There is an emerging consensus that many services that once required an office visit can be provided easily and safely — and often more effectively — through a video chat, a phone call or even an email.
This article was published on Monday, June 7, 2021 in Kaiser Health News.
As the COVID crisis wanes and life approaches normal across the U.S., health industry leaders and many patient advocates are pushing Congress and the Biden administration to preserve the pandemic-fueled expansion of telehealth that has transformed how millions of Americans see the doctor.
The broad effort reaches across the nation's diverse healthcare system, bringing together consumer groups with health insurers, state Medicaid officials, physician organizations and telehealth vendors.
And it represents an emerging consensus that many services that once required an office visit can be provided easily and safely — and often more effectively — through a video chat, a phone call or even an email.
"We've seen that telehealth is an extraordinary tool," said David Holmberg, chief executive of Pittsburgh-based Highmark, a multistate insurer that also operates a major medical system. "It's convenient for the patient, and it's convenient for the doctor. … Now we need to make it sustainable and enduring."
Last fall, a coalition of leading patient groups — including the American Heart Association, the Arthritis Foundation, Susan G. Komen and the advocacy arm of the American Cancer Society — hailed the expansion of telehealth, noting the technology "can and should be used to increase patient access to care."
But the widespread embrace of telemedicine — arguably the most significant healthcare shift wrought by the pandemic — is not without skeptics. Even supporters acknowledge the need for safeguards to prevent fraud, preserve quality and ensure that the digital health revolution doesn't leave behind low-income patients and communities of color with less access to technology — or leave some with only virtual options in place of real physicians.
Some worry that telehealth, like previous medical innovations, may become another billing tool that simply drives up costs, a fear exacerbated by the hundreds of millions of dollars flowing into the burgeoning digital health industry.
Companies offering remote urgent care, virtual primary care and new wearable technologies to monitor patient health are exploding, with the annual global telehealth market expected to top $300 billion by 2026, up nearly fivefold from 2019, according to research company PitchBook.
"I don't think there's any debate that there is a value in better access, but if this is just a one-off service that adds another billing option without fitting into patients' regular care, I don't know if it will do much for patients' health," said Tom Banning, head of the Texas Academy of Family Physicians.
Perhaps the most contentious issue facing politicians, insurers and hospitals is how much a telehealth visit is worth in a system that is already breaking the bank.
While Medicare and other insurers fueled the explosion of telehealth over the past year by paying the same rates as for in-person visits, many are expected to push for lower prices when the federally designated public health crisis ends. At the same time, physicians and hospitals are looking to maintain income.
"Payers are unlikely to give providers carte blanche," said Dr. Hoangmai Pham, a former senior medical official at health insurance giant Anthem. But Pham noted insurers could reward physicians and hospitals that take greater responsibility for their patients' overall health with higher rates for telehealth. "There's an opportunity here," she said.
For now, tens of millions of Americans have gotten used to meeting their doctor on a laptop or smartphone, and pressure is building on the federal and state governments to loosen rules to preserve virtual visits after the health crisis ends.
"I don't want to go back," said Suzy Brantley, a 67-year-old Texan who works at an accounting firm outside Dallas.
Brantley has been going to the same medical practice for more than 15 years. "I love them there," she said. But when the practice closed its doors last spring, requiring virtual visits, Brantley found she enjoyed the more convenient way to do routine business like refill a prescription.
"You don't have to leave work to go to the doctor," she said. "I can just step into the break room for a few minutes and use my phone. … I love it."
She's far from alone. In a nationwide poll last year, 8 in 10 Americans who had used telehealth said they "liked it" or "loved it." Nearly the same share said they were likely to continue using it after the pandemic, according to the survey by the Harris Poll.
Just a year ago, telehealth — or telemedicine, as it's also called — was largely a curiosity. Patient and physician wariness and strict rules about how doctors could bill had squelched widespread use.
Fearing fraud and overuse, the federal government tightly restricted the kind of video and audio visits that could be billed to Medicare, limiting use mainly to rural areas and to visits in which a doctor was in an office or hospital, rather than working remotely.
"There was a fear that if there was the slightest opening in the Medicare payment system, people would find a way to abuse it," said Sean Cavanaugh, who oversaw Medicare during the Obama administration.
That changed suddenly in spring 2020 as pandemic lockdowns shuttered physician offices. Almost overnight, doctors were forced to pivot to virtual care to maintain contact with patients and keep money flowing.
The Trump administration moved quickly to facilitate the shift. The Medicare agency dramatically expanded the kind of services that could be provided virtually. Officials added 140 telehealth services to the list of what Medicare would pay for during the pandemic, including emergency visits, eye exams, speech and hearing therapy, and nursing home care.
Critically, Medicare raised fees for virtual visits to match those for in-office exams, a move followed by state Medicaid programs and many commercial insurers.
The surge was explosive. While fewer than 1% of primary care visits in Medicare occurred virtually in January 2020, by April nearly half did, according to data compiled by the Medicare Payment Advisory Commission.
At UnitedHealth Group, the nation's largest health insurer, the number of covered telehealth visits increased nearly thirtyfold, rising from 1.2 million visits in 2019 to 34 million last year. Other insurers reported as much as an eightyfold increase.
"Very quickly, it became clear that we could deliver very good care to our patients via televisit," said Dr. Manish Naik, chief medical information officer at Austin Regional Clinic in central Texas.
The medical group not only helped its primary care physicians pivot to telehealth, but it also built a virtual urgent care system that allows patients to connect by video with on-call doctors 24 hours a day, a model used by large medical systems such as Kaiser Permanente.
Other systems are moving beyond televisits to expand use of remote monitoring tools in people's homes that track vital signs of patients with chronic illnesses such as diabetes.
Perhaps nowhere has telehealth proved more transformational than in mental health services and treatment for patients addicted to drugs.
"Telehealth has been a godsend," said Ellen Bemis, chief executive of AMHC, a network of behavioral health clinics in rural northern Maine. Bemis said the clinics are already seeing patients adhere better to their medications as they remain in better contact virtually.
"I hope we never go back," she said.
In Alaska, health officials feel the same way. "What we've seen through COVID was amazing," said state Medicaid director Albert Wall, noting a major decline in patients missing appointments.
Whether these changes endure depends largely on Congress and the Biden administration, which hasn't indicated whether it will make permanent the looser telehealth rules rolled out last year. The rules will sunset when the public health emergency ends, likely at the end of this year.
The uncertainty is fueling an urgent effort by physicians, hospitals, patient advocates and others to persuade government officials not to reimpose the strict limitations.
Democrats and Republicans in Congress have introduced bills to cement the changes. In statehouses, advocates for expanding telehealth have introduced more than 650 bills, according to the Alliance for Connected Care, a telehealth lobbying coalition.
"We've seen the potential of telehealth," said Dr. Christopher Crow, chief executive of Texas-based Catalyst Health Network, which helps primary care physicians manage their practices. "Now, we have to make sure we realize it before everyone starts shifting back to the exam rooms."
Major physician groups are pushing to maintain equal reimbursement for telehealth and in-person visits.
Dr. Susan Bailey, president of the American Medical Association, said Medicare should continue to allow patients to receive virtual care in their homes and in all areas of the country, not just rural areas.
The association is also pushing for Medicare to keep reimbursing doctors for consulting with patients by phone, a move Bailey said would ensure that patients without broadband internet service aren't left behind.
The push for more billable services has raised concerns about fraud, especially as physicians and hospitals develop more efficient systems to see patients remotely. "Overuse is absolutely a concern," said Dr. Von Nguyen, chief medical officer at Blue Cross Blue Shield of North Carolina. "Once these systems are in place, I suspect, the risk will be greater."
Nevertheless, many insurers and state Medicaid programs, two groups that typically look more skeptically at services that can drive up costs, are backing telehealth expansion.
And despite initial fraud concerns, nearly a dozen Medicaid and insurance industry officials interviewed for this article noted that thus far they've seen little evidence of widespread misuse.
"There is fraud in traditional medical care, too," said Dr. Donna O'Shea, a senior executive at UnitedHealth Group.
