Israel Shippy doesn't remember much about having COVID-19 — or the unusual auto-immune disease it triggered — other than being groggy and uncomfortable for a bunch of days. He's a 5-year-old, and would much rather talk about cartoons, or the ideas for inventions that constantly pop into his head.
"Hold your horses, I think I know what I'm gonna make," he said, holding up a finger in the middle of a conversation. "I'm gonna make something that lights up and attaches to things with glue, so if you don't have a flashlight, you can just use it!"
In New York, at least 237 kids, including Israel, appear to have Multisystem Inflammatory Syndrome in Children, or MIS-C. And state officials continue to track the syndrome, but the Centers for Disease Control and Prevention did not respond to repeated requests for information on how many children nationwide have been diagnosed so far with MIS-C.
A study published June 29 in the New England Journal of Medicine reported on 186 patients in 26 states who had been diagnosed with MIS-C. A researcher writing in the same issue added reports from other countries, findingthat about 1,000 children worldwide have been diagnosed with MIS-C.
Tracking the Long-Term Health Effects of MIS-C
Israel is friendly and energetic, but he's also really good at sitting still. During a recent checkup at Children's Hospital at Montefiore, in the Bronx, he had no complaints about all the stickers and wires a health aide attached to him for an EKG. And when Dr. Marc Foca, an infectious disease specialist, came by to listen to his heart and lungs, and prod his abdomen, Israel barely seemed to notice.
There were still some tests pending, but overall, Foca said, "Israel looks like a totally healthy 5-year-old."
"Stay safe!" Israel called out, as Foca left. It's his new signoff, instead of goodbye. His mother, Janelle Moholland, explained Israel came up with it himself.
And she's also hoping that after a harrowing couple of weeks in early May, Israel himself will "stay safe."
That's why they've been returning to Montefiore for the periodic checkups, even though Israel seems to have recovered fully from both COVID-19 and MIS-C.
MIS-C is relatively rare, and it apparently responds well to treatment, but it is new enough — and mysterious enough — that doctors here want to make sure the children who recover don't experience any related health complications in the future.
"We've seen these kids get really sick, and get better and recover and go home, yet we don't know what the long-term outcomes are," said Dr. Nadine Choueiter, a pediatric cardiologist at Montefiore. "So that's why we will be seeing them."
When Israel first got sick at the end of April, his illness didn't exactly look like COVID-19. He had persistent high fevers, with his temperature reaching 104 degrees — but no problems breathing. He wasn't eating. He was barely drinking. He wasn't using the bathroom. He had abdominal pains. His eyes were red.
They went to the emergency room a couple of times and visited an urgent care center, but the doctors sent them home without testing him for the coronavirus. Moholland, 29, said she felt powerless.
"There was nothing I could do but make him comfortable," she said. "I literally had to just trust in a higher power and just hope that He would come through for us. It taught me a lot about patience and faith."
As Israel grew sicker, and they still had no answers, Moholland grew frustrated. "I wish his pediatrician and [the emergency room and urgent care staff] had done what they were supposed to do and given him a test" when Israel first got sick, Moholland said. "What harm would it have done? He suffered for about 10 or 11 days that could have been avoided."
In a later interview, she talked with NPR about how COVID-19 has disproportionately affected the African American community, due to a combination of underlying health conditions and lack of access to good healthcare. She said she felt she, too, had fallen victim to those disparities.
"It affects me, personally, because I am African American, but you just never know," she said. "It's hard. We're living in uncertain times — very uncertain times."
Finally, Children's Hospital at Montefiore admitted Israel — and the test she'd been trying to get for days confirmed he had the virus.
"I was literally in tears, like begging them not to discharge me because I knew he was not fine," she recalled.
Israel was in shock, and by the time he got to the hospital, doctors were on the lookout for MIS-C, so they recognized his symptoms — which were distinct from most people with COVID-19.
Doctors gave Israel fluids and intravenous immune globulin, a substance obtained from donated human plasma, which is used to treat deficiencies in the immune system.
Immune globulin has been effective in children like Israel because MIS-C appears to be caused by an immune overreaction to the initial coronavirus infection, according to Choueiter, the Montefiore pediatric cardiologist.
"The immune system starts attacking the body itself, including the arteries of the heart," she said.
In some MIS-C cases — though not Israel's — the attack occurs in the coronary arteries, inflaming and dilating them. That also happens in a different syndrome affecting children, Kawasaki disease. About 5% of Kawasaki patients experience aneurysms — which can fatally rupture blood vessels — after the initial condition subsides.
Choueiter and her colleagues want to make sure MIS-C patients don't face similar risks. So far, they're cautiously optimistic.
"We have not seen any new decrease in heart function or any new coronary artery dilations," she said. "When we check their blood, their inflammatory markers are back to normal. For the parents, the child is back to baseline, and it's as if this illness is a nightmare that's long gone."
For a Pennsylvania Teen, the MIS-C Diagnosis Came Much Later
Not every child who develops MIS-C tests positive for the coronavirus, though many will test positive for antibodies to the coronavirus, indicating they had been infected previously. That was the case with Andrew Lis, a boy from Pennsylvania who was the first MIS-C patient seen at the Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware.
Andrew had been a healthy 14-year-old before he got sick. He and his twin brother love sports and video games. He said the first symptom was a bad headache. He developed a fever the next day, then constipation and intense stomach pain.
"It was terrible," Andrew said. "It was unbearable. I couldn't really move a lot."
His mother, Ingrid Lis, said they were thinking appendicitis, not coronavirus, at first. In fact, she hesitated to take Andrew to the hospital, for fear of exposing him to the virus. But after Andrew stopped eating because of his headache and stomach discomfort, "I knew I couldn't keep him home anymore," Lis said.
Andrew was admitted to the hospital April 12, but that was before reports of the mysterious syndrome had started trickling out of Europe.
Over about five days in the pediatric intensive care unit, Andrew's condition deteriorated rapidly, as doctors struggled to figure out what was wrong. Puzzled, they tried treatments for scarlet fever, strep throat and toxic shock syndrome. Andrew's body broke out in rashes, then his heart began failing and he was put on a ventilator. Andrew's father, Ed Lis, said doctors told the family to brace for the worst: "We've got a healthy kid who a few days ago was just having these sort of strange symptoms. And now they're telling us that we could lose him."
Though Andrew's symptoms were atypical for Kawasaki disease, doctors decided to give him the standard treatment for that condition — administering intravenous immune globulin, the same treatment Israel Shippy received.
"Within the 24 hours of the infusion, he was a different person," Ingrid Lis said. Andrew was removed from the ventilator, and his appetite eventually returned. "That's when we knew that we had turned that corner."
It wasn't until after Andrew's discharge that his doctors learned about MIS-C from colleagues in Europe. They recommended the whole family be tested for antibodies to the coronavirus. Although Andrew tested positive, the rest of the family — both parents, Andrew's twin brother and two older siblings — all tested negative. Andrew's mother is still not sure how he was exposed since the family had been observing a strict lockdown since mid-March. Both she and her husband were working remotely from home, and she says they all wore masks and were conscientious about hand-washing when they ventured out for groceries. She thinks Andrew must have been exposed at least a month before his illness began.
And she's puzzled why the rest of her close-knit family wasn't infected as well. "We are a Latino family," Ingrid Lis said. "We are very used to being together, clustering in the same room." Even when Andrew was sick, she says, all six of them huddled in his bedroom to comfort him.
Meanwhile, Andrew has made a quick recovery. Not long after his discharge in April, he turned 15 and resumed an exercise routine involving running, pushups and situps. A few weeks later, an echocardiogram showed Andrew's heart was "perfect," Ed Lis said. Still, doctors have asked Andrew to follow up with a cardiologist every three months.
