Although Congress and the courts blocked a Medicaid overhaul, the Trump administration has left its mark on the nation’s largest government-run health program.

This article was first published on Thursday, October 29, 2020 in Kaiser Health News.

By Phil Galewitz

President Donald Trump entered office seeking a massive overhaul of the Medicaid program, which had just experienced the biggest growth spurt in its 50-year history.

His administration supported repealing the Affordable Care Act’s Medicaid expansion, which has added millions of adults to the federal-state health program for lower-income Americans. He also wanted states to require certain enrollees to work. He sought to discontinue the open-ended federal funding that keeps pace with rising Medicaid enrollment and costs.

He has achieved none of these ambitious goals.

Although Congress and the courts blocked a Medicaid overhaul, the Trump administration has left its mark on the nation’s largest government-run health program as it has sought to make states more responsible for assessing its impact and improving the health of enrollees.

One notable achievement: The Trump administration pushed some states to be more aggressive in weeding out ineligible recipients — an initiative that led to a drop in enrollment of children in several states, including Missouri and Tennessee. About half of those enrolled in Medicaid are children.

A recent report from the Georgetown University Center for Children and Families found that the number of uninsured children rose by more than 700,000 to 4.4 million from 2017 through 2019. The increase of uncovered children stands out since uninsured rates typically drop during periods of economic growth, such as the one occurring from 2017 to 2019.

Advocates for the poor say the administration’s efforts contributed to an increase in the number of uninsured children, after years of decline. “The administration has not succeeded on any of its goals in any meaningful way,” said Joan Alker, executive director of the Georgetown center. “But they still have inflicted some damaging changes to the program.”

“The administration has not prioritized the health of children,” said Bruce Lesley, president of the child advocacy group First Focus on Children.

Alker attributes the rise in uninsured children to federal officials’ decision to slash outreach funding for the Obamacare insurance exchanges — through which families eligible for Medicaid are often identified — and the administration’s focus on the “public charge” rule. That provision allows the federal government to more easily deny permanent residency status, popularly known as green cards, or entry visas to applicants who use — or are deemed likely to use — publicly funded programs such as food stamps, housing assistance and Medicaid.

Medicaid officials said the increase is partly due to loss of health coverage by middle-income families who are not eligible for Medicaid. They say those families don’t qualify for government subsidies for the ACA’s marketplace plans and were forced to drop their plans because of high premiums.

But Alker said federal data suggests that families who have incomes over the 400% federal poverty level eligibility limit for subsidies (about $87,000 for a family of three) saw a slower rate of increase in the number of uninsured children as opposed to lower-income kids.

A spokesperson for the federal government’s Centers for Medicare & Medicaid Services said the agency was “committed to ensuring that eligible children are enrolled and retained in coverage” and it spent $48 million in grants for outreach and enrollment effort last year.

The Trump administration opposes the ACA’s expansion of Medicaid, which provided billions in federal dollars to cover nondisabled, low-income adults. Yet seven states adopted the expansion during the past three years, including Republican-controlled Utah, Idaho, Oklahoma, Nebraska and Missouri.

Despite the aim to shrink the program, about 75 million people were enrolled in Medicaid in June 2020 — roughly the same number as in January 2017, when Trump took office.

One reason is that Medicaid enrollment soared this year following the COVID-19 outbreak as unemployment spiked to historic highs and federal stimulus money forbid states to drop anyone unless they moved out of state.

But that is far from the administration’s goal of “ushering in a new day” for Medicaid, as CMS Administrator Seema Verma said when she laid out her bold vision in a 2017 speech.

Verma acknowledged she was stepping into a hornet’s nest of entrenched stakeholders and interest groups.

“I would like to invite everybody here today who have fought the political healthcare battles over the last decade to take a deep breath, exhale and agree to reset as a group,” she said.

They didn’t. The administration’s major Medicaid changes were met with opposition from hospitals, doctors and patient advocacy groups, who feared the efforts would lead to cuts in funding or add obstacles for enrollees seeking care.

Officials spent two years seeking to allow states to require enrollees to work or volunteer as a condition for enrollment. They approved proposals from 10 states, but only Arkansas implemented the new requirement before a federal judge ruled it illegal. Arkansas’ brief experience resulted in more than 18,000 adults losing coverage.

