Labor Department Issues Emergency Rules to Protect Healthcare Workers From COVID

KFF Health News, June 11, 2021

Until now, employers were required to report a hospitalization only if it came within 24 hours of a workplace exposure.

This article was published on Friday, June 11, 2021 in Kaiser Health News.

By Christina Jewett

Labor Department officials on Thursday announced a temporary emergency standard to protect healthcare workers, saying they face "grave danger" in the workplace from the ongoing coronavirus pandemic.

The new standard would require employers to remove workers who have COVID-19 from the workplace, notify workers of COVID exposure at work and strengthen requirements for employers to report worker deaths or hospitalizations to the Occupational Safety and Health Administration.

"These are the workers who continue to go into work day in and day out to take care of us, to save our lives," said Jim Frederick, acting assistant secretary of Labor for occupational safety and health. "And we must make sure we do everything in our power to return the favor to protect them."

The new rules are set to take effect immediately after publication in the Federal Register and are expected to affect about 10.3 million healthcare workers nationwide.

The government's statement of reasons for the new rules cites the work of KHN and The Guardian in tallying more than 3,600 healthcare worker COVID deaths through April 8. Journalists documented far more deaths than the limited count by the Centers for Disease Control and Prevention, which through May tallied 1,611 deaths on case-reporting forms that were often incomplete.

The Lost on the Frontline project documented early calls for better respiratory protection for healthcare workers than loose-fitting face masks, noted serious complaints to OSHA from hospital workers that went unaddressed and revealed repeated employer failures to report dozens of worker deaths. It also found that healthcare employers were often remiss in notifying workers about exposure to the coronavirus on the job.

The new standard would address some of those problems.

The rules require workers to wear N95 or elastomeric respirators when in contact with people with either suspected or confirmed COVID. They strengthen employer record-keeping requirements, saying employers must document all worker COVID cases (regardless of whether they were deemed work-related) and report work-related deaths even if they occur more than 30 days after exposure.

Until now, employers were required to report a hospitalization only if it came within 24 hours of a workplace exposure. Now all work-related COVID hospitalizations must be reported. The rules also mandate notification about exposure to a sick colleague, patient or customer if the worker was not wearing a respirator.

There is a lot to like about the new rule ― except for the timing, according to Barbara Rosen, vice president of the Health Professionals and Allied Employees union in New Jersey.

"It's a little late," she said. "If we had had this in place at the beginning, it would have saved a lot of lives and a lot of suffering that has gone on with healthcare workers and probably patients in hospitals because of the spread."

She said she was pleased with the requirement that workers be paid when they isolate with COVID and that employers formulate a detailed COVID plan with the input of non-managers.

The day after he took office, President Joe Biden issued an executive order calling on OSHA to "take swift action to reduce the risk that workers may contract COVID-19 in the workplace." The rule has been criticized for coming late — about which Labor Department officials said on a press call that such standards typically take years, not months, to formulate. It has also been derided for failing to enact requirements on employers outside of healthcare.

"OSHA's failure to issue a COVID-specific standard in other high-risk industries, like meat and poultry processing, corrections, homeless shelters and retail establishments is disappointing," according to a statement from David Michaels, a former OSHA administrator and professor with the George Washington University School of Public Health. "If exposure is not controlled in these workplaces, they will continue to be important drivers of infections."Bottom of Form

The new rule also cites 67,000 worker complaints during the pandemic, with "more complaints about healthcare settings than any other industry." The rule would protect workers from retaliation for staying home when sick with COVID, alerting their employer about a COVID hazard or exercising their rights under the emergency rule.

Through March 7, about half of healthcare workers said they had received at least their first dose of a COVID vaccine, according to a KFF-Washington Post poll. About one-third of those polled said they were unsure if they would get a vaccine. The issue has been controversial, especially in Houston, where workers at one hospital staged a protest over their employer's vaccine mandate.

The new rules exempt some office-based healthcare workplaces where all staff members are vaccinated and measures are taken to screen people with potential illness. The rule summary estimates the measures will prevent 776 deaths and 295,000 infections.

The new rule also says it will "enable OSHA to issue more meaningful penalties for willful or egregious violations, thus facilitating better enforcement and more effective deterrence against employers who intentionally disregard … employee safety."

Kristin Carbone said the measure came too late for her mother, Barbara Birchenough, 65, a New Jersey hospital nurse who'd asked family members to gather gardening gloves and trash bags to serve as makeshift personal protective equipment before she fell ill and later died on April 15, 2020. Still, she said, it's a necessary step.

"If there is a silver lining," she said, "I'm glad that out of this tragedy come positives for the people that are left behind."

Christina Jewett: ChristinaJ@kff.org, @by_cjewett

Biden Kept His Promise to Increase COVID-Testing Capacity, Even as Demand for Testing Drops

KFF Health News, June 11, 2021

Promise: "Double the number of drive-through testing sites, invest in next-generation testing, including at home tests and instant tests, so we can scale up our testing capacity by orders of magnitude."

This article was published on Friday, June 11, 2021 in Kaiser Health News.

By Victoria Knight

Before vaccinations were widely available, COVID-19 tests were considered one of the few tools to help control the spread of the coronavirus.

That's why then-candidate Joe Biden promised during the 2020 presidential campaign to boost the United States' testing capacity as one way he would "beat COVID-19."

Specifically, Biden's campaign website promised that, if elected, he would "double the number of drive-through testing sites" and "invest in next-generation testing, including at-home tests and instant tests, so we can scale up our testing capacity by orders of magnitude."

KHN has teamed up with our partners at PolitiFact to analyze Biden's promises during the 2020 presidential campaign. Now that Biden has been president almost five months, we checked how he has done on this one. Experts say testing capacity has improved. At the same time, testing demand has decreased and part of Biden's promise — doubling the number of drive-thru testing sites — is harder to pin down.

In February, about a month after Biden took office, his administration announced at a news briefing that it would invest more than $1.6 billion in COVID testing. These funds would, among other things, expand testing in schools and other congregate settings, increase domestic manufacturing of testing supplies, and help track COVID variants via genetic sequencing.

Then, Biden's American Rescue Plan, which successfully passed through both chambers of Congress in March, also allocated funds specifically to expand testing.

On March 17, the Department of Health and Human Services announced that $10 billion from that legislation would be devoted to screening and testing so schools could reopen, and $2.25 billion to scaling up testing in underserved populations as well as providing new guidance. An additional $4.8 billion was allotted in May to reimburse healthcare providers for testing uninsured people for the coronavirus.

Dr. Marcus Plescia, chief medical officer of the Association of State and Territorial Health Officials, the organization representing state public health agencies, said states have begun to receive their American Rescue Plan funds and are starting to plan how testing will be implemented to help schools conduct classes in person in the fall.

But whether Biden was successful in doubling the number of drive-thru testing sites is unclear. KHN and PolitiFact asked various testing experts for their take, and they generally said they weren't aware of any data that showed the number of sites had doubled. Some hypothesized, though, that this may have been because many public health resources were shifted away from testing sites to staff and to set up vaccination sites once COVID vaccines became available to the public.

"I think states did shift their efforts to vaccination, because that was the move in the spring," said Plescia. But as more people were vaccinated, demand dropped, and "if we had those drive-thru testing sites we ended up closing them," he added. "It was a promise we ended up not needing to keep."

Indeed, there have been reports of shuttered testing sites across the U.S. In Florida all 27 state-run testing sites closed at the end of May. Oklahoma also recently closed a mass testing site once demand fell to fewer than 50 tests a day and, in late May, New Jersey closed the state's first outdoor testing site.Bottom of Form

The Johns Hopkins University Testing Tracker shows that testing demand in the U.S. has significantly dropped. In January, about 2 million tests were conducted in a day. In May, that number dropped to about 850,000. This reduction has occurred at the same time the number of Americans getting vaccinated is rising and COVID cases and deaths are dropping.

