Critics declared Colorado’s new quasi-public option a failure this fall, before it was even available for purchase on the state’s Affordable Care Act health insurance marketplace. They seized on an October announcement from the state that premiums for individual coverage were rising by an average of 10% in 2023 despite the arrival of the much-anticipated Colorado Option, which was meant to drive down costs. What’s more, people in most counties had access to traditional plans that were cheaper than the new option.

Supporters warned against calling the Colorado Option a bust just yet. With open enrollment underway, consumers on the ACA marketplace can choose Colorado Option plans for the first time since the 2021 law that created them took effect. State officials are betting that people will look beyond the cost of the premiums.

“People vote with their premium dollars,” said Kyle Brown, deputy commissioner for affordability programs at the Colorado Division of Insurance. “When people have a chance to really understand the value of the benefits that are available with the Colorado Option, I think people will find it’s the right option for them.”

Colorado is only the second state to launch this type of hybrid insurance system — one in which private insurers must adhere to strict plan, price, and transparency requirements with vigorous state oversight — and this inaugural enrollment period will likely serve as a test case that steers similar efforts in other states.

The Colorado Option isn’t a true public option, the kind designed and run by the state to compete with private health insurance. Instead, state lawmakers, in an effort to force private insurance companies to offer more comprehensive coverage at lower prices, passed compromise legislation. That law directed the state to create a standard package of benefits with set deductibles and cost-sharing amounts that would then be offered by private health plans for individuals and small businesses.

Health insurers offering Colorado Option plans are required, after some accounting for inflation, to shave 5% off their 2021 premiums each year for three years, achieving a 15% total reduction. Starting next year, if insurers fail to meet those premium targets, the state will hold hearings to determine why and could set rates that insurers would pay hospitals and other providers under the plan.

The Colorado Association of Health Plans estimated that 90% of 2023 plans did not meet those premium reduction targets. But some did.

And some insurers lowered or maintained their premiums from 2022 levels even with inflation. Denver Health’s premiums are down 2.6% from 2022, and Kaiser Permanente’s remain roughly the same.

“We’re also seeing just by the introduction of the Colorado Option that plans are competing,” Colorado Option Director Kyla Hoskins said. “Are some plans lower than Colorado Option plans? They are, and I think for consumers that’s good. We’ve introduced competition.”

Brown said state officials were disappointed that many carriers didn’t meet the premium reduction targets, but he said 87% of Coloradans would have access to plans that met the law’s target of a 5% premium reduction when adjusted for inflation. That some plans hit the goal shows the targets were achievable, he said.

If everybody insured via the individual market were to switch from the plan they were enrolled in for 2022 to a Colorado Option plan, Brown said, those people would save a combined $14.7 million in premiums.

Amanda Massey, executive director of the Colorado Association of Health Plans, which has opposed the Colorado Option, said that most consumers choose plans based solely on the premium. Decisions made by the Division of Insurance in creating the standard plan increased premiums, she said. “The Colorado Option isn’t going to be the cheapest because it has very rich benefits,” Massey said. “The richer the benefit package, the more expensive it’s going to be. It’s simple math.”

Officials considered what benefits could help reduce health care disparities and set up the plan to address those. That led to unlimited free visits for primary care, mental health care, substance use, and perinatal services, as well as coverage of diabetes supplies like glucose monitors and syringes at no cost. Where they could, they implemented copays (a flat dollar amount) instead of coinsurance (a percentage of the total bill) to make costs more predictable for consumers.

“There are all these things that historically would have cost consumers money that are currently not going to under the Colorado Option plan,” said Mannat Singh, executive director of the Colorado Consumer Health Initiative, a consumer advocacy nonprofit that pushed for a public option plan.

The state also limited plans to using just 2% of premiums for profits or contingencies and capped administrative costs at 15%. Insurance companies have complained that the Colorado Option creates unfunded mandates, such as the requirement to collect demographic data on providers, which is a step toward creating culturally competent provider networks.

“For us to meet target reductions, you can’t add benefits and expect the cost to be less,” Massey said.

How much pressure insurers can put on hospitals and other providers to take smaller payments is unclear, particularly given the twin headwinds of inflation and staffing costs.

“It is a little disappointing that many of the insurers didn’t seem to try this year,” said Christine Monahan, an assistant research professor at Georgetown University’s Center on Health Insurance Reforms.

Next year, however, they might have added motivation. Plans that don’t meet the target reductions for 2024 premiums — a full 10% below 2021 premiums — will face a rate review hearing during which the Division of Insurance will explore why the targets weren’t met. The parameters of the rate hearing under the Colorado Option are still being finalized, but consumer advocates and health policy researchers expect the review will bring more visibility to how much insurers pay hospitals and health systems. That’s typically the kind of information plans and providers guard as trade secrets.

“It will not be the ideal scenario for a carrier to be brought into a rate hearing with the Division of Insurance if they don’t hit their targets next year,” said state Rep. Dylan Roberts, a Democrat who was elected to the state Senate in November and was a sponsor of the 2021 bill that created the Colorado Option. “So I think the incentive will be much stronger next year when they are pricing their plans.”

Division of Insurance officials said that the hearing process is an important tool for ensuring accountability but that they would prefer to see plans meet their premium reduction targets. “It’s an important aspect of the program that the free market be able to do this because when carriers and providers are working together, they can come up with more nuanced arrangements potentially than we can through a hearing,” Brown said.

All sides will now closely monitor the enrollment numbers for the Colorado Option plans. This year, the departure of two carriers, Bright HealthCare and Oscar Health, from the marketplace means that more consumers than usual will have to choose new plans. And when the covid-19 public health emergency eventually ends, thousands of Coloradans will no longer qualify for Medicaid and may be shopping for new coverage.

