Senator Joe Manchin of West Virginia opposes adding dental and other benefits for Medicare beneficiaries. He says it will cost the federal government too much.

This article was published December 10, 2021, by Kaiser Health News.

By Phil Galewitz

Sharon Marchio misses having teeth for eating, speaking and smiling.

For the past few years, after the last of her teeth were extracted, she’s used dentures. “My dentist calls them my floating teeth because no matter how much adhesive you use, if you eat something hot or warm, they loosen up and it is a pain,” said Marchio, 73, of Clarksburg, West Virginia.

Marchio believes that losing her teeth was merely part of getting older. It’s quite common in West Virginia, where a quarter of people 65 and older have no natural teeth, the highest rate of any state in the country, according to federal data.

Like half of Medicare enrollees nationally, Marchio has no dental insurance. Worries about the costs led her to skip regular cleanings and exams, crucial steps for preventing infections and tooth loss.

Medicare doesn’t cover most dental care, but consumer advocates had hoped that would change this year after Democrats took control of the White House and Congress. President Joe Biden and progressives, led by Sen. Bernie Sanders, sought to add the benefit to a major domestic spending package, the Build Back Better Act, that Democrats are seeking to pass.

But those chances are looking slim because at least one Democratic senator — Joe Manchin of, yes, West Virginia — opposes adding dental and other benefits for Medicare beneficiaries. He says it will cost the federal government too much.

In a Senate split evenly between Republicans and Democrats, losing Manchin's vote would likely sink the proposal, which is unlikely to get any Republican votes.

Last month, the House passed the roughly $2 trillion package of Democrats’ domestic priorities that include health measures, free preschool, affordable housing programs and initiatives to fight climate change. It added hearing services coverage to Medicare but no dental benefit. The package is expected to undergo revisions in the Senate, and Democratic leaders hope a vote will happen in the chamber before the end of the year.

In West Virginia, one of the most heavily Republican states in the country, oral health advocates and progressives say it’s disappointing that Manchin would stand in the way of adding dental coverage for Medicare recipients — particularly given the state’s poor oral health record.

“It is unfortunate that our senator — who I respect and agree with on a lot of things — is going to draw the line on this issue,” said Fotinos Panagakos, associate dean for research at the West Virginia University School of Dentistry and a member of the Santa Fe Group, a think tank made up of scholars, industry executives and former government officials pushing for a Medicare dental benefit. “It would be a huge benefit.”

West Virginia has the third-highest share of people 65 and older, behind only Florida and Maine. Panagakos said that nearly 300,000 West Virginia Medicare recipients would gain dental benefits under the bill. Yet, Manchin’s efforts aren’t likely to cost him politically. He is not up for reelection until 2024.

“What political price do you pay when four other Republicans vote ‘no’ against everything?” Ryan Frankenberry, state director of the progressive Working Families Party in West Virginia, said, referring to the state’s three House members and Sen. Shelley Moore Capito, who all oppose the bill. “It’s a difficult argument to blame one person for not passing the benefit when every other Republican vote went against it.”

Manchin’s opposition, Frankenberry said, stems from the need to respond to the political pressures of representing an increasingly conservative state — and arguments from conservative commentators that Medicare is becoming insolvent and increasing the federal deficit.

Manchin, who did not respond to requests for an interview, has raised concerns about adding new Medicare spending when the Medicare Part A hospital trust fund is slated to become insolvent in 2026 if Congress takes no action. But that fund would not cover the proposed dental benefit; it would become part of Medicare Part B, which covers outpatient services such as doctor visits.

Manchin has also suggested that new social programs being advanced by the Democrats in the Build Back Better Act should be means-tested — in essence, offering the coverage only to people with lower incomes.

Dentists are concerned that Medicare — like Medicaid — would pay less than what they normally charge, said Richard Stevens, executive director of the West Virginia Dental Association.

The American Dental Association has also called for limiting any new Medicare dental benefit through means testing. ADA officials say a means test would ensure the benefit is helping those who really need it and save money for the Medicare program.

But critics say the ADA’s position is an effort by the powerful dental lobby to kill the benefit — because it knows Congress has little appetite to turn to means testing in Medicare. The program remains popular largely because everyone 65 and older is entitled to all its benefits.

