A new study by investigators from Mass General Brigham demonstrates that large language models (LLMs), a type of generative AI, may help reduce physician workload and improve patient education when used to draft replies to patient messages. The study also found limitations to LLMs that may affect patient safety, suggesting that vigilant oversight of LLM-generated communications is essential for safe usage. Findings, published in Lancet Digital Health, emphasize the need for a measured approach to LLM implementation.
Rising administrative and documentation responsibilities have contributed to increases in physician burnout. To help streamline and automate physician workflows, electronic health record (EHR) vendors have adopted generative AI algorithms to aid clinicians in drafting messages to patients; however, the efficiency, safety and clinical impact of their use had been unknown.
Generative AI has the potential to provide a ‘best of both worlds’ scenario of reducing burden on the clinician and better educating the patient in the process. However, based on our team’s experience working with LLMs, we have concerns about the potential risks associated with integrating LLMs into messaging systems. With LLM-integration into EHRs becoming increasingly common, our goal in this study was to identify relevant benefits and shortcomings.”
Danielle Bitterman, MD, corresponding author, faculty member in the Artificial Intelligence in Medicine (AIM) Program at Mass General Brigham and physician in the Department of Radiation Oncology at Brigham and Women’s Hospital
For the study, the researchers used OpenAI’s GPT-4, a foundational LLM, to generate 100 scenarios about patients with cancer and an accompanying patient question. No questions from actual patients were used for the study. Six radiation oncologists manually responded to the queries; then, GPT-4 generated responses to the questions. Finally, the same radiation oncologists were provided with the LLM-generated responses for review and editing. The radiation oncologists did not know whether GPT-4 or a human had written the responses, and in 31% of cases, believed that an LLM-generated response had been written by a human.
On average, physician-drafted responses were shorter than the LLM-generated responses. GPT-4 tended to include more educational background for patients but was less directive in its instructions. The physicians reported that LLM-assistance improved their perceived efficiency and deemed the LLM-generated responses to be safe in 82.1 percent of cases and acceptable to send to a patient without any further editing in 58.3 percent of cases. The researchers also identified some shortcomings: If left unedited, 7.1 percent of LLM-generated responses could pose a risk to the patient and 0.6 percent of responses could pose a risk of death, most often because GPT-4’s response failed to urgently instruct the patient to seek immediate medical care.
Notably, LLM-generated/physician-edited responses were more similar in length and content to LLM-generated responses versus the manual responses. In many cases, physicians retained LLM-generated educational content, suggesting that they perceived it to be valuable. While this may promote patient education, the researchers emphasize that overreliance on LLMs may also pose risks, given their demonstrated shortcomings.
The emergence of AI tools in health has the potential to positively reshape the continuum of care and it is imperative to balance their innovative potential with a commitment to safety and quality. Mass General Brigham is leading the way in responsible use of AI, conducting rigorous research on new and emerging technologies to inform the incorporation of AI into care delivery, workforce support and administrative processes. Mass General Brigham is currently leading a pilot integrating generative AI into the electronic health record to draft replies to patient portal messages, testing the technology in a set of ambulatory practices across the health system.
Going forward, the study’s authors are investigating how patients perceive LLM-based communications and how patients’ racial and demographic characteristics influence LLM-generated responses, based on known algorithmic biases in LLMs.
“Keeping a human in the loop is an essential safety step when it comes to using AI in medicine, but it isn’t a single solution,” Bitterman said. “As providers rely more on LLMs, we could miss errors that could lead to patient harm. This study demonstrates the need for systems to monitor the quality of LLMs, training for clinicians to appropriately supervise LLM output, more AI literacy for both patients and clinicians, and on a fundamental level, a better understanding of how to address the errors that LLMs make.”
Source:
Journal reference:
Chen, S., et al. (2024) The effect of using a large language model to respond to patient messages. The Lancet Digital Health. doi.org/10.1016/S2589-7500(24)00060-8.
Grocery stores, airports and beaches aren’t great places to have telehealth visits with your endocrinologist. But home can be one of the best locations, giving a doctor helpful insights into a patient’s home environment, which can positively impact their care.
This is just one finding shared in a new study published this week in The Journal of Clinical Diabetes.
Researchers interviewed clinicians and staff who provide diabetes care through telehealth across four University of California academic medical centers: UC Davis Health, UCSF Health, UCLA Health and UC San Diego Health. Researchers asked open-ended questions to learn how telehealth is used, challenges faced, helpful practices and plans for the future.
These are critical and timely questions since telehealth remains an important way to provide care in the wake of the COVID-19 pandemic. But there is limited data about how to optimize it for specific types of care. We asked the people who have the most experience in this area to identify best practices which can be used, further studied, and refined moving forward.”
Stephanie Crossen, UC Davis pediatric endocrinologist and senior author of the study
The study suggests several important strategies to improve telehealth operations:
Dedicated staff support is essential to obtain data from patients’ devices (like remote glucose monitors) ahead of telehealth visits. This can improve access to care for individuals with limited digital literacy, save clinician time during visits and prevent unnecessary rescheduling of appointments.
Efficient workflows around scheduling follow-up visits are needed to ensure people don’t experience lapses in care.
Finding the best ways to facilitate team-based diabetes care is key. For a diabetes management telehealth visit, this may include a nurse, dietitian, social worker, pharmacist or educator, in addition to the primary clinician. It is important to create workflows that support this effort.
Interviewees also said telehealth visits can provide a good opportunity to review and discuss the impact of the home environment on diabetes self-care. Through screen sharing, clinicians can also review trends in a patient’s glucose data and discuss daily management successes or challenges.
Finally, those interviewed also noted the need for clear patient guidelines about appropriate timing and physical setting for joining telehealth visits to make them efficient and effective. For example, visits while driving or at a large group event were not advised.
I hope the findings of our study will spark discussion around how we can optimize telehealth and take advantage of its unique capabilities to improve patient care, rather than trying to replicate the in-person visit.”
Sarah Haynes, assistant professor from the UC Davis Department of Pediatrics and lead author of the study
Other study authors are Miriam Sarkisian of the UC Davis Center for Health and Technology; Aaron Neinstein and Polly Teng of UCSF’s Department of Medicine; Jenise Wong of UCSF’s Department of Pediatrics; and James Marcin of UC Davis Department of Pediatrics.
This study was supported by a research award from the Children’s Miracle Network at UC Davis. Crossen also receives support from the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health (NIH) through grant number K23DK125671.
Haynes, S. C., et al. (2024) From Surviving to Thriving: A Qualitative Study of Adapting Telehealth Systems for Specialty Diabetes Care Across Four California Medical Centers. Clinical Diabetes. doi.org/10.2337/cd23-0108.
Nearly a quarter of adults disenrolled from Medicaid in the past year say they are now uninsured, according to a survey released Friday that details how tens of millions of Americans struggled to retain coverage in the government insurance program for low-income people after pandemic-era protections began expiring last spring.
The first national survey of adults whose Medicaid eligibility was reviewed during the unwinding found nearly half of people who lost their government coverage signed back up weeks or months later — suggesting they should never have been dropped in the first place.
While 23% reported being uninsured, an additional 28% found other coverage — through an employer, Medicare, the Affordable Care Act’s insurance marketplace, or health care for members of the military, the survey by KFF found.
“Twenty-three percent is a striking number especially when you think about the number of people who lost Medicaid coverage,” said Chima Ndumele, an associate professor of health policy at the Yale University School of Public Health.
Going without insurance even for a short period of time can lead people to delay seeking care and leave them at financial risk when they do.
Seven in 10 adults who were disenrolled during the unwinding process say they became uninsured at least temporarily when they lost their Medicaid coverage.
Adrienne Hamar, 49, of Plymouth Meeting, Pennsylvania, said she struggled to enroll in an Affordable Care Act marketplace plan this winter after the state informed her that she and her two children no longer qualified for Medicaid. They had been enrolled since 2020. She said phone lines were busy at the state’s marketplace and she couldn’t complete the process online.
Hamar, who works as a home health aide, and her children were uninsured in March. But since April 1, they’ve been enrolled in a marketplace plan that, with the help of government subsidies, costs $50 a month for the family.
“I was very relieved,” she said. Unsure of their insurance status, Hamar said, her 23-year-old daughter delayed getting a dental checkup.
Hamar’s struggles were common, the survey found.
Of adults enrolled in Medicaid before the unwinding, about 35% who tried to renew their coverage described the process as difficult, and about 48% said it was at least somewhat stressful.
About 56% of those disenrolled say they skipped or delayed care or prescriptions while attempting to renew their Medicaid coverage.
“People’s current insurance status is likely to be very much in flux, and we would expect at least some of the people who say they are currently uninsured to reenroll in Medicaid — many say they are still trying — or enroll in other coverage within a short period of time,” said Jennifer Tolbert, a co-author of the KFF report and the director of KFF’s State Health Reform and Data Program.
The survey didn’t include children, and the KFF researchers said their findings therefore couldn’t be extrapolated to determine how the Medicaid unwinding has affected the overall U.S. uninsured rate, which hit a record low of 7.7% in early 2023. Nearly half of enrollees in Medicaid and the related Children’s Health Insurance Program are children.
The unwinding, in which states are reassessing eligibility for Medicaid among millions of Americans who enrolled before or during the pandemic and dropping those who no longer qualify or did not complete the renewal process, won’t be completed until later this year. Enrollment in Medicaid and CHIP grew to a record of nearly 94.5 million in April of last year, three years after the federal government prohibited states from cutting people from their rolls during the covid-19 public health emergency.
