Data Science Proved What Pittsburgh's Black Leaders Knew: Racial Disparities Compound Covid Risk

KFF Health News, December 7, 2021

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.’”

Is It Time to Change the Definition of ‘Fully Vaccinated’?

KFF Health News, December 6, 2021

The Centers for Disease Control and Prevention has recommended that everyone 18 and older get a covid booster shot, revising its narrower guidance that only people 50 and up "should" get a shot while younger adults could choose whether or not to do so.

This article was published on Friday, December 3, 2021 in Kaiser Health News.

By Victoria Knight

As more indoor venues require proof of vaccination for entrance and with winter — as well as omicron, a new covid variant — looming, scientists and public health officials are debating when it will be time to change the definition of “fully vaccinated” to include a booster shot.

It’s been more than six months since many Americans finished their vaccination course against covid; statistically, their immunity is waning.

At the same time, cases of infections with the omicron variant have been reported in at least five states, as of Friday. Omicron is distinguished by at least 50 mutations, some of which appear to be associated with increased transmissibility. The World Health Organization dubbed it a variant of concern on Nov. 26.

The Centers for Disease Control and Prevention has recommended that everyone 18 and older get a covid booster shot, revising its narrower guidance that only people 50 and up “should” get a shot while younger adults could choose whether or not to do so. Scientists assume the additional shots will offer significant protection from the new variant, though they do not know for certain how much.

Dr. Anthony Fauci, chief medical adviser to President Joe Biden, during a White House press briefing Wednesday was unequivocal in advising the public. “Get boosted now,” Fauci said, adding urgency to the current federal guidance. About a quarter of U.S. adults have received additional vaccine doses.

“The definition of ‘fully vaccinated’ has not changed. That’s, you know, after your second dose of a Pfizer or Moderna vaccine, after your single dose of a Johnson & Johnson vaccine,” said the CDC’s director, Dr. Rochelle Walensky, during Tuesday’s White House briefing on covid. “We are absolutely encouraging those who are eligible for a boost six months after those mRNA doses to get your boost. But we are not changing the definition of ‘fully vaccinated’ right now.” A booster is recommended two months after receiving the J&J shot.

But that, she noted, could change: “As that science evolves, we will look at whether we need to update our definition of ‘fully vaccinated.’”

Still, the Democratic governors of Connecticut and New Mexico are sending a different signal in their states, as are some countries — such as Israel, which arguably has been the most aggressive nation in its approach. Some scientists point out that many vaccines involve three doses over six months for robust long-term protection, such as the shot against hepatitis. So “fully vaccinated” may need to include shot No. 3 to be considered a full course.

“In my view, if you were vaccinated more than six months ago, you’re not fully vaccinated,” Connecticut Gov. Ned Lamont said Nov. 18 during a press briefing. He was encouraging everyone to get boosted at that time, even before the federal government authorized extra shots for everyone.

New Mexico Gov. Michelle Lujan Grisham had a similar response in mid-November, saying she defined “fully vaccinated” as receiving three shots of the mRNA type. She also opened up booster eligibility to all of her state residents before the CDC and Food and Drug Administration did.

What do the varying views on the evolving science mean for vaccine requirements imposed on travelers, or by schools or workplaces? And what about businesses that have required patrons to provide proof of vaccination?

Dr. Paul Offit, director of the Vaccine Education Center at the Children’s Hospital of Pennsylvania, said the CDC’s stronger recommendation for everyone to get boosted signals to him that a booster is now part of the vaccine regimen. Yet Offit, who is also a member of the FDA’s vaccine advisory committee, wrote a joint op-ed this week in which he and two other scientists argued that boosters were not yet needed for everyone and that healthy young people should wait to see whether an omicron-specific booster might be needed.

“I think when the CDC said they are recommending a third dose, they just made the statement that this is a three-dose vaccine series,” Offit told KHN. “And, frankly, I think it’s going to throw a wrench into mandates.”

Yet to be determined is whether restaurants or other places of business will look more closely at vaccine cards for the booster.

Dr. Georges Benjamin, executive director of the American Public Health Association, said it’s too early to say. “For now, businesses should stay focused on current guidelines,” he said.

