Even before the pandemic, the nation had a shortage of direct support professionals working in private homes, group facilities, day programs and other community settings.
This article was published on Friday, September 24, 2021 in Kaiser Health News.
Ernestine "Erma" Bryant likes her job, but the pay is a problem.
She works in a caregiver role as a "direct support professional" in Tifton, Georgia, helping people who have intellectual and developmental disabilities with basic functions such as dressing, bathing and eating.
Bryant said it's fulfilling work. "You can help people be successful — people who are confined to the bed," she said. "It gives me joy knowing that I can help that person get out of the house."
But she said she's being paid less than $10 an hour and is trying to get a second job.
In a way, Bryant is an anomaly, having worked as a support professional in the same job for five years in a field with high turnover. Even before the pandemic, the nation had a shortage of direct support professionals working in private homes, group facilities, day programs and other community settings.
Fears of contracting COVID-19 at work have made the caregiver staffing problem worse. Persistent low pay amid a tight U.S. labor market makes it that much harder to attract workers.
Worker shortages across the health care spectrum — from nurses to lower-level staffers — are an unprecedented challenge for hospitals and other medical organizations. The shortage is at an "epic level," said Elizabeth Priaulx, a legal specialist with the National Disability Rights Network.
People with disabilities who have been approved by state Medicaid programs to receive 40 hours a week in caregiver services now often get just 20 hours, Priaulx added. If family members can't help offset the gap, a person may be forced into a nursing home, she said.
The Zoller family of Flowery Branch, Georgia, is struggling with that reduction in service hours.
Katie, 34, is developmentally disabled and lives at home. Her father, John, said that instead of the 24/7 care she previously received, she is provided less than half of that at about 60 hours a week because of caregiver shortages. So John, 65, and his wife, Weda, 63, must fill in the rest. "We have to tag-team," he said. The staffing gap occurred after one caregiver for Katie moved away, and another took a warehouse job, each getting higher pay, he said.
Diane Wilush, CEO of Atlanta-based United Cerebral Palsy of Georgia, said her organization has more than 100 vacancies among 358 jobs in 24/7 residential programs. Many day programs, including those run by her group, have been unable to offer full services because of staffing gaps.
"We can't compete with every retail shop paying $15 to $18 an hour," Wilush said.
That's because several years ago the state of Georgia chose a base Medicaid reimbursement rate for residential services providers of $10.63 per hour, though they can pay caregivers more — and sometimes pay less. "It was an inadequate rate even then," Wilush said.
The strain from an increased workload has a negative effect on caregivers, said Bryant, the caregiver in Tifton. "When you don't have enough help, it makes you want to find another job," she said.
In 2019, before COVID erupted, the direct support professional turnover rate was 43% nationally, according to the National Core Indicators collaboration of public developmental disability agencies. In a February 2020 survey of providers by the American Network of Community Options and Resources, two-thirds of service providers said they were turning away new referrals. Since staffing shortages became a problem, 40% have seen a higher incidence of events that could harm a person's health or safety.
Workers have at times been forced to work 16-hour shifts during the pandemic, said Whitney Fuchs, CEO of InCommunity, an Atlanta-based provider of community services and support to people with developmental disabilities. "This crisis is going to erupt into unsafe, unhealthy situations."
His organization needs to fill 166 openings out of 490 positions. Before the pandemic, the number of job openings was 80. Even managers, who often cover work shifts, are leaving their jobs due to overwork, Fuchs said.
"People are tired constantly," he said. "This is somebody's life we're supporting. There have been adverse patient outcomes," such as medication mistakes.
Through the recently passed American Rescue Plan Act, the Biden administration has recognized the wage gap for direct care workers by adding more Medicaid funding to help compensate them for their work. The act increases the federal matching rate for state spending on home and community-based services by 10 percentage points from April 1, 2021, through March 31, 2022.
It requires states to submit spending plans for those funds. Georgia has submitted a plan that contains rate increases, as well as a study of worker wages. The proposal is under review by the Centers for Medicare & Medicaid Services, according to the Georgia Department of Behavioral Health and Developmental Disabilities. Staffers there said the department is "acutely aware" of the shortages.
Federal COVID funds have enabled Georgia to give a 10% pay increase for some provider services.
Other states are trying to buttress worker salaries on their own. Missouri recently approved $56 million to improve its direct support professional crisis.
Parents of people with disabilities, though, have concerns about the future viability of the services if the national worker shortage isn't fixed.
Bill Clarke and his wife are in their 80s. They have two children with multiple disabilities receiving services in residential homes in the Atlanta area.
"They have physical problems that require 24/7 care," Clarke said. "There are just not enough people willing to go into these lower-paying jobs. They are not compensated adequately."
If these services disappear, Clarke said, "we could not handle both of our sons physically."
It took years for Elle Moxley to get a diagnosis that explained her crippling gastrointestinal pain, digestion problems, fatigue, and hot, red rashes. And after learning in 2016 that she had Crohn's disease, a chronic inflammation of the digestive tract, she spent more than four years trying medications before getting her disease under control with a biologic drug called Remicade.
So Moxley, 33, was dismayed to receive a notice from her insurer in January that Remicade would no longer be covered as a preferred drug on her plan. Another drug, Inflectra, which the Food and Drug Administration says has no meaningful clinical differences from Remicade, is now preferred. It is a "biosimilar" drug.
"I felt very powerless," said Moxley, who recently started a job as a public relations coordinator for Kansas City Public Schools in Missouri. "I have this decision being made for me and my doctor that's not in my best interest, and it might knock me out of remission."
After Moxley's first Inflectra infusion in July, she developed a painful rash. It went away after a few days, but she said she continues to feel extremely fatigued and experiences gastrointestinal pain, constipation, diarrhea and nausea.
Many medical professionals look to biosimilar drugs as a way to increase competition and give consumers cheaper options, much as generic drugs do, and they point to the more robust use of these products in Europe to cut costs.
Yet the U.S. has been slower to adopt biosimilar drugs since the first such medicine was approved in 2015. That's partly because of concerns raised by patients like Moxley and their doctors, but also because brand-name biologics have kept biosimilars from entering the market. The companies behind the brand-name drugs have used legal actions to extend the life of their patents and incentives that make offering the brand biologic more attractive than offering a biosimilar on a formulary, listing which drugs are covered on an insurance plan.
"It distorts the market and makes it so that patients can't get access," said Dr. Jinoos Yazdany, a professor of medicine and chief of the rheumatology division at Zuckerberg San Francisco General Hospital.
Remicade's manufacturer, Johnson & Johnson, and Pfizer, which makes the Remicade biosimilar Inflectra, have been embroiled in a long-running lawsuit over Pfizer's claims that Johnson & Johnson tried to choke off competition through exclusionary contracts with insurers and other anti-competitive actions. In July, the companies settled the case on undisclosed terms.
In a statement, Pfizer said it would continue to sell Inflectra in the U.S. but noted ongoing challenges: "Pfizer has begun to see progress in the overall biosimilars marketplace in the U.S. However, changes in policy at a government level and acceptance of biosimilars among key stakeholders are critical to deliver more meaningful uptake so patients and the healthcare system at-large can benefit from the cost savings these medicines may deliver."
Johnson & Johnson said it is committed to making Remicade available to patients who choose it, which "compels us to compete responsibly on both price and value."