Several insurance officials said telehealth could ultimately save money by routing some medical care from high-cost doctors' offices and hospitals to lower-priced virtual visits, particularly for urgent care.
And some insurance companies — including Harvard Pilgrim Healthcare in New England and Priority Health in Michigan — are marketing health plans with lower premiums that steer patients to virtual care.
"We see this being a long-term change," said Dr. Michael Sherman, Harvard Pilgrim's chief medical officer.
Sherman said the health plan is even exploring whether to help low-income patients get internet access to expand telehealth further. "We have proven to ourselves that this works," he said.
KHN correspondent Rachana Pradhan and digital producer Hannah Norman contributed to this report.
The growing political pressure to discover Chinese malfeasance or a lab accident at the root of the pandemic could make a definitive answer less, rather than more, likely.
This article was published on Friday, June 4, 2021 in Kaiser Health News.
President Joe Biden has ordered U.S. intelligence agencies to determine whether the COVID virus, or a near ancestor, emerged from a cave, a live-animal market, a farm — or a secretive Chinese laboratory.
But it's doubtful this probe will yield definitive insights, and it could even backfire.
Some experts hypothesize that global pressure could prompt a Chinese scientific whistleblower to come forward with evidence of a lab leak. After all, it is unlikely such an accident could have occurred without dozens of people finding out about the leak, or an ensuing cover-up.
But the growing political pressure to discover Chinese malfeasance or a lab accident at the root of the pandemic could make a definitive answer less, rather than more, likely, according to virologists and experts on U.S.-China scientific exchanges.
"We have to reduce the political tension and let the scientists do the work, not the politicians," said Dr. Jennifer Huang Bouey, a Chinese-born Rand Corp. researcher.
Yet that seems like a pipe dream. In the United States, the lab leak theory is part of the conservative arsenal of attacks on those in science and the media who criticized President Donald Trump's handling of the pandemic. For the ruling Chinese Communist Party, the political implications of acknowledging a lab leak and subsequent cover-up are a non-starter. It would leave China essentially responsible for starting a global pandemic that has killed 6 million and ground economies to a halt.
As Biden last week announced a 90-day review of evidence on the virus's origin — which could involve a review of documents from U.S. agencies that helped fund Chinese viral research— Chinese officials at a World Health Organization meeting dismissed the review and withdrew a promise to cooperate with scientists examining the full slate of origin possibilities.
During its visit to China in February, a WHO investigative team received agreement from Chinese blood banks to preserve samples of donations that could indicate when and where the virus might have been circulating before it swept over the city of Wuhan in December 2019.
The team wants to go back to China, extending its investigation to markets and farms where animals like civet cats, raccoon dogs and bamboo rats — potential carriers of the virus as it leaped from bats to humans — were raised as part of a $70 billion "wildlife farming" industry. In 2003, China banned the sale of such exotic wildlife at "wet markets" — which mainly sell fish and game like live chickens — after they were implicated as the origin of the SARS epidemic, though such animals have returned to markets over the years.
Further study is impossible without Chinese cooperation, which is mired in politics, the WHO investigators say.
"We're not following all these obvious leads now," Dr. Marion Koopmans, a leading Dutch virologist who was part of the WHO team, said last week. "Everything is stalled."
Her team has been criticized for caving to Chinese pressure by failing to seek a strict audit of the Wuhan Institute of Virology, the center of allegations about a lab leak. But to forcefully demand such an audit would require evidence of a leak, rather than speculation based on classified intelligence reports and theoretical gaps in data, Koopmans said. Besides, the Chinese government won't open its books. It has closed access to the data, claiming there had been thousands of hacking attempts against the Wuhan Institute.
That awkward standoff could harm U.S.-Chinese scientific cooperation, which has gradually expanded over the past 40 years and remained strong despite Trump administration attacks. Whether a lab leak happened or not, it's hard to see how a weakening of scientific exchanges would be a good thing for either country.
Full-tuition-paying Chinese students made up the majority of the international enrollees at U.S. colleges and universities in 2019, though Chinese interest in U.S. schools seems to be ebbing. U.S. laboratories depend on Chinese scholars, many of whom end up remaining in the United States. Scholars from the two countries co-publish scientific papers more often than any other national "dyad," according to research by Caroline Wagner of the Ohio State University.
But those partnerships have had their hiccups, sometimes for political reasons. With AIDS and SARS, the Chinese were either reluctant to allow their scientists to release data or released counts that many Western experts doubted were accurate.
Trump curtailed scientific exchanges as early as 2017, issuing fewer visas and raising FBI vigilance of academics with ties to China. Some interagency agreements were allowed to lapse and, in 2018, a 45-member Centers for Disease Control and Prevention contingent in China was cut to 10. Trump saw this as a punishment of the Chinese, but it effectively blinded the U.S. to the goings-on in Chinese epidemiology.
Otherwise, "maybe we'd have had a quicker leg up on the outbreak," said Ben Corb, spokesperson for the American Society for Biochemistry and Molecular Biology.
Despite his anti-China stance, Trump in 2018 renewed a landmark 1979 agreement authorizing scientific and technological cooperation among the Chinese and U.S. governments. However, that renewal document is secret — presumably, Trump was not happy to have to take the advice of his scientific advisers — and it's impossible to come by a copy, according to Duke University business professor Denis Simon, an expert on the US-China scientific relationship.
The Biden administration is said to favor improving scientific cooperation — for example, by easing limits on visas for Chinese scholars. And while Trump clearly viewed the lab leak hypothesis as an opportunity to blame China for the administration's misfortunate COVID response — an association that tarnished the theory's plausibility during the Trump years — Biden seems to want an answer to the question, at least in part to prevent future pandemics.
Since the turn of the century and especially since SARS, China has sent many biologists to train in the United States, and they are now leery of being seen as unreliable partners in disease investigations. The Chinese government has copied many aspects of the U.S. scientific and public health system, Bouey noted. Close collaborations and friendships have resulted. Toward the beginning of the pandemic, Dr. Anthony Fauci, the National Institutes of Health's top infectious disease specialist, was in regular contact by email with George Gao, the Oxford- and Harvard-trained scientist who runs China's equivalent of the CDC.
Even with Chinese government cooperation, we might never know how COVID began. But if the intelligence review suggests or manages to determine that a lab leak did cause the pandemic, and China continues to stonewall, it's hard to predict what might happen.
"I think there will be hell to pay," said Simon. "We haven't figured out the consequences to the answer. I'm very concerned about our ability to manage the emotions loosed if that hypothesis were to be accepted."
Now that mask requirements and other measures to prevent the spread of the virus are easing, efforts to boost vaccination rates in underserved communities are even more urgent.
This article was published on Friday, June 4, 2021 in Kaiser Health News.
Throughout the COVID-19 vaccination effort, public health officials and politicians have insisted that providing shots equitably across racial and ethnic groups is a top priority.
But it's been left up to states to decide how to do that and to collect racial and ethnic data on vaccinated individuals so states can track how well they're doing reaching all groups. The gaps and inconsistencies in the data have made it difficult to understand who's actually getting shots.
Just as an uneven approach to containing the coronavirus led to a greater toll for Black and Latino communities, the inconsistent data guiding vaccination efforts may be leaving the same groups out on vaccines, said Dr. Kirsten Bibbins-Domingo, an epidemiologist at the University of California-San Francisco.
"At the very least, we need the same uniform standards that every state is using, and every location that administers vaccine is using, so that we can have some comparisons and design better strategies to reach the populations we're trying to reach," Bibbins-Domingo said.
Now that federal, state and local governments are easing mask requirements and ending other measures to prevent the spread of the virus, efforts to boost vaccination rates in underserved communities are even more urgent.
At St. James United Methodist Church, a cornerstone for many in the Black community in Kansas City, Missouri, in-person services recently resumed after being online for more than a year. St. James has also been hosting vaccination events designed to reach people in the neighborhood.
"People are really grieving not only the loss of their loved ones, but the loss of a whole year, a loss of being lonely, a loss being at home, not being able to come to church. Not being able to go out into the community," said Yvette Richards, St. James' director of community connection.
