Category: From California Healthline.org

If we really want to stem the spread of the coronavirus as winter looms and we wait for a vaccine, here’s an idea: The government should pay bars, many restaurants and event venues to close for some months.

That may sound radical, but it makes scientific sense and even has a political precedent. We pay farmers not to cultivate some fields (in theory, at least, to protect the environment), so why not compensate owners to shut their indoor venues (to protect public health)?

In the past nine months, we’ve learned a lot about this particular coronavirus and how it’s most likely to spread. Drinking establishments and indoor event venues have emerged as ideal environments for transmission. And there’s good scientific logic to explain that.

Viruses are not villains who go after their prey; they’re passive opportunists. Some spread through food or when left on surfaces. Others, like this coronavirus, can be transmitted through tiny droplets that can linger in the air after an infected person coughs, talks or breathes. The virus spreads most easily indoors and particularly in crowded, poorly ventilated places.

More important, people can be infectious while their bodies are incubating this virus for a couple of days before they develop symptoms, or even if they never develop symptoms at all. So you might go to a bar or a wedding feeling top-notch, or just maybe a little off. Drink, kiss and dance till you drop. Then you wake up the next morning feeling awful. It’s not just a hangover. It’s COVID-19.

That explains why this virus is exceedingly contracted at “superspreader” events. (More so than the flu, according to the Centers for Disease Control and Prevention.) A person who is shedding a good deal of the virus still feels well enough to hang out in a tight (likely indoor) space where people mingle boisterously with others they don’t know or don’t see often. And they can’t wear masks, because they’re drinking.

No wonder bars are a problem.

In scientific parlance, the coronavirus is more of a “heterogeneous” than a homogeneous spreader, according to Bjarke Frost Nielsen, a researcher at the Niels Bohr Institute at the University of Copenhagen. Along with his colleague Kim Sneppen, he uses mathematical modeling to study the pattern of the spread of the virus. That heterogeneous spread means that it tends to expand in burst-like outbreaks, often centered on a meeting place — a hot spot — rather than oozing slowly across a country.

There is some good news in this finding, Nielsen told me: “You can close down certain types of gatherings and a few types of places and tamp down the majority of the spread of the disease. And you can carry on with the rest as pretty normal.”

Back when we knew little about the novel coronavirus, the government responded with a hammer. The Paycheck Protection Program treated all small businesses equally, providing them with loans to shut down so long as they paid their employees. Now we can use more delicate instruments.

Food and clothing stores — indeed, most any kind of shop — can function safely with masking and attention to distancing and sanitizing. We don’t go to these places to chat, and we can all wear masks inside them. Factories and assembly lines can protect workers with masking and spacing. Schools can do the same for students.

Even movie theaters can arguably safely operate with masked patrons, quality ventilation systems and spacing between viewers or viewing groups. They just won’t be able to sell as many seats.

But bars and restaurants that depend on packed indoor dining and concert halls with dance floors? Most are attractive for exactly the reasons that make them such petri dishes for the coronavirus — the crowding, the drinking, the carousing with new, different people.

That’s why some bar and restaurant owners say they would welcome a program that compensated them to shut their doors this winter. Peter Kurzweg, who co-owns three of what he calls “drink forward” establishments in Pittsburgh that used to have bustling happy hours, says that “bars and restaurants are unique in that to be really safe, they have to mitigate to a point that it’s not a bar or restaurant experience anymore.”

He and his partners have so far weathered the pandemic with outdoor seating on the sidewalk and in an alley. They have taken advantage of government loan programs. They have invested in tents and heaters and encouraged patrons to “lean in” to having fun outside. But as fall turns to winter in Pittsburgh, he knows it won’t last. “I walk around saying, ‘Winter is coming. Winter is coming.’ We need to do everything we can to survive.”

Some states have allowed restaurants to open indoors at 25% or 50% capacity — indeed, that is permitted now in Pittsburgh. But Kurzweg has not done so, because he doesn’t feel it’s safe. Anyway, he added, “No bar or restaurant can make it at that capacity — on the best days in normal years, our profit margin is 10%.”

Some very spacious high-end restaurants, and those in temperate climates, might be able to make it work. Most can’t.

Bars and other venues that depend on drinks are not essential services. We want them to survive so that in the future we can enjoy them. So why not pay owners who cannot keep their businesses afloat safely this COVID-tainted year an average of their normal monthly income to shut down for some months? They would keep paying their employees and help break the chain of coronavirus transmission. Maybe we could get creative and ask them to use their kitchens to help feed Americans who are going hungry.

With bars closed, you could still drink and socialize with smaller groups of people at home or outdoors, when the weather allows it. That may not be quite as much fun, but nothing is much fun while the coronavirus is around.

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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Facing a pandemic, record unemployment and unknown future costs for COVID-19 treatments, health insurers selling Affordable Care Act plans to individuals reacted by lowering rates in some areas and, overall, issuing only modest premium increases for 2021.

“What’s been fascinating is that carriers in general are not projecting much impact from the pandemic for their 2021 premium rates,” said Sabrina Corlette, a research professor at the Center on Health Insurance Reforms at Georgetown University in Washington, D.C.

Although final rates have yet to be analyzed in all states, those who study the market say the premium increases they have seen to date will be in the low single digits — and decreases are not uncommon.

That’s good news for the more than 10 million Americans who purchase their own ACA health insurance through federal and state marketplaces. The federal market, which serves 36 states, opens for 2021 enrollment Nov. 1, with sign-up season ending Dec. 15. Some of the 14 states and the District of Columbia that operate their own markets have longer enrollment periods.

The flip side of flat or declining premiums is that some consumers who qualify for subsidies to help them purchase coverage may also see a reduction in that aid.

Here are a few things to know about 2021 coverage:

It might cost about the same this year — or even less.

Despite the ongoing debate about the ACA — compounded by a Supreme Court challenge brought by 20 Republican states and supported by the Trump administration — enrollment and premium prices are not forecast to shift much.

“It’s the third year in a row with premiums staying pretty stable,” said Louise Norris, an insurance broker in Colorado who follows rates nationwide and writes about insurance trends. “We’ve seen modest rate changes and influx of new insurers.”

That relative stability followed ups and downs, with the last big increases coming in 2018, partly in response to the Trump administration cutting some payments to insurers.

Those increases priced out some enrollees, particularly people who don’t qualify for subsidies, which are tied both to income and the cost of premiums. ACA enrollment has fallen since its peak in 2016.

Charles Gaba, a web developer who has since late 2013 tracked enrollment data in the ACA on his ACASignups.net website, follows premium changes based on filings with state regulators. Each summer, insurers must file their proposed rates for the following year with states, which have varying oversight powers.

Gaba said the average requested increase next year nationwide is 2.1%. When he looked at 18 states for which regulators have approved insurers’ requested rates, the percentage is lower at 0.4%.