“On the surface, their position sounds altruistic,” said Michael Alfano, who is a former dean of the New York University College of Dentistry and helped found the Santa Fe Group. “But there is no interest in Congress to make it a means-tested benefit.”

While adding a Medicare benefit would increase demand for dental services, it would also reduce what are considered dentists’ most lucrative patients, those who pay out-of-pocket and don’t benefit from insurer-discounted fees, Alfano said. “In my mind, the ADA did not have public interest at heart — they put the financial returns of dentists at the top of the ledger when developing this approach,” he said.

Alfano said there is still hope for an eleventh-hour change in the bill. “It’s not dead, but I would be lying if I said I was not disappointed,” he said.

West Virginia seniors have other options for getting dental coverage.

Many get some benefits when they enroll in private Medicare Advantage plans. And in January, West Virginia added an adult dental benefit to Medicaid, the federal-state health insurance program for people with low incomes, giving enrollees an annual maximum benefit of $1,000. Previously, West Virginia was one of about a dozen states that either provided no adult dental benefit to Medicaid recipients or only covered emergencies.

Through September, about 53,000 of the nearly 390,000 adult enrollees in West Virginia’s Medicaid program had used the benefit.

Stevens of the West Virginia Dental Association said he could not explain why so few Medicaid enrollees had used the benefit, though he noted that the $1,000 maximum might not be enough to persuade some to seek care. “For people with more serious oral health conditions, $1,000 does not go very far,” Stevens said. “It’s hardly worth the time for the patient and not worth the time for the dentist.”

Craig Glover, CEO of FamilyCare Health Centers in Charleston, West Virginia, said a Medicare benefit would help the many older patients who come to his dental clinic. He said some patients don’t return for needed follow-up care because of concerns about costs.

Without dental coverage, older adults in West Virginia rely on community health centers — which offer a sliding fee scale based on income — and free health clinics for care. But they can still face higher costs than they can afford or long waits for care.

The dental appointments at the Susan Dew Hoff Memorial Clinic in West Milford, where Marchio has been treated, are booked several months in advance, said office manager Gail Marsh.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Montana nonprofit hospitals receive millions of dollars in tax exemptions as charities each year in exchange for giving back to their communities. A KHN review found that some of Montana's richest medical centers are falling behind most state and national hospitals.

This article was published on December 9, 2021, by Kaiser Health News.

By Katheryn Houghton

Overall, Montana's nearly 50 nonprofit hospitals directed, on average, roughly 8% of their total annual expenses toward community benefits, such as covering the treatment costs of people who can't afford care. That's according to a KHN analysis of the hospitals' IRS filings ending in 2019, which provide a snapshot of hospitals' financial picture from before the pandemic. The national average as of 2018 was 10%, according to the American Hospital Association.

Hospitals self-report how much they give in community benefits, and their reporting processes are opaque. Even so, KHN's analysis found that some of Montana's wealthiest hospitals were spending well below the state and national averages.

Billings Clinic, the state's largest provider, spent roughly 5% of its operating costs on community benefits, while St. Peter's Health in Helena and Benefis Health System in Great Falls each reported less than 2%. By contrast, St. Luke Hospital in Ronan reported 22%.

Federal law doesn't dictate how much nonprofit hospitals must spend on such benefits, and the definition of what counts is vague. How nonprofits record their giving varies, and hospitals say that makes it an unfair measuring stick. However, it's what hospitals themselves report to the IRS.

Montana nonprofit hospitals face little to no oversight of their community benefit spending ― as is the case for much of the nation's nonprofit health systems. That can allow nonprofit hospitals to act more like businesses than charities. Meanwhile, hospitals tend to be among the biggest economic engines in their communities, giving large salaries to their executives while Americans are stuck with at least $141 billion in medical bills they can't afford.

"There are millions of Americans that do not have health insurance, and they need health care," said Gerard Anderson, a health policy professor at Johns Hopkins University who studies hospital giving. "Hospitals are places that have been given tax advantages to help."

Sued for Medical Debt at Benefis

Last year, Taruha Kirkaldie, 33, of Havre got a letter from a debt collector — she was being sued over a nearly $19,000 Benefis Health bill.