After losing in federal district and appeals courts, the Trump administration has appealed to the Supreme Court, which will decide later this year whether to take the case.

The push for work requirements and other changes have altered the culture of Medicaid so that officials are more intent on keeping people out of the program instead of welcoming more in, said Lesley, of First Focus.

Before the pandemic, he said, the administration allowed states to add hurdles for families to get enrolled and stay enrolled, such as requiring them to more frequently recertify their income eligibility.

Aaron Yelowitz, a professor of economics at the University of Kentucky, said one of the Trump administration’s biggest impacts on Medicaid was prodding states to be more active in making sure they were covering only people who met the states’ eligibility rules. He noted the ACA gave states incentives to enroll newly eligible adults over traditional groups such as children and the disabled because the federal government paid a higher share of the cost.

Seeking Flexibility for States

The administration — as well as Republicans in Congress — favored a fundamental change in how Medicaid is funded. But Congress failed to move the program to a “block grant” approach, which would have given states a set annual amount — rather than the current system that provides funding determined by how many people qualify for the program and health costs. The GOP proposal also would have allowed states more flexibility in running the operations.

Critics predicted a block grant would have cut billions in state funding and led to cuts in services and eligibility.

Once the legislative proposal was dead, the administration sought to enact the strategy via its authority to test changes in payment methods. Only one state applied — Oklahoma — and it dropped its application this year after voters passed a Medicaid expansion ballot initiative.

Verma promised to give states more flexibility in running their programs in other ways, while also holding them more accountable for care to Medicaid enrollees. CMS has approved dozens of Medicaid waivers since 2017, including allowing states to be more innovative in helping enrollees with substance abuse or addiction problems and serious mental illness. It granted more than 30 states waivers to enhance treatment options.

With Medicaid paying for more than half of all births in the United States, Verma also sought to improve oversight of prenatal and early childhood services.

While CMS has started a scorecard to track Medicaid outcomes, the data is missing for several states or outdated on several measures. For example, the low-birthweight measure is missing data from more than 20 states and no data is listed on children born with an addiction.

CMS officials said they are working to provide more updated information on its report card.

Changes implemented by the administration, officials added, have elicited more timely data from states, allowing them to spot problems quicker. For example, in September, CMS determined that many children were delayed from March through May in seeing a doctor and getting important vaccines as the pandemic took hold. CMS pushed states and health providers to remedy the problem but did not offer specific help.

Asked during a recent phone briefing with reporters about Medicaid’s legacy under her stewardship, Verma didn’t mention the expansion, work requirements or efforts to turn Medicaid into a block grant program for states.

“We have aimed to try to ensure the program is sustainable for generations to come and ensure better outcomes for those it serves,” she said.

Ongoing clinical trials are primarily designed to show whether COVID-19 vaccines prevent any symptoms of the disease — which could be as minor as a sore throat or cough.

This article was published on Wednesday, October 28, 2020 in Kaiser Health News.

By Liz Szabo and JoNel Aleccia

The White House and many Americans have pinned their hopes for defeating the COVID-19 pandemic on a vaccine being developed at "warp speed." But some scientific experts warn they're all expecting too much, too soon.

"Everyone thinks COVID-19 will go away with a vaccine," said Dr. William Haseltine, chair and president of Access Health International, a foundation that advocates for affordable care.

Ongoing clinical trials are primarily designed to show whether COVID-19 vaccines prevent any symptoms of the disease — which could be as minor as a sore throat or cough. But the trials, which will study 30,000 to 60,000 volunteers, will be too short in duration and too small in size to prove that the vaccines will prevent what people fear most — being hospitalized or dying — by the time the first vaccine makers file for emergency authorization, expected to occur later this year, Haseltine said.

The United States should hold out for an optimal vaccine, with more proven capabilities, Haseltine argued. Others say the crushing toll of the pandemic — which has killed at least 225,000 Americans — demands that the country accept the best vaccine it can achieve within the next few months, even if significant questions remain after its release.

"There's a tension between getting every piece of information and getting a vaccine [out] in time to save lives," said Dr. William Schaffner, a professor of preventive medicine and health policy at the Vanderbilt University Medical Cancer.

