SACRAMENTO — In spite of a pandemic that has killed about 62,000 Californians — more than enough to pack Dodger Stadium — Gov. Gavin Newsom has again declined to boost the budgets of the state's underfunded and understaffed local public health departments.
Local public health officials, responsible for steering the state's COVID-19 response, had asked the Democratic governor for $200 million per year for the nuts and bolts of public health, starting in the 2021-22 budget year, which kicks off July 1.
But Newsom did not grant their request in his $268 billion budget proposal released Friday, despite a projected budget surplus of $76 billion. If Newsom does not change his mind before the budget is finalized, this would mark the third consecutive year he has denied funding requests to help rebuild California's devastated public health infrastructure and workforce, threatening the state's ability to control COVID and prepare for future threats, public health experts say.
"We're extremely dismayed and disappointed," said Michelle Gibbons, executive director of the County Health Executives Association of California. "We can't wait until the next pandemic or public health crisis to start thinking about funding public health. We have to do it now."
California's 61 local public health departments are responsible for keeping their communities safe but, throughout the pandemic, city and county public health leaders had to abandon fundamental public health functions, such as contact tracing, communicable disease testing and enforcement of public health orders because they do not have enough staffing or resources.
Last year, in the thick of the crisis, Newsom said the state couldn't afford to boost local public health budgets. California was staring down a projected $54 billion deficit that required the governor to retreat on his biggest healthcare ambitions.
But the unexpected surplus projected by the Newsom administration this year — fueled primarily by surging tax revenues — is allowing the first-term Democrat to dream big again. Newsom wants to expand the state's Medicaid program for low-income people, called Medi-Cal, to income-eligible unauthorized immigrants age 60 and up, at a cost of $1 billion in the first year. He proposes to spend $7 billion to convert hotel rooms into permanent housing for homeless people. He's calling for new mental health and substance misuse services for kids and teens in schools. And he is spearheading a major transformation of Medi-Cal to expand behavioral health treatment and social services, such as food and housing assistance, for homeless, formerly incarcerated and other medically vulnerable people.
The federal government provides the lion's share of public health funding in California, and Newsom's budget would use tens of billions in additional federal COVID relief money to support state and local public health agencies. But healthcare leaders say federal spending does not sufficiently support ongoing public health infrastructure needs such as staff compensation and data collection systems.
"You need strong public health and you need a strong healthcare system, and to think that you can invest in one to the exclusion of the other is just foolhardy," said Dr. Kirsten Bibbins-Domingo, chair of the department of epidemiology and biostatistics at the University of California-San Francisco.
Public health leaders say an infusion of $200 million annually could help fund long-term staff positions including nurses and epidemiologists, pay for new public health laboratories — the state has lost 11 since 1999 — and rebuild obsolete data systems that have crashed, a problem that officials say has cost lives during the pandemic.
Asked why he did not provide the funding in his budget blueprint, Newsom pointed to proposed investments in other healthcare programs, such as his transformation of Medi-Cal, expected to cost $1.5 billion per year, and $300 million for public hospitals.
"I hope folks celebrate that," said Newsom, who will likely face a Republican-driven recall election this year. He added that his budget proposal is simply a starting point for negotiations with state lawmakers that will continue over the coming weeks. The legislature has until June 15 to send a revised budget proposal to him for approval.
But state Democratic lawmakers, who control both houses of the legislature, don't think Newsom's proposed investments in Medi-Cal and public hospitals are enough. For the first time, the leaders of the Senate and Assembly and the chairs of the health committees in both houses are publicly calling on the governor to invest in local public health departments, too.
"We know how difficult the past year has been for public health officers and our county public health staff," said Senate President Pro Tempore Toni Atkins. "Their commitment is tireless, and they've gone above and beyond in their efforts to protect our health and safety during the pandemic."
Assembly member Jim Wood, who chairs the Assembly Health Committee, said he would personally lobby Newsom.
"Unknown to the average Californian, there has been an ongoing erosion of funding for local public health departments," Wood said. "California has let its guard down and made us all susceptible and vulnerable to future health threats."
Without additional money, lawmakers fear, the state will fall further behind on controlling communicable diseases like measles and tuberculosis, and chronic diseases like heart disease and diabetes.
"We can do more," said state Sen. Sydney Kamlager (D-Los Angeles), who is calling for a "long-overdue reckoning."
"An ongoing $200 million investment will not only help heal and restore a public health system left shaken from the devastating COVID-19 pandemic but is essential in preparing for the crises that are already here, like the sexually transmitted infections epidemic and the ones to come," she said.
State Health and Human Services Secretary Dr. Mark Ghaly said the Newsom administration is eyeing "ongoing funding" for local health departments, but not until next year. He pointed to $3 million in the governor's current spending plan that would identify the public health system's long-term needs and assess "lessons learned" from the coronavirus pandemic.
Assembly member Phil Ting (D-San Francisco), who chairs the Assembly Budget Committee, agreed that a detailed inventory of the state's public health needs is critical.
"We definitely need to make an investment in public health infrastructure," Ting said. "But what counties seem to want is a blank check."
Newsom is expected to face intense lobbying on public health and other healthcare proposals. Some lawmakers want Newsom to expand Medi-Cal eligibility to all unauthorized immigrants in California, an expensive proposition that the nonpartisan Legislative Analyst's Office says could cost $2.4 billion per year. Newsom also faces pressure to go bigger on mental health and homelessness, and to increase state-based financial assistance for people purchasing health coverage through the Covered California health insurance exchange.
"This is not just about providing some justice to public health and essential workers who have struggled throughout the pandemic, but about making a healthcare system that is stronger with everyone included," said Anthony Wright, executive director of the nonprofit advocacy group Health Access California.
Black Americans’ COVID-19 vaccination rates are still lagging months into the nation’s campaign, while Hispanics are closing the gap and Native Americans show the highest rates overall, according to federal data obtained by KHN.
The data, provided by the Centers for Disease Control and Prevention in response to a public records request, gives a sweeping national look at the race and ethnicity of vaccinated people on a state-by-state basis. Yet nearly half of those vaccination records are missing race or ethnicity information.
KHN’s analysis shows that only 22% of Black Americans have gotten a shot, and Black rates still trail those of whites in almost every state.
Targeted efforts have raised vaccination rates among other minority groups. Hispanics in eight states, the District of Columbia and Puerto Rico are now vaccinated at higher rates than non-Hispanic whites. Yet 29% of Hispanics are vaccinated nationally, compared with 33% of whites.
While 45% of Native Americans have received at least one dose, stark differences exist depending on where they live. And Asian vaccination rates are high in most states, with 41% getting a shot.
The analysis underscores how vaccine disparities have improved as availability has opened up and Biden administration officials have attempted to prioritize equitable distribution. Still, gaps persist even as minority groups have suffered much higher mortality rates from the pandemic than whites and are at risk of infection as states move to reopen and lift mask mandates.
Despite these lingering gaps, the CDC said last week that those who are fully vaccinated don’t need to wear masks in most indoor and outdoor settings or physically distance. Only 38% of Americans are fully vaccinated.
"Every day we do not reach a person or a community is a day in which there is a preventable COVID case that happens and a preventable COVID death in these communities," said Dr. Kirsten Bibbins-Domingo, chair of the Department of Epidemiology and Biostatistics at the University of California-San Francisco.
KHN requested race and ethnicity data from the CDC on people who have received at least one dose of a COVID vaccine since mid-December for all 50 states, the District of Columbia and Puerto Rico. The data covers shots as of May 14 given to 155 million people that were administered through federally run programs and federal agencies as well as by state and local authorities.