Dr. Marc Siegel, an associate professor of medicine at the George Washington School of Medicine and Health Sciences, said the question of whether you are fully vaccinated with just two doses or need a booster is a question of semantics. Covid immunity level is the more important issue.

Siegel said he thinks more suitable terminology would be to call someone “appropriately” or “adequately” vaccinated against covid rather than “fully” vaccinated, since it’s possible that more boosters could be needed in the future — making “full vaccination” a moving target.

But, as with so many aspects of the pandemic, ambiguity prevails — both in federal guidance on the definition of “fully vaccinated” and in entrance policies, which vary by state, school and business.

Right now, businesses don’t appear to be checking for boosters, but that could change. So, it may be wise to first check the requirements — lest patrons present a two-shot vaccine passport, only to be turned away as inadequately protected.

Texas Toughens Ban on Medication-by-Mail Abortions With Jail Time and Hefty Fine

KFF Health News, December 6, 2021

In contrast to a surgical abortion, which usually takes place in a clinic, a medication abortion involves two pills, taken 48 hours apart, that manipulate the hormones to end a pregnancy.

This article was published on Monday, December 6, 2021 in Kaiser Health News.

By Ashley Lopez, KUT

Texas already had the most restrictive abortion laws in the U.S. — and they just got tougher. On Wednesday, a new law took effect that adds penalties of jail time and a fine of up to $10,000 for anyone who prescribes pills for medication abortions through telehealth or the mail.

Texas bans all abortions after cardiac activity can be detected in the embryo, which typically occurs about six weeks into pregnancy — often before people realize they’re pregnant. Medication abortions via telehealth or mail were already illegal in Texas, and the new criminal penalties took effect on the day the Supreme Court heard arguments in a Mississippi case that ultimately could overturn Roe v. Wade, the landmark 1973 ruling that established a constitutional right to abortion.

In contrast to a surgical abortion, which usually takes place in a clinic, a medication abortion involves two pills, taken 48 hours apart, that manipulate the hormones to end a pregnancy. Many people prefer this process early in a pregnancy because the pills can be taken at home. The Food and Drug Administration approved the drugs in 2000, and the procedure is effective up to 10 weeks into a pregnancy.

Texas is not the only state that restricts medication abortion and telehealth. This year alone, five other states have passed laws against sending abortion pills through the mail, said Elizabeth Nash, a state policy analyst with the Guttmacher Institute.

“It’s a squeeze play on abortion,” she said.

Nash said this crackdown is partially a response to the pandemic, which propelled interest in medication abortions.

“We saw the increase and, really, sort of the coming out of telehealth as part of medical practice,” she said.

Texas’ new law, known as SB 4, also narrows the legal window for medication abortion to the first seven weeks of pregnancy. State legislators passed this new law on Sept. 17 during a special session — more than two weeks after the other abortion law, often called the “six-week ban,” took effect on Sept. 1. Attempts to halt that law as groups challenge it in court have failed.

“We already have the most extreme abortion ban in the U.S. and yet our legislature made it a priority to add this additional abortion restriction,” said Sarah Wheat, chief external affairs officer with Planned Parenthood of Greater Texas.

Because of the six-week ban, the new limits on medication abortions won’t have an immediate impact. “Most people at this stage of a pregnancy are already banned from accessing abortion in Texas,” Wheat said.

But the new law could significantly affect future access to abortion.

By criminalizing the use of telehealth and mail-order prescriptions to acquire abortion pills, the state seeks to forestall a possible workaround to the shrinking number of reproductive health clinics in Texas.

Already, many Texans live hundreds of miles from the nearest clinic offering abortion services. Advocates have promoted the use of telehealth for medication abortions in places where clinics are few and far between, and some states experimented with greater telehealth flexibility — including for abortion pills — during the pandemic shutdowns.

The new law “is creating additional fear and additional stigma for people who may be seeking access to medication abortion,” Wheat said.

Anti-abortion groups in Texas hailed SB 4 as a victory — an important second step, after the six-week ban, in their efforts to curtail all access to the procedure in the state.

John Seago, legislative director for Texas Right to Life, said his group wanted to ensure that law enforcement officials could prosecute people who skirt the state’s strict limits by administering medication abortions.