Biologic medicines, which are generally grown from living organisms such as animal cells or bacteria, are more complex and expensive to manufacture than drugs made from chemicals. In recent years, biologic drugs have become a mainstay of treatment for autoimmune conditions like Crohn's disease and rheumatoid arthritis, as well as certain cancers and diabetes, among other conditions.
Other drugmakers can't exactly reproduce these biologic drugs by following chemical recipes as they do for generic versions of conventional drugs.
Instead, biosimilar versions of biologic drugs are generally made from the same types of materials as the original biologics and must be "highly similar" to them to be approved by the FDA. They must have no clinically meaningful differences from the biologic drug, and be just as safe, pure and potent. More than a decade after Congress created an approval pathway for biosimilars, they are widely accepted as safe and effective alternatives to brand biologics.
Medical experts hope that as biosimilars become more widely used they will increasingly provide a brake on drug spending.
From 2015 to 2019, drug spending overall grew 6.1%, while spending on biologics grew more than twice as much — 14.6% — according to a report by IQVIA, a healthcare analytics company. In 2019, biologics accounted for 43% of drug spending in the U.S.
Biosimilars provide a roughly 30% discount over brand biologics in the U.S. but have the potential to reduce spending by more than $100 billion in the next five years, the IQVIA analysis found.
In a survey of 602 physicians who prescribe biologic medications, more than three-quarters said they believed biosimilars are just as safe and effective as their biologic counterparts, according to NORC.
But they were less comfortable with switching patients from a brand biologic to a biosimilar. While about half said they were very likely to prescribe a biosimilar to a patient just starting biologic therapy, only 31% said they were very likely to prescribe a biosimilar to a patient already doing well on a brand biologic.
It can be challenging to find a treatment regimen that works for patients with complicated chronic conditions, and physicians and patients often don't want to rock the boat once that is achieved.
In Moxley's case, for example, before her condition stabilized on Remicade, she tried a conventional pill called Lialda, the biologic drug Humira and a lower dose of Remicade.
Some doctors and patients raise concerns that switching between these drugs might cause patients to develop antibodies that cause the drugs to lose effectiveness. They want to see more research about the effects of such switches.
"We haven't seen enough studies about patients going from the biologic to the biosimilar and bouncing back and forth," said Dr. Marcus Snow, chair of the American College of Rheumatology's Committee on Rheumatologic Care. "We don't want our patients to be guinea pigs."
Manufacturers of biologic and biosimilar drugs have participated in advertising, exhibit or sponsorship opportunities with the American College of Rheumatology, according to ACR spokesperson Jocelyn Givens.
But studies show a one-time switch from Remicade to a biosimilar like Inflectra does not cause side effects or the development of antibodies, said Dr. Ross Maltz, a pediatric gastroenterologist at Nationwide Children's Hospital in Columbus, Ohio, and former member of the Crohn's & Colitis Foundation's National Scientific Advisory Committee. Studies may be conducted by researchers with extensive ties to the industry and funded by drugmakers.
Situations like Moxley's are unusual, said Kristine Grow, senior vice president of communications at AHIP, an insurer trade group.
"For patients who have been taking a brand-name biologic for some time, health insurance providers do not typically encourage them to switch to a biosimilar because of a formulary change, and most plans exclude these patients from any changes in cost sharing due to formulary changes," she said.
Drugmakers can seek approval from the FDA of their biosimilar as interchangeable with a biologic drug, allowing pharmacists, subject to state law, to switch a physician's prescription from the brand drug, as they often do with generic drugs.
However, the FDA has approved only one biosimilar (Semglee, a form of insulin) as interchangeable with a biologic (Lantus).
Like Moxley, many other patients using biologics get copay assistance from drug companies, but the money often isn't enough to cover the full cost. In her old job as a radio reporter, Moxley said, she hit the $7,000 maximum annual out-of-pocket spending limit for her plan by May.
In her new job, Moxley has an individual plan with a $4,000 maximum out-of-pocket limit, which she expects to blow past once again within months.
But she received good news recently: Her new plan will cover Remicade.
"I'm still concerned that I will have developed antibodies since my last dose," she said. "But it feels like a step in the direction of good health again."
A newly conservative Supreme Court agreed to hear a case most assumed it would use to overrule the 1973 landmark abortion-rights ruling, Roe v. Wade. And Democrats on Capitol Hill, convinced the issue would play to their political favor, vowed to bring up legislation that would write abortion protections into federal law. "We'll debate it. We'll vote on it. And we'll pass it," the Senate Democratic leader promised.
Sound familiar? The year was 1992. The Supreme Court case in question was Planned Parenthood of Southeastern Pennsylvania v. Casey. After the court surprised almost everyone by upholding the right to abortion, the legislation, called the "Freedom of Choice Act," never reached the floor of the Senate, nor the House. (Click on the hyperlink to go back in time.)
Lawmakers today face almost the same situation. The Supreme Court this week scheduled for Dec. 1 arguments on a case from Mississippi challenging that state's ban on abortion after 15 weeks of pregnancy. And the House, as soon as this week, could vote on the latest version of the Freedom of Choice Act, now called the "Women's Health Protection Act."
The question now, as it was then, is whether the legislation will help or hurt Democrats on one of the most polarizing issues in politics.
Just as in 1992, opponents of the current bill complain it would go much further than merely writing the protections of Roe into federal law. In addition to securing a person's right to abortion throughout pregnancy, the legislation would void many state restrictions the Supreme Court has allowed even as Roe stands, including those requiring parental involvement in a minor's abortion decision.
"This may be the most extreme legislation ever," Rep. Cathy McMorris Rodgers (R-Wash.) told the House Rules Committee on Monday. "Abortion for any reason at any stage of pregnancy until birth."
The bill would, Republicans complained, not just overturn existing state abortion restrictions, but it could also lead to mandatory public funding for abortion. Overturning the so-called Hyde Amendment that has banned most federal abortion funding since the late 1970s is a priority for many progressive Democrats, but it also marks a line that voters in many swing districts do not want their elected officials to cross.
While the scenarios seem eerily similar, some key differences emerge. The biggest: In 1992, the threat to abortion rights was theoretical; in 2021, millions of pregnant people already have lost reproductive rights after the high court failed to block a controversial Texas law that bans nearly all abortions as early as six weeks into pregnancy. To prevent courts from blocking it, the law is to be enforced not by state officials, but by individuals suing people who "aid or abet" someone in obtaining an abortion.
Under that law, Rep. Jamie Raskin (D-Md.) told the Rules Committee on Monday, "the whole country has basically been turned into bounty hunters for women exercising a constitutionally protected right."
"Texas has just completely changed what's at stake," said Cecile Richards, former president of Planned Parenthood and a longtime Texas politics observer. (Her mother, Ann Richards, who died in 2006, was governor in the 1990s.) "Women think, 'This will never happen,'" said Richards, who now co-chairs American Bridge 21st Century, a Democratic super political action committee. "Well, it just happened."
Yet the politics of abortion are both very much the same as they were three decades ago, and very different.
What's the same is that the outliers in both parties — Democrats who oppose abortion rights and Republicans who support them — would prefer not to have to vote on the issue. What's different is there are far fewer outliers today. In 1992 nearly a third of Democrats opposed abortion, including the then-governor of Pennsylvania, Robert Casey, who was the defendant in the Planned Parenthood suit and who tried, publicly and unsuccessfully, to change the party's platform in 1992 to oppose abortion. His son, Sen. Robert "Bob" Casey Jr. (D-Pa.), is one of a handful of Senate Democrats who do not strongly support abortion rights.