Another study, by KFF, of preliminary premiums filed this summer had similar findings: Premium changes in 2021 would be modest, only a few percentage points up or down. (KHN is an editorially independent program of KFF.)

It’s still worth it to shop around.

Actuaries and other experts say premiums vary by state or region — even by insurer — for a number of reasons, including the number and relative market power of insurers or hospitals in an area, which affects the ability of insurers to negotiate rates with providers.

Because subsidies are tied to each region’s benchmark plan, and those premium costs may have gone down, subsidies also could decrease. (Benchmark plans are the second-lowest-priced silver plan in a region.)

Switching to the benchmark plan can help consumers maintain how much they spend in premiums.

Enrollees should update their financial information, particularly this year when many are affected by work reduction or job losses. “They might be eligible for a bigger” subsidy, said Myra Simon, executive director of commercial policies for America’s Health Insurance Plans, the industry lobbying group.

Enrollees can update their information online, or call their federal or state marketplace for assistance. Insurance brokers, too, can aid people in signing up for ACA plans. When shopping, consumers should check whether the doctors and hospitals they want to use are included in the plan’s network.

Premiums are just one part of the equation. Consumers should also look closely at annual deductibles, because the trade-off of going with a lower-cost premium may well be higher annual deductibles that must be met before much of the coverage kicks in.

“We encourage people to consider all their options,” said Simon.

What’s behind the variation.

Enrollees in some states next year will see premium decreases, according to Gaba’s website: Maine, for example, shows a 13% drop in weighted average premium prices, while Maryland’s is down almost 12%. At the same time, Indiana’s average is up 10%. And Kentucky is up 5%.

Both Maine and Maryland attribute the decrease to state programs that provide reinsurance payments to health insurers to help offset high-cost medical claims.

In Florida, regulators say insurance premiums will rise about 3%, while the state exchange in California is reporting just over a half-percent increase, its lowest average increase since opening in 2014. Officials in California cite factors that include an influx of healthier enrollees and a reduction in fees that insurers pay.

Other factors affecting rates include how much state regulators step in to alter initial rate filings, along with a provision of the ACA that requires insurers to spend at least 80% of revenue on direct medical care. If insurers don’t meet that standard, they must issue rebates to policyholders. Many insurers were already on the hook to return money in 2020 for previous years.

Most insurers did not cite additional COVID treatment or testing costs as factors in their requested rate increase, Gaba said. Even those that did, however, mainly found them unnecessary because of reduced expenditures resulting from patients delaying elective care during the spring and summer.

Indeed, many insurers in the second quarter posted record profits.

“Some of them thought, ‘We’re going to make more than we thought this year in profits, so let’s not be aggressive with pricing next year,’” said Donna Novak, a member of the American Academy of Actuaries’ Individual and Small Group Markets Committee.

A smaller factor may be the repeal of a fee paid by insurers on premiums. Part of the ACA, the fee was permanently eliminated by the Trump administration effective for 2021.

Your choice of insurers may have widened.

More insurers, including UnitedHealth Group, either stepped back into that individual market or expanded into new counties.

“Insurers are seeing a profit or potential for it,” said John Dodd, an insurance broker in Columbus and past president of the Ohio Association of Health Underwriters.

Rates are down in general across his state for ACA plans, he said, and he expects agents to be busier than ever, simply because there are more plan offerings and choices to make and people want help.

Insurers, he said, like the way the ACA is working.

“People on TV who say it’s not working, they don’t know what they’re talking about,” said Dodd. “It’s working well [for insurers] and every year it gets better.”

New stuff in some states, including a public option.

Residents of New Jersey and Pennsylvania will buy coverage from new state-based marketplaces for 2021, after those states pulled out of the federal healthcare.gov, which now covers 36 states.

Lawmakers in those states said running their own marketplaces gives them more control and may save them money over time.

In 19 Washington state counties, insurers are offering “public option plans,” which have all the standard benefits, including lower deductibles, and must meet additional quality standards.

As envisioned, the public option plans aimed to be less expensive, with the legislation tying payment rates to Medicare. Insurers offering a public option must stick to an aggregate cap of paying doctors, hospitals and other medical providers an average of 160% of what Medicare would pay for the same services.

When the premium rates came in, however, the five insurers offering the plans had varying prices. Not all parts of the state have the option, but where they do, two of the public option insurers have premiums that are either lower than other plans in the area or are the lowest-cost plan the insurer offers.

But three are more expensive.

The state’s marketplace staff said the higher prices may reflect a number of things, from difficulty getting the program started during COVID-19 to a lack of incentives to get providers to participate.

It could also just be normal first-year jitters.

“It’s Year One. As with any market entry strategy, people are pretty conservative,” said Michael Marchand, chief marketing officer of the Washington Health Benefit Exchange.

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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If Joe Biden wins the presidency in November, health is likely to play a high-profile role in his agenda. Just probably not in the way he or anyone else might have predicted.

Barring something truly unforeseen, it’s fairly certain that on Jan. 20 the U.S. will still be in the grip of the coronavirus pandemic — and the economic dislocation it has caused. Coincidentally, that would put a new President Biden in much the same place as President Barack Obama at his inauguration in 2009: a Democratic administration replacing a Republican one in the midst of a national crisis.

Obama had only a financial crisis to deal with. Still, Biden would have a couple of advantages his Democratic predecessor lacked, including the fact that, as vice president, he helped guide the country through that financial meltdown. He’s also had time to plan how to address the crisis, which was not the case in 2009, when the economy was in freefall just as the new administration was taking office.

But like Obama before him, Biden will face a long must-do list on taking office. He will have to tackle the pandemic and economic crisis before he can turn to some of the big health changes he’s promised, such as expanding the reach of the Affordable Care Act, creating a “public option” that would allow every American to enroll in a government-sponsored plan and lowering the eligibility age for Medicare from 65 to 60.

And even if Democrats do retake the Senate majority and keep control of the House, it is unlikely the majority in either chamber will be as large as in 2009, when Obama had 60 Senate votes.

Still, no matter what the partisan makeup of Congress, “priority one is to get the COVID response going,” said Len Nichols, a professor of health policy at George Mason University.

Biden’s COVID plan includes taking major responsibility for the pandemic back from the states. His federal response would include more money for, and coordination of, testing and contact tracing; ensuring adequate protective equipment for health professionals; and assuring the public that new treatments and vaccines will be based on science, not politics.

In an updated version of his plan, Biden has also promised that one of his first calls if he is elected will be to Dr. Anthony Fauci, the government’s top infectious disease expert, who has been derided by President Donald Trump. “Dr. Fauci will have full access to the Oval Office and an uncensored platform to speak directly to the American people — whether delivering good news or bad,” says Biden’s website.

Biden’s COVID plan also addresses the economy — including calls for emergency paid leave for workers dislocated by the pandemic and more financial aid for workers, families and small businesses.