Kirkaldie didn't have health insurance in 2018 when a cut on her hand turned into a serious staph infection. She needed to travel to Great Falls for intravenous antibiotics and surgery. She said a hospital staffer helped her apply for Medicaid, the federal-state insurance program for those with low incomes, but her family of five made about $50,000 a year, too much to qualify.

Kirkaldie recalled being told that she wouldn't qualify for the hospital's aid program either because she owned a home in Harlem, Montana, that wasn't her primary residence.

Now Kirkaldie pays about $350 a month to pay off her hospital debt. "We still live paycheck to paycheck," Kirkaldie said.

Benefis Health reported making $49.6 million more than it spent in 2019. Of the $21.5 million it put toward community benefits, $1.4 million went to financial aid. By contrast, Bozeman Deaconess Hospital, a smaller hospital, spent $4.8 million on its financial aid.

Still, Benefis spends more on community benefits than it gets in tax breaks, spokesperson Kaci Husted said. The biggest chunk, according to the IRS filing, was nearly $17 million the hospital absorbed to offer services such as palliative care. The hospital also spent roughly $106,000 for health professional education.

Husted said she couldn't provide details about Kirkaldie's case but added that all the hospital's standard billing notices say patients can apply for financial assistance. She said its denial rate was low but didn't provide specifics. Husted attributed the hospital's limited financial aid to a lack of applications. "Perhaps, at times, people just don't want to go through the work of completing the application," Husted said.

She said a big part of the hospital's financial assistance effort is helping people sign up for public health coverage and that few need financial aid now that many patients qualify for Medicaid as a result of the expansion of the state's program in 2016.

That doesn't help people who don't qualify, like Kirkaldie.

What Counts as a Community Benefit

Montana hospitals use local needs assessments to help them decide how to spend their community benefit money.

Billings' regional assessments found residents needed better access to healthy foods. Melissa Henderson, a manager for Healthy by Designs, a community health coalition, said Billings Clinic, St. Vincent Healthcare and the local health department pay for its two full-time employees, who organize a farmers market and advocate for creating bike paths, among other things.

She said it's powerful to have the area's largest employers advocating for improvements like bike lanes even when no money is given.

"What I see is the hospitals are really doing their best to have an impact on their community," Henderson said.

In the Billings Clinic tax documents that KHN examined, the hospital reported making $73.9 million above its operating costs from July 2018 through June 2019. In that report, the hospital said it doesn't have the resources to address every community need, including the lack of transportation to health care facilities. However, it paid for rides to help patients who otherwise struggled to get to appointments until 2018. It stopped after it instead backed a successful initiative to increase taxes to bolster local transportation programs, among other services.

Mike Larson, executive director of Billings' nonprofit Adult Resource Alliance, said he saw the need for medical rides increase after the hospital stopped picking up patients. Larson said that his ride program for older adults had trouble meeting demand, despite receiving some of the new tax proceeds, and that his biggest concern was whether the partnership with the city would have enough staffers and vehicles to keep up.

Larson said Billings Clinic's business model causes it to act like a for-profit. "They're very cautious in terms of how they approach community support," he said.

The clinic's transportation service was difficult to offer, hospital spokesperson Zach Benoit said, because many patients needed special assistance such as mechanical lift systems to put wheelchairs into a vehicle. The hospital is considering getting an ambulance, but Benoit said that would be costly and require special staffing.

JJ Carmody, Billings Clinic's director of reimbursement, said the health system spent more than $36 million in 2019 on community benefits, including $12.7 million on financial aid and $3.6 million on programs to train health professionals.

"That's significant, and I also believe that's fair," Carmody said. "That's a large portion of our profit that's dedicated to community benefit."

In 2019, Billings Clinic paid its then-CEO Dr. Randall Gibb more than $1.2 million, according to the tax filing.

‘Very Little Motivation to Change'

Hospitals, industry watchdogs and policymakers alike debate what should count as a charitable benefit. And when questioned, hospitals often point to different categories that change the picture of how they perform.

St. Peter's Health reported spending $3.1 million on community benefits from July 2018 through June 2019. That's compared with the estimated $10 million it received in tax exemptions in 2016, according to a state audit presented to lawmakers last year.

