As Medicare Advantage continues to gain popularity among seniors, three Southern California companies are pioneering new types of plans that target cultural and ethnic communities with special offerings and native-language practitioners.
Clever Care Health Plan, based in Huntington Beach, and Alignment Health, based in nearby Orange, both have plans aimed at Asian Americans, with extra benefits including coverage for Eastern medicines and treatments such as cupping and tui na massage. Alignment also has an offering targeting Latinos, while Long Beach-based SCAN Health Plan has a product aimed at the LGBTQ+ community. All of them have launched since 2020.
While many Medicare Advantage providers target various communities with their advertising, this trio of companies appear to be among the first in the nation to create plans with provider networks and benefits designed for specific cultural cohorts. Medicare Advantage is typically cheaper than traditional Medicare but generally requires patients to use in-network providers.
"This fits me better," said Clever Care member Tam Pham, 78, a Vietnamese American from Westminster, California. Speaking to KFF Health News via an interpreter, she said she appreciates the dental care and herbal supplement benefits included in her plan, and especially the access to a Vietnamese-speaking doctor.
"I can always get help when I call, without an interpreter," she said.
Proponents of these new culturally targeted plans say they can offer not only trusted providers who understand their patients' unique context and speak their language, but also special products and services designed for their needs. Asian Americans may want coverage for traditional Eastern treatments, while LGBTQ+ patients might be especially concerned with HIV prevention or management, for example.
Health policy researchers note that Medicare Advantage tends to be lucrative for insurers but can be a mixed bag for patients, who often have a limited choice of providers — and that targeted plans would not necessarily solve that problem. Some also worry that the approach could end up being a new vector for discrimination.
"It's strange to think about commodifying and profiting off people's racial and ethnic identities," said Naomi Zewde, an assistant professor at the UCLA Fielding School of Public Health. "We should do so with care and proceed carefully, so as not to be exploitive."
Still, there's plenty of evidence that patients can benefit from care that is targeted to their race, ethnicity, or sexual orientation.
A November 2020 study of almost 118,000 patient surveys, published in JAMA Network Open, underscored the need for a connection between physician and patient, finding that patients with the same racial or ethnic background as their physicians are more likely to rate the latter highly. A 2022 survey of 11,500 people around the world by the pharmaceutical company Sanofi showed a legacy of distrust in health care systems among marginalized groups, such as ethnic minorities, LGBTQ+ people, and people with disabilities.
Clever Care, founded by Korean American health care executive Myong Lee, aimed from the start to create Medicare Advantage plans for underserved Asian communities, said Peter Winston, the senior vice president and general manager of community and provider development at the company. "When we started enrollments, we realized there is no one ‘Asian,' but there is Korean, Chinese, Vietnamese, Filipino, and Japanese," Winston added.
The company has separate customer service lines by language and gives members flexibility on how and where to spend their allowances for benefits like fitness programs.
Winston said the plan began with 500 members in January 2021 and is now up to 14,000 (still very small compared with mainstream plans). Herbal supplement benefit dollars vary by plan, but more than 200 products traditionally used by Asian clients are on offer, with coverage of up to several hundred dollars per quarter.
Sachin Jain, a physician and the CEO of SCAN Group, said its LGBTQ+ plan serves 600 members.
"This is a group of people who, for much of their lives, lived in the shadows," Jain added. "There is an opportunity for us as a company to help affirm them, to provide them with a special set of benefits that address unmet needs."
SCAN has run into bias issues itself, with some of its employees posting hate speech and one longtime provider refusing to participate in the plan, Jain recounted.
Alignment Health offers a plan targeting Asian Americans in six California counties, with benefits such as traditional wellness services, a grocery allowance for Asian stores, nonemergency medical transportation, and even pet care in the event a member has a hospital procedure or emergency and needs to be away from home.
Alignment also has an offering aimed at Latinos, dubbed el Único, in parts of Arizona, Nevada, Texas, Florida, and California. The California product, an HMO co-branded with Rite Aid, is available in six counties, while in Florida and Nevada, it's a so-called special needs plan for Medicare beneficiaries who also qualify for Medicaid. All offer a Spanish-speaking provider network.
Todd Macaluso, the chief growth officer for Alignment, declined to share specific numbers but said California membership in Harmony — its plan tailored to Asian Americans — and el Único together has grown 80% year over year since 2021.
Alignment's marketing efforts, which include visiting places where prospective members may shop or socialize, are about more than just signing up customers, Macaluso said.
"Being present there means we can see what works, what's needed, and build it out. The Medicare-eligible population in Fresno looks very different from one in Ventura."
"Just having materials in the same language is important, as is identifying the caller and routing them properly," Macaluso added.
Blacks, Latinos, and Asians overall are significantly more likely than white beneficiaries to choose Medicare Advantage plans, according to recent research conducted for Better Medicare Alliance, a nonprofit funded by health insurers. (Latino people can be of any race or combination of races.) But it's not clear to what extent that will translate into the growth of targeted networks: Big insurers' Medicare Advantage marketing efforts often target specific racial or ethnic cohorts, but the plans don't usually include any special features for those groups.
Utibe Essien, an assistant professor of medicine at UCLA, noted the historical underserving of the Black community, and that the shortage of Black physicians could make it hard to build a targeted offering for that population. Similarly, many parts of the country don't have a high enough concentration of specific groups to support a dedicated network.
Still, all three companies are optimistic about expansion among groups that haven't always been treated well by the health care system. "If you treat them with respect, and bring care to them the way they expect it, they will come," Winston said.
St. Louis' largest health system, BJC HealthCare, plans to merge with Kansas City's second-largest, Saint Luke's Health System, uniting more than 28 hospitals on both sides of Missouri by the end of this year.
The merger, which would span markets 250 miles apart and include facilities in neighboring Kansas and Illinois, is just one of the latest in a quickly consolidating hospital industry. Cross-market deals accounted for more than half of all hospital mergers and acquisitions during the last decade, according to a paper from experts on antitrust law. Today, nearly 60% of health systems operate multiple hospitals in different geographic markets.
Not only are such deals more common, they can increase costs for patients. Merged hospitals in the same state but in different markets raised prices as much as 10% compared with other hospitals, researchers found after analyzing past deals. A separate study found stand-alone hospitals raised prices 17% after they were acquired by a hospital company in another market.
But for some 50 years, federal regulators have not stepped in to prevent hospitals from merging with systems in other markets, according to antitrust law experts. Without federal intervention, states that have seen such megamergers, such as Michigan and California, are often left to wrestle with the complex question of how to respond, given the likelihood of higher prices for their residents.
The Federal Trade Commission and the Justice Department are reviewing public comments on draft merger guidelines designed to crack down on mergers in multiple sectors, including healthcare. It's not yet clear if or how cross-market hospital mergers within a state could be affected. Still, the draft says consolidation should not "entrench or extend a dominant position" by extending into "new markets."
But such cross-market mergers aren't quite a textbook case of a monopoly. When hospitals have bought up local rivals, knocking out their competition, federal regulators have intervened to block these traditional mergers to protect patients from the resulting loss of competition. In recent years, they helped stop proposed mergers in New Jersey, Utah, and Rhode Island. The thinking is that without local competition, prices increase and the quality of care decreases.
It's harder to prove how cross-market mergers, like the one planned in Missouri, reduce competition if the hospitals do not operate within a single market, said Chris Garmon, an assistant professor at the University of Missouri-Kansas City, who researches hospital mergers. Regulators would have to prove the mergers don't just raise prices but also run afoul of the law by suppressing competition.
"That's why we haven't seen a cross-market merger challenge yet. It's because it's hard to tell the story of why this would be a problem," he said.
The Federal Trade Commission did not answer questions from KFF Health News on its broader strategy around such deals or the BJC-Saint Luke's merger. Whether an investigation is underway is not public information, said Mitchell Katz, an agency spokesperson.
After the FTC didn't stop cross-market hospital mergers in California and Michigan, those states landed poles apart in handling the deals. California won concessions after challenging a deal, while Michigan did not intervene.
The FTC did closely examine the 2020 deal in Michigan between Spectrum Health, based in Grand Rapids, and the Detroit area's Beaumont Health. Still, it ultimately didn't oppose the marriage that created the state's largest hospital chain, Corewell Health, with 22 hospitals in regions more than 150 miles apart.