“This piece is really important for this period but also moving into the future, when we see even after [Roe v. Wade] we have organizations and individuals advertising that they will mail abortion-inducing drugs,” he said.

Nash of the Guttmacher Institute said that in some states it has become easier for people to obtain medication abortions through telehealth services.

Seago said he wants to make sure that doesn’t happen in Texas.

“This is going to be a future public policy issue around abortion, no matter what happens to Roe v. Wade,” he said.

So far, no lawsuit has challenged Texas’ law restricting access to abortion pills. Mounting a legal challenge to halt the law is complicated because Texans already are effectively prohibited from all abortions after six weeks. Finding legal standing to sue would likely be difficult for any Texas plaintiff.

Ultimately, Wheat said, Texas’ latest law is a sign of what could happen elsewhere. She said it shows there is no end to efforts aimed at making abortions harder to get.

“Take note of Texas, because what you see is that our politicians, they do not quit, and they can find endless ways to add fear, intimidation and restrictions,” Wheat said.

This story is part of a partnership that includes KUT, NPR and KHN.

New California Law Eases Aid-in-Dying Process

KFF Health News, December 3, 2021

The most important part of the new law, advocates say, is the shortening of the waiting period.

This article was published on Friday, December 3, 2021 in Kaiser Health News.

By Bernard J. Wolfson

During her three-year battle with breast cancer, my wife, Leslie, graciously endured multiple rounds of horrifically toxic treatment to eke out more time with our two young children.

But after 18 cancer-free months, the disease returned with a vengeance in June 2003. It fractured her bones and invaded her spinal canal, bathing her brain in malignancy.

During the final six months, as she lay on her home hospice bed in constant pain, attached to a morphine drip around-the-clock while losing her eyesight and withering to a skeleton, the idea of ending her suffering by ending her life didn’t even enter into our conversations.

I’ve been thinking a lot about those bleak days while looking into California’s End of Life Option Act, which allows terminally ill patients with a life expectancy of less than six months to end their lives by taking medications prescribed by a physician.

In October, Gov. Gavin Newsom signed a revised version of the law, extending it to January 2031 and loosening some restrictions in the 2015 version that proponents say have become barriers to dying people who wish to avail themselves of the law.

The original law, which remains in effect until Jan. 1, contains numerous safeguards meant to ensure that patients are not being coerced by family members who view them as a burden or a potential financial bonanza.

Under the current law, patients who want to die must make two oral requests for the medications at least 15 days apart. They also must request the drugs in writing, and two doctors must agree the patients are legally eligible. After receiving the medications, patients must confirm their intention to die by signing a form 48 hours before ingesting them.

The patients must take the drugs without assistance, either by swallowing them in a drink or pushing a plunger attached to an IV or a feeding tube. And physicians can decline to prescribe the death-inducing drugs.

After the law had been in effect for a while, its proponents and practitioners concluded that some safeguards made the option unavailable to certain patients.

Some patients were so sick they died during the 15 days they were required to wait between their first and second requests for the medications. Others were too weak or disoriented to sign the final attestation.

The revised law reduces the 15-day waiting period to just two days and eliminates the final attestation.

It also requires health care facilities to post their aid-in-dying policies online. Doctors who decline to prescribe the drugs — whether on principle or because they don’t feel qualified — are obliged to document the patient’s request and transfer the record to any other doctor the patient designates.

The most important part of the new law, advocates say, is the shortening of the waiting period.

Dr. Chandana Banerjee, an assistant clinical professor specializing in palliative medicine at City of Hope National Medical Center in Duarte, California, says she’s seen many patients who were afraid to broach the subject of their own death until they were very close to the end.

“By the time they made that first request and then had to wait for those 15 days, they either became completely nondecisional or went into a coma or passed away,” Banerjee says.

Amanda Villegas, 30, of Ontario, California, became an outspoken advocate for updating the law after watching her husband, Chris, die an agonizing death from metastatic bladder cancer in 2019.

When the couple asked about the possibility of a physician-assisted death, Villegas says, staff at the Seventh-day Adventist hospital where Chris was being treated told them, inaccurately, that it was illegal. When he finally made a request for death-inducing drugs, it was too late: He died before the 15-day waiting period was up.