Nationally, states have disenrolled about 20 million people from Medicaid in the past year, most of them for procedural reasons such as failure to submit required paperwork. That number is expected to grow, as states have a few more months to redetermine enrollees’ eligibility.
Among adults who had Medicaid prior to the start of the unwinding, 83% retained their coverage or reenrolled, while 8% found other insurance and 8% were uninsured. The share left uninsured was larger in states that have not expanded Medicaid under the ACA (17%) than in states that have (6%). Forty states have expanded Medicaid to cover everyone with an income under 138% of the federal poverty rate, or $31,200 for a family of four this year.
The KFF survey found that nearly 1 in 3 disenrolled adults discovered only when they sought health care — such as going to a doctor or a pharmacy — that they had been dropped from Medicaid.
Indira Navas of Miami found out that her 6-year-old son, Andres, had been disenrolled from Florida’s Medicaid program when she took him to a doctor appointment in March. She had scheduled Andres’ appointment months in advance and is frustrated that he remains uninsured and his therapy for anxiety and hyperactivity has been disrupted.
Navas said the state could not explain why her 12-year-old daughter, Camila, remained covered by Medicaid even though the children live in the same household with their parents.
“It doesn’t make sense that they would cover one of my children and not the other,” she said.
Kate McEvoy, executive director of the National Association of Medicaid Directors, said the sheer volume of millions of people being redetermined for eligibility has overwhelmed some state call centers trying to support enrollees.
She said states have tried many ways to communicate with enrollees, including through public outreach campaigns, text, email, and apps. “Until the moment your coverage is at stake, it’s hard to penetrate people’s busy lives,” she said.
The KFF survey, of 1,227 adults who had Medicaid coverage in early 2023 prior to the start of the unwinding on April 1, 2023, was conducted between Feb. 15, 2024, and March 11, 2024. The margin of sampling error was plus or minus 4 percentage points.
KFF Health News correspondent Daniel Chang contributed to this article.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
Federal lawmakers face a year-end deadline to solidify or scuttle an array of covid-era payment changes for telehealth services that include allowing people to stay in their homes to see a doctor or therapist.
During the hearing in early March, Wenstrup and other House members offered personal anecdotes on how telehealth, home visits, and remote monitoring helped their patients, relatives, and constituents. Wenstrup, a Republican from Ohio who is also a podiatric surgeon and a retired Army reservist, told the audience: “Patients are less anxious and heal better when they can be at home.”
Most of the proposals focus on how Medicare covers telehealth services. But the rules affect patients on all types of insurance plans because typically private insurers and some government programs follow Medicare’s example. Without congressional action, virtual health care services like audio-only calls or meeting online with specialty doctors — such as an occupational therapist — could end. The bills would also continue to allow rural health clinics and other health centers to offer telehealth services while waiving a requirement for in-person mental health visits.
Telehealth use ballooned in the early months of the covid-19 pandemic and grew into a household term. The practice has become a popular issue for lawmakers on both sides of the aisle.
In one U.S. Census Bureau survey conducted from April 2021 to August 2022, Medicare and Medicaid enrollees reported using telehealth visits the most — 26.8% and 28.3%, respectively. The survey of nearly 1.2 million adults also found that Black patients and those earning less than $25,000 reported high rates of telehealth use. Notably, people of color were more likely to use audio-only visits.
Ensuring access to telehealth services “is the best public policy,” said Debbie Curtis, a vice president of McDermott+Consulting, a Washington, D.C.-based health care lobbying firm. “It’s the best business outcome. It’s the best patient care outcome.”
But it’s a presidential election year and Congress is a “deadline-driven organization,” Curtis said. She expects that Congress will be “kicking the can” past the November election.
Kyle Zebley, senior vice president of public policy at the American Telemedicine Association who also lobbies on Capitol Hill, said Congress “might well be in that lame-duck period.” “This is no way to run a health care system on a popular bipartisan issue,” he said.
In January, lawmakers — including senators from Mississippi and South Dakota — sent a letter to the Biden administration urging the White House to work quickly with Congress to ensure payments continue for Medicare patients who use telehealth, “especially for rural and underserved communities.”
Maya Sandalow, a senior policy analyst for the Bipartisan Policy Center, a Washington, D.C.-based think tank, said lawmakers and policymakers are likely to consider a temporary extension of the payments rather than permanent changes.
“Research is still coming out that covers more recent years than the acute effects of the pandemic,” Sandalow said. The center expects to release policy recommendations in the coming months.
Questions being considered include which kind of health care services are best for audio-only and video visits. Sandalow said researchers are also weighing how telehealth can “expand access to affordable, high-quality care while ensuring in-person options remain for patients.”
In North Dakota, Sanford Health’s David Newman said virtual care is often the only way some of his patients in the western part of the state can get sub-specialty care, such as with behavioral health.
Newman, an endocrinologist and Sanford’s medical officer of virtual care, said 10% to 20% of his patients are seen virtually during the summer, as compared with about 40% in the winter months because “the weather can be so bad” that roads are impassable.
In winters past, Newman would sit around “doing nothing for a day” because patients couldn’t visit him. Now, he has a full clinic using telehealth technology.
“I tell my patients that if you can make a restaurant reservation or if you can order a pizza online, you can do a virtual visit,” Newman said.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
Covering the American health care system means we tell some scary stories. This episode of “An Arm and a Leg” sounds like a real horror movie.
It uses one of Hollywood’s favorite tropes: machines taking over. And the machines belong to the private health insurance company UnitedHealth Group.
Host Dan Weissmann talks to Stat News reporter Bob Herman about his investigation into Medicare Advantage plans that use an algorithm to make decisions about patient care. The algorithm is owned by a subsidiary of UnitedHealth Group.
Herman tells Weissmann that some of UnitedHealth’s own employees say the algorithm creates a “moral crisis” in which care is unfairly denied.
Scary stuff! Such reporting even has caught the eye of powerful people in government, putting Medicare Advantage plans under scrutiny.
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.
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 this is kind of a horror story. But it’s not quite the kind of story it might sound like at first.
Because at first, it might sound like a horror story about machines taking over, making all the decisions– and making terrible, horrifying choices. Very age-of-Artificial Intelligence.
But this is really a story about decisions made by people. For money.
It’s also kind of a twofer sequel– like those movies that pit two characters from earlier stories against each other. Like Godzilla vs King Kong, or Alien vs Predator.
Although in this case, I’ve gotta admit, the two monsters are not necessarily fighting each other.
Let’s get reacquainted with them.
On one side, coming back from our very last episode, we’ve got Medicare Advantage: This is the version of Medicare that’s run by private insurance companies.
It’s got a bright and appealing side, compared to the traditional Medicare program run by the federal government, because: It can cost a lot less, month to month — saving people money on premiums. And it often comes with extra benefits, like dental coverage, which traditional Medicare doesn’t offer. [I know.]
But Medicare Advantage can have a dark side, which is basically: Well, you end up dealing with private insurance companies for the rest of your life. You need something — a test, a procedure, whatever — they might decide not to cover it.
Which can be scary.
Our other returning monster — am I really calling them a monster? — well, last time we talked about them, in 2023, we had an expert calling them a behemoth. That’s United HealthGroup. You might remember, they’re not only one of the biggest insurance companies
— and maybe not-coincidentally the very biggest provider of Medicare Advantage plans —
they’ve also got a whole other business– under the umbrella name Optum. And Optum has spent the last bunch of years buying up a gazillion other health care companies of every kind.
That includes medical practices — they employ more doctors than anyone else, by a huge margin. It includes surgery centers, and home-health companies, and every kind of middleman company you can imagine that works behind the scenes — and have their hands in a huge percentage of doctor bills and pharmacy visits.
A few years ago, United bought a company called NaviHealth, which provides services to insurance companies that run Medicare Advantage plans.
NaviHealth’s job is to decide how long someone needs to stay in a nursing home, like if you’re discharged from a hospital after surgery, but you’re not ready to go home yet.
And the horror story– the stories, as dug up by reporters — starts after United bought NaviHealth.
And according to their reports, it involves people getting kicked out of those nursing homes who aren’t ready to go home.
People getting sent home who can’t walk up the stairs in their house. Who can’t walk at all. Who are on feeding tubes. People who NaviHealth’s own employees are saying, “Wait. This person isn’t ready to go home.”
But their new bosses have told them: You’re not really making these decisions anymore.
This is where machines do enter the picture.
NaviHealth’s distinctive offering has always been its proprietary algorithm– an algorithm that makes predictions about how long any given patient might need to stay.
Before United bought the company, that algorithm was used as a guide, a first-guess. Humans weighed in with their own judgment about what patients needed.
After United bought the company, people inside have told reporters, that changed: The new owners basically told their employees, If the algorithm says someone can go home after x days, that’s when we’re cutting them off.
Like pretty much any horror movie, this story’s got people running around trying to tell everyone: HEY, WATCH OUT! THERE’S SOMETHING BIG AND DANGEROUS HAPPENING HERE.
And in this case, they’ve actually gotten the attention of some people who might have the power to do something about it. Now, what those people will do? We don’t know yet.
And, by the way: Yes, I said at the end of our last episode that we’d be talking about Medicaid this time around. That’s coming! But for now, strap in for this one.
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 challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful.
So. I said that, like every horror movie, this one has people who are seeing what’s going on and are trying to warn everybody?