Nate Coburn, the hospital's chief financial officer, said benefits would be much higher if the hospital counted services that bring in less money than they cost, such as running a behavioral health unit. The hospital used to count them: A 2016 tax document shows it spent more than $16 million on community benefits. Coburn said St. Peter's is considering correcting its forms to add those numbers.

Montana leaders have known hospitals have a transparency problem. The state audit estimated hospitals combined had $146 million in tax exemptions in 2016. That's money that didn't go toward local tax bases that help fund schools and repair roads.

In exchange, the audit said, hospitals reported spending $257 million on community benefits. But that number came with a huge caveat: The audit found hospitals report benefits vaguely and inconsistently, making it hard to determine if they can justify their charity status.

Opaque hospital filings are an issue nationwide. Some states have created minimum community benefit standards, with Oregon among the latest. There, health systems rely on a formula that sets a minimum for how much charity care hospitals give. But such hard lines are rare.

"There's really no enforcement, with very little motivation to change things," said Dr. Vikas Saini, president of the Lown Institute health care think tank in Massachusetts.

Rich Rasmussen, president of the Montana Hospital Association, said hospitals are working with his organization to come up with more consistent ways to count benefits and plan to share those results online next year. But, he added, tax reports don't capture everything hospitals offer.

"We have hospitals that are still showing incredible outcomes in their quality, and that's a benefit to the community," Rasmussen said. "If we can avoid somebody being readmitted, if we can ensure that somebody can be discharged home, those are pieces that you can tell in the narrative of what you're doing outside of what you might fill out."

But hospital pricing experts, including Anderson, said the tax reports can paint hospitals in too good a light for accomplishing goals any business should have. One example, Anderson said, is counting the cost of staff training as a community benefit.

"Walmart trains their employees, for-profit hospitals train their employees, so it makes no sense to me why a nonprofit hospital should be able to call this ‘community benefit,'" Anderson said.

Montana policymakers have voiced frustration, doubting whether all hospitals pay their fair share. But little has changed.

The state audit recommended that lawmakers define how hospitals report their spending, but no such laws made it out of the legislative session this year. A bill proposed by Republican state Sen. Bob Keenan would have required the state's largest hospitals to jointly hand over $4.3 million for the state to decide how it's spent on community benefits. Hospital lobbyists called the move a "sick tax" and argued it was the wrong time to burden the systems fighting the pandemic. The bill died in committee.

Many of Montana's large hospitals did well financially after the state's expansion of Medicaid, which now provides heavily subsidized health insurance to about 1 in 10 Montanans. And while hospitals have been strained while caring for covid patients, they have also received millions of dollars in federal relief. Nationally, many wealthy hospitals got richer during the pandemic.

The audit recommended the Montana Department of Public Health and Human Services define charity care and create a review process to ensure hospital policies match industry standards. Department spokesperson Jon Ebelt said that the pandemic delayed that work but that it plans to resume it in the coming months.

Saini, of the Lown Institute, said hospitals that are putting a lot toward community benefits have an interest in wanting more transparency — but they're too busy caring for patients to lobby for change. So holding hospitals accountable will likely have to come from political pressure, he said.

"I don't think all of it is just this data issue," Saini said. "There are some hospitals that do more, full stop."

Ad campaign says parts of the legislation would have 'serious unintended consequences' for cancer patients.

A radio ad sponsored by the Community Oncology Alliance, Nov. 29.

An advertisement from the Community Oncology Alliance, part of a $1.6 million campaign running both on radio airwaves and in print, attacks a proposal in the Democratic-backed Build Back Better package approved by the House last month and now headed to the Senate. 

The ads, which started on Nov. 29 and are set to run through Dec. 12, say parts of the legislation would have “serious unintended consequences” for cancer patients — specifically, that “an independent analysis shows that payments for cancer care will be slashed by close to 45%, causing cancer clinics to close and massively raising your healthcare costs.” The alliance is an advocacy and lobbying organization representing physicians and clinics involved with cancer care.

The Build Back Better plan is the Biden administration’s legislative proposal that includes an array of provisions, from plans to curb prescription drug costs to expansion of Medicare coverage. The provision targeted by the alliance’s ad would empower the federal government to negotiate prices for a small set of yet unnamed expensive drugs, including cancer treatments, with the aim of lowering prices, an important campaign promise issued by both President Joe Biden and numerous congressional Democrats. 