The Centers for Disease Control and Prevention also recently recommended that vaccinated people who have been exposed to someone with COVID no longer need to be tested if asymptomatic, and that vaccinated people can be excluded from workplace testing in most instances.

Still, Plescia thinks that if future outbreaks occur in certain areas and more tests are required, states would be able to scale up to meet the need. Especially because of the increased availability of at-home tests — another Biden focus.

So far, the administration has contracted with several private companies to ensure the production and distribution of both rapid and at-home COVID tests.

Ellume, an Australian diagnostics company, was the first to receive an emergency use authorization from the Food and Drug Administration for an at-home test. In February, the Department of Defense announced it had awarded Ellume almost $232 million to build a U.S. factory and increase home-test production. The contract also includes the allocation of 8.5 million home tests to the federal government, which must be provided by the end of 2021.

Abbott, another diagnostics company, received significant funds from the federal government for tests during both the Biden and Trump administrations. In March, HHS announced that Abbott had received a contract to deliver 50 million of its rapid point-of-care tests to long-term care facilities.

Currently, five over-the-counter at-home tests have been authorized for emergency use by the FDA. In addition to the Ellume and Abbott tests, which provide results at home in 15 minutes, a Labcorp test is also available over the counter, but its results take one or two days to return.

The increase in supply and decrease in demand could mean some testing efforts originally envisioned by the Biden administration might not be rolled out and the U.S. might never get to "orders-of-magnitude" increases in testing, Josh Michaud, associate director of global health policy at KFF, wrote in an email.

Overall, though, despite the number of drive-thru or mass-testing sites closed down, there is now a greater availability of COVID tests. The Biden administration has also provided significant funding toward testing, even if some of it has been redirected.

"In general, I think testing is much better," Jeffrey Schlegelmilch, director of the Columbia University National Center for Disaster Preparedness, wrote in an email. "There are easier-to-access options, and the wait times seem to be much faster for results. … There are also more resources available to state and local health departments to perform testing. So I would qualify this as a promise kept."

So would we. We rate this a Promise Kept.

Source List

The Associated Press, "OU Health Closing Public Coronavirus Testing as Demand Drops," May 27, 2021

Bradenton Herald, "State-Run COVID Testing Sites Closing by May 28. Manatee, Sarasota Sites to Close Saturday," May 12, 2021

Centers for Disease Control and Prevention, "Interim Public Health Recommendations for Fully Vaccinated People," May 28, 2021

CNBC, "Biden Administration to Invest Over $1.6 Billion to Expand COVID Testing, Sequencing," Feb. 17, 2021

CVS Health, "Over-the-Counter COVID-19 Testing Now Available at CVS Pharmacy," April 19, 2021

Department of Defense, "DOD Awards $231.8 Million Contract to Ellume USA LLC to Increase Domestic Production Capacity and Deliver COVID-19 Home Tests," Feb. 1, 2021

Department of Health and Human Services, "Biden Administration Announces Actions to Expand COVID-19 Testing," Feb. 17, 2021

Department of Health and Human Services, "Biden Administration to Invest More Than $12 Billion to Expand COVID-19 Testing," March 17, 2021

Department of Health and Human Services, "HHS to Dedicate $4.8 Billion From American Rescue Plan to COVID-19 Testing for the Uninsured," May 25, 2021

Email exchange with Aly Morici, director of public affairs at Abbott, June 7, 2021

Email interview with Jeffrey Schlegelmilch, director of the Columbia University National Center for Disaster Preparedness, June 7, 2021

Email interview with Josh Michaud, associate director for global health policy at KFF, June 4, 2021

FierceBiotech.com, "CVS, Walgreens Begin Rolling Out Over-the-Counter COVID Tests From Abbott, Ellume and More," April 19, 2021

Food and Drug Administration, Coronavirus (COVID-19) Update: June 8, 2021, June 8, 2021

Healthline, "COVID-19 Rapid Tests Now Available at Pharmacies: What to Know," April 22, 2021

Johns Hopkins University Coronavirus Tracker, Daily State-by-State Testing Trends, accessed June 8, 2021

KHN, "Backed by Millions in Public and Private Cash, Rapid COVID Tests Are Coming to Stores Near You," April 1, 2021

Patch.com, "COVID-19 Testing Site Closes in Hoboken, After 60,000th Test," May 21, 2021

Phone interview with Gigi Gronvall, a senior scholar at the Johns Hopkins Center for Health Security at the Bloomberg School of Public Health, June 8, 2021

Phone interview with Dr. Marcus Plescia, chief medical officer of the Association for State and Territorial Health Officials, June 8, 2021

Phone interview with Dr. Leana Wen, visiting professor of health policy and management at the George Washington University, June 8, 2021

Politico, "Biden Admin Reroutes Billions in Emergency Stockpile, COVID Funds to Border Crunch," April 15, 2021

The Wayback Machine, JoeBiden.com/COVID19/, accessed June 9, 2021

The White House, Press Briefing by White House COVID-19 Response Team and Public Health Officials, Feb. 17, 2021

Victoria Knight: vknight@kff.org, @victoriaregisk

Doctor on Call? Lawmakers Debate How Much to Pay for Phone Appointments

KFF Health News, June 11, 2021

Medi-Cal paid for a whopping 2.4 million phone appointments from March 1, 2020, to April 30, 2021.

This article was published on Friday, June 11, 2021 in Kaiser Health News.

By Rachel Bluth

It took COVID-19 to give millions of Americans the option of telling their doctor about their aches and pains by phone.

But now that more doctors and patients are returning to in-person appointments, policymakers across the country are divided over how much taxpayer money to keep spending on phone appointments. Although they were a lifeline for Medicaid and Medicare patients who don't have the technology for video visits, critics say they don't provide the same level of patient care and aren't worth the same price.

In California, the Democratic-controlled legislature wants the state's Medicaid program for low-income people — called Medi-Cal — to keep paying for phone calls at the same rate as for video and in-person visits, a policy that began during the pandemic. But Democratic Gov. Gavin Newsom's budget plan directs Medi-Cal to reduce the rate.

Medi-Cal paid for a whopping 2.4 million phone appointments from March 1, 2020, to April 30, 2021, according to the state Department of Healthcare Services.

"Prior to the pandemic, audio-only visits weren't a thing," said Chris Perrone, director of the California Healthcare Foundation's Improving Access team. "No one considered them telehealth." (California Healthline is an editorially independent publication of the foundation.)

The federal Medicare program — which covers older Americans and people with disabilities — and most state Medicaid programs rarely paid for phone visits before the pandemic. But after doctors shuttered their offices last year and patients stayed home, Medicare and nearly every state Medicaid program began paying for phone visits when it became clear that many patients didn't have access to video. More private insurers began counting phone calls as telemedicine visits, too.

The use of audio and video appointments — generally known as telehealth — has exploded during the pandemic. In California, there were about 10,500 telehealth visits a week per 100,000 Medi-Cal patients in 2020, compared with about 300 in 2019, according to the state Department of Healthcare Services.

Medicare saw a similar explosion. Before the pandemic, about 17,000 enrollees used telemedicine each week. That shot up to 1.1 million weekly during the pandemic, according to a Medicare spokesperson.

While most state Medicaid programs began paying for phone visits during the pandemic, they are weighing how to proceed as it wanes. New Hampshire passed a law in March 2020 requiring Medicaid and private plans to pay for phone visits at the same rate as video and in-person visits. This March, Vermont extended emergency rules to pay for phone visits at the same rate as other types of appointments through 2022, and a state working group recommended keeping them permanently. Connecticut, Delaware, New York, Colorado and other states passed laws that define phone visits as telehealth, and all are continuing to pay for them to varying degrees.