Eight states — Alabama, California, Michigan, Minnesota, South Dakota, Texas, Vermont and Wyoming — either refuse to provide race and ethnicity details to the CDC or are missing that information for more than 60% of people vaccinated. Those states are excluded from the KHN analysis, though the CDC includes all but Texas in its published national rates.
Some states display race and ethnicity for vaccine recipients separately, making it difficult to compare rates for Hispanics to non-Hispanic whites, for example. But the CDC data allows for direct comparisons. It reports numbers for Hispanics, who can be of any race or combination of races, as well as numbers for non-Hispanic people of single-race or multiracial categories.
The data for Native Hawaiians and other Pacific Islanders is unreliable, making it difficult to draw conclusions on the vaccination rate in that population.
Dr. Georges Benjamin, executive director of the American Public Health Association, wasn’t surprised that Black Americans’ vaccination rates were still lagging, citing a complex combination of access issues, hesitancy and structural inequity.
Benjamin pointed to the early challenges in securing an appointment online and the initial placement of vaccination sites — which he noted the Biden administration had worked to improve.
"We’re going to be judged whether or not we did it equitably at the end of the day," he said. "Right now, I still think we’re failing."
Dr. Utibe Essien, a health equity researcher and assistant professor of medicine at the University of Pittsburgh, stressed that targeted outreach must involve multiple institutions in a community.
"It’s not just the Black doctor, it’s not just the barber, it’s not just the pastor, kind of these traditional folks who have been the big messengers. We have to be broad," he said. "It’s investing in folks who know the neighborhood, the small-store owner who gets to see all the 12- to 15-year-old kids come through the store getting snacks before they head off to school."
Why Native Americans Lead in Vaccinations
Nationally, Native Americans and Alaska Natives have been vaccinated at significantly higher rates than other groups. Tribes administered doses quickly, prioritizing elders with culturally important knowledge, said Meredith Raimondi, director of congressional relations and public policy for the National Council of Urban Indian Health. The rollout was imbued with urgency: Native Americans have died of COVID at more than double the rate of white Americans, according to the latest CDC data.
Native vaccination rates are higher than white rates in 28 states, including New Mexico, Arizona and Alaska, where many receive care from tribal health centers and the Indian Health Service. In states such as South Carolina and Tennessee, where IHS access is more limited and Native residents are more likely to live in urban areas, vaccination rates are far lower than for white residents.
Groups in those areas reported problems finding healthcare providers to administer shots. Tribal organizations compiled lists of retired nurses to tap for clinics. At one point, staffers from an Oklahoma City clinic for Native Americans offered to fly to Washington, D.C., to help vaccinate Indigenous people living around the nation’s capital, Raimondi said.
"It became an issue of, ‘Well, we could get you the vaccine, but we don’t know who is going to administer them,’" Raimondi said.
The council and Native American Lifelines, a nonprofit providing health services, partnered with the University of Maryland-Baltimore for a vaccination site exclusively for Native Americans living in Maryland, Virginia and Washington, D.C. It launched in April.
While the vaccination rates for Native Americans surpass those of whites in some states due in part to IHS, that infrastructure does not exist for Black Americans, said Rhonda BeLue, the department chair of health management policy at Saint Louis University.
At the beginning of the pandemic, people were shocked by how much more likely Black Americans were to die from COVID, she said.
"However, the same structural inequities that caused that disproportionate mortality in COVID are the same structural inequities that predated COVID and caused disproportionate burdens of morbidity and mortality," she said. "This isn’t new."
Easing Fears in Hispanic Communities
Some states are reporting higher vaccination rates among Hispanics than white and Black residents, which Bibbins-Domingo said fits with surveys showing high enthusiasm for vaccination among Hispanics. It also indicates that some of the reported barriers may have been addressed more effectively in those states, she said.
Paul Berry, chair of the Virginia Latino Advisory Board, partly attributes Virginia’s success to targeted outreach efforts. The state and certain counties also increased Spanish-language resources to boost sign-ups.
Connecting with every community cannot be an afterthought, said Diego Abente, president and CEO of St. Louis’ Casa de Salud, a healthcare provider focused on immigrant communities. Community buy-in, effective social media use and language programming from the start have been essential, he said. Hispanics have a higher vaccination rate than whites in Missouri.
But nationally, a dearth of transportation options, an inability to take off from work to get a vaccine, and concerns about documentation and privacy have dampened uptake among Hispanics, according to experts.
"To me it’s more about access to healthcare," Berry said. "If you don’t live close to healthcare, you’re just going to shrug it off immediately. ‘I can’t get that vaccination. I’m going to miss work.’"
To reduce fear among Idaho agricultural workers that may be part of mixed-immigration status families, public health workers emphasized messaging that documentation wouldn’t be required, said Monica Schoch-Spana, a senior scholar at Johns Hopkins Center for Health Security. She has helped lead its CommuniVax project seeking to boost uptake among Black, Hispanic and Indigenous communities.
It’s also important to engage trusted institutions to administer vaccines, Schoch-Spana said: "Is it a familiar place, does it feel safe, and is it easy to get to?"
Federal efforts have placed sites in underserved neighborhoods. About 60% of shots at the Federal Emergency Management Agency’s vaccination sites and at community health centers were given to people of color, federal health officials said this week.
Incomplete Data Collection
Race or ethnicity information is still missing for nearly 69 million vaccinated people — or 44% — in the CDC data, despite vows by federal officials to improve outdated systems to better inform their response.
CDC spokesperson Kate Fowlie said their efforts, including sharing strategies for capturing demographic data and reducing data gaps with state and local governments, have resulted in improvements in data collection. Officials are also planning to allow agencies to update previously submitted vaccine records. The true national rates by race or ethnicity group would each be higher with complete data.
Unlike the federal government, North Carolina made it nearly impossible for providers to submit vaccine data without recording race and ethnicity. As a result, it has the most complete demographic data of any state.
Adding that step was not an easy sell — providers and other vaccinators were initially resistant, said Kody Kinsley, the chief deputy secretary for health at the North Carolina health department. But it has paid off in the state’s ability to target its response to populations getting left behind, he said.
Bibbins-Domingo said the federal government and states need to make collecting this vaccination data by race mandatory, because data drives the response to the pandemic.
"The feds know how to do this. They do it every 10 years for the census," she said. "That we somehow cannot figure it out in public health data is quite simply unacceptable."
KHN reporter Victoria Knight contributed to this report.
Visit the Github repository to read more about and download the data.
The pressure is more intense now since the COVID pandemic cut traffic into dentists' offices. But while most dentists are ethical, the practice of going with more profitable procedures, materials or appliances is not new.
This article was published on Wednesday, May 19, 2021 in Kaiser Health News.
In 1993, Dr. David Silber, a dentist now practicing in Plano, Texas, was fired from the first dental clinic he worked for. He'd been assigned to a patient another dentist had scheduled for a crown preparation — a metal or porcelain cap for a broken or decayed tooth. However, Silber found nothing wrong with the tooth, so he sent the patient home.
He was fired later the same day. "Never send a patient away who's willing to pay the clinic money," he was told.
Silber said what happened to him then still happens today, that some dentists who don't think they receive enough from insurance reimbursement — whether private insurance or Medicaid — have figured out ways to boost their bottom lines. They push products and procedures a patient doesn't need or recommend higher-cost treatment plans when less expensive options might accomplish the same thing.
The pressure is more intense now since the COVID pandemic cut traffic into dentists' offices. But while most dentists are ethical, the practice of going with more profitable procedures, materials or appliances is not new. In 2013, a Washington dentist writing in an American Dental Association publication lamented a pattern of "creative diagnosis."A 2019 study of dental costs found wide differences in the price of certain services. It said teeth whitening at the dentist's office, for example, is no more effective than whitening strips one buys at the drugstore — and at least 10 times more expensive.