That got us wondering: Would the plan really result in reduced payments for cancer care and higher health care costs, as the ads claim?

Because drug pricing and negotiations — as well as the Senate action on the proposal — are such hot news, we took a closer look.

The experts we talked to expressed no doubt that certain provisions of the Build Back Better proposal, if passed into law, would reduce some payments to oncology offices. But we found that the advertisement leaves out key details about the scope of those cuts, an omission that could mislead people who hear or see the ads.

About That Cut

The oncologists’ ad is just one of many ads in recent weeks seeking to sway opinions as Congress considers legislation that would allow Medicare to negotiate drug prices, something it currently cannot do.

At the root of the ad’s claim is the way Medicare pays for drugs administered in doctors’ offices. These payments are particularly important to some specialists, including oncologists. Lower prices paid by the government for these drugs also result in less administrative revenue for physician offices.

Oncologists and other specialists provide injections or infusions in a medical office, covered by Part B of Medicare. Medicare reimburses physicians for the cost of the drug based on its average sales price, plus a 6% “add-on” payment, which is meant to cover the cost of overhead, staffing and the effort that goes into purchasing the drug. (Pre-pandemic, those payments were reduced to 4.3% under a complicated budget sequester process but were reinstated at the higher level for the duration of the health emergency.)

The percentage-based payment formula has the unintended consequence of incentivizing expensive drugs over lower-cost options: A 6% add-on to a $10,000 drug translates to a lot more money than for a $1,000 drug.

Over the years, pharmaceutical companies and physician groups, including the Community Oncology Alliance, roundly criticized attempts to change the formula and succeeded in killing proposals.

The Build Back Better Act, as passed by the House, would have Medicare negotiate prices for a small number of high-priced drugs, including those used by oncologists under Part B, starting in 2025. At first, only 10 drugs would be selected, rising to 20 in 2028.

There would be an upper limit on price, called the Maximum Fair Price, which is expected to be lower than average sales prices. That would save Medicare and taxpayers money on those drugs.

Patients, too, might save money because their copays are set as a percentage of the cost of the drug. Oncologists would still get a 6% add-on fee for overhead and administration, but that 6% would be on a lower price, hence the decrease in revenue that concerns the doctors.

What the Oncologists Say

We reached out to the Community Oncology Alliance to ask about the ad’s assertions that payments for cancer care would be cut by 45%. It provided a number of reports, including one it commissioned by consulting firm Avalere Health, that calculated the possible revenue loss, and a separate study that tracks mergers, acquisitions, closures and financial matters affecting oncology practices.

For its report, Avalere chose 10 drugs it thought were likely to make the administration’s list, then calculated the likely negotiated price and the resulting add-on payments.

While it varies by specialty, the overall average reduction in add-on revenue would be 39% for those specific 10 drugs, with physician offices seeing a 44.2% drop, and hospitals seeing a 36% decline, said Milena Sullivan, a principal with the health policy team at Avalere and the report’s lead author.

But the wording in the ad — “payments for cancer care will be slashed by close to 45%” — glosses over the specifics of that finding. It seems to suggest overall revenue for community cancer clinics would be cut 45%, whereas the reduction identified in the study affects only a segment of their revenue: the add-on payments for some such drugs that clinics and physicians provide.

“They commissioned an analysis that did not look at the total impact on community oncology practice finances. They looked just at drugs affected, which wildly inflates impact,” said Peter Bach, director of the Center for Health Policy and Outcomes at Memorial Sloan Kettering Cancer Center and an expert on drug costs.

Without details on what percentage of a practice’s revenue comes from the add-on payments for a specific set of drugs that has yet to be defined, “we don’t know how much this is going to reduce oncologists’ income,” said Paul Van de Water, a senior fellow in health care policy at the Center on Budget and Policy Priorities.

Ted Okon, executive director for the alliance, defended the wording, saying, “You can only say so much in an ad.”

“Those are the biggest drugs out there,” Okon said. “If you take a hit of 42.9% on 70% of your practice, or even 60%, you are dead in the water.”