According to a report in The Colorado Sun, some health insurance brokers have accused the state of trying to steer consumers shopping for new coverage to Colorado Option plans. That included suggesting Colorado Options plans were the best fits for former Bright and Oscar enrollees and giving option plans top billing when consumers searched on the online marketplace. State Insurance Commissioner Michael Conway told the Sun the goal in prioritizing Colorado Option plans was to help people better compare coverage, and the state later changed its formula to sort plans by premium instead.

Monahan will be watching to see whether Denver Health and Kaiser Permanente, which took a relatively aggressive approach to reducing premiums for 2023, can attract those shoppers to their Colorado Option plans. “If they’re gaining market share, especially from all these lives that need to find a new plan,” she said, “then I think these other carriers are going to realize that they need to start playing ball as well and actually bring their rates down to stay competitive.”

Colorado is the second state to launch something resembling a public option, after Washington. Nevada is ramping up a similar approach, with a 2026 start date. And other states are keeping a close eye on what’s happening in Colorado, said Liz Hagan, director of policy solutions at United States of Care, a nonprofit that has pushed for public options across the country.

“Colorado is taking such an innovative approach and really thinking about rate review and requirements of plans in a way that other states would be very interested in taking either different components of or taking wholesale together,” she said.

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KHN senior correspondent Angela Hart appeared on Spectrum News 1’s “Los Angeles Times Today” on Nov. 29 to discuss her reporting on California’s pricey and ambitious experiment to transform its Medicaid program, called Medi-Cal.

The initiative, known as CalAIM, will provide some of Medi-Cal’s sickest and costliest patients with social services such as home-delivered healthy meals, help with housing move-in costs, and home repairs to make living environments safer for people with asthma.

But, as Hart noted, the reforms leave many patients behind. Hart spent time at MLK Community Hospital in South Los Angeles, where patients, health consumer advocates, and hospital executives told her that care hasn’t improved for the majority of patients, who don’t receive the new social services. They also told her that low reimbursement rates for doctors and other providers have created a “separate and unequal” system of care in a community that has disproportionately high rates of devastating chronic conditions like diabetes, liver disease, and high blood pressure.

Click here to watch Hart on “Los Angeles Times Today.”

Read Hart’s in-depth story about MLK hospital here, and peruse KHN’s other Medi-Cal coverage here.

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Nearly 6 million Americans have taken Paxlovid for free, courtesy of the federal government. The Pfizer pill has helped prevent many people infected with covid-19 from being hospitalized or dying, and it may even reduce the risk of developing long covid. But the government plans to stop footing the bill within months, and millions of people who are at the highest risk of severe illness and are least able to afford the drug — the uninsured and seniors — may have to pay the full price.

And that means fewer people will get the potentially lifesaving treatments, experts said.

“I think the numbers will go way down,” said Jill Rosenthal, director of public health policy at the Center for American Progress, a left-leaning think tank. A bill for several hundred dollars or more would lead many people to decide the medication isn’t worth the price, she said.

In response to the unprecedented public health crisis caused by covid, the federal government spent billions of dollars on developing new vaccines and treatments, to swift success: Less than a year after the pandemic was declared, medical workers got their first vaccines. But as many people have refused the shots and stopped wearing masks, the virus still rages and mutates. In 2022 alone, 250,000 Americans have died from covid, more than from strokes or diabetes.

But soon the Department of Health and Human Services will stop supplying covid treatments, and pharmacies will purchase and bill for them the same way they do for antibiotic pills or asthma inhalers. Paxlovid is expected to hit the private market in mid-2023, according to HHS plans shared in an October meeting with state health officials and clinicians. Merck’s Lagevrio, a less-effective covid treatment pill, and AstraZeneca’s Evusheld, a preventive therapy for the immunocompromised, are on track to be commercialized sooner, sometime in the winter.

The U.S. government has so far purchased 20 million courses of Paxlovid, priced at about $530 each, a discount for buying in bulk that Pfizer CEO Albert Bourla called “really very attractive” to the federal government in a July earnings call. The drug will cost far more on the private market, although in a statement to KHN, Pfizer declined to share the planned price. The government will also stop paying for the company’s covid vaccine next year — those shots will quadruple in price, from the discount rate the government pays of $30 to about $120.

Bourla told investors in November that he expects the move will make Paxlovid and its covid vaccine “a multibillion-dollars franchise.”

Nearly 9 in 10 people dying from the virus now are 65 or older. Yet federal law restricts Medicare Part D — the prescription drug program that covers nearly 50 million seniors — from covering the covid treatment pills. The medications are meant for those most at risk of serious illness, including seniors.

Paxlovid and the other treatments are currently available under an emergency use authorization from the FDA, a fast-track review used in extraordinary situations. Although Pfizer applied for full approval in June, the process can take anywhere from several months to years. And Medicare Part D can’t cover any medications without that full stamp of approval.

Paying out-of-pocket would be “a substantial barrier” for seniors on Medicare — the very people who would benefit most from the drug, wrote federal health experts.

“From a public health perspective, and even from a health care capacity and cost perspective, it would just defy reason to not continue to make these drugs readily available,” said Dr. Larry Madoff, medical director of Massachusetts’ Bureau of Infectious Disease and Laboratory Sciences. He’s hopeful that the federal health agency will find a way to set aside unused doses for seniors and people without insurance.