But sometimes dentists escalate to outright fraud. A recent article in the Journal of Insurance Fraud in America put it plainly: "Medicaid fraud is the most lucrative business model in U.S. dentistry today."
Indeed, the ADA sees a problem. Dr. Dave Preble, senior vice president of the American Dental Association's Practice Institute, said, "Hundreds of thousands of dental procedures are performed safely and effectively on a daily basis." But he cited a study from the National Healthcare Anti-Fraud Association that says between 3% and 10% of the $3.6 trillion Americans spend annually on healthcare is lost to fraud each year. That's as much as $13 billion of the $136 billion Americans spend annually on dental care lost to dental fraud.
Silber said he saw the X-rays of one patient after she'd seen another dentist and was shocked to learn she'd had two crowns put in when she needed only one minor filling. She was told the first crown was necessary to treat decay in one tooth, and the second crown was needed to make the first crown fit better. "She only needed one small filling. It should have cost her $100 or so," Silber said. "Instead, the dentist convinced her to replace two perfectly good teeth just so he could make $2,400 from her insurance company."
The absorption of small private practices by corporations, private-equity buyouts or group practices over the past two decades has increased the emphasis on higher profits. "The executive at the top tells the dentists working for them which procedures to push, like a chef tells their team of waiters to push the daily special," Silber said. "If a dentist refuses to comply, they're shown the door."
One treatment patients are commonly pressured to undergo in corporate dental chains is quadrant scaling: an invasive teeth-cleaning procedure along the gum line, usually done over three or four visits. While the procedure can be helpful if a patient suffers from severe gum disease, it can erode gum tissue that cannot grow back. Dentists can charge between $800 and $1,200 for each procedure, while a standard cleaning nets them only about $100.
Dr. Michael Davis, a dentist practicing in Santa Fe, New Mexico, said some dentists look for procedures for which Medicaid pays more. He explained that Medicaid pays three to six times more for nickel-chromium steel crowns than for standard fillings, so some dentists recommend those more profitable and invasive treatments to unsuspecting patients. "The fit of premanufactured steel crowns is unfavorable and can show gaps," Davis said, "so unethical dentists target little children who won't notice the misshapen fit until their permanent teeth come in."
Children who still have their baby teeth are prime targets for pulpotomies — the removal of the pulp of a tooth — whether they need them or not.
Unethical dentists also perform shortcut versions of otherwise covered procedures for a patient, while billing the insurer for the full amount — a practice known as upcoding.
Mini-implants, for example, can be easily upcoded. A standard dental implant is an artificial tooth root that dentists install to anchor a dental crown or bridge. A mini-implant, by contrast, is like "a thumbtack compared to a bolt," said Dr. David Weinman, a dentist practicing in Buffalo, New York. In the past, mini-implants were used only to hold dentures in place, but because they are so much quicker to install and cost the dentist as much as 60% less than a regular implant, more dentists have been recommending them as a long-term solution.
"We in the dental community see a high failure rate when mini-implants are used where a regular implant is needed," Weinman said, "but that hasn't stopped some dentists from pushing them on patients who don't know better."
Then there are horror stories of dentists gone bad. In March, Dr. Mouhab Rizkallah, a Massachusetts orthodontist, was sued by the state's attorney general for deliberately keeping his patients in braces longer than medically necessary and for deceptive billing for mouthguards. The complaint against him alleges he instructed his staff to buy plastic mouthguards at a discount store even though he knew they wouldn't fit the patients' teeth properly. Rizkallah then billed Medicaid $75 to $85 more than the retail price for each one and was reimbursed more than $1 million for the mouthguards alone, according to the lawsuit.
Other dental practitioners have done far worse. After a video of Dr. Seth Lookhart, an Alaska dentist, riding a hoverboard during a dental procedure went viral, intrigued authorities found he'd been sedating nearly all his patients to cash in on the reimbursements Medicaid pays for general anesthesia. He was sentenced last year to 12 years in prison.
The Texas Dental Board revoked the license of Bethaniel Jefferson, a dentist who was practicing in Houston, after she was found to be endangering her patients by needlessly administering general anesthesia to take advantage of the same insurance payments. She left one patient in an oxygen-deprived state for so long the child suffered severe brain damage.
Dr. Scott Charmoli, a Wisconsin dentist, was charged with fraud after he was found to be using his drill to intentionally break patients' teeth so he could bill the insurance company for crowns instead of fillings. The indictment alleges that he performed more than $2 million worth of crown procedures between Jan. 1, 2018, and Aug. 7, 2019 — amounting to more than 80 fraudulent crown procedures a month.
Weinman said patients can always seek a second opinion — especially for expensive treatments — and that a dentist who seems hesitant when you say you want a second opinion is worrisome. "A dentist who is confident in his or her abilities won't have a problem with you checking a diagnosis or treatment plan elsewhere," he said.
Other red flags: Weinman said to be wary of any dentist who seems to be reading from a script, or who pushes a treatment plan too hard or refuses to explain treatment options. "There may be several scientifically sound, evidence-based treatment plans available to a patient," Weinman said, "and a good dentist is willing to explain your options — even the ones that may not be as profitable."
More education typically leads to better health, yet Black men in the U.S. are not getting the same benefit as other groups, research suggests.
The reasons for the gap are vexing, experts said, but may provide an important window into unique challenges faced by Black men as they try to gain not only good health but also an equal footing in the U.S.
Generally, higher education means better-paying jobs and health insurance, healthier behaviors and longer lives. This is true across many demographic groups. And studies show life expectancy is higher for educated Black men — those with a college degree or higher — compared with those who have not finished high school.
But the increase is not as big as it is for whites. This comes on top of the many health obstacles Black men already face. They are more likely to die from chronic illnesses like cardiovascular disease, diabetes and cancer than white men, and their life expectancy, on average, is lower. Experts point to a variety of factors that might play a role, but many said the most pervasive is racism.
Researchers note that Black women face many of the same challenges as Black men, but Black women generally have a longer life expectancy than Black men. (They also point out that it is hard to draw conclusions about Hispanic residents because of a lack of studies on the issues.) As a result, many experts said that the health problems stem from a persistent devaluation of Black men in U.S. society.
"At every level of income and education, there is still an effect of race," said David Williams, a professor of public health at Harvard University who developed a scale nearly 30 years ago that quantified the connection between racism and health.
The precise difference in health gains between educated white men and educated Black men is hard to pinpoint because of differences in study designs. Some studies, for example, look at life expectancy, while others look at disease burden or depression.
Experts said, however, that the evidence is strong and convincing that these gaps have persisted over many years. A 2012 study published in Health Affairs, for example, found that life expectancy for white men with the most education was 12.9 years longer than for white men with the least education. For Black men, the difference was 9.7 years.
In addition, other research shows how that gap plays out. A 2019 study examined years of "lost life" — years cut off because of health challenges — between the groups. Educated Black men lost 12.09 years, while educated white men lost 8.34 years, according to the study, published in the Journal of Health and Social Behavior.
Racism affects Black men's health and it is persistent, experts said.
"No matter how far you go in school, no matter what you accomplish, you're still a Black man," said Derek Novacek, who has a doctorate in clinical psychology from Emory University and is researching Black-white health disparities at UCLA.
S. Jay Olshansky, a professor of epidemiology and biostatistics at the University of Illinois in Chicago and lead author of the 2012 study, said possible risk factors for various diseases and environmental issues could also play a role: "I'd be very surprised if this wasn't part of the equation. The risk of diabetes and obesity is much higher among the Black population, even those that are highly educated."
Among other possible causes that researchers are probing are stress and depression.
