Virtual visits can also save patients money, because they might not need to travel, take time off work or pay for child care.

This article was published on Monday, May 24, 2021 in Kaiser Health News.

By Eric Berger

When the COVID-19 pandemic forced behavioral health providers to stop seeing patients in person and instead hold therapy sessions remotely, the switch produced an unintended, positive consequence: Fewer patients skipped appointments.

That had long been a problem in mental healthcare. Some outpatient programs previously had no-show rates as high as 60%, according to several studies.

Only 9% of psychiatrists reported that all patients kept their appointments before the pandemic, according to an American Psychiatric Association report. Once providers switched to telepsychiatry, that number increased to 32%.

Not only that, but providers and patients say teletherapy has largely been an effective lifeline for people struggling with anxiety, depression and other psychological issues during an extraordinarily difficult time, even though it created a new set of challenges.

Many providers say they plan to continue offering teletherapy after the pandemic. Some states are making permanent the temporary pandemic rules that allow providers to be reimbursed at the same rates as for in-person visits, which is welcome news to practitioners who take patients' insurance.

"We are in a mental health crisis right now, so more people are struggling and may be more open to accessing services," said psychologist Allison Dempsey, associate professor at University of Colorado School of Medicine in Aurora. "It's much easier to connect from your living room."

The problem for patients who didn't show up was often as simple as a canceled ride, said Jody Long, a clinical social worker who studied the 60% rate of no-shows or late cancellations at the University of Tennessee Health Science Center psychiatric clinic.

But sometimes it was the health problem itself. Long remembers seeing a first-time patient drive around the parking lot and then exit. The patient later called and told Long, "I just could not get out of the car; please forgive me and reschedule me."

Long, now an assistant professor at Jacksonville State University in Alabama, said that incident changed his perspective. "I realized when you're having panic attacks or anxiety attacks or suffering from major depressive disorder, it's hard," he said. "It's like you have built up these walls for protection and then all of a sudden you're having to let these walls down."

Absences strain providers whose bosses set billing and productivity expectations and those in private practice who lose billable hours, said Dempsey, who directs a program to provide mental healthcare for families of babies with serious medical complications. Psychotherapists often overbooked patients with the expectation that some would not show up, she said.

Now Dempsey and her colleagues no longer need to overbook. When patients don't show up, staffers can sometimes contact a patient right away and hold the session. Other times, they can reschedule them for later that day or a different day.

And telepsychiatry performs as well as, if not better than, face-to-face delivery of mental health services, according to a World Journal of Psychiatry review of 452 studies.

Virtual visits can also save patients money, because they might not need to travel, take time off work or pay for child care, said Dr. Jay Shore, chairperson of the American Psychiatric Association's telepsychiatry committee and a psychiatrist at the University of Colorado medical school.

Shore started examining the potential of video conferencing to reach rural patients in the late '90s and concluded that patients and providers can virtually build rapport, which he said is fundamental for effective therapy and medicine management.

But before the pandemic, almost 64% of psychiatrists had never used telehealth, according to the psychiatric association. Amid widespread skepticism, providers then had to do "10 years of implementations in 10 days," said Shore, who has consulted with Dempsey and other providers.

Dempsey and her colleagues faced a steep learning curve. She said she recently held a video therapy session with a mother who "seemed very out of it" before disappearing from the screen while her baby was crying.

She wondered if the patient's exit was related to the stress of new motherhood or "something more concerning," like addiction, she said. She thinks she might have better understood the woman's condition had they been in the same room. The patient called Dempsey's team that night and told them she had relapsed into drug use and been taken to the emergency room. The mental health providers directed her to a treatment program, Dempsey said.

"We spent a lot of time reviewing what happened with that case and thinking about what we need to do differently," Dempsey said.

Providers now routinely ask for the name of someone to call if they lose a connection and can no longer reach the patient.

In another session, Dempsey noticed that a patient seemed guarded and saw her partner hovering in the background. She said she worried about the possibility of domestic violence or "some other form of controlling behavior."