Like those movies, we’re gonna follow one of those people, watch them discover the problem, see how deep it goes, and start ringing alarm bells. Let’s meet our guy.
Bob Herman: My name is Bob Herman. I’m a reporter at STAT News
Dan: Stat is an amazing medical news publication. Bob covers the business of medicine there. Bob started working on this story in November 2022, after talking to a source who runs nursing homes. Bob’s source was complaining about Medicare Advantage.
Bob Herman: There were a lot of payment denials. They just weren’t able to get paid. And just offhandedly, the source mentioned like, um, you know, and they’re attributing everything to this algorithm. This algorithm said, You know, only 17 days for our patients and then time’s up and I went running to Casey Ross
Dan: Casey is a reporter at Stat who focuses on tech and AI in healthcare. Bob said, hey, what do you think of this? Wanna team up?
Bob Herman: And he was hooked.
Dan: They started talking to people who worked at nursing homes, talking to experts, and talking to families. And it was clear: They were onto something.
Bob Herman: It took so many families by surprise to be like, what do you mean we’re going home? The, you know, my husband, my wife, my grandma, my grandpa, they can’t go to the bathroom on their own. Like, what do you? It was just, it was so confusing to people. It seemed like such a, a cold calculation,
Dan: One person they ended up talking with was Gloria Bent. Her husband Gary was sent to a nursing home for rehab after brain surgery for cancer. He was weak. He couldn’t walk. And he had something called “left neglect”: His brain didn’t register that there was a left side of his body. Here’s Gloria testifying before a Senate committee about how — when Gary arrived at the nursing home — the first thing he got was a discharge date. That is…
Gloria Bent: Before the staff of the facility could even evaluate my husband or develop a plan of care, I was contacted by someone who identified themselves as my Navi Health Care Coordinator
Dan: Gloria says when she told the nursing home staff she’d heard from NaviHealth, they groaned. And told her what to expect.
Gloria Bent: I was told that I had just entered a battlefield, that I could expect a series of notices of denial of Medicare payment accompanied by a discharge date that would be two days after I got that notice.
Dan: Yeah, they said she’d get two days notice. Gloria says the nursing home staff told her she’d have 24 hours to appeal each of those, but even if she won, the denials would keep coming. In fact, they said,
Gloria Bent: If we won a couple of appeals, then we could expect that the frequency with which these denials were going to come would increase.
Dan: All of which happened. NaviHealth started issuing denials July 15, 2022, after Gary had been at the home for a month.
Gloria appealed. She told senators what the doctor who evaluated the appeal found: Gary couldn’t walk. He couldn’t even move — like from bed to a chair — without help from two people.. That reviewer took Gloria’s side.
Her husband’s next denial came a week after the first. Gloria won that appeal too. She says the reviewer noted that Gary needed maximum assistance with activities of daily living.
The third denial came four days later, and this time Gloria lost.
Gary came home in an ambulance: As Gloria testified, he couldn’t get into or out of a car without assistance from someone with special training.
And when he got into the ambulance, he had a fever. The next morning, he wound up in another ambulance — headed to a hospital with meningitis. He lost a lot of the functioning he’d picked up at the nursing home.
He died at home a few months later. When Gloria testified in the Senate, all of it was still fresh. She told them that as awful as Gary’s illness and decline had been, the fights with insurance were an added trauma.
Gloria Bent: This should not be happening to families and patients. It’s cruel. Our family continues to struggle with the question that I hear you asking today. Why are people who are looking at patients only on paper or through the lens of an algorithm
making decisions that deny the services judged necessary by health care providers who know their patients.
Dan: Bob Herman calls Gloria’s story heartbreaking, like so many others he’s seen.
And his attention goes to one part of Gloria’s story beyond denial-by-algorithm.
Because: It’s not just one denial. It’s that series of denials. You can appeal, but as Gloria testified, the denials speed up. And you have to win every single time. The company only has to win once.
I mean, unless you’re ready to get a lawyer and take your chances in court– which, in addition to being a major undertaking, also means racking up nursing home bills and legal bills you may never get reimbursed for, while the court process plays out.
Bob Herman: This appeal system is designed in such a way that people will give up. If you have a job, you know, even if you don’t, and you’re, and you’re also trying to take care of a family member, um, it’s a rigorous monotonous process that will chew people up and spit them out and then the people are inevitably going to give up. And I think in some ways insurers know that.
Dan: Going out on a limb to say: I think so too. So Bob and Casey’s first story on NaviHealth came out in March of 2023. They were the characters in the movie who go, “HEY, I THINK THERE’S SOMETHING REALLY BAD HAPPENING HERE.”
And people started paying attention. Like the U.S. Senate. which held that hearing where Gloria Bent told her story.
And like the federal agency that runs Medicare — the Centers for Medicare and Medicaid Services, CMS.
CMS finalized a rule that told insurers: You can’t deny care to people just from using an algorithm.
And something else happened too: Bob and Casey started suddenly getting a lot MORE information.
Bob Herman: We received so many responses from people and it just opened the floodgates for former employees, just patients and family members, just everyone across the board.
Dan: And not just former employees. Current employees. And what they learned was: There was absolutely a strategy at work in how this algorithm was being used. It was strategy some people on the inside didn’t feel good about.
And this strategy got developed after United HealthGroup — and its subsidiary, Optum– bought NaviHealth in 2020. And here’s what NaviHealth employees started telling Casey and Bob about that strategy.
Bob Herman: For some of us, it’s creating this moral crisis. Like we know that we are having to listen to an algorithm to essentially kick someone out of a nursing home, even though we know that they can barely walk 20 feet.
Dan: What Bob and Casey learned from insiders– and how it connects to United’s role as a health care behemoth– that’s next.
This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering healthcare in America. Their reporters do amazing work, and I’m honored to work with them. We’ll have a little more about KFF Health News at the end of this episode.
So, NaviHealth — the company with the algorithm — got started in 2015.. And the idea behind it was to use data to get people home faster from nursing homes if they didn’t actually need to be there.
Because there was a lot of evidence that some people were being kept longer than they needed.
Bob Herman: There is some validity to the idea that there’s, there’s wasteful care in Medicare, like, you know, there’s been cases in the past proving that people stay in a nursing home for way longer than is necessary. And obviously there’s financial incentives for nursing homes to keep people as long as possible.
Dan: Traditional Medicare does have limits on nursing home care — but if you need “post-acute care” — help getting back on your feet after leaving a hospital traditional Medicare pays in full for 20 days– pretty much no questions asked. One of the selling points of Medicare Advantage — like selling points to policy nerds and politicians — was that it could cut waste, by asking those kinds of questions. NaviHealth and its algorithm were designed to help Medicare Advantage plans ask those questions in a smart way.
Bob Herman: There were… a lot of believers within NaviHealth that were like, okay, I think we’re doing the right thing. We’re trying to make sure people get home sooner because who doesn’t want to be at home.
Dan: And as those employees told Bob and Casey: Before United and Optum came in, the algorithm had been there as a guide — a kind of first guess — but not the final word.
NaviHealth has staff people who interact directly with patients. And back in the day, the pre-United day, Bob and Casey learned that those staff could make their own judgments.
Which made sense, because the algorithm doesn’t know everything about any individual case. It’s just making predictions based on the data it has.
Bob Herman: And there was just, just this noticeable change after United and OptiMentor that it felt more rigid. There’s no more variation.
Dan: If the algorithm says you go, you are pretty much going.
Bob Herman: United has said, no, that’s not the case, but obviously these documents and other communications that we’ve gotten kind of say otherwise.
Dan: Because these employees weren’t just talking. They were sharing. Internal memos. Emails. Training materials. All making clear: The company wanted people shipped out on the algorithm’s timetable.
Bob Herman: Documents came in showing that like this was a pretty explicit strategy. You know, UnitedHealth was telling its employees. Listen, we have this algorithm. We think it’s really good. So when it tells you how many, how many days someone should be in a nursing home, stick to it.
Dan: Stick to it or maybe be fired. Bob and Casey got documents — employee performance goals– saying: How close you stick to the algorithm’s recommendations? That’s part of how we’re evaluating your job performance.
Bob Herman: It’s okay. Algorithm said 17 days, you better not really go outside of that because your job is on the line.
Dan: Here’s how closely people were expected to stick to it. In 2022, employee performance goals shared with STAT showed that workers were expected to keep actual time in nursing homes to within three percent of what the algorithm said it should be. Across the board.
So, say you had 10 patients, and the algorithm said they each should get 10 days. That’s 100 days. Your job was to make sure that the total actual days for those patients didn’t go past 103 days.
Then, in 2023, the expectations got more stringent: Stay within one percent of the algorithm’s predictions. 10 patients, the algorithm says 100 days total? Don’t let it get past a hundred and one.
Bob Herman: Like that is, almost nothing. Like what, what, your hands are tied. If you’re that employee, what are you going to do? Are you going to get fired? Are you going to do what you’re told?
Dan: And one person who ended up talking, to did get fired.
Bob Herman: Correct. Yes. Uh, Amber Lynch did get fired And what she said was what we had also heard just more broadly was it, it created this internal conflict, like, Oh my God, what I’m doing doesn’t feel right.
Dan: Amber Lynch was a case manager. She told Bob and Casey about onepatient who couldn’t climb the stairs in his home after knee surgery. But the algorithm said he was ready. Amber’s supervisor said, “Have you asked the nursing home staff if they’ve tried to teach him butt bumping?” Amber grit her teeth and made the suggestion to the rehab director.
