultimately have a big impact.” Topol, like many other observers, wonders how many problems it might cause — like leaking patient data — and how often. “We’re going to find out.”

The specter of such problems inspired more than 1,000 technology leaders to sign an open letter in March urging that companies pause development on advanced AI systems until “we are confident that their effects will be positive and their risks will be manageable.” Even so, some of them are sinking more money into AI ventures.

The underlying technology relies on synthesizing huge chunks of text or other data — for example, some medical models rely on 2 million intensive care unit notes from Beth Israel Deaconess Medical Center in Boston — to predict text that would follow a given query. The idea has been around for years, but the gold rush, and the marketing and media mania surrounding it, are more recent.

The frenzy was kicked off in December 2022 by Microsoft-backed OpenAI and its flagship product, ChatGPT, which answers questions with authority and style. It can explain genetics in a sonnet, for example.

OpenAI, started as a research venture seeded by Silicon Valley elites like Sam Altman, Elon Musk, and Reid Hoffman, has ridden the enthusiasm to investors’ pockets. The venture has a complex, hybrid for- and nonprofit structure. But a new $10 billion round of funding from Microsoft has pushed the value of OpenAI to $29 billion, The Wall Street Journal reported. Right now, the company is licensing its technology to companies like Microsoft and selling subscriptions to consumers. Other startups are considering selling AI transcription or other products to hospital systems or directly to patients.

Hyperbolic quotes are everywhere. Former Treasury Secretary Larry Summers tweeted recently: “It’s going to replace what doctors do — hearing symptoms and making diagnoses — before it changes what nurses do — helping patients get up and handle themselves in the hospital.”

But just weeks after OpenAI took another huge cash infusion, even Altman, its CEO, is wary of the fanfare. “The hype over these systems — even if everything we hope for is right long term — is totally out of control for the short term,” he said for a March article in The New York Times.

Few in health care believe this latest form of AI is about to take their jobs (though some companies are experimenting — controversially — with chatbots that act as therapists or guides to care). Still, those who are bullish on the tech think it’ll make some parts of their work much easier.

Eric Arzubi, a psychiatrist in Billings, Montana, used to manage fellow psychiatrists for a hospital system. Time and again, he’d get a list of providers who hadn’t yet finished their notes — their summaries of a patient’s condition and a plan for treatment.

Writing these notes is one of the big stressors in the health system: In the aggregate, it’s an administrative burden. But it’s necessary to develop a record for future providers and, of course, insurers.

“When people are way behind in documentation, that creates problems,” Arzubi said. “What happens if the patient comes into the hospital and there’s a note that hasn’t been completed and we don’t know what’s been going on?”

The new technology might help lighten those burdens. Arzubi is testing a service, called Nabla Copilot, that sits in on his part of virtual patient visits and then automatically summarizes them, organizing into a standard note format the complaint, the history of illness, and a treatment plan.

Results are solid after about 50 patients, he said: “It’s 90% of the way there.” Copilot produces serviceable summaries that Arzubi typically edits. The summaries don’t necessarily pick up on nonverbal cues or thoughts Arzubi might not want to vocalize. Still, he said, the gains are significant: He doesn’t have to worry about taking notes and can instead focus on speaking with patients. And he saves time.

“If I have a full patient day, where I might see 15 patients, I would say this saves me a good hour at the end of the day,” he said. (If the technology is adopted widely, he hopes hospitals won’t take advantage of the saved time by simply scheduling more patients. “That’s not fair,” he said.)

Nabla Copilot isn’t the only such service; Microsoft is trying out the same concept. At April’s conference of the Healthcare Information and Management Systems Society — an industry confab where health techies swap ideas, make announcements, and sell their wares — investment analysts from Evercore highlighted reducing administrative burden as a top possibility for the new technologies.

But overall? They heard mixed reviews. And that view is common: Many technologists and doctors are ambivalent.

For example, if you’re stumped about a diagnosis, feeding patient data into one of these programs “can provide a second opinion, no question,” Topol said. “I’m sure clinicians are doing it.” However, that runs into the current limitations of the technology.

Joshua Tamayo-Sarver, a clinician and executive with the startup Inflect Health, fed fictionalized patient scenarios based on his own practice in an emergency department into one system to see how it would perform. It missed life-threatening conditions, he said. “That seems problematic.”

The technology also tends to “hallucinate” — that is, make up information that sounds convincing. Formal studies have found a wide range of performance. One preliminary research paper examining ChatGPT and Google products using open-ended board examination questions from neurosurgery found a hallucination rate of 2%. A study by Stanford researchers, examining the quality of AI responses to 64 clinical scenarios, found fabricated or hallucinated citations 6% of the time, co-author Nigam Shah told KFF Health News. Another preliminary paper found, in complex cardiology cases, ChatGPT agreed with expert opinion half the time.

Privacy is another concern. It’s unclear whether the information fed into this type of AI-based system will stay inside. Enterprising users of ChatGPT, for example, have managed to get the technology to tell them the recipe for napalm, which can be used to make chemical bombs.

In theory, the system has guardrails preventing private information from escaping. For example, when KFF Health News asked ChatGPT its email address, the system refused to divulge that private information. But when told to role-play as a character, and asked about the email address of the author of this article, it happily gave up the information. (It was indeed the author’s correct email address in 2021, when ChatGPT’s archive ends.)

“I would not put patient data in,” said Shah, chief data scientist at Stanford Health Care. “We don’t understand what happens with these data once they hit OpenAI servers.”

Tina Sui, a spokesperson for OpenAI, told KFF Health News that one “should never use our models to provide diagnostic or treatment services for serious medical conditions.” They are “not fine-tuned to provide medical information,” she said.

With the explosion of new research, Topol said, “I don’t think the medical community has a really good clue about what’s about to happen.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The Host Julie Rovner KFF Health News @jrovner Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

The formal end May 11 of the national public health emergency for covid-19 will usher in lots of changes in the way Americans get vaccines, treatment, and testing for the coronavirus. It will also change the way some people get their health insurance, with millions likely to lose coverage altogether.

Meanwhile, two FDA advisory committees voted unanimously this week to allow the over-the-counter sale of a specific birth control pill. Advocates of making the pill easier to get say it could remove significant barriers to the use of effective contraception and prevent thousands of unplanned pregnancies every year. The FDA, however, must still formally approve the change, and some of its staff scientists have expressed concerns about whether teenagers and low-literacy adults will be able to follow the directions without the direct involvement of a medical professional.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Tami Luhby of CNN, and Margot Sanger-Katz of The New York Times.

Panelists Joanne Kenen Johns Hopkins Bloomberg School of Public Health and Politico @JoanneKenen Read Joanne's stories Tami Luhby CNN @luhby Read Tami's stories Margot Sanger-Katz The New York Times @sangerkatz Read Margot's stories

Among the takeaways from this week’s episode:

• The formal public health emergency may be over, but covid definitely is not. More than 1,000 people in the United States died of the virus between April 19 and April 26, according to the Centers for Disease Control and Prevention. While most Americans have put covid in their rearview mirrors, it remains a risk around the country.
• The Senate Finance Committee held a hearing on “ghost networks,” lists of health professionals distributed by insurance companies who are not taking new patients or are not actually in the insurance company’s network. Ghost networks are a particular problem in mental health care, where few providers take health insurance at all.
• Another trend in the business of health care is primary care practices being bought by hospitals, insurance companies, and even Amazon. This strategy was popular in the 1990s, as health systems sought to “vertically integrate.” But now the larger entities may have other reasons for having their own networks of doctors, including using their patients to create revenue streams.
• Court battles continue over the fate of the abortion pill mifepristone, as a federal appeals court in New Orleans prepares to hear arguments about a lower-court judge’s ruling that would effectively cancel the drug’s approval by the FDA. In West Virginia, the maker of the generic version of the drug is challenging the right of the state to ban medication approved by federal officials. At the same time, a group of independent abortion clinics from various states is suing the FDA to drop restrictions on how mifepristone can be prescribed, joining mostly Democratic-led states seeking to ensure access to the drug.

