Category: From California Healthline.org

Sen. Lindsey Graham has never been a fan of the Affordable Care Act — even though it’s helped dramatically lower the number of uninsured people in his home state of South Carolina.

The Republican, who heads the Senate Judiciary Committee, attacked the law at the confirmation hearings for Supreme Court nominee Amy Coney Barrett. Democrats have made the nomination a referendum on the health law, which will be the subject of a Supreme Court hearing on Nov. 10. They fear the court may overturn the entire law, which has led to huge expansions in coverage and blocked insurers from discriminating against people with preexisting conditions, among other consumer protections.

Graham suggested that South Carolina was getting the short end of funding because the health law is sending a disproportionate amount of its money to states represented by Democrats in Congress.

“Under the Affordable Care Act, three states get 35% of the money, folks. Can you name them? I’ll help you: California, New York and Massachusetts. They’re 22% of the population. Sen. [Dianne] Feinstein’s from California, [House Speaker] Nancy Pelosi’s from California, Chuck Schumer, the leader of the Democratic Senate, is from New York, and Massachusetts is [Sen.] Elizabeth Warren. Now, why do they get 35% of the money when they’re only 22% of the population? That’s the way they designed the law: The more you spend, the more you get.”

His statement got us wondering if those numbers are true.

Complicated Math

We asked Graham’s office for evidence to support his statement. His spokesperson responded with data he said was from the Centers for Medicare & Medicaid Services as well as the Medicaid and CHIP Payment and Access Commission, a congressional advisory board.

To look at total spending under the ACA, Graham’s office analyzed federal money that went to pay for the Medicaid expansion, tax credits given to consumers to subsidize premiums of insurance plans on the marketplace, cost sharing reduction subsidies (which were given to insurers to defray some of the costs they were required by the ACA to pick up for marketplace customers with very low incomes) and the Basic Health Program, which is an option in the ACA that lets states offer low-income residents different coverage than plans offered on the marketplaces.

Graham’s office did not share the actual reports used for the analysis, but staffers said they used 2016 data, even though more recent data was available. The numbers were based on calculations made in 2017 when Republican lawmakers sought to repeal and replace the ACA. Their analysis showed $118 billion in total 2016 federal spending on the ACA, with California, New York and Massachusetts receiving about $43 billion, or about 37% (slightly higher than what Graham cited at the hearing).

Nearly two-thirds of the funding was attributed to the expansion of Medicaid to all adults below the federal poverty level. The Supreme Court ruled that pursuing the expansion was an option left to states’ discretion — South Carolina opted against it. The federal government paid all those Medicaid costs from 2014 through 2016 for new enrollees and then gradually reduced its share to 90% today.

We decided to independently look at the spending using the latest available numbers. We reviewed federal data compiled by KFF as well as data provided directly from the U.S. Centers for Medicare & Medicaid Services and the states, when necessary. (KHN is an editorially independent program of KFF.)

It is important to note that the Trump administration ended the cost sharing reduction payments in October 2017. So, KHN’s analysis did not include spending for that program.

We analyzed the latest Medicaid expansion funding from 2018 and the latest Obamacare tax credit spending and also Basic Health Program spending from 2019. Only two states participate in that program, New York and Minnesota.

Adding up the latest data and the federal share of funding came to nearly $140 billion. Of that amount, New York, California and Massachusetts — which represent about 20% of the nation’s population — received a combined $40 billion, or about 29%.

The largest category of federal funding by far was the nearly $27.5 billion the three states together received from Medicaid expansion.

New York received about $5 billion in fiscal 2019 for the Basic Health Program.

Sifting through older datasets, one key discrepancy stands out in the figures used by Graham. He lists Massachusetts as receiving $6.1 billion in federal exchange subsidies — almost 20% of the national total — while federal data used by KFF in 2016 cites $360 million.

Graham insinuated that South Carolina wasn’t getting its fair share of money, calling the law “a disaster for the state.”

But the refusal by the state’s Republican leaders for the past seven years to expand Medicaid — which would have brought in billions of federal dollars — is the main reason for the funding disparity. South Carolina is one of 12 states that have not adopted Medicaid expansion.

That decision has left hundreds of thousands of the state’s residents uninsured because they have incomes too high for Medicaid but too low to qualify for federal subsidies to help them buy insurance plans sold on the ACA marketplaces. To qualify for a subsidy, consumers’ income must be at least at the federal poverty level, or $12,760 in 2020.

“A big driver of the flow of federal funds is related to that decision about whether to expand,” said Larry Levitt, KFF’s executive vice president for health policy. “It is not inherently in the design of the law.”

If South Carolina expanded Medicaid, about 330,000 more residents would be covered and the federal government would give an additional $1.6 billion in annual Medicaid funding to the state, according to an analysis by the Urban Institute. State Medicaid spending would rise by $250 million.

Even without expanding Medicaid, the uninsured rate in South Carolina has dropped from 20% in 2008 to about 13% in 2019, according to Census data.

More than 9 in 10 people in the state who get coverage through the ACA marketplace get tax credits to help them pay their monthly premiums.

In fact, South Carolina gets a larger share of those premium tax credits than most states. South Carolina, the nation’s 23rd-largest state by population size, ranks 11th in the number of residents getting those subsidies and ninth in receipt of the federal ACA premium subsidies, according to the federal data.

Disadvantage for ‘Fiscally Responsible States’

Kevin Bishop, a spokesperson for Graham, said the point of the senator’s remarks is that the ACA “is structured so that states that either expanded [Medicaid] or have favorable state eligibility will have a disproportionate share of funds. This gives an advantage to high-spending states.” States that are more “fiscally responsible” are at a disadvantage, he said.

Bishop acknowledged that ACA spending does change each year.

Levitt noted that Graham’s critique omitted an important perspective about other states. The senator did not mention that enrollees in two Republican-controlled states with large populations, Florida and Texas, receive more in ACA premium subsidies than people in New York or Massachusetts. However, neither of those Southern states has expanded its Medicaid program.

Still, experts noted that Graham’s comment that the more states spend the more they get from the ACA is partly true.

It accurately reflects the ACA’s Medicaid formula. As states expand Medicaid eligibility, they pick up more expenses and also receive more money in a federal match.

Joe Antos, a health economist with the conservative American Enterprise Institute, said Graham is correct that the Medicaid expansion was designed to help direct additional funding to wealthier states such as New York, California and Massachusetts. Those states, as well as some others, had broader Medicaid eligibility rules than poorer states before the law was enacted, so their Medicaid rolls were relatively larger already.

That’s why the Medicaid expansion was set at 138% of the federal poverty level, rather than 100%, he said. The higher amount meant those states could get a larger reimbursement for people already in their program.

But he said states that chose not to expand Medicaid under the law can’t blame the law for getting fewer federal dollars.

“If a state did not expand, it’s on them for having less federal funding,” Antos said.

Ed Haislmaier, a senior research fellow at the conservative Heritage Foundation, said the expansion of Medicaid for those more progressive states significantly increased their funding. “New York made out like a bandit,” he said, noting the state had one of the nation’s largest Medicaid populations before 2010.

Our Ruling

Graham points to higher federal spending on ACA programs in three states that are represented by top congressional Democrats and complains that South Carolina is not faring as well. While his numbers are four years old, the latest numbers are just a few percentage points lower than what he cited — 29% compared with 35%.

He also left out some critical information — most important, that South Carolina didn’t pursue federal funding through Medicaid expansion.

His argument that the law was designed to help some states largely controlled by Democrats fails to note that many Republican-controlled states have received heavy federal funding, too, either because of ACA tax subsidies or Medicaid expansion, or both.

He also didn’t acknowledge that South Carolina does have a strong record of receiving federal subsidies for consumers buying insurance on the ACA marketplace.

We rate Graham’s statement as Half True.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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To make ends meet, Martha Tapia works 64 hours a week at two Orange County, California, nursing homes. She is one of thousands of certified nursing assistants who perform the intimate and physical work of bathing, dressing and feeding the nation’s fragile elderly.

“We do everything for them. Everything you do for yourself, you have to do for the residents,” Tapia said.

And she’s one of many in that low-paid field, predominantly women of color, who work at more than one facility.

In March, when the coronavirus began racing through nursing homes, the federal government banned visitors. (That guidance has since been updated.) But even with the ban, infections kept spreading. A team of researchers from UCLA and Yale University decided to examine the people who continued to enter nursing homes during that time: the employees.

Keith Chen, a behavioral economist and UCLA professor, said the key question is this: “The people who, we can infer, work in this nursing home — what other nursing homes do they work at?”

Using location data from 30 million smartphones when the visitor ban was in place helped the scientists “see” the movements of people going into and out of nursing homes. The data showed a lot of nursing home workers are — like Tapia — working at more than one facility. Chen said the findings suggest that staffers who work in multiple nursing homes are one source of the spread of infections.