The lack of intervention frustrated some, including Bret Jackson, CEO of the Economic Alliance for Michigan, a nonprofit that helps employers wrangle health costs. Spectrum was already the more expensive operator, said Jackson. He worries Beaumont prices will rise to match Spectrum's once the insurance contracts with the individual hospital systems expire.
"They're not going to want to take a pay cut," Jackson said of Spectrum. "We're really concerned about it."
Jackson said that he was already fed up with rising hospital prices and that so are the automotive companies and laborers he represents. Health costs consume about 10% of a typical U.S. family's income.
Ellen Bristol, a Corewell Health spokesperson, did not address KFF Health News' questions about patient costs but said that the collaboration is improving quality statewide and creating efficiencies that help the company navigate economic headwinds.
Even though regulators did not step in, FTC staffers and Michigan's Department of the Attorney General volleyed emails back and forth for months, according to communications obtained by KFF Health News through a public records request from the state.
The FTC asked the attorney general's office to connect its staffers to employers and state officials, plus provide information and data on the healthcare landscape in the state, the emails show. The FTC interviewed executives from BorgWarner, an automotive supplier, and CMS Energy, a utility company.
Jackson said he, too, was interviewed by the FTC, which he said was less interested in his thoughts on the deal than in Michigan's market dynamics.
It's hard to glean much from the FTC's assessment of the merger because many of the emails the state supplied to KFF Health News are redacted. But they do illustrate what information and which people the FTC consulted to reach a decision.
The emails also suggest state officials were made aware of the FTC's findings. On the evening of Jan. 13, 2022, an assistant AG sent a lengthy email to Michigan Attorney General Dana Nessel about the FTC's review of possible antitrust implications, according to the subject line. In the version provided to KFF Health News, though, the entire email — except for the greeting and the signature — was blacked out.
The next day, other emails show, hospital officials began discussing final language with the AG's office for a press release announcing the deal would soon close.
Michigan did not move to block the deal or investigate further. Danny Wimmer, a spokesperson for Nessel, a Democrat, said the deal fell outside the authority of her office, further frustrating Jackson, of the Economic Alliance for Michigan.
"We need to give state regulators the tools to at least assess mergers in the healthcare system," Jackson said.
Nessel's position is not the attitude taken in all states. A 2020 merger agreement in California between Huntington Hospital in Pasadena and Cedars-Sinai Health System, with its flagship hospital in Los Angeles, attracted the attention of then-state Attorney General Xavier Becerra, who imposed conditions, such as price caps to protect consumers.
Becerra, a Democrat who is now Health and Human Services secretary, had argued the cross-market merger would lead to higher prices.
Employers relied on having both Cedars-Sinai and Huntington Hospital in their networks to ensure adequate access to all employees scattered across the massive Los Angeles region — with a population larger than that of most states — which California officials said has several distinct markets serving patients. If the two were to combine, employers would have to accept price hikes to maintain access to both entities, according to an analysis the AG's office commissioned. Health systems can "threaten to create important holes in a health plan's provider network," the analysis said, by refusing to include all hospitals, giving the system greater leverage to extract higher prices from the health plan.
Ultimately, the parties settled on revised conditions, which included a 10-year ban on all-or-nothing contracting with insurers and a cap on price increases for five years.
The settlement allowed Cedars-Sinai to expand access while reflecting a shared goal of "keeping healthcare affordable," said Duke Helfand, a spokesperson for Cedars-Sinai. Still, it was considered a win for antitrust enforcers, with implications that could reverberate across the country, some health economists said.
In Missouri, the key question is whether state officials will intervene. Attorney General Andrew Bailey, a Republican, is reviewing the merger, which requires his office's approval before it can close, said Madeline Sieren, a spokesperson for the AG.
Neither BJC nor Saint Luke's answered questions from KFF Health News about potential price increases or plans to improve quality. The hospitals have estimated the merged system will generate annual revenue topping $10 billion.
The Missouri systems ought to explain how this merger will benefit patients by lowering costs and improving quality, Garmon said.
"Whether they actually do them or not depends on whether they actually have the incentive to do them," Garmon said.
For the first time since 2019, congressional gridlock is poised to at least temporarily shut down big parts of the federal government — including many health programs.
If it happens, some government functions would stop completely and some in part, while others wouldn't be immediately affected — including Medicare, Medicaid, and health plans sold under the Affordable Care Act. But a shutdown could complicate the lives of everyone who interacts with any federal health program, as well as the people who work at the agencies administering them.
Here are five things to know about the potential impact to health programs:
1. Not all federal health spending is the same.
"Mandatory" spending programs, like Medicare, have permanent funding and don't need Congress to act periodically to keep them running. But the Department of Health and Human Services is full of "discretionary" programs — including at the National Institutes of Health, Centers for Disease Control and Prevention, community health centers, and HIV/AIDS initiatives — that must be specifically funded by Congress through annual appropriations bills.
The appropriations bills (there are 12 of them, each covering various departments and agencies) are supposed to be passed by both chambers of Congress and signed by the president before the start of the federal fiscal year, Oct. 1. This almost never happens. In fact, according to the Pew Research Center, Congress has passed all the appropriations bills in time for the start of the fiscal year only four times since the modern budget process was adopted in the 1970s; the last time was in 1997.
Congress usually keeps the lights on for the government by passing short-term funding bills, known as "continuing resolutions," or CRs, until lawmakers can resolve their differences on longer-term spending.
This year, however, a handful of conservative Republicans in the House have said they won't vote for any CR, in an attempt to force deeper spending cuts than those agreed to this spring in a bipartisan bill to raise the nation's borrowing authority. House Speaker Kevin McCarthy and his allies could join with Democrats to keep the government running, but that would almost certainly cost McCarthy his speakership. Several of the rebellious conservatives are already threatening to force a vote to oust him.
2. The Biden administration decides what stays open.
The White House Office of Management and Budget is responsible for drawing up contingency plans in case of a government shutdown and publishes one for each federal department. The plan for Health and Human Services estimates that 42% of its staff would be furloughed in a shutdown and 58% retained.
The general rule is that two types of activities may continue absent annual spending authority from Congress. One is activities needed "for safety of human life or the protection of property." At HHS, that would include caring for patients at the hospital on the campus of the National Institutes of Health — though new patients generally would not be admitted — as well as the agency's laboratory animals, and CDC investigations of disease outbreaks.
Other activities that may continue are those with funding sources that aren't dependent on annual appropriations. Medicare and Social Security, for example, are entitlements funded by taxes and premiums. Drug approvals at the FDA are largely funded by user fees paid by drugmakers, so they could continue as usual.
Also unaffected are programs that have been funded in advance by Congress. For example, the Indian Health Service is already funded through the 2024 fiscal year.
3. What happens to enrollment in Medicare and Affordable Care Act plans?
It depends on how long the shutdown lasts. In the short term, mandatory spending programs would be mostly, but not completely, unaffected by a government shutdown. Benefits would continue under programs like Medicare, Medicaid, and the Affordable Care Act, and doctors and hospitals could continue to submit bills and get paid. But federal staffers not considered "essential" would be furloughed.
That means initial Medicare enrollment could be temporarily stopped. According to the Committee for a Responsible Federal Budget, an independent group that tracks federal spending, during the 1995-96 federal shutdown, "more than 10,000 Medicare applicants were temporarily turned away every day of the shutdown."
A shutdown shouldn't much affect Medicare's annual open enrollment period, which starts Oct. 15 and allows current beneficiaries to join or change private Medicare Advantage or prescription drug plans. That's because much of the funding to help seniors and other beneficiaries choose or change Medicare health plans has already been allocated.
Rebecca Kinney, who runs the HHS office that oversees the federal program that counsels Medicare beneficiaries about their myriad choices, said Sept. 22 that funding for both the 1-800-MEDICARE hotline and federally funded state counseling agencies has already been distributed for this year, so neither would be affected, at least in the short run.
The same is true for Affordable Care Act plans, which open for enrollment Nov. 1. The HHS contingency documents say the Centers for Medicare & Medicaid Services, which oversees the federal health exchange, healthcare.gov, "will continue Federal Exchange activities, such as eligibility verification," using fees paid by insurers left over from the previous year.
Still, about half of CMS staffers would be furloughed in a shutdown. That could complicate a lot of other activities there, starting with drug price negotiations set to begin Oct. 1. HHS Secretary Xavier Becerra told reporters at the White House last week that a shutdown would likely push back the timeline for negotiations.