“If we’ve learned anything, it is that the health sector and the economy are not two separate spheres. They are connected,” said Nichols. “I think health care and the economy are complementary and will be for the foreseeable future.”

Assuming Biden gets beyond the pandemic and recession, he could move onto some of his bigger health promises, including expanding eligibility for Medicare, creating a “public option” health plan and boosting premium subsidies for the ACA.

Biden took heat throughout the primaries for his “moderate” approach to improving health insurance access and costs, compared with the “Medicare for All” plans for a government-run system supported by his top rivals, Sens. Bernie Sanders (I-Vt.) and Elizabeth Warren (D-Mass.). But that doesn’t mean his far less sweeping approach would be easy to get through Congress.

“There’s a really big difference when you’re running the government than when you’re running for office,” said Dan Mendelson, a former Clinton administration health official and founder of the health consulting firm Avalere Health.

Many of Biden’s proposals, including a public option and larger subsidies to help low- and middle-income people pay for insurance, are the very things that an overwhelmingly Democratic Congress could not pass as part of the original Affordable Care Act in 2010. Conservative Democratic senators objected to the plan.

“We pushed,” Obama said in a recent interview on the podcast “Pod Save America,” talking about the public option. “I needed 60 votes to get it through the Senate. Joe Lieberman, Ben Nelson and a couple others said, ‘I’m not voting for a public option.’”

Mendelson said another big obstacle is that for all the detail Biden has in his health plan, concepts like the public option “are not well-defined, and there are many different theories of what it should be and where it should be fielded. There’s no common vision about what it really means.”

The same thing is true, he added, for something that seems as simple as reducing the Medicare eligibility age. “More than half these people have commercial insurance,” he said. “What will happen to them?”

Grace-Marie Turner, of the conservative Galen Institute, suggested Biden — or Trump, if he’s reelected — might be better served by pursuing one of the more bipartisan health issues that already have broad support from the public, like prescription drug prices or “surprise” medical bills patients receive after getting care from a doctor outside their insurance network while being treated at an in-network facility. “It would be a big statement,” she said. “Whoever wins would then have the wind at their back.”

But even those issues have a way of getting complicated. Both Democrats and Republicans say they want to bring down drug prices, but Republicans are vehemently against one of the Democrats’ preferred ways of doing that: by allowing Medicare to negotiate with drugmakers. And surprise medical billing has so far defied efforts to fix it, as Congress seems unable to choose between health insurers and health providers, who each want the other to bear the additional costs.

As always, even when health is at the top of the agenda, it proves difficult to address.

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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President Donald Trump has repeatedly claimed to have saved 2 million lives from COVID-19 through his actions to combat the disease.

Recently, he made the assertion during the NBC News town hall on Oct. 15 that replaced the second presidential debate.

“But we were expected to lose, if you look at the original charts from original doctors who are respected by everybody, 2,200,000 people,” Trump said. “We saved 2 million people,” he added.

He mentioned the same ballpark figure during a Sept. 15 ABC News town hall and posted a tweet about it on Oct. 13.

Others in the Trump administration have also pointed to the 2.2 million figure. Vice President Mike Pence referenced it during the vice presidential debate on Oct. 7. So did Health and Human Services Secretary Alex Azar during a Sept. 20 “Meet the Press” television interview.

Where did this number come from? And is there any truth to the idea that Trump is responsible for saving 2 million lives from COVID-19? Since Trump continues to use it to claim success, we decided to look into it.

What We Know About the ‘2 Million’

The White House and the Trump presidential campaign did not respond to our request for evidence supporting the idea that roughly 2 million lives were spared.

It appears to have first been mentioned by the president during a March 29 White House coronavirus task force press briefing, when Trump and Dr. Deborah Birx, task force coordinator, explained they were asking Americans to stay home from mid-March through the end of April, because mathematical models showed 1.6 million to 2.2 million people could die from COVID-19.

The warning stemmed from a paper authored by Neil Ferguson, an epidemiology professor at Imperial College London. He modeled how COVID-19 can spread through a population in different scenarios, including what would happen if no interventions were put in place and people continued to live their daily lives as normal.

In the paper, Ferguson wrote, “In total, in an unmitigated epidemic, we would predict approximately 510,000 deaths in [Great Britain] and 2.2 million in the US.”

Ferguson did not respond to our request to talk through the study with him. But in a July email interview with HuffPost, he said Trump’s boasting of saving 2.2 million lives isn’t true, because the pandemic isn’t over.

Andrea Bertozzi, a mathematics professor at UCLA, said it was important to remember the 2.2 million figure was derived from a modeling scenario that would almost certainly never happen — which is that neither the government nor individuals would change their behavior at all in light of COVID-19.

The study didn’t mean to say 2.2 million people were absolutely going to die, but rather to say, “Hold on, if we let this thing run its course, bad things could happen,” said Bertozzi. Indeed, the results from the study did cause government leaders in both the U.S. and the United Kingdom to implement social distancing measures.

Experts also pointed out that the U.S. has the highest COVID-19 death toll of any country in the world — more than 220,000 people — and among the highest death rates, according to the Johns Hopkins Coronavirus Resource Center.

“I don’t think we can say we’ve prevented 2 million deaths, because people are still dying,” said Justin Lessler, an associate professor of epidemiology at Johns Hopkins Bloomberg School of Public Health.

In some instances when using the 2 million estimate, Trump and others in his administration cited the China travel restrictions for saving lives, while other times they’ve credited locking down the economy. We’ll explore whether either statement holds water.

Did Travel Restrictions Do Anything?

Trump implemented travel restrictions for some people traveling from China beginning Feb. 2 and for Europe on March 11. But experts say and reports show the restrictions don’t appear to have had much effect because they were put in place too late and had too many holes.

The Centers for Disease Control and Prevention reported the first cases of coronavirus in the U.S. arrived in mid-January. So, since the travel bans were put in place after COVID-19 was already spreading in the U.S., they weren’t effective, said Josh Michaud, associate director for global health policy at the KFF. (KHN is an editorially independent program of KFF.)

A May study supports that assessment. The researchers found the risk of transmission from domestic air travel exceeded that of international travel in mid-March.

Many individuals also still traveled into the U.S. after the bans, according to separate investigations by The New York Times and the Associated Press.

Based on all this, experts said there isn’t evidence to support the idea that the travel restrictions were the principal intervention to reduce the transmission of COVID-19.

What About Lockdowns?

On the other hand, the public health experts we talked to said multiple global and U.S.-focused studies show that lockdowns and implementing social distancing measures helped to contain the spread of the coronavirus and thus can be said to have prevented deaths.

However, Trump can’t take full credit for these so-called lockdown measures, which ranged from closing down all but essential businesses to implementing citywide curfews and statewide stay-at-home orders. On March 16, after being presented with the possibility of the national death tally rising to 2.2. million, the White House issued federal recommendations to limit activities that could transmit the COVID-19 virus. But these were just guidelines and were recommended to be in effect only through April 30.

