Communities of color have been among the hardest hit during the pandemic. But advocates in Texas say those communities are likely to have a harder time getting the vaccine in the coming months, so they are urging local leaders to step in.
Travis County Judge Andy Brown, the county executive in the Austin area, put together a vaccination event recently. Brown said he'd been hearing concerns that there weren't enough places to get a covid-19 shot on the east side of Austin, which has more Black and Latino residents and more poverty than other parts of the city.
So, Brown asked a hospital for extra doses. And with 600 in hand, he worked with other local officials to set up a temporary drive-thru vaccination site in a southeast Austin parking lot.
"They all realized that we need to get the vaccines in the arms of people who are in the hardest-hit ZIP codes," Brown said. "People who are Latinx, who are African American — and especially who are over 65, because those are the people who get sickest."
When Texas first released its distribution plan, advocates and local officials raised concerns. Twenty-three states, including Texas, are tracking vaccination rates by race, and Texas, like all the others, is vaccinating Black residents at a slower rate.
Texas House Member Sheryl Cole, a Democrat who represents Black and Latino communities in East Austin, said she pointed out that the initial plan had 65 vaccine sites for Austin, but only nine on the east side.
"Without a doubt, we are seeing disparate treatment of distribution and providers," she said.
Part of the reason is that the plan relied heavily on chain stores, such as H-E-B, Kroger, Randalls, Walgreens and CVS. Brown said those big grocery and drugstores just aren't as prevalent in East Austin.
"The fact is, this part of town, frankly, does not have as many H-E-Bs, pharmacies, [and] has a higher uninsured rate," he said.
Mayor Steve Adler said his office has been lobbying state health officials to turn over the bulk of the vaccines to local governments, which know best how to get them to the hardest-hit communities.
"I believe that it goes out much more quickly and goes out to the people who most need it," he said.
And this lobbying has worked. Recently, Texas health officials have started giving vaccines to local health departments, which are set up to vaccinate thousands of people.
But there have been hiccups.
State officials pushed back against city leaders in Dallas who planned to use their hub vaccine distribution solely for Black and brown communities. The city has since decided to abandon that plan, according to The Texas Tribune.
Then there is the issue of scarcity. For example, the week of Jan. 18, Austin officials got about 12,000 doses for a city of about 1 million people.
Jeremy Lopez, who lives in East Austin, signed up to get a vaccine from the city as soon as he could. Lopez had a kidney transplant in 2006 and is in a high-risk group. But he still has no idea when he'll get vaccinated.
"There's no definite time frame of like 'Oh, in a week. Oh, in two weeks,'" he said. "It's like 'Don't call us; we will call you.'"
Local officials are urging people to be patient.
Austin City Council Member Natasha Harper-Madison said she thinks everyone, including state and local government, should have done more planning.
"I am a member of Austin's governing body, and I've got to tell you that I don't think we have done everything we could have to make certain that we were prepared for what we knew was coming," she said.
That includes having plans to prioritize the hardest-hit communities, Harper-Madison said.
Cole said Black and Latino Texans have already been through enough.
"The underserved community already has to deal with economic disparity and loss of jobs with covid — and then to add this additional burden is not good. It's not fathomable," she said.
This story is part of a reporting partnership that includes NPR, KUT and KHN.
MECCA, Calif. — Dust swirled in the air as Luz Gallegos parked her SUV on the side of a dirt road. She had just learned that her aunt died of covid-19 — the third family member to succumb to the disease in only two weeks.
She stepped out of her car at about 11:30 a.m. onto a bell pepper farm in this agricultural community in the Coachella Valley, a little northwest of the Salton Sea.
Gallegos, a daughter of farmworkers who had worked in the fields herself, had only 15 minutes to make what she considered a life-or-death pitch to roughly 20 workers who had just finished a break.
The farm had already seen two workers fall ill to covid.
"We're losing people in our community each day," she said.
Gallegos, now executive director of the immigrant advocacy group TODEC Legal Center, came to dispel myths about the covid vaccines and urge the farmworkers to get vaccinated. Farmworkers, who are among the most vulnerable to covid, are also among the most hesitant to get the shots.
Some worry about the vaccines' safety and potential side effects, or how they could affect people with underlying health conditions, like diabetes. Others express the unfounded rumor that the government will use the vaccines to implant chips into their arms, leading to their being tracked and deported.
"This community lives in fear," Gallegos said. "They don't have any confidence in the government."
A study out in late January from the University of California-San Francisco found that farmworkers and other agricultural workers had the third-highest risk of death during the pandemic in California, after cooks and packaging machine operators.
"That's higher than doctors or nurses," said Alicia Riley, an epidemiology and biostatistics postdoctoral scholar at UCSF who worked on the study. "With vaccination, we now have a new tool available to protect these workers who have endured the highest rate of excess mortality during the pandemic."
Since October, Gallegos has been visiting farms throughout Riverside County.
She just got the first dose of vaccine herself, a detail she shared with the farmworkers gathered around her. "I didn't get any side effects, but some say it feels like a bruise on your arm," she told them in Spanish.
Gallegos had started off the talk by claiming a victory: "We won. They're going to prioritize farmworkers in the first phases of the vaccine."
Gov. Gavin Newsom confirmed last week that farmworkers will be prioritized for the shots, along with healthcare workers, people age 65 and up, and workers in education, child care, emergency services, and the food and agricultural industries.
Diana Tellefson Torres, executive director of the UFW Foundation, said agricultural workers check all the boxes when it comes to vulnerability: They often work in close proximity, travel from farm to farm across county borders, live in crowded housing and in multigenerational households, and lack healthcare. "We know that this is a large task," Tellefson Torres said. "But there are different levels of vulnerability in our society right now, and I can't emphasize enough that we need to take care of those who are nurturing us right now."
When getting vaccinated against covid-19, there’s no sense being picky. You should take the first authorized vaccine that’s offered, experts say.
The newest covid vaccine on the horizon, from Johnson & Johnson, is probably a little less effective at preventing sickness than the two shots already being administered around the United States, from Pfizer-BioNTech and Moderna. On Friday, Johnson & Johnson announced that, in a 45,000-person trial, its vaccine was about 66% effective at preventing moderate to severe covid illness. No one who received the vaccine was hospitalized with or died of the disease, according to the company, which said it expected to seek Food and Drug Administration authorization as early as this week. If the agency authorizes use of the vaccine, millions of doses could be shipped out of J&J’s warehouses beginning in late February.
The J&J vaccine is similar to the shots from Moderna and Pfizer-BioNTech but uses a different strategy for transporting genetic code into human cells to stimulate immunity to the disease. The Moderna and Pfizer-BioNTech vaccines were found in trials last fall to be 94% effective against confirmed covid. They also prevented nearly all severe cases.