Congress held hearings in April to determine whether Medicare should keep paying for phone visits, which it started doing in March 2020 but is set to stop after the federally declared public health emergency ends. A nonpartisan legislative agency has recommended extending the payments for a year or two after the emergency.

Because audio appointments are new, there's little evidence on quality. The California Health Benefits Review Program analyzed studies on the effectiveness of telehealth and found that, generally, telephone visits were "at least as effective as in-person" ones. The few studies that directly compare video and audio visits looked at behavioral healthcare and determined that outcomes were about the same.

Phone visits were important to Taryn Keane, 63, who lost her job as a massage therapist in Venice, California. Keane can't afford internet service at home and didn't have a laptop until the Venice Family Clinic gave her an old one and a Wi-Fi hot spot so she could participate in patient forums.

Still, Keane doesn't like video calls. She has dental problems that make her uncomfortable showing her face on video and a learning disability that makes it hard to focus if there are too many visual distractions. It was easier for her to talk through her mental health issues, and get consultations before and after wrist surgery, over the phone.

"I'm not good on the computer," Keane said. "It's just another uncomfortable barrier for me."

California lawmakers are debating a bill, AB 32, that would require Medi-Cal to keep reimbursing phone, video and in-person visits at the same rate in most settings. The measure, passed by the state Assembly, is now being debated in the Senate and as part of budget negotiations.

An analysis of the bill from the California Health Benefits Review Program found evidence that patients of color and those who are older or rural were more likely to use phone visits than video visits during the pandemic.

"It's obvious that video [appointments] will not be going to all rural residents and seniors anytime soon," said state Assembly member Cecilia Aguiar-Curry (D-Winters), author of the measure. "My No. 1 goal is to have access for all."

Doctors at safety-net clinics that serve Medi-Cal enrollees and uninsured people report that phone visits have been instrumental in keeping patients healthy during the pandemic. They have proved effective with patients with behavioral health issues like substance use disorders, and those with chronic diseases like diabetes, which require monthly check-ins.

Dr. Grace Floutsis, CEO of White Memorial Community Health Center in Los Angeles, used video and phone appointments for the first time during the pandemic. Like all federally qualified health centers, White Memorial generally wasn't allowed to use telehealth until then.

"What surprised us the most was how many more people had access to care because that was provided," Floutsis said. "I'm not sure that changes that much after the pandemic."

Patients have stopped skipping appointments, she said. The no-show rate for pediatrics (now in person) is higher than for adult primary care (still virtual). The no-show rate for behavioral health, once high, has dwindled to nearly zero.

California's Department of Healthcare Services argues that phone appointments aren't as good as in-person or even video visits and wants to pay for some phone visits at 65% of in-person or video rates, beginning July 1 or when the federal public health emergency ends.

"There are inherent limitations on the types of services and quality provided," department spokesperson Tony Cava wrote in an email. "They are not typically viewed as equivalent to in-person visits, do not require the same level of resources to manage, and special equipment or broadband internet connections aren't required."

Despite multiple requests, the department did not provide data on how much it paid for phone appointments during the pandemic.

Under the department's proposal, it would no longer pay for phone appointments at community health centers because the health centers receive a flat rate for every visit by a Medicaid patient. The department left the door open to work with health centers and the federal government to pay some amount for audio visits in the future.

The average community clinic appointment in California is reimbursed at $215, but some can be several hundred dollars.

"While I think it's a really valuable service, I don't think it's a really valuable service at that cost," said Assembly member Jim Wood (D-Santa Rosa), who chairs the Assembly Health Committee.

His committee discussed cost in April when it considered AB 32, the bill to keep rates for phone visits equal to the rates for other visits, and amended it to stop reimbursing audio visits at community clinics altogether after five years.

West County Health Centers in Sonoma County is already losing money on phone appointments for Medicare patients, and will take an even bigger hit if Medi-Cal cuts rates, said CEO Jason Cunningham.

But ending phone appointments completely isn't an option, he said. Phone calls allow patients to conference in family members, eliminate travel time for patients in remote parts of the county, and enabled clinics to keep operating when their buildings were closed for wildfires last summer, he said.

"How can I ask someone to drive an hour to see me, wait in the waiting room for 20 minutes and drive an hour back home when their neighbor with a laptop can see me virtually?" he asked.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Rachel Bluth: rbluth@kff.org, @RachelHBluth

Change to Gilead Assistance Program Threatens PrEP Access, HIV Advocates Say

KFF Health News, June 10, 2021

The Advancing Access program offers free medicine to the uninsured.

This article was published on Thursday, June 10, 2021 in Kaiser HealthcareNews.

By Carmen Heredia Rodriguez

Dr. John Carlo is concerned that patients at Prism Health North Texas who rely on the healthcare safety net will soon be struggling even more to stay on PrEP, a medication that prevents HIV transmission.

Carlo, chief executive officer of the clinic, which runs three locations in Dallas, offers free PrEP to roughly 250 patients, he said, thanks to an assistance program run by Gilead Sciences. The drugmaker currently manufactures two PrEP medications.

The program also helps Carlo generate money to cover the care people on the medication need, like regular doctor visits and lab tests.

Without Gilead's help, Carlo said, "none of these people would be in care with us."

Nationwide, safety-net clinics like Prism Health North Texas rely on Gilead's Advancing Access Patient Assistance/Medication Assistance Program to fund services that keep patients in need HIV-negative.

In April, Gilead announced it will change how much it reimburses through that assistance program. For pharmacies that contract with certain safety-net clinics, like Prism Health, the change means less reimbursement cash to pass along to the clinics.

The domino-like impact of the company's move means Prism Health may lose between $2 million and $3 million annually, Carlo estimated.

The Advancing Access program offers free medicine to the uninsured. In the simplest terms, pharmacies dispense Gilead's drugs at no charge to qualifying patients. The pharmacies then file claims with Gilead, which reimburses them.

Shannon Stephenson, who runs a network of safety-net clinics called Cempa Community Care in Chattanooga, Tennessee, said the new policy means she will have to work with a tighter budget and find another way to afford the nearly $2,000 in yearly medical services alone each patient on PrEP needs.

"It could really cause a shift in what HIV looks like in the future," Stephenson said. "This is not the time to be creating any more barriers to getting people into care."

Coy Stout, Gilead's vice president of U.S. commercial access and reimbursement, said that before it changed its policy the company did not know safety-net clinics relied on this money to fund critical services.

Gilead announced the change after discovering it was reimbursing pharmacies at a higher price than what most of them were spending to replace the drugs.

The company declined to tell how much money it will save, but Stout said the move will help keep the aid program sustainable.

In 2020, according to a Gilead press release, the company earned $24.4 billion in product sales.

"This is a program to provide free medication," Stout said, "not free medication and other services."

Currently, the drug company reimburses pharmacies the retail price of the drugs. For HIV prevention medications, the cost is substantial. Gilead's PrEP medicines, Truvada and Descovy, cost more than $1,800 for a 30-day supply, said Sean Dickson, director of healthcare policy at the West Healthcare Policy Center.

In 2022, Gilead will give pharmacies "the amount paid" for each bottle of medicine. Certain safety-net clinics will be harmed by the change because they participate in a separate program called 340B.

The federal program requires pharmaceutical companies to sell their medications to safety-net providers at a discount. Although the size of the discounts the drugmakers offer is confidential, the government estimates they range from 25% to 50%.

In short, that means clinics that participate in the 340B program will be reimbursed for the discounted price of the drug, which will cut how much they can pocket from the Advancing Access program.

Dickson said the amount clinics keep from Gilead's aid program is a critical source of revenue to pay for services and medicines for patients in need who can't get them otherwise.

"These really are needy populations that are being served by them," Dickson said.