Plus for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: Slate’s “Not Every Man Will Be as Dumb as Marcus Silva,” by Moira Donegan and Mark Joseph Stern.

Joanne Kenen: The Baltimore Banner’s “Baltimore Isn’t Accessible for People With Disabilities. Fixing It Would Cost Over $650 Million,” by Hallie Miller and Adam Willis.

Tami Luhby: CNN’s “Because of Florida Abortion Laws, She Carried Her Baby to Term Knowing He Would Die,” by Elizabeth Cohen, Carma Hassan, and Amanda Musa.

Margot Sanger-Katz: The New Yorker’s “The Problem With Planned Parenthood,” by Eyal Press.

Also mentioned in this week’s episode:

• CNN’s “Here’s How the End of the Covid-19 Public Health Emergency Affects You,” by Tami Luhby and Alex Leeds Matthews.
• The New York Times’ “Corporate Giants Buy Up Primary Care Practices at Rapid Pace,” by Reed Abelson.
• Vox’s “Independents Back Abortion Rights. They’re Less Sure Democrats Do,” by Rachel M. Cohen.

Credits Francis Ying Audio producer Stephanie Stapleton Editor

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KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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For two decades, patients and physicians eagerly awaited a lower-cost version of the world’s bestselling drug, Humira, while its maker, AbbVie, fought off potential competitors by building a wall of more than 250 patents around it.

When the first Humira biosimilar — essentially a generic version — finally hit the market in January, it came with an unpleasant surprise. The biosimilar’s maker, Amgen, launched two versions of the drug, which treats a host of conditions including rheumatoid arthritis. They were identical in every way but this: One was priced at about $1,600 for a two-week supply, 55% off Humira’s list price. But the other was priced at around $3,300, only about 5% off. And OptumRx, one of three powerhouse brokers that determine which drugs Americans get, recommended option No. 2: the more expensive version.

As Murdo Gordon, an Amgen executive vice president, explained in an earnings call, the higher price enabled his company to give bigger rebates, or post-sale discounts, to Optum and other intermediaries. Most of that money would be passed on to insurers, and patients, he said. Gordon did not mention that the higher-priced option would leave some patients paying much more out-of-pocket, undermining the whole rationale for generic drugs.

The Optum-Amgen announcements perfectly elucidated why, after years of thundering against drugmakers, Congress and the administration have now focused on regulating the deal-makers known as pharmacy benefit managers, or PBMs. Sen. Bernie Sanders’ health committee grilled a panel of PBM and pharmaceutical executives Wednesday in preparation for a vote on PBM legislation, expected Thursday.

The three biggest PBMs — OptumRx, CVS Caremark, and Express Scripts — control about 80% of prescription drug sales in America and are the most profitable parts of the health conglomerates in which they’re nestled. CVS Health, the fourth-largest U.S. corporation by revenue on Fortune’s list, owns CVS Caremark and the insurer Aetna; UnitedHealth Group, a close fifth, owns Optum; and Cigna, ranking 12th, owns Express Scripts. While serving as middlemen among drugmakers, insurers, and pharmacies, the three corporations also own the highest-grossing specialty drug and mail-order pharmacies.

“John D. Rockefeller would be happy to be alive today,” said David Balto, a former Federal Trade Commission attorney who represents clients suing PBMs. “He could own a PBM and monopolize economic power in ways he never imagined.”

Drug manufacturers claim that exorbitant PBM demands for rebates force them to set high list prices to earn a profit. Independent pharmacists say PBMs are driving them out of business. Physicians blame them for unpredictable, clinically invalid prescribing decisions. And patients complain that PBMs’ choices drain their pocketbooks.

With PBMs driving prices, competition has had the opposite effect from what economic theory predicted Medicare patients would spend out-of-pocket on drugs, one large study showed. Over a five-year period, patients were paying 50% more for branded drugs that had competitors than for those that didn’t.

All this makes the PBMs ripe targets for politicians of both parties. Yet the complexity and obscurity of their role in the drug marketplace have skeptics wondering whether legislation advancing in the House and Senate will actually help patients or lower prices at the pharmacy counter.

“We may try to make things better and actually make things worse,” Sen. Rand Paul (R-Ky.) said at Wednesday’s hearing.

The PBMs pass along most of their rebates to health plans, which will bear a larger share of patient drug costs in coming years under Medicare changes that are part of the 2022 Inflation Reduction Act. It’s likely that pressure on insurers will be passed along to PBMs and result in even more aggressive limits on physician prescription decisions, said Troyen Brennan, an adjunct Harvard University professor who was chief medical officer for CVS Health from 2008 to 2022.

Several congressional bills target drug company rebates to PBMs and what’s known as “spread pricing” — the extra money PBMs collect from insurers over what they pay pharmacies for drugs.

But those aren’t the big PBM revenue sources anymore, Brennan said. PBMs today mostly make money by owning mail-order and specialty pharmacies and from the government’s 340B program, created to help hospitals that treat a disproportionately elderly and poor population. Medicare requires drugmakers to provide big discounts to participating hospitals and the growing rosters of affiliated physician groups they own, and some of those discounts end up with PBMs.

Employers and the federal government decide where most of the rebate money goes, PBM leaders testified Wednesday — and health plans decide what out-of-pocket costs their covered members will pay.

In other words, drug companies blame PBMs for high drug counter prices, PBMs blame insurers, and insurers blame the drug companies, all part of a health care system that hinges on an unspoken bargain: Make life comfortable for some — mostly the upper and middle classes — at the expense of lower-income and poorly insured people who get what they get.

 PBMs’ extraction of money from patients in the name of “copayments” at the pharmacy counter “reintroduces medical underwriting” that was stripped away by the Affordable Care Act, Craig Garthwaite, a health care researcher at Northwestern’s Kellogg School of Management, told a Senate panel last year. Insurers can no longer pick and choose whom to insure, as they could before the landmark 2010 health law. But they are finding ways to make the sickest pay.

“People with expensive conditions are paying more for insurance so healthy people can pay less,” he said.

PBMs Evolve From Minnows to Whales

In 1967, a year before the first PBM was founded, spending on prescription drugs outside of a hospital in the U.S. totaled around $3.3 billion, compared with more than $600 billion in net payments last year. By 2005, when Medicare expanded to include coverage of outpatient drugs, government and private insurers depended on PBMs’ negotiating power to keep rising drug prices in check.

The Federal Trade Commission and Justice Department allowed the largest PBMs to gobble up competitors and merge with insurers during the Bush and Obama administrations on the grounds that bolstering their powers might rein in prices. The FTC fought state investigations of anti-competitive behavior, saying that pressure on PBMs would benefit consumers.

The FTC under President Joe Biden has switched course, at least partly because of the arrival of Chair Lina Khan, a vigorous proponent of antitrust policy who launched an investigation of the PBMs last June.

It came partly at the request of independent pharmacists, who rely on PBM reimbursements for the drugs they purchase and provide consumers. Thousands of pharmacists complained to the FTC that PBMs force them to accept unfairly low reimbursements — then slam them with opaque rules requiring them to pay back some of the money months later. Pharmacists returned $12.6 billion to PBMs in 2021, according to a recent Medicare Payment Advisory Commission report.