But the difference in those efficacy numbers may be deceptive. The vaccines were tested in different locations and at different phases of the pandemic. And J&J gave subjects in its trial only one dose of the vaccine, while Moderna and Pfizer have two-dose schedules, separated by 28 and 21 days, respectively. The bottom line, however, is that all three do a good job at preventing serious covid.
“It’s a bit like, do you want a Lamborghini or a Chevy to get to work?” said Dr. Gregory Poland, director of the Mayo Clinic’s Vaccine Research Group. “Ultimately, I just need to get to work. If a Chevy is available, sign me up.”
So while expert panels may debate in the future about which vaccine is best for whom, “from a personal and public health perspective, the best advice for now is to get whatever you can as soon as you can get it, because the sooner we all get vaccinated the better off we all are,” said Dr. Norman Hearst, a family doctor and epidemiologist at the University of California-San Francisco.
Here are five reasons experts say you should take the J&J shot — assuming the FDA authorizes it — if it’s the one that’s offered to you first:
1. All three vaccines protect against hospitalization and death.
Of the 10 cases of severe disease in the Pfizer trial, nine received a placebo, or fake vaccine, and none of the 30 severe cases in the Moderna trial occurred in people who got the true vaccine. Johnson & Johnson did not release specific numbers but said none of the vaccinated patients were hospitalized or died. “The real goal is to keep people out of the hospital and the ICU and the morgue,” said Dr. Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia. “This vaccine will do that well.”
2. The efficacy levels could be a case of apples and oranges.
The data that Moderna and Pfizer-BioNTech presented to the FDA for their vaccines came from large clinical trials that took place over the summer and early fall in the United States. At the time, none of the new variants of covid — some of which may be better at evading the immune responses produced by vaccines — were circulating here. In contrast, the J&J trial began in September and was put into the arms of people in South America, South Africa and the United States.
Newly widespread variants in Brazil and South Africa appear somewhat better at evading the vaccine’s defenses, and it’s possible a new variant in California — where many J&J volunteers were enrolled — may also have that trait. The J&J vaccine was 72% effective against moderate to severe covid in the U.S. part of the trial, compared with 57% in South Africa, where a more contagious mutant virus is the dominant strain. Another vaccine, made by the Maryland company Novavax, had 90% efficacy in a large British trial, but only about 50% in South Africa. The Moderna and Pfizer-BioNTech vaccines might not have gotten the same sparkling results had they been tested more recently — or in South Africa.
“This vaccine was tested in the pandemic here and now,” said Dr. Dan Barouch, a Harvard Medical School professor whose lab at the Center for Virology and Vaccine Research at Beth Israel Deaconess Medical Center in Boston developed the J&J vaccine. “The pandemic is a much more complex pandemic than it was several months ago.”
Some of that difference in performance also could be attributable to different patient populations or disease conditions, and not just the mutant virus. A large percentage of South Africans carry the human immunodeficiency virus, or HIV. Chinese vaccines have performed wildly differently in countries where they were tested in recent months.
“We don’t know which vaccines are the Lamborghinis,” Poland said, “because these aren’t true head-to-head comparisons.”
3. Speed is of the essence.
To stop the spread of covid, the mutation of the virus that causes it and the continued pummeling of the economy, we all need to be vaccinated as quickly as possible. The inadequate supply of vaccines has been felt acutely.
Dr. Virginia Banks’ 103-year-old mother is one of the few living Americans who were around for the country’s last great pandemic — the 1918 influenza — yet she’s been unable to get a covid vaccination, said Banks, a physician with Northeast Ohio Infectious Disease Associates in Youngstown.
Patients can’t be picky about which vaccine they accept, Banks said. People “need to get vaccinated with the vaccines out today so we can get closer to herd immunity” to slow the spread of the virus.
Banks has worked hard to promote covid vaccines to skeptical minority communities, frequently appearing on local TV news and making at least two presentations by Zoom each week. Blacks to date have been vaccinated against covid at much lower rates than whites.
“There’s a downside to waiting,” said Dr. William Schaffner, a professor of preventive medicine and health policy at Vanderbilt University Medical Center. Delaying vaccination carries serious risks, given that more than 3,800 Americans have been dying every day of covid.
4. The J&J vaccine appears to have some real advantages.
First, it seems to cause fewer serious side effects like the fever and malaise suffered by some Pfizer-BioNTech and Moderna vaccine recipients. High fever and dehydration are particular concerns in fragile elderly people who “have one foot on the banana peel,” said Dr. Kathryn Edwards, scientific director of the Vanderbilt Vaccine Research Program. The J&J vaccine “may be a better vaccine for the infirm.”
Many people may also prefer the J&J shot because “it’s one and done,” Schaffner said. Easier for administrators too: just one appointment to schedule.
5. The J&J vaccine is much easier to ship, store and administer.
While the Johnson & Johnson vaccine can be stored in regular refrigerators, the Pfizer-BioNTech vaccine must be kept long-term in “ultra-cold” freezers at temperatures between minus 112 degrees and minus 76 degrees Fahrenheit, according to the Centers for Disease Control and Prevention.
Both the Moderna and Pfizer-BioNTech vaccines must be used or discarded within six hours after the vial is opened. Vials of the J&J vaccine can be stored in a refrigerator and restored for later use if doses remain. “Right now we have mass immunization clinics that are open but have no vaccine,” said Offit. “Here you have a single-dose regime with easy storage and handling.”
A person’s address — not their personal preference — may determine which vaccine they receive, said E. John Wherry, director of the Institute for Immunology at the University of Pennsylvania’s Perelman School of Medicine. He pointed out that the Johnson & Johnson vaccine is a simpler choice for rural areas.
“A vaccine doesn’t have to be 95% effective to be an incredible leap forward,” said Wherry. “When we get to the point where we have choices about which vaccine to give, it will be a luxury to have to struggle with that question.”
It started as a group of college friends who wanted to help during the pandemic. They had tech skills, so they used 3D printers to make face shields. Then they organized as a nonprofit, Philly Fighting Covid, and opened a testing site in a Philadelphia neighborhood that didn't have one yet.
The organization's leader, Andrei Doroshin, had bigger ambitions. Even before the first coronavirus vaccine was authorized, the 22-year-old graduate student at Drexel University planned to get involved, although he has no background in healthcare.
On the evening of Oct. 7, Doroshin gathered 15 of the nonprofit's staff members and volunteers for a meeting on a Philadelphia rooftop to show them a fancy PowerPoint. More people joined via livestream to watch him unveil his plan to vaccinate the city of Philadelphia.