Clinics that participate in the 340B program play a crucial role in treating patients at risk of contracting HIV, said Tim Horn, director of healthcare access for NASTAD, the National Alliance of State and Territorial AIDS Directors.

He's particularly concerned about providers in the South, where rates of HIV and the uninsured are among the nation's highest. The region accounted for over half of all HIV diagnoses in 2018, the Centers for Disease Control and Prevention reported.

Small, grassroots clinics in the South are "gonna live or die by the 340B savings," said Horn.

The financial upheaval of Gilead's change in reimbursement adds fodder to larger questions about the 340B program as a viable source of funding for PrEP services.

Several drugmakers have recently released generic PrEP medicines priced significantly lower than Gilead's brand-name offerings. Dickson said lower drug prices are a positive development for patients because it makes healthcare more affordable for everyone.

However, he added, transitioning to generic PrEP would prevent 340B clinics from generating money off the drug company's aid.

That said, relying on high drug pricing to fund the nation's safety net "is not a sustainable path forward," said Dickson. "We actually need to pay for things that work rather than paying too much for prescription drugs."

KHN senior correspondent Sarah Jane Tribble contributed to this report.

Carmen Heredia Rodriguez: CarmenH@kff.org, @ByCHRodriguez

New Montana Laws Enshrine Healthcare Alternatives, for Better or Worse

KFF Health News, June 10, 2021

Direct primary care practices have been emerging around the country, but they are often criticized for not offering the patient safeguards of traditional insurance.

This article was published on Thursday, June 10, 2021 in Kaiser Health News.

By Andrea Halland

When Paul Rana's primary care physician left the VA clinic in Kalispell to open her own practice, he followed her. But instead of picking up a new health insurance policy, Rana and his partner agreed to pay a monthly fee that came with the promise of better access.

Their provider, Dr. Lexi Tabor-Manaker, opened Glacier Direct Primary Care clinic in 2018. The model known as DPC, which can also stand for direct patient care, furnishes basic healthcare to patients for a set fee, often billed monthly like a subscription. The arrangement offers patients unlimited access to their doctors and allows them to communicate by phone or email. But the costs are all out-of-pocket.

"We have been pleased to be able to communicate with her instantly without going through an administrative gauntlet," as he might with the Department of Veterans Affairs, Rana said.

Direct primary care practices have been emerging around the country, but they are often criticized for not offering the patient safeguards of traditional insurance. State legislators this year, however, sought to preserve the approach and passed two new laws that prohibit direct primary care practices or healthcare sharing ministries — religious or ethical groups whose members pool money to cover medical costs — from being regulated as insurance.

Such arrangements, according to supporters, afford greater flexibility and lower costs for healthcare compared with traditional health insurance. Without these laws, "a future commissioner of insurance may deem them to be insurance and require them to come under the health insurance regulatory scheme, thus destroying their value and defining characteristics," said Sen. Tom McGillvray (R-Billings), sponsor of the bill on healthcare sharing ministries.

Lack of regulation comes with risks. Patients in direct primary care and healthcare sharing ministries mostly miss out on consumer protections mandated by the Affordable Care Act, such as coverage of preexisting conditions and prohibitions against charging more based on gender.

Some healthcare sharing ministries have developed into large nationwide organizations, such as Medi-Share and Trinity HealthShare. Critics of that model say the unregulated ministries aren't required to cap out-of-pocket costs or pay claims and can refuse coverage for certain treatments. They can also have annual and lifetime benefit caps.

In Montana, a pastor filed a lawsuit in 2007 after Medi-Share refused to pay for expenses for a member's heart condition. A state judge ruled the group was selling insurance without registering in the state, effectively banning healthcare sharing ministries. That changed in 2017 when Matthew Rosendale, then insurance commissioner, declared the programs weren't health insurance and could operate in the state.

McGillvray's bill cements Rosendale's ruling into state law.

Eight direct primary care facilities operate in Montana with out-of-pocket fees that typically range from $70 to $120 per month for an adult, according to DPC Frontier.

Supporters of direct primary care said the model lets doctors spend more time with patients. Physicians told lawmakers that when working with traditional insurance plans they might spend a significant chunk of their days on administrative tasks instead of patient care, according to Sen. Cary Smith (R-Billings), sponsor of the direct primary care bill.

That bill allows for any form of healthcare practice — therapists, dentists, physical therapists, etc. — to operate under the direct primary care model.

Direct primary care agreements don't cover hospital visits, prescription drugs, surgery or specialized care, such as cancer treatment. Providers and supporters recommend people sign up for health insurance to cover those costs.

Another criticism, one leveled by traditional health insurers, is that the monthly fee often doesn't save people money. Patients would have to go to the doctor several times a year to make the direct primary care monthly payments worthwhile, and people usually don't make that many visits, said Richard Miltenberger, CEO of Mountain Health Co-Op, a nonprofit health insurance cooperative that sells health insurance in Montana, Idaho and Wyoming.

"So, it's actually often, for many consumers, more cost-effective to just pay for the service [that isn't covered by insurance] when you utilize it, as you utilize it, as opposed to paying a monthly membership fee," Miltenberger said.

Rana, a retired Army veteran who lives in Woods Bay, doesn't fully depend on direct primary care for his healthcare. He still uses the VA clinic for regular checkups. He also has Medicare and Tricare — a health program for military members and their families — for larger procedures he gets outside of the VA, such as when he had knee surgery in 2020.

But his first stop when he noticed something wrong with his knee was with Tabor-Manaker, who saw him quickly and referred him to a specialist. That makes the expense worth it, he said.

"I knew going in that this was all out-of-pocket for me, and I accepted that because the quality of service is far greater in its value to me than the hundred bucks a month," Rana said.

Can a Subscription Model Fix Primary Care in the US?

KFF Health News, June 10, 2021

Loads of other firms, ranging from small start-ups to larger, more established companies, are selling similar concepts of new and improved primary care.

This article was published on Thursday, June 10, 2021 in Kaiser Health News.

By Bernard J. Wolfson

In April, San Francisco-based primary care company One Medical revealed an eye-popping compensation package for its chief executive and chairman, Amir Dan Rubin. His $199 million payday, particularly noteworthy at a company that has yet to turn a profit, made Rubin the second-highest-paid CEO in the United States last year — but only on paper.

About $197.5 million of his pay is in stock options. For Rubin to get all that cash, the stock of One Medical, traded as 1Life Healthcare, must rise sharply over the next seven years, to nearly triple its current price.

In short, his compensation is less a quick jackpot than a general statement of One Medical's ambitious vision of primary care that is more accessible, technologically enabled and patient-friendly, while cutting health costs for employers and individuals.

Loads of other firms, ranging from small start-ups to larger, more established companies, are selling similar concepts of new and improved primary care.

Some offer it directly to individuals; others target Medicare enrollees. Perhaps the most promising customers are employers, who insure an estimated 157 million U.S. workers and their dependents, and have long been frustrated with spotty primary care and perpetually rising health costs.

The "direct" primary care companies, as they are often called, face stiff competition from one another as well as the large regional health systems and their affiliated physician groups, which still dominate the field.

Analysts say these emerging primary care companies have significant room for growth because of mounting frustration with the medical status quo and because they currently have only a tiny share of the $260 billion U.S. primary care market.

"I think that, ultimately, they're going to grow in acceptance and accumulate patients and attract clinicians that want to provide a different level of care," said Richard Close, managing director of health equity research at Canaccord Genuity in Nashville, Tennessee. But he added that "all of these companies combined could grow very significantly and just put a dent in the overall system."Bottom of Form

Also vying for a share of the primary care market are urgent care centers and walk-in clinics at retailers such as Target and pharmacies such as  CVS, in addition to telehealth companies like Teladoc and Doctors on Demand.