Amber Lynch: And she looked at me like I had two heads. She’s like, he is 78 years old. He’s not going to do that. He’s not safe to climb the stairs yet. He’s not doing it. We’re not going to have it butt bump the stairs.
Dan: Amber told Bob and Casey that when she got fired, it was partly for failing to hit the one percent target and partly for being late with paperwork– which she told Bob and Casey she fell behind because her caseload was so heavy.
She wasn’t the only one with that complaint.
Bob and Casey’s story shows another NaviHealth case manager– not named in the story because they’re still on the job — in their home office, struggling to keep up.
That week, they were supposed to work with 27 patients and their families. Gather documents, hold meetings. Another week, shortly before, they’d had 40 patients.
“Do you think I was able to process everything correctly and call everyone correctly the way I was supposed to?” the case manager asked. “No. It’s impossible. No one can be that fast and that effective and capture all of the information that’s needed.”
Bob and Casey watched this case manager fill out a digital form, feeding the algorithm the information it asked for on a man in his 80s with heart failure, kidney disease, diabetes and trouble swallowing, who was recovering from a broken shoulder.
A few minutes later, the computer spat out a number: 17 days.
The case manager didn’t have a lot of time or leeway to argue, but they were skeptical that the algorithm could get that number exactly right based on only the data it had.
And what data is the algorithm working with? What’s it comparing the data on any given patient TO? Bob Herman says that’s a big question.
Bob Herman: It’s something that for sure, like Casey and I, it’s been bothering us. Like, what, how is this whole system? Like, what is it based on? And we were never really given straight answers on that. NaviHealth and Optum and United have said it’s based on millions of patient records over time. The sources of that, it’s, it’s a little unclear, where all that’s coming from.
Dan: Bob and Casey talked with an expert named Ziad Obermeyer, a professor at the University of California Berkeley School of Public Health, who is not anti-algorithm. He actually builds algorithmic tools for decision making in public health.
AND he’s done research showing that some widely-used algorithms just scale up and automate things like racial bias.
He told Bob and Casey: Using an algorithm based on how long other, earlier patients have stayed in a nursing home — that’s not a great idea.
Because people get forced out of nursing homes, in his words, “because they can’t pay or because their insurance sucks.” He said, “So the algorightm is basically learning all the inequalities of our current system.”
And leaving aside that kind of bias, it seems unlikely to Bob that any algorithm could predict exactly what every single patient will need every single time.
No matter how much data it’s got, it’s predicting from averages.
Bob Herman: It reminds me of, like, a basketball game where let’s say someone averages 27 points per game. They don’t have 27 points every single, the game they go out there. It just varies from time to time.
Dan: But the NaviHealth algorithm doesn’t have to be right every time for United to make money using it.
Using it to make decisions can allow United to boost profits coming and going.
Bob Herman: United health and the other insurance companies that use Navi health. Are using this technology to more or less kick people out of nursing homes before they’re ready. And that is the claims denial side where it’s like, okay, let’s save as much money as we can instead of having to pay it to a nursing home.
Dan: And that’s just one side of it. The insurance side. Claims denial. But United isn’t just in the insurance business.
United’s Optum side is in every other part of health care.
Including — in the years since United took over NaviHealth — home health services. The kind of services you’re likely to need when you leave a nursing home.
In 2022, Optum bought one top home health company in what one trade publication called a “monster, jaw-dropping mega-deal” — more than 5 billion dollars. In 2023, Optum made a deal to buy a second mega-provider.
Bob and Casey’s story says NaviHealth’s shortening nursing home stays is integral to United’s strategy for these acquisitions. It does seem to open up new opportunities.
Bob Herman: You’re out of the nursing home because our algorithm said so. Now we’re going to send you to a home health agency or we’re going to send some home health aides into your home. And by the way, we own them.
Dan: Oh, right, because: If you’re in a Medicare Advantage plan, your insurer can tell you which providers are covered.
Bob Herman: So the real question becomes, how much is United potentially paying itself?
Dan: That is: How much might United end up taking money out of one pocket — the health insurance side — and paying itself into another pocket, Optum’s home-health services?
We don’t know the answer to how much United is paying itself in this way, or hoping to. And United has said its insurance arm doesn’t favor its in-house businesses.
But it seems like a reasonable question to ask. Actually, it’s a question the feds seem to be asking.
Optum hasn’t wrapped up its purchase of that second home-health company yet, and in February 2024, the Wall Street Journal and other outlets reported that the U.S. Department of Justice had opened an anti-trust investigation.
And you don’t have to be in a Medicare Advantage plan run by United to get kicked out of a nursing home on an algorithm’s say-so.
Bob Herman says NaviHealth sells its algorithm-driven services to other big insurance companies
He says, put together, the companies that use NaviHealth cover as many as 15 million people — about half of everybody in Medicare Advantage.
Bob Herman: Odds are, if you’re in a Medicare Advantage plan, there’s a, there’s a really good shot that your coverage policies, if you get really sick and need nursing home care, for example, or any kind of post acute care, an algorithm could be at play at some point.
Dan: This is the dark side of Medicare Advantage.
Bob Herman: Everyone loves their Medicare Advantage plan when they first sign up, right? Because it’s offering all these bells and whistles. It’s, here’s a gym membership. It’s got dental and vision, which regular Medicare doesn’t have. And it’s also just, it’s, it’s cheaper. Like, if it’s just from a financial point of view, if, if you’re a low income senior, How do you turn it down? There’s, there’s so many plans that offer like free, there’s no monthly premiums in addition to all the bells and whistles. But Nobody understands the trade offs , When you’re signing up for Medicare and Medicare Advantage, you’re on the healthier side of, of being a senior, right?
Dan: And none of us can count on staying healthy forever. When you sign up for Medicare you’re signing up your future self — whether that’s ten or twenty or more years out. That future you, might really need good medical care.
And at that point, as we explained in our last episode, if Medicare Advantage isn’t working for you, you may not be able to get out of it.
Bob Herman: You could potentially not fully get the care that you need. We shouldn’t assume that, that this couldn’t happen to us because it can.
Dan: So, yeah. Kind of a horror story. But: Unlike some horror movies, when Bob and Casey started publishing their stories, they started getting people’s attention.
We mentioned the new rules from the feds and the senate hearings after Bob and Casey’s first story in March 2023
Later in the year, when Bob and Casey published their story with documents and stories from inside NaviHealth, a class-action lawsuit got filed.
Since then, CMS has said it will step up audits under its new rules.
Bob Herman: There was a memo that CMS sent out to Medicare advantage plans that said, Hey, listen, we’re telling you again, do not deny care solely on any AI or algorithms. Like just don’t do it.
Dan: And in February 2024, the Senate held another hearing.
Here’s Senator Elizabeth Warren at that hearing, saying these CMS rules aren’t enough. We need stronger guardrails.
Elizabeth Warren: Until CMS can verify that AI algorithms reliably adhere to Medicare coverage standards by law, then my view on this is CMS should prohibit insurance companies from using them in their MA plans for coverage decisions. They’ve got to prove they work before they put them in place.
Dan: So people — people with at least some power– are paying some attention.
Bob Herman: I don’t think this is necessarily going to escape. Political scrutiny for a while.
Dan: So, basically, the story isn’t over.
This isn’t one of those horror movies where the monster’s been safely defeated at the end, and everybody just starts cleaning up the mess. And it’s not one where the monster is just on the loose, unleashing the apocalypse.
Because it’s not a movie. There’s no ending. There’s just all of us trying to figure out what’s going on, and what we can maybe do about it.
One last thing: I got a lot of emails after our last episode, where we laid out a lot of information about Medicare Advantage and traditional Medicare. Most of it was along the lines of, Thank you! That was really helpful! Which made me feel really good.
And we got a couple notes about things we could have done better. Especially this: We said Traditional Medicare leaves you on the hook for 20 percent of everything, without an out of pocket limit.
Which is true — but only for Medicare Part B: Doctor visits, outpatient surgeries and tests. Which can add up, for sure.
Medicare Part A — if you’re actually hospitalized — covers most services at 100 percent, after you meet the deductible. In 2024 that’s one thousand, six hundred thirty-two dollars.
Thanks to Clarke Lancina for pointing that out.
There have been a bunch of other, amazing notes in my inbox recently, and I want to say: Please keep them coming.
If you go to arm and a leg show dot com, slash, contact, whatever you type there goes straight to my inbox. You can attach stuff too: documents… voice memos.
Please let me hear from you. That’s arm and a leg show dot com, slash contact.
I’ll catch you in a few weeks.
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 Ellen Weiss.
Adam Raymonda is our audio wizard. Our music is by Dave Weiner and blue dot sessions. Extra music in this episode from Epidemic Sound.
Gabrielle Healy is our managing editor for audience. She edits the first aid kit newsletter.
Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager.
And Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in depth journalism about healthcare in America and a core program at KFF, an independent source of health policy research, polling and journalism.
Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.
And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax exempt donations. You can learn more about INN at INN. org.
Finally, thanks to everybody who supports this show financially– you can join in any time at arm and a leg show dot com, slash, support — and thanks for listening.
“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.
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A 17-year-old boy with shaggy blond hair stepped onto the scale at Tri-River Family Health Center in Uxbridge, Massachusetts.
After he was weighed, he headed for an exam room decorated with decals of planets and cartoon characters. A nurse checked his blood pressure. A pediatrician asked about school, home life, and his friendships.