"When you follow other groups, with more education depression declines," said Dr. Shervin Assari, associate professor of medicine at Charles R. Drew University of Medicine and Science in Los Angeles County, California, who studies race, gender and health. "But when you look at Black men — guess what? Depression goes up."
Depression is often an indicator of physical well-being as well as a contributing factor to many chronic illnesses, such as hypertension, obesity and diabetes.
Isolated at Home and Work
Researchers who study the health of various racial and ethnic groups, as well as the social factors that influence health outcomes, see cause for concern. The findings suggest that the power of discrimination to harm Black men's lives may be more persistent than previously understood. And they could mean that improving Black men's health may be more complicated than previously believed.
"What has surprised me is how powerfully and consistently discrimination predicts poor health," said Williams.
COVID-19 has underscored the issue. As early as last April researchers noticed higher death and hospitalization rates for Black people. The patterns have persisted, with Black patients being nearly two times as likely as whites to die of the virus and Black men have the highest rates of COVID deaths.
The COVID outcomes, Williams and others suggested, helped point out that the health and well-being of middle-class, educated Black men have been overlooked.
Higher education hasn't brought about the health equity many experts had expected. While Black men have worse health than other groups if they are not educated, they can't catch up to their white peers even when they are.
"What society has done to Black men is to corner them," Assari said.
Black men, even with an education, have less of a financial and social safety net than white men. That brings added stress, the experts said. Also, as Black men climb a corporate, academic or managerial ladder, many feel isolated. And social isolation harms health.
Thomas LaVeist, a sociologist and dean of the school of public health at Tulane University, said that in a white-dominated society Black men are less likely to have family members with high incomes or social and business connections who can open doors for them. And once hired into the workplace, they are less likely to have mentors, LaVeist said, and that lack of connections is associated with stress, depression and other factors that can lead to poorer health.
"There needs to be a designated effort to provide an on-ramp" for Black men, he said.
And they may have experienced more cumulative adversity and continued racism.
"Your high socioeconomic status doesn't protect you from the impact or from the incidence" of racism, said Dr. Adrian Tyndall, associate vice president for strategic and academic affairs at University of Florida Health.
"That is difficult," added Tyndall, who is Black. "If I were to walk out of this institution and into the community, where people don't know me, I could be called the N-word. And yeah, that's pretty depressing."
The Need to Prove Yourself
The cumulative effect of discrimination takes a toll psychologically and physiologically — but so does the anticipation of it.
"It's not just the actual exposure in dealing with these kinds of experiences, but it's 'What do you do before leaving home?' You're careful about your dress, your behavior, the way you look because of the threat of discrimination, and so you react," said Williams, the Harvard professor.
For example, when Williams, who is Black, first became a professor at Yale University, he wore a coat and tie every day. No one else in his department did that. And yet, he said, he kept up the practice for years.
LaVeist remembers getting onto an elevator at an academic medical center around 1990, shortly after earning his Ph.D., and a passenger wearing a white coat — presumably a doctor — assumed LaVeist worked in housekeeping. The man asked LaVeist, who was dressed in a suit, to clean up a spill on the sixth floor.
"When I told him that I was a professor, he didn't speak," said LaVeist. "He simply didn't speak."
Greg Pennington, 67, of Atlanta, has a doctorate in clinical psychology from the University of North Carolina and an undergraduate degree from Harvard, owns a professional consulting firm and has worked with hundreds of men individually as well as dozens of Fortune 500 companies. "It's not so much that [Black men] experience discrimination and depression 'even after' they have advanced degrees," he said. "It's more descriptive to say 'throughout the whole process.'"
Despite their academic credentials, Black men said, they often feel they need to prove themselves, which adds another layer of stress.
"It's almost like I can't fail; I'm representative of other Black males," said Woodrow W. Winchester III, director of professional engineering programs at the University of Maryland-Baltimore County. "Your value and your success are around advancing the collective."
The bottom line, experts agreed, is that discrimination has a lingering effect on health.
Dana Goldman, director of the USC Schaeffer Center for Health Policy and Economics, was co-author of the 2012 Health Affairs study on these chasms. Goldman said he agrees that the underlying cause is racism and added that he thinks one solution is to improve education. He and others suggested that schools, starting in the lower grades, need to provide Black students with more culturally appropriate curricula that bolster their self-image and help build social relationships between white and Black youngsters. Those efforts need to continue as students progress into higher education.
"The policy remedy is not just less racism but to improve the quality of our schools, occupational safety and public health," Goldman said.
Others agree that the findings suggest a need to reconsider broad policy changes — in education, housing and the justice system — so that Black males feel confident and supported in pursuing better educations and jobs.
It will be a long-term project, said Williams, the Harvard professor.
"We need a Marshall Plan for all disenfranchised Americans," he said, but one that especially addresses implicit biases and how American society views and treats Black males.
The lab leak hypothesis has picked up more adherents as time passes and scientists fail to detect a bat or other animal infected with a virus that has COVID's signature genetics.
This article was published on Wednesday, May 19, 2021 in Kaiser Health News.
Once dismissed as a conspiracy theory, the idea that the COVID virus escaped from a Chinese lab is gaining high-profile attention. As it does, reputations of renowned scientists are at risk — and so is their personal safety.
At the center of the storm is Peter Daszak, whose EcoHealth Alliance has worked directly with Chinese coronavirus scientists for years. The scientist has been pilloried by Republicans and lost National Institutes of Health funding for his work. He gets floods of threats, including hate mail with suspicious powders. In a rare interview, he conceded that he can't disprove that the deadly COVID-19 virus resulted from a lab leak at the Wuhan Institute of Virology — though he doesn't believe it.
"It's a good conspiracy theory," Daszak told KHN. "Foreigners designing a virus in a mysterious lab, a nefarious activity, and then the cloak of secrecy around China."
But to attack scientists "is not only shooting the messenger," he said. "It's shooting the people with the conduit to where the next pandemic could happen."
Yet what if the messengers were not only bearing bad news but also accidentally unleashed a virus that went on to kill more than 3 million people?
The generally accepted scientific hypothesis holds that the COVID virus arose through natural mutations as it spread from bats to humans, possibly at one of China's numerous "wet markets," where caged animals are sold and slaughtered. An alternative explanation is that the virus somehow leaked from the Wuhan Institute, one of Daszak's scientific partners, possibly by way of an infected lab worker.
The lab leak hypothesis has picked up more adherents as time passes and scientists fail to detect a bat or other animal infected with a virus that has COVID's signature genetics. By contrast, within a few months of the start of the 2003 SARS pandemic, scientists found the culprit coronavirus in animals sold in Chinese markets. But samples from 80,000 animals to date have failed to turn up a virus pointing to the origins of SARS-CoV-2 — the virus that causes COVID. The virus's ancestors originated in bats in southern China, 600 miles from Wuhan. But COVID contains unusual mutations or sequences that made it ideal for infecting people, an issue explored in depth by journalist Nicholas Wade.
Scientists from the Wuhan Institute have collected thousands of coronavirus specimens from bats and registered them in databases closed to inspection. Could one of those viruses have escaped, perhaps after a "gain of function" experiment that rendered it more dangerous?
Daszak, who finds such theories specious, was the only American on a 10-member team that the World Health Organization sent to China this winter to investigate the origins of the virus. The group concluded its work without gaining access to databases at the Wuhan Institute, but dismissed the lab leak hypothesis as unlikely. WHO Director-General Tedros Adhanom Ghebreyesus, however, said the hypothesis "requires further investigation."
On Friday, 18 virus and immunology experts published a letter in the journal Science demanding a deeper dive. "Theories of accidental release from a lab and zoonotic spillover both remain viable," they said, adding that the Wuhan Institute should open its records. One of the signatories was a North Carolina virologist who has worked directly with the Wuhan Institute's top scientists.