In mid-November, the White House requested that Congress approve an additional $2.5 billion for covid therapeutics and vaccines to make sure people can afford the medications when they’re no longer free. But there’s little hope it will be approved — the Senate voted that same day to end the public health emergency and denied similar requests in recent months.

Many Americans have already faced hurdles just getting a prescription for covid treatment. Although the federal government doesn’t track who’s gotten the drug, a Centers for Disease Control and Prevention study using data from 30 medical centers found that Black and Hispanic patients with covid were much less likely to receive Paxlovid than white patients. (Hispanic people can be of any race or combination of races.) And when the government is no longer picking up the tab, experts predict that these gaps by race, income, and geography will widen.

People in Northeastern states used the drug far more often than those in the rest of the country, according to a KHN analysis of Paxlovid use in September and October. But it wasn’t because people in the region were getting sick from covid at much higher rates — instead, many of those states offered better access to health care to begin with and created special programs to get Paxlovid to their residents.

About 10 mostly Democratic states and several large counties in the Northeast and elsewhere created free “test-to-treat” programs that allow their residents to get an immediate doctor visit and prescription for treatment after testing positive for covid. In Massachusetts, more than 20,000 residents have used the state’s video and phone hotline, which is available seven days a week in 13 languages. Massachusetts, which has the highest insurance rate in the country and relatively low travel times to pharmacies, had the second-highest Paxlovid usage rate among states this fall.

States with higher covid death rates, like Florida and Kentucky, where residents must travel farther for health care and are more likely to be uninsured, used the drug less often. Without no-cost test-to-treat options, residents have struggled to get prescriptions even though the drug itself is still free.

“If you look at access to medications for people who are uninsured, I think that there’s no question that will widen those disparities,” Rosenthal said.

People who get insurance through their jobs could face high copays at the register, too, just as they do for insulin and other expensive or brand-name drugs.

Most private insurance companies will end up covering covid therapeutics to some extent, said Sabrina Corlette, a research professor at Georgetown University’s Center on Health Insurance Reforms. After all, the pills are cheaper than a hospital stay. But for most people who get insurance through their jobs, there are “really no rules at all,” she said. Some insurers could take months to add the drugs to their plans or decide not to pay for them.

And the additional cost means many people will go without the medication. “We know from lots of research that when people face cost sharing for these drugs that they need to take, they will often forgo or cut back,” Corlette said.

One group doesn’t need to worry about sticker shock. Medicaid, the public insurance program for low-income adults and children, will cover the treatments in full until at least early 2024.

HHS officials could set aside any leftover taxpayer-funded medication for people who can’t afford to pay the full cost, but they haven’t shared any concrete plans to do so. The government purchased 20 million courses of Paxlovid and 3 million of Lagevrio. Fewer than a third have been used, and usage has fallen in recent months, according to KHN’s analysis of the data from HHS.

Sixty percent of the government’s supply of Evusheld is also still available, although the covid prevention therapy is less effective against new strains of the virus. The health department in one state, New Mexico, has recommended against using it.

HHS did not make officials available for an interview or answer written questions about the commercialization plans.

The government created a potential workaround when they moved bebtelovimab, another covid treatment, to the private market this summer. It now retails for $2,100 per patient. The agency set aside the remaining 60,000 government-purchased doses that hospitals could use to treat uninsured patients in a convoluted dose-replacement process. But it’s hard to tell how well that setup would work for Paxlovid: Bebtelovimab was already much less popular, and the FDA halted its use on Nov. 30 because it’s less effective against current strains of the virus.

Federal officials and insurance companies would have good reason to make sure patients can continue to afford covid drugs: They’re far cheaper than if patients land in the emergency room.

“The medications are so worthwhile,” said Madoff, the Massachusetts health official. “They’re not expensive in the grand scheme of health care costs.”

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Behind Florida’s decision to block clinical services for transgender adolescents is a talking point — repeated by the state’s governor and top medical authorities — that most cases of gender incongruence fade over time.

The Florida Board of Medicine voted Nov. 4 to approve a rule that barred physicians from performing surgical procedures on minors to alter “primary or secondary sexual characteristics” and from prescribing them medication to suppress puberty and hormones. The rule included an exception for patients who were already receiving those treatments. 

Two days later, Florida’s Republican governor, Ron DeSantis, said gender-affirming care is “an example of ideology overtaking the practice of medicine,” touting that he worked with the board to take a stand against it. 

“Over 80% of the dysphoria amongst teenagers resolves itself by the time they become older,” DeSantis said during a Nov. 6 campaign event. “So why are you mutilating their body parts?”

Earlier in the year, the Florida Department of Health used the statistic as it advised against medical transitioning for minors. The department’s April memo said that “80% of those seeking clinical care will lose their desire to identify with the non-birth sex.” 

Dr. Hector Vila, a Tampa anesthesiologist and member of the governor-appointed board, said he supported the rule because a “significant percentage” of transgender children will return to their assigned sex.

PolitiFact consulted with experts and data to determine whether gender incongruence will “resolve itself” for a large cohort of teenagers.

Those experts said Florida mischaracterized a statistic linked to an academic review from 2016. What’s more, one of the researchers whose work is cited as the statistic’s source has said the data he consulted is not “optimal” and can lead to “wrong inferences.”

The public comment period for the rule ended Dec. 5.

The 80% figure comes from a 2016 paper published in the International Review of Psychiatry.

Dutch health psychologist Thomas Steensma and Italian psychologist Jiska Ristori examined past studies on gender dysphoria, which describes the distress people may experience because of a discrepancy between their gender identity and the sex assigned to them at birth.