Missouri's population is 11% African American, but COVID cases among African Americans accounted for 25% of the total cases for the state, according to an analysis by KFF.
Richards said St. James has lost many congregants to the coronavirus, and the empty pews where they once sat on Sundays serve as stark reminders of all this community has been through during the pandemic.
Missouri's public COVID data appears to show robust data on vaccination rates broken down by race and ethnicity. But several groups are seen lagging far behind on vaccinations, including African Americans, who appear to have a vaccination rate of just 17.6%, nearly half of the 33% rate for the state as a whole.
To Dr. Rex Archer, director of the Kansas City health department, one number is a giveaway that this data isn't right. It shows a completed vaccination rate of 64% for "multiracial" Missourians. Such an exceptionally high rate for one group beggars belief, according to Archer.
"So, there's some huge problem with the way the state is collecting race and ethnicity under COVID vaccination," Archer said.
Missouri state officials have acknowledged since February that this data is wrong, but they haven't managed to fix it or explain exactly what's causing it. Archer suggested the inflated multiracial rate is probably due to different racial data being reported when individuals receive first and second shots.
Other problems have been detected, including missing racial and ethnic data for many people who have been vaccinated, and the use of multiple categories such as "other" and "unknown."
The state also noted it used national racial percentages in the state's vaccination data rather than actual percentages based on the state's population. For example, earlier in the vaccination effort, the state used national racial data, which shows nearly 6% of the population is Asian, even though Missouri's population is 2.2% Asian.
Health officials are working to target vaccination campaigns in communities where rates are low, but Archer said the state's data provides little help.
"I mean, we have to look at it, but it's got too many variables to be something we can count on," Archer said.
Though racial and ethnic categories are clearly defined in national U.S. Census data, the same data is not collected uniformly by states.
For example, South Carolina's vaccination data lumps together Asians, Native Americans and Pacific Islanders in one category. In Utah, residents can pick more than one race. Wyoming doesn't report racial or ethnic data for vaccinations at all.
Bibbins-Domingo said the missing or inconsistent data doesn't necessarily mean tracking equity is a lost cause. Vaccination rates for census tracts where racial and ethnic data is known can be used as a proxy to estimate vaccine allocations.
However, Bibbins-Domingo argued that the pandemic has shined a light on racial data problems that have persisted far too long in U.S. public health.
"What my hope is, is that our lessons from COVID really cause all of us to think about the infrastructure we need within our state and nationally to make sure we are prepared next time," Bibbins-Domingo said. "Data is our friend."
Local leaders and health officials in Missouri are scrambling to boost vaccination rates, especially among vulnerable communities, after Republican Gov. Mike Parson recently announced steps to urge residents back to working in person.
Parson ordered state workers back to the office in May and said he would end additional federal pandemic-related benefits for unemployed workers in June, despite vaccination rates across the state being well below what Missouri health experts had hoped to achieve.
Jackson County, Missouri, which includes most of Kansas City, authorized $5 million in federal CARES funding last month to increase vaccinations in six ZIP codes with large Black populations and low vaccination rates. The project will address problems of both access and hesitancy and focus on reaching out to individuals and neighborhoods.
Although many of the state's vaccination efforts have involved large mass events, St. James Pastor Jackie McCall said she's been talking with many in her church and community who need encouragement to have faith in the vaccines.
"So let's go ahead and let's trust," McCall told congregants. "Let's trust the process. Let's trust God. Let's trust the science."
This story is part of a reporting partnership that includes KCUR, NPR and KHN.
This article was published on Friday, June 4, 2021 in Kaiser Health News.
The Food and Drug Administration's decision next week whether to approve the first treatment for Alzheimer's disease highlights a deep division over the drug's benefits as well as criticism about the integrity of the FDA approval process.
The agency said it will decide by June 7 the fate of Biogen's drug aducanumab, despite a near-unanimous rejection of the product by an FDA advisory committee of outside experts in November. Doubts were raised when, in 2019, Biogen halted two large clinical trials of the drug after determining it wouldn't reach its targets for efficacy. But the drugmaker later revised that assessment, stating that one trial showed the drug reduced the decline in patients' cognitive and functional ability by 22%.
A lot is riding on the drug for Biogen. It is projected to carry a $50,000-a-year price tag and would be worth billions of dollars in revenue to the Cambridge, Massachusetts, company.
The FDA is under pressure because an estimated 6 million Americans are diagnosed with Alzheimer's, a debilitating and ultimately fatal form of dementia, and there are no drugs on the market to treat the underlying disease. Although some drugs slightly mitigate symptoms, patients and their families are desperate for a medication that even modestly slows its progression.
Aducanumab helps the body produce antibodies that remove amyloid plaques from the brain, which has been associated with Alzheimer's. It's designed for patients with mild-to-moderate cognitive decline from Alzheimer's, of which there are an estimated 2 million Americans. But it's not clear whether eliminating the plaque improves brain function in Alzheimer's patients. So far, nearly two dozen drugs based on the so-called amyloid hypothesis have failed in clinical trials.
Besides questions about whether the drug works, there also are safety issues. More than one-third of patients in one of the trials experienced brain swelling and nearly 20% had brain bleeding, though those symptoms generally were mild and controllable. Because of those risks, patients receiving aducanumab have to undergo regular brain monitoring through expensive PET scans and MRI tests.
"There's a lot of hope among my patients that this is going to be a game changer," said Dr. Matthew Schrag, an assistant professor of neurology at Vanderbilt University. "But the cognitive benefits of this drug are quite small, we don't know the long-term safety risks, and there will be a lot of practical issues in deploying this therapy. We have to wait until we're certain we're doing the right thing for patients."
Many aspects of aducanumab's journey through the FDA approval process have been unusual. It's "vanishingly rare" for a drug to continue on toward approval after its clinical trial was halted because unfavorable results showed that further testing was futile, said Dr. Peter Lurie, president of the Center for Science in the Public Interest and a former FDA associate commissioner. And it's "mind-boggling," he added, for the FDA to collaborate with a drugmaker in presenting a joint briefing document to an FDA advisory committee.
"A joint briefing document strikes me as completely inappropriate and an abdication of the FDA's claim to being the best regulatory agency in the world," Lurie said.
Three FDA advisory committee members who voted in November against approving the drug wrote in a recent JAMA commentary that the FDA's "unusual degree of collaboration" with Biogen led to criticism that it "potentially compromised the FDA's objectivity." They cast doubt on both the drug's safety and the revised efficacy data.
The FDA and Biogen declined to comment for this article.
Despite the uncertainties, the Alzheimer's Association, the nation's largest Alzheimer's patient advocacy group, has pushed hard for FDA approval of aducanumab, mounting a major print and online ad campaign last month. The "More Time" campaign featured personal stories from patients and family members. In one ad, actor Samuel L. Jackson posted on Twitter, "If a drug could slow Alzheimer's, giving me more time with my mom, I would have read to her more."
But the association has drawn criticism for having its representatives testify before the FDA in support of the drug without disclosing that it received $525,000 in contributions last year from Biogen and its partner company, Eisai, and hundreds of thousands of dollars more in previous years. Other people who testified stated upfront whether or not they had financial conflicts.
Dr. Leslie Norins, founder of a group called Alzheimer's Germ Quest that supports research, said the lack of disclosure hurts the Alzheimer's Association's credibility. "When the association asks the FDA to approve a drug, shouldn't it have to reveal that it received millions of dollars from the drug company?" he asked.
But Joanne Pike, the Alzheimer's Association's chief strategy officer, who testified before the FDA advisory committee about aducanumab without disclosing the contributions, denied that the association was hiding anything or that it supported the drug's approval because of the drugmakers' money. Anyone can search the association's website to find all corporate contributions, she said in an interview.
Pike said her association backs the drug's approval because its potential to slow patients' cognitive and functional decline offers substantial benefits to patients and their caregivers, its side effects are "manageable," and it will spur the development of other, more effective Alzheimer's treatments.