“When you learn that over 20 of your workers are also spending time in other nursing homes, that should be a real red flag,” Chen said.

The Toll on Patients and Beyond

More than 84,000 residents and staff members of nursing homes and other long-term care facilities have died of COVID-19 across the U.S., representing 40% of all coronavirus fatalities in the country, according to KFF’s most recent analysis. (KHN is an editorially independent program of KFF.)

In California, the analogous toll is more than 5,700 deaths, making up 35% of all coronavirus fatalities in the state.

The UCLA team created maps of movement and found that on average each nursing home is connected to seven others through staff movement. Limiting nursing home employees to one facility could mean fewer COVID-19 infections — but that would hurt the workforce of people who say they work multiple jobs because of low wages.

After each of her shifts, Tapia worries she’ll bring the coronavirus home to her granddaughter. She tries to take precautions, including buying N95 masks from nurses. She knows it’s not just patients who are at risk. Nursing home workers such as Tapia are also contracting COVID-19 — in California alone, 153 of them have died since the pandemic began.

At the nursing home where she works in the morning, Tapia gets an N95 mask that she must only use — and reuse — in that facility. At her other nursing home job, in the afternoons, she gets a blue surgical mask to wear.

“They say they cannot give us N95 [masks],” she said, because she works in the “general area” where residents haven’t tested positive for the coronavirus.

She doesn’t want to work at multiple nursing homes, but her rent in Orange County is $2,200 a month, and her low pay and limited hours at each nursing home make multiple jobs a necessity.

“I don’t want to get sick. But we need to work. We need to eat, we need to pay rent. That’s just how it is,” Tapia said.

Staff Connections Equal Infections

The UCLA study also found that some areas of the country have a much higher overlap in nursing home staffing than others.

“There are some facilities in Florida, in New Jersey, where they’re sharing upwards of 50 to 100 workers,” said UCLA associate professor Elisa Long, who, along with her colleagues, examined data during the federal visitor ban from March to May. “This is over an 11-week time period, but that’s a huge number of individuals that are moving between these facilities; all of these are potential sources of COVID transmission.”

They also found the more shared workers a nursing home has, the more COVID-19 infections among the residents.

“Not only does it matter how connected your nursing home is, but what really matters is how connected your connections are,” Long said.

The researchers say they’ve informally dubbed these highly connected nursing homes as each state’s “Kevin Bacon of nursing homes,” after the Six Degrees of Kevin Bacon parlor game.

“We found that if you’re going to see a nursing home outbreak anywhere, it’s likely to spread to the Kevin Bacon of nursing homes in each state,” Chen said.

The team hopes that local health departments could use similar cellphone data methods as an early warning system. Using the test results from the “Kevin Bacon of nursing homes” as an indicator would be the first step.

“As soon as you detect an outbreak in one nursing home, you can immediately prioritize those other nursing homes that you know are at increased risk,” Chen said.

Prioritize Masks and Hand-Washing

The California Association of Health Facilities represents most nursing homes in the Golden State. In response to the study, the group said its members can’t prevent workers such as Tapia from taking jobs elsewhere, and they can’t pay them more, because California doesn’t pay them enough through Medicaid reimbursements.

Mike Dark, an attorney with the California Advocates for Nursing Home Reform, doesn’t buy that argument. He said the state already tried paying nursing homes more in 2006 — and that made them more profitable but not more safe and efficient. He said he’s skeptical that extra funding to pay staff would reach those workers.

“We know from past experience that money tends to go into the pockets of the executives and administrators who run these places,” Dark said.

He agreed that health workers such as Tapia should be paid more but cautioned against one idea being floated in some policy circles: limiting workers to one nursing home.

“Then you can wind up depriving some of the crucial health caregivers that we have in these facilities of their livelihoods, which can’t be a good solution,” he said.

Instead, he said, regulators need to focus on the basics, especially in the 100 California nursing homes with ongoing outbreaks, since it’s been shown that infection control measures work.

“Right now there’s poor access to [personal protective equipment]. There’s still erratic compliance with things like hand-washing requirements,” he said. “If we spent more time addressing those key issues, there would be much less concern about spread between facilities.”

Jackie Fortiér is health reporter for KPCC and LAist.com. This story is part of a partnership that includes KPCC, NPR and KHN, an editorially independent program of KFF.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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In a tweet to his 78,000 followers Sunday, U.S. Rep. Harley Rouda, a Democrat from Orange County, California, described his Republican opponent Michelle Steel’s attendance at an indoor fundraiser without a mask as “sickening.”

Democratic U.S. Rep. Gil Cisneros also blasted his Republican opponent, Young Kim, on Twitter for attending the “superspreader fundraiser,” calling it a “slap in the face to frontline workers” and his constituents in southern Los Angeles County and northern Orange County.

After President Trump’s superspreader event in Orange County last week, @YoungKimCA decided to host her own. The superspreader fundraiser—a crowded, indoor event with no social distancing/no masks—goes against CDC guidelines. It’s a slap in the face to frontline workers & #CA39. pic.twitter.com/1z2wd5Ohj4

— Gil Cisneros (@GilCisnerosCA) October 26, 2020

Earlier in the month, another Democrat, U.S. Rep. TJ Cox of Bakersfield, told a television debate audience that his GOP challenger, David Valadao, “is in lockstep with Donald Trump” and that Valadao aims to undo federal health protections.

These charges by incumbent lawmakers — who represent vast areas of California, from its inland farmlands to its coastal mansions and urban working-class neighborhoods — reflect a disciplined and widely used strategy Democratic congressional hopefuls are deploying across California and the nation: By associating their Republican opponents with the out-of-control coronavirus pandemic and threats to the Affordable Care Act, they hope to convince voters the Democratic Party is the one that can better protect Americans’ health.

In doing so, they are linking their challengers to President Donald Trump, who is deeply unpopular in the Golden State, with just 32% of likely voters approving of the way he is handling his job, according to a recent Public Policy Institute of California survey.

“Democrats have been able to tie the national conversation around the coronavirus pandemic with health care and with the economy and social unrest,” said David McCuan, a political science professor at Sonoma State University. “That allows Democrats to turn or hold individual districts.”

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But the strategy isn’t a slam-dunk for Democrats, especially in the districts they flipped in 2018 — including seven in California. Despite the changing demographics in the once Republican strongholds of Orange County and the Central Valley, McCuan and other political analysts said Republican victories are possible if even a small number of residents who voted Democratic in 2018 swung back to the GOP.

Republicans have already taken back one of those seats. U.S. Rep. Mike Garcia (R-Santa Clarita) beat Christy Smith in a May special election — 55% to 45% — to fill the vacancy left after Katie Hill resigned from Congress amid allegations of inappropriate relationships with staff members. Voters in the district that includes Santa Clarita and Simi Valley will pick between the same two candidates in Tuesday’s election.

In these competitive districts, political analysts say the winner will come down to voter turnout and Trump’s approval ratings, which is now inextricably tied to his handling of the public health crisis. Nationwide, 26 congressional seats are ranked as toss-ups, according to the Cook Political Report, which tracks races.

“A lot of it’s about the president,” said Wesley Hussey, a political science professor at Sacramento State. “And part of the component of the presidential election is health care, and that does trickle down to congressional races.”

Calls to the state Republican Party and the National Republican Congressional Committee were not returned. And none of the Republican challengers to the Democrats interviewed for this story responded to repeated interview requests.

In California’s southern Central Valley congressional district currently held by Cox, political analysts predict another nail-biter. Cox ousted Valadao from Congress in the last election by just 862 votes, in part by tying the three-term incumbent to Trump and criticizing Valadao’s votes to overturn the Affordable Care Act.

Now, Cox has added Trump’s handling of the pandemic as a reason for voters to reject Valadao again.

“He is in lockstep with Donald Trump,” Cox charged in a televised debate Oct. 20. “And I don’t know how you can stand behind a guy that’s saying, ‘Hey, we did a fantastic job and 200,000 Americans have died so far.’”

In the recent poll by the Public Policy Institute of California, California voters rated COVID-19 as the state’s top concern.

The tweets that Cisneros and Rouda penned Sunday, which included photos of their opponents at a fundraiser without masks, capitalize on that concern. Rouda, for example, reminded voters that his opponent, as the head of the Orange County Board of Supervisors, publicly questioned the local public health officer’s springtime recommendation that residents wear masks.

“Michelle Steel is Orange County’s top official and she violated public health orders to attend an indoor, maskless fundraiser just to receive a check,” Rouda told California Healthline on Monday. “The example she is setting shows that she lacks the leadership needed for her current position and the position she’s running for.”