Not all transgender people experience or are diagnosed with gender dysphoria. Gender dysphoria diagnoses focus on gender identity-related psychological distress, not gender identity itself.

The researchers wanted to know whether people who experienced gender dysphoria as children still had it later in life. They looked at the outcomes for children involved with 10 studies conducted from 1968 to 2012 in the U.S., Canada, and the Netherlands.

Their review of the studies said they showed that gender dysphoric feelings went away for 85% of children “around or after puberty” — while acknowledging several limitations.

“There may be a number of arguments to nuance this high percentage of desistence,” the review read. “The lower persistence rates in the earlier studies, compared to the more recent studies after 2000, may be the result of the inclusion of less extreme cases in the earlier studies than in later studies.”

In other contexts, “desistence” can refer to an apparent end of gender variance and a return to an identity that aligns with the sex assigned at birth. In the paper, the researchers meant the lifting of dysphoric feelings.

Other experts mentioned concerns with the methodology of studies cited in the paper.

Dr. Kristin Dayton, a pediatric endocrinologist, said the studies had a small share of children assigned female at birth — and are thus not representative samples of the population. Eight of the 10 studies examined only children assigned male at birth.

At least six of the studies were conducted before the American Psychiatric Association developed a formal diagnosis for gender dysphoria in children. Some of the 10 studies did not include children who were referred to the studies by medical professionals.

A 1987 study, for instance, used advertisements to recruit children. Only 30% of the children examined had “frequently” stated a desire to be a girl. Experts said most of the children in that study wouldn’t have met the current criteria for gender dysphoria.

The diagnostic criteria for the condition include a “marked incongruence” between one’s experienced gender and assigned sex at birth lasting at least six months and a “strong desire to be of the other gender or an insistence that one is the other gender.”

Florida’s Department of Health and Board of Medicine misrepresented the review’s conclusion by stating 80% of children will “lose the desire” to identify with a sex not assigned at birth.

The 80% figure in the review did not reference children’s gender identities; it centered on the persistence and desistence of gender dysphoria in adulthood. Steensma later wrote that “using the term desistence in this way does not imply anything about the identity of the desisters.”

Although the review noted the studies found that gender dysphoria in childhood is “strongly associated” with a “lesbian, gay, or bisexual outcome,” it did not say what percentage of people studied stopped identifying as transgender.

“The 80% statistic, used by the Florida Department of Health and the state’s leadership, is categorically false,” Dr. Meredithe McNamara, an assistant professor of pediatrics at the Yale School of Medicine, told PolitiFact. “After a close read of the scholarship cited by the state, the state’s conclusion simply cannot be drawn in good faith.”

Steensma, who did not respond to PolitiFact’s requests for an interview, has responded to criticism from colleagues about how his research is used to discourage social and medical affirmation for gender diverse adolescents. 

“We want to stress that we do not consider the methodology used in our studies as optimal … or that the terminology used in our communications is always ideal,” Steensma wrote in 2018. “As shown, it may lead to confusion and wrong inferences.” 

McNamara also said that Florida’s reliance on a 2016 paper is a “glaring problem” because the state neglected to consider about six years of new research.

A study published in July, for instance, sought to develop an estimate of transgender children who later stop identifying with a gender that is incongruent with their assigned sex. It evaluated 300 transgender children over five years. To participate in the study, children must have already begun social transitioning, which often involves changing names, haircuts, and pronouns. 

Researchers from Princeton University’s TransYouth Project followed up with participants in person and online. At the end of the five years, 94% of participants still identified as transgender.

Anna Sutton was shocked when she received a letter from her husband’s job-based health plan stating that Humira, an expensive drug used to treat her daughter’s juvenile arthritis, was now on a long list of medications considered “nonessential benefits.”

The July 2021 letter said the family could either participate in a new effort overseen by a company called SaveOnSP and get the drug free of charge or be saddled with a monthly copayment that could top $1,000.

“It really gave us no choice,” said Sutton, of Woodinville, Washington. She added that “every single FDA-approved medication for juvenile arthritis” was on the list of nonessential benefits.

Sutton had unwittingly become part of a strategy that employers are using to deal with the high cost of drugs prescribed to treat conditions such as arthritis, psoriasis, cancer, and hemophilia.

Those employers are tapping into dollars provided through programs they have previously criticized: patient financial assistance initiatives set up by drugmakers, which some benefit managers have complained encourage patients to stay on expensive brand-name drugs when less expensive options might be available.

Now, though, employers, or the vendors and insurers they hire specifically to oversee such efforts, are seeking that money to offset their own costs. Drugmakers object, saying the money was intended primarily for patients. But some benefit brokers and companies like SaveOnSP say they can help trim employers’ spending on insurance — which, they say, could be the difference between an employer offering coverage to workers or not.

It’s the latest twist in a long-running dispute between the drug industry and insurers over which group is more to blame for rising costs to patients. And patients are, again, caught in the middle.

Patient advocates say the term “nonessential” stresses patients out even though it doesn’t mean the drugs — often called “specialty” drugs because of their high prices or the way they are made — are unnecessary.

Some advocates fear the new strategies could be “a way to weed out those with costly health care needs,” said Rachel Klein, deputy executive director of the AIDS Institute, a nonprofit advocacy group. Workers who rely on the drugs may feel pressured to change insurers or jobs, Klein said.

Two versions of the new strategy are in play. Both are used mainly by self-insured employers that hire vendors, like SaveOnSP, which then work with the employers’ pharmacy benefit managers, such as Express Scripts/Cigna, to implement the strategy. There are also smaller vendors, like SHARx and Payer Matrix, some of which work directly with employers.