During a recent week, said Ashley Seyfarth, who owns Kare Drug in Aztec, New Mexico, a PBM reclaimed money from one prescription because the paperwork was faxed. It clawed back cash from another sale because Kare had kept the drug on the shelf an extra day, beyond the PBM’s time limit, to accommodate a patient delayed getting to the store.

And her reimbursements are “beyond low,” Seyfarth said. She laughed when asked whether contract terms with the PBMs were negotiable. “You aren’t negotiating anything,” she said. “It’s take it or leave it.”

PBMs “have the right to audit whether contract terms are agreed to,” Angela Banks, vice president of policy at the Pharmaceutical Care Management Association, the PBM trade group, said at a recent conference. “A lot of the complaints about PBMs come from two parties from whom we are extracting money: manufacturers and pharmacists.”

PBM pricing decisions are often murky. According to a recent study, in 2018 Medicare spent $2.6 billion more through PBMs for a year’s worth of 184 generic drugs than they would have cost at Costco. Doctors and hospitals find PBM formularies baffling, with dozens of variations depending on a patient’s health plan.

When Philadelphia-area internist Amy Davis writes a prescription, she has no idea what the pharmacy will bill her patients, she said, or whether a PBM has decided the drug needs prior authorization. Sometimes she doesn’t find out until a patient returns months later saying they skipped the drug because it was too expensive.

“We physicians are completely in the dark,” she said. “And it’s designed that way.”

The PBMs’ growing use of proprietary pharmacies, including mail-order operations, can interfere with the care of patients like Jasmine St. Clair, a 45-year-old restaurant manager and mother of six in Mount Juliet, Tennessee.

In October 2021, St. Clair’s treatment for a rare, non-smoking-related lung cancer was delayed three weeks after PBM giant Express Scripts insisted her prescription be filled by Accredo, the mail-order pharmacy it owns.

In the meantime, her fatigue and lower-back and neck pain became so bad “I couldn’t pick up my daughter, who was 2,” St. Clair said. “And I was really getting scared.”

After St. Clair started the four-pills-twice-a-day regimen, her tumor rapidly shrank. But in January, her husband’s insurance changed and the medications didn’t arrive on time. When she called Accredo to see what was wrong, “they said, ‘You owe $8,000. Would you like to pay by card?’”

The pharmacy attached to her oncology practice straightened out the payment issue and ensured her continued use of the drug, St. Clair said. Her oncologist, Johnetta Blakely, said these are daily occurrences in her practice.

“The problem with the PBMs and the specialty pharmacies they own is that they are so complicated and intertwined it’s hard to figure out what the heck they are doing,” Blakely said. “All this bureaucratic stuff is a distraction and takes away from things I could be doing, like asking Jasmine about her kids.”

What’s the Remedy?

Bipartisan House and Senate bills would require PBMs to reimburse pharmacies serving Medicaid patients based on an authorized price list, rather than using standards that allegedly allow PBMs to lowball pharmacies. The Congressional Budget Office has estimated the bills would save the federal government $1 billion over 10 years. Another Senate bill would require PBMs to report more of their earnings to the FTC, and would ban deceptive and unfair fees.

But PBMs have shown themselves adept at finding ways around regulation. A federal rule scheduled to take effect next year would curtail PBM “clawbacks” on independent pharmacies. But PBM contracts sent out to pharmacies in recent weeks get around that by lowering reimbursement fees and putting a percentage of their payments to pharmacies into a kind of escrow, said Douglas Hoey, CEO of the National Community Pharmacists Association.

When the Trump administration considered banning brand-name drug rebates in 2017, PBMs set up companies in Ireland and Switzerland to take over the negotiations and purchases. Doing so offered a tax advantage and allowed the PBMs to avoid scrutiny of the quantity and nature of those deals. Recently, Express Scripts set up another company to purchase generic drugs, in the Cayman Islands.

And PBMs appear adept at moving money from one pocket to another. “Yesterday’s rebates are today’s fees and potentially tomorrow’s something else,” said John O’Brien, CEO of the pharmaceutical industry-funded research group, the National Pharmaceutical Council.

Every arrangement that PBMs make with manufacturers, employers, and insurers is secret and proprietary, said Barak Richman, a Duke University Law School professor. This makes it nearly impossible to examine what kind of deals PBMs are making.

Antitrust law could be brought to bear on the PBMs, Richman said. And the Biden administration has shown an eagerness to possibly reverse mergers that have increased PBM clout. The Justice Department has taken similar steps.

But federal officials will have to move fast to slow the PBMs. Insurers that don’t have PBMs as part of their business have been shrinking in recent years because of the growing clout and buying power of the companies.

“I predict that any health insurer that doesn’t have a PBM is going to disappear in 10 years,” said Neeraj Sood, a professor at the University of Southern California Sol Price School of Public Policy. “Otherwise, there is no way to compete with the big three.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Many people searching for a therapist or psychiatrist turn to the list of in-network providers offered by their insurance plan. But often, many of the doctors on the list don’t take that insurance plan, aren’t accepting new patients, or simply don’t answer the phone. Researchers and journalists call this phenomenon a “ghost network.”

So, who you gonna call when you encounter a ghost network? A ghostbuster.

That’s where Abigail Burman comes in. Burman is a lawyer who has studied ghost networks and volunteers her “ghostbusting” services to help people in her life navigate these networks and obtain care.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with Burman about what it took to get her friend the care she needed and what steps you can take to get insurance to pay for therapy.

Dan Weissmann @danweissmann Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting. Credits Emily Pisacreta Producer Adam Raymonda Audio Wizard Afi Yellow-Duke Editor Click to open the Transcript Transcript: Mental Health ‘Ghost Networks’ — And a Ghostbuster

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there–

So, one topic we have NOT addressed on this show until now has been mental health. And it’s not because it isn’t important, right?

Just ask anybody who’s lived through a multi-year global pandemic.

And it’s not like ACCESS to mental health care — figuring out how to pay for it, or how to get insurance to pay for it — isn’t a problem.

Actually, pretty much the opposite. It’s maybe the biggest problem. It’s just notoriously horrible.

We haven’t gone there because, well, number one: The horror stories are endless.

And two, I’ve had absolutely nothing to offer, in terms of what are we gonna do about it. Until now. Because now I’ve met somebody who has actually won a battle in this awful domain…

Abigail Burman: my name is Abigail Burman and I am an attorney specializing in consumer protection healthcare and technology.

Dan: Abigail’s also a policy expert on some of these problems And she’s become a problem-solver for people in her life.

Abigail Burman: It’s become a little bit of my superpower to just help friends find an in-network therapist or in-network psychiatrist.

Dan: Or, if there’s basically no such thing, to get their insurance to pay for an out-of-network provider.

She sent me a checklist she’d posted to an online forum, with the title, “A broad guide to getting therapy/psych appointments covered when you can’t find anyone in network”

It’s based on steps Abigail took on behalf of a friend recently, and it’s terrific.

It combines the usual unreasonable amount of persistence and grit, and time that not everybody has– and adds some key legal knowledge.

Now, this legal key won’t open every door, of course. It’s shape — and whether it’ll work at all for you– depends on where you get your insurance, and on where you live.

In fact, even with that legal knowledge on her side, the steps in Abigail’s checklist aren’t exactly what worked for Abigail in this case. It took more.

Again, more than is reasonable. More than most of us have in us, frankly.

But we’ll share what did work — because there ARE insights here that even us non-superheroes can definitely use :

And beyond the mechanics, the specific tips, I find Abigail’s approach — the spirit in which she suggests we apply ourselves to these problems– for ourselves or for others —really refreshing.