Steel spokesperson Lance Trover accused Rouda of politicizing the pandemic, saying Steel has helped secure personal protective equipment for front-line workers, and food assistance and testing for the county’s most vulnerable residents.

Steel has publicly criticized Democratic Gov. Gavin Newsom for opening California’s economy too slowly, and her campaign has shared photos of Rouda socializing on a beach and in a restaurant without a mask. (Rouda said the only other people in the beach photo were close family members, and that the restaurant photo was taken before the pandemic.)

“Harley Rouda is a hypocrite who has spent the entire summer seeking to politicize the work of Orange County in battling the coronavirus,” Trover said.

While wearing a mask may resonate in California’s swing districts, there remain solidly red areas of California where defying a government mandate can score a candidate political points. U.S. Rep. Tom McClintock, a Republican who represents a sprawling conservative district spanning multiple northern and central counties, has called masks useless, balked at wearing one at a congressional hearing and asserted that state lockdowns have led to increased deaths.

So in addition to focusing on McClintock’s COVID response, his opponent, Brynne Kennedy, a first-time candidate and small-business owner, is targeting another health issue: his opposition to the ACA.

In her travels throughout the mostly rural district, Kennedy is highlighting his votes — 66 by her count — to weaken or overturn the Affordable Care Act.

“This is radically out of step with where our district is,” said Kennedy, whom political analysts describe as a long-shot candidate. “Talking about that to people, that’s very concerning to them, and it’s absolutely on the ballot this year.”

Kennedy’s focus on protecting the federal health care law, particularly preserving access to insurance for people with preexisting medical conditions, mirrors the messaging of her fellow Democrats.

And it’s putting a lot of Republicans on the defense, especially with Trump on the campaign trail advocating for the repeal of the Affordable Care Act, said GOP political consultant Rob Stutzman.

“Republicans are making a point of telling voters that they will support protecting preexisting conditions,” Stutzman said. “It’s clearly a vulnerability.”

U.S. Rep. Josh Harder (D-Modesto) has been talking about preexisting conditions since he first campaigned for his seat two years ago, referencing his brother’s health issues as a young child. He believes health care is once again the single-biggest issue in his race.

But Harder has recrafted his pitch from 2018, when he talked about backing “Medicare for All,” a position now seen as a vulnerability in swing districts where Republicans have labeled their opponents as liberal or socialist.

Now, Harder and other Democrats are talking about shoring up the ACA and creating a “public option” that would allow every American to enroll in a government-sponsored plan.

Harder said he is asking voters to reelect him to ensure Congress has the votes to protect the federal health care law if the Supreme Court invalidates it.

“We need to make sure that people understand that the stakes couldn’t be higher,” he said. “The only way that we get a legislative solution that prioritizes people with asthma, cancer and other preexisting conditions is if we elect Democrats to the House, to the Senate and the presidency.”

President Donald Trump entered office seeking a massive overhaul of the Medicaid program, which had just experienced the biggest growth spurt in its 50-year history.

His administration supported repealing the Affordable Care Act’s Medicaid expansion, which has added millions of adults to the federal-state health program for lower-income Americans. He also wanted states to require certain enrollees to work. He sought to discontinue the open-ended federal funding that keeps pace with rising Medicaid enrollment and costs.

He has achieved none of these ambitious goals.

Although Congress and the courts blocked a Medicaid overhaul, the Trump administration has left its mark on the nation’s largest government-run health program as it has sought to make states more responsible for assessing its impact and improving the health of enrollees.

One notable achievement: The Trump administration pushed some states to be more aggressive in weeding out ineligible recipients — an initiative that led to a drop in enrollment of children in several states, including Missouri and Tennessee. About half of those enrolled in Medicaid are children.

A recent report from the Georgetown University Center for Children and Families found that the number of uninsured children rose by more than 700,000 to 4.4 million from 2017 through 2019. The increase of uncovered children stands out since uninsured rates typically drop during periods of economic growth, such as the one occurring from 2017 to 2019.

Advocates for the poor say the administration’s efforts contributed to an increase in the number of uninsured children, after years of decline. “The administration has not succeeded on any of its goals in any meaningful way,” said Joan Alker, executive director of the Georgetown center. “But they still have inflicted some damaging changes to the program.”

“The administration has not prioritized the health of children,” said Bruce Lesley, president of the child advocacy group First Focus on Children.

Alker attributes the rise in uninsured children to federal officials’ decision to slash outreach funding for the Obamacare insurance exchanges — through which families eligible for Medicaid are often identified — and the administration’s focus on the “public charge” rule. That provision allows the federal government to more easily deny permanent residency status, popularly known as green cards, or entry visas to applicants who use — or are deemed likely to use — publicly funded programs such as food stamps, housing assistance and Medicaid.

Medicaid officials said the increase is partly due to loss of health coverage by middle-income families who are not eligible for Medicaid. They say those families don’t qualify for government subsidies for the ACA’s marketplace plans and were forced to drop their plans because of high premiums.

But Alker said federal data suggests that families who have incomes over the 400% federal poverty level eligibility limit for subsidies (about $87,000 for a family of three) saw a slower rate of increase in the number of uninsured children as opposed to lower-income kids.

A spokesperson for the federal government’s Centers for Medicare & Medicaid Services said the agency was “committed to ensuring that eligible children are enrolled and retained in coverage” and it spent $48 million in grants for outreach and enrollment effort last year.

The Trump administration opposes the ACA’s expansion of Medicaid, which provided billions in federal dollars to cover nondisabled, low-income adults. Yet seven states adopted the expansion during the past three years, including Republican-controlled Utah, Idaho, Oklahoma, Nebraska and Missouri.

Despite the aim to shrink the program, about 75 million people were enrolled in Medicaid in June 2020 — roughly the same number as in January 2017, when Trump took office.

One reason is that Medicaid enrollment soared this year following the COVID-19 outbreak as unemployment spiked to historic highs and federal stimulus money forbid states to drop anyone unless they moved out of state.

But that is far from the administration’s goal of “ushering in a new day” for Medicaid, as CMS Administrator Seema Verma said when she laid out her bold vision in a 2017 speech.

Verma acknowledged she was stepping into a hornet’s nest of entrenched stakeholders and interest groups.

“I would like to invite everybody here today who have fought the political healthcare battles over the last decade to take a deep breath, exhale and agree to reset as a group,” she said.

They didn’t. The administration’s major Medicaid changes were met with opposition from hospitals, doctors and patient advocacy groups, who feared the efforts would lead to cuts in funding or add obstacles for enrollees seeking care.

Officials spent two years seeking to allow states to require enrollees to work or volunteer as a condition for enrollment. They approved proposals from 10 states, but only Arkansas implemented the new requirement before a federal judge ruled it illegal. Arkansas’ brief experience resulted in more than 18,000 adults losing coverage.

After losing in federal district and appeals courts, the Trump administration has appealed to the Supreme Court, which will decide later this year whether to take the case.

The push for work requirements and other changes have altered the culture of Medicaid so that officials are more intent on keeping people out of the program instead of welcoming more in, said Lesley, of First Focus.

Before the pandemic, he said, the administration allowed states to add hurdles for families to get enrolled and stay enrolled, such as requiring them to more frequently recertify their income eligibility.

Aaron Yelowitz, a professor of economics at the University of Kentucky, said one of the Trump administration’s biggest impacts on Medicaid was prodding states to be more active in making sure they were covering only people who met the states’ eligibility rules. He noted the ACA gave states incentives to enroll newly eligible adults over traditional groups such as children and the disabled because the federal government paid a higher share of the cost.

Seeking Flexibility for States

The administration — as well as Republicans in Congress — favored a fundamental change in how Medicaid is funded. But Congress failed to move the program to a “block grant” approach, which would have given states a set annual amount — rather than the current system that provides funding determined by how many people qualify for the program and health costs. The GOP proposal also would have allowed states more flexibility in running the operations.

Critics predicted a block grant would have cut billions in state funding and led to cuts in services and eligibility.

Once the legislative proposal was dead, the administration sought to enact the strategy via its authority to test changes in payment methods. Only one state applied — Oklahoma — and it dropped its application this year after voters passed a Medicaid expansion ballot initiative.

Verma promised to give states more flexibility in running their programs in other ways, while also holding them more accountable for care to Medicaid enrollees. CMS has approved dozens of Medicaid waivers since 2017, including allowing states to be more innovative in helping enrollees with substance abuse or addiction problems and serious mental illness. It granted more than 30 states waivers to enhance treatment options.

With Medicaid paying for more than half of all births in the United States, Verma also sought to improve oversight of prenatal and early childhood services.

While CMS has started a scorecard to track Medicaid outcomes, the data is missing for several states or outdated on several measures. For example, the low-birthweight measure is missing data from more than 20 states and no data is listed on children born with an addiction.

CMS officials said they are working to provide more updated information on its report card.