In one approach, insurers or employers continue to cover the drugs but designate them as “nonessential,” which allows the health plans to bypass annual limits set by the Affordable Care Act on how much patients can pay in out-of-pocket costs for drugs. The employer or hired vendor then raises the copay required of the worker, often sharply, but offers to substantially cut or eliminate that copay if the patient participates in the new effort. Workers who agree enroll in drugmaker financial assistance programs meant to cover the drug copays, and the vendor monitoring the effort aims to capture the maximum amount the drugmaker provides annually, according to a lawsuit filed in May by drugmaker Johnson & Johnson against SaveOnSP, which is based in Elma, New York.

The employer must still cover part of the cost of the drug, but the amount is reduced by the amount of copay assistance that is accessed. That assistance can vary widely and be as much as $20,000 a year for some drugs.

In the other approach, employers don’t bother naming drugs nonessential; they simply drop coverage for specific drugs or classes of drugs. Then, the outside vendor helps patients provide the financial and other information needed to apply for free medication from drugmakers through charity programs intended for uninsured patients.

“We’re seeing it in every state at this point,” said Becky Burns, chief operating officer and chief financial officer at the Bleeding and Clotting Disorders Institute in Peoria, Illinois, a federally funded hemophilia treatment center.

The strategies are mostly being used in self-insured employer health plans, which are governed by federal laws that give broad flexibility to employers in designing health benefits.

Still, some patient advocates say these programs can lead to delays for patients in accessing medications while applications are processed — and sometimes unexpected bills for consumers.

“We have patients get billed after they max out their assistance,” said Kollet Koulianos, vice president of payer relations at the National Hemophilia Foundation. Once she gets involved, vendors often claim the bills were sent in error, she said.

Even though only about 2% of the workforce needs the drugs, which can cost thousands of dollars a dose, they can lead to a hefty financial liability for self-insured employers, said Drew Mann, a benefits consultant in Knoxville, Tennessee, whose clientele includes employers that use variations of these programs.

Before employer health plans took advantage of such assistance, patients often signed up for these programs on their own, receiving coupons that covered their share of the drug’s cost. In that circumstance, drugmakers often paid less than they do under the new employer schemes because a patient’s out-of-pocket costs were capped at lower amounts.

Brokers and the CEOs of firms offering the new programs say that in most cases patients continue to get their drugs, often with little or no out-of-pocket costs.

If workers do not qualify for charity because their income is too high, or for another reason, the employer might make an exception and pay the claim or look for an alternative solution, Mann said. Patient groups noted that some specialty drugs may not have any alternatives.

How this practice will play out in the long run remains uncertain. Drugmakers offer both copay assistance and charity care in part because they know many patients, even those with insurance, cannot afford their products. The programs are also good public relations and a tax write-off. But the new emphasis by some employers on maximizing the amount they or their insurers can collect from the programs could cause some drugmakers to take issue with the new strategies or even reconsider their programs.

“Even though our client, like most manufacturers, provides billions in discounts and rebates to health insurers as part of their negotiations, the insurers also want this additional pool of funds, which is meant to help people who can’t meet the copay,” said Harry Sandick, a lawyer representing J&J.

J&J’s lawsuit, filed in U.S. District Court in New Jersey, alleges that patients are “coerced” into participating in copay assistance programs after their drugs are deemed “nonessential” and therefore are “no longer subject to the ACA’s annual out-of-pocket maximum.”

Once patients enroll, the money from the drugmaker goes to the insurer or employer plan, with SaveOnSP retaining 25%, according to the lawsuit. It claims J&J has lost $100 million to these efforts.

None of that money counts toward patients’ deductibles or out-of-pocket maximums for the year.

In addition to the lawsuit over the copay assistance program efforts, there has been other reaction to the new employer strategies. In an October letter to physicians, the Johnson & Johnson Patient Assistance Foundation, a separate entity, said it will no longer offer free medications to patients with insurance starting in January, citing the rise of such “alternative funding programs.”

Still, J&J spokesperson L.D. Platt said the drugmaker has plans, also in January, to roll out other assistance to patients who may be “underinsured” so they won’t be affected by the foundation’s decision.

In a statement, SaveOnSP said that employers object to drug companies’ “using their employees’ ongoing need for these drugs as an excuse to keep hiking the drugs’ prices” and that the firm simply “advises these employers on how to fight back against rising prices while getting employees the drugs they need at no cost to the employees.”

In a court filing, SaveOnSP said drugmakers have another option if they don’t like efforts by insurers and employers to max out what they can get from the programs: reduce the amount of assistance available. J&J, the filing said, did just that when it recently cut its allotted amount of copay assistance for psoriasis drugs Stelara and Tremfya from $20,000 to $6,000 per participant annually. The filing noted that SaveOnSP participants would still have no copay for those drugs.

For Sutton’s part, her family did participate in the program offered through her husband’s work-based insurance plan, agreeing to have SaveOnSP monitor their enrollment and payments from the drugmaker.

So far, her 15-year-old daughter has continued to get Humira, and she has not been billed a copay.

Even so, “the whole process seems kind of slimy to me,” she said. “The patients are caught in the middle between the drug industry and the insurance industry, each trying to get as much money as possible out of the other.”

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ATLANTA — Earlier this year, top leadership at the Centers for Disease Control and Prevention began a monumental task: turning the sprawling, labyrinthine organization known for its highly specialized, academically focused scientific research into a sleek, flexible public health response agency primed to serve the American public. It’s an attempt to keep the CDC from repeating the mistakes it made while responding to covid-19.