"History has shown that approvals of first drugs in a category benefit people because they invigorate the pipeline," she said. "The first drug is a start, and the second and third and fourth treatment could do even better."
Lurie disputed that. He said lowering the FDA's standards and approving an ineffective or marginally effective drug merely encourages other manufacturers to develop similar, "me too" drugs that also don't work well.
The Public Citizen Health Research Group, which opposes approval of aducanumab, has called for an investigation of the FDA's "unprecedented and inappropriate close collaboration" with Biogen. It asked the inspector general of the Department of Health and Human Services to probe the approval process, which that office said it would consider.
The group also urged the acting FDA commissioner, Dr. Janet Woodcock, to remove Dr. Billy Dunn, an aducanumab advocate who testified about it to the advisory committee, from his position as director of the FDA's Office of Neuroscience and hand over review of the drug to staffers who weren't involved in the Biogen collaboration.
Woodcock refused, saying in a letter that FDA "interactions" with drugmakers make drug development "more efficient and more effective" and "do not interfere with the FDA's independent perspective."
Although it would be unusual for the FDA to approve a drug after rejection by an FDA advisory committee, it's not unprecedented, Lurie said. Alternatively, the agency could approve it on a restricted basis, limiting it to a segment of the Alzheimer's patient population and/or requiring Biogen to monitor patients.
"That will be tempting but shouldn't be the way the problem is solved," he said. "If the product doesn't work, it doesn't work. Once it's on the market, it's very difficult to get it off."
If the drug is approved, Alzheimer's patients and their families will have to make a difficult calculation, balancing the limited potential benefits with proven safety issues.
Anne Saint, whose husband, Mike, had Alzheimer's for a decade and died in September at age 71, said that based on what she's read about aducanumab, she wouldn't have put him on the drug.
"Mike was having brain bleeds anyway, and I wouldn't have risked him having any more side effects, with no sure positive outcome," said Saint, who lives in Franklin, Tennessee. "It sounds like maybe that drug's not going to work, for a lot of money."
Their adult daughter, Sarah Riley Saint, feels differently. "If this is the only hope, why not try it and see if it helps?" she said.
Newsom, a self-described feminist and the father of four young children, has long advocated family-friendly health and economic policies. Flush with a projected budget surplus of $75.7 billion, state politicians have come up with myriad legislative and budget proposals to make poorer families healthier and wealthier.
They include ending sales taxes on menstrual products and diapers; adding benefits such as doulas and early childhood trauma screenings to Medi-Cal, the state's Medicaid program; allowing pregnant women to retain Medi-Cal coverage for a year after giving birth; and a pilot program to provide a universal basic income to low-income new parents.
"COVID-19 laid inequity bare for all to see," Assembly member Wendy Carrillo (D-Los Angeles) said in a written statement. She is the co-author of Senate Bill 65, led by Sen. Nancy Skinner (D-Berkeley), which would pour hundreds of millions of dollars into family and healthcare programs annually, focusing on minority groups that Carrillo said were "pushed out of the social safety net by the prior White House."
Newsom and the Democratic-controlled legislature are unified on major healthcare and social safety-net expansions, which would direct billions in health benefits and cash assistance to the state's most vulnerable residents and low-income parents. Legislative Democrats for years have pushed a progressive agenda to help struggling parents and families, featuring proposals like those to permanently end taxes on menstrual products and diapers — expected to cost the state millions.
"We don't need to balance the budget on half of the population that has a uterus," said Assembly member Cristina Garcia (D-Bell Gardens), who has for years sought an end to the "pink tax" on diapers and menstrual products.
Skinner, chair of the Senate budget committee, is among the powerful lawmakers who've put forward legislation to make childbirth safer and parenthood more affordable. Her bill, which cleared the Senate and was up for consideration this week in the state Assembly, has several features that would dramatically expand maternal healthcare (transgender men also get pregnant and give birth).
Before the pandemic, Medi-Cal covered mothers only up to 60 days after their pregnancies ended unless their income fell below a certain line or they had a mental health diagnosis. Skinner's bill, part of a broader national push to improve birth outcomes, would expand full Medi-Cal coverage to 12 months after the end of a pregnancy. Other parts of the bill would intensify state reporting and reviews of fetal and pregnancy-related deaths and severe maternal morbidity, expand housing benefits for families that have a pregnant member, and increase training programs for midwives.
Newsom's $268 billion budget blueprint includes about $200 million a year to fully implement the expansion of Medi-Cal coverage for new mothers, with matching dollars from the federal government until those funds expire in 2027. If the expansion were not renewed, the state would revert to previous Medi-Cal qualifications.
"Not all postpartum issues end at 60 days, and when patients lose insurance, we can't address them in the usual way," said Dr. Yen Truong, an OB-GYN who works with the American College of Obstetricians and Gynecologists on legislative issues in California.
About half of pregnancy-related deaths occur during the pregnancy or on the day of delivery, but about 12% take place between seven weeks and a year after giving birth, according to the Centers for Disease Control and Prevention.
The U.S. had 17.4 early maternal deaths per 100,000 live births in 2018, according to the most recent CDC data with state figures. California's rate, 11.7 per 100,000, was among the lowest in the nation, but the state collects data on maternal deaths in a way that could result in underestimates.
California's overall numbers also obscure stark racial disparities. Statewide, Black infants averaged 7.8 deaths per 1,000 live births, compared with an average of three deaths among white babies. Data from 2013 from Los Angeles County showed Black women had pregnancy-related deaths at rates more than four times as high as the overall rate in the state's largest county.
"Given our state's wealth and medical advancements, this is unacceptable," Skinner, vice chair of the Legislative Women's Caucus, said in a news release.
Democrats also appear unified on another aspect of Skinner's bill: a pilot program to test a universal basic income program for struggling families. The bill would give $1,000 a month to low-income expectant and new parents with kids under 2 years old in counties that decide to participate. Newsom has also proposed $35 million over five years for pilot programs for universal basic income.
These issues could play well, especially among women, and improve Newsom's standing going into a recall election later this year, said Rose Kapolczynski, a longtime campaign consultant to former U.S. Sen. Barbara Boxer who has worked on reproductive healthcare issues in Sacramento.
Indefinitely rescinding sales taxes on diapers and menstrual products — the taxes have been temporarily lifted since early last year — is a particular no-brainer because of its bipartisan appeal, she said.
"It's hard for Republicans to attack something that is a tax cut, and sales taxes are regressive, so progressives would like it," Kapolczynski said.
As for Medi-Cal expansions, Kapolczynski said that even though it wouldn't affect most Californians, the pandemic has made healthcare even more important to voters. "The budget surplus is allowing many things that were called impossible to be possible, and that includes healthcare bills," she said.
Investing in California's young families could help close the racial gap in maternal and infant mortality, said Nourbese Flint, executive director of the Black Women for Wellness Action Project, which endorsed Skinner's bill.
California's would become the first Medicaid program to include "full spectrum" doula coverage, meaning it would include care for women who have abortions, miscarriages and stillbirths, said Amy Chen, a senior attorney at the National Health Law Program.
"California has always led the country and been a little bit in front of where our federal government is when it comes to covering folks," Flint said.
California Healthline correspondent Angela Hart contributed to this report.
The U.S. is the only industrialized nation in which the maternal death rate has been rising. Each year, about 700 deaths are due to pregnancy, childbirth or subsequent complications, according to the Centers for Disease Control and Prevention.
When someone dies while pregnant or within a year of childbirth in Illinois, that's considered a maternal death. Karen Tabb Dina is a maternal health researcher at the University of Illinois at Urbana-Champaign who serves on a state-level committee that's trying to figure out what's killing these mothers.
The group's most recent analysis found that about 75 women in Illinois die from pregnancy-related causes each year. Consistent with national trends, Black women are at greater risk than white women, and most of the deaths were preventable.
"It's cause for alarm," Tabb Dina said. "Our country is in a crisis in terms of unnecessary maternal deaths."