Changes implemented by the administration, officials added, have elicited more timely data from states, allowing them to spot problems quicker. For example, in September, CMS determined that many children were delayed from March through May in seeing a doctor and getting important vaccines as the pandemic took hold. CMS pushed states and health providers to remedy the problem but did not offer specific help.

Asked during a recent phone briefing with reporters about Medicaid’s legacy under her stewardship, Verma didn’t mention the expansion, work requirements or efforts to turn Medicaid into a block grant program for states.

“We have aimed to try to ensure the program is sustainable for generations to come and ensure better outcomes for those it serves,” she said.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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The weeks of fear and uncertainty that Pam and Paul Alexander suffered as their adult daughter struggled against COVID-19 etched itself into the very roots of their hair, leaving behind bald patches by the time she left the hospital in early May.

Tisha Holt had been transferred by ambulance from a smaller hospital outside Nashville, Tennessee, to Vanderbilt University Medical Center on April 14, when her breathing suddenly worsened and doctors suspected COVID-19. Within several days her diagnosis had been confirmed, her oxygen levels were dropping, and breathing had become so excruciating that it felt like her “lungs were wrapped in barbed wire,” as Tisha describes it.

Vanderbilt doctors put the 42-year-old on a mechanical ventilator, and the next few weeks passed in a blur for her parents, who waited helplessly for the next update about the eldest of their three children.

“That’s when it got really, really bad,” Pam said. “We were not allowed to see her, to go, to talk to her — not anything. I would call. And I might get somebody, and then again I might not.” Later that first week after Tisha arrived at Vanderbilt, Pam reached a nurse. “She said, ‘Ms. Alexander, in all probability your daughter will die today.’ Me and my husband both, we just cried and cried.”

It “was probably more than likely the worst day of my life when the nurse told us that,” Paul said. “She was our first baby, and the first person that I’ve held that was part of me.”

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The number of Americans hospitalized with the virus is increasing again, reaching 41,000 late last week, many with a circle of loved ones holding vigil in their minds, even if they can’t sit at the bedside. A decade ago, critical care clinicians coined the term post-intensive care syndrome, or PICS. It describes the muscle weakness, cognitive changes, anxiety and other physical and mental symptoms that some ICU patients cope with after leaving the hospital. Those complications are fallout from the medications, immobility and other possible components of being critically ill. Now they worry that some family members of critically ill COVID patients may develop a related syndrome, PICS-Family.

Studies show that about one-fourth of family members, and sometimes more, experience at least one symptom of PICS-Family, including anxiety, depression, post-traumatic stress disorder or “complicated grief” — grief that is persistent and disabling — when their loved one has been hospitalized, according to a 2012 review article published in the journal Critical Care Medicine. Dr. Daniela Lamas, a critical care physician at Boston’s Brigham and Women’s Hospital, believes relatives and friends of coronavirus patients may be particularly vulnerable.

Hospital rules designed to prevent the spread of the virus have robbed them of the opportunity to sit with their loved ones, watching clinicians provide medical care and gradually processing what’s happening between physician updates, Lamas said. In pre-pandemic times, a nurse “would explain what they had heard [from the doctor] and help them come to terms with unacceptable realities,” she said.

Life Becomes a Daze

The Alexanders could reach a doctor or nurse on most days. But not always, said Pam, acknowledging that “they had a lot to do.” Pam described trying to cope minute to minute, day to day, waiting for the next report from the hospital, wandering from room to room. “You just walk around sort of in a daze. You can’t think about anything else but that.”

Paul struggled with feelings of depression, often retreating to his workshop. “I wouldn’t do anything but sit there and cry, wouldn’t work on nothing, just sit there with my head in my hands.”

Meanwhile, they had become temporary parents to their grandsons, two teenagers who had homework and laundry and kept asking about their mom. Pam tried to shield them as much as possible. “There are a lot of things I just didn’t tell them until it got really bad,” she said.

Being physically cut off from their daughter was the hardest, Pam and Paul said. “I don’t care if I had to put on 40 layers of clothes,” Pam said. “Just to have gotten to go in and touch her and see her would have made a huge difference.”

Even though family members are typically barred from visiting during the pandemic, they can wrestle with guilt that they let a loved one down in his or her time of need, said Jim Jackson, a psychologist and assistant director at Vanderbilt’s ICU Recovery Center.

Without any visual sense of what’s going on, “people often move to worst-case scenarios; they move to catastrophic thinking,” he said. “And why wouldn’t they, because it’s already a hugely serious situation, right? It’s a five-alarm fire and they’re not able to be engaged.”

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Seeking Healing

Doctors and nurses can ease the strain on loved ones by updating a designated family member at least once a day, said Judy Davidson, a nurse scientist at the University of California-San Diego and an author of the 2012 Critical Care Medicine review article. Arrange video calls, she suggested, so the family can see their loved one and better picture the room, clinicians and broader hospital environment.

“If we don’t protect them and keep them strong while the person is in the ICU,” Davidson said, “they won’t be strong enough to do the caregiving that’s necessary once the person comes home.”

After a patient does return home, family members may shy away from discussing what they have been through, so as not to burden their still recovering loved one, Jackson said. The ICU survivor may remain silent for similar reasons, he said.

“What tends to happen is they both sort of passively agree not to talk about the elephant in the room, when that’s exactly the best thing to do,” Jackson said.

Tisha — who finally left the hospital May 3 — was stunned by her parents’ appearance the first time she saw them. “They both looked exhausted and I was shocked at the amount of hair that they’d lost,” she wrote in an email. Treatment and damaged lungs have made it difficult for her to talk by phone.

Since then, her parents’ bald spots have begun to fill in, but they haven’t released their worry. Tisha can breathe from only the top of her lungs and needs 24-hour oxygen, Pam said. She’s not strong enough to return to work as a nurse, a job she loved. She no longer has health insurance and can’t afford even the cheapest plan on the Affordable Care Act exchanges. To this day, Tisha doesn’t know where she contracted the virus.

Her parents spend virtually all waking hours at Tisha’s home, about a 10-minute drive from their house, and check on her a few times daily, sometimes more often if she’s feeling poorly, Pam said. “I think, ‘Am I going to come over here and she’s going to be dead from her heart not working?’ It scares me to death because she has bad days and good days.”

Tisha keeps her cellphone handy in case they text or call. “If they call and I don’t answer, it sends them into a panic and they are apt to drive over here to make sure everything is alright,” she wrote.

She’s been attending a virtual ICU survivors support group at Vanderbilt that Jackson helps lead. It’s open to relatives, but Pam was unsure she could handle hearing others’ painful stories as she’s still processing her own. “I don’t mind talking to you about it,” she said, “but sometimes talking about it just sort of gets you in a funk.”

Their church community has provided solace, calling when Tisha was in the hospital and leaving food on the porch. Pam and Paul credit a myriad of prayers from loved ones near and far with bringing their daughter home. “Even the doctors, they really didn’t know why she was still here either, to be honest with you,” Paul said.

He hasn’t stopped fretting about his eldest child. “I still can’t turn it off — it hasn’t turned off,” Paul said. “But every day is a blessing, though.”

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

On the ‘Subject’ of Vaccine Trial Participants

In the piece about the AstraZeneca vaccine trial subject who suffered severe spinal cord inflammation, that person was repeatedly referred to as a “patient” (“NIH ‘Very Concerned’ About Serious Side Effect in Coronavirus Vaccine Trial,” Sept. 14). Once someone is enrolled in a trial, everything that happens to them is because they are a “subject,” not a patient. A patient is someone getting health care; a subject is willingly participating to be exposed to something that has nothing to do with their health or wellness. Please use the right term so that the reader can be reminded that the person was participating in this trial. Nice piece.

— Robin Chalmers, Atlanta

Don’t worry about Trump rushing a #vaccine. Worry about pharma companies hiding data from the FDA and NIH.https://t.co/BoxSZILoyx

— Mike’s Hard Left Turn🏴 🏴‍☠️ (@ozofperception) September 17, 2020

— Michael Berger, Canton, Ohio

Just read the story by Arthur Allen and Liz Szabo on risk/benefit of vaccine trials where a serious illness occurs. It hit home. I took Proscar for seven years in a prostate cancer prevention trial. I was in the third cohort. At some point short of the planned 10 cohorts, the test was aborted: Benefits were so great that the placebo would be unethical. I was lucky. My little blue pill was the real thing. That earned me a spot in the selenium/vitamin E trial to see if that combo prevented prostate cancer. That trial was aborted when serious health effects were diagnosed and there was a causal link. Good. I didn’t get both but I don’t know whether I got selenium or vitamin E. No problems. I know I did not get the placebo.

Now I’m doing the Pfizer COVID-19 vaccine trial at Cincinnati Children’s Hospital/Gamble Institute. So far, two shots, no immediate problems. Ask me in two years.