"Would we like to know if the vaccine reduces illness or mortality? Of course," said Dr. Peter Lurie, a former FDA official and the current president of the Center for Science in the Public Interest. "But there is a real time pressure. This is a pandemic. It's explosive."

Researchers debated how rigorously to test COVID-19 vaccines at a Thursday public meeting of the Food and Drug Administration advisory committee on vaccines.

"Simply preventing mild cases is not enough and may not justify the risks associated with vaccination," said Peter Doshi, an associate professor at the University of Maryland School of Pharmacy who detailed his concerns in an editorial in The BMJ.

But vaccine experts say there are good reasons to focus on milder cases of COVID-19.

Vaccines that prevent mild disease typically prevent severe disease, as well, said Dr. Arnold Monto, an epidemiologist at the University of Michigan's School of Public Health and temporary chair of the vaccine committee.

For example, the original studies of the measles vaccine showed only that it prevented measles, not hospitalizations or deaths, said Dr. Kathleen Neuzil, director of the University of Maryland's Center for Vaccine Development and Global Health.

Later studies found that measles vaccines dramatically reduce mortality. According to the World Health Organization, worldwide deaths from measles fell by 73% from 2000 to 2018 because of vaccines.

"There simply does not exist an example in vaccinology of vaccines that are effective against mild disease that are not more effective in severe disease," said Dr. Philip Krause, deputy director of the vaccine office at the FDA's Center for Biologics Evaluation and Research, at Thursday's hearing.

Dr. Paul Offit, who developed the rotavirus vaccine, compared preventing the coronavirus to fighting a fire.

"If you put out a small fire in the kitchen, you don't have to worry about the whole house catching fire," said Offit, a member of the FDA advisory committee on vaccines.

Proving that a vaccine prevents severe illness and death is harder than showing it protects against mild illness because hospitalizations and deaths are much rarer. That's especially true among the type of health-conscious people who volunteer for vaccine trials, who are probably more likely than others to wear masks and socially distance, Schaffner said.

"When we looked at hospitalizations in older adults with influenza, those were two-year trials," Neuzil said. In an ongoing study, in which "we're looking at typhoid vaccines in nearly 30,000 children, it's a two-year trial."

The COVID-19 pandemic has officially infected about 8.7 million Americans. Considering that the true number of Americans infected is estimated to be six to 10 times higher than reported, the mortality rate is about 0.6%, said Dr. Amesh Adalja, a senior scholar at the Johns Hopkins University Center for Health Security.

Scientists agree that the ideal vaccine would provide "sterilizing immunity" — which means preventing not only disease symptoms but any infection with the virus, said Dr. Corey Casper, a vaccinologist with the Fred Hutchinson Cancer Research Center and chief executive officer at the Infectious Disease Research Institute in Seattle.

For example, two doses of measles vaccines prevent 97% of people from even becoming infected with that virus.

Few expect COVID-19 vaccines to be that effective. "We're trying to lower that bar and determine how much lower is acceptable," Casper said.

Preventing mild disease could curb disease and prevent illness, Casper said.

"We're probably not going to have the perfect vaccine," he said. "But I do think we're likely to have vaccines that, if we can show they're safe, can put an inflection point on this pandemic. … I think it's still important to have a vaccine that has some effect even on mild illness."

Flu shots aren't super effective — with effectiveness each year ranging from 19% to 70% — but they're still extremely useful, Casper said.

During the 2018-19 U.S flu season, vaccination prevented an estimated 4.4 million influenza illnesses, 2.3 million medical visits, 58,000 hospitalizations and 3,500 influenza-associated deaths, according to the Centers for Disease Control and Prevention.

A trial of 30,000 to 60,000 people is already fairly large by historical standards. Dramatically expanding the size beyond that isn't practical in a compressed time frame, Krause said.

"If the endpoint of the trial is severe disease, the trials may need to be almost 10 times as big," he said at the meeting. "And those trials would be infeasible and we would never get a vaccine."

On the other hand, "if there is a vaccine that appears to have high efficacy or appears to be capable of saving lives, one doesn't want to stop that vaccine if there is a significant chance that it will save lives," Krause said.

Although the coronavirus vaccine trials are measuring severe disease or death, these are "secondary endpoints," meaning the current size of the study isn't large enough to produce a statistically significant answer, Neuzil said.