In recent years, Illinois' Maternal Mortality Review Committee has urged policy changes that would remove barriers to healthcare for pregnant and postpartum women. At the top of the list: Make sure low-income moms don't lose Medicaid coverage after a baby is born. Some women lose coverage as soon as two months after giving birth.
In April, Illinois became the first state to be approved by the U.S. Department of Health and Human Services to extend Medicaid up to a full year after a pregnancy.
"This is tremendous," Tabb Dina said. "One of the greatest risk factors for maternal deaths is lack of access to care: not being able to access the right providers and to be seen in a timely manner."
Medicaid, the state and federal program mainly for low-income Americans, covers people with higher incomes during pregnancy — but most states kick these women off the rolls 60 days after they give birth. As a result, hundreds of thousands of women who've recently had a baby end up uninsured each year.
"Disruptions in Medicaid coverage results in higher costs and worse health outcomes," HHS Secretary Xavier Becerra said in a press briefing in April, citing a federal report on the consequences of Medicaid churning. "More than half of pregnant women in Medicaid experienced a coverage gap in the first six months of postpartum care."
With the extension of Medicaid under the Affordable Care Act, mothers in Illinois with incomes up to about double the federal poverty level can keep their coverage for a year postpartum. Several other states — including New Jersey, Georgia and Virginia — are taking similar steps.
Although the $1.9 trillion American Rescue Plan was passed to stimulate the economy amid the COVID-19 pandemic, it also contains a less-noticed provision addressing the postpartum coverage. For the 12 states that never expanded Medicaid under the ACA, the law provides new financial incentives for them to make Medicaid available to adults with incomes up to 138% of the federal poverty level ($12,880 for an individual, $21,960 for a family of three).
In addition, the stimulus package offers all states an easier option for extending postpartum Medicaid coverage beyond the 138% income limit. Starting in April 2022, states can file a state plan amendment to their Medicaid program — a process that has fewer roadblocks to federal approval than the traditional route of applying for a federal waiver.
Maternal health experts say extending Medicaid coverage to a full year postpartum makes sense because pregnancy-related complications — physical and mental — aren't limited to the first few months.
"Many [postpartum] health issues and health problems extend beyond the 60-day period that Medicaid is currently covering," said Dr. Rachel Bervell, an obstetrician in Seattle and co-founder of the Black OBGYN Project, which aims to raise awareness about racial injustices in maternal healthcare.
A report based on data from nine states found nearly 20% of pregnancy-associated deaths happen between 43 days and one year postpartum.
Bervell clearly recalls learning about that statistic. "It was just so jarring," she said. "It makes you worried about the 1 in 5 individuals we may be missing."
Medicaid is the largest payer for maternity care in the United States. Black women are overrepresented in the Medicaid population and are also overrepresented among those who get kicked off their plan after 60 days.
Chronic diseases — like diabetes and hypertension — are more prevalent and less well-controlled among Black women, putting them at higher risk of pregnancy-related complications.
There are also structural barriers to healthcare, such as inadequate housing, transportation and child care. Many of these barriers stem from racist and discriminatory policies, like redlining, linked to worse health outcomes. Black mothers are also more likely to be denied medication for postpartum pain.
Racial disparities in maternal health outcomes are caused by racism, not race. So the problem can't be solved, Bervell said, without addressing systemic racism in medicine and the broader society.
U.S. Rep. Robin Kelly (D-Ill.) said the racial disparities are unacceptable. She championed the state's Medicaid change and is working on other policies to improve maternal health data collection and establish national obstetric emergency protocols.
"When you look at educated Black women with money, they still die more than less-educated, less-wealthy white women," she said.
Kelly said she first became aware of the issue several years ago, when she met the family of Kira Johnson, a Black mother who died after the birth of her second child from obstetrical bleeding — one of the most common causes of maternal death in the U.S.
"I'll never forget, her [older] son walked in and saw a picture of his mother on the screen. And he said, 'There's Mommy.' And that just got to me," Kelly said. "What a heartbreak."
As the rate of maternal deaths in the U.S. has ticked upward, so has the incidence of "severe maternal morbidity," according to the CDC. Each year, an estimated 50,000 women experience dangerous, even life-threatening health complications.
Jessica Davenport-Williams, a mother in Chicago, said that, after giving birth the first time, she hemorrhaged severely and had to receive blood transfusions. She was pregnant with her second daughter around the time Serena Williams and Beyoncé were in the news because of their own serious childbirth complications.
So she advocated for herself before her next delivery.
"I wanted to make sure that every physician was well aware of my history, that they documented information in my file that would be transferred to the hospital. And I was met with resistance," she said. "They didn't feel that it was necessary. I had to push for several appointments for that to happen."
After her second daughter was born via cesarean section, Davenport-Williams hemorrhaged again.
"It became an emergency situation," she said. "It just reminded me that I could have been one of those cases … that I [almost] didn't make it."
"I don't know if I will see the change for myself, in my lifetime," she said. "But I definitely don't want my daughters to have the same story or experiences that many before them have had."
While extending Medicaid coverage is an important first step, efforts to prevent maternal death can't stop there, Tabb Dina said.
Healthcare providers need to be educated about racial inequities in medicine, she said. Screening all pregnant and postpartum women for mental illness and making sure they get treatment will also help save lives.
And more patients with experience need a seat at the table in policy discussions, she said.
"We need to understand the real lived stories of our 'near misses,'" Tabb Dina said. "What were their barriers? What were their complications?"
And then ask: What more needs to change so no child has to grow up without a mother whose death could have been prevented?
The new head of the federal agency that oversees health benefits for nearly 150 million Americans and $1 trillion in federal spending said in one of her first interviews that her top priorities will be broadening insurance coverage and ensuring health equity.
"We've seen through the pandemic what happens when people don't have health insurance and how important it is," said Chiquita Brooks-LaSure, who was confirmed by the Senate to lead the Centers for Medicare & Medicaid Services on May 25 and sworn in on May 27. "Our focus is going to be on making sure regulations and policies are going to be focused on improving coverage."
It is an abrupt switch from the Trump administration, which steered the agency to spearhead efforts to repeal the Affordable Care Act and scale back Medicaid, the federal-state program for those with low incomes.
Brooks-LaSure, whose agency oversees the ACA marketplaces in addition to Medicare, Medicaid and the Children's Health Insurance Program, said she is not surprised at the robust takeup of ACA insurance since President Joe Biden reopened enrollment in January. The administration announced last month that more than 1 million people had signed up already.
"Over the last couple of years, I've worked with a lot of the state-based marketplaces and we could see the difference in enrollment when the states were actively pushing coverage," she said. A former congressional and Obama administration health staffer, Brooks-LaSure most recently was managing director at the consulting firm Manatt Health. "I believe that most people who are not enrolled want" coverage but may not understand it's available or how to get it, she said. "It's about knowledge and affordability."
Brooks-LaSure also suggested the administration would support efforts in Congress to ensure coverage for the millions of Americans in the so-called Medicaid gap. Those are people in the dozen states that have not expanded Medicaid under the Affordable Care Act who earn too little to qualify for ACA marketplace coverage. Georgia Democratic Sens. Jon Ossoff and Raphael Warnock, whose GOP-led state has not expanded the program, are calling for a new federal program to cover those who fall in the gap.
Brooks-LaSure said she would prefer states use the additional incentive funding provided in the recent American Rescue Plan toward expanding their Medicaid programs, "because ideally states are able to craft policies in their own states; they're closest to the ground." But if states fail to take up the offer — none have so far — "the public option or other coverage certainly would be a strategy to make sure people in those states have coverage," she said.
Also close on her radar is dealing with the impending insolvency of the trust fund that finances a large part of the Medicare program. Last year's economic downturn and the resulting loss in employees' withholding taxes is likely to accelerate the date when Medicare's hospital insurance program will not be able to cover all its bills.
Brooks-LaSure said she is sure she and Congress will be spending time on the issue in the coming year, but those discussions could also provide an opportunity for officials to reenvision the Medicare program and consider expanding benefits. Democrats in Congress are looking at both lowering Medicare's eligibility age and adding benefits the program lacks, including dental, hearing and vision coverage.