Most credit for putting in place robust social distancing measures belongs to state and local government and public health officials, many of whom enacted stronger policies than those recommended by the White House, our experts said.

“I don’t think you can directly credit the federal government or the Trump administration with the shutdown orders,” said Lessler. “The way our system works is that the power for public health policy lies with the state. And each state was making its own individual decision.”

Some studies also explore the potential human costs of missed opportunities. If lockdowns had been implemented one or two weeks earlier than mid-March, for instance, which is when most of the U.S. started shutting down, researchers estimated that tens of thousands of American lives could have been saved. A model also shows that if almost everyone wore a mask in the U.S., tens of thousands of deaths from COVID-19 could have been prevented.

Despite these scientific findings, Trump started encouraging states — even those with high transmission rates — to open back up in May, after the White House’s recommendations to slow the spread of COVID-19 expired. He has also questioned the efficacy of masks, said he wouldn’t issue a national mask mandate and instead left mask mandate decisions up to states and local jurisdictions.

Our Ruling

President Trump is claiming that without his efforts, there would have been 2 million deaths in the U.S. from COVID-19.

But that 2 million number is taken from a model that shows what would happen without any mitigation measures — that is, if citizens had continued their daily lives as usual, and governments did nothing. Experts said that wouldn’t have happened in real life.

And while lockdowns and social distancing have indeed been proven to prevent COVID-19 illness and deaths, credit for that doesn’t go solely to Trump. The White House issued federal recommendations asking Americans to stay home, but much stronger social distancing measures were enforced by states.

Travel restrictions implemented by Trump perhaps helped hold down transmission in the context of broader efforts, but on their own, they don’t seem to have significantly reduced the transmission rate of the coronavirus.

We rate this claim Mostly False.

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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SACRAMENTO — In an election year dominated by a chaotic presidential race and splashy statewide ballot initiative campaigns, Californians are being asked to weigh in on the value of stem cell research — again.

Proposition 14 would authorize the state to borrow $5.5 billion to keep financing the California Institute for Regenerative Medicine (CIRM), currently the second-largest funder of stem cell research in the world. Factoring in interest payments, the measure would cost the state about $7.8 billion over about 30 years, according to the nonpartisan state Legislative Analyst’s Office.

In 2004, voters approved a $3 billion, 30-year bond via Proposition 71 to get the state agency up and running and to seed research. That measure will end up costing taxpayers about $6 billion, including interest.

During that first campaign, voters were told research funded by the measure could lead to cures for cancer, Alzheimer’s and other devastating diseases, and that the state could reap millions in royalties from new treatments.

Yet most of those ambitions remain unfulfilled.

“I think the initial promises were a little optimistic,” said Kevin McCormack, CIRM’s senior director of public communications, about how quickly research would yield cures. “You can’t rush this kind of work.”

So advocates are back after 16 years for more research money, and to increase the size of the state agency.

Stem cells hold great potential for medicine because of their ability to develop into different types of cells in the body, and to repair and renew tissue.

When the first bond measure was adopted in 2004, the George W. Bush administration refused to fund stem cell research at the national level because of opposition to the use of one kind of stem cell: human embryonic stem cells. They derive from fertilized eggs, which has made them controversial among politicians who oppose abortion.

Federal funding resumed in 2009, and thus far this year the National Institutes of Health has spent about $321 million on human embryonic stem cell research.

But advocates for Proposition 14 say the ability to do that research is still tenuous. In September, Republican lawmakers sent a letter to President Donald Trump urging him to cut off those funds once again.

The funding from California’s original bond measure was used to create the new state institute and fund grants to conduct research at California hospitals and universities for diseases such as blood cancer and kidney failure. The money has paid for 90 clinical trials.

A 2019 report from the University of Southern California concluded the center has contributed about $10.7 billion to the California economy, which includes hiring, construction and attracting more research dollars to the state. CIRM funds more than 56,500 jobs, more than half of which are considered high-paying.

Despite the campaign promises, just two treatments developed with some help from CIRM have been approved by the Food and Drug Administration in the past 13 years, one for leukemia and one for scarring of the bone marrow.

But it’s a bit of a stretch for the institute to take credit for these drugs, said Jeff Sheehy, a CIRM board member who does not support the new bond measure. He said the agency funded the researcher whose lab discovered and developed the drugs, but CIRM holds no rights to those drugs and doesn’t receive royalties from them.

The state has received about $518,000 in revenue from licensing other institute-funded discoveries, such as devices, McCormack said.

McCormack also pointed to some promising stem cell therapies still in clinical trials, such as a treatment that has cured 50 children of severe combined immunodeficiency, a genetic disorder often called “bubble baby” disease, and others that have led to “dramatic” improvements in paralysis and blindness, he said.

The campaigns for both bond measures may be giving people unrealistic expectations and false hope, said Marcy Darnovsky, executive director of the Center for Genetics and Society. “It undermines people’s trust in science,” Darnovsky said. “No one can promise cures, and nobody should.”

Robert Klein, a real estate developer who wrote both ballot measures, disagrees. He was inspired to invest in stem cell research after he lost his youngest son to Type 1 diabetes. He said some of CIRM’s breakthroughs are helping patients right now.

“What are you going to do if this doesn’t pass? Tell those people we’re sorry, but we’re not going to do this?” Klein said. “The thought of other children needlessly dying is unbearable.”

Sheehy, who has served on the agency’s board for 16 years, said he’s proud of the work the institute has done but believes it should be funded through the legislature, not by borrowing more money.

“The promise was that it would pay for itself and it hasn’t,” Sheehy said. “We can’t really afford it, and this is the worst way to pay for it.”

Even if CIRM isn’t turning a profit, some researchers and private companies are benefiting from the public money. Take the company Forty Seven Inc., named after a human protein and co-founded by Irving Weissman, director of Stanford University’s stem cell research program. The state stem cell agency awarded more than $15 million to Forty Seven, and $30 million to Weissman at Stanford for research.

That money fueled research that uncovered a promising treatment for several different cancers. Gilead Sciences, the pharmaceutical giant, bought Forty Seven in 2018 for $4.9 billion. Of that, $21.2 million went back to CIRM to pay back Forty Seven’s research grants, with interest.

“Gilead will make far more than that if it turns out to be lucrative,” said Ameet Sarpatwari, a professor of medicine at Harvard Medical School who studies drug development.

Because this kind of work is both expensive and risky, private companies are reluctant to pay for early research, when scientists have no idea if their work will yield results, let alone profits, Sarpatwari said. So the state pays for this work, and drug companies come in to finance later-stage research once a molecule looks promising — and ultimately reap the profits.

Case in point: Fedratinib, one of the two FDA-approved drugs funded partly by CIRM, can cost about $20,000 for 120 capsules, according to GoodRx.

“We’re socializing the risk of drug development and privatizing the gains,” Sarpatwari said.