A shutdown would also threaten HHS oversight of the Medicaid "unwinding" process, as states reevaluate the eligibility of those enrolled in the program for low-income people. State workers would be unaffected, according to the Georgetown University Center for Children and Families, so eligibility reviews would continue regardless. But because of federal furloughs, "technical assistance to help states address unwinding problems and adopt mitigation strategies could cease," wrote the center's Kelly Whitener and Edwin Park. "Efforts to determine if there are further renewal processes that are out of compliance with federal requirements could be limited or ended."
4. What if the shutdown is prolonged?
More programs could be affected. For example, the HHS shutdown contingency document says that "CMS will have sufficient funding for Medicaid to fund the first quarter" of fiscal year 2024. The government has never been shut down long enough to know what would happen after that. The 2013 shutdown, which included HHS, lasted just over two weeks. Most of the agency wasn't affected by the 2018-19 shutdown because its annual appropriations bill had already been signed into law. (The FDA is funded under the appropriations bill that covers the Agriculture Department rather than the one that funds HHS.)
5. Do federal employees get paid during a shutdown?
It depends. Employees whose programs are funded continue to work and be paid. Those considered "essential" but whose programs are not funded would continue to work, but they wouldn't get paid until after the shutdown ends. A 2019 law now requires federal workers to get back pay when funding resumes, which was not always the case. However, federal contractors, including those who work in food service or maintenance jobs, have no such guarantee.
Kaiser Permanente and union representatives pledged to continue negotiating a new contract up until the last minute as the threat of the nation's latest large-scale strike looms next month.
Unless a deal is struck, more than 75,000 health workers will walk out for three days from Oct. 4-7, disrupting care for KP patients in California, Colorado, Oregon, Virginia, Washington, and Washington, D.C. The unions represent a wide range of KP health workers, including lab technicians, phlebotomists, pharmacists, optometrists, social workers, orderlies, and support staff.
A strike, if it occurs, would affect most of Kaiser Permanente's 39 hospitals and 622 medical offices across the U.S., and would disrupt care for many of its nearly 13 million patients. If workers walk off their jobs, "it will start to impact patient care right away," said John August, director of healthcare and partner programs at Cornell University's Scheinman Institute on Conflict Resolution, who is a former head of the union coalition currently negotiating with KP.
"You are immediately subject to problems with not being able to get patients in and out of the hospital. You risk problems with infection control. You're not going to get meals," August said.
Arlene Peasnall, Kaiser Permanente's senior vice president for human resources, said the Oakland, California-based healthcare giant's goal is "to reach a mutually beneficial agreement before any work stoppage occurs." But she also said the nonprofit has plans in place to blunt the impact of a walkout.
"We will be bargaining with Kaiser up until the day we go on strike," said Caroline Lucas, executive director of the Coalition of Kaiser Permanente Unions, which represents about 40% of KP's workforce. "Our front-line healthcare workers are fed up, and we really need Kaiser executives to seize the initiative and move forward on resolving the contract."
The current contract expires Sept. 30 and, after months of talks, the two sides still disagree over pay and staffing. The coalition wants a $25-an-hour minimum wage across the company. KP executives agree there should be an organization-wide floor, but they've proposed $21.
KP prefers varying wage increases across regions, since the cost of living can vary sharply. The coalition, which is pushing for uniform wage increases across all regions, contends that management's proposal is part of a "divide-and-conquer strategy." Peasnall said the union's stance "would prevent us from addressing fair market wages where we need to pay more to attract and retain the best people."
The unions say their lowest-paid workers can barely make ends meet in the face of soaring prices for food, gasoline, and other essentials. And, they say, KP hospitals and clinics are severely understaffed, forcing workers to put in long hours and fill multiple roles. They argue that management is not moving quickly enough to fill positions and that the quality of care has suffered as patients, some with serious illnesses, often wait months for appointments, face extremely long waits in the emergency room, and experience delays in hospital admissions.
An industrywide labor shortage hangs heavily over the contract talks. The pandemic was particularly brutal for healthcare workers who often worked long hours in grueling conditions, as colleagues fell ill, died, or quit. Workers say many of the positions that became vacant during the pandemic still have not been filled.
Miriam De La Paz, a secretary in the labor and delivery department of KP's Downey Medical Center in Southern California and a union steward, said when she is alone on a shift, she is responsible for two labor and delivery stations as well as triage, where patients are prioritized based on the acuity of their cases.
"Imagine if I'm putting this baby in the system and your wife shows up in pain, crying, but I'm not there to register her," De La Paz said. "I can't break myself in two."
Unions want KP to invest more in education, training, and recruitment to fill current openings and create a pipeline of future workers. KP says it is doing so.
Peasnall said KP has already filled more than 9,700 out of 10,000 new coalition-represented jobs the two sides had agreed to create this year. And she said KP's turnover rate is one-third the industry rate, in part because of "excellent pay and benefits."
Earlier this month, California lawmakers passed legislation to gradually raise the minimum wage for healthcare workers in the state to $25 an hour. If Democratic Gov. Gavin Newsom signs the bill into law, KP will have to comply. And nearly 80% of workers represented by the coalition in the current contract talks are in California.
On Sept. 22, as bargaining continued in San Francisco, the unions announced that more than 75,000 of the 85,000 workers they represent would stage the three-day walkout if there's no deal. Federal law requires 10 days' notice of strikes at healthcare facilities. The coalition said it is "prepared to engage in another longer, stronger strike in November," if no agreement is reached by then.
A coalition spokesperson, Betsy Twitchell, said workers would welcome the Biden administration's involvement in the talks "because of the importance of these negotiations to millions of patients and 75,000 frontline healthcare workers."
The unions say KP can afford to be more generous, citing its robust financial health.
Although KP reported a net loss of almost $4.5 billion in 2022, it generated a cumulative net income of nearly $22 billion over the three preceding years — both results driven largely by investment performance. In the first half of this year, KP posted profits of over $3 billion. And it is in a strong position to manage its debt, according to a report earlier this year by Fitch Ratings.
The unions note that Kaiser Permanente's CEO, Greg Adams, received almost $16 million in compensation in 2021 and that dozens of others in KP management made more than $1 million, according to a KP filing with the IRS.
Peasnall said the compensation of KP's senior management is less than that of their peers at other healthcare companies.
A KP walkout would be the latest in a string of worker movements. Strikes have hit Hollywood, hotels, auto manufacturers, and other industries. Public approval of unions is at a nearly 60-year high, according to a Gallup Poll released in August 2022.
Health workers are increasingly engaged, too. Several hospital groups have been hit by strikes, including Cedars-Sinai Medical Center in Los Angeles and numerous facilities belonging to Sutter Health in Northern California, as well as healthcare organizations in other states.
"There is an atmosphere in the country: It's labor summer, it's strike summer, it's all that," August said. "That definitely has an influence on union leadership that says, ‘We need to be a part of that.'"
Abby Madore covers a lot of ground each day at work.
A staffer at a community health center in Carson City, Nevada, Madore spends her days helping low-income residents understand their health insurance options, including Medicaid. Her phone is always ringing, she said, as she fields calls from clients who dial in from the state's remote reaches seeking help.
It's a big job, especially this year as states work to sort through their Medicaid rolls after the end of a pandemic-era freeze that prohibited disenrollment.
A few dozen specialists work for seven navigator organizations tasked with helping Nevadans enroll in or keep their coverage. Madore said she mostly works with people who live in rural Nevada, a sprawling landmass of more than 90,000 square miles.
Katie Charleson, communications officer for Nevada's state health marketplace, said it's always a challenge to reach people in rural areas. Experts say this problem isn't unique to the state and is causing concern that limited resources will throw rural Americans into jeopardy as the Medicaid unwinding continues.
KFF's Medicaid Enrollment and Unwinding Tracker shows that 72% of people who have lost Medicaid coverage since states began the unwinding process this year were disenrolled for procedural reasons, not because officials determined they are no longer eligible for the joint state-federal health insurance program.
By late August, federal officials directed state Medicaid overseers to pause some procedural disenrollments and reinstate some recipients whose coverage was dropped.
Experts say those procedural disenrollments could disproportionately affect rural people.
A brief recently published by researchers at the Georgetown University Center for Children and Families noted that rural Medicaid recipients face additional barriers to renewing coverage, including longer distances to eligibility offices and less access to the internet.