In a sharp reminder of the competitive challenges ahead, the share prices of One Medical and Teladoc sank in mid-March after Amazon announced plans to begin offering its telehealth and home visit service as an employee benefit nationwide.

"Amazon is a threat, because Amazon knows how to appeal to consumers," said Gary Kurtzman, a Wharton Business School lecturer and managing director of Prostasia Health, a health tech investment advisory firm.

The appeal of these companies has grown as employers increasingly seek to address a shortage of high-quality primary care and reduce spending on the health of their workforce, said Ellen Kelsay, CEO and president of the Business Group on Health, which represents large employers.

Studies show a strong correlation between access to primary care and lower spending on expensive medical services such as ER visits, surgeries and hospital admissions. Yet in the United States, primary care accounts for only around 5% to 7% of total health spending, compared with 14% in the 36 member nations of the Organization for Economic Cooperation and Development.

The big bet of One Medical and companies like it is that greater spending on primary care will fatten their bottom lines while reducing overall health costs for their clients.

A study published last year in JAMA Network Open showed that employees of Hawthorne, California-based SpaceX who got most of their primary care at One Medical's on-site health clinic generated 109% more in spending on primary care but 45% less on healthcare overall than those who used One Medical infrequently or not at all.

These direct primary care companies typically offer a digital platform as the first point of contact, which enables members to make appointments and text, email or video chat 24/7 with their medical providers.

They wed that technology to brick-and-mortar clinics staffed by doctors, nurse practitioners and medical staff, where members can go for checkups, prescription drugs, lab tests, scans, vaccinations, physical therapy and mental health visits. The patients generally get more time with their providers than in a traditional medical office.

One Medical's focus is improving healthcare for "multiple stakeholders simultaneously," Rubin said in a recent interview with KHN. "How do we delight consumers, serve employers and payers? How do we make medicine the best environment for providers to work in?"

Part of the company's answer is to put doctors on salary rather than paying a fee for every visit. That eliminates the pressure to book a lot of visits, which Rubin said helps physicians spend more time with each patient.

One Medical will offer its combination of telehealth and in-person visits in 22 metropolitan areas around the United States within a year or so, up from nine in 2020, Rubin said. It had nearly 600,000 members at the end of March, up 31% from a year earlier. When One Medical started in 2007, it sold only individual memberships, for which it currently charges $199 a year. But it has since moved increasingly into the employer market. Anecdotally, its patients are happy with the care they get.

"One Medical says your appointment is at 10 a.m., and my nurse practitioner is walking out at 10 a.m. to get me," said Kathleen Wiegand, 63, a One Medical member in Washington, D.C. "I've never had to wait for an appointment."

Brentwood, Tennessee-based Premise Health is the biggest player in the employer segment of the direct care market, with over $1 billion in annual revenue, 11 million employer-sponsored members via 1,600 large corporate and municipal employers and about 850 health centers. Most of those centers are at the worksites of its corporate and local government customers.

"Our bet going forward is that it's the combination of digital and physical access that will drive sustained value and better experience for the member, instead of pure digital or pure physical," said Jami Doucette, president of Premise.

Doucette said his company provides an entry point to medicine that is "an alternative to primary care physicians owned by hospitals who are driven by volume of expensive procedures."

Eden Health, a start-up headquartered in New York City, provides a similar service to small and midsize employers, and is also contracting directly with commercial real estate companies that want to provide on-site medical facilities for the businesses that are their tenants.

As the pandemic eases and many workers return to offices with safety on their minds, providing on-site medical care can help commercial landlords command higher rents, said Matt McCambridge, Eden Health's 29-year-old co-founder and CEO. "What the landlords are trying to do is craft an amenity package that allows them to be a class-A, high-end location, and health is really a key part of that," he said.

San Francisco-based start-up Forward Health, on the other hand, markets itself exclusively to individuals. It charges a flat monthly fee of $149 for access to digital health, in-person visits and technology the company says can scan for signs of skin cancer, perform genetic analyses and return comprehensive blood test results in 12 minutes.

While positioning themselves as "disrupters" in an industry that emphasizes volume of services over health, many direct care companies nonetheless participate in the networks of their members' health plans, and some receive fee-for-service payments from those plans.

One Medical, for example, gets about 37% of its revenue from such payments.

"That's just the way the U.S. health system is organized. If you want to easily serve people, you say, 'Hey, I accept your insurance.' And if you want to easily serve employers, you say, 'I'm in your network,'" Rubin said.

"But the powerful thing is that without changing how the system pays, we can still reduce the cost of care," he added. "We don't have to wait for some mythical unicorn of a reimbursement system to get these kinds of results."

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

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

Lawmakers Pressure Newsom to 'Step Up' on Racism as a Public Health Issue

KFF Health News, June 10, 2021

State Democratic lawmakers are not waiting for Newsom to make a declaration.

This article was published on Thursday, June 10, 2021 in Kaiser Health News.

By Angela Hart

SACRAMENTO — After the killing last year of George Floyd, a Black man, by a white Minneapolis police officer, Wisconsin Gov. Tony Evers declared racism a public health crisis. The governors of Michigan and Nevada quickly followed, as have legislative bodies in Minnesota, Virginia and Washington, D.C.

Yet California Gov. Gavin Newsom, who governs one of the most racially and ethnically diverse populations in the U.S., has not.

State Democratic lawmakers are not waiting for Newsom to make a declaration and are pressuring the first-term Democrat to dedicate $100 million per year from the state budget, beginning July 1, to fund new health equity programs and social justice experiments that might help break down systemic racism. Possibilities for the funding include transforming parking lots in low-income neighborhoods into green spaces and giving community clinics money to distribute fresh fruit and vegetables to their patients.

Lawmakers say COVID's disproportionate impact on California's Black and Latino residents, who experienced higher rates of sickness and death, makes their request even more pressing.

"COVID uncovered the disparities of the segregated California of the past that still has an effect today, and that we can correct if we focus on equity," said Assembly member Mike Gipson (D-Carson), who is spearheading the funding push. "We need to build a healthier society that works for everyone."

Lawmakers are lobbying for the money in their negotiations with the governor over the 2021-22 state budget. The legislature must pass a budget bill by June 15 for the fiscal year beginning July 1. Once Newsom receives the bill, he has 12 days to sign it into law.

The $100 million proposal to address the health effects of racism is part of the Democratic-controlled legislature's broader public health agenda that includes a request for $235 million annually to help rebuild gutted local public health departments, $15 million per year for transgender healthcare and $10 million to establish an independent "Office of Racial Equity," which would attempt to identify and address racism in state spending and policies.

Healthcare advocacy groups say the investments are critical to address inequality in society and the healthcare system that has contributed not only to higher rates of COVID within disadvantaged communities, but also chronic diseases like diabetes and heart disease.

"Those who got sick and lost jobs were mostly communities of color, so seeing no new investment from the governor to really tackle racial equity is unconscionable," said Ronald Coleman, managing director of policy for the California Pan-Ethnic Health Network, which sent Newsom a letter last July asking him to declare racism a public health crisis.

Newsom hasn't committed to supporting the funding but said he'd be "very mindful" in negotiations with lawmakers. One proposal Newsom and state lawmakers agree on is funding for a chief equity officer to address racial disparities within state government.

Newsom pointed to other budget proposals he has made, including $600 economic stimulus payments to households earning less than $75,000, rent and utility bill assistance, and an expansion of the state's Medicaid program for low-income residents, called Medi-Cal, to unauthorized immigrants age 60 and older.

Dr. Georges Benjamin, executive director of the American Public Health Association, said George Floyd's killing in May 2020 motivated state and local lawmakers to look at racism through the lens of public health — which could have helped save lives during the COVID pandemic. "We're at a tipping point," Benjamin said. "It's important to first acknowledge that racism is real, but then it requires you to do something about it. We're now seeing other states beginning to put money and resources behind the words."