On paper, the institute has stricter pricing regulations than the NIH, which does not require that drugs developed with public money are accessible to the public. In California, companies have to submit plans for how uninsured patients will get medicine and are required to sell those medications to the state’s public health programs at a specified rate.

But in practice, the regulations have never really been tested.

Proposition 14 would add a new rule. It would take the money California makes from royalties and use it to help patients afford those treatments. It also benefits drug companies: Whatever revenue the state makes from these drugs will go back to the companies in the form of state-financed patient subsidies.

The measure also would establish a new working group (complete with 15 new, full-time staffers) that would help make clinical trials more affordable for patients by paying for lodging and transportation to the trials.

And it would increase the size of CIRM’s governing board from 29 to 35. This contradicts recommendations from the Institute of Medicine, which suggested shrinking the board to avoid conflicts of interest. Klein argues the extra board positions are necessary to represent different regions and areas of expertise.

Ultimately, California voters must weigh the possibility of new treatments against the cost of financing them with debt.

“We want to develop new therapies, and initiatives like what California is doing are well positioned to do that,” Sarpatwari said. “But at the end of the day, they’re only as good as people being able to access them affordably.”

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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Donella Pogue has trouble finding dentists in her rural area willing to accommodate her 21-year-old son, Justin, who is 6 feet, 8 inches tall, is on the autism spectrum and has difficulty sitting still when touched.

And this summer, he had a cavity and his face swelled. Pogue, of Bristol, New York, reached out to the Eastman Institute for Oral Health in Rochester, which offers teledentistry.

Dr. Adela Planerova looked into his mouth from 28 miles away as Pogue pointed her laptop’s camera into her son’s mouth. Planerova determined they did not need to make an emergency one-hour drive to her clinic. Instead, the dentist prescribed antibiotics and anti-inflammatory drugs, and weeks later he had surgery.

Teledentistry allows dental professionals like Planerova to remotely review records and diagnose patients over video. Some smile about its promise, seeing it as a way to become more efficient, to reach the one-third of U.S. adults who federal figures from 2017 estimate hadn’t seen a dentist in the previous year and to practice more safely during the pandemic.

But others see it as lesser-quality care that’s cheaper for dental professionals to provide, allowing them to make more money. At the same time, widespread adoption is hindered by issues such as spotty internet and insurance companies unwilling to reimburse for teledentistry procedures.

Dr. Christina Carter, an orthodontist in Morristown, New Jersey, said teledentistry has its place but shouldn’t replace time in the dental chair.

“It cannot be used for a full diagnosis because we need other tools, like X-rays,” she said. “We have all tried to see things on our phone or even on a Zoom call, and there is still just a different feel.”

Still, as the pandemic curbs in-person visits and reduces dentists’ revenue, more dentists are seeking guidance from Dr. Nathan Suter, a leading teledentistry advocate who owns the consulting company Access Teledentistry. Since March, he said, he’s done webinars for about 9,000 dental professionals, up from fewer than 1,000 in the three years before the pandemic.

Teledentistry providers trace the practice to 1994, when the Army launched a pilot program in which health care providers used an intra-oral camera to take photos of a patient’s mouth at a fort in Georgia and then sent them over the internet to a dental clinic at a fort 120 miles away.

Over the next two decades, dentists in upstate New York and the San Francisco Bay Area led teledentistry pilot programs for underserved children, some of whom were in preschool and already had cavities. The number of children who completed the prescribed dental treatment rose significantly.

Supporters say teledentistry can help reach the 43% of rural Americans who lack access to dental care. Medicaid and the Children’s Health Insurance Program will pay for many dental procedures for those enrolled in those programs, but only 38% of dentists participate in those programs, according to the American Dental Association. One reason: Medicaid typically reimburses at a significantly lower rate than those of private insurance plans.

Teledentistry could help dentists treat more patients and make more money a number of ways. If dentists remotely review data captured by hygienists, they can see more patients. Because video appointments save them time, dentists then have room for the people “who need the more expensive services” while also focusing on preventive care, said Kirill Zaydenman, vice president of innovation for DentaQuest, an administrator of dental insurance and oral health care provider.

But dentists have not widely adopted teledentistry — mainly because they’ve had difficulty getting insurers to pay for it, said Dr. Dorota Kopycka-Kedzierawski, a Rochester dentist. That’s partly because of insurers’ concerns about fraud. Dr. Paul Glassman, who started the Virtual Dental Home project to reach underserved preschool children in the Bay Area, considers those fears “completely incorrect.”

“If you want to bill for something you didn’t do,” he said, “you can do that just as easily in an in-person environment as you can using teledentistry.”

Since March, as the pandemic descended, most, if not all, private dental plans have been reimbursing for teledentistry, said Tom Meyers, vice president of public policy for America’s Health Insurance Plans, a trade organization. And all state Medicaid programs now reimburse for teledentistry in some form, Glassman said, though policies differ by state and some practices may not be covered in some places.

But teledentistry isn’t reimbursable under Medicare. (Most dentistry isn’t.) Another obstacle to widespread adoption: Some dentists and lawmakers connect teledentistry to companies offering at-home teeth aligners with little or no in-person contact with a dentist. Glassman has promoted teledentistry throughout the United States and reviewed proposed legislation or regulations in states such as Idaho, Massachusetts and Texas. He said he hears concerns from dentists about the lack of an in-person exam during which X-rays are taken. Such concerns are reflected in some legislation.

SmileDirectClub, an at-home teeth-aligner company, has argued in statehouse testimony that in-person care is not always needed. The company opposed a 2019 bill in Texas that aimed to improve access to dentistry in rural areas because it included a number of restrictions on teledentistry, including one that would have required an in-person dentist’s examination if a teledentistry provider treated that patient for more than 12 months.

SmileDirect’s attorney argued at a hearing the rule “could interrupt the course of a patient’s treatment.”

The measure failed.

Proponents argue teledentistry isn’t just about making more money. Pogue, the New York woman, said it was the best option for her son with special needs.

“He is really afraid of dentistry, so when he goes to see someone, he is really tense and really jumpy, so that’s another reason the teledentistry was nice was because he was in my bedroom doing it, so he was really comfortable,” said Pogue, 53, whose son is covered by Medicaid.

A few weeks later, Justin did have to have surgery, which went “perfect,” his mom said.

Some dentists say teledentistry faces particular stumbling blocks in rural areas. Dr. Mack Taylor, 36, a dentist who grew up in the small town of Dexter, Missouri, now practices in a health center just down the road. Twenty years ago, he said, Dexter had eight dentists. Now there are only three.

Technology is a major obstacle for local residents, many of whom lack reliable internet service. Taylor recently applied for a U.S. Department of Agriculture grant that would give him $26,500 to buy equipment so that, for example, a hygienist can take photos inside the mouths of nursing home residents and send them to Taylor to review.