However, the alliance didn’t have specific data on the overall percentage of revenue that the add-on payments represent.

Will Cancer Clinics Close?

Okon argues that the revenue hit will be substantial enough that it would lead some practices to close, others to merge and still others to be sold to hospitals. The new maximum prices in Medicare would also affect how private insurers calculate their payments, he said, possibly adding to the revenue woes.

Already, financial pressures have led to closures, mergers or financial difficulty for more than 1,700 community practices over the past 12 years, shifting a portion of cancer care “from independent practice settings to hospitals,” he said.

He thinks that reduces patient choice and could also lead to higher costs for Medicare and patients, because they then seek care at hospitals, which are more expensive.

Joseph Antos, a senior fellow at the American Enterprise Institute, expressed doubts. He said that the Avalere analysis looks correct and that practices will lose a chunk of revenue from add-on payments.

“The impact would be pretty substantial,” he said. “But that doesn’t mean this business about clinics closing is right.”

Our Ruling

The advertisement says an independent analysis shows that under the Build Back Better bill as it’s currently written, “payments for cancer care will be slashed by close to 45% causing cancer clinics to close and massively raising your healthcare costs.”

The advertisement leaves out important context about the analysis.

For one, the cuts it cites are to an unspecified portion of oncologists’ revenue, the add-on revenue for administering certain drugs. Secondly, it isn’t yet known which drugs will be affected. The cuts may well prove substantial for some practices, particularly those that use a lot of the treatments ultimately selected for price negotiation. 

As to closures, even without this change, some clinics will face financial stress leading to mergers, or sales to hospitals, mirroring what is happening in other sectors of the health industry.

The argument that fewer clinics could lead more patients to get cancer care in hospitals — at higher costs to them, to Medicare and to private insurers — is economically plausible. But lower cancer drug costs in Medicare would mean savings for patients, since the program limits copayment amounts for patients who don’t have supplemental insurance to cover those costs.

We rate the ad Half True.

Covid ravaged communities across the United States and laid bare how marginalized populations lose out in the scrum for public health dollars and specific populations were left vulnerable.

This article was published on Tuesday, December 7, 2021 in Kaiser Health News.

By Christine Spolar

The ferocity of the covid-19 pandemic did what Black Pittsburgh — communities that make up a quarter of the city’s population — thought impossible. It shook the norms.

Black researchers, medical professionals and allies knew that people of color, even before covid, experienced bias in public health policy. As the deadly virus emerged, data analysts from Carnegie Mellon and the University of Pittsburgh, foundation directors, epidemiologists and others pooled their talents to configure databases from unwieldy state data to chart covid cases.

Their work documented yet another life-threatening disparity between white and Black Pittsburgh: People of color were at higher risk of catching the deadly virus and at higher risk of severe disease and death from that infection.

More than 100 weeks after advocates began pinging and ringing one another to warn of the virus’ spread, these volunteers are the backbone of the Black Equity Coalition, a grassroots collaboration that scrapes government data and shares community health intel.

About a dozen members of its data team of 60 meet twice weekly to study hospitalization rates and employment statistics. Social media advisers turned health equity into a buzzy online effort, with videos and weekly Facebook town halls, to encourage vaccinations. Local ministries are consulted, and volunteers take surveys at pop-up clinics, sponsored by other groups, at barbershops and hair salons. Elected lawmakers seek its counsel.

“We came together because we were concerned about saving lives,” said Tiffany Gary-Webb, associate dean for diversity and inclusion at the University of Pittsburgh, who oversees the data effort. “It evolved, with us realizing we can do more than address covid.”

Covid ravaged communities across the United States — more than 787,000 Americans have died, including Colin Powell, the first Black secretary of state and a decorated Army general — and laid bare how marginalized populations lose out in the scrum for public health dollars and specific populations were left vulnerable.

Months before the pandemic began, the Rev. Ricky Burgess led the Pittsburgh City Council to declare racism a public health crisis.

“Institutional racism is for real,” the councilman said in a recent interview. “You are talking about generational disproportional investment and generational disproportional treatment. And it impacts all that you see.”

The covid pandemic proved how structural inequities have been missed or ignored, Burgess said.