That demand is "definitely not acceptable," responded Shi Zhengli, who directs the Center for Emerging Infectious Diseases at the Wuhan Institute. "Who can provide evidence that does not exist?" she told MIT Technology Review. Shi has said that thousands of attempts to hack its computer systems forced the institute to close its database.
Many leading virologists continue to believe that "zoonotic transmission" — from a bat or some other animal to a human — remains the most likely origin story. Yet the lack of evidence for that is troubling, 17 months after the emergence of COVID, said Stanley Perlman, a University of Iowa virologist who was not among the Science letter signatories.
The fact that no bat or other animal has been found infected with anything resembling the COVID virus, which suddenly swept through Wuhan at the end of 2019, "has put the lab leak hypothesis back on the table," although there is no evidence supporting that theory either, he said.
Alina Chan, a Broad Institute postdoctoral researcher who signed the Science letter, agrees that there is no "dispositive" evidence either way for COVID's emergence. But a network of amateur sleuths have put together evidence, she said, that the Wuhan Institute has COVID-like viruses in its collection that it has not deposited in global databases, as would be customary during a global pandemic. Chan and others are particularly curious about a bunch of SARS-like viruses that the institute collected from a cave in Yunnan province where guano miners suffered a deadly outbreak of respiratory disease in 2012.
"We don't have access to that data," Chan said. She and other scientists wonder why the COVID virus was so ideally suited to human-to-human transmission from the onset without signs of an intermediate host or circulation in the human population before the Wuhan outbreak.
In a paper posted to a virology forum last week, Robert Garry of Tulane University, who doubts the lab leak hypothesis, brought forth a new fragment of "spillover" evidence: The WHO report shows that some of the first 168 cases of COVID were linked to two or more animal markets in Wuhan, he said, with strains from different markets showing slight differences in their genetic sequence. "Maybe one animal was in a truck with a bunch of cages and then it spread it to another species and that's where the shift took place," Garry said.
Garry and other international scientists have worked with Shi and her lab for years. The evidence for Garry's supposition isn't airtight, he admitted, but it's more convincing than "contriving something where some of the world's leading virologists are covering up at the behest of the Chinese Communist Party," he said.
Shi has no greater defender in the United States than Daszak, whose EcoHealth Alliance was a wildlife protection organization when he joined it two decades ago. The group has since expanded its goals from protecting endangered animals to protecting humans endangered by the pathogens trafficked with those animals. The more than $50 million EcoHealth Alliance had received in U.S. funding since 2007 includes contracts and grants from two NIH institutes, the National Science Foundation and the U.S. Agency for International Development, as well as Pentagon funds to look for organisms that could be fashioned into bioterror weapons.
Daszak has co-authored at least 21 research papers on bat coronaviruses since 2005, finding hundreds of viruses capable of infecting people. He estimated that about 1 million people a year are infected with bat viruses — a number that's grown as humans encroach on bat habitats.
He recalled a 2019 visit to a cave filled with millions of bats. "Tourists were going in there in shorts, and we were in there in full PPE. They asked us, 'What are you doing?' and we told them, 'We're looking for viruses like SARS.'''
In April 2020, citing what he said was evidence of the virus's link to the Wuhan lab, President Donald Trump ordered the NIH to cancel a five-year, $3.7 million grant for EcoHealth Alliance's bat virus research. But about 70% of the group's annual $12 million budget continues to come from the U.S. government, Daszak said.
When the NIH grant was frozen, Daszak called the lab leak hypothesis "pure baloney," saying he was confident his Chinese scientific partners were not hiding anything. But he admits it is impossible to disprove.
"There are plenty of reasons to question China's openness and transparency on a whole range of issues including early reporting of the pandemic," he told KHN. "You can never definitively say that what China is telling us is correct."
Daszak said he thinks it more likely that China is covering up the role of the country's wildlife markets in COVID's origin. Farming of these animals employs 14 million people, and the government has closed and reopened the markets since SARS. Following the COVID outbreak, the Chinese authorities' investigation of Wuhan's animal markets, where the virus could have mutated after passage through different species, was incomplete, Daszak said.
"People don't realize how sensitive China is about this," he said. "It's plausible that they recognized there were cases coming out of a market and they shut it down."
A Controversy With Roots
The scientific conflict over the lab hypothesis is partly rooted in a debate over gain-of-function experiments, work that in theory could lead to the creation and release of more infectious or deadly organisms. In such experiments, scientists in a lab can, for example, test a virus's ability to mutate by exposing it to different cell types or to mice genetically engineered with human immune system traits.
At least six of the 18 signatories of the Science letter are part of the Cambridge Working Group, whose members worry about the release of pathogens from the growing number of virus labs around the world.
In 2012, Dr. Anthony Fauci, who leads NIH's National Institute of Allergy and Infectious Diseases, came out in support of a moratorium on such research, posing a hypothetical scenario involving a poorly trained scientist in a poorly regulated lab: "In an unlikely but conceivable turn of events, what if that scientist becomes infected with the virus, which leads to an outbreak and ultimately triggers a pandemic?" Fauci wrote.
In 2017, the federal government lifted its pause on such experiments but has since required some be approved by a federal board.
In his questioning of Fauci in the Senate last week, Sen. Rand Paul (R-Ky.) cited a 2015 paper written by Shi, Ralph Baric of the University of North Carolina and others in which they fused a SARS-like virus with a novel bat virus spike protein and found that it sickened research mice. The experiment provided evidence of the perils that lurked in Chinese bat caves, but the authors also raised the question of whether such studies were "too risky to pursue."
Critics have jumped on this paper as evidence that Shi was conducting "gain of function" experiments that could have created a superbug, but Shi denies it. The research cited in the paper was conducted in North Carolina.
Using a similar technique, in 2017, Baric's lab showed that remdesivir — currently the only licensed drug for treating COVID — could be useful in fighting coronavirus infections. Baric also helped test the Moderna COVID vaccine and a leading new drug candidate against COVID.
Research into COVID-like viruses is vital, Baric said. "A terrible truth," he said, "is that millions of coronaviruses exist in animal reservoirs, like bats, and unfortunately many appear poised for rapid transmission between species."
Baric told KHN he does not believe COVID resulted from gain-of-function research. But he signed the Science letter calling for a more thorough investigation of his Chinese colleagues' laboratory, he said in an email, because while he "personally believe[s] in the natural origin hypothesis," WHO should arrange for a rigorous, open investigation. It should review the biosafety level under which bat coronavirus research was conducted at the Wuhan Institute, obtaining detailed information on the training and safety procedures and efforts to monitor possible infections among lab personnel.
Fauci also told KHN, in an email, that "we at the NIH are very much in favor of a thorough investigation as to the origins of SARS-CoV-2."
Scaling the Wall of Secrecy
U.S.-China tensions will make it very difficult to conclude any such study, scientists on both sides of the issue suggest. With their anti-China rhetoric, Trump and his aides "could not have made it more difficult to get cooperation," said Dr. Gerald Keusch, associate director of the National Emerging Infectious Diseases Laboratory Institute at Boston University. If a disease had emerged from the U.S. and the Chinese blamed the Pentagon and demanded access to the data, "what would we say?" Keusch asked. "Would we throw out the red carpet, 'Come on over to Fort Detrick and the Rocky Mountain Lab?' We'd have done exactly what the Chinese did, which is say, 'Screw you!'"
Still, while China has shut off its laboratories to outside inquiry, that doesn't mean all investigative avenues are closed, Chan said. Many Chinese scientists were in contact with colleagues and journals outside the country as the pandemic emerged. Those communications may contain clues, Chan said, and someone should methodically interview the contacted individuals.