An Eye on the Long-Term Effects
The medical team at Montefiore is tracking the 40 children they have already treated and discharged. With kids showing few symptoms in the immediate aftermath, Chouetier hopes the long-term trajectory after MIS-C will be similar to what happens after Kawasaki disease.
"Usually children who have had coronary artery dilations [from Kawasaki disease] that have resolved within the first six weeks of the illness do well long-term," said Choueiter, who runs the Kawasaki disease program at Montefiore.
The Montefiore team is asking patients affected by MIS-C to return for a checkup one week after discharge, then after one month, three months, six months and a year. They will be evaluated by pediatric cardiologists, hematologists, rheumatologists and infectious disease specialists.
Montefiore and other children's hospitals around the country are sharing information. Choueiter wants to establish an even longer-term monitoring program for MIS-C, comparable to registries that exist for other diseases.
Moholland is glad the hospital is being vigilant.
"The uncertainty of not knowing whether it could come back in his future is a little unsettling," she said. "But I am hopeful."
This story is part of a partnership that includes WNYC, NPR and Kaiser Health News.
More than four months into the coronavirus pandemic, how close are the U.S. and the world to a safe and effective vaccine? Scientists say they see steady progress and are expressing cautious optimism that a vaccine could be ready by spring.
As of early July, roughly 160 vaccine projects were underway worldwide, according to the World Health Organization.
Generally, a vaccine trial has several phases. In an initial phase, the vaccine is given to 20 to 100 healthy volunteers. The focus in this phase is to make sure the vaccine is safe, and to note any side effects.
In the second phase, there are hundreds of volunteers. In addition to monitoring safety, researchers try to determine whether shots produce an immune-system response.
The third phase involves thousands of patients. This phase continues the goals of the first two, but adds a focus on how effective the vaccine is in protecting people exposed to the pathogen, in this case the coronavirus. This phase also collects data on more unusual negative side effects.
In ordinary circumstances, these phases take years to complete. But for the coronavirus, the timeline is being shortened. This has spurred more public-private partnerships and significantly increased funding.
Here's a rundown of the vaccine candidates that are furthest along in the clinical phases:
The three vaccine candidates that are furthest along are in phase 3.
One is being developed by researchers at Oxford University in the U.K. It uses a weakened version of a virus that causes common colds in chimpanzees. Researchers then added proteins, known as antigens, from the novel coronavirus, in the hope that these could prime the human immune system to fight the virus once it encounters it.
Another candidate in a phase 3 trial is being developed in China. It uses a killed, and thus safe, version of the novel coronavirus to spur an immune reaction.
And on July 15, the biotech company Moderna, which is partnering with the National Institutes of Health, announced that it would be moving to phase 3 within two weeks.
Two others have made it as far as phase 2, while eight others are finishing their phase 1 trials while also beginning phase 2 trials.
These candidates are being developed by a mix of corporations and institutions in several countries. These efforts seek to leverage a range of technologies.
One uses RNA material that provides the instructions for a body to produce the needed antigens itself. This is a relatively untested approach to vaccination, but if it works, it has aspects that could make it easier to manufacture. Another approach is similar, but uses DNA instead of RNA.
One U.S. biotech firm, Novavax, is receiving federal funding to produce a vaccine that uses a lab-made protein to inspire an immune response.
Beyond these, another 10 vaccine candidates are in phase 1 clinical trials, while 140 haven't reached the clinical phase yet.
Having so many potential vaccines this far along is impressive, experts say, given the short time scientists have known about the novel coronavirus.
"Overall, the pace of development and advancement to phase 3 trials is impressive," said Matthew B. Laurens, associate professor at the University of Maryland School of Medicine's Center for Vaccine Development and Global Health. "The public-private partnerships have been highly successful and are achieving goals for rapid vaccine development."
In addition, the fact that several types of vaccine approaches are being tested means we aren't putting all of our eggs in one basket.
"We will need several candidates should any one of these experience difficulties in manufacturing or show a safety signal when implemented in larger numbers of people," Laurens said.
Meanwhile, at a time of rising public skepticism of government and vaccines, the Food and Drug Administration recently released additional guidelines on vaccine effectiveness. The new guidance requires vaccines to prevent or decrease the severity of the disease at least 50% of the time if they are to win the agency's approval.
The FDA guidelines "reaffirmed the very rigorous FDA process for approving any vaccine. That gives a great deal of reassurance that this was going to be handled by the book," said William Schaffner, a professor of preventive medicine and infectious diseases at Vanderbilt University Medical Center. "The more we talk about doing things fast, the more the public thinks, 'They're probably cutting corners.'"
How fast will we have access to a workable vaccine?
In early April, Kathleen M. Neuzil, director of the University of Maryland's vaccine center, toldPolitiFactthat if all went well, there might be five or six vaccines in trials within six months. Now, 3 1/2 months later, there are two to three times that number.
Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, and other officials have remained consistent in their estimation of the timeline: 12 to 18 months from the start of the pandemic, or roughly the late spring of 2021.
Schaffner told PolitiFact that he continues to see the first quarter of 2021 as a reasonable target. "I think that's where the needle is pointing," he said.
It remains to be seen how fast vaccines can be manufactured and distributed once approved for general use. Officials are also grappling with which Americans will get access first. So it's unclear how long a person would have to wait to get vaccinated.
Laurens said he is not overly concerned about the distribution, because that is something that officials have long experience with. "Well-established programs exist for vaccine distribution, including for seasonal vaccination of large numbers of individuals," he said.
Another hopeful sign, Schaffner said, is that the coronavirus itself seems to be relatively stable. There had been concern that the novel coronavirus, like many other viruses, is mutating over time. If the virus changes enough, that could become a problem that bedevils vaccine researchers.
But so far, that hasn't happened. Even if evidence emerges that mutations are making the virus more transmissible, or that a new variant is making people sicker, that shouldn't affect the vaccine process. "The central core of the virus would remain the same," Schaffner said.
During the past month, there has been relatively little news about how much progress is being made on particular vaccines. Schaffner is not worried by the relative quiet.
"In a vaccine trial, if there's an adverse safety finding, the guillotine comes down and that trial is stopped," he said. "So quiet is good, because we'd know if something bad happens."
In the midst of the COVID-19 epidemic, contact tracing is downright buzzy, and not always in a good way.
Contact tracing is the public health practice of informing people when they've been exposed to a contagious disease. As it has become more widely employed across the country, it has also become mired in modern political polarization and conspiracy theories.
Misinformation abounds, from tales that people who talk to contact tracers will be sent to nonexistent "FEMA camps" — a rumor so prevalent that health officials in Washington state had to put out astatement in May debunking it — to elaborate theories that the efforts are somehow part of a plot by global elites, such as the Clinton Foundation, Bill Gates or George Soros.
At the very least, such misinformation could hinder efforts to contain the virus, and at worst has sparked threats against tracers, say some observers, including the Institute for Strategic Dialogue (ISD), a London-based organization that studies polarization.
The dynamic, ISD notes in a June report, "is being generated both by individual social media users and by key influencers in conspiratorial communities" and plays on fears that Big Brother is watching us.
According to that report, social media posts, mainly videos, have been associated with "widespread sharing of petitions and other efforts to galvanise political action against contact tracing." The videos, steeped in disinformation and conspiracy think — whether alleging tracers' ties to the deep state or casting them as part of a Democratic effort to interfere in the 2020 election — "are receiving more than 300,000 views each on YouTube and are being shared tens of thousands of times across public Facebook pages and groups."
Of course, the real story behind tracing is nothing like these colorful conspiracy theories. It's an age-old infection control strategy, and it's a bit tedious, actually.
"We've been doing it in public health for decades," said Marcus Plescia, chief medical officer for the Association of State and Territorial Health Officials.
Part old-fashioned shoe-leather detective work, part social work, the goal is to interrupt the spread of the illness by reaching out to people who test positive — and people they have been in close contact with — and provide needed support for them to isolate. It has to be done quickly, and it takes a lot of people. Recent case count surges in some parts of the country are making the task more difficult.