But it's not merely anti-abortion Democrats who are in shorter supply. In 1992 Republicans were as likely to lead abortion-rights fights as Democrats, and most efforts were bipartisan. Before 1972, in fact, Republicans were generally more supportive of abortion rights than Democrats.
And obviously the biggest difference between now and 1992 is that the Republican president, George H.W. Bush, vowed to veto the abortion rights bill if it passed. President Joe Biden would sign it, according to a formal "Statement of Administration Policy" issued Monday. "In the wake of Texas' unprecedented attack, it has never been more important to codify this constitutional right and to strengthen healthcare access for all women, regardless of where they live," the statement said.
Bush's and Biden's own abortion positions probably best demonstrate how much the parties have shifted on the issue. As a House member, the elder President Bush was the lead sponsor of the federal government's Title X family planning program — now strongly opposed by anti-abortion Republicans. Biden, a devout Catholic, opposed abortion rights early in his Senate career and has been criticized by activists for not uttering the word "abortion" as president until the Texas law took effect.
Biden, however, almost certainly will not get a chance to sign the Women's Health Protection Act. At least not anytime soon. Although the bill might have enough support to squeak through the House, support in the Senate remains far short of the 60 votes needed to break a filibuster.
That won't stop the fight from happening, though. What remains to be seen is which side in the abortion debate will ultimately win the battle for public support.
HealthBent, a regular feature of Kaiser Health News, offers insight and analysis of policies and politics from KHN's chief Washington correspondent, Julie Rovner, who has covered healthcare for more than 30 years.
Two of America's toughest problems can be tempered with one solution.
The baby boom generation is graying, creating an ever-larger population of older people, many isolated, whose needs the nation is ill equipped to meet or even monitor.
Meanwhile, the U.S. Postal Service has gone $160 billion into debt, in part as digital communications have replaced snail mail. This year it has requested two rate increases for stamps and other services, bringing the price of a first-class stamp to 58 cents. It is running an aggressive TV ad campaign, presumably to build support for Congress to step in with some kind of rescue.
So here's a potential win-win solution: Have letter carriers spend less time delivering mail, much of which now involves fliers and solicitations. Instead, include in their responsibilities — "the swift completion of their appointed rounds" — home visits and basic health checks on the growing population of frail and elderly.
So far, other solutions to fill the need for home healthcare have proved elusive. President Joe Biden proposed $400 billion in his initial infrastructure plan to improve services for the homebound elderly, a feature that Congress didn't retain. But Democrats' congressional reconciliation budget resolution, currently under debate, could allot money to the cause.
Meanwhile tens of millions of older Americans — the "old old" — are not so sick that they need a hospital but are unable to live safely at home without help. In Maine, the state with the oldest population, an estimated 10,000 hours of needed and approved home care is not provided every week because of a dearth of workers. That, for example, leaves patients with early dementia fending for themselves at great risk. People who need help preparing medicine or meals can be missing both.
Postal workers are already on virtually every block of America six days a week. They are "people people," as the recent TV ads portray, often beloved by their customers.
Yes, letter carriers are already busy, in part because of the volume of package deliveries, which jumped during the pandemic. But what about scrapping the idea of everyday delivery? That too was suggested by the agency's inspector general, a decade ago. Mail could be delivered just a few times a week, say, every other day. And on the off days, presto — we get a new on-the-ground home health workforce.
They could do home visits, to redress an epidemic of loneliness among older homebound Americans and check on whether a customer has an adequate supply of food and medicines. With a bit of retraining, they could check and record blood pressure, test blood sugar levels in people with diabetes and even administer pills.
Letter carriers already effectively serve as informal watchdogs, noticing if an older client hasn't picked up mail, for example. In some parts of the country, that function is formalized under a voluntary program called Carrier Alert, in which the Postal Service notifies a participating service agency, noted Brian Renfroe, executive vice president of the National Association of Letter Carriers.
But the USPS could be paid, by the government or by individuals, for this and other valuable services.
In France, since 2017, families have been able to pay a small monthly fee to La Poste — about 20 euros or $24 — to have home check-ins for an older relative. The service, called Watch Over My Parents, offers one to six visits per week, and the postal worker reports the resident's condition to the client each time.
Japan launched a similar postal program through a public-private partnership in 2017, to underwrite paid, monthly, half-hour visits (a friendly chat and health check) with members of the aging at-home population.
The post office's essential functions — like delivering the federal government's $1,200 pandemic relief checks, mail-in ballots and prescription medicines — are too important to lose. And USPS finances have improved recently, in part because of package deliveries and a $10 billion loan through the 2020 American Recovery and Reinvestment Act.
But when was the last time you ran to the mailbox to hear from a friend, check the news, or collect a bank statement or bill? It just makes sense financially and socially for the agency to evolve to meet the nation's current needs.
Solving that requirement will take congressional intervention; changes will also be needed in a law that currently requires six-day-a-week delivery and generally precludes the USPS from offering "nonpostal" products. Bipartisan legislation introduced in the Senate this year seeks to loosen the latter restriction to help the USPS earn money from services of "enhanced value to the public" (like selling hunting and fishing licenses).
Today, the postal service delivers vast amounts of "junk mail," also called direct mail. Companies spend about $167 annually on direct mail per person, yielding good returns, the industry says. But much of it ends up unread and unopened in the trash or recycling bin, an environmental nightmare.
Why not instead redeploy some of the U.S. Postal Service's vast supply of human resources to deliver a service our aging population — and our country — desperately needs?
In a back-to-the-future twist on birth trends, California is seeing a sustained rise in the number of women choosing to deliver their babies in settings other than a hospital, a shift that accelerated as the pandemic created more risky and onerous conditions in many hospitals.
About 5,600 people gave birth outside a hospital in California in 2020, up from about 4,600 in 2019 and 3,500 in 2010. The shift took place during a widespread "baby bust," so the proportion of births outside hospitals rose from 0.68% in 2010 to 1.34% in 2020, according to a KHN analysis of provisional data from the California Department of Public Health. The proportion of births outside hospitals stayed relatively high — 1.28% — from January through July 2021.
From 2009 to 2019, the proportion of births nationwide outside hospitals rose from 1.01% in 2009 to 1.56% in 2019. Nationwide data for 2020 and 2021 is not yet available.
Births away from hospitals usually take place with the help of licensed midwives working at the homes of clients or at free-standing "birth centers." In either setting, expectant parents typically meet with midwives several times during the pregnancy to get comfortable, express their hopes for the pregnancy and learn about the birthing process.
Intentional at-home births and deliveries at midwife-run birthing centers are typically restricted to "low-risk" pregnancies. Women giving birth in those settings generally do not have serious preexisting health conditions like diabetes or high blood pressure that could complicate their babies' births; they are giving birth to one child — no twins or triplets; and they are not expected to undergo a breech delivery, in which the baby emerges feet first, said Erina Angelucci, a certified nurse midwife at Best Start Birth Center in San Diego.
Midwives interviewed said they've heard from far more women in recent years turning to home births to avoid epidurals, induced labor and other invasive procedures common in hospital delivery rooms.