In slide after slide, he laid out his vision with colorful graphics and maps, covering all aspects of a vaccination system, from scheduling to staffing to safety protocols.
The marketing plan hinged on inoculating local celebrities like rapper Meek Mill, a Philadelphia native, to attract his fan base.
“This is a wholly Elon Musk, shooting-for-the-heavens type of thing,” Doroshin said. “We're gonna have a preemptive strike on vaccines and basically beat everybody in Philadelphia to it.”
Doroshin described scaling up until they were managing five mass vaccination sites and 20 smaller sites scattered throughout the city. He claimed they could vaccinate between 500,000 and 1.5 million people. And they would make a lot of money doing it.
“This is the juicy slide,” said Doroshin, clicking over to the financing plan. “How are we gonna get paid?” He explained that the vaccine doses were free, provided by the federal government. But Philly Fighting Covid could bill insurance companies $24 a dose for administering it.
“I just told you how many vaccines we want to do — you can do the math in your head,” he said.
A month later, Doroshin made a similar presentation, complete with colorful maps and a $2.7 million projected budget, to the Philadelphia City Council. He said his team at Philly Fighting Covid had begun submitting plans for building out five high-capacity sites that could each take up to 10,000 patients a day.
Philly Fighting Covid's promise of efficiently vaccinating the population was an alluring one as city leaders were desperate to pull out of the pandemic. Doroshin told NBC's “Today” show that his company didn't think like a traditional medical institution. “We're engineers, we're scientists, computer scientists, we're cybersecurity nerds. We think a little differently than people in healthcare do.”
“We took the entire model and just threw it out the window,” Doroshin added. “We said to hell with all of that. We're going to completely build on a new model that is based on a factory.”
By Jan. 9, Doroshin had a deal with the Philadelphia Department of Public Health and Mayor Jim Kenney's administration. The city never signed a formal contract with Philly Fighting Covid or gave the organization any money, but it did provide its unofficial sanction and publicity.
Most important, the city turned over part of its vaccine allotment to the group and helped it find recipients by sharing lists of residents who were newly eligible for the vaccine, based on the city's own prioritization scheme. The city relied on Philly Fighting Covid's registration as a vaccine provider with the Centers for Disease Control and Prevention.
On Jan. 8, Doroshin and Kenney stood side by side at a press conference to kick off the first mass vaccination clinic at the Pennsylvania Convention Center. It was targeted at healthcare workers not affiliated with major hospitals, such as home health aides or doctors, nurses or therapists in private practice.
“What you see here is the problem that we've been solving for six months,” Doroshin told reporters. “This is the problem of vaccinating an entire population of people on a scale that has never been seen before in the history of our species.”
Kenney was also hopeful that the arrangement would help diversify the racial breakdown of vaccine recipients. At that point, only 12% of vaccinated Philadelphians were Black — in a city where 44% of residents are Black.
“Equitable distribution of this vaccine is extremely important to our entire administration,” said Kenney at the Jan. 8 kickoff event.
But in an early sign of trouble, Philly Fighting Covid failed to verify its progress on the equity goal. After that first vaccine event, at which 2,500 doses were administered, City Council President Darrell Clarke requested the demographic breakdown of the recipients.
The health department told him that Philly Fighting Covid had somehow lost all the racial and ethnic data for the patients. The group was blaming “a glitch” in the Amazon cloud. Still, the city continued to turn over thousands of vaccine doses to Philly Fighting Covid.
As the startup continued to hold clinics, WHYY began investigating the organization and its founder.
Reporters uncovered other serious problems, and it soon became clear that the group's logistical strengths and self-promotional flair, which had once made the startup seem so compelling, weren't working. The investigation revealed that in December, just before Philly Fighting Covid began its vaccination work, it reorganized and became a for-profit company called Vax Populi.
Philly Fighting Covid had spent months organizing city-funded testing events — at which residents reported good experiences. But in January, it abruptly shuttered those operations, leaving partner organizations in the lurch. The group posted this decision on social media, just a few days after the convention center kickoff, at which Doroshin had promised to open two new testing sites and to start offering free rapid testing.
Several groups that had been partnering with Philly Fighting Covid on testing events claim they received little or no notice, jeopardizing plans for testing in communities of color.
“They completely ghosted us,” said Cean James, pastor of Salt & Light church in Southwest Philadelphia, which had been planning a series of pop-up testing events with Philly Fighting Covid.
Michael Brown had been working with the group to organize a testing event on Martin Luther King Jr. Day. He said Doroshin told his group that testing wasn't important anymore.
“The statement he made was very clear: 'I don't believe that testing is relevant anymore. People don't follow the instructions, people don't do what they're supposed to do, and all it does is … cause panic,'” Brown said later.
There were signs that Doroshin wasn't that concerned about standard clinical protocols. Employees with more clinical experience than he had said he brushed off technical questions as bothersome and approached the vaccination effort as if he were a tech mogul focused on disrupting norms.
“Stop using best practices,” Doroshin said during a recent interview with HealthDay. “I think the old best practices in healthcare, in terms of intramuscular injections, were written for a hospital visit that would take 30 minutes, that you needed to do a bill for as a provider visit. Those best practices can mostly go out the window.”
The city soon began to back away from the group. At the initial launch, the city promoted Philly Fighting Covid's pre-registration website and encouraged everyone to sign up. Just a week later, officials changed course and claimed the city had nothing to do with the website. The conflicting messages caused confusion among the 60,000 Philadelphians who had signed up thinking it was an official city site. Many were left worried about what would happen to their personal information. The city then launched its own pre-registration site.
The process Philly Fighting Covid used to schedule appointments was also flawed. Anyone who received a hyperlink could sign up for a time slot, which prompted many who received it to assume they were automatically eligible, even though at that time the clinic was technically only for healthcare workers and the elderly.
Some who received the link in error went through with their appointments. Others backed out when they learned it wasn't their turn. Still more had their doses canceled by Philly Fighting Covid upon arrival.
When Jillian Horn came to get a shot, she said she saw seniors waiting in line get turned away because of booking errors.
“There was literally 85-year-olds, 95-year-old people standing there, with printed appointment confirmations saying, 'I don't understand why I can't get vaccinated,' ” Horn recalled.
On Jan. 23, volunteer nurse Katrina Lipinsky was helping at one of Philly Fighting Covid's vaccination events. She said that about half an hour before the event's scheduled end, staffers started telling volunteers and other workers to call anyone they knew to come in for a shot because there were going to be extras.