It’s important to say: A trial can stop because benefits wildly outweigh risks or because harms become obvious. I’ve had every vaccine relevant to my life and work for 82 years. I’ve seen smallpox and measles in southern Africa and polio in my hometown, Minneapolis. I got a typhus jab before going out to Africa from London almost 60 years ago. I’m a believer. Thanks for your clear-headed and well-written and -edited reporting. We need it more than ever.

— Ben Kaufman, Cincinnati

Regardless of widespread distrust caused by @realDonaldTrump ‘too many cooks’ syndrome on vaccine vetting has scientists saying such plans by individual states could backfire, confusing public & eroding confidence in any eventual #coronavirus vaccine. https://t.co/gCufRJ2FjJ

— Lindsay Resnick (@ResnickLR) October 7, 2020

— Lindsay Resnick, Chicago

Racial sensitivity training is essential. The healthcare system is not made to support people of color. Providers should not be another obstacle to receiving equitable healthcare #MedTwitter

Unconscious Bias Crops Up In Health Care, Even During A Pandemic https://t.co/tDwkCOO6qH

— Taylor Ross (@taycraye) October 21, 2020

— Taylor Ross, Columbia, Missouri

A Universal Problem

I want to let Karla Monterroso from the April Dembosky piece on unconscious bias in health care (“‘All You Want Is to Be Believed’: The Impacts of Unconscious Bias in Health Care,” Oct. 19) know that I have no doubt her experience was horrific, and I do not want to, in any way, disagree or diminish that it is related to unconscious bias. However, I am a skinny, white woman (and a nurse and nurse practitioner, by the way, and therefore better able to advocate for myself), and my interface with emergency, primary care and a few specialty practices in the “health care” system during the time of COVID-19 has also been most unfortunately and horrifically similar.

I, too, am utilizing my resources to speak up and speak out, knowing that for everyone who speaks up there are hundreds if not thousands who don’t. So please convey my gratitude to her, and to KHN for publishing her story. I hope that it and Kaiser Permanente’s research shed some light, not only on unconscious bias, but also the realities of today’s medical-industrial complex.

— Christine Fasching Maphis, Harrisonburg, Virginia

The Need for Trust Between Physician and Patient

Throughout history, there has been an extreme level of mistrust between health care providers and African American communities. So in 2020, when being asked to enter a trial for a coronavirus vaccine, the answer is easily no, without hesitation (“COVID Vaccine Trials Move at Warp Speed, But Recruiting Black Volunteers Takes Time,” Sept. 16).

Misconduct and mistreatment of patients presently and in the past, such as Henrietta Lacks and the many lives lost during the Tuskegee Syphilis Study, have forever been etched in the minds of many individuals, and trust is not easily given. When strengthening the relationship between patient and provider, trust must first be built before Black communities would even consider being test subjects.

What Dr. Vladimir Berthaud has been able to provide Robert Smith and the rest of his patients with is comfort, which is developed when the care is patient-centered. Effectively communicating with patients to ensure they understand what’s going on and what’s at stake, listening to their concerns, and respecting their preferences when it comes to receiving care can affect the decision patients decide to make in this very difficult time.

With over 8 million cases of COVID-19 in the United States, Black people make up 17.6% of reported cases from states who provided data on race/ethnicity, according to the CDC. With little to no volunteers willing to enter the trial, the likelihood of finding a vaccine to build the immune systems of all citizens is becoming further from achievable and even more difficult. Representation for people of color is needed, and providers need to take the extra step to encourage the Black community to participate in the trial that affects them, just as much as any other race.

— Tre’Jenae Mack, Baltimore

(Today is day 1 for me. An hour until vaccine or placebo) As COVID-19 Vaccine Trials Move At Warp Speed, Recruiting Black Volunteers Takes Time https://t.co/T4zkkUJ7qZ

— Ty Russell (@TRussellCBS4) September 29, 2020

— Ty Russell, Miami

Ghosting Your Friends This Year

Regarding your story about Halloween safety (“How Families Are Keeping Halloween From Turning Into a COVID Nightmare,” Sept. 23), a mother is quoted as saying she will host a small sleepover with relatives instead of trick-or-treating. Isn’t having non-household members over to spend the night considered a high-risk thing to do? I’m confused.

— Sarah Kishler, San Jose, California

Editor’s note: Indeed. With COVID cases on the rise in at least 36 states, especially in the Midwest, CDC Director Robert Redfield said recently: “What we’re seeing as the increasing threat right now is actually acquisition of infection through small household gatherings.”

Such a good way to put it: We pay farmers not to plant. Shouldn’t we pay bars to stay closed? via @NYTOpinion https://t.co/vQWww4B6r0

— leslie ehrlich (@leslieehrlich) October 22, 2020

— Leslie Ehrlich, New York City

A Eureka Moment on Bar Closings

I am a professor at the School of Social Work at the University of Michigan-Ann Arbor. I teach courses in policy management, leadership and community organization. I am in the “wholesale” branch of social work, not the “retail” (clinical) side.

I want to congratulate you on your recent piece on closing the bars (“Analysis: Winter Is Coming for Bars. Here’s How to Save Them. And Us,” Oct. 22). More specifically, your linking the farm program of paying farmers not to grow to paying bars not to open. Reading that I had a eureka moment — stupendous! An idea with broad applications. I have taught about “policy borrowing,” but that idea never crossed my mind — brilliant — one of those once-in-a-lifetime inspirations. The potential application of farm subsidies to other policy arenas opens a door (as in “The Secret Garden”).

I just had to find a way to tell you how intellectually exciting that is.

— John Tropman, Ann Arbor, Michigan

⁦@RosenthalHealth⁩ It’s not just bars that are a central problem in creating “heterogenous” explosive outbreaks. It is bar owners, banded together fiercely opposing reasonable temporary controls. Witness the tavern league in Wisconsin. https://t.co/QQd8qoWVHM

— Steve Morrison (@MorrisonCSIS) October 22, 2020

— Steve Morrison, Washington, D.C.

Plagued by Misinformation

Should you wear a mask? Should you stay home? Is it worse than the flu? Don’t ask the United States government because you won’t get a consistent answer (“Signs of an ‘October Vaccine Surprise’ Alarm Career Scientists,” Sept. 21). Since COVID-19 began to afflict the U.S. in early March, the Trump administration has consistently disseminated unreliable messages leading to surges in cases, mass personal protective equipment shortages and over 220,000 deaths. Inconsistent statements that contradict evidence-based recommendations from well-regarded government agencies have plagued the government’s response to the novel coronavirus.

The administration is, again, pushing controversial treatments and contradicting experts in the premature release of the COVID-19 vaccination, making it one of its most dangerous maneuvers yet. A politically charged release of a vaccine that has not been fully tested will result in low trust levels. While this cutting-corners approach may appear to increase the chance of reelection, it puts the scientific community’s reputation in jeopardy, possibly destroying confidence in vaccination, a topic scientists have been battling for decades. The U.S. is currently leading the world in cases and deaths, proving that an unclear and decentralized approach to the crisis is ineffective. It’s imperative that elected officials begin to work together and take America’s health seriously.

— Amelia Flocchini, Madison, Wisconsin

This is a terrifying scenario. If it comes to this, I promise to actually (gulp) speak up against vaccines. I hope and pray we don’t go down this road.

(In the meantime: existing, approved #VaccinesWork… Go get your flu shot!) https://t.co/ypIl3LojjP

— Megan Ranney MD MPH 🗽 (@meganranney) September 21, 2020

— Dr. Megan Ranney, Providence, Rhode Island

Buckling Down on Analogies

In Elisabeth Rosenthal’s “Analysis: We Follow Laws on Seat Belts and Smoking. Why Not on Masks? (Oct. 1), the seat belt analogy doesn’t quite fit. Seat belts primarily help the user. You should instead use speed limits or laws against driving drunk. Those help others primarily, like masks.

— Thomas Kahn, St. Louis

@gavin4annapolis Useful article given the large number of non-mask wearing scofflaws I routinely see down at the harbor. There is police “presence” but no obvious enforcement efforts. https://t.co/bneoV3WHzN

— Phelim Kine “老 康“ (@PhelimKine) September 30, 2020

— Phelim Kine, Annapolis, Maryland

The Crisis of 911 Mental Health Calls

Reading your story about Daniel Prude, I assume this interests KHN because of the failures in mental health care (“You’re Going to Release Him When He Was Hurting Himself?” Sept. 29). The narrative seems to be that this sort of thing happens only to people of color and not that the proportion of officer-involved use-of-force incidents are far greater among those in mental health crisis than solely because of race. Take this story, for example, in which a Minnesota crisis unit was called twice, refusing first to assist, then a second time not arriving before the child was gassed out of a home where he was alone and shot 11 times on a sunny Friday morning in his own front yard. Then the district attorney used protected health information (PHI) to make a case to justify the killing.