"I think people are looking to be more empowered in their birth and less 'just go along with whatever happens,'" said Shari Stone-Ulrich, a certified nurse midwife and midwife services clinical director at Best Start.
Many people want to avoid cesarean sections unless absolutely necessary, several midwives said. About 30% of births in California hospitals last year were via C-section, though that figure has dropped some in recent years, state data shows.
"For first-time moms, C-sections in hospitals are very high," said Miriam Singer, 32, who gave birth to her son, Eitan, at Best Start a few weeks ago. "So, knowing that the birth center is going to work with you and understand it's going to be a longer process and just make sure everything's going well, you really minimize your chances of having a C-section or an emergency situation."
Singer has three older children, ages 4, 6 and 9. Three of her kids were born in a free-standing birth center and one was born at home.
"Birth is just a very natural part of life, and it should be approached as something that is natural, and we should follow our body and listen to our body going through the process," she said. "I find the approach maybe in the hospitals a little bit more like it's an emergency."
As the coronavirus swept across California, families sought births outside hospitals for other reasons. Some didn't want to give birth in a setting where they feared contracting COVID-19. Others bristled at rules restricting when partners and family members could be present during labor.
"The home-birth practices were just filled to capacity immediately," said Kaleem Joy, a certified professional midwife and clinical director at California Birth Center in Rocklin. More recently, when some local hospitals announced they would again restrict visitors, "we went from having maybe six to 10 calls in a week to … I think we had a hundred in a day," Joy added.
State health data show positive outcomes for the vast majority of out-of-hospital births. However, those figures don't account for the fact that complicated, risky deliveries are, when feasible, transferred to a hospital.
A 2015 study in the New England Journal of Medicine found that planned out-of-hospital births in Oregon were associated with higher rates of perinatal death and neonatal seizures than hospital births, though such outcomes were rare in either setting. On the other hand, the study also found that planned out-of-hospital births led more often to unassisted vaginal deliveries and lower rates of obstetrical procedures.
Out-of-hospital birth rates ranged widely among California's urban and rural counties. These births were most prevalent in Nevada County, a rustic north state community known for its bohemian enclaves and passionate home-schooling movement. About 1 in 10 mothers gave birth at home last year in Nevada County. Four other largely rural Northern California counties also saw notably high rates: Tuolumne (6.8%), Mendocino (6.6%), Shasta (5.4%) and Humboldt (5.3%).
Among more populous counties with at least 2,500 births in 2020, the highest rates of out-of-hospital deliveries were in Sonoma (3.6%), Placer (2.9%) and Santa Barbara (2.1%). Rates were lowest in the largely agricultural Central Valley, particularly in Tulare, Merced, Solano, Fresno, San Joaquin and Kern counties.
The analysis also revealed racial and educational disparities between people giving birth in a hospital and those delivering at home or in a free-standing birth center last year.
Whites gave birth outside hospitals at a rate twice that of African Americans, about four times that of Hispanics and about six times that of Asians. In addition, people with a four-year college degree gave birth outside hospitals at a rate almost three times that of people without a four-year degree, state figures show.
Those numbers likely reflect long-standing socioeconomic disparities in healthcare that are exacerbated by the unwillingness of some insurance companies to cover births outside a hospital, said Katherine Hemple, a legislative consultant for the California Association of Licensed Midwives.
Also, Medi-Cal, the public insurance program for low-income Californians, typically does not cover at-home births, a policy that is the subject of intense debate. The program is more likely to cover deliveries in midwife-run birthing centers.
A client paying with cash for a delivery at the California Birth Center or Best Start Birth Center will be charged around $8,000, officials at those facilities said. By comparison, the average out-of-pocket cost for families nationwide with employer-based insurance giving birth in a hospital was about $4,500, according to a 2020 study in the journal Health Affairs.
Rosanna Davis, a certified professional midwife and president of the board of directors of the California Association of Licensed Midwives, said the preference for out-of-hospital births would increase even faster if the state and insurance companies offered more financial support for the choice.
"There are significant numbers of people who would choose midwife care," she said, "but the access is limited."
Phillip Reese is a data reporting specialist and an assistant professor of journalism at California State University-Sacramento.
Three physicians in this article are members of the "Disinformation Dozen," a group of top superspreaders of COVID vaccine misinformation on social media.
This article was published on Wednesday, September 22, 2021 in Kaiser Health News.
Earlier this month, Dr. Rashid Buttar posted on Twitter that COVID-19 "was a planned operation" and shared an article alleging that most people who got the COVID vaccine would be dead by 2025.
His statement is a recent example in what has been a steady stream of spurious claims surrounding the COVID vaccines and treatments that swirl around the public consciousness. Others include testimony in June by Dr. Sherri Jane Tenpenny before Ohio state legislators that the vaccine could cause people to become magnetized. Clips from the hearing went viral on the internet. On April 9, 2020, Dr. Joseph Mercola posted a video titled "Could hydrogen peroxide treat coronavirus?" which was shared more than 4,600 times. In the video, Mercola said inhaling hydrogen peroxide through a nebulizer could prevent or cure COVID.
These physicians are identified as members of the "Disinformation Dozen," a group of top superspreaders of COVID vaccine misinformation on social media, according to a 2021 report by the nonprofit Center for Countering Digital Hate. The report, based on an analysis of anti-vaccine content on social media platforms, found that 12 people were responsible for 65% of it. The group is composed of physicians, anti-vaccine activists and people known for promoting alternative medicine.
The physician voices are of particular concern because their medical credentials lend credence to their unproven, often dangerous pronouncements. All three continue to hold medical licenses and have not faced consequences for their COVID-related statements.
But leaders of professional medical organizations increasingly are calling for that to change and urging medical oversight boards to take more aggressive action.
In July, the Federation of State Medical Boards, the national umbrella organization for the state-based boards, issued a statement making clear that doctors who generate and spread COVID misinformation could be subject to disciplinary action, including the suspension or revocation of their licenses. The American Board of Family Medicine, American Board of Internal Medicine and American Board of Pediatrics issued a joint statement Sept. 9 in support of the state boards' position, warning that "such unethical or unprofessional conduct may prompt their respective Board to take action that could put their certification at risk."
And the superspreaders identified by the center's report are not alone. KHN identified 20 other doctors who have made false or misleading claims about COVID by combing through published fact checks and other news coverage.
Two of the doctors mentioned by name in this article responded to requests for comment. Mercola offered documents to rebut criticisms of his hydrogen peroxide COVID treatment and took issue with the center's "Disinformation Dozen" report methodology. Buttar defended his positions, saying via email that "the science is clear and anyone who contests it, has a suspect agenda at best and/or lacks a moral compass." He also pointed to data from the Centers for Disease Control and Prevention's Vaccine Adverse Event Recording System, consideredinconclusive by many experts.
Since the onset of the COVID pandemic, misinformation has been widespread on social media platforms. And many experts blame it for undermining efforts to curb the coronavirus's spread. A recent poll showed that more than 50% of Americans who won't get vaccinated cited conspiracy theories as their reasons — for example, saying the vaccines cause infertility or alter DNA.
Some physicians have gained notoriety by embracing COVID-related fringe ideas, quack treatments and falsehoods via social media, conservative talk shows and even in person with patients. Whether promoting the use of ivermectin, an anti-parasitic drug for animals, or a mix of vitamins to treat COVID, doctors' words can be especially powerful. Public opinion polls consistently show that Americans have high trust in doctors.