So let's take a look at what it is and isn't.
What's the Process?
When a person tests positive for certain communicable diseases, health care providers must report their contact information to public health departments. Contact tracers then try to reach out quickly, generally by phone.
The tracer will ask for the patient's address. Some social media sites have decried this as nefarious, but it's not. The tracer does not want to provide private medical information — "Mr. Smith, I see you tested positive for COVID" — to the wrong person. Those contacted should also feel free to confirm it really is the public health department calling, experts note, as there have been reports of fraudulent calls.
During the initial call, the tracer makes sure the patient is OK and understands the disease and what to expect. Ideally, the contract tracer builds a relationship with the patient. Some can link the patient with local resources or services, such as food delivery or needed medical supplies, that can make it easier to stay isolated until they have recovered from the virus.
What's a Close Contact?
Contact tracers ask where the infected person traveled and with whom they came in close contact — generally defined as being within 6 feet for 15 minutes or more — from about two days before they started showing symptoms until they isolated themselves.
That does not include such things as simply passing people on the street or opening the door to pick up a package dropped off by a FedEx driver.
Providing the information is voluntary, but it is the only way the programs will work. Most patients happily comply, but a few are reluctant, said Plescia.
"That was a little surprising," he said. "You would think if you might cause another person to become ill, you would have an interest in that person being notified. But some worry they are snitching on other people."
Tracers do not disclose the name of the infected person. Contacts simply "receive a call saying 'You have had a significant exposure,'" said Crystal Watson, senior scholar at the Johns Hopkins Center for Health Security and co-author of a report on contact tracing.
To assist with tracing, some restaurants, stores, salons and other businesses are keeping daily logs of customers. Some voices on social media have raised concerns about those logs, saying they are intrusive and suggest that Big Brother is watching. Their purpose, though, is to make it easier for health officials to notify other employees and patrons in the event that someone tests positive.
Close contacts are urged to quarantine for 14 days, check their temperature regularly and avoid contact with other household members, if possible.
For each infected patient, tracers need to contact an average of 10 other people, said Watson — noting, however, that the number could be far higher. "If contact tracing is done in a place where there's a big epidemic and no one is under social distancing restrictions, you'll have to contact more," she said.
Speed is of the essence in finding close contacts. Infected people start showing symptoms within two to seven days of exposure — although it can take up to 14 — and they may be contagious before symptoms appear.
Who Asks All of These Questions?
In the early days of the COVID pandemic in the U.S., tracing was limited because testing for the virus was also limited. The two really go together. That meant the nation used the other tool at its disposal, the blunt instrument of stay-at-home orders. Now, with testing more available, and with many states in the fits and starts of reopening, the more targeted effort of contact tracing becomes important.
Used effectively, it can sharply slow outbreaks, as seen in countriesthat have employed comprehensive tracing programs, such as Japan, New Zealand and China.
So far, though, the U.S. has a more limited effort, and it varies by state.
An estimated 37,000 contact tracers are now employed by public health departments nationwide, triple the number just a few weeks ago, according to an NPR state survey and tracking effort. Still, those numbers are far below estimates of what many say is necessary. Indeed, Watson and other Johns Hopkins researchers say the U.S. needs to add a minimum of 100,000 contract tracers.
Can They Force Me Into Quarantine?
Although health officials do have the authority to isolate people who pose a danger to others, that power is almost never used.
"Mandatory quarantine hasn't really been used since the days of smallpox in this country, although the president used it in the beginning of the pandemic for some people repatriating back to the county," said Watson.
Public health officials avoid such aggressive tactics because they don't want to discourage people from getting tested. As for hauling people away from their homes by force, that also doesn't happen here, although it does in some authoritarian countries. Instead, a number of cities and regions have set up special hotels or other facilities where infected or exposed people who live in homes where they can't isolate themselves from other family members can voluntarily spend their convalescence.
Is It Working?
It has certainly worked in other countries, said Howard Koh, professor at the Harvard T.H. Chan School of Public Health and former assistant secretary for health in the Obama administration.
"Italy, Spain, China, Taiwan, Hong Kong and New Zealand have all gotten to the other side of the curve," said Koh. "When they have outbreaks, they are relatively small and they jump on them right away."
One difference, he said, is those places have a national strategy.
"In our country, we have a 50-state strategy, a patchwork response including contact tracing, with some states having embraced it and some have barely started."
Massachusetts and New York have reported success with tracing, said Watson.
But there are many areas of the country, especially the Sun Belt, where cases are spiking, complicating efforts to control the virus. With more interest in getting tested, turnaround time for results grows. And large numbers of new cases mean contact tracers have far more people to track down, making it challenging to do so in the short time frame needed to be effective.
"I'm discouraged that a lot of the states where we are seeing a big surge right now have not put a lot of effort into developing their contact tracing workforce," Watson said, echoing Koh's call for a national plan. "We need an initiative by the federal government focused on contract tracing."
The debate reflects a deepening schism between the major political parties, with Democrats focused on protecting lives and Republicans focused on protecting livelihoods.
Congressional leaders are squaring off over the next pandemic relief bill in a debate over whom Congress should step up to protect: front-line workers seeking more safeguards from the ravages of COVID-19 or beleaguered employers seeking relief from lawsuits.
Democrats want to enact an emergency standard meant to bolster access to protective gear for health care and other workers and to bar employers from retaliating against them for airing safety concerns.
Republicans seek immunity for employers from lawsuits related to the pandemic, an effort they say would give businesses the confidence to return to normal. The Senate is scheduled to reconvene later this month.
The debate reflects a deepening schism between the major political parties, with Democrats focused on protecting lives and Republicans focused on protecting livelihoods.
Democratic House Speaker Nancy Pelosi expressed frustration over efforts to pass an emergency worker-protection standard, which keeps running into GOP resistance.
"They're saying 'Let's give immunity — no liability — for employers,'" Pelosi said. "We're saying the best protection for the employer is to protect the workers."
Nearly 98,000 health care workers have contracted the novel coronavirus, according to Centers for Disease Control and Prevention data that the agency acknowledges is an undercount. KHN and The Guardian have identified more than 780 who have died and have told the personal stories of 139 of them.
In May, the House passed a $3 trillion relief bill that would require the Occupational Safety and Health Administration to put in place an emergency standard that would call on employers to create a plan based, in part, on CDC or OSHA guidance to protect workers from COVID-19.
It would cover health care workers and also those "at occupational risk of exposure to COVID19." The measure would allow workers to bring protective gear "if not provided by the employer." Similar rules in place in California health care workers have come under fire for offering little added protection.
In action, the new measure would allow OSHA inspectors to request to review an employers' plan and hold them accountable for following it, said David Michaels, former U.S. assistant secretary of Labor and OSHA administrator, who has called for such a standard. Federal guidance is currently optional, not required.
"Many employers want to be law-abiding," Michaels said, "and they know they risk enforcement and possibly a monetary fine if they don't attempt to do this."
Top Democrats, including presumptive presidential nominee Joe Biden, have called for better worker protections, while GOP leaders have called for stronger employer protections.
Senate Majority Leader Mitch McConnell has insisted that the next pandemic relief bill include immunity for employers against coronavirus-related lawsuits.
"If we do another bill, it will have liability protections in it for doctors, for hospitals, for nurses, for businesses, for universities, for colleges," McConnell said July 1. "Nobody knew how to deal with the coronavirus," he said, and unless they've committed gross negligence or intentional harm, those parties should be protected from an "epidemic of lawsuits."
He has proposed a five-year period of immunity from December 2019 through 2024. (McConnell's office declined to comment for this story.)
Such a measure could derail lawsuits already filed by grieving family members such as Florence Dotson, the mother of 51-year-old certified nursing assistant Maurice Dotson, who died in April. Her son cared for nursing home residents with COVID-19 in Austin, Texas, and did not have proper personal protective equipment (PPE), her suit alleges. He later died of complications from the virus.