It's worth recalling that the only U.S. bioterror attack so far in the 21st century consisted of a U.S. bioterrorism researcher mailing anthrax spores to politicians and journalists. Hundreds of millions of dollars go into researching organisms around the world and there are risks of leaks, accidental or intentional, no matter how sophisticated the lab, Chan said.
But it would be unwise to limit support for global virus research, said Jonna Mazet, a University of California-Davis professor who led a USAID-funded program that trained scientists around the world to collect and research animal viruses. For her pains, she has received death threats and hacking attacks on her computers and home alarm system.
"If we don't do the work," she said, "we're just sitting ducks for the next one."
KHN correspondent Rachana Pradhan contributed to this report.
The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.
This has been a year like none other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.
It's taught her what families go through when caring for someone with serious illness as nothing has before. "Reading about caregiving of this kind was one thing. Experiencing it was entirely different," she told me.
Were it not for the challenges she's faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally — something she understood only abstractly previously as a geriatrician.
And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.
All these experiences have been "a gift, in a way: They've truly changed me," said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.
Elon's uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long-term care. "I don't think we, as a nation, are going to make needed improvements [in long-term care] until we take responsibility for our aging mothers and fathers — and do so with love and respect," she told me.
Elon has been acutely aware of prejudice against older adults — and determined to overcome it — since she first expressed interest in geriatrics in the late 1970s. "Why in the world would you want to do that?" she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. "What can you possibly do for those [old] people?"
Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the U.S. "She's an extraordinary advocate for elders and families," said Dr. Kris Kuhn, a retired geriatrician and longtime friend.
In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.
Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, Dr. William Henry Adler III, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.
Eventually, however, Adler's decline accelerated and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or speak and had lost the ability to climb down the stairs in their Severna Park, Maryland, house. "He became a prisoner in our upstairs bedroom," Elon said.
By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.
In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn't imaginable, so Elon kept him at home, remaining responsible for his care.
"I lost 20 pounds in four months," she told me. "It was incredibly demanding work, caring for him."
Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon's sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who has dementia, required significant assistance.
Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she'd spent her childhood. "It was time to leave the East Coast behind and be closer to family," she said.
By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon's isolation.
"I finally had help," she told me. "It was like night and day."
Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn't be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.
"In medicine, we often look at people who are profoundly impaired and ask, 'What kind of quality of life is that?'" Elon said. "But even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction." If she hadn't been by his side day and night, Elon said, she might not have appreciated this.
Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn't go well. The facility was on lockdown most of the time and staff members weren't especially attentive. Concerned about her mother's well-being, Elon took her out of the facility and brought her to her apartment in late December.
For two months, she tended to her husband's and mother's needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers' help, Elon began administering morphine to ease his pain and agitation.
"I thought, 'Oh, my God, is this what we ask families to deal with?'" she said. Though she had been a hospice medical director, "that didn't prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband."
Elon's mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who'd died in May; and the loss of her independence.
That, too, was a revelation made possible by being with her every day. "The dogma with people with dementia is you just stop talking about death because they can't process it," Elon said. "But I think that if you repeat what's happened over and over and you put it in context and you give them time, they can grieve and start to recover."
"Mom is doing so much better with Rebecca," said Deborah Bliss, 69, Elon's older sister, who lives in Plano, Texas, and who believes there are benefits for her sister as well. "I think having [Mom] there after Bill died, having someone else to care for, has been a good distraction."
And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly, as Elon works and she and her mother spend time together.
"Mom will look out at the lake and say, 'Oh, my goodness, these colors are so beautiful,'" Elon said. "When I cook, she'll tell me, 'It's so nice to have a meal with you.' When she goes to bed at night, she'll say, 'Oh, this bed feels so wonderful.' She's happy on a moment-to-moment basis. And I'm very thankful she's with me."
We're eager to hear from readers about questions you'd like answered, problems you've been having with your care and advice you need in dealing with the healthcare system. Visit khn.org/columnists to submit your requests or tips.
Last summer, Anna Ramsey suffered a flare-up of juvenile dermatomyositis, a rare autoimmune condition, posing a terrifying prospect for the Los Angeles resident: She might have to undergo chemotherapy, further compromising her immune system during a pandemic.
After an agonizing three-day wait, the results of a blood test came back in her online patient portal — but she didn't understand them. As hours passed, Ramsey bit her nails and paced. The next day, she gave in and emailed her doctor, who responded with an explanation and a plan.
For Ramsey, now 24, instant access to her test results had been a mixed blessing. "If there's something I'm really nervous about," she said, "then I want interpretations and answers with the result. Even if it takes a few days longer."
On April 5, a federal rule went into effect that requires healthcare providers to give patients like Ramsey electronic access to their health information without delay upon request, at no cost. Many patients may now find their doctors' clinical notes, test results and other medical data posted to their electronic portal as soon as they are available.
Advocates herald the rule as a long-awaited opportunity for patients to control their data and health.
"This levels the playing field," said Jan Walker, co-founder of OpenNotes, a group that has pushed for providers to share notes with patients. "A decade ago, the medical record belonged to the physician."
But the rollout of the rule has hit bumps, as doctors learn that patients might see information before they do. Like Ramsey, some patients have felt distressed when seeing test results dropped into their portal without a physician's explanation. And doctors' groups say they are confused and concerned about whether the notes of adolescent patients who don't want their parents to see sensitive information can be exempt — or if they will have to breach their patients' trust.
Patients have long had a legal right to their medical records but often have had to pay fees, wait weeks or sift through reams of paper to see them.
The rule aims not only to remove these barriers, but also to enable patients to access their health records through smartphone apps, and prevent healthcare providers from withholding information from other providers and health IT companies when a patient wants it to be shared. Privacy rules under the Health Insurance Portability and Accountability Act, which limit sharing of personal health information outside a clinic, remain in place, although privacy advocates have warned that patients who choose to share their data with consumer apps will put their data at risk.
For Sarah Ford, 34, of Pittsburgh, who has multiple sclerosis, reading her doctor's notes helps her make the most of each visit and feel informed.
"I don't like going into the office and feeling like I don't know what's going to happen," she said. If she wants to try a new medication or treatment, reading previous notes helps her prepare to discuss it with her doctor, she said.
Another study, published in February, found that 1 in 10 patients had ever felt offended or judged after reading a note. The study's lead author, Dr. Leonor Fernandez, of Beth Israel Deaconess Medical Center, said there is a "legacy of certain ways of expressing things in medicine that didn't really take into account how it reads when you're a patient."
"Maybe we can rethink some of these," she said, citing the phrase "patient admits to drinking two glasses of wine a day" as an example. "Why not just write 'two glasses of wine a day'?"
UC San Diego Health started phasing in open notes to patients in 2018 and removed a delay in the release of lab results last year. Overall, said Dr. Brian Clay, chief medical information officer, both have been uneventful. "Most patients are agnostic, some are super-jazzed, and a few are distressed or have lots of questions and are communicating with us a lot," he said.
There are exceptions to the requirement to release patient data, such as psychotherapy notes and notes that could harm a patient or someone else if released.
Dr. David Bell, president of the Society for Adolescent Health and Medicine, believes it's unclear exactly what qualifies as "substantial harm" to a patient — the standard that must be met for doctors to withhold an adolescent patient's notes from a parent. Clarity, he said, is especially important to protect teenagers living in states with less restrictive laws on parental access to medical records.
Most electronic medical records are not equipped to segregate sensitive pieces from other information that might be useful for a parent in managing their child's health, he added.