Then she saw Doroshin grab a handful of vaccines and stuff them in his bag, along with the corresponding CDC vaccination record cards.
“The idea of somebody who's not a licensed healthcare professional vaccinating their own friend, with or without observation, period, that certainly was not the right thing to do,” Lipinsky told WHYY.
Doroshin initially denied Lipinsky's account but eventually admitted he took doses home during a Jan. 28 interview on NBC's “Today” show. The following day at a press conference, he said he had vaccinated his girlfriend, but no one else. He did not explain how Philly Fighting Covid ended up with extra doses after it turned away people, including seniors, who were in line waiting for the vaccine that same day.
The city cut ties with Philly Fighting Covid on Jan. 25, citing the company's abandonment of its testing work and the company's new privacy policy, which would have allowed it to sell patient data.
Health commissioner Dr. Tom Farley has been asked to explain what happened. Doroshin approached with a vaccine plan, he said, that met the city's health standards.
“I hope people can understand why on the surface this looked like a good thing,” Farley said. “In retrospect, we should have been more careful with this organization.”
The city had other options for a mass vaccination partner. Philadelphia is home to four major health systems, including the University of Pennsylvania medical system, which said it was prepared to ramp up community vaccination efforts as far back as November, well before the city started working with Philly Fighting Covid.
In a press conference at his apartment building Friday, Doroshin called the city's decision to dissolve the partnership “dirty power politics” and alleged it was part of a political conspiracy. He said that if given the chance, he wouldn't have done anything differently.
This story is part of a partnership that includes WHYY, NPR and KHN.
The percentage of covid patients who become long haulers is hard to pin down — in part because many early covid patients were not tested in time to detect the virus.
This article was published on Tuesday, February 2, 2021 in Kaiser Health News.
Four weeks after San Diego pediatric nurse Jennifer Minhas fell ill with covid-19 last March, her cough and fever had resolved, but new symptoms had emerged: chest pain, an elevated heart rate and crushing fatigue. Her primary care physician told her she was just anxious, and that none of her other covid patients had those issues. "That wasn't what I needed to hear," Minhas said.
At times, she's been too exhausted to hold up her head. "I was kind of a zombie for months, shuffling around unable to do much of anything."
The clinical term for the flattening fatigue Minhas describes is "post-exertional malaise." It is a common symptom among patients who have not recovered from covid. It is also consistent with a standard feature of another chronic illness: myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS.
ME/CFS patients also report cognitive impairment — "brain fog" — and orthostatic intolerance, in which standing upright produces a racing heart rate and lightheadedness. Minhas has experienced these symptoms, as have many other "long haulers," the tens of thousands of post-covid patients who haven't recovered.
The percentage of covid patients who become long haulers is hard to pin down — in part because many early covid patients were not tested in time to detect the virus. But "long covid" is potentially an enormous problem. A recent study of 1,733 covid patients in Wuhan, China, found three-quarters of them still had symptoms six months after being released from the hospital.
As of January, doctors had documented more than 21 million cases of covid in the United States. "If just 5 percent develop lingering symptoms,'' — about 1 million cases — "and if most of those with symptoms have ME/CFS, we would double the number of Americans suffering from ME/CFS in the next two years," Harvard Medical School professor Dr. Anthony Komaroff wrote recently in the Harvard Health Letter.
The cause of ME/CFS is unknown, but multiple studies have found it follows acute infections with viruses — everything from the 1918 "Spanish" flu to Ebola. "A certain percentage of people don't recover," said Leonard Jason, a researcher at DePaul University.
Scientists are trying to figure out the mechanisms of the disease and why it develops in certain people and not others. According to the Centers for Disease Control and Prevention, ME/CFS shares certain characteristics with autoimmune diseases, in which the immune system attacks healthy tissue in the body. Multiple studies are underway to explore this and other potential causes.
Doctors who specialize in treating ME/CFS are beginning to pivot to long-covid patients. Dr. Peter Rowe, whose clinic at Johns Hopkins is one of the country's leading centers for ME, has so far seen four long haulers at his practice. "All of them meet the criteria for ME/CFS," he said.
Despite years of research, there is no biomarker for ME/CFS, so blood tests are ineffective as a diagnostic tool. Rowe's approach is to tease apart which symptoms may have identifiable causes and treatments, and address those. One example: A 15-year-old boy Rowe was treating for ME/CFS was so sick that even sitting upright a few hours a day exhausted him and made schoolwork virtually impossible. The boy's heart rate while lying down was 63; when he stood up it skyrocketed to 113. This effect is known as postural orthostatic tachycardia syndrome, or POTS.
Rowe knew from interviews with the boy's mother that he had an extraordinary appetite for salt. So much so that he kept a shaker at his bedside and would regularly sprinkle salt on his hand and lick it off.
Rowe hypothesized that he was dealing with a sodium retention problem. To counter it, he prescribed the steroid fludrocortisone, which promotes sodium resorption in the kidneys. Three weeks later, the boy had recovered so dramatically he was helping a neighbor with a landscaping project, pushing rocks around in a wheelbarrow. "He was a different kid," Rowe said.
Such a course of treatment would not be applicable in a typical case, Rowe said, "but it does emphasize the potential for patients to get a substantial improvement in their CFS symptoms if we address the orthostatic intolerance."
Beginning in the 1980s, many doctors treating ME/CFS prescribed a combination of cognitive behavioral therapy and an exercise regimen based on a now discredited assertion that the illness had no biomedical origin. That approach proved ineffective — patients often got demonstrably worse after pushing beyond their physical limits. It also contributed to a belief within the medical establishment that ME/CFS was all in your head, a narrative that has largely been refuted.
"ME/CFS was never a mostly behavioral problem, although it has been cast as that," Rowe said.
Answers have been slow to arrive, but attitudes about the illness are beginning to change. Advocates of patients point to a 2015 report by the Institute of Medicine that called ME/CFS "a serious, chronic, complex, systemic disease" and acknowledged that many doctors are poorly trained to identify and treat it. The CDC says as many as 90% of the estimated 1 million U.S. patients with ME/CFS may be undiagnosed or misdiagnosed.
The problem is exacerbated by a reluctance to provide health care coverage to patients whose illnesses aren't easily diagnosed, said Joe Dumit, a medical anthropologist at the University of California-Davis. "Making patients prove they are not just suffering, but suffering from a documented illness, saves money. So, I worry about the way in which covid long haulers will be treated as the numbers rise." The best treatment in many cases may be rest or reduced workload, "which translates into some form of disability coverage," he said.
But since long haulers typically sicken immediately after having had a testable viral infection, perhaps they won't be disbelieved, Rowe said — after all, their illness "starts as a 'real' illness.''