“It’s not like medicine where you can discuss someone’s ailments and have a good idea what’s going on,” Taylor said. “Maybe all you can tell me is ‘I have a broken tooth,’ but I can’t physically see what’s going on and prescribe the right treatment.”

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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Just 15 days ahead of the election, Montana Lt. Gov. Mike Cooney laid out his ideas on how he’d handle the COVID-19 pandemic if elected governor. Details were few, but the Democrat’s plan became one of only a handful being offered by candidates in the 11 U.S. governor’s races about how they’ll approach what’s certain to be the dominant issue of their terms, should they win.

While much of the nation’s focus is on who will be president come January, voters who are deciding the next occupant of their governor’s mansion are also effectively choosing the next leader of their state’s COVID-19 response. The virus has made governors’ power highly visible to voters. As the states’ top executives, they decide whether to issue mask mandates, close businesses and order people to stay home.

All but two races for governor feature incumbents running for reelection: Montana’s Democratic Gov. Steve Bullock can’t run again because of term limits and Utah’s Republican Gov. Gary Herbert decided not to run for another term. In several other competitive races for governor this year, such as those in North Carolina and Missouri, opponents clash on the role of state mandates in slowing the virus. Still, COVID-19 often fades into the backdrop of many long-standing platforms or primarily comes up as candidates talk about the need to revive the economy.

Cooney’s proposal, released Monday, suggested using the National Guard to transport patients in extreme weather and subsidizing heating bills to help those quarantining at home. But other parts vaguely described how he would “develop a robust plan” to come.

His opponent, Republican U.S. Rep. Greg Gianforte, has acknowledged the health crisis but has focused primarily on the economy, saying the state has to “cure the economic pandemic” the virus caused.

Bryce Ward, a health economist with the University of Montana, said Cooney’s list was one of the first times he’s seen long-term planning for COVID-19 come up in what appears to be the nation’s tightest governor’s race. But, he added, neither Montana candidate has offered a concrete plan to deal with the dual crises that risk public health when people gather and businesses’ bottom lines when they don’t. Meanwhile, the state’s number of COVID-19 cases climbs and its economy suffers.

“Whoever wins, this is going to be the bulk of their term,” Ward said. “How are the candidates going to keep people afloat as long as they can? What are we doing in terms of planning for what we think our post-COVID world is going to look like?”

An October KFF poll found 29% of registered voters said the economy was the most important issue in choosing a president, while 18% said the coronavirus outbreak was their top issue. Republican voters were more likely to pick the economy, the survey found, and Democrats were more likely to pick the coronavirus. (KHN is an editorially independent program of KFF.)

“There are voters that feel that the government needs to lead, and there are voters that feel that the government is utilizing a pandemic to become too invasive,” said Capri Cafaro, a former Democratic Ohio state senator now teaching in American University’s public administration and policy department. “People are not necessarily making their decisions on ‘Did you do contact tracing? Are you going to slow the spread?’”

Among the incumbent governors seeking reelection this year, most of their campaigns’ focus on COVID-19 has been on how well they’ve responded to the crisis. Several pledge more of what they’ve been doing. “We’ll continue to follow the science and wear masks,” Delaware Democratic Gov. John Carney said in a recent debate.

Meanwhile, their challengers generally seek to cast the incumbents as mismanaging their states’ response and promising to undo what’s been done. Those who have put out actual plans to handle the pandemic are Democratic challengers to Republican governors, and their plans are similar to what Cooney released — some specific ideas and promises to fill in the gaps later.

In Missouri, Democratic challenger Nicole Galloway, who is the state auditor, made health care the center of her campaign and released a plan to respond to the virus with a statewide mask mandate and a limit on when public school classes can meet in person based on the community’s rate of infection.

Republican Gov. Mike Parson is the apparent front-runner in that state’s race. He has pledged to lead “the greatest economic comeback that we’ve ever seen in Missouri history.” The former Polk County sheriff also has focused on supporting law enforcement amid backlash against police brutality and racial injustice.

Curbing the coronavirus has taken a back seat to boosting the economy in Parson’s campaign. And, as governor, Parson has refused to issue a statewide mask mandate, despite a White House recommendation to do so. In late September, the governor and his wife tested positive for COVID-19. Parson has returned to work, which includes traveling across the state.

One of the more heated races is in North Carolina, where Democratic Gov. Roy Cooper is defending his seat against a challenge by his lieutenant governor, Republican Dan Forest. Forest sued Cooper this year to challenge the governor’s authority to impose COVID-related restrictions by executive order.

Forest dropped the lawsuit in August after a judge made a preliminary ruling against his case, then said on Twitter, “I did my part. If y’all want your freedoms back you’ll have to make your voices heard in November.”

Cooper’s campaign called the lawsuit “a desperate tactic to garner attention” for Forest’s political campaign. Since then, the governor has slowly eased COVID restrictions, updating an executive order to allow a limited number of people in bars, sporting events, movie theaters and amusement parks. Cooper is leading the race in recent polls.

Back in Montana, the pandemic surfaced in the gubernatorial campaign after health officials announced on Oct. 16 that a Helena concert, which Gianforte attended, was linked to several COVID-19 cases. More than 100 health professionals blasted him in an open letter for flouting local health restrictions, going maskless and making light of safety precautions at campaign events. Cooney called on him to suspend his campaign events until tested. Gianforte’s campaign has said he’s taking proper precautions and accused Cooney of politicizing a public health issue.

Cooney has said he’ll keep Montana’s COVID-19 response on the track he is helping set as lieutenant governor, with science guiding that work. Gianforte, who built a tech startup in Bozeman, has touted his business experience as proof he can lead Montana’s comeback. Both have said more needs to be learned about this virus and have pitched themselves as the one to steer the state’s economy through the crisis.

Ward, the University of Montana health economist, said the details are missing, such as how the winner will support businesses through the winter without federal aid. Or what the new governor would cut from the state budget if the economic crisis hits its coffers.

The state has a public mask mandate and a plan for reopening the economy with no apparent thresholds or timelines. The option for stricter rules has been left to county governments as the state sees its largest COVID surge yet.

Jeremy Johnson, a political scientist at Carroll College in Helena, said the initial lack of detailed pandemic policy in the state’s race could be attributed to both candidates trying to win over swing voters with safe themes. President Donald Trump won Montana in 2016 by 20 points, but the state has also had a Democratic governor for 16 years. While polls show Gianforte leading Cooney slightly, election handicappers Real Clear Politics and the Cook Political Report still consider the race a toss-up.

Yet as Election Day nears, the question of how to address the pandemic only looms larger. Montana’s case count is rising, adding to its total of more than 23,000 cases in the state of roughly 1 million.

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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“Lord, give me back my memory.”

For months, as Marilyn Walters has struggled to recover from COVID-19, she has repeated this prayer day and night.