The new law “will open doors for people who might … experience the same roadblocks,” Villegas says. “When you are dying, the last thing you need is to go through bureaucratic barriers to access peace.”

Medical aid in dying straddles the same political fault line as abortion and has long been opposed by many religious institutions and anti-abortion groups. It has also encountered resistance from some disability rights organizations that claim it belittles the lives of those who are physically dependent on others.

“We object to the whole idea of a state providing a vehicle for people to kill themselves,” says Alexandra Snyder, CEO of the Life Legal Defense Foundation, an anti-abortion nonprofit law firm. The 15-day waiting period, she says, provided an important cooling-off period for patients to reflect on a decision that is irreversible. “Now, any safeguards that were in the law are gone.”

Proponents of the law say they haven’t seen evidence that a patient’s decision to take the life-ending medications has ever been anything other than voluntary.

Though neither version of the law requires a medical professional to be present when a patient takes the drugs, medical standards encourage professional participation in the dying process, says Dr. Lonny Shavelson, chair of the American Clinicians Academy on Medical Aid in Dying. The drugs should be kept at the pharmacy until the patient is ready to ingest them, he says — though that doesn’t always happen.

From the time the aid-in-dying law took effect in June 2016 through Dec. 31, 2020, just under two-thirds of the 2,858 people who received prescriptions actually took the medications and died, according to the most recent data from the California Department of Public Health. The rest died before they could take the drugs or found other ways to manage their pain and emotional distress.

Most major commercial health plans — including Kaiser Permanente, Anthem Blue Cross, Blue Shield of California and Health Net — cover aid-in-dying drugs and the related doctor visits, as does Medi-Cal, the government-run health insurance program for people with low incomes.

However, more than 60% of those who take the drugs are on Medicare, which does not cover them. Effective life-ending drug combinations are available for as little as $400.

If you are contemplating aid in dying, here are some resources to learn more about it:

  • Compassion & Choices, 1-800-247-7421 or www.compassionandchoices.org
  • The California Department of Public Health, www.cdph.ca.gov (click “programs”)
  • The American Clinicians Academy on Medical Aid in Dying, www.acamaid.org
  • End of Life Choices California, www.endoflifechoicesca.org or 1-760-636-8009

Talk to your doctor sooner rather than later if you are considering medically assisted death, in case you’ll need to seek a different physician’s help. If your doctor agrees to help, the law requires that he or she discuss other end-of-life options with you, including hospice and palliative care.

Whatever choice a patient makes, being more open about our mortality is important, says state Sen. Susan Eggman (D-Stockton), the author of the revised aid-in-dying law.

“We should all have more conversations about life and death and what we want and don’t want and what is a peaceful death,” she says. “We are all going to die.”

Leslie and I had plenty of those conversations, until the cancer ultimately robbed her of her mind.

In her final months, she would often sink into a semiconscious state, far out of our reach for days on end. Then, just when we thought she wasn’t coming back, she would suddenly open her eyes and ask for the children. She’d get into her wheelchair and join us at the dinner table.

Those periods, which we called “awakenings,” were a source of great comfort to everyone who loved Leslie — but especially to the kids, who were relieved and overjoyed to have their mommy back.

Though I’ll never know for sure, I suspect Leslie would not have wanted to foreclose on such moments.

A Tale of Two Medicaid Expansions: Oklahoma Jumps In, While Missouri Lags

KFF Health News, December 3, 2021

The experience of the newly eligible in those two states has differed dramatically.

This article was published on Friday, December 3, 2021 in Kaiser Health News.

By Bram Sable-Smith

Temp worker James Dickerson applied for Medicaid because it will be cheaper than his current health plan. Home health aide Sharon Coleman looks forward to having coverage that will cover a hospital stay. Incoming medical student Danielle Gaddis no longer worries a trip to the doctor will leave her in debt.

All three are among the roughly 490,000 people newly eligible for Medicaid after Oklahoma and Missouri voters in 2020 approved expanding the federal-state public health insurance program for people with low incomes. In both states, people who earn up to 138% of the federal poverty level — about $18,000 per year for an individual — can now get the free coverage even if they don’t have disabilities.