Long haulers may also help researchers better understand the onset of the illness because they are being studied as their symptoms emerge, while ME/CFS patients often aren't seen until they've been ill for two or more years, he said.
"There's no question that this legitimizes in many ways the experience of people with ME/CFS who have felt they weren't believed," DePaul's Jason said.
In July, the nonprofit Solve ME/CFS launched an initiative aimed at understanding similarities between long haulers and patients with ME/CFS. Dubbed You+ME and underwritten by the National Institutes of Health, it includes an app that enables registrants to record their symptoms and their effects over time.
Such efforts may further diminish the tendency of doctors to ignore patients' complaints of symptoms that seem to have no evident cause, said Lauren Nichols, 32, a long hauler with a long list of miseries — everything from severe gastrointestinal problems to shingles in her left eye.
"I was one of those people who falsely believed that if you can't see the illness it's psychosomatic," said Nichols, who helps administer Body Politic, a support group for long-covid patients that has found common cause with the ME/CFS community.
"Now I'm living it," she said. "If I have one message for doctors, it's 'Believe your patients.'
California Gov. Gavin Newsom, struggling to salvage a once-bright political future dimmed by his mishandling of the covid crisis, tapped nonprofit health insurer Blue Shield of California last week to allocate the state's covid vaccine.
The company has thus far said little about how it plans to reorganize a gargantuan and complicated vaccination campaign that has befuddled and frustrated public health officials and vaccine seekers alike.
The agreement with Blue Shield was made under an emergency authorization, circumventing the customary bidding process. Kaiser Permanente, California's largest health plan, will also assist in the effort under an emergency contract. (KHN is not affiliated with Kaiser Permanente.)
Blue Shield's job will be to develop and manage a network of providers to distribute and administer vaccines at numerous venues statewide, including mobile clinics, major vaccination sites and the homes of at-risk residents, according to details released by the state Monday. Blue Shield will also design a system of financial incentives to encourage providers to use their vaccine supply more quickly, with a particular focus on those disproportionately hit by the pandemic. And it will create a real-time data aggregation and reporting system.
Newsom hopes that replacing the patchwork of county-by-county efforts with a centralized system will accelerate the pace of vaccinations.
The vaccine rollout has been plagued by early stumbles, including confusing appointment systems; shifting rules on vaccine eligibility; long lines that have kept older people waiting for hours, leading some to abandon their quest and go home unvaccinated; and faulty data collection that left state officials unable to say whether Newsom had met his goal of administering 1 million doses in 10 days.
Some healthcare experts cautiously welcomed the new plan, saying Blue Shield could help bring more structure and efficiency to the enterprise of vaccinating California's nearly 40 million residents.
Blue Shield is the third-largest health insurer in California, after Kaiser Permanente and Anthem Blue Cross. It contracts with a large number of hospitals, medical groups, pharmacies and other providers across the state. Newsom is counting on the insurer's extensive web of relationships to help get vaccines out more quickly and effectively.
Since Blue Shield "has got an organization with a statewide footprint and knowledge of the geography and the population, it seems they could think through all the scheduling and logistics," said Glenn Melnick, a professor of health economics at the University of Southern California's Sol Price School of Public Policy.
A coalition of skeptical groups representing county and local health officials warned Newsom on Friday that his plan "threatens to eclipse our members' core local public health expertise and functions." Some health experts suspected the decision to bring in Blue Shield was related to the insurer's history as a major Newsom donor.
Here are answers to five key questions about Blue Shield's participation in the covid vaccination program:
1. Is Blue Shield up to the task?
Time will tell. Despite its experience and clout in the healthcare industry, Blue Shield has never attempted anything of such magnitude — with so much riding on it and so many eyes watching.
Skeptics note that Blue Shield's track record in delivering healthcare to its enrollees has not always been stellar. Its rollout of Affordable Care Act health plans in 2014 was beset by errors, and it has been fined by regulators for improper coverage cancellations and consumer grievance violations, among other things. In 2015, it lost its state tax-exempt status following a controversy over large premium hikes and its hefty financial reserves.
In 2019, the most recent year for which data is available, Blue Shield had the second-highest rate of consumer complaints — after UnitedHealthcare — among the nine largest California health plans regulated by the state's Department of Managed Healthcare. And it got the lowest possible score on access to care in the 2019-20 health plan ratings by the National Committee for Quality Assurance.
2. Was Newsom's decision politically motivated?
It's hard to say definitively without having been a fly on the wall, but Blue Shield is on very good terms with the governor.
It gave about $1 million to support Newsom's 2018 gubernatorial bid, according to filings with the California Secretary of State Office. Last year, the company contributed an additional $31,000 to Newsom's 2022 campaign for governor, as well as $269,000 to his ballot measure committee.
"The reality, I think, is that it reflects the tight relationship Blue Shield has built with Newsom, not its capabilities," said Michael Johnson, a former Blue Shield executive who resigned from the company in 2015 and is now one of its fiercest critics.
In addition, Blue Shield's CEO, Paul Markovich, was co-chair of Newsom's covid testing task force from March to June last year – experience that some healthcare experts cited as an asset in the insurer's new role.
Another possible factor in the governor's decision to shake things up is his political need to turn things around quickly, with an effort to recall him gaining momentum from the vaccination chaos.
3. Is Blue Shield well placed to accomplish the equitable distribution of vaccines to underserved communities that Newsom called "the North Star" of the new centralized system?
These communities are not among Blue Shield's core constituency. It has a small presence in Medi-Cal, the state-funded insurance program for people with low incomes — and only in Los Angeles and San Diego counties. But it does have relationships with numerous hospitals and other providers that serve Medi-Cal patients. It will also need to collaborate with the state's counties.
"It's critical that Blue Shield be required to work hand in hand with local public health jurisdictions to reach vulnerable populations that do not have the same level of access to traditional healthcare," said Sara Bosse, director of Madera County's Department of Public Health.
4. What could have motivated Blue Shield to tackle such an onerous assignment?
Its payment from the state will be at cost, so there's no apparent profit motive. Though Blue Shield could theoretically leverage its vaccine decision-making power to the advantage of its own business, healthcare experts doubt it would behave in such a cynical manner.
"Our goal is to do all we can to help overcome this pandemic, and it is our commitment to do that work at cost without making a profit from the state," Blue Shield said in a news release Friday.
Melnick said he knew of no other health plan in the country that has jumped in to help public officials with testing or vaccinations. If Blue Shield succeeds, "it could be an answer for a lot of states and could put pressure on other plans to step up," he said. By the same token, Blue Shield will probably catch the blame if vaccine supply shortages continue.