— Don Amorosi, Wayzata, Minnesota

As we focus more on the intersection of the justice system & racial equity, how we approach mental healthcare is – & should be – part of the discussion. The tragic circumstances of Daniel Prude’s death in Rochester shines a spotlight on this. https://t.co/CIt9AGCgxB

— Kody H. Kinsley 😷 (@KodyKinsley) October 2, 2020

— Kody H. Kinsley, Raleigh, North Carolina

This story brought light to the serious problem of lack of access to inpatient psychiatric care. State laws are too restrictive, and hospitals are legally aware and wary. Strong Memorial Hospital clearly did not take into account the patient’s behavior that caused his family and police to act to have him hospitalized. Nevertheless, while I highly appreciate the facts this article brings to light, I am somewhat dismayed that the highlighted topic is race rather than the risk of all mentally ill patients of being denied access to inpatient care. There appears to be a trend of viewing events and news primarily through these identity lenses. My father was Hispanic and also had problems getting access to care before he committed suicide. Thank you for covering this story.

— Christina Nuñez Daw, Greenbelt, Maryland

Heartbreaking Bills, Lawsuit and Bankruptcy — Even With Insurance https://t.co/Ws6dNPfMsJ via @khnews In any other developed country in the world, he would have been taken care of. #Medicare4All now

— Kathy Staub (@mrsstaub) September 25, 2020

— Kathy Staub, Manchester, New Hampshire

When Illness Leaves a Patient Little Choice

I write to expand on Laura Ungar’s Sept. 25 article, “Bill of the Month: Heartbreaking Bills, Lawsuit and Bankruptcy — Even With Insurance.” The article follows the story of a man diagnosed with a rare condition — flu-induced heart disease — who received surprise medical bills, which led to a lawsuit and his filing for bankruptcy. Ungar notes that “a hospital representative suggested [the patient] apply for financial assistance. She followed up by sending him a form, but it went to the wrong address because [the patient] was in the process of moving.”

Though nonprofit hospitals are required to provide some sort of financial aid for indigent patients — according to 26 C.F.R. §1.501(r) of the Internal Revenue Code — the statute does not define exactly how a hospital must provide that aid. For example, a hospital can offer financial assistance but require patients complete extensive documentation to discourage patients from using it. Though it is unclear in Ungar’s article whether the hospital attempted to resend the form or to contact the patient after the form went to the wrong address, it is unlikely. If the hospital was willing to pursue legal action — leading to the patient’s bankruptcy — it is possible the hospital did not attempt to contact the patient again as a tactic to avoid providing financial assistance, a tactic allowed under the IRC.

Ungar failed to mention how patients with chronic conditions would fare in similar circumstances. As someone with a chronic condition, I know firsthand that those with chronic conditions do not pick and choose when they have expensive surgeries or procedures; often, the condition makes that choice. A patient with ulcerative colitis or Crohn’s disease does not choose when he has a flare that might require an emergency colonoscopy or surgery to remove part of their intestines. A flare, by definition, occurs randomly and violently. Often, procedures and surgeries to quell such flares require expensive treatment options. Scheduling such procedures is desirable but unrealistic. Even the patient in the article — who suffered a rare acute condition — did not choose when he needed care; his health made the choice. The article should address chronic conditions but as another example to emphasize her point about how debilitating medical bills can be.

— Daniel Klapper, Pittsburgh

1. Why the “Breaking Bad” plot line (cooking meth to cover cancer treatment costs) is an “only in America” story; 2. Why patient investment in high-connection wellness/care solutions has an ROI given US healthcare system costs. https://t.co/TxWjpYUGqe

— Jim Eischen (@JimEischenEsq) September 25, 2020

— Jim Eischen, San Diego

Oh, Canada Health Care!

Regardless of the platitudinous praises our health care system typically receives, Canada is the only country with a universal plan (theoretically, anyway) that doesn’t also fully cover medications (“New Laws Keep Pandemic-Weary California at Forefront of Health Policy Innovation,” Oct. 1). The bitter pill is: Many low-income outpatients cannot afford to fill their prescriptions and resultantly end up back in the hospital system, thus burdening the system far more than if those patients’ generic-brand medication was also covered. This lesson was learned and implemented by enlightened European nations with genuinely universal all-inclusive health care systems that also cover necessary medication.

Within our system are important treatments that seem to be either universally nonexistent or, more to the point, universally inaccessible, except to those with relatively high incomes and/or generous employer health insurance coverage. The only two health professions’ appointments for which I’m fully covered by the public health plan are the readily pharmaceutical-prescribing psychiatry and general practitioner health professions. Such non-pharmaceutical-prescribing mental health specialists as psychotherapists and counselors (etcetera) are not at all covered.

Logic says we cannot afford to maintain such an absurdity that costs Canada billions extra annually. It’s not coincidental that the absence of universal medication coverage also keeps the pharmaceutical industry’s profits soaring.

— Frank Sterle Jr., White Rock, British Columbia

The White House and many Americans have pinned their hopes for defeating the COVID-19 pandemic on a vaccine being developed at “warp speed.” But some scientific experts warn they’re all expecting too much, too soon.

“Everyone thinks COVID-19 will go away with a vaccine,” said Dr. William Haseltine, chair and president of Access Health International, a foundation that advocates for affordable care.

Ongoing clinical trials are primarily designed to show whether COVID-19 vaccines prevent any symptoms of the disease — which could be as minor as a sore throat or cough. But the trials, which will study 30,000 to 60,000 volunteers, will be too short in duration and too small in size to prove that the vaccines will prevent what people fear most — being hospitalized or dying — by the time the first vaccine makers file for emergency authorization, expected to occur later this year, Haseltine said.

The United States should hold out for an optimal vaccine, with more proven capabilities, Haseltine argued. Others say the crushing toll of the pandemic — which has killed at least 225,000 Americans — demands that the country accept the best vaccine it can achieve within the next few months, even if significant questions remain after its release.

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“There’s a tension between getting every piece of information and getting a vaccine [out] in time to save lives,” said Dr. William Schaffner, a professor of preventive medicine and health policy at the Vanderbilt University Medical Cancer.

“Would we like to know if the vaccine reduces illness or mortality? Of course,” said Dr. Peter Lurie, a former FDA official and the current president of the Center for Science in the Public Interest. “But there is a real time pressure. This is a pandemic. It’s explosive.”

Researchers debated how rigorously to test COVID-19 vaccines at a Thursday public meeting of the Food and Drug Administration advisory committee on vaccines.

“Simply preventing mild cases is not enough and may not justify the risks associated with vaccination,” said Peter Doshi, an associate professor at the University of Maryland School of Pharmacy who detailed his concerns in an editorial in The BMJ.

But vaccine experts say there are good reasons to focus on milder cases of COVID-19.

Vaccines that prevent mild disease typically prevent severe disease, as well, said Dr. Arnold Monto, an epidemiologist at the University of Michigan’s School of Public Health and temporary chair of the vaccine committee.

For example, the original studies of the measles vaccine showed only that it prevented measles, not hospitalizations or deaths, said Dr. Kathleen Neuzil, director of the University of Maryland’s Center for Vaccine Development and Global Health.

Later studies found that measles vaccines dramatically reduce mortality. According to the World Health Organization, worldwide deaths from measles fell by 73% from 2000 to 2018 because of vaccines.

“There simply does not exist an example in vaccinology of vaccines that are effective against mild disease that are not more effective in severe disease,” said Dr. Philip Krause, deputy director of the vaccine office at the FDA’s Center for Biologics Evaluation and Research, at Thursday’s hearing.

Dr. Paul Offit, who developed the rotavirus vaccine, compared preventing the coronavirus to fighting a fire.

“If you put out a small fire in the kitchen, you don’t have to worry about the whole house catching fire,” said Offit, a member of the FDA advisory committee on vaccines.

Proving that a vaccine prevents severe illness and death is harder than showing it protects against mild illness because hospitalizations and deaths are much rarer. That’s especially true among the type of health-conscious people who volunteer for vaccine trials, who are probably more likely than others to wear masks and socially distance, Schaffner said.

“When we looked at hospitalizations in older adults with influenza, those were two-year trials,” Neuzil said. In an ongoing study, in which “we’re looking at typhoid vaccines in nearly 30,000 children, it’s a two-year trial.”

The COVID-19 pandemic has officially infected about 8.7 million Americans. Considering that the true number of Americans infected is estimated to be six to 10 times higher than reported, the mortality rate is about 0.6%, said Dr. Amesh Adalja, a senior scholar at the Johns Hopkins University Center for Health Security.