In such cases, Dempsey called after the appointments or sent the patients secure messages to their online health portal. She asked if they felt safe and suggested they talk in person.

Such inability to maintain privacy remains a concern.

In a Walmart parking lot recently, Western Illinois University psychologist Kristy Keefe heard a patient talking with her therapist from her car. Keefe said she wondered if the patient "had no other safe place to go to."

To avoid that scenario, Keefe does 30-minute consultations with patients before their first telehealth appointment. She asks if they have space to talk where no one can overhear them and makes sure they have sufficient internet access and know how to use video conferencing.

To ensure that she, too, was prepared, Keefe upgraded her Wi-Fi router, purchased two white noise machines to drown out her conversations and placed a stop sign on her door during appointments so her 5-year-old son knew she was seeing patients.

Keefe concluded that audio alone sometimes works better than video, which often lags. Over the phone, she and her psychology students "got really sensitive to tone fluctuations" in a patient's voice and were better able to "pick up the emotion" than with video conferencing, she said.

With those telehealth visits, her 20% no-show rate evaporated.

Kate Barnes, a 29-year-old middle school teacher in Fayetteville, Arkansas, who struggles with anxiety and depression, also has found visits easier by phone than by Zoom, because she doesn't feel like a spotlight is on her.

"I can focus more on what I want to say," she said.

In one of Keefe's video sessions, though, a patient reached out, touched the camera and started to cry as she said how appreciative she was that someone was there, Keefe recalled.

"I am so very thankful that they had something in this terrible time of loss and trauma and isolation," said Keefe.

Demand for mental health services will likely continue even after the lifting of all COVID restrictions. About 41% of adults were suffering from anxiety or depression in January, compared with about 11% two years before, according to data from the U.S. Census Bureau and the National Health Interview Survey.

"That is not going to go away with snapping our fingers," Dempsey said.

After the pandemic, Shore said, providers should review data from the past year and determine when virtual care or in-person care is more effective. He also said the healthcare industry needs to work to bridge the digital divide that exists because of lack of access to devices and broadband internet.

Even though Barnes, the teacher, said she did not see teletherapy as less effective than in-person therapy, she would like to return to seeing her therapist in person.

"When you are in person with someone, you can pick up on their body language better," she said. "It's a lot harder over a video call to do that."

Large numbers of older adults have become physically and cognitively debilitated and less able to care for themselves during 15 months of sheltering in place.

This article was published on Friday, May 21, 2021 in Kaiser Health News.

By Judith Graham

Ronald Lindquist, 87, has been active all his life. So, he wasn't prepared for what happened when he stopped going out during the coronavirus pandemic and spent most of his time, inactive, at home.

Navigating Aging focuses on medical issues and advice associated with aging and end-of-life care, helping America's 45 million seniors and their families navigate the healthcare system.
 
"I found it hard to get up and get out of bed," said Lindquist, who lives with his wife of 67 years in Palm Springs, California. "I just wanted to lay around. I lost my desire to do things."

Physically, Lindquist noticed that getting up out of a chair was difficult, as was getting into and out of his car. "I was praying 'Lord, give me some strength.' I kind of felt, I'm on my way out — I'm not going to make it," he admitted.

One little-discussed, long-term toll of the pandemic: Large numbers of older adults have become physically and cognitively debilitated and less able to care for themselves during 15 months of sheltering in place.

No large-scale studies have documented the extent of this phenomenon. But physicians, physical therapists and health plan leaders said the prospect of increased impairment and frailty in the older population is a growing concern.

"Anyone who cares for older adults has seen a significant decline in functioning as people have been less active," said Dr. Jonathan Bean, an expert in geriatric rehabilitation and director of the New England Geriatric Research, Education and Clinical Center at the Veterans Affairs Boston Healthcare System.

Bean's 90-year-old mother, who lives in an assisted living facility, is a case in point. Before the pandemic, she could walk with a walker, engage in conversation and manage going to the bathroom. Now, she depends on a wheelchair and "her dementia has rapidly accelerated — she can't really care for herself," the doctor said.