Like other older adults who’ve become critically ill from the coronavirus, Walters, 65, describes what she calls “brain fog” — difficulty putting thoughts together, problems with concentration, the inability to remember what happened a short time before.

This sudden cognitive dysfunction is a common concern for seniors who’ve survived a serious bout of COVID-19.

“Many older patients are having trouble organizing themselves and planning what they need to do to get through the day,” said Dr. Zijian Chen, medical director of the Center for Post-COVID Care at Mount Sinai Health System in New York City. “They’re reporting that they’ve become more and more forgetful.”

Other challenges abound: overcoming muscle and nerve damage, improving breathing, adapting to new impairments, regaining strength and stamina, and coping with the emotional toll of unexpected illness.

Most seniors survive COVID-19 and will encounter these concerns to varying degrees. Even among the age group at greatest risk — people 85 and older — just 28% of those with confirmed cases end up dying, according to data from the Centers for Disease Control and Prevention. (Because of gaps in testing, the actual death rate may be lower.)

Walters, who lives in Indianapolis, spent almost three weeks in March and April heavily sedated, on a ventilator, fighting for her life in intensive care. Today, she said, “I still get tired real easy and I can’t breathe sometimes. If I’m walking sometimes my legs get wobbly and my arms get like jelly.”

“Emotionally, it’s been hard because I’ve always been able to do for myself, and I can’t do that as I like. I’ve been really nervous and jittery,” Walters said.

Younger adults who’ve survived a serious course of COVID-19 experience similar issues but older adults tend to have “more severe symptoms, and more limitations in terms of what they can do,” Chen said.

“Recovery will be on the order of months and years, not days or weeks,” said Dr. E. Wesley Ely, co-director of the Critical Illness, Brain Dysfunction and Survivorship Center at Vanderbilt University Medical Center. Most likely, he speculated, a year after fighting the disease at least half of the critically ill older patients will not have fully recovered.

The aftereffects of delirium — an acute, sudden change of consciousness and mental acuity — can complicate recovery from COVID-19. Seniors hospitalized for serious illness are susceptible to the often-unrecognized condition when they’re immobilized for a long time, isolated from family and friends, and given sedatives to ease agitation or narcotics for pain, among other contributing factors.

In older adults, delirium is associated with a heightened risk of losing independence, developing dementia and dying. It can manifest as acute confusion and agitation or as uncharacteristic unresponsiveness and lethargy.

“What we’re seeing with COVID-19 and older adults are rates of delirium in the 70% to 80% range,” said Dr. Babar Khan, associate director of Indiana University’s Center for Aging Research at the Regenstrief Institute, and one of Walters’ physicians.

Gordon Quinn, 77, a Chicago documentary filmmaker, believes he contracted COVID-19 at a conference in Australia in early March. At Northwestern Memorial Hospital, he was put on a ventilator twice in the ICU, for a total of nearly two weeks, and remembers having “a lot of hallucinations” — a symptom of delirium.

“I remember vividly believing I was in purgatory. I was paralyzed — I couldn’t move. I could hear snatches of TV — reruns of ‘Law & Order: Special Victims Unit’ — and I asked myself, ‘Is this my life for eternity?’” Quinn said.

Given the extent of delirium and mounting evidence of neurological damage from COVID-19, Khan said he expects to see “an increased prevalence of ICU-acquired cognitive impairment in older COVID patients.”

Ely agrees. “These patients will urgently need to work on recovery,” he said. Family members should insist on securing rehabilitation services — physical therapy, occupational therapy, speech therapy, cognitive rehabilitation — after the patient leaves the hospital and returns home, he advised.

“Even at my age, people can get incredible benefit from rehab,” said Quinn, who spent nearly two weeks at Chicago’s Shirley Ryan AbilityLab, a rehabilitation hospital, before returning home and getting several weeks of home-based therapy. Today, he’s able to walk nearly 2 miles and has returned to work, feeling almost back to normal.

James Talaganis, 72, of Indian Head Park, Illinois, also benefited from rehab at Shirley Ryan AbilityLab after spending nearly four months in various hospitals beginning in early May.

Talaganis had a complicated case of COVID-19: His kidneys failed and he was put on dialysis. He experienced cardiac arrest and was in a coma for almost 58 days while on a ventilator. He had intestinal bleeding, requiring multiple blood transfusions, and was found to have crystallization and fibrosis in his lungs.

When Talaganis began his rehab on Aug. 22, he said, “my whole body, my muscles were atrophied. I couldn’t get out of bed or go to the toilet. I was getting fed through a tube. I couldn’t eat solid foods.”

In early October, after getting hours of therapy each day, Talaganis was able to walk 660 feet in six minutes and eat whatever he wanted. “My recovery — it’s a miracle. Every day I feel better,” he said.

Unfortunately, rehabilitation needs for most older adults are often overlooked. Notably, a recent study found that one-third of critically ill older adults who survive a stay in the ICU did not receive rehab services at home after hospital discharge.

“Seniors who live in more rural areas or outside bigger cities where major hospital systems are providing cutting-edge services are at significant risk of losing out on this potentially restorative care,” said Dr. Sean Smith, an associate professor of physical medicine and rehabilitation at the University of Michigan.

Sometimes what’s most needed for recovery from critical illness is human connection. That was true for Tom and Virginia Stevens of Nashville, Tennessee, in their late 80s, who were both hospitalized with COVID-19 in early August.

Ely, one of their physicians, found them in separate hospital rooms, frightened and miserable. “I’m worried about my husband,” he said Virginia told him. “Where am I? What is happening? Where is my wife?” the doctor said Tom asked, before crying out, “I have to get out of here.”

Ely and another physician taking care of the couple agreed. Being isolated from each other was dangerous for this couple, married for 66 years. They needed to be put in a room together.

When the doctor walked into their new room the next day, he said, “it was a night-and-day difference.” The couple was sipping coffee, eating and laughing on beds that had been pushed together.

“They both got better from that point on. I know that was because of the loving touch, being together,” Ely said.

That doesn’t mean recovery has been easy. Virginia and Tom still struggle with confusion, fatigue, weakness and anxiety after their two-week stay in the hospital, followed by two weeks in inpatient rehabilitation. Now, they’re in a new assisted living residence, which is allowing outdoor visits with their family.

“Doctors have told us it will take a long time and they may never get back to where they were before COVID,” said their daughter, Karen Kreager, also of Nashville. “But that’s OK. I’m just so grateful that they came through this and we get to spend more time with them.”

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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When Terry Mutter woke up with a headache and sore muscles on a recent Wednesday, the competitive weightlifter chalked it up to a hard workout.

By that evening, though, he had a fever of 101 degrees and was clearly ill. “I felt like I had been hit by a truck,” recalled Mutter, who lives near Seattle.

The next day he was diagnosed with COVID-19. By Saturday, the 58-year-old was enrolled in a clinical trial for the same antibody cocktail that President Donald Trump claimed was responsible for his coronavirus “cure.”