Whether vaccines reduce severe disease and death will become clear in later studies, after vaccines are distributed, Neuzil said.

Offit said the debate revolves around one question: "How much uncertainty are we willing to live with, knowing that we're facing a virus that has brought us to our knees?"

Liz Szabo: lszabo@kff.org, @LizSzabo

JoNel Aleccia: jaleccia@kff.org, @JoNel_Aleccia

Medical professionals and health experts predict that when the pandemic is over, telehealth will still play a much larger role than before.

This article was published on Tuesday, October 27, 2020 in Kaiser Health News.

By Bernard J. Wolfson

As COVID-19 took hold in March, U.S. doctors limited in-person appointments — and many patients avoided them — for fear of infection. The result was a huge increase in the volume of remote medical and behavioral health visits.

Doctors, hospitals and mental health providers across the country reported a 50- to 175-fold rise in the number of virtual visits, according to a report released in May by the consulting firm McKinsey & Co.

The COVID-fueled surge has tapered off as patients venture back to doctors' offices. But medical professionals and health experts predict that when the pandemic is over, telehealth will still play a much larger role than before.

Studies show patient satisfaction with telehealth is high. And for physicians who previously were skeptical of remote care, necessity has been the mother of invention.

"There are still a few doubting Thomases, but now that we've run our practices this way for three months, people have learned that it's pretty useful," says Dr. Joseph Kvedar, president of the American Telemedicine Association and a practicing dermatologist who teaches at Harvard Medical School in Boston.

For patients, the advantages of telemedicine are clear: You typically can get an appointment sooner, in the safety of your own home or workplace, saving time and money on gas and parking — in some cases, even avoiding a loss in wages for missing work.

James Wolfrom, a 69-year-old retired postal executive in San Francisco, has had mostly virtual healthcare appointments since the pandemic started. He particularly appreciates the video visits.

"It's just like I'm in the room with the doctor, with all of the benefits and none of the disadvantages of having to haul my body over to the facility," says Wolfrom, who has Type 2 diabetes. "Even after the pandemic, I'm going to prefer doing the video conferencing over having to go there."

Telemedicine also provides care for people in rural areas who live far from medical facilities.

The growth of virtual care has been facilitated by Medicare rule changes for the COVID-19 emergency, including one that reimburses doctors for telemedicine at the same rate as in-person care for an expanded list of services. State regulators and commercial health plans also loosened their telehealth policies.

In California, the Department of Managed Healthcare, which regulates health plans covering the vast majority of the state's insured residents, requires commercial plans and most Medi-Cal managed care plans during the pandemic to pay providers for telehealth at parity with regular appointments and limit cost sharing by patients to no more than what they would pay for in-person visits. Starting Jan. 1, a state law — AB-744 — will make that permanent for commercial plans.

Five other states — Delaware, Georgia, Hawaii, Minnesota and New Mexico — have pay-parity laws already in effect, according to Mei Wa Kwong, executive director of the Center for Connected Health Policy. Washington state has one that also will begin Jan. 1.

If you are planning a telehealth appointment, be sure to ask your health plan if it is covered and how much the copay or coinsurance will be. The appointment may be through your in-network provider or a telehealth company your insurer contracts with, such as Teladoc, Doctor On Demand or MD Live.

You can also contact one of those companies directly for a medical consultation if you don't have insurance, and pay between $75 and $82 for a regular doctor visit.

If you are one of the 13 million Californians enrolled in Medi-Cal, the state's Medicaid program, you can get telehealth services at little to no cost.

Large medical offices and health systems usually have their own telemedicine platforms. In other cases, your provider may use a publicly available platform such as FaceTime, Skype or Zoom. Either way, you will need access to a laptop, tablet or smartphone — though, for a phone conversation, a landline or simple cellphone will suffice.

Smartphones with good cameras can be particularly useful in telemedicine because high-resolution photos can help doctors see certain medical problems more clearly. For example, a photo from a good smartphone camera usually provides enough detail for a dermatologist to determine whether a mole requires further attention, Kvedar said.

Relatively inexpensive apps and at-home tools enable you to measure your own blood pressure, pulse rate, oxygen saturation level and blood sugar. It's a good idea to monitor your vitals and have the numbers ready before you start a virtual visit.