Scientists agree that the ideal vaccine would provide “sterilizing immunity” — which means preventing not only disease symptoms but any infection with the virus, said Dr. Corey Casper, a vaccinologist with the Fred Hutchinson Cancer Research Center and chief executive officer at the Infectious Disease Research Institute in Seattle.

For example, two doses of measles vaccines prevent 97% of people from even becoming infected with that virus.

Few expect COVID-19 vaccines to be that effective. “We’re trying to lower that bar and determine how much lower is acceptable,” Casper said.

Preventing mild disease could curb disease and prevent illness, Casper said.

“We’re probably not going to have the perfect vaccine,” he said. “But I do think we’re likely to have vaccines that, if we can show they’re safe, can put an inflection point on this pandemic. … I think it’s still important to have a vaccine that has some effect even on mild illness.”

Flu shots aren’t super effective — with effectiveness each year ranging from 19% to 70% — but they’re still extremely useful, Casper said.

During the 2018-19 U.S flu season, vaccination prevented an estimated 4.4 million influenza illnesses, 2.3 million medical visits, 58,000 hospitalizations and 3,500 influenza-associated deaths, according to the Centers for Disease Control and Prevention.

A trial of 30,000 to 60,000 people is already fairly large by historical standards. Dramatically expanding the size beyond that isn’t practical in a compressed time frame, Krause said.

“If the endpoint of the trial is severe disease, the trials may need to be almost 10 times as big,” he said at the meeting. “And those trials would be infeasible and we would never get a vaccine.”

On the other hand, “if there is a vaccine that appears to have high efficacy or appears to be capable of saving lives, one doesn’t want to stop that vaccine if there is a significant chance that it will save lives,” Krause said.

Although the coronavirus vaccine trials are measuring severe disease or death, these are “secondary endpoints,” meaning the current size of the study isn’t large enough to produce a statistically significant answer, Neuzil said.

Whether vaccines reduce severe disease and death will become clear in later studies, after vaccines are distributed, Neuzil said.

Offit said the debate revolves around one question: “How much uncertainty are we willing to live with, knowing that we’re facing a virus that has brought us to our knees?”

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[partner-box]App-based driving services such as Uber, Lyft, DoorDash and Instacart are bankrolling California’s Proposition 22, which would keep their drivers classified as independent contractors, not employees.

Leading into the Nov. 3 election, the ballot measure — which has become the most expensive in state history — is mired in controversy and the subject of a lawsuit from Uber drivers alleging that the company inappropriately pressured them to vote for the initiative.

But what’s occasionally lost in the debate over Proposition 22 are the claims about what it will mean for app-based drivers.

Detractors, like unions and driver advocacy groups, say Proposition 22 would strip drivers of the protections of AB-5, a 2019 California law delayed by legal challenges. The law requires drivers to be classified as employees, which would afford them the associated benefits like paid sick leave, workers’ compensation and access to unemployment insurance.

Supporters, such as ride-sharing companies and the California Chamber of Commerce, say Proposition 22 would give drivers benefits, like a guarantee of minimum earnings and compensation when they are hurt on the job, while allowing them to maintain the flexible schedule of independent contractors.

In an online ad paid for by Lyft, the company says “Prop. 22 will give them … health care benefits.”

That sounds like drivers with Uber, Lyft and other app-based companies will automatically get health insurance if Proposition 22 passes. The truth is a little more complicated.

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What Does ‘Health Care Benefits’ Mean?

We reached out to Lyft to back up its claim, and the company directed us to the “Yes on 22” campaign. This is how the campaign explained “health care benefits”:

Under Proposition 22, drivers who qualify — more on that in a minute — would get a stipend they could use to buy an insurance plan from Covered California, the state’s health insurance marketplace.

That stipend would be calculated like this: App-based companies would look at the statewide average monthly premium of bronze-level plans sold on the Covered California exchange.

The companies would then give qualified drivers a stipend of 82% of the average premium, said Geoff Vetter, a spokesperson for the Yes on 22 campaign. (On average, U.S. employers covered 82% of premiums costs for single coverage in 2019.)

So hypothetically, if bronze plans cost an average of $100 per month, Uber, Lyft or a similar company would provide qualifying drivers with $82 per month.

Drivers would be eligible for the full stipend — all $82 in the hypothetical case — if they average 25 hours per week of “engaged” time, which is time spent driving while there’s a passenger in the car. Time spent driving between passengers would not count.

“Most drivers work part time” and spend about one-third of their time waiting for rides and deliveries, according to the nonpartisan state Legislative Analyst’s Office. Using that equation, drivers would need to work an average of 37.5 hours per week for a single company in order to receive the full stipend.

A driver who averages at least 15 but less than 25 hours of engaged time each week would be eligible for 50% of the stipend — or $41 per month.

The stipend would be similar to employer-sponsored insurance because both employers and employees would contribute to the cost of insurance, Vetter said.

“For the people who do work closer to full time, it does give them that ability to receive health care coverage by getting a typical employer contribution for that coverage,” Vetter said.

Does a Stipend Equal Coverage?

But this stipend bears little resemblance to traditional employer-based insurance, which is what drivers would get if they were considered employees instead of gig workers, said Ken Jacobs, chair of the University of California-Berkeley Center for Labor Research and Education.

“It has very, very little relationship to what anyone would think of as job-based coverage,” Jacobs said. “It’s really wrong to think of this as health insurance.”

For instance, under Proposition 22, the stipends would be calculated and distributed quarterly, based on drivers’ hours. That could force drivers to periodically reassess what kind of coverage they would qualify for and could afford.

With traditional employer-sponsored insurance, a driver would enroll in a plan once per year and the premium wouldn’t change.

A vacation or illness could mean that drivers can’t maintain the hours required by the measure, costing them their stipend — and perhaps their insurance — for the quarter, and stripping them of the stability usually associated with job-based coverage, Jacobs said.

And getting money to buy an individual plan isn’t the same as participating in a large group plan offered by an employer, said Jen Flory, a policy advocate at the Western Center on Law & Poverty, a nonprofit organization that advocates for low-income Californians and opposes Proposition 22.

Covered California plans are typically less generous than the policies employees usually get through work, she said. And bronze-level plans, which have the lowest monthly premiums, also have the highest out-of-pocket costs for medical services.

Consider the deductible, which is how much a person needs to pay out-of-pocket before insurance starts paying for care.

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In 2018, fewer than half of Californians who had work-based insurance had a deductible, and on average, that deductible was $1,402 for a single person, according to research from the California Health Care Foundation. (California Healthline is an editorially independent service of the California Health Care Foundation.)

The deductible on a Covered California bronze plan for an individual in 2021 will be $6,300 for medical services plus $500 for prescription drugs. Proposition 22 ties the stipend “to the highest deductible, highest out-of-pocket plans on the market,” Flory said. “And it’s for workers who aren’t making a whole lot of money.”

Drivers could use the stipend to buy a more generous plan, but the monthly premium would be higher and the stipend would cover less of it.

Depending on their incomes and other factors, drivers may also be eligible for tax credits and state and federal subsidies to help them afford plans on the individual market. But Flory said this amounts to the government subsidizing health insurance that employers should be paying for themselves.

It’s also problematic to base the stipends on a statewide average of bronze premiums because that doesn’t take into account the huge regional differences in the cost of care, said Gerald Kominski, a senior fellow at the UCLA Center for Health Policy Research.

“In the Bay Area, that contribution is going to buy a lot less than it would in Southern California,” Kominski said. “We’re a big state and have a lot of variation of health care costs.”

Our Ruling

The stipend offered under Proposition 22 is a “health care benefit,” but the wording is misleading and ignores critical information.

While neither Lyft nor the Yes on 22 campaign says the proposition will give drivers health insurance, saying that it will offer them “health care benefits” gives the impression that the stipend is similar to traditional job-based coverage. It’s not.

Drivers who value the ability to make their own schedules would have to figure out how to work an average of nearly 40 hours a week — essentially full time — to receive the full stipend. The stipend would cover a fraction of the premiums for health insurance that’s typically less generous than what they’d get as employees.

Moreover, because drivers’ stipends could change quarterly based on their driving time — which could be affected by vacation or illness — any coverage purchased with the stipend could carry a cloud of uncertainty.

We rate this claim as Half True.

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La Casa Blanca y muchos estadounidenses han depositado sus esperanzas de derrotar a la pandemia de COVID-19 en una vacuna que se está desarrollando a la “velocidad de la luz”. Pero algunos científicos advierten que se espera demasiado, y demasiado pronto.

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“Todos piensan que COVID-19 desaparecerá con una vacuna”, dijo el doctor William Haseltine, presidente de Access Health International, una fundación que aboga por una atención asequible.