"I hope that we, when we are looking at solvency, really focus on making sure we keep the Medicare program robust," said Brooks-LaSure. "And that may mean some changes that strengthen the program."
California Attorney General Rob Bonta, a longtime Democratic state lawmaker, comes to his new role well known for pursuing an unabashedly progressive agenda on criminal justice issues. He has pushed for legislation to eliminate cash bail and to ban for-profit prisons and detention centers. But Bonta also has a distinctive record on healthcare, successfully advancing legislation to protect consumers from so-called surprise medical bills when they inadvertently get treatment from out-of-network providers and framing environmental hazards like pollution as issues of social justice.
He was among the Democratic lawmakers leading the charge at the California Capitol to take on Big Soda, pushing to cut consumption of sugary drinks through taxes and warning labels. Such proposals so far have faltered under the influence of the soda industry.
Bonta, 49, was an infant when his family, in 1971, moved to California from the Philippines, where his parents worked as missionaries. His father, Warren Bonta, a native Californian, worked for the state for decades as a healthcare official, setting up clinics to expand access to medical care in rural and refugee communities. Rob Bonta's first elected position was to the Alameda Healthcare District, overseeing local medical services.
Appointed by Gov. Gavin Newsom this year, Bonta in April succeeded former state Attorney General Xavier Becerra, who was tapped by President Joe Biden to serve as secretary of the U.S. Department of Health and Human Services. In the weeks since, Bonta has beefed up the number of lawyers working in the Department of Justice's Bureau of Environmental Justice and has created a Racial Justice Bureau that he said will play a pivotal role in ensuring equal access to healthcare for Black and Latino residents.
A graduate of Yale Law School, Bonta spent nine years as a deputy city attorney in San Francisco before his election to the state Assembly in 2012, representing Oakland and the East Bay. He was the first Filipino American elected to the California legislature, and is now the first Filipino American to serve as the state's chief law enforcement officer.
As attorney general, Bonta said he envisions a far different relationship with the Biden administration than his predecessor had with the Trump administration. Becerra emerged as one of former President Donald Trump's fiercest critics during his tenure as the state's top cop, filing more than 120 lawsuits to oppose Trump administration policies on the environment and healthcare, including leading the ongoing fight to preserve the Affordable Care Act in its case before the U.S. Supreme Court. Vice President Kamala Harris also once served as California's attorney general, and Bonta said he sees tremendous opportunity to shape a more progressive agenda on issues such as reproductive health and universal, single-payer healthcare working in concert with the new administration.
Bonta spoke with KHN about how healthcare would shape his agenda as attorney general. The interview has been edited for length and clarity.
Q: Your predecessor made healthcare a priority. Will it be one of yours?
It's going to be a top priority for me, and it was a top priority for me as a legislator. I was chair of the Assembly Health Committee or a health committee member the entire time I was there, almost nine years. Before that, I was on a healthcare district board. My very first elected office I ever had was making sure we provided true access to high-quality, affordable healthcare to the community that I served.
This is a really foundational part of who I am, and who my family is — our legacy and our values and what we stood for. I think healthcare is a right, not a privilege. It's for all, not the few.
Q: You've said you would make racial justice a priority. Do you believe racism is a public health crisis?
Yes, I do. COVID-19 revealed a lot of what was inequitable and racist about our systems — the disparate impacts that we saw, the inequity that we saw. And I think racism is not just a public health crisis — it is a public health crisis — but it also infects our economic system, it infects our criminal justice system, it infects all of our systems. And it has led to a public health crisis.
Q: What does that look like in healthcare? How does inequity show up?
It looks like making sure that in healthcare there aren't disparate impacts on communities of color. That race is not correlated to less access or less quality, and making sure that no one is left out. That can look like access to reproductive healthcare; that can look like access to real health insurance as opposed to sham health insurance plans. It can look like a charge that is inappropriately placed on a vaccine — vaccines are supposed to be free. That's something else we worked on recently.
Q: Can you elaborate?
Through a joint investigation with U.S. Health and Human Services, as well as the U.S. attorney's office, we identified that vaccines — which should be provided to individuals for free under the law — that a charge was being placed on the vaccine.
The vaccine should be universally accessible. And when that isn't being done, barriers are being put up in vulnerable communities, keeping people from their vaccine that we all need right now. That is a problem. We put out an alert and reminded people of the laws that provide free vaccines to all individuals under the Centers for Disease Control and Prevention program.
Q: What areas of environmental health might you look into?
The building of huge warehouses. In the Inland Empire, there are quite a few being built. They're being built adjacent to or in disadvantaged communities. And all the goods movement activity — and all of the emissions that are created from the goods movement — create a threat, and a risk to those communities.
Q: Like Amazon, for instance? The corporation has come under scrutiny for environmental harms associated with its sprawling warehouses.
Yeah. These warehouses have really created problems for disadvantaged communities in California. We expanded the Bureau of Environmental Justice to provide more resources and more ability to go after big polluters, and to protect communities that live at the intersection of poverty and pollution who are being forced to drink dirty water and breathe unhealthy air.
I see the role of the attorney general as standing up for everyday people who are abused or hurt and neglected or mistreated, and generally protecting the little guy from the overreach and abuse of power of the big guy.
We have more authority in the environmental realm than in many other areas. And we want to use those tools — that authority, that influence, that power — to protect communities, often low-income communities, often communities of color, who are being hurt by polluters.
Q: Becerra filed a lawsuit and sponsored legislation going after health industry mergers alleged to be anti-competitive, a practice he argues drives up healthcare prices. Will you continue to go after anti-competitive practices in healthcare?
That's definitely a priority. That's a critical tool in the toolbox that the California attorney general uniquely has to approve — or put conditions on, or not approve — proposed mergers involving a nonprofit hospital.
The lens to see that through is: How does it impact patients? How does it impact access to quality care, and cost of care? And so that is exactly why the attorney general has that role, to review these proposed mergers with an eye towards patients and communities that don't necessarily have a voice in the merger.
Q: As attorney general, do you support single-payer healthcare?
My involvement will be different. Having said that, I co-authored the single-payer bill from a few years back. And I was a co-author of this year's single-payer bill that Assemblyman Ash Kalra was leading that I think is no longer moving. [Kalra has withdrawn the bill from consideration for this year.]
I support single-payer healthcare. I support universal healthcare. I think single-payer healthcare is a way to get to that aspiration.
As the attorney general, I enforce the law. We don't have a single-payer law in California. So, I'll enforce the existing laws, which are very strong, to help make sure Californians have the most accessible, affordable, highest-quality healthcare.
Q: The U.S. Supreme Court has agreed to hear a Mississippi abortion case that some say could threaten abortion rights at the state level. If upheld, how could that affect the abortion protections in California?
That's going to be a really important case for reproductive freedom, and important, in my view, for California to be involved in given our leadership in this space. As the case gets briefed and prepped for consideration and argument before the U.S. Supreme Court, I expect we will be very active in making arguments to the court to help guide [the justices'] thinking and their decisions.
Q: What will California's relationship with the federal government be like?
I think the posture and the relationship between the federal administration and California over the last four years are very different than what they will be for the next four.
Attorney General Becerra was the warrior and the champion that we needed, and that was necessary as we faced a full-frontal assault on California, our people, our values and our resources, and he fought back and protected us and defended us and stood up for our values time and time again.
Now, I think we have a Biden-Harris administration that largely does agree that we should have, certainly, the Affordable Care Act, that we should have reproductive freedom, that we should address the inequities in our healthcare system, that we should have affordable, accessible, high-quality healthcare for all — and will help us get there.
So, with the new administration, I look to collaboration. California can and should continue to be who we are. We lead. We go first. We pioneer. We're bold and we're big in how we think. That's who we are, so that leading role is our natural place to be, including in healthcare.
When the pandemic sidelined in-office visits at his practice, Dr. Dael Waxman "wasn't exactly thrilled with being at home." But he quickly shifted gears to video and telephone appointments.
Now, he finds, there are good reasons to keep these options open even as in-office visits have resumed and many parts of the country have sharply loosened coronavirus restrictions.