But the experience of the newly eligible in those two states — an estimated 215,000 people in Oklahoma and 275,000 in Missouri — has differed dramatically. Oklahoma has enrolled over 210,000 people, while Missouri has enrolled fewer than 20,000.

The difference comes down to the approaches taken by the two states, both of which are Republican-led and resisted expanding Medicaid for years.

Once Oklahoma voters approved the expansion, it was quickly embraced: The legislature appropriated $164 million in the state budget to fund it. Applications opened this June, one month before the program began, and within a month, 113,000 people had been approved.

In August, Oklahoma Secretary of Health and Mental Health Kevin Corbett told state lawmakers about one of those enrollees: a 62-year-old woman able to schedule appointments with a doctor and dentist for the first time in 20 years.

“Truly life-changing,” Corbett said. “We feel very good about what we’re being able to do.”

Other states that expanded Medicaid in recent years saw enrollment swell in the first month. Louisiana’s combined Medicaid and Children’s Health Insurance Program rolls grew by over 255,000; Virginia’s increased by almost 184,000; Idaho added about 45,500 enrollees, roughly half of the anticipated number of newly eligible people; and Montana added over 23,000, 51% of its expected total. Missouri, on the other hand, has enrolled only about 7% of newly eligible people in Medicaid.

“You can expand Medicaid on the books, but there are a lot of ways that you can throw up barriers to keep people from getting enrolled,” said Sidney Watson, director of the Center for Health Law Studies at Saint Louis University.

Expansion has been a slog in Missouri. The legislature refused to fund the voter-approved program, prompting Republican Gov. Mike Parson to announce in May that the state would “withdraw” its expansion plan. Then, in August, a judge ordered the state to start accepting applications, which it did. But Missouri could not begin processing them until Oct. 1.

That whiplash means many newly qualified Missourians are likely unaware they could be covered by Medicaid, according to University of Missouri-Kansas City law professor Ann Marie Marciarille.

Marciarille said that the state has a responsibility to get the word out about the program and that Missouri has done little more than what was legally required by the August court order. The critique has been echoed by others.

Heather Dolce, a spokesperson for the Missouri Department of Social Services, which oversees Medicaid, said the department had publicized the Medicaid expansion by updating its website, emailing participants in its family support programs and posting on social media. The department’s Facebook and Twitter accounts show a handful of posts about the expansion, including two tweets posted the day after the publication of a KCUR article that noted the state’s outreach efforts had been slow.

Oklahoma’s efforts, meanwhile, included outreach events, TV interviews, plus a video and social media campaign.

In Missouri, without robust advertising by the state, much of the outreach has fallen to clinics like Affinia Healthcare in St. Louis. James Dickerson saw a flyer about the Medicaid expansion on the front door of an Affinia clinic when he went to see a doctor about an ear infection.

The 59-year-old, who works various jobs through a temp agency, was eager to sign up. He had a good experience with Medicaid in 2014 when he was covered while getting spinal surgery for a workplace injury.

At Affinia, Dickerson met with a certified application counselor, Sunni Johnson, who within about five minutes got all the information she needed to send in his application. Most clinics like this have specialists who can help patients enroll in health insurance and other assistance programs.

By federal law, Missouri is required to determine whether an applicant is eligible for the program within 45 days. But Michelle Davis Reed, the lead eligibility and enrollment coordinator at Northwest Health Services, based in St. Joseph, Missouri, said in November that some applications she had filed in August were still not processed.

Dolce said the state had 32,000 Medicaid applications pending as of Nov. 17. She did not respond directly to a question about the number of staffers processing the applications but said overtime was being used.

In Oklahoma, 144,000 of the 210,000 Medicaid expansion enrollees previously lacked insurance. The remainder were enrolled when the state evaluated whether people who had applied to other benefit programs were also now eligible for Medicaid.

One Missouri program that could be a candidate for such reprocessing is Gateway to Better Health, a temporary insurance program that Sharon Coleman uses in St. Louis. Gateway covers about 16,000 residents of the city of St. Louis and St. Louis County who earn up to 100% of the federal poverty level.