Bean said his mother is no longer able to benefit from rehabilitative therapies. But many older adults might be able to realize improvements if given proper attention.

"Immobility and debility are outcomes to this horrific pandemic that people aren't even talking about yet," said Linda Teodosio, a physical therapist and division rehabilitation manager in Bayada Home Healthcare's Towson, Maryland, office. "What I'd love to see is a national effort, maybe by the CDC [U.S. Centers for Disease Control and Prevention], focused on helping older people overcome these kinds of impairments."

The extent of the need is substantial, by many accounts. Teodosio said she and her staff have seen a "tremendous increase" in falls and in the exacerbation of chronic illnesses such as diabetes, congestive heart failure and chronic obstructive pulmonary disease.

"Older adults got off schedule during the pandemic," she explained, and "they didn't eat well, they didn't hydrate properly, they didn't move, they got weaker."

Dr. Lauren Jan Gleason, a geriatrician and assistant professor of medicine at the University of Chicago, said many older patients have lost muscle mass and strength this past year and are having difficulties with mobility and balance they didn't have previously.

"I'm seeing weight gain and weight loss, and a lot more depression," she noted.

Mary Louise Amilicia, 67, of East Meadow, New York, put on more than 100 pounds while staying at home round-the-clock and taking care of her husband Frank, 69, who was hospitalized with a severe case of COVID-19 in early December. While Amilicia also tested positive for the virus, she had a mild case.

"We were in the house every day 24/7, except when we had to go to the doctor, and when he got sick I had to do all the stuff he used to do," Amilicia told me. "It was a lot of stress. I just began eating everything in sight and not taking care of myself."

The extra weight made it hard to move around, and Amilicia fell several times after Christmas, fortunately without sustaining serious injuries.

After coming home from the hospital, Frank couldn't get out of a chair, walk 10 feet to the bathroom or climb the stairs in his house. Instead, he spent most of the day in a recliner, relying on his wife for help.

Now, the couple is getting physical therapy from Northwell Health, New York state's largest healthcare system. Just before the pandemic, Northwell launched a "rehabilitation at home" program for patients who otherwise would have seen therapists in outpatient facilities. (Medicare Part B pays for the treatments.)

The program is serving more than 100 patients on Long Island, in Westchester County and in parts of New York City. "The demand is very strong and we're in the process of hiring another 20 therapists," said Nina DePaola, Northwell's vice president of post-acute services.

Sabaa Mundia, a physical therapist working with the Amilicias, said Mary Louise can walk up to 400 feet without a walker, after doing strengthening exercises twice a week over the course of three weeks. Frank had been using a wheelchair and is now regularly walking 150 feet with a walker after more than a month of therapy.

"Older adults can lose about 20% of their muscle mass if they don't walk for up to five days," Mundia said. "And their endurance decreases, their stamina decreases, and their range of motion decreases."

Recognizing that risk, some health plans have been reaching out to older members to assess how they're faring. In Massachusetts, Commonwealth Care Alliance serves more than 10,000 older adults who are poor and eligible for both Medicare and Medicaid, the federal-state program for people with low incomes. On average, they tend to have more medical needs than similarly aged seniors.

Between March and September last year, the plan's staffers conducted "wellness outreach assessments" by phone every two weeks, asking about ongoing medical care, new physical and emotional challenges, and the adequacy of available help, among other concerns. Today, calls are made monthly and staffers have resumed seeing members in person.

An increase in physical deconditioning is one of the big issues that have emerged. "We've had physical therapists digitally engage with members to coach them through strength and balance training," said Dr. Robert MacArthur, a geriatrician and Commonwealth Care's chief medical officer. "And when that didn't work, we sent therapists into people's homes."