Nationwide, Medicaid and CHIP, the Children's Health Insurance Program, covered 47% of children and 18% of adults, respectively, in small towns and rural areas, compared with 40% of children and 15% of adults in metropolitan counties.
"As is clear from our research, rural communities rely on Medicaid to form the backbone of their health care system for children and families," said Joan Alker, who is one of the brief's co-authors, the executive director of the Center for Children and Families, and a research professor at Georgetown's McCourt School of Public Policy. "So if states bungle unwinding, this is going to impact rural communities, which are already struggling to keep enough providers around and keep their hospitals."
A lack of access to navigators in rural locales to help Medicaid enrollees keep their coverage or find other insurance if they're no longer eligible could exacerbate the difficulties rural residents face. Navigators help consumers determine whether they're eligible for Medicaid or CHIP, coverage for children whose families earn too much to qualify for Medicaid, and help them enroll. If their clients are not eligible for these programs, navigators help them enroll in marketplace plans.
Navigators operate separately from Nevada's more than 200 call center staffers who help residents manage social service benefits.
Navigators are required by the federal government to provide their services at no cost to consumers and give unbiased guidance, setting them apart from insurance broker agents, who earn commissions on certain health plans. Without them, there would be no free service guiding consumers through shopping for health insurance and understanding whether their health plans cover key services, like preventive care.
Roughly 30 to 40 certified enrollment counselors like Madore work at navigator organizations helping consumers enroll in plans through Nevada Health Link, the state health marketplace, which sells Affordable Care Act plans, said Charleson. One of these groups is based in the small capital city of Carson City, 30 miles south of Reno, where fewer than 60,000 people live. The rest are in the urban centers of Reno and Las Vegas.
Availability of navigators and their outreach tactics vary from state to state.
In Montana, which is larger than Nevada but has one-third the population, six people work as navigators. They cover the entire state, reaching Medicaid beneficiaries and people seeking help with coverage by phone or in person by traveling to far-flung communities. For example, a navigator in Billings, in south-central Montana, has worked with the Crow and Northern Cheyenne Tribes, whose reservations lie relatively nearby, said Olivia Riutta, director of population health for the Montana Primary Care Association. But officials struggle to reach northeastern Montana, with its Fort Peck Reservation.
Having navigators in rural communities to help people in person is an ongoing challenge the country faces, said Alker. But the unwinding circumstances make it an especially important moment for the role navigators play in guiding people through complex insurance processes, she said.
This became clear following a recent survey regarding what consumers encounter when independently searching for health coverage on Google. "The results are really concerning," said survey co-author JoAnn Volk, a research professor and the founder and co-director of the Georgetown University Center on Health Insurance Reforms.
The researchers found that former Medicaid enrollees looking for health plans on the private market face aggressive, misleading marketing of limited-benefit products that don't cover important services and fail to protect consumers from high health costs.
Researchers shopped for coverage using two profiles of consumers who were losing Medicaid coverage and were eligible for a plan with no premiums or deductibles on the ACA marketplace.
The team reported, though, that none of 20 sales representatives who responded to their queries mentioned that plan, and more than half pushed the limited-benefit products. The representatives also made false and misleading statements about the plans they were touting and misrepresented the availability or affordability of the marketplace plans.
The sales reps and brokers quoted limited plans that cost $200 to $300 a month, Volk said. Such an expense could prove unaffordable for consumers who may still be low-income despite being ineligible for Medicaid.
"If they can't get to a navigator, I would not trust that they would get to their best coverage option in the marketplace, or to the marketplace at all, frankly," Volk said.
Making a difficult problem more challenging, the federal government does not require states to break down Medicaid disenrollment data by county, making it harder for experts and researchers to track and differentiate rural and urban concerns. The Center for Children and Families does so with data from the Census Bureau, which Alker pointed out won't be available until next fall.
A data point that will be important to watch as states continue the redetermination process, Alker said, is call center statistics. People in rural areas rely more heavily on that method of renewing coverage.
"Call abandonment rate" is one such statistic. CMS defines it as the percentage of calls that drop from the queue in two separate measures — calls dropped up to and including 60 seconds, and calls dropped after 60 seconds. In August, the agency sent a letter to the Nevada Department of Health and Human Services about its rate: An average of 56% of calls dropped in May, the first month after Nevada's unwinding began.
The agency "has concerns that your average call center wait time and abandonment rate are impeding equitable access to assistance and the ability for people to apply for or renew Medicaid and CHIP coverage by phone and may indicate non-compliance with federal requirements," said Anne Marie Costello, deputy director of CMS.
In the letter, Costello also cited the 45% of Medicaid enrollees whose coverage was terminated for procedural reasons in May.
All 50 states received letters about early data, but only Idaho, South Carolina, Texas, and Utah had higher disenrollment rates than Nevada, and no state had a higher rate of call abandonment.
Officials at Nevada's Division of Welfare and Supportive Services said its call center, staffed by 277 family service specialists, receives more than 200,000 calls a month. A spokesperson said the phone system offers self-service options whereby customers can obtain information about their Medicaid renewal date and benefit amounts by following prompts. Because those calls aren't handled by a case manager, they are considered "abandoned," the spokesperson said, raising the rate even though callers' questions may have been fully addressed.
People shopping around for coverage after a lapse might go into a panic, Madore said, and the best part of her job is providing relief by helping them understand their options after disenrollment from Medicaid or CHIP.
When people find out the wide range of free services navigators like Madore offer, they're shocked, she said.
"They're unaware of how much support we can provide," Madore said. "I've had people call me back and they say, ‘It's my first time using insurance. Where do I go to urgent care?'"
Tennessee last year spent $48 million on a single drug, Humira — about $62,000 for each of the 775 patients who were covered by its employee health insurance program and receiving the treatment. So when nine Humira knockoffs, known as biosimilars, hit the market for as little as $995 a month, the opportunity for savings appeared ample and immediate.
But it isn't here yet. Makers of biosimilars must still work within a healthcare system in which basic economics rarely seems to hold sway.
For real competition to take hold, the big pharmacy benefit managers, or PBMs, the companies that negotiate prices and set the prescription drug menu for 80% of insured patients in the United States, would have to position the new drugs favorably in health plans.
They haven't, though the logic for doing so seems plain.
Humira has enjoyed high-priced U.S. exclusivity for 20 years. Its challengers could save the healthcare system $9 billion and herald savings from the whole class of drugs called biosimilars — a windfall akin to the hundreds of billions saved each year through the purchase of generic drugs.
The biosimilars work the same way as Humira, an injectable treatment for rheumatoid arthritis and other autoimmune diseases. And countries such as the United Kingdom, Denmark, and Poland have moved more than 90% of their Humira patients to the rival drugs since they launched in Europe in 2018. Kaiser Permanente, which oversees medical care for 12 million people in eight U.S. states, switched most of its patients to a biosimilar in February and expects to save $300 million this year alone.
Biologics — both the brand-name drugs and their imitators, or biosimilars — are made with living cells, such as yeast or bacteria. With dozens of biologics nearing the end of their patent protection in the next two decades, biosimilars could generate much higher savings than generics, said Paul Holmes, a partner at Williams Barber Morel who works with self-insured health plans. That's because biologics are much more expensive than pills and other formulations made through simpler chemical processes.
For example, after the first generics for the blockbuster anti-reflux drug Nexium hit the market in 2015, they cost around $10 a month, compared with Nexium's $100 price tag. Coherus BioSciences launched its Humira biosimilar, Yusimry, in July at $995 per two-syringe carton, compared with Humira's $6,600 list price for a nearly identical product.
"The percentage savings might be similar, but the total dollar savings are much bigger," Holmes said, "as long as the plan sponsors, the employers, realize the opportunity."
That's a big if.
While a manufacturer may need to spend a few million dollars to get a generic pill ready to market, makers of biosimilars say their development can require up to eight years and $200 million. The business won't work unless they gain significant market share, they say.
The biggest hitch seems to be the PBMs. Express Scripts and Optum Rx, two of the three giant PBMs, have put biosimilars on their formularies, but at the same price as Humira. That gives doctors and patients little incentive to switch. So Humira remains dominant for now.
"We're not seeing a lot of takeup of the biosimilar," said Keith Athow, pharmacy director for Tennessee's group insurance program, which covers 292,000 state and local employees and their dependents.