Johnson, the former Blue Shield executive, suggested a motive other than pure selflessness. "I think the biggest value to Blue Shield is the prestige of it," he said. "It implies Blue Shield has the skill and integrity to be entrusted with something this vital to tens of millions of people."
5. How will Blue Shield's results be measured?
It shouldn't be too difficult to determine whether the insurer is meeting two key goals the state set for it: to speed up the pace of vaccinations and to focus in particular on underserved communities. Both can be measured.
The bar for success is pretty low, Johnson said. "The whole thing has been managed so disastrously," he said, "that it wouldn't be difficult for Blue Shield to improve on the state's performance thus far and come out of this looking like it did a good job."
California Healthline political correspondent Samantha Young and KHN correspondent Anna Almendrala contributed to this report.
For weeks, Americans have watched those who are well connected, wealthy or crafty "jump the line" to get a vaccine, while others are stuck, endlessly waiting on hold to get an appointment.
This article was published on Tuesday, February 2, 2021 in Kaiser Health News.
The Biden administration's much-needed national strategy to end the covid-19 pandemic includes plans to remedy the chaotic vaccination effort with "more people, more places, more supply." The Federal Emergency Management Agency will open more vaccination sites, the government will buy more doses, and more people will be immunized. Still, by all estimates, the demand for vaccines will far exceed the supply for months to come.
For weeks, Americans have watched those who are well connected, wealthy or crafty "jump the line" to get a vaccine, while others are stuck, endlessly waiting on hold to get an appointment, watching sign-up websites crash or loitering outside clinics in the often-futile hope of getting a shot.
To eliminate this knock-out-your-neighbor race to score a vaccine, the administration needs to find ways to build trust in the system. It will take more than "more people, more places, more supply" to end the Darwinian competition and restore confidence and order.
That's in part because, desperate to end their own pandemic nightmare, many of our most respected institutions and politicians have behaved badly. Of course, hospitals have performed heroics during the pandemic — turning orthopedic wards into covid intensive care units, canceling elective surgeries, bringing retired healthcare workers back to help, all the while losing thousands of staff members to the virus. But some also have behaved selfishly during the vaccine rollout.
When the vaccine was released in December, the Centers for Disease Control and Prevention recommended that healthcare personnel and nursing home residents receive the first doses. It was pretty clear whom the agency had in mind for "healthcare personnel": those who deal directly with patients, including doctors, nurses, technicians, janitors and the people who deliver meals, along with those who might come into contact with the virus, like security guards and laundry staff, as part of their jobs.
But many hospitals interpreted the recommendation broadly, inoculating their entire staff — public relations departments, administrators, programmers, laboratory scientists and, sometimes, their boards. They offered vaccines to psychiatrists who were seeing their patients on Zoom. They vaccinated radiologists who were reading films at home. Some of those immunized were at the upper end of the medical income totem pole, people who had sat out the pandemic at country homes.
Many hospitals pay no taxes because the care they provide benefits their communities. In their vaccine rollout, many of those were not thinking about their communities, only about themselves.
That behavior set a precedent for the national chaos that followed. "From soup to nuts, the whole thing has fallen apart," said Arthur Caplan, one of the country's leading medical ethicists. What Caplan called "unfair priority" left him "incredibly irritated"; ethics were often absent from the algorithm. "Once you've lost public confidence in the fairness of the process, it undermines willingness to follow the rules," he said.
Once random people working remotely got shots, those outside medical centers played whatever cards they had, too. Therapists who were teleworking claimed eligibility. Politicians and their spouses — sometimes former spouses — got vaccines.
People offered donations in exchange for vaccinations. Health officials and private doctors tipped off friends about when new vaccine doses would be released. On screening forms, people checked the boxes needed to get a vaccination appointment and in some places were immunized even after their duplicity was discovered.
Pity the rule-followers: Many older Americans who are not tech-savvy or lack internet access have been unable to get slots. It might be theoretically possible to sign up by phone, but by the time you get through, the newly released appointments may be gone. Those without a child or grandchild to help secure an appointment could be out of luck.
Hospitals, clinics and vaccination sites have explained away bad behavior by saying they didn't want to waste unused vaccines. Many have experienced higher-than-expected refusal rates from those expected to get a shot.
I don't blame the lucky recipients; after all, hospitals would just offer the unused vaccine to the next person on the list. But I do blame whoever it was in the hospital hierarchy or the health clinic who decided to distribute and redeploy vaccines this way.
If there were unexpected extras, couldn't hospitals have instead walked those doses to patients in the geriatric, hypertension or diabetes clinics? Or offered them to one of the many nursing homes and assisted living facilities whose workers and residents have still not been vaccinated, though they, like healthcare personnel, were the Centers for Disease Control and Prevention's top priority?
Gregg Gonsalves, who is 57, HIV-positive and an epidemiologist at the Yale School of Public Health, said he faced an ethical quandary when he was notified of his eligibility for the vaccine; he was unsure whether to sign up. His 86-year-old mother has not gotten one yet.
"Ethicists are saying, 'if offered, take it,' but stepping in line in front of my own mother? I know speed is of the essence in getting shots into arms, but this is entrenching gross inequities," Gonsalves said. (He declined to say what his decision was.)
The problem is that, often, people are not really being "offered" the vaccine; in some cases, they are grabbing it through position, influence or deceit. They are, in the abstract, taking it from someone perhaps more in need — a subway worker, a high-risk patient, maybe even their own mother.
Now, the new administration is coordinating with states to set up more mass vaccination sites. That's great. But the United States has allowed its public health system to become a hollowed-out underfunded mess, and many vaccination clinics are being run and staffed by contracted private companies. And the private sector has so far proved too vulnerable to private favoritism.
Until the supply is sufficient, the government needs to give the shots to the people and places that need it most, and find ways to ensure that the plan is followed; the system could prioritize ZIP codes that have high covid-19 infection rates or target low-income populations who might otherwise have a difficult time securing an appointment.
In Britain, citizens are notified, according to risk group, when it is their turn to book an appointment. They don't have to play knock-out-your-neighbor to score one. We shouldn't either.
Ethnic variations have been suggested for years, but there is still little guidance given to Americans of different backgrounds on how to eat more healthfully.
This article was published on Monday, February 1, 2021 in Kaiser Health News.
The U.S. Department of Agriculture and the Department of Health and Human Services have once again developed new food guidelines for Americans that urge people to customize a diet of nutrient-dense food. For the first time, they make recommendations for infant nutrition and for different stages of life.
But, as in past iterations, they lack seasoning. They do not acknowledge the nuances of culture and ethnicity at the heart of how Americans feed themselves.