"There is a sense of credibility that comes with being a doctor," said Rachel Moran, a researcher who studies COVID misinformation at the University of Washington. "There is also a sense they have access to insider info that we don't. This is a very confusing time, and it can seem that if anyone knows what I should be doing in this situation, it's a doctor."
While COVID is a novel and complicated infectious disease, physicians spreading misinformation generally have no particular expertise in infectious diseases. Dr. Scott Atlas, who endorsed former President Donald Trump's unproven statements about the course of the pandemic, is a radiation oncologist.
Traditionally, the responsibility of policing physicians has fallen to state medical boards. Beyond overseeing the licensing process, these panels investigate complaints about doctors and discipline those who engage in unethical, unprofessional or, in extreme cases, criminal activity. Any member of the public can submit a complaint about a physician.
"The boards are relatively slow and weak and it's a long, slow process to pull somebody's license," said Arthur Caplan, founding head of the Department of Medical Ethics at New York University. "In many states, they have their hands full with doctors who have committed felonies, doctors who are molesting their patients. Keeping an eye on misinformation is somewhat down on the priority list."
To date, only two doctors have reportedly faced such sanctions. In Oregon, Dr. Steven LaTulippe had his license suspended in December 2020 for refusing to wear a face mask at his clinic and telling patients that masks were ineffective in curbing the spread of COVID, and even dangerous. Dr. Thomas Cowan, a San Francisco physician who posted a YouTube video that went viral in March 2020 stating that 5G networks cause COVID, voluntarily surrendered his medical license to California's medical board in February 2021.
Dr. Humayun Chaudhry, president of the Federation of State Medical Boards, however, said it's possible some doctors could already be the subject of inquiries and investigations, since these actions are not made public until sanctions are handed down.
KHN reached out to the medical and osteopathic boards of all 50 states and the District of Columbia to see if they had received COVID misinformation complaints. Of the 43 that responded, only a handful shared specifics.
During a one-week period in August, Kansas' medical board received six such complaints. In all, the state has received 35 complaints against 20 licensees about spreading COVID misinformation on social media and in person. Indiana has received about 30 in the past year. South Carolina said it had about 10 since January. Rhode Island didn't share the number of complaints but said it has taken disciplinary action against one doctor for spreading misinformation, though it hasn't moved to suspend his license. (The disciplinary measures include a fine, a reprimand on the doctor's record and a mandate to complete an ethics course.) Five states said they had received only a couple, and 11 states reported receiving no complaints regarding COVID misinformation.
Confidentiality laws in 13 states prevented those boards from sharing information about complaints.
Social media companies have also been slow to take action. Some doctors' accounts — specifically those among the Disinformation Dozen — have been suspended, but others are still active and posting misinformation.
Imran Ahmed, CEO of the Center for Countering Digital Hate, said social media platforms often don't consistently apply their rules against spreading misinformation.
"Even when it's the same companies, Facebook will sometimes take posts down, but Instagram will not," Ahmed said, referring to Facebook's ownership of Instagram. "It goes to show their piecemeal, ineffective approach to enforcing their own rules."
A Facebook spokesperson said the company has removed over 3,000 accounts, pages and groups for repeatedly violating COVID and vaccine misinformation policies since the beginning of the pandemic. Buttar's Facebook and Instagram pages and Tenpenny's Facebook page have been removed, while Mercola's Facebook posts have been demoted, which means fewer people will see them. Tenpenny and Mercola still have Instagram accounts.
Part of the challenge may be that these doctors sometimes present scientific opinions that aren't mainstream but are viewed as potentially valid by some of their colleagues.
"It can be difficult to prove that what is being said is outside the range of scientific and medical consensus," said Caplan. "The doctors who were advising Trump — like Scott Atlas — recommended herd immunity. That was far from the consensus of epidemiologists, but you couldn't get a board to take his license away because it was a fringe opinion."
Even if these physicians don't face consequences, it is likely, experts said, that the public health will.
"Medical misinformation doesn't just result in people making bad personal and community health choices, but it also divides communities and families, leaving an emotional toll," said Moran, the University of Washington researcher. "Misinformation narratives have real sticking power and impact people's ability to make safe health choices."
President Joe Biden's failure to name someone to lead the Food and Drug Administration, more than 10 months after the election, has flummoxed public health experts who say it's baffling for the agency to be without a permanent leader during a national health crisis.
The pandemic has taxed the FDA, an 18,000-person agency whose chiefs have traditionally received bipartisan backing during the Senate confirmation process. Many leaders in public health, industry and consumer groups agree that Biden's foot-dragging on finding a new director has demoralized the staff and sent the wrong message about the agency's importance, even as the toll of COVID-19 mounts, with an average of 130,000 new cases and 1,500 deaths daily, according to the Centers for Disease Control and Prevention.
It's a tough job in normal times, observers say, and at the moment may be the worst top job in Washington. At the heart of the tension is finding a nominee who balances the agency's dual responsibilities of protecting public health while also working with the drug, medical device and other industries to approve products and treatments for market. Meanwhile, the agency has been mired in controversies related to drug approvals and COVID vaccines, and discord over decisions has spilled into public view.
FDA commissioner is a "particularly rough job in wartime," said Steven Grossman, executive director of the Alliance for a Stronger FDA, an outside organization consisting of industry, research and other groups, which pushes for Congress to increase agency funding. "It is a much more difficult post to fill than it appears to the eye."
Dr. Janet Woodcock, an agency veteran of three decades, has for months led as acting commissioner. She commands broad respect. But her perceived closeness to the drug industry, particularly with respect to the agency's role in the opioid crisis, led some Senate Democrats to come out against her official assumption of the role. Biden would need all Democrats on board or some Republican senators to back his choice to get the votes for confirmation.
In December, Biden announced other top health appointees who would helm his pandemic response, including Health and Human Services Secretary Xavier Becerra, Surgeon General Vivek Murthy and CDC Director Rochelle Walensky. HHS oversees the FDA — as it does the office of the Surgeon General, the CDC and the National Institutes of Health.
But still no sign of an FDA nomination. Biden officials reportedly considered multiple potential candidates throughout the spring, including Woodcock; former top FDA official and Maryland health secretary Joshua Sharfstein; former FDA official Michelle McMurry-Heath; and Scripps Research Translational Institute director Dr. Eric Topol (who confirmed to KHN he wasn't interested). Then the process seemed to deadlock.
"People are just flabbergasted," said Dr. John Whyte, chief medical officer of WebMD and former FDA official. "We don't even have rumors of viable candidates."
Many of the agency's other critical responsibilities require sustained leadership even as the FDA urgently vets COVID treatments, tests and vaccines, according to people in public health, the healthcare industry and consumer groups. The FDA oversees much of the nation's food supply and the regulation of tobacco products, and reviews everything from stents and catheters to cancer drugs.
Long-term decisions on tobacco regulation can't wait, said Matthew Myers, president of the Campaign for Tobacco-Free Kids, which has pushed the FDA to move quickly to implement a ban on menthol cigarettes — something it announced in April — and decide which e-cigarettes can stay on the market. This month the agency punted on whether it would ban the sale of e-cigarettes from several major companies, including Juul, the largest maker of such products.