The ongoing saga of Humira — its peculiar appeal to drug middlemen and insurers, the patients who've benefited, the patients who've suffered as its list price jumped sixfold since 2003 — exemplifies the convoluted U.S. healthcare system, whose prescription drug coverage can be spotty and expenditures far more unequal than in other advanced economies.
Biologics like Humira occupy a growing share of U.S. healthcare spending, with their costs increasing 12.5% annually over the past five years. The drugs are increasingly important in treating cancers and autoimmune diseases, such as rheumatoid arthritis and inflammatory bowel disease, that afflict about 1 in 10 Americans.
Humira's $200 billion in global sales make it the best-selling drug in history. Its manufacturer, AbbVie, has aggressively defended the drug, filing more than 240 patents and deploying legal threats and tweaks to the product to keep patent protections and competitors at bay.
The company's fight for Humira didn't stop when the biosimilars finally appeared. The drugmaker has told investors it doesn't expect to lose much market share through 2024. "We are competing very effectively with the various biosimilar offerings," AbbVie CEO Richard Gonzalez said during an earnings call.
How AbbVie Maintains Market Share
One of AbbVie's strategies was to warn health plans that if they recommended biosimilars over Humira they would lose rebates on purchases of Skyrizi and Rinvoq, two drugs with no generic imitators that are each listed at about $120,000 a year, according to PBM officials. In other words, dropping one AbbVie drug would lead to higher costs for others.
Industry sources also say the PBMs persuaded AbbVie to increase its Humira rebates — the end-of-the-year payments, based on total use of the drug, which are mostly passed along by the PBMs to the health plan sponsors. Although rebate numbers are kept secret and vary widely, some reportedly jumped this year by 40% to 60% of the drug's list price.
The leading PBMs — Express Scripts, Optum, and CVS Caremark — are powerful players, each part of a giant health conglomerate that includes a leading insurer, specialty pharmacies, doctors' offices, and other businesses, some of them based overseas for tax advantages.
Yet challenges to PBM practices are mounting. The Federal Trade Commission began a major probe of the companies last year. Kroger canceled its pharmacy contract with Express Scripts last fall, saying it had no bargaining power in the arrangement, and, on Aug. 17, the insurer Blue Shield of California announced it was severing most of its business with CVS Caremark for similar reasons.
Critics of the top PBMs see the Humira biosimilars as a potential turning point for the secretive business processes that have contributed to stunningly high drug prices.
Although list prices for Humira are many times higher than those of the new biosimilars, discounts and rebates offered by AbbVie make its drug more competitive. But even if health plans were paying only, say, half of the net amount they pay for Humira now — and if several biosimilar makers charged as little as a sixth of the gross price — the costs could fall by around $30,000 a year per patient, said Greg Baker, CEO of AffirmedRx, a smaller PBM that is challenging the big companies.
Multiplied by the 313,000 patients currently prescribed Humira, that comes to about $9 billion in annual savings — a not inconsequential 1.4% of total national spending on pharmaceuticals in 2022.
The launch of the biosimilar Yusimry, which is being sold through Mark Cuban's Cost Plus Drugs pharmacy and elsewhere, "should send off alarms to the employers," said Juliana Reed, executive director of the Biosimilars Forum, an industry group. "They are going to ask, ‘Time out, why are you charging me 85% more, Mr. PBM, than what Mark Cuban is offering? What is going on in this system?'"
Cheaper drugs could make it easier for patients to pay for their drugs and presumably make them healthier. A KFF survey in 2022 found that nearly a fifth of adults reported not filling a prescription because of the cost. Reports of Humira patients quitting the drug for its cost are rife.
Convenience, Inertia, and Fear
When Sue Lee of suburban Louisville, Kentucky, retired as an insurance claims reviewer and went on Medicare in 2017, she learned that her monthly copay for Humira, which she took to treat painful plaque psoriasis, was rising from $60 to $8,000 a year.
It was a particularly bitter experience for Lee, now 81, because AbbVie had paid her for the previous three years to proselytize for the drug by chatting up dermatology nurses at fancy AbbVie-sponsored dinners. Casting about for a way to stay on the drug, Lee asked the company for help, but her income at the time was too high to qualify her for its assistance program.
"They were done with me," she said. Lee went off the drug, and within a few weeks the psoriasis came back with a vengeance. Sores covered her calves, torso, and even the tips of her ears. Months later she got relief by entering a clinical trial for another drug.
Health plans are motivated to keep Humira as a preferred choice out of convenience, inertia, and fear. While such data is secret, one Midwestern firm with 2,500 employees told KFF Health News that AbbVie had effectively lowered Humira's net cost to the company by 40% after July 1, the day most of the biosimilars launched.
One of the top three PBMs, CVS Caremark, announced in August that it was creating a partnership with drugmaker Sandoz to market its own cut-rate version of Humira, called Hyrimoz, in 2024. But Caremark didn't appear to be fully embracing even its own biosimilar. Officials from the PBM notified customers that Hyrimoz will be on the same tier as Humira to "maximize rebates" from AbbVie, Tennessee's Athow said.
Most of the rebates are passed along to health plans, the PBMs say. But if the state of Tennessee received a check for, say, $20 million at the end of last year, it was merely getting back some of the $48 million it already spent.
"It's a devil's bargain," said Michael Thompson, president and CEO of the National Alliance of Healthcare Purchaser Coalitions. "The happiest day of a benefit executive's year is walking into the CFO's office with a several-million-dollar check and saying, ‘Look what I got you!'"
Executives from the leading PBMs have said their clients prefer high-priced, high-rebate drugs, but that's not the whole story. Some of the fees and other payments that PBMs, distributors, consultants, and wholesalers earn are calculated based on a drug's price, which gives them equally misplaced incentives, said Antonio Ciaccia, CEO of 46Brooklyn, a nonprofit that researches the drug supply chain.
"The large intermediaries are wedded to inflated sticker prices," said Ciaccia.
AbbVie has warned some PBMs that if Humira isn't offered on the same tier as biosimilars it will stop paying rebates for the drug, according to Alex Jung, a forensic accountant who consults with the Midwest Business Group on Health.
AbbVie did not respond to requests for comment.
One of the low-cost Humira biosimilars, Organon's Hadlima, has made it onto several formularies, the ranked lists of drugs that health plans offer patients, since launching in February, but "access alone does not guarantee success" and doesn't mean patients will get the product, Kevin Ali, Organon's CEO, said in an earnings call in August.
If the biosimilars are priced no lower than Humira on health plan formularies, rheumatologists will lack an incentive to prescribe them. When PBMs put drugs on the same "tier" on a formulary, the patient's copay is generally the same.
In an emailed statement, Optum Rx said that by adding several biosimilars to its formularies at the same price as Humira, "we are fostering competition while ensuring the broadest possible choice and access for those we serve."
Switching a patient involves administrative costs for the patient, health plan, pharmacy, and doctor, said Marcus Snow, chair of the American College of Rheumatology's Committee on Rheumatologic Care.
Doctors' Inertia Is Powerful
Doctors seem reluctant to move patients off Humira. After years of struggling with insurance, the biggest concern of the patient and the rheumatologist, Snow said, is "forced switching by the insurer. If the patient is doing well, any change is concerning to them." Still, the American College of Rheumatology recently distributed a video informing patients of the availability of biosimilars, and "the data is there that there's virtually no difference," Snow said. "We know the cost of healthcare is exploding. But at the same time, my job is to make my patient better. That trumps everything."
"All things being equal, I like to keep the patient on the same drug," said Madelaine Feldman, a New Orleans rheumatologist.
Gastrointestinal specialists, who often prescribe Humira for inflammatory bowel disease, seem similarly conflicted. American Gastroenterological Association spokesperson Rachel Shubert said the group's policy guidance "opposes nonmedical switching" by an insurer, unless the decision is shared by provider and patient. But Siddharth Singh, chair of the group's clinical guidelines committee, said he would not hesitate to switch a new patient to a biosimilar, although "these decisions are largely insurance-driven."
HealthTrust, a company that procures drugs for about 2 million people, has had only five patients switch from Humira this year, said Cora Opsahl, director of the Service Employees International Union's 32BJ Health Fund, a New York state plan that procures drugs through HealthTrust.
But the biosimilar companies hope to slowly gain market footholds. Companies like Coherus will have a niche and "they might be on the front end of a wave," said Ciaccia, given employers' growing demands for change in the system.