Congress requires a revision of these guidelines every five years to ensure they reflect the best available science and respond to the general population’s health needs.
Ethnic variations have been suggested for years, but there is still little guidance given to Americans of different backgrounds on how to eat more healthfully.
“There’s different ways you can be racist,” said Esosa Edosomwan, a certified nutrition specialist and behavioral coach in Washington, D.C. “You can be racist by omitting people, by making guidelines that only cater to a specific group.” Edosomwan — a Nigerian American also known as the Raw Girl — began her nutrition journey while trying to find a diet that would help alleviate persistent acne. She found a raw food class and began writing about her food-as-medicine reeducation on her blog, Raw Girl Toxic World.
“I was trying to figure out what I could become that would allow me to treat people with nutrition,” she said. “I saw mostly white women in this field that were celebrity nutritionists.”
“A white dietitian, she’s probably going to tell you to have some Greek yogurt with a handful of almonds and a serving of protein the size of your fist, when what you really want is egusi soup,” Edosomwan said, referring to the West African dish made from the ground, nutrient-dense egusi seed, vegetables and meat or fish. Food is a big part of culture, and you can’t dismiss where a client comes from, she said. Her clients are encouraged to cook within their culture, but to make changes to ingredients when needed to improve nutritional quality.
“These guidelines are completely incompatible with us achieving our best health,” Edosomwan said of the government guidelines. Statistics bear this out. According to a 2017 JAMA study, nearly half of all U.S. deaths from heart disease, stroke and Type 2 diabetes may be attributed in part to poor diet. These health conditions disproportionately affect people of color. For instance, 11.7% of Black people, 12.5% of Hispanics and 9.2% of non-Hispanic Asians have been diagnosed with diabetes, versus 7.5% of non-Hispanic whites, according to the 2020 National Diabetes Statistics Report.
The USDA boasts a long history of providing “science-based dietary guidance to the American public” and frequently revising it. It goes back to before World War II. An attempt to correct overeating came with the “Food Pyramid” — first published in 1992. The recommendations have more recently been branded simply as “My Plate,” with an app that can be downloaded to any mobile device. But simplifying the recommendations may make them less relevant.
“Culture is everything,” said Inez Sobczak, certified nutritionist and owner of Fit-Nez in Arlington, Virginia. Sobczak was born in Miami to Cuban refugees and has been a nutritionist for 15 years, specializing in weight loss, hormone management and emotional and crisis eating.
While USDA guidelines can’t account for every food culture, Sobczak said, they could be more inclusive. And while she can’t create a new food pyramid overnight — it’s a more complicated process than one would think — she tries to teach people of color how to eat better.
Oldways, a Boston-based organization, has been trying for decades. It first developed a Mediterranean food pyramid in 1993 and has since created charts for African, Latin American and Asian diets, as well as ones for vegetarians and vegans. It also offers classes, such as their six-week Taste of African heritage program. Kelly Toups, director of nutrition at Oldways, said the organization also participates in sessions with the USDA. But not much has changed.
“It would be great to see more cultural representations more explicitly shown in the guidelines,” she said.
Why has it never happened? Partly because the process is elaborate: A government committee of about 20 scientists and health experts study the National Health and Nutrition Examination Survey. The survey attempts to discover what people are eating and how healthy they are. The interviews, conducted in either English or Spanish, leave out Americans who speak other languages.
Next, the committee conducts “food pattern modeling” by looking at different food groups, the nutrients they provide and how much of each group is needed at each stage of life to establish recommendations.
These recommendations are set by age and gender but do not consider variables such as ethnicity, geographic location or access to healthy foods. “If I had to guess, you’re mostly looking at things that are available in typical grocery stores in the U.S.,” said Sarah Reinhardt, the lead food systems and health analyst in the food and environment program at the Union of Concerned Scientists.
In July the USDA released a whopping 835-page scientific report that formed the basis for the 2020-2025 Dietary Guidelines, released at the end of December.
Wait, there’s more. The federal committee also examines piles of food research. But it cannot evaluate research that isn’t available. Vegetarian and Mediterranean diets have been rigorously examined, but not many studies are looking at West African or Native American diets, for example.
The USDA acknowledges this gap. In the 2020 report, the members highlighted the issue. “Nutrition science would benefit from scientists in the field conducting primary research in more diverse populations with varying age groups and different racial, ethnic and socioeconomic backgrounds,” a USDA spokesperson said.
Still, the food industry dominates and guides the discussion. Due to a lack of public funding, Reinhardt said, a lot of nutrition research is funded by industry. “Science isn’t unbiased. It really depends on who is setting the agenda,” she said.
One issue is that the African American diet isn’t a monolith. “There are many immigrants in this country who are Black but hail from different cultural backgrounds,” Edosomwam said.
For instance, the African diet involves lots of tubers — things like yams and cassava, she said. But some African American diets, especially those traced back to slavery, are based on the “soul food” concept, which comes from the practice of making meals from leftover scraps that slave owners would allow them to eat — foods such as pig intestines, called chitterlings.
“Cultural foods and traditions matter,” she said. But part of the challenge is helping people “reimagine these dishes to make them healthier by changing the ingredients and creating new traditions.” Unfortunately, she added, “there’s no plant-based substitute for chitterlings.”
Healthcare — and how much it costs — is scary. But you're not alone with this stuff, and knowledge is power. "An Arm and a Leg" is a podcast about these issues, and its second season is co-produced by KHN.
Lawyer Jeff Bloom used to be the person whom medical providers and debt collectors would hire to represent them in court. "I was a bad guy, for sure," he said.
Then, a few years ago, he switched sides. Bloom now represents consumers and, in this episode, shares what he knows. He said consumers have more rights than they may realize, although enforcing those rights may be tough.
One other piece of advice:
"Be a good guy. Don't be threatening. Don't yell at people," Bloom said. "Judges are your audience. And if you're a good guy, they may help you out."
Elders who can drive — or who can get other people to drive them — are traveling to locations where vaccines are available, crossing city or county borders to do so.
This article was published on Monday, February 1, 2021 in Kaiser Health News.
A divide between "haves" and "have-nots" is emerging as older adults across the country struggle to get covid-19 vaccines.
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.
Seniors with family members or friends to help them are getting vaccine appointments, even if it takes days to secure them. Those without reliable social supports are missing out.
Elders who can drive — or who can get other people to drive them — are traveling to locations where vaccines are available, crossing city or county borders to do so. Those without private transportation, are stuck with whatever is available nearby.
Older adults who are comfortable with computers and have internet service are getting notices of vaccine availability and can register online for appointments. Those who can't afford broadband services or don't use computers or smartphone apps are likely missing out on information about vaccines and appointments.