Another lawsuit alleges that an anonymous New York nurse requested but was denied proper PPE when she was assigned to care for a patient in intensive care with COVID-19 symptoms but who was tested for the virus only after death. The nurse, who contracted COVID-19 shortly after, is seeking $1 million in damages.
U.S. workers in every industry have filed more than 13,300 COVID-related complaints with OSHA, records show, demonstrating widespread concern over their lack of protection at work. Twenty-three complaints reference a fear of retaliation, including among hospital workers who say they were pressured to work while sick.
The agency has closed investigations into those complaints but is investigating 6,600 more open complaints. OSHA has so far issued one citation against an employer, a spokesperson confirmed.
Employers are also struggling, evidenced by layoffs and an 11% unemployment rate, which the Congressional Budget Office projects will hit 16% in the coming weeks.
States have taken some matters in their own hands during months of federal inaction. At least 25 states have created some degree of legal immunity for doctors or facilities, through new laws or executive orders, according to the National Conference of State Legislatures.
Officials in Virginia and Oregon have taken steps to enact their own heightened worker-protection rules related to the virus.
The effort to pass an OSHA rule to protect workers from infectious diseases dates to 2010, when regulators saw the need to better protect health care workers after the H1N1 flu pandemic.
Michaels, the former OSHA director under President Barack Obama, said the effort has stalled out under the Trump administration. Trump administration OSHA officials have defended their track record, saying adequate rules are in place to protect workers.
But a similar push succeeded in California in 2009. State officials passed a plan requiring health care employers to create a plan to protect health care workers from airborne viruses.
The California measure went further, requiring hospitals and nursing homes to stockpile or be prepared to supply workers with an N95 respirator — or an even more protective device — if treating patients with a virus like COVID-19.
Workplace safety experts in California, though, said it hasn't worked as intended.
As more than 17,600 health care workers have become sick and 99 have died in the state, it's become apparent that health care employers did not have plans in place, said Stephen Knight, executive director of Worksafe, a nonprofit focused on workplace safety.
"This was just a massive missed opportunity and one that cost people their lives," Knight said. "People are just dying … with frightening regularity."
California nurses who died after caring for COVID patients without an N95 respirator include Sandra Oldfield, 52, who wore a less-protective surgical mask while caring for a patient who wasn't initially thought to have the virus.
A complaint to OSHA about a lack of N95 respirators that preceded her death put her hospital, Kaiser Permanente Fresno Medical Center, in violation of the state's standard, the state labor department confirmed.
However, alternative guidance is now in place because of global PPE shortages, according to the California Department of Industrial Relations. Kaiser Permanente, which is not affiliated with KHN, confirmed that the patient was not initially thought to have COVID-19 and that the company has followed state, local and CDC guidance on patient screening and use of PPE.
Hospital officials, who have come out against a national OSHA standard, said the plans that were in place did not account for the scope of the current pandemic and global supply chain breakdown.
"It is not for a lack of caring or trying to keep our workers safe," said Gail Blanchard-Saiger, vice president for labor and employment with the California Hospital Association.
One of the most popular features of the Affordable Care Act is its guarantee of insurance coverage — at no greater cost — for people with preexisting health conditions.
Thus, even as the Trump administration argues before the Supreme Court that the entire Affordable Care Act should be declared invalid, the president and his administration officials maintain that regardless of what happens to the ACA, they will protect people who have had health problems in the past.
Speaking to a "virtual health summit" sponsored by the political newspaper The Hill, Health and Human Services Secretary Alex Azar answered a question about the case, Texas v. Azar, by pointing out "it's in statute already in HIPAA that preexisting conditions are covered," implying that if the ACA were declared unconstitutional, those protections would remain in place for everyone.
Umm … not so much.
When we checked with HHS for more information about Azar's comment, a spokesperson reiterated the secretary's statement, adding that Azar was "clear that the story on preexisting conditions doesn't end with HIPAA" and that affordability is a critical component.
So we investigated.
A Little About HIPAA
The Health Insurance Portability and Accountability Act, a lawwe have examined before, was passed by a Republican-led Congress and signed by Democratic President Bill Clinton in 1996. It is best known for safeguarding medical privacy and patient access to medical records, even though the privacy provisions were added toward the end of congressional deliberations.
HIPAA's original purpose was to end what was known as "job lock," a situation in which people with preexisting conditions were reluctant to leave jobs with health insurance even for other positions with health insurance for fear their conditions would not be covered or they would be subject to long waiting periods for coverage. Both scenarios were common at the time.
HIPAA addressed that problem — as long as people maintained "continuous" coverage, defined as having health insurance for at least 12 months without a break of more than 63 days. People who met that requirement could not have waiting periods or denials of coverage imposed upon their own or a family member's preexisting condition. HIPAA included protections for people with coverage in the small-group insurance market, which primarily comprises small businesses, by requiring insurers who sold policies in that market to sell to all small groups, regardless of health status, and to cover every eligible member of the groups — again, regardless of health status.
But HIPAA was not designed to comprehensively address the problem of people with preexisting conditions getting and keeping affordable health insurance.
For starters, the protections were only for people who already had job-based insurance, to make it easier for them to move to other job-based insurance. It did nothing for those in the individual insurance market who needed to purchase their own coverage — such as self-employed people and those working for companies that did not offer health insurance.
HIPAA attempted to create a pathway for people transitioning from employer-sponsored to individual coverage. It ensured that, after leaving a job, people who secured insurance through another law, the 1986 Consolidated Omnibus Budget Reconciliation Act, or COBRA, would be eligible to buy a "conversion" plan from their insurer once their previous job-based benefits were exhausted.
However, two giant problems arose. First, COBRA, which allows individuals to continue their employer-provided coverage for up to 18 months if they pay the entire premium themselves (plus a small administrative fee), is prohibitively expensive for most people. In 2019, the average premium for a single worker was $599 per month.
The other problem was that even if a former worker did manage to pay for COBRA coverage until that 18-month period ended, there was no limit on how much insurers could charge for the conversion policies. So, even if they were technically available, they were frequently unaffordable.
There were other problems. COBRA coverage was not available to people who worked for small businesses, or for those who became unemployed because the business they worked for failed and no longer offered insurance to anyone. HIPAA also did not stipulate which benefits had to be offered.
Email exchange with a Department of Health and Human Services spokesperson, July 10, 2020
Email exchange with Timothy Jost, emeritus professor at Washington and Lee University School of Law in Virginia, July 10, 2020
Email exchange with Karen Pollitz, a senior fellow at KFF (the Kaiser Family Foundation; KHN is an editorially independent program of the foundation), July 10, 2020
The ACA sought to deal with HIPAA's shortcomings. It required most employers to offer coverage and, for those purchasing their own, it required insurers to provide a comprehensive package of benefits at the same price to all purchasers, regardless of health status.
However, the ACA rewrote the HIPAA provisions regarding preexisting conditions, so if the ACA is struck down by the Supreme Court, it's not clear whether even HIPAA's lesser provisions would remain. Experts disagree about this, but there is a possibility that HIPAA's protections could be swept away along with the ACA.
Later in his answer to the question posed at The Hill's summit, Azar pointed out that there are significant affordability problems with coverage under the ACA, as well. "So we will work with Congress if the time ever comes, to get real affordable solutions," he said. That's true. ACA plans, even with subsidies, can be too expensive for some people, and prohibitive for those who earn just slightly too much to qualify for government help. Earlier this month, Democrats in the House passed a bill to make ACA plans more affordable.
Our Ruling
Azar's statement suggested that if the Supreme Court rules against the ACA and that sweeping law is nullified, Americans with preexisting conditions would continue to have the protections originally offered under HIPAA.