Angela Brown, CEO of the St. Louis Regional Health Commission, which administers Gateway, said she believes that at least 90% of its participants would qualify for Medicaid under expansion but that bureaucratic hurdles made encouraging patients to sign up for Medicaid directly simpler than the process necessary to move them into a new system. Gateway sent a text message to Coleman and other recipients urging them to apply.

After getting the alert, Coleman, 60, who provides in-home care to older adults, went to Affinia specifically to enroll in Medicaid. She has high blood pressure, but her health is otherwise good — she said she hasn’t been to a hospital since her son was born 40 years ago. Coleman was relieved to know that if she had to go now, her bills would be covered by Medicaid. Gateway covers only primary, specialty and urgent care.

“I can go to the emergency room now and not worry about them sending me bills I can’t pay,” Coleman said after visiting with Johnson, the enrollment specialist.

In Oklahoma, 26-year-old Danielle Gaddis had been uninsured for two years. She was reluctant to see a doctor during that time, fearing the medical bills. So she was thankful to be enrolled in Oklahoma’s Medicaid program when she got sick recently. Like Dickerson and Coleman, Gaddis applied for Medicaid with the help of a specialist at a health clinic, Mary Mahoney Memorial Health Center in Oklahoma City.

“Because of covid, a cold could be the end of the world, so you freak out,” said Gaddis, who will start medical school in August after deferring for a year.

Gaddis said she’s keeping the experience of being uninsured front of mind as she begins her medical training.

“No one should ever have to worry about, ‘How long am I going to have to ride this out before I go to see what’s wrong?’” Gaddis said. “That’s how things get worse.”

As Climate Worsens, Environmentalists Grapple With the Mental Toll of Activism

KFF Health News, December 2, 2021

Environmental worries can motivate but also overwhelm people.

This article was published on Thursday, December 2, 2021 in Kaiser Health News.

By Alex Smith, KCUR

While growing up in the ’90s in Johnson County, Kansas, in a suburb of Kansas City, I had a friend, Kevin Aaron, who was a dedicated environmentalist.

To strangers, Kevin appeared to be a laid-back punk-rock music fan with a dry and slightly mischievous sense of humor, but those of us who knew him best saw his passion for sustainability blossom during high school.

In his barbecue-obsessed part of the country, he became the rare vegetarian, driven by witnessing large-scale meat production’s damage to the environment. As he grew into a young man, he eagerly researched and then adopted alternative practices — like driving a hybrid car — that he thought might reduce carbon emissions, if only by tiny measures.

In the early 2000s, Kevin was living in the Bay Area and preparing for a career in climate advocacy, enrolled in a master’s program in city and regional planning while studying for a law degree.

During his graduate studies, he became overwhelmed by a sense of hopelessness about the climate. He died by suicide in 2003, at age 27. Kevin had been living with a feeling that his efforts — combined with those of other environmental activists — just wouldn’t be enough to turn the tide on global warming. It added to the depression he was already struggling with, said his mother, Sami Aaron.

Environmental worries can motivate but also overwhelm people. Polling from September 2020 showed that more than half of adults in the U.S. were anxious about how climate change affects their mental health. And nearly 40% of surveyed Gen Z Americans, born after 1996, said addressing climate change is their top personal concern.

The loss of Kevin remains a shock for me, and for others who cared about him — especially his mother, who has become increasingly involved in environmental advocacy.

Aaron often turns to nature for comfort, and she picked a former Superfund site in Olathe, Kansas, that has been converted to a flower-filled sanctuary as the spot for us to talk about her son. She said that the more deeply Kevin became involved in environmental activism, the more his thinking about the future turned pessimistic — his mind and mood overtaken by despairing thoughts, like an invasive species.

“There was one little seed that was planted where he couldn’t then quit thinking about it,” she said.

After Kevin died, Aaron found some solace in yoga and meditation, but continued to see her grief as a private struggle — until a few years ago, when she met some environmentalists in the Flint Hills of Kansas who also struggled with mental health issues.