This seemed like a routine teen checkup, the kind that happens in thousands of pediatric practices across the U.S. every day — until the doctor popped his next question.
“Any cravings for opioids at all?” asked pediatrician Safdar Medina. The patient shook his head.
“None, not at all?” Medina said again, to confirm.
“None,” said the boy named Sam, in a quiet but confident voice.
Only Sam’s first name is being used for this article because if his full name were publicized he could face discrimination in housing and job searches based on his prior drug use.
Medina was treating Sam for an addiction to opioids. He prescribed a medication called buprenorphine, which curbs cravings for the more dangerous and addictive opioid pills. Sam’s urine tests showed no signs of the Percocet or OxyContin pills he had been buying on Snapchat, the pills that fueled Sam’s addiction.
“What makes me really proud of you, Sam, is how committed you are to getting better,” said Medina, whose practice is part of UMass Memorial Health.
The American Academy of Pediatrics recommends offering buprenorphine to teens addicted to opioids. But only 6% of pediatricians report ever doing do, according to survey results.
In fact, buprenorphine prescriptions for adolescents were declining as overdose deaths for 10- to 19-year-olds more than doubled. These overdoses, combined with accidental opioid poisonings among young children, have become the third-leading cause of death for U.S. children.
“We’re really far from where we need to be and we’re far on a couple of different fronts,” said Scott Hadland, the chief of adolescent medicine at Mass General for Children and a co-author of the study that surveyed pediatricians about addiction treatment.
That survey showed that many pediatricians don’t think they have the right training or personnel for this type of care — although Medina and other pediatricians who do manage patients with addiction say they haven’t had to hire any additional staff.
Some pediatricians responded to the survey by saying they don’t have enough patients to justify learning about this type of care, or don’t think it’s a pediatrician’s job.
“A lot of that has to do with training,” said Deepa Camenga, associate director for pediatric programs for the Yale Program in Addiction Medicine. “It’s seen as something that’s a very specialized area of medicine and, therefore, people are not exposed to it during routine medical training.”
Camenga and Hadland said medical schools and pediatric residency programs are working to add information to their curricula about substance use disorders, including how to discuss drug and alcohol use with children and teens.
But the curricula aren’t changing fast enough to help the number of young people struggling with an addiction, not to mention those who die after taking just one pill.
In a twisted, deadly development, drug use among adolescents has declined — but drug-associated deaths are up.
The main culprits are fake Xanax, Adderall, or Percocet pills laced with the powerful opioid fentanyl. Nearly 25% of recent overdose deaths among 10- to 19-year-olds were traced to counterfeit pills.
“Fentanyl and counterfeit pills is really complicating our efforts to stop these overdoses,” said Andrew Terranella, the Centers for Disease Control and Prevention’s expert on adolescent addiction medicine and overdose prevention. “Many times these kids are overdosing without any awareness of what they’re taking.”
Terranella said pediatricians can help by stepping up screening for — and having conversations about — all types of drug use.
He also suggests pediatricians prescribe more naloxone, the nasal spray that can reverse an overdose. It’s available over the counter, but Terranella, who practices in Tucson, Arizona, believes a prescription may carry more weight with patients.
Back in the exam room, Sam was about to get his first shot of Sublocade, an injection form of buprenorphine that lasts 30 days. Sam is switching to the shots because he didn’t like the taste of Suboxone, oral strips of buprenorphine that he was supposed to dissolve under his tongue. He was spitting them out before he got a full dose.
Many doctors also prefer to prescribe the shots because patients don’t have to remember to take them every day. But the injection is painful. Sam was surprised when he learned that it would be injected into his belly over the course of 20-30 seconds.
“Is it almost done?” Sam asked, while a nurse coaches him to breathe deeply. When it was over, staffers joked out loud that even adults usually swear when they get the shot. Sam said he didn’t know that was allowed. He’s mostly worried about any residual soreness that might interfere with his evening plans.
“Do you think I can snowboard tonight?” Sam asked the doctor.
“I totally think you can snowboard tonight,” Medina answered reassuringly.
Sam was going with a new buddy. Making new friends and cutting ties with his former social circle of teens who use drugs has been one of the hardest things, Sam said, since he entered rehab 15 months ago.
“Surrounding yourself with the right people is definitely a big thing you want to focus on,” Sam said. “That would be my biggest piece of advice.”
For Sam, finding addiction treatment in a medical office jammed with puzzles, toys, and picture books has not been as odd as he thought it would be.
He mom, Julie, had accompanied him to this appointment. She said she’s grateful the family found a doctor who understands teens and substance use.
Before he started visiting the Tri-River Family Health Center, Sam had seven months of residential and outpatient treatment — without ever being offered buprenorphine to help control cravings and prevent relapse. Only 1 in 4 residential programs for youth offer it. When Sam’s cravings for opioids returned, a counselor suggested Julie call Medina.
“Oh my gosh, I would have been having Sam here, like, two or three years ago,” Julie said. “Would it have changed the path? I don’t know, but it would have been a more appropriate level of care for him.”
Some parents and pediatricians worry about starting a teenager on buprenorphine, which can produce side effects including long-term dependence. Pediatricians who prescribe the medication weigh the possible side effects against the threat of a fentanyl overdose.
“In this era, where young people are dying at truly unprecedented rates of opioid overdose, it’s really critical that we save lives,” said Hadland. “And we know that buprenorphine is a medication that saves lives.”
Addiction care can take a lot of time for a pediatrician. Sam and Medina text several times a week. Medina stresses that any exchange that Sam asks to be kept confidential is not shared.
Medina said treating substance use disorder is one of the most rewarding things he does.
“If we can take care of it,” he said, “We have produced an adult that will no longer have a lifetime of these challenges to worry about.”
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
Cases of prostate cancer are projected to double from 1.4 million per year in 2020 to 2.9 million per year by 2040, with low- and middle-income countries (LMICs) predicted to see the highest increases in cases, according to The Lancet Commission on prostate cancer which will be launched by a presentation at the European Association of Urology Congress.
The number of annual prostate cancer deaths worldwide is predicted to rise by 85% over the 20-year period, from 375,000 deaths in 2020 to almost 700,000 deaths by 2040. The true numbers will likely be much higher than the recorded figures due to under-diagnosis and missed opportunities for data collection in LMICs.
Most of these deaths are expected to be in LMICs, due to the rising number of cases and increasing mortality rates in these countries. Deaths from prostate cancer have declined in most high-income countries (HICs) since the mid-1990s.
Prostate cancer is already a major cause of death and disability, accounting for 15% of all male cancers. It is the second most common cause of cancer deaths in UK men and the most common form of male cancer in more than half of the world’s countries.
Aging populations and increasing life expectancy will lead to higher numbers of older men in coming years. As the main risk factors for prostate cancer – such as being aged 50 or older and having a family history of the disease – are unavoidable, it will not be possible to prevent the upcoming surge in cases through lifestyle changes or public health interventions.
Professor Nick James, lead author of the Commission, Professor of Prostate and Bladder Cancer Research at The Institute of Cancer Research, London, and Consultant Clinical Oncologist at The Royal Marsden NHS Foundation Trust, said: “As more and more men around the world live to middle and old age, there will be an inevitable rise in the number of prostate cancer cases. We know this surge in cases is coming, so we need to start planning and take action now. Evidence-based interventions, such as improved early detection and education programs, will help to save lives and prevent ill health from prostate cancer in the years to come. This is especially true for low- and middle-income countries which will bear the overwhelming brunt of future cases.”
Global need for new and improved early detection programs
In HICs, screening for prostate cancer often involves the PSA test, a blood test that measures levels of a protein called prostate-specific antigen (PSA). However, PSA tests often detect prostate cancer which may never cause symptoms and needs no treatment. The current approach to prostate cancer diagnosis in the UK and many other HICs relies on ‘informed choice’ PSA testing – when men aged 50 or over with no disease symptoms can request a PSA test from their doctor after a discussion of the risks and benefits. The Commission argues there is evidence to suggest this approach leads to over-testing in low-risk older men but does not increase detection of prostate cancer in younger men at higher risk. The authors also highlight huge variations in the likelihood of men being diagnosed with advanced prostate cancer with the ‘informed choice’ PSA testing strategy, for example The National Prostate Cancer Audit in the UK found that in 2022, 1 in 8 men (12.5%) with prostate cancer are diagnosed with advanced prostate cancer in London, whereas in Scotland more than 1 in 3 (35%) were diagnosed late.
Instead, the authors recommend using MRI scans in combination with PSA testing to screen men at high risk of prostate cancer in HICs, such as those with a family history of the disease, those of African origin and those carrying the BRACA2 mutation. They argue that this approach would both reduce over-diagnosis and over-treatment, while detecting potentially lethal disease. MRI is effective in imaging cancers and can be used to provide information as to whether the disease is aggressive and likely to be life-threatening. However, biopsies are more effective at identifying aggressive cancers, so MRI alone should not be used to investigate men at high risk of disease.
The effectiveness of population-level PSA testing has not been tested in LMICs and there is an urgent need for cancer screening trials in these countries. New approaches to enable earlier diagnosis in LMICs are vital, as most men in these countries present with metastatic cancer – an advanced form of disease where the cancer has spread to other parts of the body, often the bones. Men with late-stage prostate cancer are much less likely to survive for a long period of time than those who are diagnosed early.