Though it contains an element of truth, it leaves out critical pieces of information. For instance, the HIPAA protections are not equivalent to those provided by the ACA. First, they are geared toward people who have work-based insurance coverage — as long as that coverage is continuous for at least 12 months with lapses no longer than 63 days. One expert we consulted pointed out that this window could be especially problematic now, during a time of "enormous economic dislocation."
Additionally, the ACA rewrote the HIPAA provisions regarding preexisting conditions — bringing into question what might become of them, too.
In her first comments about what happened, Dr. Cathy Slemp declined in a series of interviews to directly discuss the governor's decision, saying she wanted to focus on improving the public health system.
This article was first published on Friday, July 10, 2020 in Kaiser Health News.
CHARLESTON, W.Va. — The former West Virginia public health leader forced out by the governor says decades-old computer systems and cuts to staff over a period of years had made a challenging job even harder during a once-in-a-century pandemic.
Republican Gov. Jim Justice demanded Dr. Cathy Slemp’s resignation on June 24. He complained about discrepancies in the number of active cases and accused Slemp of not doing her job. He has refused to elaborate.
In her first comments about what happened, Slemp declined in a series of interviews to directly discuss the governor’s decision, saying she wanted to focus on improving the public health system. She defended how the data was handled and she detailed how money dwindled over the years. That meant fewer staff members, and they were hobbled by outdated technology that slowed their everyday work and their focus on the coronavirus.
Among the challenges: a computer network so slow that employees would sometimes lose their work when it timed out; the public’s demand for real-time data; and a struggle to feed information into systems designed when faxes were considered high-speed communication.
“We are driving a great-aunt’s Pinto when what you need is to be driving a Ferrari,” Slemp said.
A joint investigation published this month by KHN and The Associated Press detailed how state and local public health departments across the country have been starved for decades, leaving them underfunded and without adequate resources to confront the pandemic.
In West Virginia, spending on public health fell by 27% from 2010 to 2018, according to an AP/KHN analysis of data provided by the Association of State and Territorial Health Officials. Full-time jobs in the state public health department dropped from 875 in 2007 to 620 in 2019, according to the group.
Slemp said the staffing numbers were even worse than that when the pandemic hit because between 20% and 25% of all health department jobs were vacant. In epidemiology, the vacancy rate was 30%.
Those kinds of cuts “absolutely” had an effect on the department’s operations, she said.
At the beginning of the pandemic, Slemp said, workers received stacks of faxed lab reports that had to be entered manually, even though they had spent two decades trying to persuade some hospital and commercial labs to send their results electronically. After her department required it, she said, 37 labs started filing electronically within a week.
“There was a political will and a societal will to say, ‘We need to fix this,’” Slemp said.
Public health staffers had to come up with time-consuming workarounds, such as entering information about disease outbreaks onto paper forms because their computer systems weren’t designed for such work. That was the source of Justice’s complaints, which centered on exactly how many active cases of COVID-19 were in a prison, she said.
In Randolph County, where the prison is, a top local health official said confusion about the number of cases at the facility emerged because the state’s cumbersome electronic reporting system required thorough information on an infected person’s contacts before a case could be deemed cleared.
In an email, Bonnie Woodrum of the Randolph-Elkins Health Department said that it “hurt a little to be singled out as reporting inaccurate numbers” but that “it’s just a case of a small health department attempting to use an electronic reporting system that has never been easy to use.”
The problem had no impact on the ability to track new diseases in the state, Slemp said. Indeed, she said, the disputed data from the prison outbreak was being tracked, but it wasn’t getting entered as quickly as the more critical data for new cases, which they prioritized.
“Because that’s where the public health action is most critical,” Slemp said.
Slemp’s forced resignation drew criticism from leading national figures in public health, including Tom Inglesby of the Johns Hopkins Bloomberg School of Public Health. Inglesby, who serves with Slemp on the board of scientific counselors at the federal Centers for Disease Control and Prevention, praised Slemp’s management of the coronavirus in West Virginia.
He said the issue appeared to be a clerical error that was easily fixed.
“It’s a little like shooting the messenger,” Inglesby said.
Slemp said the governor never discussed his complaints with her before he demanded her resignation.
It’s challenging to be a public health leader “in a world that wants immediate information and definitive answers, when reality is, there are nuances,” she said. “Sometimes political expediency can conflict with public health practice.”
Smith reported from Providence, Rhode Island. KHN data reporter Hannah Recht contributed to this report
This story is a collaboration between The Associated Press and KHN.
Across the country, the recession has cut state revenues at the same time the pandemic has increased costs, forcing lawmakers into painful decisions about how to balance their budgets.
This article was first published on Friday, July 10, 2020 in Kaiser Health News.
As a teenager, Paulina Castle struggled for years with suicidal thoughts. When her mental health was at its most fragile, she would isolate herself, spending days in her room alone.
“That’s the exact thing that makes you feel significantly worse,” the 26-year-old Denver woman said. “It creates a cycle where you’re constantly getting dug into a deeper hole.”
Part of her recovery involved forcing herself to leave her room to socialize or to exercise outside. But the COVID-19 pandemic has made all of that much harder. Instead of interacting with people on the street in her job as a political canvasser, she is working at home on the phone. And with social distancing rules in place, she has fewer opportunities to meet with friends.
“Since the virus started,” she said, “it’s been a lot easier to fall back into that cycle.”
Between the challenges of the pandemic, the social unrest and the economic crisis, mental health providers are warning that the need for behavioral health services is growing. Yet faced with budgetary shortfalls, Colorado is cutting spending on a number of mental health and substance use treatment programs.
Across the country, the recession has cut state revenues at the same time the pandemic has increased costs, forcing lawmakers into painful decisions about how to balance their budgets. State legislatures have been forced to consider health care cuts and delay new health programs even in the midst of a health care crisis. But many lawmakers and health experts are concerned the cuts needed to balance state budgets now could exacerbate the pandemic and the recession down the line.
“Health care cuts tend to be on the table, and of course, it’s counterproductive,” said Edwin Park, a health policy professor at Georgetown University. When there’s a recession, people lose their jobs and health insurance, he noted, the very moment when people need those health programs the most.
‘Everything Has To Be On The Table’
In Colorado, for example, lawmakers had to fill a $3.3 billion hole in the budget for fiscal year 2020, which started July 1. That included cuts to a handful of mental health programs, with small overall savings but potentially significant impact on those who relied on them.
They cut $1 million from a program designed to keep people with mental illness out of the hospital and another million from mental health services for juvenile and adult offenders. Lawmakers reduced funding for substance abuse treatment in county jails by $735,000 and eliminated $5 million earmarked for addiction treatment programs in underserved communities. And that’s all on top of a 1% cut to Medicaid community providers who offer health care to the state’s poorest residents.
Some of those cuts were offset by $15.2 million in federal CARES Act funding allocated to behavioral health care programs. But some programs were completely defunded. Cuts were targeted primarily at programs that hadn’t started yet or hadn’t been fully implemented. The rationale: Those cuts wouldn’t have as deep an impact.
Doyle Forrestal, CEO of the Colorado Behavioral Healthcare Council, which represents 23 behavioral health care providers, worries that resources won’t be there for an emerging wave of people who have developed mental health or addiction issues during the pandemic.
“People who are isolated at home are drinking a lot more, maybe having other problems — isolation, economic despair,” she said. “There’s going to be a whole new influx once all of this takes hold.”
State legislators said they tried to avoid cutting programs that would hamper the response to the pandemic or the economic recovery.
“There was a desire on both sides to do everything we could to protect health care spending in Colorado,” said Democratic Rep. Dylan Roberts. “But when you’re looking at across-the-board cuts, everything has to be on the table.”
Every state is facing a similar conundrum. With tax filing deadlines pushed back to July 15, states are unsure how much income tax revenue they will collect.