Some cities and counties in California have declared racism a public health crisis, including Los Angeles and San Bernardino County. But those declarations would be more meaningful backed by an infusion of state resources, healthcare advocates say.

"We need to be willing to put dollars into innovative approaches to addressing racism in the same way we invest in stem cells, and we need to be willing to accept that some of the things we try will work and some won't," said Kiran Savage-Sangwan, executive director of the California Pan-Ethnic Health Network.

Should Newsom sign off on the funding, grants would be available to health clinics, Native American tribes and community-based organizations to develop programs aimed at combating racism and health disparities.

The Community Coalition in South Los Angeles, a nonprofit that originally set out decades ago to address the crack epidemic, expressed interest in applying.

"There are so many vacant lots in South Los Angeles that could be turned into mini-parks. That helps not only with physical health but mental health," said Marsha Mitchell, the organization's communications director. "We have very few grocery stores, and if you live in Compton or South Los Angeles, your life expectancy is almost seven years lower than if you lived in Santa Monica, Beverly Hills or Malibu."

Directing more resources to address racism could backfire, in part because voters, including some Democrats, have displayed skepticism over some of the liberal and expensive policies sought by Democrats who control Sacramento, said Mike Madrid, a Sacramento-based Republican political consultant who has also worked for Democrats.

He pointed to Proposition 16, the November 2020 ballot initiative that would have repealed California's 1996 law banning affirmative action, which was defeated 57% to 43%.

"Racism is very much a public health problem — just look at the chronic diseases and lower life expectancies of Black and brown people, and most people believe that racism is systemic in our governance," Madrid said. "But voters are becoming more discerning about how racism is being used by politicians to advance an agenda."

Focusing too heavily on racism could prompt a backlash, he said, "whereas if you focused on poverty and inequality, that would solve many of the racial problems."

But state Sen. Richard Pan (D-Sacramento), who is leading the drive to establish an Office of Racial Equity, said funding and state leadership focused intensely on structural racism are essential to ending it. Should the office not be funded in the budget, Pan said he'd press forward with a bill.

The office would work with the state's new chief equity officer to examine the California government, including state hiring practices, proposed legislation and budget spending decisions, for evidence of racism or inequality.

It's a priority for the legislature's Asian & Pacific Islander Legislative Caucus, given the rise in hate crimes perpetrated against people of Asian descent, Pan said.

"We need to invest more in prevention," Pan said. "The state needs to step up and support communities of color."

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Angela Hart: ahart@kff.org, @ahartreports

Women Now Drink as Much as Men — And Are Prone to Sickness Sooner

KFF Health News, June 9, 2021

For nearly a century, women have been closing the gender gap in alcohol consumption, binge-drinking and alcohol use disorder.

This article was published on Wednesday, June 9, 2021 in Kaiser Health News.

By Aneri Pattani

Victoria Cooper thought her drinking habits in college were just like everyone else's. Shots at parties. Beers while bowling. Sure, she got more refills than some and missed classes while nursing hangovers, but she couldn't have a problem, she thought.

"Because of what my picture of alcoholism was — old men who brown-bagged it in a parking lot — I thought I was fine," said Cooper, now sober and living in Chapel Hill, North Carolina.

That common image of who is affected by alcohol disorders, echoed throughout pop culture, was misleading over a decade ago when Cooper was in college. And it's even less representative today.

For nearly a century, women have been closing the gender gap in alcohol consumption, binge-drinking and alcohol use disorder. What was previously a 3-1 ratio for risky drinking habits in men versus women is closer to 1-to-1 globally, a 2016 analysis of several studies suggested.

And the latest U.S. data from 2019 shows that women in their teens and early 20s reported drinking and getting drunk at higher rates than their male peers — in some cases for the first time since researchers began measuring such behavior.

This trend parallels the rise in mental health concerns among young women, and researchers worry the long-term effects of the COVID-19 pandemic could amplify both patterns.

"It's not only that we're seeing women drinking more, but that they're really being affected by this physically and mental health-wise," said Dawn Sugarman, a research psychologist at McLean Hospital in Massachusetts who has studied addiction in women.

Research shows women suffer health consequences of alcohol — liver disease, heart disease and cancer — more quickly than men and even at lower levels of consumption.

Perhaps most concerning is that the rising gender equality in alcohol use doesn't extend to the recognition or treatment of alcohol disorders, Sugarman said. So even as some women drink more, they're often less likely to get the help they need.

In Cooper's case, drinking eventually led her to drop out of college at the University of North Carolina-Chapel Hill. She moved back home and was soon taking a shot or two of vodka each morning before heading to the office for her finance job, followed by two at lunch.

When she tried to quit on her own, she was quickly pulled back by the disease.

"That's when I got scared, when I tried to not drink and only made it two days," said Cooper, now 30. "I was drinking for survival, basically."

Drinking to Cope

Although the gender gap in alcohol consumption is narrowing among all ages, the reasons differ. For people over 26, women are increasing their alcohol consumption faster than men. Among teens and young adults, however, there's an overall decline in drinking. The decline is simply slower for women.

That may sound like progress, said Aaron White, a senior scientific adviser at the National Institute on Alcohol Abuse and Alcoholism. But it may indicate larger underlying issues.

"We have a real concern that while there might be fewer people drinking, many of those who are drinking might be doing so specifically to try to cope," White said. "And that is problematic."

Research suggests that people who drink to cope — as opposed to drinking for pleasure — have a higher risk of developing alcohol-use disorder. And while every individual's reasons for drinking are different, studies have found women are more likely to drink to cope than men.

In Cooper's teenage years, alcohol helped her overcome social anxiety, she said. Then she was sexually assaulted, and a new pattern emerged. Drink to deal with trauma. Experience new trauma while drinking. Repeat. "It's hard to get out of that cycle of shame, drinking and abuse," Cooper said.

Women are statistically more likely to experience childhood abuse or sexual assault than men. In recent years, studies have found rates of depression, anxiety, eating disorders and suicide are climbing among teenaged and young adult women. That could be driving their alcohol use, White said.

And the layers of stress, isolation and trauma from COVID could make things worse.

One study that looked at alcohol's effects on college students early in the pandemic found increased alcohol use among those who reported higher levels of stress and anxiety. And several studies found women were more likely to report rises in drinking during the pandemic, especially if they experienced increased stress.

"For us to address issues with alcohol, we also need to address these pervasive issues with mental health," White said. "They are all related."

What's more, despite alcohol's temporary calming properties, it actually increases anxiety, and studies show it causes brain damage and may be lead to depression more quickly in women than in men.

When Gillian Tietz began drinking in graduate school, she found a glass of wine helped ease her stress. But as soon as the glass emptied, her concerns worsened. Within a year, she began drinking daily. Anxiety kept her up at night and she started having suicidal thoughts, she said.

It was only when Tietz took a brief reprieve from alcohol that she noticed the connection. Suddenly, the suicidal thoughts stopped.

"That made the decision to quit really powerful," said Tietz, 30, who now hosts a podcast called Sober Powered. "I knew exactly what alcohol did to me."

Rising Risks: From Hangovers to Cancer

Until the 1990s, most research on alcohol focused on men. Now, as women approach parity in drinking habits, scientists are uncovering more about the unequal damage alcohol causes to their bodies.

Women generally have less body water, which dissolves alcohol, than men of the same weight. That means the same number of drinks leads to higher concentrations of alcohol in the blood, and their body tissues are exposed to more alcohol per drink.

The result? "From less years of alcohol use, women are getting sicker faster," said Sugarman, of McLean Hospital.