“I’ve lost friends, family and a lot of church members. My son had covid. For me it’s personal,” he said. “I knew immediately it would have a disproportionate effect.”

In 2020, covid reduced overall U.S. life expectancy by 1.5 years, according to the National Center for Health Statistics. Black and Hispanic people fared the worst, losing more than three years in life expectancy. White people saw a 1.2-year drop.

Using county data, the Black Equity researchers found a sobering racial gap in the Pittsburgh area: Black residents of Allegheny County saw disproportionate hospitalization rates — and were more likely to land in the ICU or on a ventilator — in the pandemic. Weekly hospitalization rates were higher during surges of infection in April, July and December 2020 and again in March and October 2021. Deaths, too, were disproportionate but fluctuated after December 2020.

For much of the pandemic, death rates were higher for African Americans than for other racial groups, the coalition said.

‘It’s All a Shade of Bad’

Kellie Ware has long considered health inequity a deadly problem. She graduated from Pittsburgh public schools, left for law school in Boston, and months before covid began its global assault she was working in her hometown mayor’s office as an equity and diversity policy analyst.

Ware was at her desk in late 2019 when her phone started ringing. A damning report, compiled by university sociologists and the city’s gender commission, had yet again detailed glaring disparities.

The blandly titled report, “Pittsburgh’s Inequality Across Gender and Race,” jolted emotions in the city of 303,000 people — and underscored how health disparities track with income.

Among the findings: Black people in Pittsburgh earned far less than their white neighbors and suffered far worse from disease. For every dollar white men earned, the report found, Black women earned 54 cents, making them five times as likely to live in poverty as white men.

With notably higher cardiovascular disease and cancer rates, Black residents’ life expectancy was about eight years less than white Pittsburghers’.

The report sparked a furor, which Ware met with perspective shaped over years away from the former steel town. “The report was factual,” Ware said, “but I know this: There’s not a ton of places where it’s great to be a Black woman. Those earnings? It’s 54 cents to a dollar for women in Pittsburgh. It’s 68 cents nationally. It’s all a shade of bad.”

The first signs of the pandemic supercharged Ware and others. As covid devastated New York in March 2020, Karen Abrams, a program officer at the Heinz Endowments, a foundation in Pittsburgh that spends $70 million a year on community programs, began connecting the dots in texts and calls with nonprofits, business owners and university researchers.

Covid spread quickly in dense multi-generational households and in Black neighborhoods in Chicago, Washington, New Orleans and Detroit. Abrams was among the advocates in Pennsylvania who watched county and state health systems race to prepare and who feared that Black residents would be underserved.

In Philadelphia, early on in the pandemic, volunteer doctors in mobile units began distributing protective equipment and covid tests in Black neighborhoods. In Pittsburgh, Abrams asked tech-minded allies to document the reality of covid infection in Pittsburgh. “We intuitively knew what was happening,” she said. “But without that data, we couldn’t target our attention and know who needed the help most.”

Within days, volunteers were on daylong rounds of video calls and appealing to county and state bureaucrats for more race-based statistics to bolster their research.

Fred Brown, president of the nonprofit Forbes Funds, and Mark Lewis, who heads the nonprofit Poise Foundation, were stalwarts of a “huddle,” a core of longtime advocates who eventually founded the coalition.

Brown emphasized pulling labor statistics to show that the essential workers keeping the city running — among them nursing homes aides and home care staff — were overwhelmingly Black or Latino.

Mapping covid testing centers and analyzing data proved sobering, he said. It turned out that the people most likely to be tested lived in Pittsburgh’s predominately white neighborhoods. Largely employed in tech, academia and finance, they could easily adapt to lockdowns. They had round-the-clock internet at home and could afford food deliveries to limit the chance of infection. Later, they could access vaccines quicker.

“The communities that had the most tests were the affluent ones,” Brown said. And those with the fewest “were the most resilient, the people who had to go out there and work.”

Lewis, a certified public accountant who spent years as a corporate auditor, focused on standards. County and state health professionals worked mightily to control the spread of covid but didn’t always gather data to ensure fairness in distribution, he said. “We realized that, as testing was done, it was not being recorded by race,” Lewis said. “Why? A lot of the issue was — at the state and the local level — there was no requirement to collect it.”