"What the FDA does over the next weeks or months with regard to e-cigarettes will determine whether we have a decades-long youth e-cigarette epidemic or whether we reverse it now," Myers said. "Waiting for a new commissioner is not an option."
He and others conceded that, regardless of qualifications, an acting commissioner's ability to set priorities is diminished. That adds to anxiety about a leadership vacuum, even though few doubt Woodcock's expertise.
"One significant disadvantage to being 'acting' is there is no time frame of how long that individual will be in that position," said Dr. Andrew von Eschenbach, FDA commissioner in the George W. Bush administration. As important work is executed, "there is no certainty" how long an acting leader is "going to be there" to see it through, he said. "That's an instability that is very, very difficult to deal with."
For agency staffers, it stings to see other physicians in the Biden administration speak publicly on issues squarely in the agency's purview, said Stacy Cline Amin, a partner at law firm Morrison & Foerster and former chief counsel of the agency.
"It's been a morale hit for FDA," she said.
Under federal law, Woodcock can serve as acting commissioner until mid-November unless Biden nominates a permanent commissioner, in which case she can remain until that person is confirmed by the Senate.
"People are anxious," said Ellen Sigal, founder of the influential nonprofit Friends of Cancer Research, which receives funding from the pharmaceutical industry and supported Woodcock for the job. "Is it going to be someone that knows the agency? Is it going to be someone that people really respect and really want to work with?"
The FDA is overwhelmingly run by career scientists whose jobs don't depend on who wins the White House. Any Senate-confirmed leader largely defers to the scientists who run FDA divisions to make decisions on products, according to former officials and experts with knowledge of the agency's inner workings. For example, an FDA spokesperson said Woodcock was not involved in the controversial decision to approve Aduhelm, a costly Alzheimer's drug manufactured by Biogen that went to market even though experts say there's little evidence it works. But in July, the lingering controversy led Woodcock to ask the HHS Office of Inspector General to "conduct an independent review and assessment of interactions between representatives of Biogen and FDA during the process that led to the approval of Aduhelm."
A leader appointed by the president and confirmed by the Senate has clout in setting priorities, hiring staff and making long-term decisions.
"The commissioner has obviously tremendous influence … not on a product-by-product basis but what the philosophy is," related to the regulatory process, said Scott Whitaker, president and CEO of AdvaMed, which lobbies for the medical device industry. The expressed paradigm "can impact how you think about developing products."
Others said Biden's speed in announcing a nominee is less important than selecting the right one, a calculation that's especially fraught given the agency's recent controversies.
Chief among them was the criticism from several scientists after the Biden administration announced a plan for widespread COVID "booster" shots beginning Sept. 20, well before agency scientists had finished necessary reviews. Woodcock had signed onto an HHS statement announcing the plan, but some experts said the proposal came too far ahead of the science and unfairly jammed her staff. Two veteran FDA officials who have announced their retirements were part of an international group of scientists that published an essay in The Lancet questioning whether the general public needed additional vaccine doses at this time.
The FDA was expected to authorize booster shots for high-risk patients and those 65 and older, following the recommendation Friday of an advisory panel that overwhelmingly rejected the administration's initial plan to offer extra shots for the general population, citing a need for additional research.
The White House didn't respond to questions about why Biden hasn't nominated someone as FDA commissioner or set a timeline for doing so.
"If it takes a little longer to get the right person who's going to be more aligned in protecting public health and represent interests of the public, as opposed to the interest of industry, which is what the case has been for many years under Dr. Woodcock, then it may be worth the wait," said Dr. Michael Carome, director of the health research group at Public Citizen, a liberal advocacy group that opposed Woodcock's nomination. The FDA referred a request for comment to the White House, which didn't respond.
Sigal sees it differently.
"FDA approves drugs, and they have to work with industry," she said. "The fact that you work with industry on drug development or on diagnostics with developers, or you work with people that are manufacturing food, with manufacturers or whatever — it's what the agency does."
BILLINGS, Mont. — Nurses fill the hospital room to turn a patient from his stomach to his back. The ventilator forcing air into him is most effective when he's on his stomach, so he is in that position most hours of the day, sedated and paralyzed by drugs.
Lying on his stomach all those hours has produced sores on his face, and one nurse dabs at the wounds. The dark lesions are insignificant given his current state, but she continues just the same, gently, soothingly, appearing to whisper to him as she works.
The man has been a patient at Billings Clinic for nearly a month, most of that time in the hospital's intensive care unit. He is among other patients, room after room of them, with the same grim tubes inserted down their throats. They have COVID-19 — the vast majority unvaccinated against the virus, the hospital says. Visitors generally aren't permitted in these rooms, but the man's mother comes most days to gaze through a glass window for the allowed 15 minutes.
This all happened Friday. He was dead, at age 24, by Sunday morning.
The hospital's morgue cart arrived at the ICU — as it frequently has these days — then the room was sterilized, another patient took the man's place, and the cycle began again. In the past week, 14 people have died of COVID here, the state's largest hospital.
"I do feel a little hopeless," said Christy Baxter, the hospital's director of critical care.
The situation has played out in hospitals around the nation since 2020. But now Montana is a national hot spot for COVID infections, recording the highest percentage increase in new cases over the past seven days. The state announced 1,209 new cases on Friday, and Yellowstone County, home to Billings Clinic, is seeing the worst of it. Last week, the county had 2,329 active cases, more than the next two counties combined.
What's different from the early scenes of the pandemic is the public's response. Not so long ago, the cheers of community support could be heard from the hospital parking lot. Now, tensions are so strained that Billings Clinic is printing signs for its hallways, asking that the staff members not be mistreated.
The ICU here has space for 28 patients but last Friday was operating at 160% capacity, Baxter said. To handle the overflow, nurses elsewhere provide care beyond their training as COVID patients fill other parts of the hospital. In the lobby of the emergency department, rooms roughly 6 feet by 6 feet have been fashioned with makeshift plastic walls. Ten members of the Montana Army National Guard arrived last week to help however they can. Hospital staffers volunteer to sit with dying patients. Beds line hallways.
"The problem is," said Brad Von Bergen, the hospital's ER manager, "we are running out of hallways."
The hospital announced it may soon implement "crisis standards of care," which basically means it will ration its equipment, staff and medicine, giving preference to those it can most likely save, regardless of vaccination status. It's an ugly system, abhorred by those who will wield it, with tiebreakers in place to decide who potentially lives and dies. Other hospitals in Montana have taken similar steps.
An overcrowded hospital also means that a person ― say, one injured in a car crash in rural eastern Montana and needing advanced hospitalization ― won't be able to get that care at Billings Clinic.
"We are at the point where we are not confident going forward that we can continue to meet all patients' needs," said Dr. Nathan Allen, the medical ethicist for Billings Clinic and its department chair for emergency medicine. "And that's heartbreaking."
"Nobody wants to be in a position where we may have to ration healthcare and potentially remove a ventilator from one patient who would likely die and give it to another," said Dr. Scott Ellner, the hospital's CEO. "Are we there? I would say we are very close."
To some extent, that rationing is already happening. A patient still hospitalized here with COVID might have benefited from a machine, known as an ECMO machine, needed to keep his heart and lungs functioning. Operating that machine, though, requires at least one nurse, 24 hours a day, usually for two to three weeks. Typically, it would be a last-ditch effort for the most critical of patients. Even with that care, the prognosis for the middle-aged man would be poor. Without it, Baxter said, he will assuredly die.