The $2,000 out-of-pocket cap on Medicare drug spending that goes into effect in 2025 under the Inflation Reduction Act could spur more interest in biosimilars. With insurers on the hook for more of a drug's cost, they should be looking for cheaper options.
For Kaiser Permanente, the move to biosimilars was obvious once the company determined they were safe and effective, said Mary Beth Lang, KP's chief pharmacy officer. The first Humira biosimilar, Amjevita, was 55% cheaper than the original drug, and she indicated that KP was paying even less since more drastically discounted biosimilars launched. Switched patients pay less for their medication than before, she said, and very few have tried to get back on Humira.
Prescryptive, a small PBM that promises transparent policies, switched 100% of its patients after most of the other biosimilars entered the market July 1 "with absolutely no interruption of therapy, no complaints, and no changes," said Rich Lieblich, the company's vice president for clinical services and industry relations.
AbbVie declined to respond to him with a competitive price, he said.
Nurses, researchers, and workplace safety officers worry new guidelines from the Centers for Disease Control and Prevention might reduce protection against the coronavirus and other airborne pathogens in hospitals.
A CDC advisory committee has been updating its 2007 standards for infection control in hospitals this year. Many healthcare professionals and scientists expressed outrage after the group released a draft of its proposals in June.
The draft controversially concluded that N95 face masks are equivalent to looser, surgical face masks in certain settings — and that doctors and nurses need to wear only surgical masks when treating patients infected by "common, endemic" viruses, like those that cause the seasonal flu.
The committee was slated to vote on the changes on Aug. 22, but it postponed action until November. Once the advice is final, the CDC begins a process of turning the committee's assessment into guidelines that hospitals throughout the United States typically follow. After the meeting, members of the public expressed concern about where the CDC was headed, especially as covid-19 cases rise. Nationwide, hospital admissions and deaths due to covid have been increasing for several consecutive weeks.
"Healthcare facilities are where some of the most vulnerable people in our population have to frequent or stay," said Gwendolyn Hill, a research intern at Cedars-Sinai Medical Center in Los Angeles, after the committee's presentation. She said N95 masks, ventilation, and air-purifying technology can lower rates of covid transmission within hospital walls and "help ensure that people are not leaving sicker than they came."
"We are very happy to receive feedback," Alexander Kallen, chief of the Prevention and Response Branch in the CDC's Division of Healthcare Quality Promotion, told KFF Health News. "It is our goal to develop a guideline that is protective of patients, visitors, and health workers." He added that the draft guidelines are far from final.
In June, members of the CDC's group — the Healthcare Infection Control Practices Advisory Committee — presented a draft of their report, citing studies that found no difference in infection rates among health providers who wore N95 masks versus surgical masks in the clinic. They noted flaws in the data. For example, many health workers who got covid in the trials were not infected while wearing their masks at work. But still, they concluded the masks were equivalent.
Their conclusion runs contrary to the CDC's 2022 report, which found that an N95 mask cuts the odds of testing positive for the coronavirus by 83%, compared with 66% for surgical masks and 56% for cloth masks. It also excludes a large clinical trial published in 2017 finding that N95 masks were far superior to surgical masks in protecting health workers from influenza infections. And it contradicts an extensive evaluation by the Royal Society, the United Kingdom's national academy of sciences, finding that N95 masks, also called N95 respirators, were more effective against covid than surgical masks in healthcare settings around the world.
"It's shocking to suggest that we need more studies to know whether N95 respirators are effective against an airborne pathogen," said Kaitlin Sundling, a physician and pathologist at the University of Wisconsin-Madison, in a comment following the June meeting. "The science of N95 respirators is well established and based on physical properties, engineered filtered materials, and our scientific understanding of how airborne transmission works."
Her assertion is backed by the California occupational safety agency, Cal/OSHA, whose rules on protecting at-risk workers from infections might be at odds with the CDC's if the proposals are adopted. "The CDC must not undermine respiratory protection regulation by making the false and misleading claim that there is no difference in protection" between N95 masks and surgical masks, commented Deborah Gold, an industrial hygienist at Cal/OSHA, at the August meeting.
Researchers and occupational safety experts were also perplexed by how the committee categorized airborne pathogens. A surgical mask, rather than an N95, was suggested as protection for a category they created for "common, endemic" viruses that spread over short distances, and "for which individuals and communities are expected to have some immunity." Three committee representatives, researchers Hilary Babcock, Erica Shenoy, and Sharon Wright, were among the authors of a June editorial arguing that hospitals should no longer require all healthcare workers, patients, and visitors to wear masks in hospitals. "The time has come to deimplement policies that are not appropriate for an endemic pathogen," they wrote.
However, in a call with KFF Health News, Kallen clarified that the committee put coronaviruses that cause colds in that category, but not yet the coronavirus causing covid.
The committee's next tier consisted of viruses in a "pandemic-phase," when the pathogen is new and little immunity through infection or vaccination exists. It recommended that health workers wear an N95 mask when treating patients infected by bugs in this category. Its third, highest tier of protection was reserved for pathogens like those causing measles and tuberculosis, which, they claimed, can spread further than lower-tier threats and require an N95.
Virologists said the committee's categories hold little water, biologically speaking. A pathogen's mode of spreading isn't affected by how common it is; common viruses can still harm vulnerable populations; and many viruses, including SARS-CoV-2, can travel significant distances on microscopic droplets suspended in the air.
"Large COVID outbreaks in prisons and long-term healthcare facilities have demonstrated that the behavior of infectious aerosols is not easily classified, and these aerosols are not easily confined," wrote the deputy chief of health at Cal/OSHA, Eric Berg, in a letter of concern to the CDC committee, obtained by KFF Health News.
The committee pitted its assessment of N95 masks against their drawbacks. Its draft cites a study from Singapore in which nearly a third of healthcare personnel, mostly nurses, said wearing such masks negatively affected their work, causing acne and other problems exacerbated by hot and humid conditions and prolonged shifts. Rather than discard the masks, the authors of that study recommend better-fitting masks and rest breaks.
Noha Aboelata, a doctor and the CEO of Roots Community Health Center in Oakland, California, agrees. "There are other strategies to bring to bear, like improved mask design and better testing," she said, "if we decide it's unacceptable to give a patient covid when they go to the hospital."
Aboelata is one of hundreds of doctors, researchers, and others who signed a letter to CDC Director Mandy Cohen in July, expressing concern that the CDC committee will weaken protections in hospitals. They also warned that scaling back on N95 masks could have repercussions on emergency stockpiles, rendering doctors and nurses as vulnerable as they were in 2020 when mask shortages fueled infections. More than 3,600 health workers died in the first year of the pandemic in the United States, according to a joint investigation by KFF Health News and The Guardian.
The concerned clinicians hope the committee will reconsider its report in light of additional studies and perspectives before November. Referring to the draft, Rocelyn de Leon-Minch, an industrial hygienist for National Nurses United, said, "If they end up codifying these standards of care, it will have a disastrous impact on patient safety and impact our ability to respond to future health crises."
Meg Bakewell, who has cancer and cancer-related heart disease, sometimes emails her primary care physician, oncologist, and cardiologist asking them for medical advice when she experiences urgent symptoms such as pain or shortness of breath.
But she was a little surprised when, for the first time, she got a bill — a $13 copay — for an emailed consultation she had with her primary care doctor at University of Michigan Health. The health system had begun charging in 2020 for "e-visits" through its MyChart portal. Even though her out-of-pocket cost on the $37 charge was small, now she's worried about how much she'll have to pay for future e-visits, which help her decide whether she needs to see one of her doctors in person. Her standard copay for an office visit is $25.
"If I send a message to all three doctors, that could be three copays, or $75," said Bakewell, a University of Michigan teaching consultant who lives in Ypsilanti, Michigan, and is on long-term disability leave. "It's the vagueness of the whole thing. You don't know if you'll get into a copay or not. It just makes me hesitate."
Spurred by the sharp rise in email messaging during the covid pandemic, a growing number of health systems around the country have started charging patients when physicians and other clinicians send replies to their messages. Health systems that have adopted billing for some e-visits include a number of the nation's premier medical institutions: Cleveland Clinic, Mayo Clinic, San Francisco-based UCSF Health, Vanderbilt Health, St. Louis-based BJC HealthCare, Chicago-based Northwestern Medicine, and the U.S. Department of Veterans Affairs.