Be aware that a remote visit is not right for every situation. In the case of serious injury, severe chest pain or a drug overdose, for example, you should call 911 or get to the ER as quickly as possible.

Virtual visits also are not recommended in other cases for which the doctor needs to lay hands on you.

Wolfrom has had only a few in-person health visits this year, one of them with a podiatrist who checks his feet every six to 12 months for diabetes-related neuropathy. "That can only be done when you are in the room and the podiatrist is touching and feeling your feet," Wolfrom says.

Face-to-face visits are generally better for young children. Kids often require vaccinations, and it's easier for doctors to monitor their growth and development in person, says Dr. Dan Vostrejs, a pediatrician at Santa Clara Valley Medical Center in San Jose.

In general, telemedicine is effective in cases that would typically send you to an urgent care clinic, such as minor injuries or flu-like symptoms, including fever, cough and sore throat.

It is also increasingly used for post-surgical follow-ups. Telemedicine can be a godsend for geriatric or disabled patients with reduced mobility. And it's a no-brainer for mental healthcare, which is mostly talking anyway.

Among the top telehealth adopters are medical specialists who treat chronic illnesses such as diabetes, hypertension, cardiovascular disease and asthma, says Dr. Peter Alperin, a San Francisco internist and vice president of product at Doximity, a kind of LinkedIn for medical professionals.

Providers can monitor patients' vitals remotely and discuss lab results, diet, medications and any symptoms in a video chat or a phone conversation. "If you happen to see something that's awry, you can bring them into your office," Alperin says, adding it's "a better form of triage."

But telemedicine has some serious disadvantages. For one thing, the less formal setting can allow some routine medical practices to slip through the cracks.

In the second quarter of this year, blood pressure was recorded in 70% of doctor office visits compared with about 10% of telemedicine visits, according to a study published early this month.

Elsa Pearson, a resident of Dedham, Massachusetts, had a medical appointment scheduled in March, which was switched to a telephone call because of the pandemic-induced lockdown.

"It was honestly the most efficient appointment I've had in my life," says Pearson, 30. But, "I must admit, without the push of having the labs right there when you leave the appointment, I've yet to get them done."

Perhaps the biggest pitfall in telehealth is the loss of a more intimate and valuable doctor-patient relationship.

In a recent essay, Dr. Paul Hyman, a Maine physician, reflected on the times when an unexpected discovery during an in-person examination had possibly saved a patient's life: "A discovery of an irregular mole, a soft tissue mass, or a new murmur — I do not forget these cases, and I do not think the patients do either."

This KHN story first published on California Healthline, a service of the California Healthcare Foundation.

Bernard J. Wolfson: bwolfson@kff.org, @bjwolfson

Verily had two sites in Alameda County, and one was shuttered by May. The second, located at an Oakland church, closed in August and is set to reopen using a different testing vendor.

This article was published on Monday, October 26, 2020 in Kaiser Health News.

By Jenny Gold and Rachana Pradhan

OAKLAND, Calif. — Amid fanfare in March, California officials celebrated the launch of a multimillion-dollar contract with Verily — Google’s health-focused sister company — that they said would vastly expand COVID testing among the state’s impoverished and underserved communities.

But seven months later, San Francisco and Alameda counties — two of the state’s most populous — have severed ties with the company’s testing sites amid concerns about patients’ data privacy and complaints that funding intended to boost testing in low-income Black and Latino neighborhoods instead was benefiting higher-income residents in other communities.

San Francisco and Alameda are among at least 28 counties, including Los Angeles, where California has paid Verily to boost testing capacity through contracts collectively worth $55 million, according to a spokesperson for the California Governor’s Office of Emergency Services. About half of them have received COVID tests through six mobile units that travel among rural areas.

Gov. Gavin Newsom has heralded the investment as a game changer in addressing persistent inequities in access to COVID testing across the state that tend to fall along lines of ethnicity and income. The goal, he said in April, touting six new Verily testing sites, was to “make sure we’re truly testing California broadly defined, not just parts of California and those that somehow have the privilege of getting ahead of the line.”

Yet the roadblocks for getting underrepresented populations to use the program soon became apparent to Alameda County officials. In a June letter to California Secretary of Health Mark Ghaly, Oakland Mayor Libby Schaaf and other members of the county’s COVID-19 Racial Disparities Task Force raised numerous concerns about the Verily protocols.