“With prostate cancer we cannot wait for people to feel ill and seek help – we must encourage testing in those who feel well but who have a high risk of the disease in order to catch lethal prostate cancer early. Pop-up clinics and mobile testing offer cost-effective solutions that combine health checks and education. In the UK we recently trialled a new innovative outreach programme called The Man Van which provided free health checks – including PSA tests – to high-risk men in London aged 45 and over. By bringing a van with quick and easy testing straight to men at work and in the community, and targeting those who have a higher risk of prostate cancer, we provided thousands of health checks which resulted in almost 100 cancer diagnoses in men who might otherwise have only seen a doctor once their cancer has progressed to a more advanced stage. The mix of education, outreach, testing and referral used in The Man Van trial may also be successful in LMICs and we hope to see similar initiatives rolled out globally to improve early detection of prostate cancer,” said Professor Nick James (also project lead for the ‘Man Van’).
As well as being a major growing challenge, prostate cancer is also an indicator of a wider need to tailor future healthcare to cope with increases in several diseases, as the numbers of men reaching middle and old age increase worldwide. The Commission calls for trials of prostate cancer screening in LMICs to form part of holistic approaches with a broader focus on men’s health.
Raising awareness of advanced prostate cancer and available therapies
There is a need to raise awareness of the dangers and symptoms of metastatic prostate cancer among men and their families in LMICs. Public awareness of the key features of advanced prostate cancer – such as bone pain, caused by metastatic disease – is poor in many LMICs. Similarly, there is generally low public awareness that treatments can prolong survival and decrease suffering – including cheap, effective ones such as hormone therapy – are available in many LMICs. As with early diagnostic capacity, there is a need to scale-up availability and improve access to treatments for advanced disease in LMICs.
Improving education about the disease is critical, and the Commission authors suggest that programs should involve new technologies and channels such as smartphones, social media, and influencers. They highlight Project PINK BLUE, an organization that delivers a range of programs to raise awareness of breast, cervical, and prostate cancer in Nigeria, and provides free cancer screening. Many of Project PINK BLUE’s programs utilize digital technologies and involve well-known public figures and celebrities.
Professor James N’Dow, Chair in Surgery, University of Aberdeen and Founder of Horizons Trust & Horizons Clinic, Gambia, said: “The issue in low- and middle-income countries is that late diagnosis of prostate cancer is the norm. Improved outreach programs are needed to better inform people of the key signs to look out for and what to do next. Implementing these in tandem with investments in cost-effective early diagnostic systems will be key to preventing deaths from prostate cancer as cases inevitably rise with a global aging population.”
He continues, “As well as the obvious direct effects on individual men’s health, rising numbers of cases and deaths from prostate cancer could have huge economic and social impacts on families in LMICs. Men in these countries are very often a family’s main breadwinner, so if they die or become seriously ill, this can lead to families facing major economic hardship. By preparing now for the upcoming surge in prostate cancer cases, with a particular emphasis on improved education and earlier diagnosis programs, many of these harms could be reduced substantially.”
Building capacity to diagnose and treat prostate cancer early in LMICs
Optimal management of prostate cancer requires the availability of specialist staff and infrastructure to support diagnosis, surgery and radiotherapy to treat localized prostate cancer, and radiotherapy and hormone therapy for metastatic disease.
A major barrier to improved prostate cancer care in LMICs is a lack of trained staff and specialist facilities. These shortages are not limited to prostate cancer, and the 2015 Lancet Commission on Surgery found that 9 out of 10 people in LMICs cannot access basic surgical care. [4]
Expanding early diagnostic capabilities in LMICs will increase the rates of detection of early-stage prostate cancer, further increasing demand for surgery and radiotherapy. Urgent measures are therefore needed to build surgical and radiotherapy capacity in these countries. The Commission authors state that establishing regional hubs could provide the infrastructure needed to increase specialist training and improve patient access to radiotherapy and surgery.
For men with metastatic disease, earlier diagnosis and starting hormone therapy earlier will reduce deaths and prevent serious complications like painful spinal cord compression and urinary retention, which can lead to infection and kidney damage.
More research is needed on ethnic inequities in care and survival
The Commission authors highlight the need for more research to better understand prostate cancer in men who are not of White European origin, to enable improved detection and care in these groups. Research and knowledge of prostate cancer is heavily focussed on White European men, and most studies have been done in HICs. However, Black men, especially those of West African descent, have a higher risk of developing prostate cancer than White or Asian men, though the reasons for this are unclear. There is also a higher death rate from prostate cancer among Black men, but it is not known if this is driven by the differences in case rates or by other factors such as differing disease biology or societal factors such as deprivation or racism. More data is needed to identify the driving factors behind these trends.
The Commission authors call for mandatory recording of ethnicity in clinical trials, and that trials should reflect the ethnic mix of the populations being studied to ensure that the findings apply to all groups. The Commission authors also call for trials examining prostate cancer screening, early diagnosis, and treatment in LMICs.
Source:
Journal reference:
James, N. D., et al. (2024) The Lancet Commission on prostate cancer: planning for the surge in cases. The Lancet. doi.org/10.1016/S0140-6736(24)00651-2.
A TMJ patient in Maine had six surgeries to replace part or all of the joints of her jaw.
Another woman in California, desperate for relief, used a screwdriver to lengthen her jawbone daily, turning screws that protruded from her neck.
A third in New York had bone from her rib and fat from her belly grafted into her jaw joint, and twice a prosthetic eyeball was surgically inserted into the joint as a placeholder in the months it took to make metal hinges to implant into her jaw.
“I feel like Mr. Potato Head,” said Jenny Feldman, 50, of New York City, whose medical records show she’s had at least 24 TMJ-related surgeries since she was a teenager. “They’re moving ribs into my face, and eyeballs, and I feel like a toy … put together [by] somebody just tinkering around.”
These are some of the horrors of temporomandibular joint disorders, known as TMJ or TMD, which afflict up to 33 million Americans, according to the National Institutes of Health. Dentists have attempted to heal TMJ patients for close to a century, and yet the disorders remain misunderstood, under-researched, and ineffectively treated, according to an investigation by KFF Health News and CBS News.
Dental care for TMJ can do patients more harm than good, and a few fall into a spiral of futile surgeries that may culminate in their jaw joints being replaced with metal hinges, according to medical and dental experts, patients, and their advocates speaking in interviews and video testimony submitted to the FDA.
TMJ disorders cause pain and stiffness in the jaw and face that can range from discomfort to disabling, with severe symptoms far more common in women. Dentists have commonly treated the disorder with splints and orthodontics. And yet these treatments are based on “strongly held beliefs” and “inadequate research” — not compelling scientific evidence nor consistent results — according to the National Academies of Sciences, Engineering and Medicine, which reviewed decades of research on the topic. The NIH echoes this message, warning that there is “not a lot of evidence” that splints reduce pain and recommends “staying away” from any treatment that permanently changes the teeth, bite, or jaw.
“I would say that the treatments overall have not been effective, and I can understand why,” said Rena D’Souza, director of the NIH’s National Institute of Dental and Craniofacial Research. “We don’t understand the disease.”
For this investigation, journalists with KFF Health News and CBS News interviewed 10 TMJ patients with severe symptoms who said they felt trapped by an escalating series of treatments that began with splints or dental work and grew into multiple surgeries with diminishing returns and dwindling hope.
In every interview, the patients said the TMJ pain worsened throughout their treatment and they regretted some, if not all, of the care they received.
“The grand irony to me is that I went to the doctor for headaches and neck pain, and I’ve had 13 surgeries on my face and jaw, and I still have even worse neck pain,” said Tricia Kalinowski, 63, of Old Orchard Beach, Maine. “And I live with headaches and jaw pain every day.”
TMJ has become an umbrella term for about 30 disorders that afflict roughly 5% to 10% of Americans. Minor symptoms may not require treatment at all, and many cases resolve by themselves over time. Severe symptoms include chronic pain and may limit the ability to eat, sleep, or talk.
In a comprehensive study of TMJ disorders by the national academies, including input from more than 110 patients, experts found that most health care professionals, including dentists, have received “minimal or no training” on TMJ disorders and patients are “often harmed” by “overly aggressive” care and the lack of proven treatments.
Almost 100 years this has been in dentistry, and look at what we have… A whole ton of people pretending they know everything, and we don’t know anything.”
Terrie Cowley, TMJ patient
The American Dental Association, which represents about 160,000 dentists nationwide and establishes guidelines for the profession, declined an interview request. In a written statement, ADA President Linda Edgar said that TMJ disorders are “often managed rather than cured” and that it sees “great potential” in new efforts to research more treatment options.
Terrie Cowley, a longtime TMJ patient who leads the TMJ Association, an advocacy group that has spoken with tens of thousands of patients, said she was so disillusioned with dental care for TMJ that she advises many patients to avoid treatment entirely, potentially for years.
“Almost 100 years this has been in dentistry, and look at what we have,” Cowley said. “A whole ton of people pretending they know everything, and we don’t know anything.”
‘Not taken seriously’
Scientific studies have found that TMJ disorders arise up to nine times as often in women, particularly those in their 20s and 30s, leading to theories that the cause may be linked to reproductive hormones. But a true understanding of TMJ disorders remains elusive.
Kyriacos Athanasiou, a biomedical engineering professor at the University of California-Irvine, said it was because TMJ disorders are more prevalent among women that they were historically dismissed as neither serious nor complex, slowing research into the cause and treatment.