Billing for e-visits, however, raises knotty questions about the balance between fairly compensating providers for their time and enhancing patients' access to care. Physicians and patient advocates fret particularly about the potential financial impact on lower-income people and those whose health conditions make it hard for them to see providers in person or talk to them on the phone or through video.
A large part of the motivation for the billing is to reduce the messaging. Soon after the pandemic hit, health systems saw a 50% increase in emails from patients, with primary care physicians facing the biggest burden, said A Jay Holmgren, an assistant professor of health informatics at UCSF, the University of California-San Francisco. System executives sought to compensate doctors and other providers for the extensive time they were spending answering emails, while prodding patients to think more carefully about whether an in-person visit might be more appropriate than a lengthy message.
After UCSF started charging in November 2021, the rate of patient messaging dipped slightly, by about 2%, Holmgren and his colleagues found.
Like UCSF, many other health systems now charge fees when doctors or other clinicians respond to patient messages that take five minutes or more of the provider's time over a seven-day period and require medical expertise. They use three billing codes for e-visits, implemented in 2020 by the federal Centers for Medicare & Medicaid Services.
E-visits that are eligible for billing include those relating to changes in medication, new symptoms, changes or checkups related to a long-term condition, and requests to complete medical forms. There's no charge for messages about appointment scheduling, prescription refills, or other routine matters that don't require medical expertise.
So far, UCSF patients are being billed for only 2% to 3% of eligible e-visits, at least partly because it takes clinicians extra time and effort to figure out whether an email encounter qualifies for billing, Holmgren said.
At Cleveland Clinic, only 1.8% of eligible email visits are being billed to patients, said Eric Boose, the system's associate chief medical information officer. There are three billing rates based on the time the clinician takes to prepare the message — five to 10 minutes, 11 to 20 minutes, and 21 minutes or more. He said patients haven't complained about the new billing policy, which started last November, and that they've become "a little smarter and more succinct" in their messages, rather than sending multiple messages a week.
The doctors at Cleveland Clinic, like those at most health systems that bill for e-visits, don't personally pocket the payments. Instead, they get productivity credits, which theoretically enables them to reduce their hours seeing patients in the office.
"Most of our physicians said it's about time we're getting compensated for our time in messaging," Boose said. "We're hoping this helps them feel less stressed and burned out, and that they can get home to their families earlier."
"It's been a frustration for many physicians for many years that we weren't reimbursed for our ‘pajama-time' work," said Sterling Ransone, the chair of the American Academy of Family Physicians' Board of Directors. Ransone's employer, Riverside Health System in Virginia, started billing for e-visits in 2020. "We do it because it's the right thing for patients. But rarely do you see other professions do all this online work for free," he said.
"We see physicians working two to four hours every evening on their patient emails after their shift is over, and that's not sustainable," said CT Lin, the chief medical information officer at University of Colorado Health, which has not yet adopted billing for email visits. "But we worry that patients with complex disease will stop messaging us entirely because of this copay risk."
Many health care professionals share the fear that billing for messages will adversely affect medically and socially vulnerable patients. Even a relatively small copay could discourage patients from emailing their clinicians for medical advice in appropriate situations, said Caitlin Donovan, a senior director at the National Patient Advocate Foundation, citing studies showing the dramatic negative impact of copays on medication adherence.
Holmgren said that while patients with minor acute conditions may not mind paying for an email visit rather than coming into the office, the new billing policies could dissuade patients with serious chronic conditions from messaging their doctors. "We don't know who is negatively affected," he said. "Are we discouraging high-value messages that produce a lot of health gains? That is a serious concern."
Due to this worry, Lin said, University of Colorado Health is experimenting with an alternative way of easing the time burden of e-visits on physicians. Working with Epic, the dominant electronic health record vendor, it will have an artificial intelligence chatbot draft email replies to patient messages. The chatbot's draft message will then be edited by the provider. Several other health systems are already using the tool.
There also are questions about price transparency — whether patients can know when and how much they'll have to pay for an email visit, especially since much depends on their health plan's deductibles and copays.
While Medicare, Medicaid, and most private health plans cover email visits, not all do, experts say. Coverage may depend on the contract between a health system and an insurer. Ransone said Elevance Health, a Blue Cross Blue Shield carrier, recently told his health system it would no longer pay for email or telephonic visits in its commercial or Medicaid plans in Virginia. An Elevance spokesperson declined to comment.
Another price concern is that patients who are uninsured or have high-deductible plans may face the full cost of an email visit, which could run as high as $160.
At University of Michigan Health, where Bakewell receives her care, patients receive a portal alert prior to sending a message that there may be a charge; they must click a box indicating they understand, said spokesperson Mary Masson.
But Donovan said that leaves a lot of room for uncertainty. "How is the patient supposed to know whether something will take five minutes?" Donovan said. "And knowing what you'll be charged is impossible because of health plan design. Just saying patients could be charged is not providing transparency."
As a fourth-year ophthalmology resident at Emory University School of Medicine, Riley Lyons' biggest responsibilities include triage: When a patient comes in with an eye-related complaint, Lyons must make an immediate assessment of its urgency.
He often finds patients have already turned to "Dr. Google." Online, Lyons said, they are likely to find that "any number of terrible things could be going on based on the symptoms that they're experiencing."
So, when two of Lyons' fellow ophthalmologists at Emory came to him and suggested evaluating the accuracy of the AI chatbot ChatGPT in diagnosing eye-related complaints, he jumped at the chance.
In June, Lyons and his colleagues reported in medRxiv, an online publisher of health science preprints, that ChatGPT compared quite well to human doctors who reviewed the same symptoms — and performed vastly better than the symptom checker on the popular health website WebMD. And despite the much-publicized "hallucination" problem known to afflict ChatGPT — its habit of occasionally making outright false statements — the Emory study reported that the most recent version of ChatGPT made zero "grossly inaccurate" statements when presented with a standard set of eye complaints.
The relative proficiency of ChatGPT, which debuted in November 2022, was a surprise to Lyons and his co-authors. The artificial intelligence engine "is definitely an improvement over just putting something into a Google search bar and seeing what you find," said co-author Nieraj Jain, an assistant professor at the Emory Eye Center who specializes in vitreoretinal surgery and disease.
But the findings underscore a challenge facing the health care industry as it assesses the promise and pitfalls of generative AI, the type of artificial intelligence used by ChatGPT: The accuracy of chatbot-delivered medical information may represent an improvement over Dr. Google, but there are still many questions about how to integrate this new technology into health care systems with the same safeguards historically applied to the introduction of new drugs or medical devices.
The smooth syntax, authoritative tone, and dexterity of generative AI have drawn extraordinary attention from all sectors of society, with some comparing its future impact to that of the internet itself. In health care, companies are working feverishly to implement generative AI in areas such as radiology and medical records.
When it comes to consumer chatbots, though, there is still caution, even though the technology is already widely available — and better than many alternatives. Many doctors believe AI-based medical tools should undergo an approval process similar to the FDA's regime for drugs, but that would be years away. It's unclear how such a regime might apply to general-purpose AIs like ChatGPT.
"There's no question we have issues with access to care, and whether or not it is a good idea to deploy ChatGPT to cover the holes or fill the gaps in access, it's going to happen and it's happening already," said Jain. "People have already discovered its utility. So, we need to understand the potential advantages and the pitfalls."
The Emory study is not alone in ratifying the relative accuracy of the new generation of AI chatbots. A report published in Nature in early July by a group led by Google computer scientists said answers generated by Med-PaLM, an AI chatbot the company built specifically for medical use, "compare favorably with answers given by clinicians."
AI may also have better bedside manner. Another study, published in April by researchers from the University of California-San Diego and other institutions, even noted that health care professionals rated ChatGPT answers as more empathetic than responses from human doctors.
Indeed, a number of companies are exploring how chatbots could be used for mental health therapy, and some investors in the companies are betting that healthy people might also enjoy chatting and even bonding with an AI "friend." The company behind Replika, one of the most advanced of that genre, markets its chatbot as, "The AI companion who cares. Always here to listen and talk. Always on your side."