Among their complaints: People signing up for a test through Verily had to do so online, using an existing or newly created Gmail account; the sign-ups were offered only in English or Spanish; and participants were asked to provide sensitive personal information, including their home address and whether they were managing chronic health conditions such as diabetes, obesity or congestive heart failure, which could expose their data to third-party use.

“It is critical in this crisis that we continue to build trust between government and healthcare providers and vulnerable communities,” the task force members wrote.

Verily had two sites in Alameda County, and one was shuttered by May. The second, located at an Oakland church, closed in August and is set to reopen using a different testing vendor. Alameda County testing director Dr. Jocelyn Freeman Garrick said that while the Verily sites helped the county reach testing goals in terms of raw numbers, they were phased out because of long wait times of a week or more for results, and because the tests were not reaching the residents in greatest need.

Verily does not manufacture the COVID tests used at its California sites. It contracts with major corporations such as Quest Diagnostics and Thermo Fisher Scientific to provide the test kits and perform the lab work. What Verily provides is a digital platform where people are screened for symptoms, schedule testing appointments at participating sites and check back for test results.

Dr. Noha Aboelata is CEO of Roots Community Health Center, an East Oakland clinic that serves mostly African Americans and is one of the original Verily sites in Oakland. Her experience with Verily is best described as a tale of two lines.

In May, Aboelata worked with Verily to establish a walk-up site at her clinic, rather than the drive-thru model the company typically uses. There would be two lines: one for people who scheduled their appointments through Verily’s online portal; and a second for people who had not preregistered with Verily. Roots would staff both lines, and Verily would supply test kits and personal protective equipment including masks, which were “like gold” at the time, Aboelata said.

Problems emerged almost immediately, she said. People were suspicious of the requirement that they sign up with a Gmail account, and the request for personal information, such as health status and risk factors. “You don’t necessarily want to share that with Google,” Aboelata said.

Then there was the language in the privacy policy that allows for sharing data with third parties. “That always is going to raise suspicion and concern in our community,” she said.

The people who ended up in the Verily-registered line, she said, tended to be white and to come from wealthier ZIP codes outside East Oakland. And because Verily never changed the website language describing Roots as a drive-thru site, many were angry at having to walk up.

“We had people coming from all over the Bay Area who were frustrated that they had to park in Oakland, where they had probably never been and didn’t seem to want to be,” she said. “They were creating quite a scene, and some were saying, ‘I want to talk to the manager.’” She had to ask a few people to leave. “One of them was saying, ‘This is so Oakland, and I hope you all get the virus.’ It was pretty awful.”

The Roots line for clients who did not register through Verily, on the other hand, was made up mostly of people of color from the community who long had come to the clinic for medical care, she said.

When Aboelata looked at the data, the disparities were obvious: 12.9% of people tested in the non-Verily line were positive for COVID-19, while just 1.5% of people tested in the Verily-registered line were positive. For Aboelata, it was clear that the two lines were testing two entirely different populations.

After just six days of testing, Aboelata asked Verily to leave.

“From where we sit, this is an old story,” she said. “Corporations that are not really invested in the community come helicoptering in, bearing gifts, but what they’re taking away is much more valuable.” That thing of value, Aboelata believes, is the data Verily requests from everyone who signs up for a test.

In San Francisco, Verily mobile testing clinics have also been sidelined. County officials declined to provide an explanation. However, multiple people with knowledge of the testing efforts said the Verily registration process proved chaotic for homeless people and others in the Tenderloin district, one of the city’s poorest neighborhoods.

Kenneth Kim, clinical director of Glide, an outreach center that helped run the Tenderloin site, said many homeless residents coming in for testing had Gmail accounts, as Verily required, but could not remember their passwords. When staffers at the testing site tried to help them retrieve their passwords, they found that Google’s two-factor authentication process required users to have the same phone number as when they signed up, which few of the homeless participants did.

Dr. Jonathan Fuchs, who leads San Francisco County’s testing strategy at the Department of Public Health, confirmed that the partnership with Verily was “currently on hold.” He declined to provide further details.