"The reality is I can't staff that," Baxter said. "Do you give that optimal care to one patient or do you give great care to five?"
Billings Clinic would hire more than 100 additional nurses if it could. The staffing shortage is not unique to this hospital; it's nationwide, meaning the needed help isn't arriving anytime soon. Baxter tells the story of a young nurse who quit, saying he had grown tired of lying to patients he knew would die.
"The patients look at you with that fear in their eyes and say, 'Am I going to make it?'" Baxter said. "You want to encourage them to not give up hope, but you also know the chances of survival are going to be slim."
Recently, a patient's dying wish was to have their preschool-age child come and sit with them, to see them one last time. That typically wouldn't be allowed, but an exception was made, with staffers at the hospital draping the child in oversized protective clothing, goggles and an N95 mask. Afterward, the nurse and doctor sobbed with the patient.
"The moral distress of working in healthcare is for many, many people extremely high right now," said Allen.
Intensifying that, he said, are patients or their loved ones mistreating doctors and nurses. Threats have on occasion required a police response. Screaming, profanity-laden insults are a daily occurrence. One patient threw his own feces at a doctor. Some, even in the face of an intubation tube, question the need to be vaccinated or the effectiveness of the medicine being prescribed.
Dr. Sara Nyquist, an emergency medicine physician, said she has been asked by a patient if she is a Republican or a Democrat.
"I said, 'I am your doctor,'" she recalled. "You do wonder how we got here."
Ellner, the clinic's CEO, said he doesn't understand what happened to civility. "There is a part of the society that wants to pretend that the COVID surge isn't really happening," he said. "But this is our reality every single day."
Jennifer Tafelmeyer, a nurse in the hospital's cardiovascular unit, said the best part of her job before the pandemic was helping patients improve, walking them down hallways, talking about diet and exercise, and eventually escorting them to the front door. That hasn't happened in a long time.
"We just don't get the wins," she said.
As she told the story, she stopped to wipe a tear. Moments before, she had learned that one of the patients on this floor was not expected to survive the night.
Allen predicted Billings Clinic hasn't yet seen the worst of the recent surge in infections.
"We are still seeing growing numbers in community cases," he said. "And we know hospitalizations lag behind new diagnoses. Unfortunately, it can absolutely get worse than where it is at."
In the meantime, he said, he expects the doctors and nurses here will rally as they have, taking comfort from words of thanks from many patients and gestures like a father bringing pizza to the emergency department as a show of appreciation for the care given his child.
"The most difficult things have been the big things," Allen said, "and the most inspiring things have been the little things."
In 2004, 24-year-old Manny Lanza urgently needed surgery for a life-threatening brain condition. But he didn't have insurance, so his hospital refused to schedule the treatment — until it was too late. Manny died waiting.
In the months that followed, Manny's parents, Reynaldo Prieto and Levia Lanza, fought to make their son's story known — and to make sure it didn't happen again. They came up empty … until a reporter from the New York Post took their call. Then, things changed fast.
What Manny's parents didn't know: The fight had already begun years before Manny's illness. Folks like Elizabeth Benjamin, then a Legal Aid attorney, and Dr. Rosemarie Guercia, a retired Long Island, New York, physician, had spent those years campaigning for laws that would require hospitals to extend financial aid to uninsured patients. And with Manny's story in the news, it was finally their time.
Poor care coordination is one of the many shortcomings of Medi-Cal, which covers over a third of the state's population and nearly 40% of children under 18.
This article was published on Tuesday, September 21, 2021 in Kaiser Health News.
When Denise Williams' baby boy was 2 months old, she became alarmed by a rattling sound in his lungs and took him to the emergency room. While undergoing treatment, he spiraled into a disabling neurological disorder.
Now 2 years old, Markeano is attached to breathing and feeding tubes. He can't walk or move his arms.
"If I want him to sit up, I have to sit him up. If I want him to play with a car, I've got to put his hand on the car and move it back and forth," said Williams, 38, who lives with Markeano, her four other children and her husband, Marcus, in Adelanto, California, a small city in the High Desert region of San Bernardino County.
Markeano is enrolled in the Inland Empire Health Plan, a county-run managed-care insurer that provides coverage under Medi-Cal, California's version of the federal Medicaid program for people with low incomes or disabilities. He also receives care through California Children's Services, which covers kids with serious conditions.
But Williams still finds it difficult to get her son the specialized care he needs. What's worse, neither his insurers nor his doctors take responsibility for managing his care, she said. "No one coordinates the care except for me."
Poor care coordination is one of the many shortcomings of Medi-Cal, which covers over a third of the state's population and nearly 40% of children under 18. Advocates, patients and even the state auditor say Medi-Cal has failed to hold accountable the managed-care health plans that cover almost 12 million of its nearly 14 million enrollees.
To remedy these failings, the state has begun an ambitious contracting process that aims to commit the health plans to better service. The state's exact strategy is unclear. But it is expected to result in new rules for Medi-Cal managed care. The nine commercial insurers, including giants Health Net, Anthem Blue Cross, and Blue Shield of California, will have to bid for new contracts intended to set more rigorous care standards. While their members account for fewer than one-third of managed-care enrollees, the companies have made nearly $3 billion from Medi-Cal since 2014.
Non-commercial plans like the Inland Empire Health Plan, which are established by county authorities, won't have to submit bids, but they will be required to sign the new contracts.
"The state has had a lot of difficulty — because of skill and will — in managing and enforcing the terms of its existing contracts," said Alex Briscoe, head of the California Children's Trust and former director of Alameda County's Healthcare Services Agency. "This represents an opportunity not only to redesign the contracts but also to reimagine the state's role in enforcing them."
It's also an opportunity for the state to make a statement in selecting plans.
"Some are doing worse than others, and that should be taken into account in terms of decisions as the plans bid," said Edwin Park, a California-based research professor at the Georgetown University Center for Children and Families.
Jacey Cooper, California's Medicaid director, said the state's focus will be assuring that plans provide access to care and are committed to improving the outcomes of Medi-Cal beneficiaries.
The recontracting process is intertwined with an ambitious $6 billion experiment to move Medi-Cal beyond medicine into the realm of social services.
'Deficient Oversight'
Data shows that Medi-Cal plans are failing enrollees in many ways. Patients often have long waits or travel times for medical appointments, and get fragmented services and poor information about their care. Some communities of color, as well as rural residents, receive lower-quality service than others.
Faulty treatment hits the 4.6 million kids in managed-care Medi-Cal particularly hard because children need a lot of routine care, and many are not getting it. In July, close to 500 advocacy and provider groups sent a letter to the Department of Healthcare Services, which runs Medi-Cal, urging it to make the managed-care plans improve pediatric care. "The deficiencies in the Medi-Cal managed care program contribute to health disparities for children across the state that can last a lifetime," they wrote. The new contracts, the letter said, should require health plans to fix the problem.
Federal law provides significant protection for all children in Medi-Cal and other state Medicaid programs. It requires coverage for regular checkups, immunizations, and other preventive and diagnostic care.
But state data shows that Medi-Cal managed-care plans often fail to meet these requirements. Only about one-quarter of infants and toddlers in Medi-Cal get the recommended number of well-child visits and screenings for developmental delays. The plans fall short on immunizations as well.