This is An Arm and a Leg, a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann, I’m a reporter, and I like a challen.ge.

So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life — and rarely has that word “depressing” carried more weight than in this story about mental health– and bring you something entertaining, empowering and useful.

Abigail’s personal super-powers grow out of her policy research.

Abigail Burman: So as with all good academic work, it started with a grudge. This is my super villain origin story.

Dan: It started during her first semester in law school, when she made an important discovery.

Abigail Burman: law school is uh, a toxic pressure cooker, and so I, like a lot of my classmates realized midway through that talking to someone would be a good idea.

Dan: So she looked up the therapists in her insurance company’s directory.

Abigail Burman: I called probably 20 doctors and didn’t hear back from anyone. I actually ended up seeing someone out of network.

Dan: And she got mad. And she decided: I’m gonna find out what the hell is going on here. So she spent pretty much the rest of law school researching exactly that.

And her research showed her: This thing she’d experienced? It was a known thing. It had a name.

Researchers and journalists called it a “ghost network.”

A “ghost network” is where your insurance company says to you: You need a therapist? Oh sure. Here’s a list of therapists who take our insurance– our “network directory.”

And maybe you call a few. Maybe you call twenty, like Abigail. Maybe you call 73, which is what one woman did, according to a recent Washington Post story. Yep. 73.

And they say, “What? No, we don’t take that insurance.” Or, “We’re not taking new clients.” Or nobody even answers the phone because it’s been disconnected for a long time.

And the problem isn’t that you’re having bad luck. The problem is: The network itself — all these providers supposedly waiting to take your call and take your insurance — is a ghost, a phantasm.

Of course, running into a ghost network can conjure up all the feelings of being ghosted.

Abigail Burman: That can be so isolating when you just think this is a personal annoyance rather than being able to name it as a bigger problem with the entire system.

Dan: I mean, it can also feel like, it can feel like a personal failure, right? Like, oh, a real adult could do this.

Abigail Burman: Exactly. If I just organized my life better, if I just tried harder, this would be better.

Dan: But Abigail’s research showed her: This is not a personal failing. A study of networks in just one city, Washington, DC, found that only half of the phone numbers listed even worked at all.

And Abigail’s everyday experience showed her: Those findings in Washington, DC, were not identifying an isolated trouble spot

.

Abigail Burman: I realized I was onto something when I would tell people about this and everyone has a story.

Dan: So she let her rage fuel years of academic work. She published some findings in a long article for the Yale Law and Policy Review called Laying Ghost Networks to Rest.

The paper documents the problem’s scale — spoiler alert, it’s REALLY big, and not limited to mental health — and lays out policy prescriptions for fighting them.

Meanwhile, Abigail has graduated from law school, and moved to DC. Now it’s late 2022. Abigail’s friend needs a therapist, and she’s like…

Abigail Burman: Put me in. I’m ready.

Dan: This starts with Abigail’s friend trying things the “normal” way:

Abigail Burman: They called like 10 or so and just aren’t getting any hits either people are not actually taking new patients or they just are not replying. I think we got one or two wrong numbers.

Dan: Again, normal. And not a step you can skip. Going up against this problem — and documenting it — is what gives you standing to tell the insurance company to solve it for you.

Abigail Burman: They had managed to get through to one provider, but they kept saying that their earliest appointment would be in four months, which is unacceptable And so this is where I came in.

Dan: It’s unacceptable morally. It’s unacceptable as a treatment plan. And because Abigail has studied the law here, she knows it’s unacceptable legally. At least in some situations. Including her friend’s.

Abigail Burman: Affordable Care Act, marketplace plans, Medicaid plans, and Medicare plans are all subject to rules around network adequacy.

Dan: Network adequacy: If you’re gonna take away one legal term from this episode that’s the big one: Network adequacy. Are there enough doctors in your network to actually provide care?

That’s the bedrock for everything else here.

Abigail Burman: Let’s say you have like a 500 person directory, two of them will actually pick up if you call, but finding them requires the other 498. That’s not what you are entitled to. That is not an adequate network. The key with all of these rules and regulations is that, um, it’s meant to make seeking care not a burden.

That when you are already in a place of distress, it should be reasonably easy for you to reach out and get help. And I think that has to be your guidepost. Think about what it is reasonable to expect of someone in your situation.

Dan: So, if you’ve called, say, ten numbers and are coming up empty, you’ve got pretty good evidence that the answer is… what’s being expected of you isn’t reasonable.

You’re gonna be telling the insurance company: If you’ve got an adequate network, prove it.

Abigail Burman: Your stance at that point that you wanna hold firm in is, I have called doctors. I have done my job, I have spent this many hours.

Thank you. But no, I will not be doing that anymore. Now the burdens shift to you.

Dan: In other words, if your network really is adequate, you’ve gotta find me somebody in it. Or pay for me to go outside of it.

And I’ve gotta acknowledge here: As bedrock goes, it’s … fragmented. And incomplete. For starters, every state makes its own rules for network adequacy.

And within a given state, the rules are different for those three different kinds of plans: Obamacare plans, Medicaid, and Medicare.

And for a lot of us who get insurance from work… we’d be looking at a whole different legal structure.

But beyond the legal specifics the basic idea is: Somewhere, somehow, you’ve got a right to actual care from somebody who takes your insurance.

Insurance is a contract. They’re getting something — money — and you’re supposed to get something: Access to care from somebody for in-network rates.

Abigail Burman: Either you or someone else is paying for you to get this service from your insurer. This is what that money is supposed to cover. And if you can’t get that, someone’s just getting money for free.

Dan: So, I’m just gonna note a couple of Abigail’s broad guidelines here, and we’ll post a link to her full checklist wherever you’re listening to this.

And we’ll supplement it with some of what Abigail told me when we talked. For now, the gist is:

Her list starts with legal terms like “network adequacy” that you can combine in a Google search– along with the name of your state– to see how they apply to your situation.

And it ends with some general purpose advice like, quote “The key is to be a giant asshole.” Unquote.

Abigail Burman: I don’t mean, you know, screaming at people using swear words, et cetera, but it can feel like you are being a jerk if you stand your ground and say no. But it is worth it. And if nothing else, just remember that. Like you’re never gonna talk to any of these people again.Probably.

So, worse comes to worse, if you get too stressed out, you can hang up and call again.

Dan: In other words, the key isn’t to BE an asshole. It’s to tolerate FEELING like you’re being an asshole.

But what you’re doing is letting the other person know: You know your actual rights.

I tell Abigail, it reminds me of how Jacqueline Fox– a law professor who used to do this kind of problem-solving as an attorney — put it: You want the person on the other side to get the feeling, “There’s a grown-up here who seems to be getting annoyed.”

Abigail Burman: Exactly. I think that’s the, the exact vibe you want is kind of, um, I’m disappointed, not angry. And I, that is how I try to go into these is sort of like, here is the rule, here is what you have done. I simply don’t understand why you can’t comply with the law. Um, also love to you, you always wanna put a specific request at the end.

Uh, say exactly what you want, um, just so it’s really clear. Uh, and ideally, you know, say, I, I expect to reply back by this time, just so there’s something keeping the conversation moving. If you don’t get a response, you can then follow up and say, I thought, you know, I’d ask for a reply by then. Where, where is my reply?

Um, and so, yeah, that’s kind of the, the general structure you wanna take in these interactions is like, I have seen that. Like, I know this is what I’m entitled to. This is what happened. How are we, collectively working together, going to fix this?

Dan: Coming up in a minute: What happened when Abigail actually went into battle for her friend.

(Midroll)

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America., Their work wins all kinds of journalism awards every year, and I’m honored to work with them.