"We need physicians to start realizing that these new tools are here to stay and they're offering new capabilities both to physicians and patients," said James Benoit, an AI consultant. While a postdoctoral fellow in nursing at the University of Alberta in Canada, he published a study in February reporting that ChatGPT significantly outperformed online symptom checkers in evaluating a set of medical scenarios. "They are accurate enough at this point to start meriting some consideration," he said.
Still, even the researchers who have demonstrated ChatGPT's relative reliability are cautious about recommending that patients put their full trust in the current state of AI. For many medical professionals, AI chatbots are an invitation to trouble: They cite a host of issues relating to privacy, safety, bias, liability, transparency, and the current absence of regulatory oversight.
The proposition that AI should be embraced because it represents a marginal improvement over Dr. Google is unconvincing, these critics say.
"That's a little bit of a disappointing bar to set, isn't it?" said Mason Marks, a professor and MD who specializes in health law at Florida State University. He recently wrote an opinion piece on AI chatbots and privacy in the Journal of the American Medical Association. "I don't know how helpful it is to say, ‘Well, let's just throw this conversational AI on as a band-aid to make up for these deeper systemic issues,'" he said to KFF Health News.
The biggest danger, in his view, is the likelihood that market incentives will result in AI interfaces designed to steer patients to particular drugs or medical services. "Companies might want to push a particular product over another," said Marks. "The potential for exploitation of people and the commercialization of data is unprecedented."
OpenAI, the company that developed ChatGPT, also urged caution.
"OpenAI's models are not fine-tuned to provide medical information," a company spokesperson said. "You should never use our models to provide diagnostic or treatment services for serious medical conditions."
John Ayers, a computational epidemiologist who was the lead author of the UCSD study, said that as with other medical interventions, the focus should be on patient outcomes.
"If regulators came out and said that if you want to provide patient services using a chatbot, you have to demonstrate that chatbots improve patient outcomes, then randomized controlled trials would be registered tomorrow for a host of outcomes," Ayers said.
He would like to see a more urgent stance from regulators.
"One hundred million people have ChatGPT on their phone," said Ayers, "and are asking questions right now. People are going to use chatbots with or without us."
At present, though, there are few signs that rigorous testing of AIs for safety and effectiveness is imminent. In May, Robert Califf, the commissioner of the FDA, described "the regulation of large language models as critical to our future," but aside from recommending that regulators be "nimble" in their approach, he offered few details.
In the meantime, the race is on. In July, The Wall Street Journal reported that the Mayo Clinic was partnering with Google to integrate the Med-PaLM 2 chatbot into its system. In June, WebMD announced it was partnering with a Pasadena, California-based startup, HIA Technologies Inc., to provide interactive "digital health assistants." And the ongoing integration of AI into both Microsoft's Bing and Google Search suggests that Dr. Google is already well on its way to being replaced by Dr. Chatbot.
Since the National Suicide Prevention Lifeline transitioned a year ago to the three-digit crisis phone number 988, there has been a 33% increase in the number of calls, chats, and texts to the hotline.
But even with that early sign of success, the program's financial future is shaky.
Over the past two years, the federal government has provided about $1 billion from the American Rescue Plan and Bipartisan Safer Communities acts to launch the number, designed as an alternative to 911 for those experiencing a mental health crisis. After that infusion runs out, it's up to states to foot the bill for their call centers.
"We don't know what Congress will allocate in the future," said Danielle Bennett, a spokesperson for the federal Substance Abuse and Mental Health Services Administration, which oversees 988. "But the hope is that there will be continued strong bipartisan support for funding 988 at the level it needs to be funded at and that states will also create funding mechanisms that make sense for their states."
Only eight states have enacted legislation to sustain 988 through phone fees, according to the National Alliance on Mental Illness, which is tracking state funding for the system. Others have budgeted short-term funding. But many predominantly rural states, where mental health services are in short supply and suicide rates are often higher than in more urban states, have not made long-term plans to provide support.
According to a KFF analysis of Lifeline data, since last summer 988 has received almost 5 million contacts, including calls, texts, and chat messages. And state programs managed to answer a high percentage of 988 calls instead of routing them to call centers elsewhere.
Mental health advocates and state 988 operators say that to keep those in-state staffers answering phones, promises of long-term funding are critical.
In the earlier version of the National Suicide Prevention Lifeline, "call centers, basically, were not paid," said Chuck Ingoglia, president and CEO of the National Council for Mental Wellbeing, which advocates for sustained investment in 988. "There is a growing recognition that we're making it easier for people to contact and, therefore, we need to build more infrastructure."
In Ohio, where data from spring 2023 shows local operators responded to 88% of calls, lawmakers recently acknowledged the need for stable funding. In July, Republican Gov. Mike DeWine approved $46.5 million for 988 in the state's biennial budget. But that support will last only two years.
"It is still not the most secure form of funding that we would hope for," said Brian Stroh, CEO and medical director of Netcare Access, a call center that serves four rural counties on Ohio's eastern border. "What if we turned the tables a little bit and said we're only going to fund 911 a little bit at a time? That's a really hard proposition to work under."
SAMHSA, which distributes 988 grant funding, likens the number to 911 except that it is strictly for mental health crises. The law that mandated 988's creation, the National Suicide Hotline Designation Act of 2020, allows states to install phone surcharges to support 988 indefinitely, similar to the funding structure for 911.
Stroh said that, while he is "pretty pleased" with how the first year of 988 went for Netcare Access, with short-term funding it's hard to reassure prospective call operators of job security or compete with rising wages in other industries.
For Kristin McCloud, executive director of Pathways of Central Ohio, a call center that also responds to rural counties in the eastern part of the state, the $573,056 her center received in 988's first year was exactly what it needed. She had money for training staffers to answer crisis calls and supplying them with computers for remote work.
During that time, operators answered 2,316 calls — almost double the previous year's volume.
"I really feel like, for once, we were given adequate funding," said McCloud, who has worked in social services more than 35 years.
According to SAMHSA, before 988 grants, most call centers received minimal federal funding to answer Lifeline calls, typically between $2,500 and $5,000 annually.
Like Stroh, McCloud views Ohio's recent allocation as positive but hopes the state installs a permanent funding plan. A bill pending in the legislature would add a surcharge to phone bills to help fund 988, as a few other states have done.
All but one of the eastern counties that Pathways of Central Ohio and Netcare Access serve are designated by the state's Department of Health Primary Care Office as mental health professional shortage areas.
In North Dakota, where almost every county is rural and has such a designation, a single call center manages the state's 988 program.
That center, FirstLink, has seen a significant increase in mental health crisis calls since the transition to 988. Comparing the first six months of 2023 to the first of 2022 alone, calls have increased 55%, according to Jeremy Brown, outreach director.
The demand has "helped us with sparking conversations with our state legislature about funding and support," he said.
In May, Republican Gov. Doug Burgum approved a one-time $1.86 million appropriation to 988 in the state's biennial budget.
Brown said the funding will not only allow FirstLink to train staff members and keep phone lines updated, but it will also help human service centers support mobile crisis units that can be dispatched to callers if necessary.
Though mobile crisis unit dispatch is an option, FirstLink prefers to deescalate crises over the phone, said Dallas Tufty, one of FirstLink's operators.
"The only time that we'll really call for rescue or something is if that person is in immediate, imminent danger of their life," they said.
Tufty works 40 hours a week at FirstLink, at least six of those spent answering calls and messages to 988. Operators like Tufty also answer FirstLink's 211 line, another program that provides health and social service assistance information to callers. It's not an emergency line, but on occasion people in crisis call there instead of 988.
No matter which line a call comes through, Tufty said, the hard part is not knowing what happens once the call is over.
"There's times where you don't really know if they're going to call back because they need to again," they said. "Even if you make a plan, there's only so much we can do on the phone to hold people to those plans."
While North Dakota and Ohio fund 988 through their state budgets, not all states do. In Montana, Republican Gov. Greg Gianforte recently dedicated $300 million to the behavioral health and developmental disabilities systems that, among other uses, can fund " opportunities for Montanans to receive integrated physical and behavioral health care," according to the bill authorizing the money. But the state has yet to address 988 funding specifically.
In 2021, Montana lawmakers declined to advance a bill that would have established a phone fee and corresponding revenue account to fund 988 ahead of its launch.
At this point, "if it is able to be funded in the budget, without new legislation, that's just fine with us," said Matt Kuntz, executive director of Montana's chapter of the National Alliance on Mental Illness. "We just want to make sure that it's sustainably funded, because it is an important service."