One is that some patients "have to overcome a lot of obstacles to get to me," said Waxman, a family physician with Atrium Health in Charlotte, North Carolina. "I have lots of single mothers. They have to leave work, get their kids out of school and then take two buses. Why would they want to do that if they don't have to?"
Telehealth served as a lifeline for many during the pandemic, ramping up from a minority share of office visits to a majority, at least for a while. Still, it cannot replace hands-on care for some conditions, and for those not blessed with speedy broadband internet service or smart devices it can be difficult or impossible to use.
As things head toward a new normal, lawmakers and insurers, including Medicare, are debating how to proceed, the biggest question being whether to continue reimbursing providers at the same payment rate as for in-person coverage once the COVID public health emergency end.
While that debate rages — one side pointing to the costs associated with setting up such services, the other arguing that payment rates should decline because telehealth services are cheaper to provide — patients are left to decide if such visits meet their needs.
KHN put such questions to physicians, who gave tips on the types of concerns that are best handled in person, and when video visits are most useful. Not surprisingly, they recommended that patients ask their provider which type of visit is most appropriate for their particular circumstance.
Four additional things we learned:
1. Some things just need to be done in person.
Chest pains, new shortness of breath, abdominal pain, new or increased swelling in the legs — all those things point to the need for an in-person visit. And, of course, blood tests, vaccinations and imaging scans must be done in person.
"If your blood pressure is really high or you have some symptoms of concern like chest pain, one needs to go to the office," said Dr. Ada Stewart, president of the American Academy of Family Physicians, which posted an online guide for telemedicine visits.
If patients are concerned enough about the situation that they are considering going to an urgent care clinic or even an emergency room, "they should be seen," said Waxman. And that would occur in person.
If a condition, even something seemingly simple, hasn't resolved in a reasonable time, go to the office. Waxman recalled a patient with an eye issue who went to urgent care and received antibiotics, but the eye was still irritated after treatment.
"Because it had not resolved, I was worried about shingles of the eye," he said. It turned out not to be shingles, but a different problem, Waxman learned after referring the patient to an ophthalmologist.
In-person visits can also prove more productive because a physician gains visual clues to what might be wrong by watching how a patient walks, sits or speaks.
While video visits are wonderful, said Dr. David Anderson, a cardiologist affiliated with Stanford Health Care in Oakland, California, sometimes things come up in person that might not over video.
"I can't say how many times I sit with a patient and I think we're done — then the thing that's really the problem gets brought up and we spend the next 45 minutes on it," he said.
Finally, a good reason to go in is, simply, if that's what you prefer.
"I had a patient the other day who said he could have done a phone visit but was old-school and just preferred being in the office," Waxman said.
2. Sometimes a televisit is better.
It's not always necessary to trek into a medical office or clinic.
Stewart, at the family physician group, said check-ins for chronic conditions, such as diabetes or hypertension, "that are basically under control" can easily be handled remotely.
Cardiologist Anderson concurred, especially for periodic assessments or checking how a patient is handling a new medication.
"If I have a [stable] 82-year-old patient and her daughter needs to miss work and come from 30 miles away to bring Mom in for us to sit there for 15 minutes to chat, that's something where the efficiency of a video visit is good," he said. But if that same patient complains that "when they take a morning walk, they are short of breath and they were not before, that person I would want to see face to face."
And, sometimes, video follow-ups for stable patients with chronic illnesses are preferable. "On the phone or by video, I found there to be a lot more non-distracted time for education," he said.
It is helpful if patients can monitor their blood sugar or blood pressure at home and then report their statistics during the televisit.
But some patients cannot afford a home blood pressure monitor, so that can be a limitation, Waxman cautioned. And even those who have a monitor should initially take it into the office to make sure it is accurate, he said.
Some dermatologic conditions — think rashes and such — can be handled by video, so long as the patient is comfortable using the camera on their smartphone or computer tablet and can get a good picture of the problem area. While 70% to 80% of skin issues can start with a video visit, he estimated, the rest require in-person evaluation, perhaps even a biopsy.
3. Everything works better when both sides prepare.
Both patients and providers can get the most out of a video visit if they first take a few simple steps, the experts said.
Find a quiet place without distractions. Turn off the TV. Have a family member present if you want a second set of ears, but choose a private setting if you don't.
"You will not believe the circumstances where people Zoom in to me," said Anderson.
Some are in their cars, "maybe because that's the best place where they get internet service," or they're in their pajamas, just finishing breakfast.
"There's a whole lack of preparation and seriousness that occurs," he said.
Have a list of medications you're taking and write down the problem or symptoms you wish to discuss, as well as specific questions you have, to make the most out of the time available, advised Stewart.
Providers, too, need to take steps.
Anderson said they should read patients' medical records ahead of time and focus because there are fewer cues to a patient's concerns over video than in person.
Physicians "have to be doubly vigilant," Anderson said, pay attention to all their suspicions and be extra thorough because "it would be much easier to miss something important."
4. What might happen next?
Some advocates say insurers should make sure that their reimbursement policies don't favor one type of visit over another and that no patient feels pressured into a televisit.
During the COVID emergency, Congress and the agency that oversees Medicare temporarily made it easier for beneficiaries to use telehealth — for instance, by removing geographic restrictions and allowing audio-only visits in some circumstances. Medicare also began reimbursing providers equally for telehealth and in-person care.
Many private insurers followed Medicare's lead; some also voluntarily waived cost-sharing requirements for telehealth patients.
Many expect Medicare Advantage plans to keep covering televisits once the emergency is officially over, and traditional Medicare could follow suit. The Medicare Payment Advisory Commission, a nonpartisan agency that advises Congress, has recommended temporarily continuing to cover some services while the agency gathers data about a wide range of effects, including concerns that telehealth raises spending and the advantages it may offer.
That data is important, said Fred Riccardi, president of the Medicare Rights Center. The expansion has helped many Medicare beneficiaries, he added, but "has left some communities behind," including the oldest adults, those with disabilities and those in areas with spotty internet service. And future policies should ensure that patients who prefer in-person visits can continue them, he said.
Anderson, the cardiologist, agreed that televisits "have a wonderful place" in the range of options, but he warned against cost-saving measures by insurers that might require patients to have a video visit before being granted coverage for an office visit.
"I would see that as an unfortunate delay in care," he said.
With nearly 600,000 in the U.S. lost to COVID-19 — now a leading cause of death — researchers estimate that more than 5 million Americans are in mourning.
This article was published on Wednesday, June 2, 2021 in Kaiser Health News.
Cassandra Rollins' daughter was still conscious when the ambulance took her away.
Shalondra Rollins, 38, was struggling to breathe as COVID overwhelmed her lungs. But before the doors closed, she asked for her cellphone, so she could call her family from the hospital.
It was April 7, 2020 — the last time Rollins would see her daughter or hear her voice.
The hospital rang an hour later to say she was gone. A chaplain later told Rollins that Shalondra had died on a gurney in the hallway. Rollins was left to break the news to Shalondra's children, ages 13 and 15.
More than a year later, Rollins said, the grief is unrelenting.
Rollins has suffered panic attacks and depression that make it hard to get out of bed. She often startles when the phone rings, fearing that someone else is hurt or dead. If her other daughters don't pick up when she calls, Rollins phones their neighbors to check on them.
"You would think that as time passes it would get better," said Rollins, 57, of Jackson, Mississippi. "Sometimes, it is even harder. … This wound right here, time don't heal it."
The pandemic — and the political battles and economic devastation that have accompanied it — have inflicted unique forms of torment on mourners, making it harder to move ahead with their lives than with a typical loss, said sociologist Holly Prigerson, co-director of the Cornell Center for Research on End-of-Life Care.
The scale and complexity of pandemic-related grief have created a public health burden that could deplete Americans' physical and mental health for years, leading to more depression, substance misuse, suicidal thinking, sleep disturbances, heart disease, cancer, high blood pressure and impaired immune function.
"Unequivocally, grief is a public health issue," said Prigerson, who lost her mother to COVID in January. "You could call it the grief pandemic."