In response to questions, Verily spokesperson Kathleen Parkes said the program requires users to register with Gmail accounts because Google’s authentication procedures safeguard sensitive data and protect “against unknown individuals sending or receiving information with serious consequences for health or well-being.” Conversations with San Francisco and Alameda remain “active,” Parkes said. The company did not respond to specific questions about the testing disparities cited by community leaders.

Verily’s role in COVID-19 testing has been shadowed by controversy since President Donald Trump told reporters at a Rose Garden news conference in March that “Google” was developing a screening website and testing tool. “Google has 1,700 engineers working on this right now,” he said. “They’ve made tremendous progress.”

At the time, COVID tests were in short supply and Trump was under pressure to increase capacity as infections ballooned in California, New York and other states. But Google was not building such a website. Instead, Verily, another Alphabet Inc. subsidiary focused on life sciences, was in the early stages of developing a website to help triage people in need of COVID testing, Google clarified in a tweet. It planned to unveil a pilot program in two Bay Area counties.

Days later, Newsom announced a California partnership with Verily that so far has paid the company $55 million to establish both mobile and brick-and-mortar testing sites. In addition, Verily has partnered with Rite Aid to manage testing at approximately 300 sites in multiple states under a $122.6 million federal contract between the pharmacy chain and the U.S. Department of Health and Human Services. California’s Verily contracts are in place through Nov. 30; the HHS contract is set to expire in January.

Participants in the Verily initiative sign an authorization form that says their information can be shared with multiple third parties involved in the testing program, including unnamed contractors and state and federal health authorities.

“While the form tells you that Verily may share data with ‘entities that assist with the testing program,’ it doesn’t say who those entities are. If one of those unnamed and unknown entities violates your privacy by misusing your data, you have no way to know and no way to hold them accountable,” said Lee Tien, senior staff attorney for the Electronic Frontier Foundation, a nonprofit that advocates for digital privacy.

The policy states Verily will not use the data collected for its own research or meld it with other Google products without the user’s permission. But it notes participants may be invited to share their data for such research, and the testing portal prominently features links inviting participants to sign up for other Verily research.

In California, as of Oct. 8, the Verily sites had processed an average of 1,583 patient samples per day over the prior seven days, according to the California Department of Public Health. Verily, the state health department and Alameda County all declined requests to provide race and ethnicity data by testing site.

Dr. Kim Rhoads, a UCSF professor and former colorectal surgeon who leads a COVID testing project for Black communities, said Aboelata’s experience with Verily is emblematic of widespread racial disparities in the testing and treatment of COVID-19. “We can’t keep talking about the consequences being unintended,” Rhoads said. “We are six months into this pandemic and anyone who is surprised by the repetitive findings of inequity in testing, the spread of virus and COVID-19 mortality just isn’t paying attention.”

In an interview, Ghaly, California’s health secretary, said he believed the state’s partnerships with Verily and other companies continue to be a national model for addressing problems with testing disparities, including setting up venues for minority and rural populations. For example, in counties in northern parts of the state, sometimes the only regular testing available was through mobile testing set up under the program, he said.

“I think there’s lots of success and lots of lessons learned and we continue to apply them,” Ghaly said. “Until the entire effort is completed, I always look at where we are as part success and part opportunity to keep learning.”

In a September response to the Oakland COVID-19 disparities task force, Ghaly outlined several actions the state had taken or would take in response to the concerns, including having Verily update its platform to include additional languages and work with testing vendors on alternative methods for data collection to address privacy concerns.

“Some of the things we learned specifically in our experience in Alameda and other parts of the Bay Area is language matters,” Ghaly told KHN.

After working with the homeless for 25 years, Dr. Margot Kushel, director of the UCSF Benioff Homelessness and Housing Initiative, said she wasn’t surprised to learn some community leaders ran into problems with Verily.

“It turns out that in public health, the highest-tech solution is usually not the right one,” she said. To bring COVID cases down, she explained, requires a “laser focus” on the highest-risk communities. And people in those communities often don’t want to turn over the protected information Verily asks for, whether because of fears about their immigration status or a history of mistrust of the medical establishment and policing.

“You can imagine a million and a half reasons why people would distrust it,” Kushel said. “The very structure of this is set up to fail. And by failing the communities who need it most, we fail everybody.”

California Healthline correspondent Angela Hart contributed to this report.