Aaron wanted to teach them the coping strategies she had learned after her son’s death, so she created a Kansas City-based nonprofit, the Resilient Activist. The organization’s website explains that Kevin’s death occurred “when eco-anxiety (fear about the ecology of the planet) and solastalgia (grief over loss of beloved places in nature) combined with his own inner demons and he took his own life.” The Resilient Activist offers mental health resources, community-building programs, consulting and other psychological resources for the environmental community.

“We need activists who have the resilience to see us through these difficult times,” Aaron said. “That’s what I wanted to give. It’s like, what would have helped him and others like him.”

In eastern Kansas, the college town of Lawrence is steeped in environmental activism and, on Aug. 31, dozens of protesters gathered before the start of a city meeting, chanting slogans and carrying signs: “Time Is Running Out!” As the evening rush-hour traffic roared past, activists demanded Lawrence leaders follow through on their sustainability pledges.

Many of the protesters were University of Kansas students, like undergraduate Marc Veloz. He moved to Lawrence from Texas, where he became concerned about how flooding was disproportionately affecting communities of color in Dallas. He said taking part in local activism helps get him through what he calls “dark days.”

“There are those days that I just have to lean on the little wins we’ve had to keep me going,” Veloz said. “Because I know that being in that space of despair and anger and sadness, it isn’t sustainable.”

Another student, Kai Hamilton, grew up in the Kansas farming town of Hesston. She recalled that even though her neighbors suffered droughts year after year, the words “climate change” were never said out loud.

“I have vivid memories of being alone in my room in high school and just being so overwhelmed and deeply sad about my lack of control over it and also the lack of action in the world,” Hamilton said.

Another protester, Agustina Carvallo Vazquez, came to KU from Paraguay, where she said she witnessed destructive and exploitative agricultural practices. She planned to study economics and music but started focusing on environmental activism after she grew frustrated by the inaction she found in the United States.

Some amount of anxiety is a natural response to climate change, said Susan Clayton, a professor of psychology at the College of Wooster and a board member of the American Psychological Association. She said getting involved in activism or environmental groups can help relieve feelings of helplessness, but, paradoxically, advocacy carries the risk added stress — sometimes leading to a diagnosis of mental illness.

Clayton said that anxiety crosses the line to becoming a true concern when it causes activists to turn away or give up on the problem.

“We have to find that common ground, where we can accept that there are some really serious things going on, but it doesn’t lead us to despair,” Clayton said.

For decades, though, many environmentalists resisted prioritizing their own mental health.

In 2018, Greenpeace International signaled a shift when it launched a major study on why so many of its activists were working themselves past their healthy limits. Agustin Maggio, a campaign manager for Greenpeace, explains that many local volunteers and leaders had bought into a kind of “martyr culture.”

“Burning yourself out is almost like a badge of honor,” Maggio said.

Greenpeace and other leading environmental groups, including the Sierra Club, have begun urging volunteers and staff members to take breaks, unplug or even limit the scope of their activism for the sake of mental health.

Ward Lyles, an associate professor of urban planning at the University of Kansas and an environmental activist since the ’90s, said he has changed the way he talks with students about the climate.

“When I first started, I thought it was my job to scare people into action,” Lyles said.

Now, Lyles said, he recognizes that students enter his classes already terrified about what’s happening to the planet — and desperate to do something about it. In class, Lyles welcomes discussions about environmental anxiety and grief, so that emerging activists understand they are not alone in having those feelings.

“In classes where you acknowledge this is hard — this is hard work to do, but we’re here to support each other — then it’s really amazing to watch students come together and talk about finding solutions,” Lyles said.

During the pandemic, Sami Aaron has been leading yoga and meditations to help activists relax and reduce narrow, negative thinking patterns that feed anxiety and depression. Reaching a sustainable future, Aaron explained, will require people to remain optimistic and open to new possibilities.

The goal is “to kind of shift you out of that fight-or-flight mode,” she said. “So that now you’re in a place where you have all different ways of thinking. You have all other options for what can happen and what you can do.”

This story is from a partnership that includes NPR, KCUR and KHN.

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Conservative Justices Seem Poised to Overturn Roe’s Abortion Rights

KFF Health News, December 2, 2021

 It appears possible — even likely — that a majority of the Supreme Court could vote to turn the thorny question of whether to allow abortion and under what circumstances back to individual states.