So in addition to cutting back where possible, states are raiding discretionary funds — Colorado repurposed money from the tobacco settlement and marijuana taxes — to shore up their budgets. States are also tapping rainy day funds, which, according to the National Association of State Budget Officers, grew to record levels after the 2008 recession.
New Policies Delayed
Overall, at least 43 states have made some changes to facilitate access to Medicaid or the Children’s Health Insurance Program as many people have lost their job-based health insurance in the COVID crisis. And in late June, voters in Oklahoma approved expanding Medicaid to more residents. But since the start of the pandemic, states including Kansas and California have put off plans to expand eligibility for Medicaid, which provides health care to low-income people.
“These are symptoms of states that can’t deficit-spend, despite this great need for more coverage,” said Sara Collins, vice president for health care coverage and access at the Commonwealth Fund, an independent health policy research foundation based in New York. “If they spend more in one area, that means cuts in another.”
Colorado has had an aggressive health agenda in recent years but had to defer plans for a public health insurance option that could have provided a more affordable plan for people buying insurance on their own.
The legislature killed a proposal to create an annual mental health checkup. The measure would have cost the state only $13,000, but Democratic Gov. Jared Polis signaled he wouldn’t sign any bills that included new mandates for insurance companies.
Democratic Rep. Dafna Michaelson Jenet, who sponsored the checkup measure, was disappointed.
“Not every one of us is going to catch COVID, but every single one of us will have a mental health impact,” she said.
Long-Term Implications
Once the economic crisis eases, Roberts said, lawmakers will look to restore funding to some of the programs they cut.
But cuts are often easier to make than to restore — as illustrated by cutbacks made during the 2008 recession, according to Georgetown’s Park.
“Many cuts were never fully restored, even though we were in one of the longer economic expansion periods in our country’s history,” Park said.
He also worries many of the smaller primary care and behavioral health providers, who saw fewer patients come through their doors because of stay-at-home orders during the pandemic, might not survive.
“That means less access to care, including routine care like vaccinations,” he said. “If kids aren’t vaccinated, they may be more vulnerable to flu and measles, making them more vulnerable to COVID-19. That makes it more difficult for a stressed health care system to try to deal with a potential second wave of infections.”
The longer-term mental health toll may be harder to catalog.
Castle, for one, has focused on establishing routines to help her manage her mental health during the pandemic. Every Wednesday night, she plays games online with her friends. And every Friday night, she and her boyfriend build a fire in the backyard.
“If I know people are expecting me to be somewhere at 6 o’clock, that obligation encourages me to go out,” she explained. “There are days it’s a struggle. I have to focus on baby steps.”
Still, Castle worries about others who may be struggling during the pandemic. She has signed on to work with the Colorado chapter of Young Invincibles, which lobbies for health care, higher education and workforce policies to help young adults. Even as states and the federal government have found the money to help hospitals and doctors treat the physical effects of the COVID pandemic, she doesn’t see the same commitment to treating its mental health toll.
“We need to start treating mental health the same as we do physical health,” she said. This is an issue we need to stop keeping in the dark.”
If you or someone you know is thinking about suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255, or use the online Lifeline Chat, both available 24 hours a day, seven days a week.
While hospital patients can get the findings back within a day, people getting tested at urgent care centers, community health centers, pharmacies and government-run drive-thru or walk-up sites are often waiting a week or more.
This article was first published on Thursday, July 9, 2020 in Kaiser Health News.
Elliot Truslow went to a CVS drugstore on June 15 in Tucson, Arizona, to get tested for the coronavirus. The drive-thru nasal swab test took less than 15 minutes.
More than 22 days later, the University of Arizona graduate student was still waiting for results.
Truslow was initially told it would take two to four days. Then CVS said five or six days. On the sixth day, the pharmacy estimated it would take 10 days.
“This is outrageous,” said Truslow, 30, who has been quarantining at home since attending a large rally at the school to demonstrate support of Black Lives Matter. Truslow has never had any symptoms. At this point, the test findings hardly matter anymore.
Truslow’s experience is an extreme example of the growing and often excruciating waits for COVID-19 test results in the United States.
While hospital patients can get the findings back within a day, people getting tested at urgent care centers, community health centers, pharmacies and government-run drive-thru or walk-up sites are often waiting a week or more. In the spring, it was generally three or four days.
The problems mean patients and their physicians don’t have information necessary to know whether to change their behavior. Health experts advise people to act as if they have COVID-19 while waiting — meaning to self-quarantine and limit exposure to others. But they acknowledge that’s not realistic if people have to wait a week or more.
Atlanta Mayor Keisha Lance Bottoms, who announced Monday that she had tested positive for the virus, complained she waited eight days for her results in an interview on MSNBC Wednesday. During that time, she held a number of meetings with city officials and constituents — “things that I personally would have done differently had I known there was a positive test result in my house,” she said on “Morning Joe.”
“We’ve been testing for months now in America,” she added. “The fact that we can’t quickly get results back so that other people are not unintentionally exposed is the reason we are continuing in this spiral with COVID-19.”
The slow turnaround for results could also delay students’ return to school campuses this fall. It’s already keeping some professional baseball teams from training for a late July start of the season. The lag times could even foil Hawaii’s plan to welcome more tourists. The state had been requiring visitors to quarantine for 14 days, but it announced last month that starting Aug. 1 that mandate would be lifted for people who could show they tested negative within three days before arriving in the islands.
In California, Gov. Gavin Newsom noted the problem when addressing reporters Wednesday. “We were really making progress as a nation, not just as a state, and now you’re starting to see, because of backlogs with [the lab company] Quest and others, that we’re experiencing multiday delays,” he said.
The delays even apply to people in high-risk, vulnerable populations, he said, citing a massive outbreak at San Quentin State Prison, which has been sending its tests to Quest. The state is now looking at partnering with local labs, hoping they can provide faster turnaround.
Dr. Amesh Adalja, an infectious disease expert at the Johns Hopkins Center for Health Security in Baltimore, said the long waits spell trouble for individuals and complicate the national response to the pandemic.
“It defeats the usefulness of the test,” he said. “We need to find a way to make testing more robust so people can function and know if they can resume normal activities or go back to work.”
The problem is that labs running the tests are overwhelmed as demand has soared in the past month.
“We recognize that these test results contain actionable information necessary to guide treatment and inform public health efforts,” said Julie Khani, president of the American Clinical Laboratory Association, a trade group. “As laboratories respond to unprecedented spikes in demand for testing, we recognize our continued responsibility to deliver accurate and reliable results as quickly as possible.”
Dr. Temple Robinson, CEO of Bond Community Health Center in Tallahassee, Florida, said test results have gone from a three-day turnaround to 10 days in the past several weeks. Many poor patients don’t have the ability to easily isolate from others because they live in smaller homes with other people. “People are trying to play by the rules, but you are not giving them the tools to help them if they do not know if they tested positive or negative,” she said.
“If we are not getting people results for at least seven or eight days, it’s an exercise in futility because either people are much worse or they are better” by then, she said.
Given the lag in testing results from big lab companies, Robinson said her health center this month bought a rapid test machine. She held off buying the machine due to concerns the tests produced a high number of false-negative results but went ahead earlier this month in order to curtail the long waits, she said.
Robinson doesn’t blame the large labs and points instead to the surge in testing. “We are all drinking through a firehose, and none of the labs was prepared for this volume of testing,” she said. “It’s a very scary time.”
Azza Altiraifi, 26, of Vienna, Virginia, knows that all too well. She started feeling sick with respiratory symptoms and had trouble breathing on June 28. Within a few days she had chills, aches and joint pain and then a needling sensation in her feet. She went to her local CVS to get tested on July 1. She was still awaiting the result July 8.
What is most frustrating about her situation is that her husband is a paramedic, and his employer won’t let him work because he may have been exposed to the virus. He was tested July 6 and is still awaiting news.