So, Abigail’s friend had called a bunch of therapists that were supposed to be covered by their insurance– found bupkis. Abigail steps in.

Her friend happens to be on Medicaid, which is kind of a best-case scenario for this sort of thing: Not only is Medicaid regulated by states, there tend to be detailed rules — contractual language even — about things like network adequacy.

Abigail looked up the specific regs that applied in her friend’s case, kept them on hand, and started in with the phone calling.

If you’ve been listening for a while, or if you’ve done something like this, some of what happened will be familiar.

Once the first few calls didn’t get anywhere, Abigail started working her way up.

Abigail Burman: The language that’s often used is you wanna ask to have your complaint or your grievance escalated. You want it to go to someone who maybe has a little more power, little more experience.

Dan: She thinks it took maybe five calls to get to anybody at the insurance company whose response went beyond, “Huh? Whatever. Sucks to be you.”

Abigail Burman: I finally got a woman who was like, yeah, this is bad. What you want is what we call an administrative grievance. She said, okay, I’m going to with you on the phone. I am gonna call two or three doctors and see if they have an appointment. If not, we will file an administrative grievance.

Dan: The woman dialed a few doctors while Abigail was on the phone, got nowhere, and filed an administrative grievance.

Which, you know, great. But that’s not a doctor’s appointment. File it under Abigail’s general advice of: Do everything. Go on record everywhere. And keep going.

Next, Abigail kept calling, kept asking to talk with someone at the insurance company with more juice. Someone who could actually authorize paying for an appointment with an out-of-network doc, since there weren’t in-network docs.

And after another like full day on the phone, she got to that someone.

Abigail made her specific request: I want you to authorize payment for out-of-network provider, as the regulations require. And…

Abigail Burman: They say we have no process for this. This does not exist.

Dan: Like, this thing that the law says they have to do– get you a provider and cut a check — this person’s saying they have no process for it.

Abigail Burman: I read them the regulation over the phone. It did not, did not change their position.

Dan: I would’ve really struggled in that conversation to contain my rage. I mean, it’s just flabbergasting, right? Like, I spent all day getting on the phone. I mean, all of this reminds me of the Wizard of Oz, and they were like, no one can see Oz.

And you know, she’s, she’s like, I am going to see him. And, and then she sees him and he’s like, go away and come back tomorrow. . I am Oz.

Abigail Burman: exactly. It is a, it is a complete runaround. Um, and so when you get to this place, I think you have to let the rage fuel you, maybe take a break, eat some snacks.

Dan: And keep going with other strategies. Including ones that may seem pretty out of the way at first.

So Abigail called the office of her friend’s state representative.

And of all the lessons from Abigail’s story, this one may be the MOST important.

Abigail Burman: This is the secret trick for any interaction you are having, largely with government agencies, but also sometimes with private companies. Um, all of your elected representatives from local through to Congress, they have staffers whose only job it is, is to make your interactions with these systems easier.

Dan: Abigail actually worked for a member of Congress once upon a time, so she’s seen this all from the other side.

Abigail Burman: Your elected representatives, have enormous resources at their disposal. And the good ones know that the way you get reelected is by helping people with their specific problems and will go outta their way to do it.

Dan: You don’t have to be a former Congressional aide yourself to call your state representative’s office. I mean, in most cases, a state rep doesn’t even have THAT many constituents. But they do have staff.

So, Abigail didn’t call the state rep’s office because she knew someone there. She called because she knew what someone there could DO.

And now you know it too.

Abigail Burman: These staffers have secret phone numbers, they have email addresses, they get things fixed.

Dan: A staffer had given Abigail a direct email to the right person at the state regulator’s office–.

Abigail Burman: And so we emailed them, got a reply back almost immediately saying, yeah, you’re right, this is bad.

Dan: And then she heard from somebody ELSE altogether.

Abigail Burman: I think within an hour or two, uh, got a phone call from the healthcare plans lobbyists for the state, saying that, yeah, she was personally going to fix this, promising an appointment within the next two days.

Dan: Holy shit. I mean I love that it’s the lobbyist 

Abigail Burman: Yeah, that was special.

Dan: I mean, it’s very interesting, right? That like the official channels did not go anywhere. That what happened was the political actor got involved and a political actor on the insurance side came and made it happen.

Abigail Burman: Exactly. The key is you just, you have to keep moving up and you have to press on all the levers that you can.

Dan: In this case, because Abigail’s friend was on Medicaid, the state was actually paying the insurance company directly, so getting them involved was probably a more effective lever than in other situations. But it worked!

Something actually worked.

And making that happen took an unbelievable amount of work, amount of resources. That is one of the BIG take-aways here, and it’s not exactly a cheerful one.

Abigail estimates she put like half a workweek into this. [I mean, holy crap.]

Abigail Burman: I was lucky enough to be in a job where I, I could, you know, my boss was understanding I could be taking these calls at the office for sometimes hours at a time.

Dan: And she’s fluent in English. And she’s comfortable navigating bureaucracy, to say the least.

Abigail Burman: I am a lawyer who worked in healthcare policy before law school, and I do this work professionally, and it still took me so long. And that was with the added privilege of, getting taken seriously because of my education, because I’m white, because of all these things.

Dan: I mean, all of these advantages are among the reasons Abigail’s firm charges hundreds of dollars an hour for her time.

So the resources it took to get this individual win are, on that scale, staggering. It absolutely blows.

And yet: The part of Abigail’s story that sticks out the most to me– beyond the specific tips, and beyond the outrage– is an idea that we’ve started talking a little more about on this show recently.

We’ve talked for a long time about self-defense against this awful system. But self defense only gets us so far — especially when we’re actually sick, or needing help. We’re not in the best position to engage in a fight.

But we can fight for each other. And you don’t always have to be a lawyer.

Abigail Burman: This is a service you can provide for people. If you are the sort of person or you know, someone who really enjoys renegotiating their internet plan, you will probably be great at this.

Dan: Sometimes just showing up is enough. Especially in costume.

Abigail Burman: I have gone and just stood in the corner for people to be the scary person who’s wearing a suit.

Dan: And you don’t always even need a suit. We talked recently with a professional advocate who said, “When I get on a call with a client and say, ‘I’m her advocate,’ I can feel the person on the other end of the line straighten up a little bit.”

And as we said then: You don’t have to be a professional to say “I’m this person’s advocate.” 

The person on the other end of the phone doesn’t need to know you’re that person’s roommate, or just their friend.

The idea is, take what you have — whatever knowledge you have, whatever skills you have, whatever TIME you have, and yes whatever privilege you have — and see if you can put it to use.

Abigail Burman: You know, that this, uh, we talk a lot about mutual aid and networks of care and I think this is a huge part of it is just showing up for the bureaucracy side.

Dan: Of course, that’s not going to make all the difference we need.

Abigail Burman: Looking out for our friends, helping people in our community is only gonna get us so far, we still need so many more changes from lawmakers to make this a system that works for everyone.

Dan: And yes, of course that’s true. So Abigail is out there advocating for policy change. But because none of that is happening tomorrow she’s ALSO showing up right now for people in her life, helping fight one battle at a time.

So, just to review, I’m taking three big things from Abigail’s fight here.

One is a little basket of possible tools: Think about “network adequacy” as a demand — your insurance company owes you a doctor. Think about the disappointed-not-angry vibe. Think about your state rep’s office as a possible resource. — and again, we’re gonna post some of what Abigail has written so you can find it from wherever you’re listening to this.

Two: Jesus Christ, this was a lot of work. Even with Abigail’s SIGNIFICANT advantages, and the various pieces of wisdom she shared about hacking through, this is not someone most of us could easily take on.