Some doctors say receiving devastating test results without counseling can traumatize patients. Dr. James Kenealy, an ear, nose and throat doctor in central Massachusetts, said a positive cancer biopsy result for one of his patients was automatically pushed to his portal over the weekend, blindsiding both. "You can give bad news, but if you have a plan and explain, they're much better off," he said.
Such incidents aren't affecting the majority of patients, but they're not rare, said Dr. Jack Resneck Jr., an American Medical Association board trustee. The AMA is advocating for "tweaks" to the rule, he said, like allowing brief delays in releasing results for a few of the highest-stakes tests, like those diagnosing cancer, and more clarity on whether the harm exception applies to adolescent patients who might face emotional distress if their doctor breached their trust by sharing sensitive information with their parents.
The Office of the National Coordinator for Health Information Technology, the federal agency overseeing the rule, responded in an email that it has heard these concerns, but has also heard from clinicians that patients value receiving this information in a timely fashion, and that patients can decide whether they want to look at results once they receive them or wait until they can review them with their doctor. It added that the rule does not require giving parents access to protected health information if they did not already have that right under HIPAA.
Patient advocate Cynthia Fisher believes there should be no exceptions to immediately releasing results, noting that many patients want and need test results as soon as possible, and that delays can lead to worse health outcomes. Instead of facing long wait times to discuss diagnoses with their doctors, she said, patients can now take their results elsewhere. "We can't assume the consumer is ignorant and unresourceful," she said.
In the meantime, hospitals and doctors are finding ways to adapt, and their tactics could have lasting implications for patient knowledge and physician workload. At Massachusetts General Hospital, a guide for patients on how to interpret medical terminology in radiology reports is being developed, said Dr. William Mehan, a neuroradiologist.
An internal survey run after radiology results became immediately available to patients found that some doctors were monitoring their inbox after hours in case results arrived. "Burnout has come up in this conversation," Mehan said.
Some electronic health records enable doctors to withhold test results at the time they are ordered, said Jodi Daniel, a partner at the law firm Crowell & Moring. Doctors who can do this could ask patients whether they want their results released immediately or if they want their doctor to communicate the result, assuming they meet certain criteria for exceptions under the rule, she said.
Chantal Worzala, a health technology policy consultant, said more is to come. "There will be a lot more conversation about the tools that individuals want and need in order to access and understand their health information," she said.
Journalists discussed the challenging environment for news and facts that grew out of the pandemic.
This article was published on Monday, May 17, 2021 in Kaiser Health News.
Jon Greenberg interviewed Elisabeth Rosenthal, editor-in-chief of KHN; Shefali Luthra, health and gender reporter at The 19th; and Derek Thompson, staff writer for The Atlantic, about COVID-19 misinformation during PolitiFact's United Facts of America: A Festival of Fact-Checking.
The journalists discussed the challenging environment for news and facts that grew out of the pandemic. One major issue was that Americans simply were not used to the idea that infectious diseases could cause mass disaster, Rosenthal said. That mentality, combined with misinformation spread by then-President Donald Trump, made it easy for lies about the virus to perpetuate.
Amid a pandemic that left law enforcement agencies stretched thin and forced shutdowns that left young men with little to do, California registered a devastating surge in homicides in 2020 that hit especially hard in Black and Latino communities.
The number of homicide victims in California jumped 27% from 2019 to 2020, to about 2,300, marking the largest year-over-year increase in three decades, according to preliminary death certificate data from the California Department of Public Health.
There were 5.8 homicides per 100,000 residents in 2020, the highest rate in California since 2008.
Similar increases were seen nationwide. The number of homicides in a sampling of large cities grew 32% from 2019 to 2020, according to preliminary FBI data. The data encompasses over 200 cities with more than 100,000 people but does not include some big cities, like New York, Chicago and Philadelphia, that did not report.
The California death certificate data reveals striking disparities in who fell victim to homicide in 2020.
The number of homicides that took the lives of Black Californians rose 36% from 2019 to 2020, while homicides that took Hispanic lives rose 30%. By comparison, the number of white homicide victims rose 15% and the number of Asian victims rose 10%.
Most victims of homicide in 2020 were young, between 15 and 34 years old; the number of homicide victims in this age group rose from about 900 in 2019 to 1,175 in 2020, a 31% rise.
Firearms were the most common instrument of death, and the number of homicides involving guns rose 35% last year, the state data shows. Extending another long-standing trend: Males were five times as likely to be the victims of homicide as females. The number of male victims rose 30% in 2020, compared with a 14% rise in female victims.
The increase in deadly violence played out across large swaths of the state, urban and rural, and was keenly felt in the San Francisco Bay Area. Among California's 10 most populous counties, the sharpest increases were reported in Alameda County, where homicides rose 57%, followed by Fresno (44%), Sacramento (36%) and Los Angeles (32%). Only one of the 10 most populous counties — Contra Costa — saw a decline in homicides last year.
Law enforcement officials and criminologists said an increase in conflict among young adults, particularly those in street gangs, was a significant factor in the violence. They noted that schools and sports programs shut down as COVID-19 surged, as did large numbers of community and nonprofit programs that provide support, recreational outlets and intervention services for at-risk youth.
"They were bored," said Reynaldo Reaser, executive director of Reclaiming America's Communities Through Empowerment (R.A.C.E.), which offers sports leagues, gang mediation and youth development in impoverished neighborhoods of South Los Angeles. "And so, having nothing to do — no programs, no sports, no facilities open — the only thing they could focus on is each other."
Reaser runs a dynamic youth softball league that typically would draw more than 600 players and spectators during Sunday play, he said, many of them young gang members. But those games and other programs were curtailed during the COVID pandemic.
Terrell Williams, an 18-year-old who lives in the West Athens area of South Los Angeles, said he spent many nights doing "delinquent stuff" before Reaser's program changed his life. He said many of his peers felt cooped up and restless during the pandemic lockdowns, which contributed to an increase in violence.
"COVID tended to, I guess, make people not want to stay inside the house, and drove them outside more towards each other," he said.
Jorja Leap, a UCLA anthropologist and expert in gangs, violence and trauma, echoed that theme, saying the restrictions on youth intervention programs and other healthy activities played "a huge role" in the rise in violence.
"The sports after school — football, basketball, whatever it might be — all that is stopped," said Leap, a faculty member at UCLA's Luskin School of Public Affairs. "So, frankly, you got a lot of adolescent and young adult energies out there."
Leap said young adults were particularly vulnerable to the mental toll of the pandemic. "They finally get programs; they have people interested in them. And then, it's all of a sudden withdrawn," she said.
Pandemic-fueled anxiety and isolation corresponded with a huge increase in gun sales, which Leap said may also explain some of the increase in homicides. "I am worried about how easy it has been to get a gun during such a crisis time in America," she said.
"It's not 'Pick one factor,'" she added. "All of these factors reinforce each other."
David Robinson is the sheriff in Kings County, a largely rural county in Southern California that registered 15 homicides in 2020, up from four in 2019. He is also president of the California State Sheriffs' Association, giving him a wide lens on a difficult year.
Robinson agreed that an increase in gang activity and the "mental impact" of telling young adults they had to stay indoors likely contributed to the violence. But separately, he cited the toll the pandemic took on police agencies. Many officers fell ill with COVID, forcing their agencies to reduce patrols and other crime prevention efforts.
The mass protests that followed George Floyd's murder by a Minneapolis police officer last May also diverted resources, said Robinson. And the anger directed at police made it tougher for some officers to do their jobs.
"When there's this call to defund police, it has an impact on the mentality of the men and women doing the job," he said, adding that constant criticism can cause officers to "become more reactive than proactive."
Robinson echoed other law enforcement officers in noting that thousands of inmates were released early from state prisons and county jails during the pandemic to stem COVID outbreaks. He said he thinks research eventually will show a correlation with the surge in homicides.