But agency veterans, outside public health officials, and workplace organization experts said the current workplace structure could be a major barrier to that goal. Like directors before her, agency head Dr. Rochelle Walensky spends a considerable amount of time away from the CDC’s headquarters in Atlanta. The agency has also embraced a workplace flexibility program that has allowed most of its scientists to stay remote.

As of October, 10,020 of the CDC’s 12,892 full-time employees — 78% of the full-time workforce — were allowed to work remotely all or part of the time, according to data that KHN obtained via a Freedom of Information Act request.

Experts said the lack of face-to-face work will likely be a substantial obstacle to the top leadership’s effort to overhaul the agency after its failures during the pandemic — a botched testing rollout, confusing safety guidance, the slow release of scientific research, and a loss of public trust.

They also wondered whether Walensky, who frequently works remotely while traveling, can bring about that change from afar and whether a virtual workforce might experience more challenges battling infectious diseases than one working together in person.

“One of the things that a really strong new leader would do is they’d be visible, they’d be walking the halls, they’d have the open door,” said Pamela Hinds, a professor of management science and engineering at Stanford University. “That’s much harder to accomplish when nobody’s there.”

Key to the effort to reform the CDC is changing its institutional culture, which the agency says is at the core of all its work — from how it interacts with other agencies to how it shares its research. Walensky has said the CDC needs to be faster and nimbler in the face of emergencies and more communicative, both internally and with the public.

A flexible, responsive, and collaborative culture thrived not too long ago — during the Obama administration, when the agency handled crises such as the H1N1 flu pandemic and the Zika virus outbreak, said Dr. Stephen Cochi, who worked at the CDC for four decades before retiring this year. “I would like to see every effort made to try to restore that culture to the extent possible, because CDC will potentially lose some of its excellence if it can’t,” he said.

Changes, such as the transition to a largely remote workforce and a ballooning bureaucracy, he said, made it “almost impossible to get anything done” in his later years at the agency.

Chris Collins, a professor at Cornell University’s School of Industrial and Labor Relations, said that institutional culture includes “the unwritten rules of how work gets done” and that those are hard to learn in a remote work environment.

A largely remote workplace, Collins said, can lead to weaker social connections among staffers, which can ultimately result in less understanding of and investment in the institution’s values. A loss of personal interaction can also suppress innovation. “If you believe great new ideas come from people bumping ideas up against each other, you want to try and create an environment where that happens as often as possible,” he said.

A document that outlines the CDC’s policy and that was last updated in April says remote work can help recruit and retain staffers, keep workers happy, and reduce the cost of leased office space. It followed updated guidance from the U.S. Office of Personnel Management encouraging agencies across the federal government to consider remote work options for staff, considering their utility during the covid-19 pandemic.

As of early 2020, much of the workforce of the FDA and the National Institutes of Health was working remotely. Today, the NIH is mostly back in the office, but the FDA said many of its employees continue to work remotely when possible. And while the White House COVID-19 Task Force huddled in the early days of the pandemic and held in-person news conferences, its briefings became largely remote events.

Still, Walensky has recently faced pointed skepticism about the workforce flexibility policy from lawmakers, who questioned her ability to remake the CDC with a dispersed staff.

During a congressional hearing in September, U.S. Sen. Bill Cassidy (R-La.) quoted remarks that a former acting CDC director had made to The New York Times: “‘I don’t know how you motivate and inspire culture change when people aren’t together.’”

“People at the CDC are working well, they’re working hard, and they don’t necessarily need to be on-site in Atlanta,” Walensky responded. “In fact, oftentimes, they’re more productive off-site.”

Walensky added that agency staff deployments are common and that many lab staffers, who can’t work from home, are reporting to CDC offices.

Leading the agency also isn’t a traditional office job.

“The role of CDC director has historically involved a significant amount of official travel around the globe; requiring the director to be mobile and able to work from anywhere,” Jason McDonald, a CDC spokesperson, said in a statement. “Dr. Walensky splits her time between CDC domestic sites around the country, Washington, D.C., state health departments, and internationally where CDC has a presence in 60 countries.”

KHN spoke with multiple CDC employees working remotely. They declined to speak on the record because of concerns about job security.

They said the remote work policy had no impact on their work but acknowledged that reduced opportunities for in-person interaction could make some CDC staff members feel less connected to their managers and peers — and to the agency’s mission.

That lack of personal connection can lead to a lack of trust, which can keep important conversations from happening, said Hinds, the Stanford professor. “We’re much more willing to be open, ask difficult questions, bring up problems when we have actually sat down with somebody face-to-face and gotten to know them a little bit better,” she said.

A remote work environment also makes it harder for an incoming leader who has no experience inside an organization to truly understand its quirks, Hinds said. Walensky was an external hire and worked at Massachusetts General Hospital before her appointment as CDC director. And booking time for a video or phone call with a new boss to help them learn about an institution is “a big hurdle,” Hinds said, compared with bumping into them in the hallway or at the coffee cart.

In her early days working at the CDC, Dr. Anne Schuchat said, she relished informal interactions with co-workers and called such unscheduled time creative and productive. “I think you lose some things when you don’t have the informal mentoring and the visibility, perhaps the greater sensitivity to who’s struggling, who needs help,” Schuchat said.

She spent more than three decades at the agency, including two stints as acting director, before retiring in summer 2021. Her departure came on the heels of that of another high-level CDC official, Dr. Nancy Messonnier.

Schuchat said that working remotely part time was encouraged at the CDC before the pandemic because of a lack of office space. She said she imagined that many staffers were indeed more productive while working remotely, despite the possible costs to the agency’s culture.