And three: Let’s think about these as fights we take on for each other.

That’s something I really want to work toward, something I hope this show can do: How do we become a community — however big, however loose — of folks who can help each other HELP EACH OTHER?

It’s big. We’ll take it one step at a time.

For now, if you haven’t already, check out our First Aid Kit newsletter. That’s where we’ve been writing down a lot of the tips and strategies we’ve been learning about HOW to take on these fights.

You can find everything we’ve written to date — more than twenty installments so far — at arm and a leg show dot com, slash, first aid kit.

I’ll catch you soon.

Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with help from Emily Pisacreta, and edited by Afi Yellow-Duke and Ellen Weiss — welcome aboard, Ellen!

Daisy Rosario is our consulting managing producer. Adam Raymonda is our audio wizard. Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. Sarah Ballema is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News–formerly known as Kaiser Health News.

That’s a national newsroom producing in-depth journalism about health care in America, and a core program at KFF — an independent source of health policy research, polling, and journalism.

And yes, you did hear the name Kaiser in there, and no: KFF isn’t affiliated with the health care giant Kaiser Permanente. You can learn more about KFF Health News at arm and a leg show dot com, slash KFF.

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

Thanks to Public Narrative — That’s a Chicago-based group that helps journalists and nonprofits tell better stories– for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. 

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La marihuana y otros productos que contienen THC, el principal ingrediente psicoactivo de la planta, se han vuelto más potentes y peligrosos a medida que la legalización los ha vuelto más accesibles.

Décadas atrás, el contenido de THC de la hierba solía ser inferior al 1,5%. Hoy, algunos productos tienen más de un 90%.

La euforia de antaño ha dado paso a algo más alarmante. Cientos de miles de personas llegan a salas de emergencias por crisis relacionadas con la marihuana, y millones sufren trastornos psicológicos vinculados al consumo de cannabis, según investigaciones federales.

Pero los organismos reguladores no están a la altura.

En los estados que permiten la venta y el consumo de la marihuana y sus derivados, la protección al consumidor no es consistente.

“En muchos estados, los productos tienen una etiqueta de advertencia y poco más por parte de las entidades reguladoras”, dijo Cassin Coleman, vicepresidente del comité de asesoramiento científico de la Asociación Nacional de la Industria del Cannabis.

En general, el gobierno federal no ha intervenido. Sigue prohibiendo la marihuana como sustancia catalogada en la Lista 1 —como droga sin uso médico aceptado y con un alto riesgo de abuso— en virtud de la Ley de Sustancias Controladas (CSA). Pero en lo que respecta a la venta de cannabis, que muchos estados han legalizado, no regula características como la pureza o la potencia.

La Administración de Drogas y Alimentos (FDA) “básicamente se ha cruzado de brazos y no ha cumplido con su deber de proteger la salud pública”, afirmó Eric Lindblom, de la Facultad de Derecho de la Universidad de Georgetown que anteriormente trabajó en el Centro para Productos del Tabaco de la FDA.

La marihuana se ha transformado profundamente desde que generaciones de estadounidenses la usaron por primera vez.

El cannabis se cultiva para suministrar dosis mucho más altas de THC. En 1980, el contenido de THC de la marihuana confiscada era inferior al 1,5%. Hoy en día, muchas variedades de flores de cannabis —la materia vegetal que se puede fumar en un porro— tienen más de un 30% de THC.

Recientemente, en un dispensario de California el menú incluía una variedad con un 41% de THC.

La legalización también ha abierto la puerta a productos que se extraen de la marihuana pero que no siquiera parecidos: concentrados de THC aceitosos, cerosos o cristalinos que se calientan e inhalan mediante el vapeo o el dab, utilizando dispositivos parecidos a un soplete.

Los concentrados actuales pueden tener más de un 90% de THC. Algunos se anuncian como THC casi puro.

Pocos personifican la expansión de la marihuana de forma tan clara como John Boehner, ex presidente de la Cámara de Representantes de Estados Unidos. El republicano de Ohio se opuso durante mucho tiempo a la marihuana y, en 2011, se declaró “inalterablemente contrario” a su legalización.

Ahora forma parte del consejo directivo de Acreage Holdings, un productor de derivados de la marihuana.

Y Acreage Holdings ilustra la evolución del sector. Su marca Superflux comercializa un producto para vapear —”resina pura en un formato cómodo e instantáneo”— y concentrados como “budder”, “sugar”, “shatter” y “wax”. La empresa anuncia su concentrado de “THCa cristalino” como “lo último en potencia”.

Según el Instituto Nacional sobre el Abuso de Drogas, las concentraciones más elevadas entrañan mayores riesgos. “Los riesgos de dependencia física y adicción aumentan con la exposición a altas concentraciones de THC, y las dosis más altas de THC tienen más probabilidades de producir ansiedad, agitación, paranoia y psicosis”, se explica en su sitio web.

En 2021, 16,3 millones de personas en Estados Unidos —el 5,8% de las personas de 12 años en adelante— habían sufrido un trastorno por consumo de marihuana en el último año, según una encuesta publicada en enero por el Departamento de Salud y Servicios Humanos (HHS).

Esta cifra es muy superior a la suma de los trastornos por consumo de cocaína, heroína, metanfetamina, estimulantes de venta bajo receta, como Adderall, o analgésicos recetados, como fentanilo y OxyContin.

Otras drogas son más peligrosas que la marihuana, y la mayoría de las personas afectadas por su consumo padecieron un caso leve. Pero aproximadamente 1 de cada 7 —más de 2,6 millones de personas— padecieron un caso grave, según la encuesta federal.

La mayoría de los médicos equiparan el término “trastorno grave por consumo de sustancias” con la adicción, señaló Wilson Compton, subdirector del Instituto Nacional sobre el Abuso de Drogas.

El trastorno por consumo de cannabis “puede ser devastador”, afirmó Smita Das, psiquiatra de Stanford y presidenta de un consejo sobre adicciones de la Asociación Americana de Psiquiatría.

Das dijo que ha visto vidas destrozadas por el cannabis: personas de éxito que han perdido familias y trabajos. “Se encuentran en una situación en la que no saben cómo han llegado, porque sólo era un porro, sólo era cannabis, y no se suponía que el cannabis les creara adicción”, explicó Das.

Entre los diagnósticos médicos atribuidos a la marihuana figuran la “dependencia del cannabis con trastorno psicótico con delirios” y el síndrome de hiperémesis cannabinoide, una forma de vómito persistente.

Se estima que unas 800,000 personas realizaron visitas a emergencias relacionadas con la marihuana en 2021, según un estudio del gobierno publicado en diciembre de 2022.

Derecho a desintoxicación.

Un padre de Colorado pensó que era cuestión de tiempo para que el cannabis matara a su hijo.

En la primavera de 2021, el adolescente pasó un semáforo en rojo, chocó contra otro auto —resultando heridos él y el otro conductor— y huyó del lugar, según recordó el padre en una entrevista.

En los restos del accidente, el padre encontró porros, envases vacíos de un concentrado de THC de alta potencia conocido como “wax” y un vaporizador de THC.

En el teléfono móvil de su hijo descubrió mensajes de texto y decenas de referencias al “dabbing” y a la hierba. El adolescente dijo que había estado fumando antes del accidente y que intentó suicidarse.

Semanas después, la policía ordenó su ingreso involuntario en un hospital para una evaluación psiquiátrica. Según un informe policial, creía que lo perseguían francotiradores de un cártel de drogas.

El médico que evaluó al adolescente le diagnosticó “abuso de cannabis”.