Leap disagreed. "If you get two shoplifting charges, it's a felony," she said. "That's who they're releasing. They're not releasing people from death row."
With mass vaccinations taking place across the state and nation, more places are reopening and young adults have more options to engage in something positive. But Leap said it will take a broad effort to bolster jobs and education, along with short-term intervention aimed at those still hurting from the pandemic, to improve the social conditions that contributed to the increase in homicides.
"As much as we've never dealt with a global pandemic in modern times, we've never dealt with the aftermath of a global pandemic," she said.
Reaser, in Los Angeles, is nonetheless optimistic. After a year of shutdowns, his youth softball league is starting up again. Finally, instead of trying to work out conflicts over the phone or online, Reaser can get young adult rivals to talk, face to face, and bond in a positive way.
"I really think that a lot of programs will open up," he said. "A lot of violence will slow down."
Methodology
This story draws on data from three sources. The data from these sources matches closely, but not precisely. Cause of death and population figures for 1979 through 2018 come from the federal Centers for Disease Control and Prevention. Cause of death figures for 2019 and 2020 come primarily from the California Department of Public Health and are based on death certificates. The exception is 2019 data for eight largely rural counties with few homicides. CDPH did not publish specific 2019 homicide figures for those counties due to data privacy rules. For those counties, 2019 homicide data comes from the California Department of Justice.
Phillip Reese is a data reporting specialist and an assistant professor of journalism at California State University-Sacramento.
For cancer patients, the road from diagnosis to survivorship feels like a never-ending parade of medical appointments: surgeries, bloodwork, chemotherapy, radiation treatments, scans. The routine is time-consuming and costly. So, when hospitals charge patients double-digit parking fees, patients often leave the garage demoralized.
Iram Leon vividly remembers the first time he went for a follow-up MRI appointment at Dell Seton Medical Center in Austin, Texas, after he had been treated at another hospital for a brain tumor.
The medical news was good: His stage 2 tumor was stable. The financial news was not. When he sat down at the receptionist's desk to check out, Leon was confronted by a bold, red-lettered sign on the back of her computer that read: "WE DO NOT VALIDATE PARKING."
Below that all-caps statement was a list of parking rates, starting with $2 for a 30-minute visit and maxing out at $28 a day. Lose your ticket? Then you could pay $27 for an hour.
"To this day, I remember that sign," Leon, 40, said of the 2017 appointment, which he posted about on Facebook. "These patients were people who were coming in for various types of cancer treatment. These were people who were keenly aware of their own mortality, and yet the sign was screaming at them, 'We do not validate parking.'" (Hospital officials did not respond to requests for comment about their parking policy.)
JulieAnn Villa, who was diagnosed in March with her third bout of cancer, estimates she has spent "thousands of dollars" on parking fees during her years of treatment and follow-up care. She faces a transportation dilemma every time she commutes 6 miles to Chicago's Northwestern Memorial Hospital from her apartment. Should she take public transit? Call a pandemic surge-rate Uber? Ask a friend to drive her? Or pay $12 to $26 (with validation) to park in a garage where each floor is named after singers like Dolly Parton and Frank Sinatra?
She was hospitalized for multiple days in April after spending 23 hours alone in an overburdened ER, because she didn't want friends to pay to wait with her. "I almost drove myself, and I'm so glad I didn't," Villa said. "That would have been expensive."
Long a source of frustration for patients, the costs of parking while in cancer treatment is finally drawing national scrutiny from oncology researchers and even some hospital administrators.
"If you want to rile up patients or caregivers or family members, just bring up parking costs," said Dr. Fumiko Chino, a radiation oncologist at Memorial Sloan Kettering Cancer Center in New York who studies the "financial toxicity" of cancer treatment, including costs not covered by insurance, such as parking fees.
Chino, who enrolled in medical school after her husband died of a rare neuroendocrine cancer in 2007, added, "For people who have to pay $15 to $18 every single time, which is what I remember paying, it really feels like the last straw, frankly — like kicking you when you're down."
Public transit is possible for some cancer patients in larger cities, but not for those too ill or immunocompromised. Others have accessibility issues. Many must travel to get care, making driving the best option.
Parking fees can have implications for more than just the patient. "Some patients say, 'This is the reason I didn't participate in a clinical trial, because I couldn't afford the parking,'" Chino said.
At a time when hospitals and drug companies are under increasing pressure to diversify clinical trial populations, testing only patients who can afford high parking fees is problematic, Chino said.
There are some pilot programs to improve access to drug trials, and some charities, such as the Leukemia & Lymphoma Society, offer travel grants, but accessibility remains a substantial barrier to cancer care, said Elizabeth Franklin, president of the nonprofit Cancer Support Community, which offers financial aid to patients and advocates in Washington, D.C., for "patient-centered" health policies.
"The true definition of a patient-centered healthcare system," Franklin said, is one that allows patients to choose the best means of transportation. "It's not making them go into debt because they've had to pay a ton of money for parking each time they go to the clinic or the hospital."
Chino and colleagues published a short study in July showing that some cancer patients pay $1,680 over the course of treatment.
According to readership statistics released in late March, the study was the most read and downloaded article in JAMA Oncology last year, and it continues to prompt a lively social media response. A thread on Reddit has logged more than 1,100 comments, including many from patients in other countries voicing surprise at U.S. parking policies.
The researchers calculated the cost to park at 63 National Cancer Institute-designated cancer centers while receiving the standard number of treatments for each of three types of cancers: node-positive breast cancer, head and neck cancers, and acute myeloid leukemia, or AML. They did not calculate costs for follow-up appointments, blood draws, routine scans and immune-boosting injections.
They found that, while 20 of the hospitals provided free parking for all cancer patients, the other 43 had widely varying fees.
"The range was $0 to $800 for breast cancer," Chino said. "That's huge, and it's not like the person who's paying $800 is necessarily getting any better treatment." The maximum charges for a standard course of therapy for head and neck cancer were $665 and for AML, $1,680.
Practices should change, Chino said, "to alleviate this strain for our patients."
Of the 63 hospitals, including those where parking is free for cancer patients, 54% offered free parking for chemotherapy and 68% for radiation treatment.
The top daily parking rate, according to the researchers, is $40 at New York's Mount Sinai Hospital. (A spokesperson for Mount Sinai declined to comment.) Chino's own institution, Memorial Sloan Kettering, is not far behind; parking at one of its main garages begins at $12 an hour and maxes out at $36 a day. A spokesperson for the hospital said some locations do offer free parking, and all patients can apply for aid to cover parking costs.
A few colleagues scoffed when Chino said she was researching parking charges, she said, but a growing number of mostly younger oncologists are concerned about indirect costs that contribute to the financial toxicity of cancer.
"It seems ethically incorrect to nickel-and-dime patients for parking charges," a trio of doctors wrote last year in an editorial published by the American Society of Clinical Oncologists. They acknowledge that most top cancer hospitals are in urban centers, where parking costs are often high and third-party agencies may operate the garages. "Nevertheless, in 2020, with our multibillion-dollar cancer center budgets, we as healthcare systems should do everything we can to help patients and caregivers," the editorial said.
City of Hope National Medical Center in Los Angeles is one of the 20 NCI-designated hospitals that do not charge patients for parking. Dr. Vijay Trisal, a surgical oncologist who serves as City of Hope's chief medical officer, takes pride in that distinction.
"Charging cancer patients for parking is like a knife in the back," he said. "We can't control copays, but we can control what patients pay for parking."
While Trisal would never want a patient to choose City of Hope for the free parking alone, he acknowledges the policy gives his hospital a competitive advantage.
"You would not believe how many patients have said to me, 'Thank you for not charging for parking,'" he said.