Many people have fled the U.S. public health workforce in recent years, burned out from the covid-19 response. Public health experts said that keeping talent requires offering benefits such as remote work — especially when it’s hard to offer competitive salaries — and getting staffers to believe in an agency’s mission.

But, the experts said, in-person interactions can lead to strong allegiances and investment in an organization, which can translate to better retention.

“They generally want to feel like their work is important and that they’re valued,” said Dr. Manisha Juthani, who has led the Connecticut Department of Public Health since July 2021. “And the workplace allows for that a little bit more so than just sitting in front of the computer.”

Walensky has said that transforming the CDC’s culture from one that’s methodical and academic to one that’s focused on quick action won’t be easy. Other experts agree on the need for the pivot.

“They tend to be an agency that studies things and then, in their own sweet time, responds, versus being an emergency response agency,” said Dr. Georges Benjamin, executive director of the American Public Health Association.

Overhauling that culture will be a big challenge, with high stakes, for the agency tasked with protecting the public health of all Americans. Benjamin said the CDC would likely have made its pandemic stumbles even if staffers hadn’t been working remotely. But coming to terms with those mistakes — and rebuilding the agency to keep them from happening in the future — could be easier and more sustainable if more people were working together in person, he said.

“How do you become part of a culture, how do you become part of a holistic organization, if you’re not together?” he said. “While I’m not disturbed that they’re not back, my advice is to get there as quickly as they can.”

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Assisted living communities too often fail to meet the needs of older adults and should focus more on residents’ medical and mental health concerns, according to a recent report by a diverse panel of experts.

It’s a clarion call for change inspired by the altered profile of the population that assisted living now serves.

Residents are older, sicker, and more compromised by impairments than in the past: 55% are 85 and older, 77% require help with bathing, 69% with walking, and 49% with toileting, according to data from the National Center for Health Statistics.

Also, more than half of residents have high blood pressure, and a third or more have heart disease or arthritis. Nearly one-third have been diagnosed with depression and at least 11% have a serious mental illness. As many as 42% have dementia or moderate-to-severe cognitive impairment.

“The nature of the clientele in assisted living has changed dramatically,” yet there are no widely accepted standards for addressing their physical and mental health needs, said Sheryl Zimmerman, who led the panel. She’s co-director of the Program on Aging, Disability, and Long-Term Care at the University of North Carolina-Chapel Hill.

The report addresses this gap with 43 recommendations from experts including patient advocates, assisted living providers, and specialists in medical, psychiatric, and dementia care that Zimmerman said she hopes will become “a new standard of care.”

One set of recommendations addresses staffing. The panel proposes that ratios of health aides to residents be established and that either a registered nurse or a licensed practical nurse be available on-site. (Before establishing specific requirements for various types of communities, the panel suggested further research on staffing requirements was necessary.)

Like nursing homes and home health agencies, assisted living operators have found it hard to retain or hire staff during the covid-19 pandemic. In a September 2021 survey, 82% reported “moderate” or “high” level of staffing shortages.

Dr. Kenneth Covinsky, a geriatrician and professor of medicine at the University of California-San Francisco, witnessed staffing-related problems when his mother moved to assisted living at age 79. At one point, she fell and had to wait about 25 minutes for someone to help her get up. On another occasion, she waited for 30 minutes on the toilet as overworked staffers responded to pagers buzzing nonstop.

“The nighttime scene was crazy: There would be one person for 30 to 40 residents,” said Covinsky, the author of an editorial accompanying the consensus recommendations. Eventually, he ended up moving his mother to another facility.

The panel also recommended staffers get training on managing dementia and mental illness, on medication side effects, on end-of-life care, on tailoring care to individual residents’ needs, and on infection control — a weakness highlighted during the height of the pandemic, when an estimated 17% more people died in assisted living in 2020 compared with previous years.

“If I were placing my parent in assisted living, I certainly would be looking not just at staffing ratios but the actual training of staff,” said Robyn Stone, senior vice president of research at LeadingAge and co-director of its long-term services and supports center at the University of Massachusetts-Boston. LeadingAge is an industry organization representing nonprofit long-term care providers. Stone said the organization generally supports the panel’s work.

The better trained staff are, the more likely they are to provide high-quality care to residents and the less likely they are to feel frustrated and burned out, said Dr. Helen Kales, chair of the Department of Psychiatry and Behavioral Sciences at UC Davis Health.

This is especially important for memory care delivered in stand-alone assisted living facilities or a wing of a larger community. “We have seen places where a memory care unit charges upwards of $10,000 a month for ‘dementia care’ yet is little more than a locked door to prevent residents from leaving the unit and not the sensitive and personalized care advertised,” wrote Covinsky and his University of California-San Francisco colleague Dr. Kenneth Lam in their editorial.

Because dementia is such a pervasive concern in assisted living, the panel recommended that residents get formal cognitive assessments and that policies be established to address aggression or other worrisome behaviors.

One such policy might be trying non-pharmaceutical strategies (examples include aromatherapy or music therapy) to calm people with dementia before resorting to prescribed medications, Kales said. Another might be calling for a medical or psychiatric evaluation if a resident’s behavior changes dramatically and suddenly.

Further recommendations from the panel emphasize the importance of regularly assessing residents’ needs, developing care plans, and including residents in this process. “The resident should really be directing what their goals are and how they want care provided, but this doesn’t always happen,” said Lori Smetanka, a panel member and executive director of the National Consumer Voice for Quality Long-Term Care, an advocacy organization.