“Deja de consumir dabs o wax, ya que pueden volverte extremadamente paranoico”, escribió el médico. “Vete directamente al programa de desintoxicación que elijas”.

Según el relato del padre, en los dos últimos años el adolescente sufrió varias retenciones involuntarias, docenas de encuentros con la policía, repetidos encarcelamientos y una serie de estadías en centros de tratamiento hospitalario.

A veces parecía fuera de la realidad, y enviaba mensajes de texto diciendo que Dios le hablaba y le daba superpoderes.

Los daños también fueron económicos. Los reclamos al seguro médico por su tratamiento ascendieron a casi $600,000 y los gastos de la familia llegaron a casi $40,000 hasta febrero.

En las entrevistas para este artículo, el padre habló bajo condición de anonimato para no perjudicar la recuperación de su hijo.

Está convencido de que la enfermedad mental de su hijo fue el resultado del consumo de drogas. Dijo que los síntomas remitían cuando su hijo dejaba de consumir THC y volvían cuando usaba de nuevo.

Su hijo tiene ahora 20 años, ha dejado la marihuana y le va bien, dijo el padre, y añadió: "No me cabe la menor duda de que el consumo de cannabis fue lo que le causó la psicosis, los delirios y la paranoia".

Regulación estatal desigual

Ahora, el uso médico de la marihuana es legal en 40 estados y el Distrito de Columbia, y el uso recreativo o para adultos es legal en 22 estados más el Distrito de Columbia, según MJBizDaily, una publicación especializada.

Al principio de la pandemia de covid-19, mientras gran parte de Estados Unidos cerró sus negocios, los dispensarios de marihuana siguieron abiertos. Muchos estados los declararon negocios esenciales.

Pero sólo dos estados que permiten el uso para adultos, Vermont y Connecticut, han puesto límites al contenido de THC —30% para la flor de cannabis y 60% para los concentrados de THC— y eximen de los límites a los cartuchos precargados, dijo Gillian Schauer de la Asociación de Reguladores de Cannabis, un grupo de reguladores estatales.

Algunos estados limitan el número de onzas o gramos que los consumidores pueden comprar. Sin embargo, incluso un poco de marihuana puede equivaler a mucho THC, apuntó Rosalie Liccardo Pacula, profesora de políticas de salud, economía y derecho en la Universidad del Sur de California.

Algunos estados sólo permiten el uso médico de productos con bajo contenido de THC; por ejemplo, en Texas, las sustancias que no contienen más de un 0,5% de THC en peso. Y algunos estados exigen etiquetas de advertencia. En Nueva Jersey, los productos de cannabis con más de un 40% de THC deben declarar: "Este es un producto de alta potencia y puede aumentar el riesgo de psicosis".

La normativa sobre marihuana de Colorado tiene más de 500 páginas. Sin embargo, se enfatizan los límites de las protecciones al consumidor: "Este producto se ha producido sin supervisión reglamentaria en materia de salud, seguridad o eficacia".

Determinar las normas adecuadas puede no ser sencillo. Por ejemplo, las etiquetas de advertencia podrían proteger a la industria de la marihuana de su responsabilidad, al igual que hicieron con las empresas tabacaleras durante años. Poner un tope a la potencia podría limitar las opciones de las personas que toman dosis elevadas para aliviar problemas médicos.

En general, en el ámbito estatal, la industria del cannabis ha frenado los esfuerzos reguladores argumentando que unas normas onerosas dificultarían la competencia entre las empresas legítimas y las ilícitas, explicó Pacula.

Pacula y otros investigadores han pedido al gobierno federal que intervenga.

Meses después de terminar su mandato como comisionado de la FDA, Scott Gottlieb hizo un llamamiento similar.

Al quejarse de que los estados habían llegado "muy lejos mientras el gobierno federal permanecía al margen", Gottlieb pidió "un esquema nacional uniforme para el THC que proteja a los consumidores."

Eso fue en 2019 y poco ha cambiado desde entonces.

¿Dónde está la FDA?

La FDA supervisa los alimentos, los medicamentos recetados, los de venta libre y los dispositivos médicos. Regula el tabaco, la nicotina y los vapes de nicotina. Supervisa las etiquetas de advertencia del tabaco. En interés de la salud y la seguridad públicas, también regula los productos botánicos, productos médicos que pueden incluir material vegetal.

Sin embargo, cuando se trata de la marihuana para fumar, los concentrados de THC derivados del cannabis que se vapean o dabean y los comestibles infundidos con THC, la FDA parece estar muy al margen.

La marihuana medicinal que se vende en los dispensarios no está aprobada por la FDA. La agencia no ha avalado su seguridad o eficacia ni ha determinado la dosis adecuada. No inspecciona las instalaciones donde se producen los productos ni evalúa el control de calidad.

La agencia sí invita a los fabricantes a someter los productos del cannabis a ensayos clínicos y a su proceso de aprobación de medicamentos.

El sitio web de la FDA señala que el THC es el ingrediente activo de dos medicamentos aprobados por la FDA para el tratamiento del cáncer. Aparentemente, sólo por eso la sustancia está bajo la jurisdicción de la FDA.

La FDA tiene "todo el poder que necesita para regular de forma mucho más eficaz los productos de cannabis legalizados por los estados", afirmó Lindblom, ex funcionario de la agencia.

Al menos públicamente, la FDA no le ha prestado atención a los concentrados de THC derivados del cannabis o la hierba fumada en porros, sino más bien en otras sustancias: una variante del THC derivada del cáñamo, que el gobierno federal ha legalizado, y un derivado diferente del cannabis llamado cannabidiol o CBD, que se ha comercializado como terapéutico.

"La FDA se ha comprometido a vigilar el mercado, identificar los productos de cannabis que plantean riesgos y actuar, dentro de nuestras competencias, para proteger al público", declaró Courtney Rhodes, vocera de la FDA.

"Muchos, la mayoría de los productos con THC se ajustan a la definición de marihuana, que es una sustancia controlada. La Drug Enforcement Administration (DEA) regula la marihuana en virtud de la Ley de Sustancias Controladas (CSA). Le remitimos a la DEA para preguntas sobre la regulación y aplicación de las disposiciones de la CSA", escribió Rhodes en un correo electrónico.

La DEA, dependiente del Departamento de Justicia, no respondió a las preguntas formuladas para este artículo.

En cuanto al Congreso, quizá su medida más importante haya sido limitar la aplicación de la prohibición federal.

"Hasta ahora, la respuesta federal a las acciones estatales para legalizar la marihuana ha consistido, sobre todo, en permitir que los estados apliquen sus propias leyes sobre la droga", señaló un informe de 2022 del Servicio de Investigación del Congreso.

En octubre, el presidente Joe Biden ordenó al secretario de Salud y Servicios Humanos y al fiscal general que revisaran la postura del gobierno federal respecto a la marihuana: si debería seguir clasificada entre las sustancias más peligrosas y estrictamente controladas.

En diciembre, Biden firmó un proyecto de ley que ampliaba la investigación sobre la marihuana y obligaba a las agencias federales a estudiar sus efectos. La ley dice que las agencias tienen un año para publicar sus conclusiones.

Algunos defensores de la marihuana dicen que el gobierno federal podría desempeñar un papel más constructivo.

"La NORML no opina que el cannabis sea inocuo, sino que la mejor forma de mitigar sus riesgos potenciales es mediante la legalización, la regulación y la educación pública", afirmó Paul Armentano, subdirector del grupo antes conocido como Organización Nacional para la Reforma de las Leyes sobre la Marihuana (NORML).