In California, SCAN Health Plan serves a similarly vulnerable population of nearly 15,000 older adults dually eligible for Medicare and Medicaid through its Medicare Advantage plans. Care navigators are calling these members frequently and telling them "now that you're vaccinated, it's safe to go see your doctor in person," said Eve Gelb, SCAN's senior vice president of healthcare services. Doctors can then evaluate unmet health needs and make referrals to physical and occupational therapists, if necessary.

Another SCAN program, Member2Member, pairs older adult "peer health advocates" with members who have noted physical or emotional difficulties on health risk assessments. That's how Lindquist in Palm Springs connected with Jerry Payne, 79, a peer advocate who calls him regularly and helped him come up with a plan to emerge from his pandemic-induced funk.

"First, he said, 'Ron, you should try getting up every hour and taking a few steps' — that was the start of it," Lindquist told me. "Then, he'd suggest walking another block when I would take my dog out. It was painful. Walking was not pleasant. But he was very encouraging."

A month ago, Payne had a Fitbit sent to Lindquist. At first, Lindquist walked about 1,500 steps a day; now, he's up to more than 5,000 steps a day and has a goal of reaching 10,000 steps. "I'm sleeping better and I feel so much better all around," Lindquist said. "My whole attitude and physicality has changed. I tell you, this has been an answer to my prayers."

Coming Monday: Tips for Older Adults to Regain Their Game

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.

Judith Graham: khn.navigatingaging@gmail.com, @judith_graham

An expanding list of Black gardening enthusiasts-turned-entrepreneurs across the country run seed businesses that have benefited from the pandemic-inspired global gardening boom.

By Chandra Thomas Whitfield May 20, 2021

DENVER — Ietef Vita had planned to spend most of 2020 on the road, promoting "Biomimicz," the album the rapper had released on his #plantbasedrecords label in January. Vita, known to his fans as "DJ Cavem Moetavation" and "Chef Ietef," had those plans unexpectedly cut short.

"We were in Berkeley, California, on Feb. 29, playing there and literally got out of town right before they shut the whole country down," recalled Vita, 34, who has performed for the Obamas and is widely considered the father of what's known as eco-hip-hop. "It was scary."

Suddenly sidelined at his metro Denver home with his wife, Alkemia Earth, a plant-based-lifestyle coach, and three daughters, Vita struggled to pivot. Eventually, he accepted that he would need to stay put and, as the saying goes, bloom where he was planted.

With his wife's help, he launched an impromptu campaign: mailing out thousands of the more than 42,000 packets of kale, beet and arugula seeds he'd planned to sell at his shows, all emblazoned with his likeness and the QR code to hear his digital album. With the help of a crowdfunding campaign, he sent them at no cost to urban farmers anywhere and everywhere the couple could think of — Minneapolis, St. Louis, Cincinnati, Chicago, New York City, several parts of California and his hometown of Denver. He hoped the seeds might help alleviate the food shortages and long lines at grocery stores and food banks in economically disadvantaged communities hit hard during the pandemic.

His effort of putting out beets with his beats was a success. And, more than a year later, his seed business is still growing. Vita is among an expanding list of Black gardening enthusiasts-turned-entrepreneurs across the country. They run seed businesses that have benefited from the pandemic-inspired global gardening boom that seed providers, still overwhelmed with orders, hope won't subside anytime soon.

Gods Garden Girl, Coco and Seed, Urban Farms Garden Shop and I Grow Shit are all Black-owned companies that share in Vita's mission of drawing more diverse people into gardening and also illuminating it as an active, pandemic-safe pastime that facilitates healthy eating.

It also provides an escape from stress, including racial stress, which has simmered and exploded at times after George Floyd's murder in Minneapolis.

Research has found that exposure to plants and green spaces while gardening is beneficial to mental and physical health. In fact, a 2018 article in Clinical Medicine noted that merely viewing plants can reduce stress and diminish feelings of fear, anger or sadness by reducing blood pressure and pulse rate and also relieving muscle tension. The same report urged health professionals to encourage their patients to spend time in green spaces and to work in gardens.