“We agree with many of these recommendations” and many assisted living communities are already following these practices, said LaShuan Bethea, executive director of the National Center for Assisted Living, an industry organization.

Nonetheless, she said her organization has concerns, especially about the practicality and cost of the recommendations. “We need to understand what the feasibility would be,” she said, and suggested that a broad study look at those issues. In the meantime, states should examine how they regulate assisted living, taking into account the increased needs of the residents, Bethea said.

Because the nation’s roughly 28,900 assisted living communities are regulated by states and there are no federal standards, practices vary widely and generally there are fewer protections for residents than are found in nursing homes. Some assisted living facilities are small homes housing as few as four to six seniors; some are large housing complexes with nearly 600 older adults. Nearly 919,000 individuals live in these communities.

“There are many different flavors of assisted living, and I think we need to be more purposeful about naming what they are and who they’re best suited to care for,” said Kali Thomas, a panel member and an associate professor of health services, policy, and practice at Brown University.

Originally, assisted living was meant to be a “social” model: a home-like setting where older adults could interact with other residents while receiving help from staff with daily tasks such as bathing and dressing. But given the realities of today’s assisted living population, “the social model of care is outmoded,” said Tony Chicotel, a panel member and staff attorney with California Advocates for Nursing Home Reform.

Still, he and other panelists don’t want assisted living to become a “medical” model, like nursing homes.

“What’s interesting is you see nursing homes pushing to get to a more homelike environment and assisted living needing to more adequately manage the medical needs of residents,” Chicotel told me, referring to the current pandemic-inspired reexamination of long-term care. “That said, I don’t want assisted living facilities to look more like nursing homes. How this all will play out isn’t at all clear yet.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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December 2, 2022

</p> <p>KHN senior correspondent Angela Hart joined the nonpartisan group <a rel="nofollow" href="http://apicdn.viglink.com/api/click?format=go&key=4d04fba092064d960b668f8307a77d1b&loc=https%3A%2F%2Ftrading-u.com%2Fcategory%2Fnews%2Ffeed%2F&out=https%3A%2F%2Fwww.facebook.com%2FDemocracyWinters">Democracy Winters</a> on Nov. 19 to discuss the politics of health care in California. She focused on Gov. Gavin Newsom’s major health care initiatives, including a <a rel="nofollow" href="http://apicdn.viglink.com/api/click?format=go&key=4d04fba092064d960b668f8307a77d1b&loc=https%3A%2F%2Ftrading-u.com%2Fcategory%2Fnews%2Ffeed%2F&out=https%3A%2F%2Fcaliforniahealthline.org%2Fnews%2Farticle%2Fcalifornia-medicaid-makeover-calaim-homeless-whole-body-care%2F">transformation of the state Medicaid program</a> that will bring nontraditional, social services to some enrollees — with a focus on homeless patients.</p> <p>She also discussed Newsom’s plan for California to <a rel="nofollow" href="http://apicdn.viglink.com/api/click?format=go&key=4d04fba092064d960b668f8307a77d1b&loc=https%3A%2F%2Ftrading-u.com%2Fcategory%2Fnews%2Ffeed%2F&out=https%3A%2F%2Fcaliforniahealthline.org%2Fnews%2Farticle%2Fcalifornia-wants-to-slash-insulin-prices-by-becoming-a-drugmaker-can-it-succeed%2F">produce generic insulin</a> under the CalRx label and sell it at a lower cost than is currently available. And she described Newsom’s on-again, off-again relationship with the politically volatile issue of <a rel="nofollow" href="http://apicdn.viglink.com/api/click?format=go&key=4d04fba092064d960b668f8307a77d1b&loc=https%3A%2F%2Ftrading-u.com%2Fcategory%2Fnews%2Ffeed%2F&out=https%3A%2F%2Fcaliforniahealthline.org%2Fnews%2Farticle%2Fhealth-care-unions-defending-newsom-from-recall-will-want-single-payer-payback%2F">single-payer health care</a>.  </p> <p>Read Hart’s coverage of those issues <a rel="nofollow" href="http://apicdn.viglink.com/api/click?format=go&key=4d04fba092064d960b668f8307a77d1b&loc=https%3A%2F%2Ftrading-u.com%2Fcategory%2Fnews%2Ffeed%2F&out=https%3A%2F%2Fkhn.org%2Fnews%2Fauthor%2Fangela-hart%2F">here</a>.</p> <p><a rel="nofollow" href="http://apicdn.viglink.com/api/click?format=go&key=4d04fba092064d960b668f8307a77d1b&loc=https%3A%2F%2Ftrading-u.com%2Fcategory%2Fnews%2Ffeed%2F&out=https%3A%2F%2Fkhn.org%2Fabout-us">KHN</a> (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at <a rel="nofollow" href="http://apicdn.viglink.com/api/click?format=go&key=4d04fba092064d960b668f8307a77d1b&loc=https%3A%2F%2Ftrading-u.com%2Fcategory%2Fnews%2Ffeed%2F&out=https%3A%2F%2Fwww.kff.org%2Fabout-us%2F">KFF</a> (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.</p> <h3>USE OUR CONTENT</h3> <p>This story can be republished for free (<a rel="nofollow" href="http://apicdn.viglink.com/api/click?format=go&key=4d04fba092064d960b668f8307a77d1b&loc=https%3A%2F%2Ftrading-u.com%2Fcategory%2Fnews%2Ffeed%2F&out=https%3A%2F%2Fkhn.org%2Fnews%2Farticle%2Fdisability-tax-medical-bills-inaccessible-blind-americans%2Fview%2Frepublish%2F">details</a>).</p> <p>Copy HTML