Gary-Webb said researchers had a sense of where the inequities would be found because they knew the neighborhoods. They first layered in percentages of Black families in poverty as well as data on the locations of federally qualified health centers to advise health authorities on where and when to increase testing.

University and nonprofit researchers found anomalies as they worked. For instance, race was noted on some testing data, with patients designated as Black, white or, inexplicably, unknown. The “unknowns” were a significant percentage. So researchers began layering additional census, labor and ZIP code data, to identify neighborhoods, even streets, at risk.

The ZIP code data took months to shake loose from state databases, largely because government software was slow in the fast-moving pandemic and government data was not updated regularly or formatted in ways that could be easily shared.

Their efforts paid off: The group was able to winnow down Allegheny County records that omit race to 12% of positive covid cases; 37% of statewide records are missing race details, the coalition reported.

Robert Gradeck, who manages the Western Pennsylvania Regional Data Center, a nonprofit data collaborative, said covid should play a lasting role in improving public health reporting. “We kept thinking: What can we learn from this?” Gradeck said. “It’s not that you can’t answer questions. But you can answer only part of them.”

Among the top recommendations to health authorities: adopt software practices to ensure that race and other demographic data must be entered into electronic records. And then refine how to share data among counties, states, research institutions and the public.

The coalition attracted support in monthly calls with state Health Secretary Rachel Levine, recently sworn in as a four-star admiral in charge of the U.S. Public Health Service Commissioned Corps, which responds to health crises on behalf of the federal government.

“I thought what they did was critically important,” Levine said, noting that officials recognized the coalition’s research as revelatory. With “a diverse group of professionals, they were able to use and collect data in a very effective way.”

Their early research found the covid rate among Black people in Allegheny County, which encompasses Pittsburgh, was three times the rate of white people. Hospitalizations among Black people have been as high as seven times the rate of whites, according to “Missing Our Shot,” the coalition’s 2021 report.

A Vaccine Clinic Campaign Stop

Ed Gainey, a state legislator from Pittsburgh, was among the first politicians to say African Americans in his hometown were missing out on covid protections. Last month, Gainey was elected the city’s first Black mayor, after winning a primary, within months of the murder of George Floyd, that pointed to inequities in health care and policing.

A Democrat who worked for two Pittsburgh mayors, Gainey admits he and other Black elected officials were somewhat ill-equipped in the first weeks of the pandemic.

"I fought hard to get the vaccine into the community last year, but I really didn't know the language — the health language — to be able to get it," Gainey said during an interview at a pop-up vaccine clinic in the city.

Vaccinations have risen because of community efforts, he said, but children are still a source of worry. Gainey, who grew up in a low-income housing complex, said he understands when some youngsters shrug when asked about covid risks. “But I will tell you I know this: If you can make a kid believe in Santa Claus, you can make them believe in the vaccine. And you know, I understand some of the young kids’ reluctance. I didn’t grow up going to the doctor regularly either,” he said. “I came from the same kind of environment.”

As the 2019 report made clear, many of the benefits of Pittsburgh’s tech-based economy — a vaunted “ed-and-meds” renewal against the industrial decline of the 1980s — still was largely bypassing African Americans.

The first year of covid was an iterative process of trying to stay ahead of the virus. Gary-Webb, who earned a doctorate from Johns Hopkins’ public health school, said it was also a time for Black residents to be heard about what they knew and saw in their neighborhoods.

The coalition, sustained by thousands of volunteer hours, attracted some funding earlier this year, notably for outreach and to pay for running datasets. Last month, the Poise Foundation was approved for a three-year, $6.99 million grant, federal money to be administered by the state health department to support an array of health partnerships in the region and, notably, to improve covid vaccine uptake in ZIP code areas the Black Equity Coalition identified as vulnerable. Among its goals: demographic messaging, data analysis on covid testing and education outreach in dozens of counties.

Gary-Webb counts herself among a group of “boomerang” Pittsburghers who have lived other places — in her case, Baltimore, New York and Philadelphia — and covid has helped them recalibrate how Black residents can participate in public health.

As she put it: “The health planners were saying, ‘Help us get out the message.’ We said, ‘No, we are not just getting out the message. We want to be talking about equity at the same time.’”