“This is completely absurd,” Altiraifi said. She also worries that her husband may have unknowingly passed on the virus on one of his ambulance calls to nursing homes and other care facilities before he began isolating at home. He has not shown any symptoms.
Altiraifi, who still has symptoms including fatigue, said she was initially told she would have results in two to four days, but she was suspicious because after using a nasal swab to give herself the test, the box to put it in was so full it was hard to close.
Charlie Rice-Minoso, a spokesperson for CVS Health, said patients are waiting five to seven days on average for test results. “As demand for tests has increased, we’ve seen test result turnaround times vary due to temporary processing capacity limitations with our lab partners, which they are working to address,” he said.
In South Florida, the Health Care District of Palm Beach County, which has tested tens of thousands of patients since March, said findings are taking seven to nine days, several days longer than in the spring.
CityMD, a large urgent care chain in the New York City area, said it now tells patients they will likely wait at least seven days for results because of delays at Quest Diagnostics.
Quest Diagnostics, one of the largest lab companies in the United States, said average turnaround time has increased from three to five days to four to six days in the past two weeks. The company has performed nearly 7 million COVID tests this year.
“Quest is doing everything it can to add testing capacity to reduce turnaround times for patients and providers amid this crisis and the unprecedented demands it places on lab providers,” said spokesperson Kimberly Gorode.
At Treasure Coast Community Health in Vero Beach, Florida, officials are advising patients of a 10- to 12-day wait for results.
CEO Vicki Soule said Treasure Coast is deluged with calls every day from patients wanting to know where their test results are.
“The anxiety on the calls is way up,” she said.
Julie Hall, 48, of Chantilly, Virginia, got tested June 27 at an urgent care center after learning that her husband had tested positive for COVID-19 as he prepared for hip replacement surgery. She was dismayed to have to wait until July 3 to get an answer.
“I was thrilled to be negative, but by that point it likely did not matter,” she said, noting that neither she nor her husband, Chris, showed any symptoms.
“It was awful and terrible because of the unknowns and not knowing if you exposed someone else,” she said of being quarantined at home awaiting results. “Whenever you would sneeze, someone would say ‘COVID’ even though you feel completely fine.”
Senior correspondent Anna Maria Barry-Jester in California contributed to this article.
"If Donald Trump has his way, complications from COVID-19 could become a new preexisting condition," says former Vice President Joe Biden during a campaign speech in Lancaster, Pennsylvania.
This article was first published on Thursday, July 9, 2020 in Kaiser Health News.
The same day the Trump administration reaffirmed its support of a lawsuit that would invalidate all of the Affordable Care Act, Joe Biden sharply warned that the suit endangers millions of Americans.
The presumptive Democratic presidential nominee said the law is even more important now, more than a decade after it was enacted, as the COVID-19 epidemic sweeps the U.S. The virus has killed more than 130,000, and Biden noted that some who survive may have long-lasting health problems.
His speech in the battleground state of Pennsylvania focused on a legal challenge headed to the Supreme Court and the fallout if the court upholds a 2018 U.S. District Court decision that struck down the entire ACA, including preexisting condition protections that bar insurers from rejecting people with medical problems or charging them more.
“And perhaps most cruelly of all, if Donald Trump has his way, complications from COVID-19 could become a new preexisting condition,” Biden said.
The Trump administration has supported the challenge. A decision from the Supreme Court is expected next year, after the November presidential election.
But would a decision against the health law affect COVID-19 patients in the way Biden described?
We decided to check because it’s likely to come up a lot in the presidential electioneering. We reached out to the Biden campaign to find out the basis for his statement. A campaign spokesperson responded by reiterating the points made by the former vice president in his speech and sharing various news stories about COVID-19 and the preexisting condition coverage issue.
Several law and health policy experts noted that Biden is on fairly firm ground, though the issue — like many others in health care — is complicated.
First, A Little History
Before the ACA went into effect in 2014, insurers on the private market could reject applicants for coverage if they had any number of medical conditions, such as cancer, depression, heart disease — even high blood pressure, acne or plantar fasciitis. Consumers had to fill out forms listing their medical conditions when applying for coverage. An estimated 54 million Americans have a preexisting condition that could have led to a denial under pre-ACA rules, researchers estimate.
Also, at the time, some consumers had coverage cancelled retroactively once they fell ill with a serious or costly disease, as insurers would then comb through years of medical records looking for anything the consumer had failed to report as preexisting, even if it seemed to have little or nothing to do with the patient’s current medical concern.
Those rejections and cancellations mainly affected people who bought their own coverage, not those who got insurance through their jobs.
Job-based coverage, which is the main way most insured people get their plans, had some protections prior to the passage of the ACA. For example, the federal Health Insurance Portability and Accountability Act of 1996 said people who held health insurance continuously for at least a year could not face preexisting condition limits when they enrolled in a new employer plan, as long as they didn’t go uninsured for more than 63 days.
Those who didn’t meet that yearlong coverage requirement or went uninsured between jobs could find their medical conditions excluded for up to a year in a new group plan.
Before the ACA, insurers broadly defined preexisting conditions. Many included any condition for which a patient had received treatment, or even undiagnosed conditions for which a reasonable person should have sought treatment.
The ACA changed that. Among other things, it barred insurers from rejecting applicants based on their health, excluding coverage of preexisting medical conditions and charging sick people more than healthier ones. It also ended annual or lifetime dollar limits on coverage and said employers that offer insurance can’t make new workers wait more than 90 days for coverage to kick in.
Could COVID-19 Become A Preexisting Condition?
Biden’s comment raises the question of whether COVID-19 would be considered a preexisting condition in a future without the sweeping health law on the books.
Because the virus is so new, there’s no definitive answer on its long-term health effects.
But media reports note hospitals and physician groups are finding evidence that some recovered COVID patients suffer from lung damage, blood clots, neurological conditions, strokes or fatigue.
Researchers are now starting to follow patients to track long-term effects.
Given insurers’ history, it’s certainly reasonable to assume they would put what are now cropping up as potential COVID complications in the preexisting-condition category, said Sabrina Corlette, who studies the individual insurance market as co-director of the Center on Health Insurance Reforms at Georgetown University.
“There is a real concern that if those preexisting condition protections are overruled or taken down by the Supreme Court, people who have COVID-19 could be medically underwritten, charged more or be denied a policy,” said Corlette.
That is possible, said Joe Antos, resident scholar in health policy at the conservative American Enterprise Institute. But many of the people most likely to suffer complications from the coronavirus likely already had conditions like diabetes, asthma or heart disease that would already have put them in danger of being rejected for coverage under pre-ACA business practices, he added.
In other words, COVID-19 could simply find a place on a long list of other conditions that could disqualify consumers from obtaining insurance.
And even if the high court tossed out the ACA, insurers might choose to keep offering coverage to people with health problems, say some analysts, including Antos.
But this take triggers skepticism.
“Insurance companies have an obligation to shareholders, and that obligation is to maximize profits,” Corlette said. “They don’t do that by covering a lot of sick people when competitors are not doing it.”
The Biggest Unknown
Just how would Congress and the president react if the ACA is struck down?
Under a Biden presidency, coupled with Democrats holding the House and possibly winning the Senate, the ACA would definitely be replaced, the experts all agreed.
Under a second-term Trump administration, Republicans would face a dilemma because — even though the party has called for the law’s repeal since its enactment –— they have been unable to agree on how to replace it. Yet polls have consistently shown that parts of the law, especially the preexisting condition protections, are very popular with a wide swath of voters.
“They don’t want to come across as coming up hard against people who have health conditions,” said Antos.
Private practice attorney Christopher Condeluci, who served as tax and benefit counsel to the Senate Finance Committee when the ACA was drafted, agreed. He thinks Congress or the president would act to save the preexisting condition protections at least.
But how to do so is problematic. That provision is intricately tied with many other parts of the ACA, those aimed at getting as many healthy people to enroll as possible in order to spread costs out among the many, rather than the few.