A 2019 report by the California State Auditor ranked California 40th among state Medicaid programs in use of preventive services by children.
The report blamed the state's poor performance on "deficient oversight of the managed care plans" and an insufficient number of healthcare providers willing to accept Medi-Cal's low payment rates.
"I don't see how we can have a high-performing Medi-Cal system that doesn't do well on those basic services for kids," said Mike Odeh, health policy director at Children Now, an Oakland-based advocacy group.
To be fair, Medi-Cal has had its share of successes, too, including early and robust expansion of enrollment under the Affordable Care Act, extension of coverage to large numbers of immigrants without legal documents, and pioneering programs that address not only medical and mental health but also the social and environmental circumstances of enrollees.
Nonetheless, Medi-Cal managed-care plans often earn poor to mediocre marks for the quality of their care. Meanwhile, the largest commercial plans have profited handsomely from the program, especially since the expansion of Medicaid in 2014. That helps explain why the rebidding process is such a sensitive matter for them. Health Net, Anthem Blue Cross, Molina Healthcare and Blue Shield of California all declined to discuss their bidding strategies with KHN.
Collectively, the commercial plans have generated $2.9 billion in net profits from Medi-Cal since fiscal year 2014, according to data provided by the state. Health Net, the state's largest commercial Medi-Cal insurer, with around 2 million enrollees, accounted for $2.1 billion of that amount. Anthem Blue Cross, the second-largest commercial Medi-Cal plan, with 1.3 million enrollees, accounted for $873 million.
An Anthem Blue Cross spokesperson noted that Medi-Cal managed-care plans are required by law to spend at least 85 cents of every dollar on medical care or efforts to improve care. That, along with other factors, limits the health plans' profits, he said.
Kaiser Permanente, which is at or near the top of Medi-Cal quality scores, has lost money in the program every year since 2014 — and before that, too.
Health Net and Anthem Blue Cross get poor to mediocre marks on key pediatric services in many counties, according to state data. Health Net Medi-Cal plans in Sacramento, Kern, Stanislaus and San Diego counties, for example, were at or near the bottom of the pack in timeliness of pediatric appointments.
A Health Net spokesperson said the company has improved over the past two years and now outperforms its competitors on state quality indicators in nine of the 13 counties where it operates.
The 2019 state audit, citing earlier concerns about incomplete and inaccurate reporting, noted that the integrity of the state's quality data can be hard to assess.
And non-commercial plans often have low scores, too. "Quality is stubbornly low across all plans in Medi-Cal. Nobody gets a pass here," said Cary Sanders, senior policy director at the California Pan-Ethnic Health Network.
The state rarely holds any of the plans fully to account, advocates and Medi-Cal experts say. The Department of Healthcare Services started imposing financial penalties for poor quality only in 2017, and since then it has levied only two such fines: one against Health Net for $335,000 and one against the publicly run Health Plan of San Joaquin for $135,000.
The department does require subpar performers to devise so-called corrective action plans, but critics say they rarely produce significant improvement.
Even if enforcement were effective, the standards for Medi-Cal plans are too low, advocates say. Until 2019, insurers needed to be only in the 25th percentile of Medicaid plans nationally to avoid corrective action. The department raised the bar to the 50th percentile in 2019 but has not enforced it so far because of the COVID-19 pandemic.
The department next year will begin penalizing any health plan that "fails to exceed, rather than just meet" the minimum performance level on any measure, said Cooper, the state's Medicaid chief. It will do so every year, rather than target only persistently poor performers, she said.
Pay for Performance
In June, the Department of Healthcare Services released preliminary details on the bidding process, outlining some of the new requirements. It expects to issue more details by year's end but won't announce plan selections until the end of 2022. The new contracts are slated to take effect Jan. 1, 2024.
But will the state lean hard enough on the plans? Based on the documents released so far, this could be a "potential missed opportunity," said Sanders. "There aren't enough teeth here to improve health plan accountability."
Other advocates cite what they say has been a cozy relationship between health plans and the state. "I just think the whole delivery system has historically been filled with a lot of politics, favoritism, good old boys," said Isabel Becerra, CEO of the Coalition of Orange County Community Health Centers, whose members provide Medi-Cal services in the county.
Some advocates and analysts say the best way for the state to hold the managed-care plans' feet to the fire is to tie the fixed monthly rates it pays them to their performance on a number of measures, including preventive services and health equity.
"If you want to change how they work, you have to change the incentives that drive them," said Briscoe, of the California Children's Trust.
Medicaid chief Cooper said her staff is working to link payment to quality and health equity.
Some advocates say the state should withhold payments from poorly performing plans. The plans, however, would prefer being rewarded for exceeding expectations to being dinged for failing to meet them.
A Communication Breakdown
The rebidding process is expected to reduce the number of insurance companies participating in Medi-Cal — and some experts say that's a good thing.
"The idea of competition is you're supposed to be competing on the basis of quality, but if there are too many choices beneficiaries aren't able to discern the differences," said Georgetown University's Park.
In some regions, the Medi-Cal health plans that contract directly with the state outsource care and administrative tasks to other plans or physician groups. L.A. Care, for example, farms out enrollees to subcontractors such as Kaiser Permanente, Anthem Blue Cross and Blue Shield of California. The Department of Healthcare Services says that in evaluating the bids it will look favorably on health plans that commit to keeping closer tabs on their subcontractors.
The state reports quality scores only for plans with which it contracts directly, and their data can be skewed by wide variation in the performance of the subcontractors.
Moreover, the divided responsibility between health plans and their subcontractors can confuse beneficiaries.
"The subcontractor says, 'No, call the plan' — and the plan says, 'Call the subcontractor,' and there's really no accountability," said Abigail Coursolle, a senior attorney at the National Health Law Program in Los Angeles.
Denise Williams faces a similar problem. She said the Inland Empire Health Plan does not communicate effectively — or at all — with California Children's Services or Markeano's doctors. As a result, she is saddled with hours of legwork to find care for her son, whether speech, swallowing and cognitive therapy or extra oxygen tanks to make sure he doesn't run out during long car trips to see his doctors.
"They tell me, 'Your pediatrician or neurologist should be doing this.' Then when I talk to the pediatrician and the neurologist, they say, 'Talk to your insurance,'" Williams said. "So it's like, 'I already talked to you guys. Can't you guys talk to each other — or can we get on a three-way? Because this is draining. I've got a kid that I need to take care of.'"
Inland Empire Health acknowledged the gaps in coordination among managed-care plans, California Children's Services and providers, saying it was "eager to embrace the care coordination improvements" that the state says it will require. The new contracts also will require plans to address some of the nonmedical problems that can compromise health, such as inadequate housing, unclean air and water, and food insecurity.
In addition to being predominantly poor, over two-thirds of Medi-Cal enrollees are from non-white communities that have historically been socially and economically marginalized — which is why the state says it will put a high priority on reducing healthcare inequities.
Denise Williams, who is Black, wonders if her travails are related to long-standing inequities.
"Sometimes I don't know if it's because of my color or what," she said. "I try to remain calm at all times, so that way it's not a stereotype of an angry Black lady or whatever. But at the same time, I'm my kid's only advocate, so if I never say nothing, my kid would just be lying in the bed all day."
California Healthline correspondent Angela Hart contributed to this report.