Leah Penniman, a farmer and food activist in New York, wrote in her book "Farming While Black" that Black America's connection to seeds dates to the days of enslavement, when some Africans braided seeds into their hair when they were shipped away from home. It was, as Penniman wrote, "insurance for an uncertain future."

But many Black people in the U.S. have intentionally disconnected from farming since then because of its association with the painful legacy of slavery, said Natalie Baszile, author of a recently published anthology on African American farmers and the "Queen Sugar" novel that inspired the Oprah Winfrey Network TV drama centered on a Black family's Louisiana farm.

"Part of our cultural narrative has been to move away from the land, because moving away from the land represents progress," Baszile said. "The farther away you are from the land, the more successful you are. You go away to school, you get your education, you get another degree, you get a job in a field where you don't have your hands in the soil."

But Baszile, too, hopes the seed and gardening trend will inspire more Black people to see the health benefits of gardening.

"There is a therapeutic element to being outside planting, even if it's just a flower garden," she said. "There is something absolutely essential and healthy and meditative about getting outside doing something physical; you're moving your body, you are getting exercise, you're breathing clean air, you're connecting to the Earth."

And she said connecting to the soil empowers people, whether they are growing their own food or selling seeds as an entrepreneur.

The owner of Melanated Organic Seeds, Devona Stevenson, agrees. She said she initially took up gardening for relaxation in 2018 after a bout of depression. She then launched her seed business last June at the height of the pandemic, because she saw a need, even dating to her days growing up near Miami.

"All I saw around me was fast food and people eating junk food from the corner store," said Stevenson, who is relocating from Fort Lauderdale, Florida, to nearly 2 acres in Fayetteville, Georgia. "I believe that representation matters. So, basically, I saw a need and decided to fill it. For me, it's also about reaching an untapped market, a group of people that have not really been marketed to, in terms of gardening and farming."

Her efforts are not going unnoticed. Stevenson said her list of Instagram followers has swelled from 7,000 to more than 20,000 since she began posting gardening tips last July. She said she believes many Black seed business owners like her are driven by the need for education and economic empowerment.

"My business is for all people — we're all human — but I happen to be a Black woman and a business owner, and if someone out there wants to support a Black-owned business, a Black gardening business, we provide them with that opportunity," she said.

Vita's entrepreneurial endeavor — "pushing seeds," as he calls it — seems to be having an impact, too. Online site Thrillist named him one of its "Heroes of 2020" and Oscar-winning actor Natalie Portman included his "Sprout That Life" line, which runs about $19 for three packs of 55 to 100 seeds each, in her 2020 Top Gift Picks list in the December issue of People magazine. Actor Mark Ruffalo followed by publicly donating money to Vita's GoFundMe campaign that supported his seed distribution effort, prompting social media shoutouts from rapper Cardi B and comedian Cedric the Entertainer.

Vita said he sees the fruits of his efforts in the photos people send to him of the food grown from his seeds. He could not be prouder of how he is reaching communities of color, especially Black communities, who he said disproportionately live in food deserts and are plagued by health disparities. "I wanted to change the way that they're eating, let alone change the economic approach," he said.

To date, with crowdfunding support, he has distributed more than 20,000 of his seed packets free of charge. He said he hopes the effort, along with his online vegan cooking and gardening demonstrations, will help inspire more Black people to try a plant-based diet and spark, well, a growing movement.

"If we can flood our community with unhealthy food and drugs, I believe we can also flood it with seeds and love," he said. "We can flood it with positivity and urban farming and juice bars; without gentrification, without the urban renewal replacement."

Chandra Thomas Whitfield: @ChandraWrites

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.

This article was published on Thursday, May 20, 2021 in Kaiser Health News.

By Hannah Recht and Rachana Pradhan and Lauren Weber

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.

Hannah Recht: hrecht@kff.org, @hannah_recht

Rachana Pradhan: rpradhan@kff.org, @rachanadixit

Lauren Weber: LaurenW@kff.org, @LaurenWeberHP