The ACA did that partly by requiring most Americans to carry insurance coverage — the provision at the heart of the Texas lawsuit seeking to overturn the legislation. Restoring that requirement might be tricky, so the path forward for a split Congress or a second-term Trump presidency to come up with a solution quickly — or at all — if the Supreme Court tosses the entire law is a difficult one.
Our Ruling
Biden said that if Trump had his way, COVID complications could become a preexisting condition. He said this while discussing what might happen if the ACA is overturned by the Supreme Court. Though the statement can’t be definitively proven, there’s a lot of evidence backing it up.
First, some patients are showing at least short-term aftereffects of COVID-19, some of which could be costly. Some may prove long-term.
Second, insurers dislike costly medical conditions. Their business model is designed to have enough healthy enrollees to offset those with costly conditions. Before the ACA, they did that by rejecting people with medical conditions, charging them more or excluding coverage for those conditions. Some also temporarily delayed coverage for specific conditions in group plans offered by employers. Without the ACA, no federal law would prevent them from returning to these practices when selling plans on the individual market.
Hospitals say they are more prepared to handle the crush of patients because they have enough protective gear for their workers and know how to better treat coronavirus patients.
This article was first published on Thursday, July 9, 2020 inKaiser Health News.
Three months ago, the nation watched as COVID-19 patients overwhelmed New York City's intensive care units, forcing some of its hospitals to convert cafeterias into wards and pitch tents in parking lots.
Hospitals elsewhere prepped for a similar surge: They cleared beds, stockpiled scarce protective equipment, and — voluntarily or under government orders — temporarily canceled nonemergency surgeries to save space and supplies for coronavirus patients.
In most places, that surge in patients never materialized.
Now, coronavirus cases are skyrocketing nationally and hospitalizations are climbing at an alarming rate. But the response from hospitals is markedly different.
Most hospitals around the country are not canceling elective surgeries — nor are government officials asking them to.
Instead, hospitals say they are more prepared to handle the crush of patients because they have enough protective gear for their workers and know how to better treat coronavirus patients. They say they will shut down nonessential procedures at hospitals based on local assessments of risk, but not across whole systems or states.
Some hospitals have already done so, including facilities in South Florida, Phoenix and California's Central Valley. And in a few cases, such as in Texas and Mississippi, government officials have ordered hospitals to suspend elective surgeries.
Hospitals' decisions to keep operating rooms open are being guided partly by money. Elective surgeries account for a significant portion of hospital revenue, and the American Hospital Association estimates that the country's hospitals and health care systems lost $202.6 billion between March 1 and June 30.
"What we now realize is that shutting down the entire health care system in anticipation of a surge is not the best option," said Carmela Coyle, president of the California Hospital Association. "It will bankrupt the health care delivery system."
The associationprojects that California hospitals will lose $14.6 billion this year, of which $4.6 billion has so far been reimbursed by the federal government.
But some health care workers fear that continuing elective surgeries amid a surge puts them and their patients at risk. For instance, some nurses are still being asked to reuse protective equipment like N95 masks and gowns, even though hospitals say they have enough gear to perform elective surgeries, said Zenei Cortez, president of the National Nurses United union.
"They continue to put us at risk," Cortez said. "They continue to look at us as if we are disposable material."
Elective surgeries, generally speaking, are procedures that can be delayed without harming patients, such as knee replacements and cataract surgery.
At least 33 states and the District of Columbia temporarily banned elective surgeries this spring, and most hospitals in states that didn't ban them, such as Georgia and California, voluntarily suspended them to make sure they had the beds to accommodate a surge of coronavirus patients. The U.S. surgeon general, the Centers for Disease Control and Prevention and the American College of Surgeons also recommended health care facilities suspend nonemergency surgeries.
The suspension was always intended to be temporary, said Dr. David Hoyt, executive director of the American College of Surgeons. "When this all started, it was simply a matter of overwhelming the system," he said.
Today, case counts are soaring after many states loosened stay-at-home orders and Americans flocked to restaurants, bars and backyards and met up with friends and family for graduation parties and Memorial Day celebrations.
Nationally, confirmed cases of COVID-19 have topped 3 million. In California, cases are spiking, with a 52% jump in the average number of daily cases over the past 14 days, compared with the two previous weeks. Hospitalizations have gone up 44%.
Governors, county supervisors and city councils have responded by requiring people to wear masks, shutting down bars and restaurants — again — and closing beaches on the July Fourth holiday weekend.
But by and large, government leaders are not calling on hospitals to proactively scale back elective surgeries in preparation for a surge.
"Our hospitals are telling us they feel very strongly and competent they can manage their resources," said Holly Ward, director of marketing and communications at the Arizona Hospital and Healthcare Association. If they feel the situation warrants it, "they on their own will delay surgeries."
In some states, like Colorado, public health orders that allowed hospitals to resume nonemergency surgeries in the spring required hospitals to have a stockpile of protective equipment and extra beds that could be used to treat an influx of COVID-19 patients.
States also set up overflow sites should hospitals run out of room. In Maryland, for example, the state is using the Baltimore Convention Center as a field hospital. The state of California last week reactivated four "alternative care sites" — including a hospital that was on the verge of closure in the San Francisco Bay Area — to take COVID-19 patients should hospitals fill up.
But the decision to reduce elective surgeries in California will not come from the state. It will be made by counties in consultation with hospitals, said Rodger Butler, a spokesperson for the California Health and Human Services Agency.
The question is whether hospitals have systems in place to meet a surge in COVID-19 patients when it occurs, said Glenn Melnick, a professor of health economics at the University of Southern California.
"To some extent, elective care is good care," Melnick said "They're providing needed services. They are keeping the system going. They are providing employment and income."
In Los Angeles County, more than 2,000 COVID patients are currently hospitalized, according to county data. While that number is projected to go up by a couple of hundred people over the next few weeks, hospitals believe they can accommodate them, said county Health Services Director Christina Ghaly. In the meantime, hospitals are preparing to bring on additional staff members if needed and informing patients who have scheduled surgeries that they could be delayed.
"There's more patients with COVID in the hospitals than there has been at any point previously in Los Angeles County during the pandemic," Ghaly said. "Hospitals are more prepared now for handling that volume of patients than they were previously."
While hospitals have not stopped elective surgeries, many have not ramped up to the full schedule they had before COVID-19. And they say they are picking and choosing surgeries based on what's happening in their area.
"We were all things COVID when it was just starting," said Joshua Adler, executive vice president for physician services at UCSF Health. "We didn't know what we were facing."
But after a couple of months of treating patients, hospitals have learned how to resupply units, how to transfer patients, how to simultaneously care for other patients and how to improve testing, Adler said.
At Scripps Health in San Diego, which has taken more than 230 patients from hard-hit Imperial County to the east, its hospitals have scaled back how many transfers they will accept as confirmed COVID-19 cases rise in their own community, said Chris Van Gorder, president and CEO of Scripps Health.
A command center set up by the hospital system reviews patient counts and medical supplies and coordinates with county health officials to study how the virus is spreading. Only patients who need urgent surgeries are being scheduled, Van Gorder said.
"We're only allowing our doctors to schedule cases two weeks out," Van Gorder said. "If we see a sudden spike, we have to delay."
In California's Central Valley and in Phoenix, where cases and hospitalizations are surging, Mercy hospitals have suspended elective surgeries to focus resources on COVID-19 patients.
But the other hospitals in the CommonSpirit Health system, which has 137 hospitals in 21 states, are not ending elective surgeries — as they did in the spring — and are treating patients with needs other than COVID, said Marvin O'Quinn, the system's president and chief operating officer.
"In many cases their health deteriorated because they didn't get care that they needed," said O'Quinn, whose hospitals lost close to a $1 billion in two months. "It's not only a disservice to the hospital to not do those cases; it's a disservice to the community."