“I had heard a little bit about it because of the news,” said Mutter, who joined the study by drugmaker Regeneron to test whether its combination of two man-made antibodies can neutralize the deadly virus. “I think they probably treated him with everything they had.”

Mutter learned about the study from his sister-in-law, who works at Seattle’s Fred Hutchinson Cancer Research Center, one of dozens of trial sites nationwide. He is among hundreds of thousands of Americans — including the president — who’ve taken a chance on experimental therapies to treat or prevent COVID-19.

But with nearly 8 million people in the U.S. infected with the coronavirus and more than 217,000 deaths attributed to COVID, many patients are unaware of such options or unable to access them. Others remain wary of unproven treatments that can range from drugs to vaccines.

“Honestly, I don’t know whether I would have gotten a call if I hadn’t known somebody who said, ‘Hey, here’s this study,’” said Mutter, a retired executive with Boeing Co.

The website clinicaltrials.gov, which tracks such research, reports more than 3,600 studies involving COVID-19 or SARS-CoV-2, the virus that causes the disease. More than 430,000 people have volunteered for such studies through the COVID-19 Prevention Network. Thousands of others have received therapies, like the antiviral drug remdesivir, under federal emergency authorizations.

Faced with a dire COVID diagnosis, how do patients or their families know whether they can — or should — aggressively seek out such treatments? Conversely, how can they decide whether to refuse them if they’re offered?

Such medical decisions are never easy — and they’re even harder during a pandemic, said Annette Totten, an associate professor of medical informatics and clinical epidemiology at Oregon Health & Science University.

“The challenge is the evidence is not good because everything with COVID is new,” said Totten, who specializes in medical decision-making. “I think it’s hard to cut through all the noise.”

Consumers have been understandably whipsawed by conflicting information about potential COVID treatments from political leaders, including Trump, and the scientific community. The antimalarial drug hydroxychloroquine, touted by the president, received emergency authorization from the federal Food and Drug Administration, only to have the decision revoked several weeks later out of concern it could cause harm.

Convalescent plasma, which uses blood products from people recovered from COVID-19 to treat those who are still ill, was given to more than 100,000 patients in an expanded-access program and made widely available through another emergency authorization — even though scientists remain uncertain of its benefits.

Regeneron and the pharmaceutical firm Eli Lilly and Co. have both requested emergency use authorization for their monoclonal antibody therapies, even as scientists say such approval could jeopardize enrollment in the randomized controlled trials that will prove whether or how well they work. So far, about 2,500 people have enrolled in the Regeneron trials, with about 2,000 of them receiving the therapy, a company spokesperson said. Others have received the treatment through so-called compassionate use programs, though the company wouldn’t say how many.

Last week, the National Institutes of Health paused the Lilly antibody trial after an independent monitoring board raised safety concerns.

“With all of the information swirling around in the media, it’s hard for patients to make good decisions — and for doctors to make those decisions,” said Dr. Benjamin Rome, a general internist and health policy researcher at Harvard Medical School’s Portal program. “You shouldn’t expect that what you’ve heard about on the news is the right treatment for you.”

Even so, people facing COVID shouldn’t be afraid to question whether treatment options are available to them, Rome said. “As a doctor, I never mind when patients ask,” he said.

Patients and families should understand what the implications of those treatments might be, Totten advised. Early phase 1 clinical trials focus largely on safety, while larger phase 2 and phase 3 trials determine efficacy. Any experimental treatment raises the possibility of serious side effects.

Ideally, health care providers would provide such information about treatments and risks unprompted. But during a pandemic, especially in a high-stress environment, they might not, Totten noted.

“It’s important to be sort of insistent,” she said. “If you ask a question, you have to ask it again. Sometimes you have to be willing to be a little pushy,” she said.

Patients and families should take notes or record conversations for later review. They should ask about financial compensation for participation. Many patients in COVID-19 trials are paid modest amounts for their time and travel.

And they should think about how any treatment fits into their larger system of values and goals, said Angie Fagerlin, a professor and the chair of the population health sciences department at the University of Utah.

“What are the pros and what are the cons?” Fagerlin said. “Where would your decision regret be: Not doing something and getting sicker? Or doing something and having a really negative reaction?”

One consideration may be the benefit to the wider society, not just yourself, she said. For Mutter, helping advance science was a big reason he agreed to enroll in the Regeneron trial.

“The main thing that made me interested in it was in order for therapeutics to move forward, they need people,” he said. “At a time when there’s so much we can’t control, this would be a way to come up with some kind of a solution.”

That decision led him to Fred Hutch, which is collaborating on two Regeneron trials, one for prevention of COVID-19 and one for treatment of the disease.

“It was a six-hour visit,” he said. “It’s two hours to get the infusion. It’s a very slow IV drip.”

Mutter was the second person enrolled in the treatment trial at Fred Hutch, said Dr. Shelly Karuna, a co-principal investigator. The study is testing high and low doses of the monoclonal antibody cocktail against a placebo.

“I am struck by the profound altruism of the people we are screening,” she said.

Mutter isn’t sure how he contracted COVID-19. He and his family have been careful about masks and social distancing — and critical of others who weren’t.

“The irony now is that we’re the ones who got sick,” said Mutter, whose wife, Gina Mutter, 54, is also ill.

Mutter knows he has a 1-in-3 chance that he got a placebo rather than one of two active treatment dosages, but he said he was willing to take that chance. His wife didn’t enroll in the trial.

“I said, there’s some risks involved. We’re taking one for the team here. I don’t think we both need to do that,” he said.

So far, Mutter has struggled with a persistent cough and lingering fatigue. He can’t tell if his infusion has been helpful, never mind whether it’s a cure.

“Just no way of telling if I got the antibodies or not,” he said. “Did I get them and that kept me out of disaster, or did I get the placebo and my own immune system did its job?”

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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Ever since Mercy Hospital went “corporate,” things just haven’t been the same — that’s what lots of locals in Fort Scott, Kansas, said when the Mercy health system shuttered the only hospital in town.

It’s been years since Catholic nuns led Mercy Hospital Fort Scott, but town historian Fred Campbell is wistful for his boyhood in the 1940s when sisters in habits walked the hallways.

“Well, I had never, ever been in a hospital. And here came these ladies in flowing robes and white bands around their faces. And I was scared to death. But it wasn’t long ’til I found that, first thing I know, they had some iced Coca-Cola. I still remember them putting their hand on my head to see if I had a fever.”

For more than 100 years, Mercy Hospital — and the nuns who started it all — cared for local people. But in recent years, Fort Scott’s economy and the hospital’s finances faltered. Campbell hoped both could survive.

“Mercy Corporation, can you stay with us longer?” he wondered.

In Chapter 4 of Season One: No Mercy, podcast host Sarah Jane Tribble carries that question to Sister Mary Roch Rocklage, the powerhouse who consolidated all the Mercy hospitals in the Midwest.

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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