They're at greater risk for hangovers, blackouts, liver disease, alcohol-induced cardiovascular diseases and certain cancers. One study found alcohol-related visits to the emergency room from 2006 to 2014 increased 70% for women, compared with 58% for men. Another paper reported that the rate of alcohol-related cirrhosis rose 50% for women, versus 30% for men, from 2009 to 2015.

Yet when it comes to prevention and treatment of alcohol-related health issues, "that message is not really getting out there," Sugarman said.

As part of a research study, Sugarman and her colleagues gave women struggling with alcohol use information on how alcohol affects women differently than men. Some participants had been in detox 20 times yet had never heard this information, Sugarman said.

Research from Sugarman's colleagues found that women with alcohol use disorder had better outcomes when they were in women-only treatment groups, which included a focus on mental health and trauma, as well as education about gender-specific elements of addiction.

For Cooper, enrolling in a 90-day residential treatment program in 2018 drastically changed her own perception of who is affected by addiction. She found herself surrounded by other women in their 20s who also struggled with alcohol and other drugs. "It was the first time in a very long time that I had not felt alone," she said.

In 2019, she returned to UNC-Chapel Hill and finished her degree in women's and gender studies, even completing a capstone project on the links among sexual violence, trauma and addiction.

Although 12-step programs have helped Cooper stay sober for 3½ years now, she said, a downside to those efforts is that they are often male-dominated. Literature written by men. Advice geared toward men. Examples about men.

Cooper plans to return to school this fall for a master's in social work, with the goal of working to change that.

Aneri Pattani: apattani@kff.org, @aneripattani

Zooming Into the Statehouse: Nursing Home Residents Use New Digital Skills to Push for Changes

KFF Health News, June 9, 2021

The combination of a virtual legislature and nursing home residents equipped with internet access has created an opportunity most nursing home residents rarely have — to participate in their government up close and in real time.

This article was published on Wednesday, June 9, 2021 in Kaiser Health News.

By Susan Jaffe

Patty Bausch isn't a Medicaid expert, lawyer or medical professional. But she still thinks Connecticut legislators need her input when they consider bills affecting people like her — the roughly 18,000 residents who live in the state's nursing homes.

With help and encouragement from Connecticut's Long Term Care Ombudsman Program, Bausch signed up and testified remotely before a legislative hearing this year. Nursing home residents who have been using digital technology to reach out to family and friends — after the COVID pandemic led officials to end visitation last year — could also use it to connect with elected officials once the legislature moved to remote hearings. Speaking into an iPad provided by the ombudsman's office, Bausch testified without ever leaving her room at the Newtown Rehabilitation & Healthcare Center, where she has lived since having a stroke three years ago.

The combination of a virtual legislature and nursing home residents equipped with internet access has created an opportunity most nursing home residents rarely have — to participate in their government up close and in real time.

After Bausch signed in to watch the hearing, a committee clerk signaled when her turn was next. She had the spotlight and just three minutes to make her point.

"At first it was a little intimidating because you want to make sure you don't say the wrong thing," said Bausch, who never testified before. The feeling quickly passed when she looked down at her notes. She explained why she supported a $12.50 raise in the $60 monthly allowance the state provides Medicaid residents to pay for personal items, such as toiletries, phone bills or even a greeting card. Her words reflected experience few other witnesses offered.

"I know what it's like to have no money," she said later. "I live it."

After visitors were banned last year, the ombudsman program, a federal- and state-funded consumer advocate for nursing home residents, and the state public health department distributed tablets for virtual visits with relatives and friends. The ombudsman bought theirs using federal aid and the state agency provided 800 tablets to nursing home residents last year using money collected from fines the nursing homes paid to settle health and safety violations.

Mairead Painter, Connecticut's long-term care ombudsman, frequently advises legislators and testifies at hearings, but she also urges residents to speak for themselves.

"I think that people underestimate the abilities that individuals have because of the [institutional] setting where they receive their long-term services and support," said Painter. "Your opinions don't go away because you had some sort of a medical event." And not all residents are extremely elderly, frail or unable to communicate.

"For years, nursing homes were thought to be a place where people go to die," said Jeanette Sullivan-Martinez, who has lived at the Pendleton Health & Rehabilitation Center in Mystic, Connecticut, since 2008. "But now these are places where people go to live to the best that they possibly can."

She has testified in person and virtually as president of the Statewide Coalition of Presidents of Resident Councils. She has multiple sclerosis, limited movement in her arms and hands and is unable to walk. When she testified in person in 2019, she was accompanied by a nursing aide and made the hour-long trek to Hartford and back in a van that could accommodate her wheelchair. The ombudsman's office covered her expenses.

Before the lockdown, some people might have been able to testify over the telephone or submit written comments, but the only way to be seen and heard was to register in advance, travel to the capital, make your way to the hearing room and then wait your turn. Since everyone who signs up is allowed to speak, you could be waiting several hours, said Anna Doroghazi, Connecticut AARP's advocacy director, who works closely with legislators and their staffs.

But when Sullivan-Martinez testified using her tablet this year, all she needed was someone to help her connect to the hearing from her nursing home room. With several dozen witnesses scheduled before her, she also made sure it was plugged in so the battery wouldn't run down during the long wait.

"I am thrilled that I have the opportunity to use my voice for myself as well as for all of those other residents living in nursing homes that I represent, to be able to have a voice on issues that affect us," she said.

The ombudsman's website has a special "advocacy center" page to help residents and their families keep up with the latest legislative action and tips for participating in the law-making process.

During Painter's regular Facebook chats with residents and their families, she provides updates on pending legislation and other news. In response to questions, she reviews the ins and outs of virtual legislative hearings. Doroghazi also has hosted a virtual intensive boot camp for resident council presidents about what legislators want to hear and how to tell their stories.

So far this year, nursing home residents have testified in support of legislation to improve staffing levels, create a designated "essential support person" with special visitation privileges, and allow "technology of their choice" in their rooms to communicate with whomever they wish, among other proposals. The latter passed unanimously in both chambers, said Doroghazi, "and we expect the governor to sign it into law."

Rep. Anne Hughes, vice chair of the Joint Committee on Aging who also works in a nursing home as a social worker, said she would like the option for virtual testimony to be permanent.

A bill to do that has been introduced. Committees or public agencies holding hearings would be required to accept testimony from members of nursing home councils and family councils "in a manner and format that provides for the greatest input … via technology with audio or video capabilities."

"The COVID pandemic has definitely opened the way we do the people's business," said Hughes.

Susan Jaffe: Jaffe.KHN@gmail.com, @SusanJaffe

An Anti-Vaccine Film Targeted to Black Americans Spreads False Information

KFF Health News, June 9, 2021

A group called Children's Health Defense — prominent in the anti-vaccine movement — is promoting its new film, "Medical Racism: The New Apartheid."

This article was published on Wednesday, June 9, 2021 in Kaiser Health News.

By Will Stone

When a filmmaker asked medical historian Naomi Rogers to appear in a documentary, the Yale professor didn't blink. She had done these "talking head" interviews many times before.

She assumed her comments would end up in a straightforward documentary that addressed some of the most pressing concerns of the pandemic, such as the legacy of racism in medicine and how that plays into current mistrust in some communities of color. The subject of vaccines was also mentioned, but the focus wasn't clear to Rogers.

The director wanted something more polished than a Zoom call, so a well-outfitted camera crew arrived at Rogers' home in Connecticut last fall. They showed up wearing masks and gloves. Before the interview, crew members cleaned the room thoroughly. Then they spent about an hour interviewing Rogers. She discussed her research and in particular controversial figures such as Dr. James Marion Sims, who was influential in the field of gynecology but who performed experimental surgery on enslaved Black women during the 1800s without anesthesia.