Los ensayos clínicos en curso están diseñados principalmente para mostrar si las vacunas para COVID-19 previenen algún síntoma de la enfermedad, que podría ser tan leve como dolor de garganta o tos.

Pero estos ensayos, que estudian a unos 30,000 a 60,000 voluntarios, serán demasiado breves y demasiado pequeños en número de participantes, para demostrar que las vacunas evitarán lo que la gente más teme, tener que ser hospitalizadas o morir, para cuando los primeros fabricantes presenten una solicitud de autorización de emergencia, algo que se espera que ocurra a finales de este año, expicó Haseltine.

Estados Unidos debería esperar una vacuna óptima, con capacidades más probadas, argumentó Haseltine. Otros dicen que el abrumador número de víctimas de la pandemia, que ha matado al menos a 225,000 estadounidenses, exige que el país acepte la mejor vacuna que pueda lograr en los próximos meses, incluso si persisten dudas importantes después de su lanzamiento.

“Existe una tensión entre obtener cada pieza de información y obtener una vacuna a tiempo para salvar vidas”, dijo el doctor William Schaffner, profesor de medicina preventiva y políticas de salud en el Centro Médico de la Universidad Vanderbilt.

“¿Nos gustaría saber si la vacuna reduce la enfermedad o la mortalidad? Por supuesto”, dijo el doctor Peter Lurie, ex funcionario de la FDA y actual presidente del Center for Science in the Public Interest. “Pero hay una presión de tiempo real. Esta es una pandemia”.

Los investigadores debatieron cuán rigurosamente probar las vacunas para COVID-19 en una reunión pública del comité asesor sobre vacunas de la Administración de Alimentos y Medicamentos (FDA).

“La simple prevención de los casos leves no es suficiente y puede que no justifique los riesgos asociados con la vacunación”, dijo Peter Doshi, profesor asociado de la Escuela de Farmacia de la Universidad de Maryland, quien detalló sus preocupaciones en un editorial de The BMJ.

Pero expertos en vacunas dicen que hay buenas razones para centrarse en los casos más leves de COVID-19.

Las vacunas que previenen enfermedades leves también suelen prevenir enfermedades graves, dijo el doctor Arnold Monto, epidemiólogo de la Escuela de Salud Pública de la Universidad de Michigan y presidente temporal del comité de vacunas.

Por ejemplo, los estudios originales de la vacuna contra el sarampión mostraron que solo prevenía el sarampión, no las hospitalizaciones o las muertes, dijo la doctora Kathleen Neuzil, directora del Centro de Desarrollo de Vacunas y Salud Global de la Universidad de Maryland.

Pero estudios posteriores encontraron que estas vacunas reducían drásticamente la mortalidad. Según la Organización Mundial de la Salud (OMS), las muertes por sarampión en todo el mundo disminuyeron en un 73% entre 2000 y 2018 debido a las vacunas.

“Simplemente no existe un ejemplo en la inmunización con vacunas que sean efectivas contra enfermedades leves que no sean más efectivas en cuadros graves”, dijo el doctor Philip Krause, subdirector de la oficina de vacunas del Centro de Evaluación e Investigación Biológica de la FDA.

El doctor Paul Offit, quien desarrolló la vacuna contra el rotavirus, comparó la prevención del coronavirus con la lucha contra un incendio.

“Si apagas un pequeño incendio en la cocina, no tienes que preocuparte de que toda la casa se incendie”, dijo Offit, miembro del comité asesor de vacunas de la FDA.

Demostrar que una vacuna previene enfermedades graves y la muerte es más difícil que demostrar que protege contra enfermedades leves porque las hospitalizaciones y las muertes son mucho más raras. Eso es especialmente cierto entre el tipo de personas conscientes de su salud que se ofrecen como voluntarias para los ensayos de vacunas, y que seguramente tienen más probabilidades que otras de usar máscaras y distanciarse socialmente, dijo Schaffner.

“Cuando analizamos las hospitalizaciones en adultos mayores con influenza, fueron ensayos de dos años”, dijo Neuzil. En un estudio en curso, en el que “estamos analizando las vacunas contra la fiebre tifoidea en casi 30.000 niños, es una prueba de dos años”.

La pandemia de COVID-19 ha infectado oficialmente a unos 8,7 millones de estadounidenses. Pero teniendo en cuenta que se estima que el número real de infectados es de seis a 10 veces mayor que lo informado, la tasa de mortalidad es de aproximadamente el 0,6%, dijo el doctor Amesh Adalja, investigador principal del Centro de Seguridad Sanitaria de la Universidad Johns Hopkins.

Los científicos están de acuerdo en que la vacuna ideal proporcionaría “inmunidad esterilizante”, lo que significa prevenir no solo los síntomas de la enfermedad, sino también cualquier infección por el virus, dijo el doctor Corey Casper, experto en vacunas del Centro de Investigación del Cáncer Fred Hutchinson y director ejecutivo del Instituto de Investigación de Enfermedades Infecciosas en Seattle.

Por ejemplo, dos dosis de vacunas contra el sarampión evitan que el 97% de las personas se infecten con ese virus.

Pocos esperan que las vacunas para COVID-19 sean tan efectivas. “Estamos tratando de bajar esa expectativa y determinar cuánto más bajo es aceptable”, dijo Casper.

La prevención de una enfermedad leve podría frenar la enfermedad y prevenirla, dijo Casper.

“Probablemente no vamos a tener la vacuna perfecta”, agregó. “Pero creo que es probable que tengamos vacunas que, si podemos demostrar que son seguras, pueden poner un punto de inflexión en esta pandemia. Creo que sigue siendo importante tener una vacuna que tenga algún efecto incluso en enfermedades leves”.

Las vacunas contra la gripe no son muy eficaces, con una efectividad anual que oscila entre el 19% y el 70%, pero siguen siendo extremadamente útiles, dijo Casper.

Durante la temporada de influenza 2018-19 en los Estados Unidos, la vacunación previno aproximadamente 4,4 millones de enfermedades por gripe, 2,3 millones de visitas médicas, 58,000 hospitalizaciones y 3,500 muertes asociadas a este virus, según los Centros para el Control y Prevención de Enfermedades (CDC).

Un ensayo de 30,000 a 60,000 personas ya es bastante grande según los estándares históricos. Expandir drásticamente el tamaño más allá de eso no es práctico en un marco de tiempo limitado, dijo Krause.

“Si el criterio de valoración del ensayo es una enfermedad grave, es posible que los ensayos tengan que ser unas 10 veces más grandes”, explicó. “Y esos ensayos serían inviables y nunca obtendríamos una vacuna”.

Por otro lado, “si hay una vacuna que parece tener una alta eficacia o parece ser capaz de salvar vidas, uno no quiere frenarla, si existe una posibilidad significativa de que salve vidas”, dijo Krause.

Aunque los ensayos de la vacuna contra el coronavirus miden la enfermedad grave o la muerte, estos son “criterios de valoración secundarios”, lo que significa que el tamaño actual del estudio no es lo suficientemente grande como para producir una respuesta estadísticamente significativa, dijo Neuzil.

Si las vacunas reducen la enfermedad grave y la muerte se aclarará en estudios posteriores, después de que se distribuyan las vacunas, dijo Neuzil.

Offit dijo que el debate gira en torno a una pregunta: “¿Con cuánta incertidumbre estamos dispuestos a vivir, sabiendo que nos enfrentamos a un virus que nos ha puesto de rodillas?”.

Can’t see the audio player? Click here to listen.

Sixty-five-year-old Karen Endicott-Coyan is living with a blood cancer.  Her chemotherapy takes less than 30 minutes. Before the hospital closed, it was just a short drive into the small town of Fort Scott, Kansas, for her to get treatment.

But these days getting to chemo means a trek on rural roads and narrow highways, driving help from her sister-in-law and some Ritz crackers tucked into her purse to steady her stomach on the way home. The whole trip should take less than three hours. Endicott-Coyan puts on her makeup, her diamond earrings and powers through.

“If I can help it, I’m not going to go over there looking like a sick person,” Endicott-Coyan said. “I don’t like looking like a sick person. That’s just me.”

Endicott-Coyan had a long career in hospital administration, and she uses that expertise to try to smooth out her newly fractured health care. But during every minute of the trip, a nagging worry at home steals her energy and attention. In this chapter of the podcast, host-reporter Sarah Jane Tribble goes along for the ride and is witness to the stress and frustration.

The journey illuminates one reason people in rural America are more likely to die from cancer than patients in metro areas.

Click here to read the episode transcript.

“Where It Hurts” is a podcast collaboration between KHN and St. Louis Public Radio. Season One extends the storytelling from Sarah Jane Tribble’s award-winning series, “No Mercy.”

Subscribe to Where It Hurts on iTunes, Stitcher, Google, Spotify or Pocket Casts.

And to hear all KHN podcasts, click here.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

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