Like many other mourners, Rollins has struggled with feelings of guilt, regret and helplessness — for the loss of her daughter as well as Rollins' only son, Tyler, who died by suicide seven months earlier.
"I was there to see my mom close her eyes and leave this world," said Rollins, who was first interviewed by KHN a year ago in a story about COVID's disproportionate effects on communities of color. "The hardest part is that my kids died alone. If it weren't for this COVID, I could have been right there with her" in the ambulance and emergency room. "I could have held her hand."
The pandemic has prevented many families from gathering and holding funerals, even after deaths caused by conditions other than COVID. Prigerson's research shows that families of patients who die in hospital intensive care units are seven times more likely to develop post-traumatic stress disorder than loved ones of people who die in home hospice.
The polarized political climate has even pitted some family members against one another, with some insisting that the pandemic is a hoax and that loved ones must have died from influenza, rather than COVID. People in grief say they're angry at relatives, neighbors and fellow Americans who failed to take the coronavirus seriously, or who still don't appreciate how many people have suffered.
"People holler about not being able to have a birthday party," Rollins said. "We couldn't even have a funeral."
Indeed, the optimism generated by vaccines and falling infection rates has blinded many Americans to the deep sorrow and depression of those around them. Some mourners say they will continue wearing their face masks — even in places where mandates have been removed — as a memorial to those lost.
"People say, 'I can't wait until life gets back to normal,'" said Heidi Diaz Goff, 30, of the Los Angeles area, who lost her 72-year-old father to COVID. "My life will never be normal again."
Many of those grieving say celebrating the end of the pandemic feels not just premature, but insulting to their loved ones' memories.
"Grief is invisible in many ways," said Tashel Bordere, a University of Missouri assistant professor of human development and family science who studies bereavement, particularly in the Black community. "When a loss is invisible and people can't see it, they may not say 'I'm sorry for your loss,' because they don't know it's occurred."
Communities of color, which have experienced disproportionately higher rates of death and job loss from COVID, are now carrying a heavier burden.
Black children are more likely than white children to lose a parent to COVID. Even before the pandemic, the combination of higher infant and maternal mortality rates, a greater incidence of chronic disease and shorter life expectancies made Black people more likely than others to be grieving a close family member at any point in their lives.
Rollins said everyone she knows has lost someone to COVID.
"You wake up every morning, and it's another day they're not here," Rollins said. "You go to bed at night, and it's the same thing."
A Lifetime of Loss
Rollins has been battered by hardships and loss since childhood.
She was the youngest of 11 children raised in the segregated South. Rollins was 5 years old when her older sister Cora, whom she called "Coral," was stabbed to death at a nightclub, according to news reports. Although Cora's husband was charged with murder, he was set free after a mistrial.
Rollins gave birth to Shalondra at age 17, and the two were especially close. "We grew up together," Rollins said.
Just a few months after Shalondra was born, Rollins' older sister Christine was fatally shot during an argument with another woman. Rollins and her mother helped raise two of the children Christine left behind.
Heartbreak is all too common in the Black community, Bordere said. The accumulated trauma — from violence to chronic illness and racial discrimination — can have a weathering effect, making it harder for people to recover.
"It's hard to recover from any one experience, because every day there is another loss," Bordere said. "Grief impacts our ability to think. It impacts our energy levels. Grief doesn't just show up in tears. It shows up in fatigue, in working less."
Rollins hoped her children would overcome the obstacles of growing up Black in Mississippi. Shalondra earned an associate's degree in early childhood education and loved her job as an assistant teacher to kids with special needs. Shalondra, who had been a second mother to her younger siblings, also adopted a cousin's stepdaughter after the child's mother died, raising the girl alongside her two children.
Rollins' son, Tyler, enlisted in the Army after high school, hoping to follow in the footsteps of other men in the family who had military careers.
Yet the hardest losses of Rollins' life were still to come. In 2019, Tyler killed himself at age 20, leaving behind a wife and unborn child.
"When you see two Army men walking up to your door," Rollins said, "that's unexplainable."
Tyler's daughter was born the day Shalondra died.
"They called to tell me the baby was born, and I had to tell them about Shalondra," Rollins said. "I don't know how to celebrate."
Shalondra's death from COVID changed her daughters' lives in multiple ways.
The girls lost their mother, but also the routines that might help mourners adjust to a catastrophic loss. The girls moved in with their grandmother, who lives in their school district. But they have not set foot in a classroom for more than a year, spending their days in virtual school, rather than with friends.
Shalondra's death eroded their financial security as well, by taking away her income. Rollins, who worked as a substitute teacher before the pandemic, hasn't had a job since local schools shut down. She owns her own home and receives unemployment insurance, she said, but money is tight.
Makalin Odie, 14, said her mother, as a teacher, would have made online learning easier. "It would be very different with my mom here."
The girls especially miss their mom on holidays.
"My mom always loved birthdays," said Alana Odie, 16. "I know that if my mom were here my 16th birthday would have been really special."
Asked what she loved most about her mother, Alana replied, "I miss everything about her."
Grief Complicated by Illness
The trauma also has taken a toll on Alana and Makalin's health. Both teens have begun taking medications for high blood pressure. Alana has been on diabetes medication since before her mom died.
Mental and physical health problems are common after a major loss. "The mental health consequences of the pandemic are real," Prigerson said. "There are going to be all sorts of ripple effects."
The stress of losing a loved one to COVID increases the risk for prolonged grief disorder, also known as complicated grief, which can lead to serious illness, increase the risk of domestic violence and steer marriages and relationships to fall apart, said Ashton Verdery, an associate professor of sociology and demography at Penn State.
Grief can lead to "broken-heart syndrome," a temporary condition in which the heart's main pumping chamber changes shape, affecting its ability to pump blood effectively, Verdery said.
From final farewells to funerals, the pandemic has robbed mourners of nearly everything that helps people cope with catastrophic loss, while piling on additional insults, said the Rev. Alicia Parker, minister of comfort at New Covenant Church of Philadelphia.
"It may be harder for them for many years to come," Parker said. "We don't know the fallout yet, because we are still in the middle of it."
Rollins said she would have liked to arrange a big funeral for Shalondra. Because of restrictions on social gatherings, the family held a small graveside service instead.
Funerals are important cultural traditions, allowing loved ones to give and receive support for a shared loss, Parker said.
"When someone dies, people bring food for you, they talk about your loved one, the pastor may come to the house," Parker said. "People come from out of town. What happens when people can't come to your home and people can't support you? Calling on the phone is not the same."
While many people are afraid to acknowledge depression, because of the stigma of mental illness, mourners know they can cry and wail at a funeral without being judged, Parker said.
"What happens in the African American house stays in the house," Parker said. "There's a lot of things we don't talk about or share about."
Funerals play an important psychological role in helping mourners process their loss, Bordere said. The ritual helps mourners move from denying that a loved one is gone to accepting "a new normal in which they will continue their life in the physical absence of the cared-about person." In many cases, death from COVID comes suddenly, depriving people of a chance to mentally prepare for loss. While some families were able to talk to loved ones through FaceTime or similar technologies, many others were unable to say goodbye.
Funerals and burial rites are especially important in the Black community and others that have been marginalized, Bordere said.
"You spare no expense at a Black funeral," Bordere said. "The broader culture may have devalued this person, but the funeral validates this person's worth in a society that constantly tries to dehumanize them."
In the early days of the pandemic, funeral directors afraid of spreading the coronavirus did not allow families to provide clothing for their loved ones' burials, Parker said. So beloved parents and grandparents were buried in whatever they died in, such as undershirts or hospital gowns.
"They bag them and double-bag them and put them in the ground," Parker said. "It is an indignity."
Coping With Loss
Every day, something reminds Rollins of her losses.
April brought the first anniversary of Shalondra's death. May brought Teacher Appreciation Week.
Yet Rollins said the memory of her children keeps her going.
When she begins to cry and thinks she will never stop, one thought pulls her from the darkness: "I know they would want me to be happy. I try to live on that."