"We were talking about issues of racism and experimentation, and they seemed to be handled appropriately," Rogers recalled. At the time, there were few indications that anything was out of the ordinary — except one. During a short break, she asked who else was being interviewed for the film. The producer's response struck Rogers as curiously vague.

"They said, 'Well, there's 'a guy' in New York, and we talked to 'somebody in New Jersey, and California,'" Rogers told NPR. "I thought it's so odd that they wouldn't tell me who these people were."

It wasn't until March that Rogers would stumble upon the answer.

She received an email from a group called Children's Health Defense — prominent in the anti-vaccine movement — promoting its new film, "Medical Racism: The New Apartheid."

When she clicked on the link and began watching the 57-minute film, she was shocked to discover this was the movie she had sat down for back in October.

"I was naive, certainly, in assuming that this was actually a documentary, which I would say it is not. I think that it is an advocacy piece for anti-vaxxers," Rogers said. "I'm still very angry. I feel that I was used."

The free online film is the latest effort by Robert F. Kennedy Jr., the founder of Children's Health Defense. (He's a son of former U.S. Attorney General Robert "Bobby" Kennedy and nephew of President John F. Kennedy.) With this film, Kennedy and his allies in the anti-vaccine movement resurface and promote disproven claims about the dangers of vaccines, while aiming squarely at a specific demographic: Black Americans.

The film draws a line from the real and disturbing history of racism and atrocities in the medical field — such as the Tuskegee syphilis study — to interviews with anti-vaccine activists who warn communities of color to be suspicious of modern-day vaccines.

At one point in "Medical Racism," viewers are warned that "in Black communities something is very sinister" and "the same thing that happened in the 1930s during the eugenics movement" is happening again.

There is a lengthy discussion of the thoroughly disproven link between autism and vaccines. For example, the film references a study from the Centers for Disease Control and Prevention about the measles, mumps and rubella vaccine and autism rates as evidence that African American children are being particularly harmed, but in reality the study did not conclude that African Americans are at increased risk of autism because of vaccination.

The movie then displays a chart claiming to use that same CDC data — obtained through a Freedom of Information Act request — to make a connection between vaccinating Black children and autism risk. The findings in the chart closely resemble another study sometimes mentioned by anti-vaccine activists, but the medical journal later retracted the study, because of "undeclared competing interests on the part of the author" and "concerns about the validity of the methods and statistical analysis." (That study's author was a paid independent contractor for Kennedy's group as of 2020 and sits on its board of directors.)

The film also brings up a 2014 study from the Mayo Clinic that showed Somali Americans and African Americans have a more robust immune response to the rubella vaccine than Caucasians and Hispanic Americans. One of those interviewed in Kennedy's film then asks, "So if you have that process that could be caused by vaccines, why wouldn't there be a link between vaccines and developmental delays?"

But the study's author, leading vaccine researcher Dr. Gregory Poland, said this conjecture is not accurate.

According to a statement provided to NPR by the Mayo Clinic, the study demonstrated "higher protective immune responses in African-American subjects with no evidence of increased vaccine side effects," and any claim of "'increased vulnerability' among African-Americans who receive the rubella vaccine is simply not supported by either this study or the science."

For her part, Rogers, the Yale professor, appears for only about 14 seconds in the film. Her quotes are accurate. But her remarks are embedded in a wider narrative that she has "enormous problems with" — namely that the anti-vaccine movement is heroically engaged in a new civil rights campaign, one meant to stop experimentation on the Black community.

Rogers said the film uses many ideas she holds "passionately, like health disparities, fighting racism in health, working against discrimination, and it's been twisted for the purposes of this anti-vax movement."

Another credible expert from mainstream medicine also appears in the film: Dr. Oliver Brooks, the immediate past president of the National Medical Association. The group is the largest organization representing African American physicians in the United States.

Brooks said he agreed to be in the film because he wanted to provide balance, but after seeing it he regrets doing the interview.

"The crux of the documentary is generally 'Don't get vaccinated,'" Brooks told NPR in a recent interview. "There is an understandable concern in the African American community regarding vaccines — however, in the end, my position is you look past those, have an understanding of those and still get vaccinated. … That nuance was not felt or presented in the documentary."

Kennedy's group released the film in early March, just as the COVID-19 vaccine was becoming widely available to the American public.

"The film basically wants people to recognize this history that leads right into the present, and especially when they're facing decisions about whether they should take any vaccine, including COVID," said Curtis Cost, one of the film's co-producers and a longtime anti-vaccine activist.

Cost said the film does not explicitly tell people to refuse the COVID vaccine, but it "goes all the way to the present experimentations and bad things have been done by the medical establishment in America and in Africa and other parts of the world."

In an emailed statement, a spokesperson for Children's Health Defense denied that the film is misinformation and said it contains "peer reviewed science and historical data."

But the movie is "a classic example of the anti-vaccine industry with a highly targeted message using sophisticated marketing techniques and building alliances with affiliate organizations," said Imran Ahmed, CEO of the nonprofit Center for Countering Digital Hate, which has extensively researched figures such as Kennedy.

"They've seen the opportunity to target a specifically African American audience," he said, during a particular moment of heightened national attention on racial injustices and health disparities.

Black Americans have twice the risk of dying of COVID compared with white Americans. Racial disparities in vaccination uptake persist across the United States.

While there are efforts to improve access to the vaccine, media coverage has also focused heavily on historical reasons for vaccine skepticism — too much, some scholars argue, when the focus should be on how Black Americans experience the impact of systemic racism in healthcare today — and how to fix those problems and improve trust.

"We're in this moment where we're having some necessary discussions about health equity," said Victor Agbafe, a medical student at the University of Michigan. "It's not a good thing to sort of exploit that as a means to undermine trust in the vaccine today, instead of focusing on how we can make the vaccine more accessible for all communities."

Agbafe, who helps lead his school's Black medical student association, was surprised to get an email from Children's Health Defense asking him to promote the movie among his peers.

When it was released, the film did not seem to gain much traction on major social media platforms such as Twitter, although tracking how often this kind of video is being shared privately can be difficult, said Kolina Koltai, a University of Washington researcher who studies the anti-vaccine movement online.

But Kennedy's anti-vaccine activities during the pandemic involve more than this movie.

In February, he was banned from Instagram for posting misinformation on vaccines, but he still has a home on Facebook and Twitter. Ahmed's organization has labeled Kennedy one of the "disinformation dozen" — a group of people responsible for 65% of the shares of anti-vaccine misinformation on social media platforms.

In a recent webinar about the film, Kennedy said those who agree with the film need to use "the tools of advocacy that Martin Luther King Jr. talked about" and promote it "guerrilla-style" against the "darkening cloud of totalitarianism."

Although more than half of American adults have gotten a COVID vaccine, demand is falling fast, and polls show almost one-third of adults still either want to "wait and see" or do not want to get the shot. When asked why, many say the vaccine is unsafe, based on false conspiracy theories.

"I see the downstream ripple effects of disinformation every day in practice, every day in the patients' lives I treat," said Dr. Atul Nakhasi with the Los Angeles County Department of Health Services and co-founder of the online campaign #ThisIsOurShot, which aims to encourage trust in the COVID vaccines.

"We know people have uncertainties, and we need to acknowledge that and have humble, respectful conversations, but for someone to actively subvert that trust is unconscionable," Nakhasi said.

According to the Center for Countering Digital Hate, the ideal strategy for stopping the spread of online misinformation is to cut it off at the source: meaning "deplatform" the most notorious spreaders of that information so they can't gain a following on social media in the first place. But Ahmed said that all too often tech companies don't take those steps themselves. In that case, the next best tactic is to try to "inoculate" people against false and misleading claims.

"You tell people in advance, 'Hey, something terrible is happening. Be careful — they're targeting you,'" Ahmed said.

This story is from a reporting partnership between NPR and KHN.

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