The resulting dearth of knowledge, which is glaring when compared with other joints, has been “a huge disservice” to patients, Athanasiou said. In a 2021 study he co-authored, researchers found that the knee, despite being a much simpler joint, was the subject of about six times as many research papers and grants in a single year than the jaw joint.
D’Souza agreed that TMJ disorders were “not taken seriously” for decades, along with other conditions that predominantly affect women.
“That has been a bias that is really long-standing,” she said. “And it’s certainly affected the progress of research.”
Patients have felt the effect too. In interviews, female patients said they felt patronized or trivialized by male health care providers at some point in their TMJ treatment, if not throughout. Some said they felt blamed for their own pain because they were viewed as too stressed and clenching their jaw too much.
“We desperately need research to find the reasons why more women get TMJ disease,” wrote Lisa Schmidt, a TMJ Association board member, in a 2021 newsletter from the organization. “And surgeons need to stop blaming this condition on women.”
Every time you have a surgery, your pain gets worse… If I could go back in time and go talk to younger Lisa, I would say ‘Run!’”
Lisa Schmidt, TMJ patient
Schmidt, 52, of Poway, California, said she was diagnosed with TMJ disorder in 2000 due to headaches, and an orthodontist immediately recommended her for a splint, braces, and surgery.
After wearing the splint for only three days, Schmidt said, she was in “excruciating pain” and could no longer open her mouth far enough to eat solid food. Schmidt said she spent the next 17 years stuck on a “surgery carousel” with no escape, and eventually was in so much pain she abandoned her career as an aerospace scientist who worked alongside NASA astronauts.
Schmidt said her low point came in 2016. In an attempt to restore bone that had been cut away in prior surgeries, a surgeon implanted long screws into Schmidt’s jaw that protruded downward out of her neck. Schmidt said she was instructed to tighten those screws with a screwdriver daily for about 20 days, lengthening the corners of her jaw to restore the bone that had been lost. It didn’t work, Schmidt said, and she was left in more pain than ever.
“Every time you have a surgery, your pain gets worse,” Schmidt said. “If I could go back in time and go talk to younger Lisa, I would say ‘Run!’”
Lack of sufficient evidence
Many of the shortcomings of TMJ care were laid bare in the 426-page report published by the national academies in March 2020 that received limited public attention amid the coronavirus pandemic. The report’s 18 authors include medical and dental experts from Harvard, Duke, Clemson, Michigan State, and Johns Hopkins universities.
Sean Mackey, a Stanford professor who co-led the team, said it found that patients were often steered toward costly treatments and “pathways of futility” instead of being taught to manage their pain through strategies and therapies with “good evidence.”
“We learned it’s a quagmire,” Mackey said. “There is a perverse incentive in our society that pays more for things we do to people than [for] talking and listening to people. … Some of those procedures, some of those surgeries, clearly are not helping people.”
Among its many findings, the national academies said it has been widely assumed in the field of dentistry that TMJ disorders are caused by a misaligned bite, so treatments have focused on patients’ teeth and bite for more than 50 years. But there is a “notable absence of sufficient evidence” that a misaligned bite is a cause of TMJ disorders, and the belief traces back to “inadequate research” in the 1960s that has been repeated in “poorly-designed studies” ever since, the report states.
Therefore, TMJ treatment that makes permanent changes to the bite — like installing braces or crowns or grinding teeth down — has “no supporting evidence,” according to the national academies report. The NIH warns that these TMJ treatments “don’t work and may make the problem worse.”
Dental splints, the most common TMJ treatment, also known as night guards or mouth guards, are removable dental appliances that are molded to fit over the teeth and can cost hundreds or even thousands of dollars out-of-pocket, according to the TMJ Association. Like most medical devices, splints generally go through the FDA’s 510(k) clearance process, which does not require each splint to be proven effective before it can be sold, according to the agency.
The national academies’ report states that splints produce “mixed results” for TMJ patients, and even when splints succeed at reducing jaw pain it is not understood why they work. Hundreds of splint designs exist, the report states, and some dentists reject research that challenges the use of splints unless it focuses on the specific design they prefer.
“Because of the hundreds of variations in [splint] design, it is unlikely that any study could ever be conducted that will be considered sufficient to a particular dentist with a pre-existing belief about the effectiveness of one appliance,” the report states.
Other treatments fare no better. The FDA has not labeled any drugs specifically for TMJ disorders, and pain medicines can be too weak or addictive to be a long-term solution, according to the TMJ Association. Botox injections may ease pain but have raised concerns about bone loss during animal testing. The NIH warns that minor surgeries that flush the jaw with liquid bring only temporary pain relief and that more complex surgeries should be reserved for severe cases because they have yet to be proved safe or effective in the long term.
To improve care, the national academies called for better education about TMJ disorders across medicine and dentistry and more research funding from the NIH, which has a “ripple effect” on research and training across the nation.
Since the 2020 report, the NIH has launched a TMJ research collaborative and increased annual research funding from about $15 million to about $34 million, D’Souza said. TMJ care was added to the standards that dental schools must teach to be accredited in 2022. The national academies launched an ongoing forum on TMJ disorders last year.
But TMJ funding still pales in comparison to other ailments. The NIH spends billions each year to research deadly diseases, like cancer and heart disease, that also afflict large numbers of Americans. It spends millions more on research of non-life-threatening conditions like arthritis, back pain, eczema, and headaches.
Mackey noted that much of the NIH’s spending is allocated by Congress.
“If Congress comes in and says, ‘We want to devote X amount of money to [TMJ],’ all of the sudden you will see an increase in money,” Mackey said. “So that’s my message to people out there: Raise your voices. Write your legislator.”
Total jaw replacements
Plagued by TMJ symptoms, and after failed treatments, some patients turn to a last resort: replacing their jaw joint with synthetic implants. Surgeons might replace the cartilage disk at the core of the joint or use “total joint replacement surgery” to fasten a metal hinge to the bones of the skull.
But the implants have a harrowing history: Several disk implants were recalled or discontinued in the ’90s due to dangerous failures. The FDA now classifies TMJ implants among its most closely monitored medical devices because the products on the market today can cause “adverse health consequences” if the devices fail, according to the agency’s website.
Two companies, Zimmer Biomet and Stryker, make the only total jaw replacement implants currently sold in the U.S.
Zimmer Biomet, which has made its implant for more than two decades, described it in email statements as “a safe and efficacious solution” for patients who need their jaw joint replaced, either due to TMJ disorders, failed surgeries, injuries, or other ailments. An FDA-mandated study completed in 2017 found about 14% of patients who get the Zimmer Biomet implant require additional surgery or removal within 10 years, said agency spokesperson Carly Pflaum.
Stryker, which in 2021 bought a company that made a total jaw replacement implant and now makes the implant itself, declined to comment. Although the NIH has advised TMJ patients to avoid surgery since at least 2022, Stryker launched a “patient-facing website” for the implant last year and is recruiting surgeons to be added to a “surgeon locator” feature on the site, according to posts on Facebook and LinkedIn.
A study of the Stryker implant’s success rate was mandated by the FDA and completed in 2020, but the agency has yet to make the results public.
D’Souza, the NIH official, said that based on her professional experience, she estimates that most total jaw replacement surgeries are ultimately ineffective.
“The success rate is low,” D’Souza said. “It is not very encouraging.”
Multiple patients provided KFF Health News and CBS News with medical records showing their total jaw replacement implants had to be removed due to malfunction, infection, or previously unknown metal allergies. Several patients said that since their implants were removed months or years ago, they have lived with no hinge in their jaw at all.
Kalinowski, the TMJ patient in Maine, has had portions of her jaw joint replaced six times, including receiving four implants. Her medical records show that the cartilage disk on her right side was replaced in 1986 with an implant that was later recalled and again in 1987 with another that was later discontinued. Her left and right disks were replaced in 1992 with a muscle flap and rib graft, respectively, and her entire right joint was replaced with yet another implant that was later discontinued in 1998. Both joints were replaced again in 2015, her records show.
Since then, Kalinowski said, her artificial jaw has functioned properly, although she remains in pain and cannot move her jaw from side to side. Her mouth hangs open when her face is at rest, and she drinks protein shakes for lunch because it’s easier than struggling with solid food.
But the “worst part,” Kalinowski said, is that her surgeries caused nerve damage on her lower face, and so she has not felt her husband’s kisses since the ’90s.
“If there was one moment in my life I could take back and do over again, it would be that first surgery. Because it set me on a trajectory,” Kalinowski said. “And it never goes away.”
CBS News producer Nicole Keller contributed to this article.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
First, her favorite doctor in Providence, Rhode Island, retired. Then her other doctor at a health center a few miles away left the practice. Now, Piedad Fred has developed a new chronic condition: distrust in the American medical system.
“I don’t know,” she said, her eyes filling with tears. “To go to a doctor that doesn’t know who you are? That doesn’t know what allergies you have, the medicines that make you feel bad? It’s difficult.”
At 71, Fred has never been vaccinated against covid-19. She no longer gets an annual flu shot. And she hasn’t considered whether to be vaccinated against respiratory syncytial virus, or RSV, even though her age and an asthma condition put her at higher risk of severe infection.
“It’s not that I don’t believe in vaccines,” Fred, a Colombian immigrant, said in Spanish at her home last fall. “It’s just that I don’t have faith in doctors.”
The loss of a trusted doctor is never easy, and it’s an experience that is increasingly common.