The extent of this phenomenon has not been documented yet. But experts are discussing it on various forums, as are older adults and family members.
"I'm very concerned that barriers to getting vaccines are having unequal impact on our older population," said Dr. XinQi Dong, director of the Institute for Health, Health Policy and Aging Research at Rutgers University.
Disproportionately, these barriers appear to be affecting Blacks and Hispanic elders as well as people who are not native English speakers; older adults living in low-income neighborhoods; seniors who are frail, seriously ill or homebound; and those with vision and hearing impairments.
"The question is 'Who's going to actually get vaccines?' — older adults who are tech-savvy, with financial resources and family members to help them, or harder-to-reach populations?" said Abraham "Ab" Brody, an associate professor of nursing and medicine at New York University.
"If seniors of color and people living in poor neighborhoods can't find a way to get vaccines, you're going to see disparities that have surfaced during the pandemic widening," he said.
Preliminary evidence from an analysis by KHN indicates this appears to be happening. In 23 states reporting vaccine data by race, Blacks are being vaccinated at a far lower rate than whites, based on their share of the population. The data on Hispanics suggests similar disparities but is incomplete.
Although the data is not age-adjusted, Blacks and Hispanic seniors have been far more likely to become seriously ill and die from covid than white seniors during the pandemic, other evidence shows.
Myrna Hart, 79, who has diabetes and high blood pressure and lives in Cottage Grove, Minnesota, a southern suburb of St. Paul, is afraid she'll be left behind during the vaccine rollout. Hart, who is Black, is eager to get a shot, but she can't travel to two large vaccination sites for seniors in Minneapolis' northern suburbs, more than 30 miles away.
"That's too far for me to drive; I don't know my way, and I could get lost," she said. "If they have a handful of people who look like me in those places, I would be surprised. I wouldn't feel safe going there by myself."
Family members can't give her a ride. Hart's husband is in a skilled nursing facility, receiving rehabilitation after having a leg amputated due to diabetes. Her son is in the hospital, with complications from kidney disease. A daughter lives in Westchester County, New York.
So far, Hart has had no success getting an appointment online at smaller, closer vaccine locations.
"I don't know how much I can endure this," she said, her voice breaking, as she described her fear of catching covid and her frustration. "I'm afraid they're going to run out [of vaccine] before they get to people my age, now that they've changed the plan to include 65-year-olds who are jumping ahead of us."(Like many states, Minnesota widened eligibility to people 65 and older in mid-January, following recommendations from the federal government.)
Although Hart, a former accountant and bookstore owner, knows her way around computers, many older adults don't.
According to a new survey by University of Michigan researchers, nearly 50% of Black seniors and 53% of Hispanic older adults did not have online "patient portal" accounts with their healthcare providers as of June 2020, compared with 39% of white elders.
What's more, a significant portion of Black and Hispanic older adults lack internet access — 25% and 21%, respectively, according to the Census Bureau.
"It's not enough to offer technological solutions to these seniors: They need someone — an adult child, a grandchild, an advocate — who can help them engage with the healthcare system and get these vaccines," said Dr. Preeti Malani, director of the University of Michigan's National Poll on Healthy Aging.
In Birmingham, Alabama, Dr. Anand Iyer, a pulmonologist who specializes in caring for older adults, runs a clinic for more than 200 indigent patients with various types of chronic lung disease — conditions that put them at risk of becoming seriously ill if they're infected with coronavirus. Seventy percent of his patients are Black, and many are elderly.
"I would estimate 10% to 20% are at risk of missing out on vaccines because they're homebound, live alone, don't have transportation or lack reliable social connections," he said. "Unfortunately, those are the same factors that put them at risk of poor outcomes from covid."
Every week, he gets a call from a 90-year-old Black patient who lives alone in Tuskegee with chronic obstructive pulmonary disease, heart failure, cancer and severe arthritis. "She's old, but she's resilient and she keeps me posted on what's going on," Iyer said.
To the doctor's knowledge, this patient doesn't have children, other family members or friends to help her; instead, she relies on a handyman who comes around every so often. "How in the world is she supposed to get the vaccine?" he wondered.
Kei Hoshino Quigley, 42, of New York City, knows that her parents — Japanese American immigrants, who have lived with her since last March — couldn't have managed without her help.
Although Quigley's 70-year-old father and 80-year-old mother speak English, they have heavy accents and "it can be very hard for people to understand them," she said.
In addition, Quigley's father doesn't know how to use computers, and her mother's eyesight isn't good. "For older people who don't speak English as their native language and who are intimidated by the computer, the systems that have been set up are just nuts," Quigley said.
Knowing they couldn't navigate vaccine registration systems on their own, Quigley spent hours online trying to secure appointments for her parents.
After encountering a host of problems — frequent error messages, information she inputted suddenly getting wiped out on vaccine registration sites, calendars with disappearing-by-the-second appointments, incorrect notices that her parents didn't quality — Quigley arranged for her mother to be vaccinated in mid-January and for her father to get his first shot a few weeks later.
Language issues are also a significant hurdle for older Hispanics, who "are not being offered information on vaccines in a way they understand or in Spanish," said Yanira Cruz, president and chief executive officer of the National Hispanic Council on Aging.
"I'm very concerned that older adults who are not fluent in English, who don't have a family member to help them navigate online, and who don't have access to private transportation are going to be left out" during this rollout, she said.
None of the older adults living in two low-income housing complexes run by her organization in Washington, D.C., and Garden City, Kansas, have received vaccines, Cruz said. "We should be bringing the vaccines to where seniors live, not asking them to take a bus, expose themselves to other people, and try to find their way to a clinic," she said.
Nothing can substitute for a friend or family member determined to make sure an older loved one is protected against covid. Joanna Stolove has played that role for her father, 82, who is blind and has congestive heart failure, and her mother, 74, who has Lewy body dementia.
The couple lives in Nassau County on New York's Long Island and receives 40 hours of care at home each week.
Stolove, a geriatric social worker, took time during work to try to get her father an appointment, but many people don't have that luxury. She works at a naturally occurring retirement community in Morningside Heights, a diverse neighborhood on the Upper West Side of Manhattan.
With substantial effort, Stolove secured an appointment for her father at a large drive-in vaccine site on Jones Beach on Jan. 26; her sister found an appointment for her mother there in late February. At work, where many of her clients live alone and don't have family members or friends whom they can rely on for help, she counsels them about vaccines and tries to find appointments on their behalf.
"I have so many advantages in assisting my parents," Stolove said. "Without help from someone like me, how can people find their way through this?"