"Los productos tienen que someterse a pruebas de pureza y potencia", añadió, y "el gobierno federal podría ejercer cierta supervisión en la concesión de licencias a los laboratorios que prueban esos productos".

Mientras tanto, según Coleman, asesor de la Asociación Nacional de la Industria del Cannabis, los estados se quedan "teniendo que actuar como si fueran USDA + FDA + DEA, todo al mismo tiempo".

¿Y dónde deja eso a los consumidores? Algunos, como Wendy E., jubilada en sus 60 años, luchan contra los efectos de la marihuana.

Wendy, que habló con la condición de que no se revelara su nombre, empezó a fumar marihuana en la secundaria en los años 70 y la convirtió en su estilo de vida durante décadas.

Luego, cuando su estado la legalizó, la compró en dispensarios "y enseguida me di cuenta de que la potencia era mucho mayor que la que yo había consumido tradicionalmente", contó. "Parecía haber aumentado de manera exponencial".

En 2020, explicó, la marihuana legal —mucho más fuerte que la hierba ilícita de su juventud— la llevó a obsesionarse con el suicidio.

Antes, la mujer que se define como "hippie de la madre tierra" encontraba camaradería pasando un porro con sus amigos. Ahora asiste a reuniones de Marihuana Anónimos, con otras personas que se recuperan de esta adicción.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The decades-old system Texas foster care officials use to track and monitor the health records of the nearly 20,000 children in their custody is both outdated and unreliable — so much so, advocates say, that children have been harmed or put at risk. And those deficiencies persist despite a 2015 order by a federal judge that state leaders fix the system’s deficiencies.

“The frustration with IMPACT is well known,” said Texas state Rep. Gene Wu, a Democrat from Houston, referring to the aging software.

That frustration, he added, is felt widely, from caseworkers to the court system, and boils down to a simple reality: IMPACT, Information Management Protecting Adults and Children in Texas, has been in place since 1996. It was designed to be a secure location for foster children’s records, including their health records and histories of neglect and abuse. But it doesn’t allow such information to be easily added by or shared among state and local health agencies, Medicaid, and even health care providers for the foster children in Texas’ care. Without that ability, children’s medical needs are getting lost in transit. After all, foster kids tend to move from place to place, home to home, and doctor to doctor.

A report released this year by court-appointed monitors is full of harrowing stories and frightening missteps. For instance, in January 2022, a residential treatment center lost track of a 16-year-old boy’s medications. The supply ran out but the center “didn’t realize it.” The boy, who had a history of suicidal ideation, had to undergo an emergency psychiatric consult.

The report also told the story of a foster child who had to stay in a Dallas hotel because caseworkers were unable to find her a family. But no one knew she had prescription drugs in her backpack. When she was left alone in her room, she swallowed a handful of pills. She was taken to a behavioral hospital. As of last September, she was in juvenile detention.

Such accounts, and the concerns they trigger about the state’s broken foster care system, have begun to find traction this legislative session.

The state’s Department of Family and Protective Services, for instance, which oversees the system, has been called in for a series of status hearings regarding its overall progress. Those involved say lasting improvement has to start with modernizing DFPS’ technological infrastructure, but whether their pleas will be met with action is unclear.

Making matters more frustrating for caseworkers is that the federal government in 2015 introduced a new set of regulatory requirements. States could use them to build a framework and become part of a national network that, from the federal view, would help states better track foster kids and their health care needs. Texas, however, is one of four states that has so far opted against using it.

The state now finds itself in the unprecedented situation of having a budget surplus of $32.7 billion, and DFPS is bidding to snag some of that windfall. During an appropriations meeting in February, commissioner Stephanie Muth said that priorities for any such allocation would include building community-based care teams and increasing pay to boost employee retention. The department isn’t planning to replace or make sweeping changes to IMPACT anytime soon.

That’s despite the fact that IMPACT is older than Google — and has had far fewer updates.

Marissa Gonzales, DFPS media relations director, said that when states were given the option to adopt the new federal standards — which incorporated modern technology to enable data to be shared between systems — the agency opted out because they found the requirements “quite restrictive.” On the table now, however, is a federal offer to cover half the cost of transitioning, she said, adding that the agency is “talking to other states about their experiences, and evaluating our own needs, before deciding next steps.”

According to a report by think tank Texas 2036 and the Texas Alliance of Child and Family Services, transitioning to the new program would cost the state $80 million. It said the state had already spent more than $80 million since 2015 to maintain its current system.

One of the biggest concerns of caseworkers is that IMPACT isn’t capable of supporting data-sharing, also known as interoperability, and flagging potential problems, such as when doctors separately prescribe medications that are dangerous when taken together. This is critical, because foster children are prescribed psychotropic drugs to treat mental health disorders at more than four times the rate of other children on Medicaid.

But without such a safety net, the responsibility falls to the caseworker.

“You wouldn’t really expect a CPS worker to have advanced knowledge of psychotropic medications” and which ones children can and cannot take together safely, said Tara Green, co-founder and executive director of the Foster Care Advocacy Center in Houston. But caseworkers have saved children’s lives by catching dangerous medication pairings, she said.

On several occasions, Green said, a caseworker has raised a concern about a child’s medications and a psychiatrist has confirmed that if the issue wasn’t caught then, “this kid would have had a heart attack in the next week or so.”

Scores of children in the past few years have died while in the state’s care, with most of the deaths attributed to preexisting medical conditions — disorders that, more often than not, require specialized care and treatments.

Asked during a House committee hearing about the timing of a modernization project, Muth seemed to suggest it would be a longer-range fix. “It would not be a process that takes a biennium or two, and you’d have to plan for that,” she said. “So, I still think we’re talking about down the road.”

But Wu told KFF Health News that putting off even starting such an upgrade will make things worse. The system will “probably already be out-of-date” by the time it’s ready, he said. That’s why “it always feels like we’re in a catch-up mode,” he added.

As it stands, caseworkers have heavy client loads and spend much of their day driving to visits with children who are scattered across counties. But IMPACT isn’t accessible on their mobile devices. That means they often end up transferring paper notes into the program when they return to the office. On top of that, it takes several steps to make a single entry, and the system is prone to freezing.

“All the data that we’re relying on to tell us about the lives of these kids, it has to be taken with a grain of salt,” said Meredith Parekh, the supervising attorney of Disability Rights Texas’ foster care team. “Your data is only as good as the ability of the caseworker to keep up with all of that, and they’re trying to juggle so many things.”

Texas’ foster system has been under intense pressure since a federal lawsuit was filed against it in 2011 for “leaving many thousands of children to be harmed while in the state’s care,” the complaint reads. U.S. District Judge Janis Graham Jack wrote in a scathing 260-page 2015 ruling that the system “shocks the conscience.” More recently, during a January status hearing, Jack scolded the foster care agency, saying children “come into your care with great needs. I just don’t want them going out of your care with even greater needs, which is what has been happening.”

As part of her ruling, Jack ordered a list of corrections the state agency must make, including hiring more caseworkers to reduce caseloads, stopping the placing of children in foster group homes that lack 24-hour supervision, and tracking child-on-child abuse.

In the eight years since, some progress has been made. For instance, according to the state, caseloads have been reduced, from a daily average of 17 children per caseworker in 2015 — which exceeded the national recommendation of 12 to 15 children per worker — to a daily average of 11 at the beginning of 2023.

But caseworkers say updating the foster care system’s technology would provide overall support for the care children receive, rather than placing band-aids on issues.

The new records system would “make it easier to track everything about that kid,” said Hope Osborn, the policy and advocacy manager at Texas 2036, since a variety of agencies would have access to that child’s data, and the “more eyes on that kid, the better.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).