The stress of the pandemic drove a lot of health care workers to retire or quit. Now, a nationwide shortage of doctors and others who provide primary care is making it hard to find replacements. And as patients are shuffled from one provider to the next, it’s eroding their trust in the health system.
The American Medical Association’s president, Jesse Ehrenfeld, recently called the physician shortage a “public health crisis.”
“It’s an urgent crisis, hitting every corner of this country, urban and rural, with the most direct impact hitting families with high needs and limited means,” Ehrenfeld told reporters in October.
In Fred’s home state of Rhode Island, the percentage of people without a regular source of routine health care increased from 2021 to 2022, though the state’s residents still do better than most Americans.
Hispanic residents and those with less than a high school education are less likely to have a source of routine health care, according to the nonprofit organization Rhode Island Foundation.
The community health centers known as federally qualified health centers, or FQHCs, are the safety net of last resort, serving the uninsured, the underinsured, and other vulnerable people. There are more than 1,400 community health centers nationwide, and about two-thirds of them lost between 5% and a quarter of their workforce during a six-month period in 2022, according to a report by the National Association of Community Health Centers.
Another 15% of FQHCs reported losing between a quarter and half of their staff. And it’s not just doctors: The most severe shortage, the survey found, was among nurses.
In a domino effect, the shortage of clinicians has placed additional burdens on support staff members such as medical assistants and other unlicensed workers.
Their extra tasks include “sterilizing equipment, keeping more logs, keeping more paperwork, working with larger patient loads,” said Jesse Martin, executive vice president of District 1199 NE of the Service Employees International Union, which represents 29,000 health care workers in Connecticut and Rhode Island.
“When you add that work to the same eight hours’ worth of a day’s work you can’t get everything done,” Martin said.
Last October, scores of SEIU members who work at Providence Community Health Centers, Rhode Island’s largest FQHC, held an informational picket outside the clinics, demanding improvements in staffing, work schedules, and wages.
The marketing and communications director for PCHC, Brett Davey, declined to comment.
Staff discontent has rippled through community health care centers across the country. In Chicago, workers at three health clinics held a two-day strike in November, demanding higher pay, better benefits, and a smaller workload.
Then just before Thanksgiving at Unity Health Care, the largest federally qualified health center in Washington, D.C., doctors and other medical providers voted to unionize. They said they were being pressed to prioritize patient volume over quality of care, leading to job burnout and more staff turnover.
The staffing shortages come as community health centers are caring for more patients. The number of people served by the centers between 2015 and 2022 increased by 24% nationally, and by 32.6% in Rhode Island, according to the Rhode Island Health Center Association, or RIHCA.
“As private practices close or get smaller, we are seeing patient demand go up at the health centers,” said Elena Nicolella, RIHCA’s president and CEO. “Now with the workforce challenges, it’s very difficult to meet that patient demand.”
In Rhode Island, community health centers in 2022 served about 1 in 5 residents, which is more than twice the national average of 1 in 11 people, according to RIHCA.
Job vacancy rates at Rhode Island’s community health centers are 21% for physicians, 18% for physician assistants and nurse practitioners, and 10% for registered nurses, according to six of the state’s eight health centers that responded to a survey conducted by RIHCA for The Public’s Radio, NPR, and KFF Health News.
Pediatricians are also in short supply. Last year, 15 pediatricians left staff positions at the Rhode Island health centers, and seven of them have yet to be replaced.
Research shows that some of the biggest drivers of burnout are workload and job demands.
Community health centers tend to attract clinicians who are mission-driven, said Nelly Burdette, who spent years working in health centers before becoming a senior leader of the nonprofit Care Transformation Collaborative of Rhode Island.
These clinicians often want to give back to the community, she said, and are motivated to practice “a kind of medicine that is maybe less corporate,” and through which they can they develop close relationships with patients and within multigenerational families.
So when workplace pressures make it harder for these clinicians to meet their patients’ needs, they are more likely to burn out, Burdette said.
When a doctor quits or retires, Carla Martin, a pediatrician and an internist, often gets asked to help. The week before Thanksgiving, she was filling in at two urgent care clinics in Providence.
“We’re seeing a lot of people coming in for things that are really primary care issues, not urgent care issues, just because it’s really hard to get appointments,” Martin said.
One patient recently visited urgent care asking for a refill of her asthma medication. “She said, ‘I ran out of my asthma medicine, I can’t get a hold of my PCP for refill, I keep calling, I can’t get through,’” Martin said.
Stories like that worry Christopher Koller, president of the Milbank Memorial Fund, a nonprofit philanthropy focused on health policy. “When people say, ‘I can’t get an appointment with my doctor,’ that means they don’t have a usual source of care anymore,” Koller said.
Koller points to research showing that having a consistent relationship with a doctor or other primary care clinician is associated with improvements in overall health and fewer emergency room visits.
When that relationship is broken, patients can lose trust in their health care providers.
That’s how it felt to Piedad Fred, the Colombian immigrant who stopped getting vaccinated. Fred used to go to a community health center in Rhode Island, but then accessing care there began to frustrate her.
She described making repeated phone calls for a same-day appointment, only to be told that none were available and that she should try again tomorrow. After one visit, she said, one of her prescriptions never made it to the pharmacy.
And there was another time when she waited 40 minutes in the exam room to consult with a physician assistant — who then said she couldn’t give her a cortisone shot for her knee, as her doctor used to do.
Fred said that she won’t be going back.
So what will she do the next time she gets sick or injured and needs medical care?
“Well, I’ll be going to a hospital,” she said in Spanish.
But experts warn that more people crowding into hospital emergency rooms will only further strain the health system, and the people who work there.
This article is from a partnership that includes The Public’s Radio, NPR, and KFF Health News.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
The college senior at California State University-San Bernardino worked 60 hours a week at two jobs. She used birth control. Motherhood was not in the plan. Not yet. “I grew up poor. And I don’t want that for my children, like, ever,” she said.
She wanted a medication abortion. It’s a two-step process: one drug taken at a doctor’s office, and another a day later to induce cramping and bleeding and empty the uterus. Gomez didn’t bother going to the university health clinic, thinking it was only for basic health needs.
She ended up driving more than 300 miles and paying hundreds of dollars in medical and travel expenses to obtain a medication abortion. She missed a month of classes, which put her graduation date in jeopardy. She had no idea she was entitled to a free medication abortion right on campus.
An LAist investigation has found that one year after California became the first state to require its public universities to provide abortion pills to students, basic information on where or how students can obtain the medication is lacking and, often, nonexistent.
“I was really upset when I found out,” Gomez told LAist. “I had to really push myself to make that money happen.”
LAist initially found that 11 of 23 CSU campus clinics did not have any information about medication abortion on their clinic websites, nor did they list it as a service offered. Of the University of California’s 10 campuses, eight mentioned medication abortion on their clinic websites. (Five CSU campuses and one UC campus added information after LAist published a version of this article.)
Through conversations with students and faculty at multiple campuses, LAist found there was little information for students to obtain the pills.
“If I had known that, I would have taken advantage of it,” Gomez said. “I spent a lot of time driving around after work, switching schedules, putting my homework on the back burner.”
California legislators in 2019 passed the law that requires all the state’s 33 public university campuses to provide abortion pills. It took effect in January 2023.
“We wanted to make sure that students, female students, had access to this right,” said Connie Leyva, the former Pomona-area state senator who authored the bill.
The legislature created a $10.3 million fund of privately raised money to help universities implement the new law. Each campus received $200,000 in one-time funding to pay for the medication and cover costs such as facility upgrades, equipment, training, telehealth services, and security upgrades.
The funding did not include any requirement that campus clinics inform students the medication was available to them.
Leyva said she doesn’t recall any conversations about “including something on advertising that you could get a medicated abortion on campus.” She said she’s disappointed in the law’s implementation, but not surprised.
“Everything starts at the top. And if the president or chancellor of the university knows they have to offer it, but if they don’t agree that women should have access to abortion services, then they might just think, ‘We’ll leave it off, we don’t have to worry about it,’” Leyva said.
Spokesperson Ryan King said UC President Michael Drake was not available to comment.
“The student communities at each UC campus are unique,” Heather Harper, a spokesperson for UC Health in Drake’s office, wrote in an email. “As a result, communication to students at each location takes different forms and may include website content, flyers, emails, person-to-person conversations or other methods.”
The office of CSU Chancellor Mildred García did not reply to a request for comment.
At Gomez’s San Bernardino campus, abortion as an option was mentioned only in one place: in small letters on a poster inside exam rooms at the health center.
A student wouldn’t see that until they were already waiting for a doctor or nurse.
“We need to work harder if there is a student who needed the service and wasn’t aware that they could access it through us and not have to pay for it,” said Beth Jaworski, executive director of health, counseling, and wellness at CSU-San Bernardino. “But it’s one student. We haven’t been providing the service very long. It’s been just about a year now.”
Medication abortion has since been added to the list of services on the clinic’s website.
Ray Murillo, California State University’s interim assistant vice chancellor of student affairs, said he and other administrative staffers are developing guidance so campuses share the same information “to help in our training efforts for the frontline staff and providers when they’re being asked questions about the service and what we provide.”
Gomez wants more done, including flyers, emails, and social media posts directed at both faculty and students.
“You want to market the football games, you want to market the volleyball games. Why is that important, and abortions are not?” she said.
Gomez did graduate in December 2023, becoming the first person in her family to earn a bachelor’s degree. But she’s angry at her alma mater for keeping the abortion pills a secret.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