This article was published on Thursday, December 2, 2021 in Kaiser Health News.

By Julie Rovner

A newly conservative Supreme Court on Wednesday heard the most serious legal challenge in a generation to a woman’s right to obtain an abortion. And judging from the questions asked by the justices, it appeared possible — even likely — that a majority of them could vote to turn the thorny question of whether to allow abortion and under what circumstances back to individual states.

The law under review in Dobbs v. Jackson Women’s Health Organization, passed by Mississippi in 2018, would ban most abortions after 15 weeks of pregnancy. That is a direct contravention of Supreme Court precedents set in 1973’s Roe v. Wade and 1992’s Planned Parenthood of Southeastern Pennsylvania v. Casey, which say states cannot ban abortion until fetal “viability” — generally considered to occur at about 22 to 24 weeks.

In recent years, the high court has been asked to decide not whether states can ban the procedure entirely but whether state regulations prior to viability represent an “undue burden” on a patient seeking an abortion. In 2007, for example, in Gonzales v. Carhart, the court ruled that Congress could ban a specific abortion method, dubbed “partial-birth abortion.” But in 2016, the court also ruled in Whole Woman’s Health v. Hellerstedt that Texas went too far in requiring abortion clinics to meet health standards equivalent to those for outpatient surgical facilities and requiring doctors who perform abortions to hold hospital admitting privileges.

Not since 1992 has the court squarely faced the question of whether to retain Roe and Casey’s central holding: that there is a constitutional right to abortion prior to viability. But in accepting the Mississippi case for argument last spring, the court specifically said it intended to address the question of “whether all pre-viability prohibitions on elective abortion are unconstitutional.”

Mississippi Solicitor General Scott Stewart, however, did not spend his time before the justices trying to persuade the court merely to uphold his state’s ban while leaving the broader right to abortion intact. Rather, he argued for overturning both Roe and Casey. Roe, he said, “is an egregiously wrong decision that has inflicted tremendous wrong on our country and will continue to do so … unless and until this court overrules it.”

One can never really tell what the justices will do from the oral arguments, but Stewart’s comments seemed to gain sympathy from the six conservative justices. “Why should this court be the arbiter rather than Congress, state legislatures and the people,” asked Justice Brett Kavanaugh. “Why is that not the right answer?”

Those on the other side argued back. “For a state to take control of a woman’s body … is a fundamental deprivation of her liberty,” said Julie Rikelman of the Center for Reproductive Rights, the lead attorney for the last remaining abortion clinic in Mississippi.

Rikelman was buttressed by U.S. Solicitor General Elizabeth Prelogar, who told the justices that overruling Roe and Casey “would be an unprecedented contraction of individual rights.”

The conservative justices also trained many questions on the issue of why viability of the fetus is a proper standard for setting a limit on abortions.

Mississippi’s Stewart argued that viability “is not tethered to anything in the Constitution. It’s a quintessentially political line.”

Justice Sonia Sotomayor, however, was quick to respond. “How is your interest anything other than a religious view?” she asked Stewart. “The issue of when life begins has been debated since the beginning of time.”

And Prelogar specifically declined to set a cutoff date for states to ban abortion other than viability. “I don’t think there’s any line that could be more principled than viability,” she told Justice Neil Gorsuch.

Still, court watchers say the mere act of accepting the case suggests that the conservative supermajority of justices intends to overrule or at least change Roe in a major way.

“For the Supreme Court to take this case and presumably uphold the law, the justices will either have to say Mississippi is within its rights to do this because there’s no right to choose abortion at all or because viability as a dividing line doesn’t make sense,” said Mary Ziegler, a Florida State University law professor, in the Nov. 23 episode of KHN’s “What the Health?” podcast. “So that means, in essence, the court is either going to have to overrule Roe entirely or transform what Roe means in order to side with Mississippi. And either of those things would be a huge deal.”

In fact, should Roe be overturned, more than half the states are likely to ban abortion almost immediately, according to the Guttmacher Institute, an abortion-rights research group. Nine states have bans still on the books from when Roe was decided; a dozen states have “trigger” laws that would ban abortion if Roe falls; and several other states have various other bans that have passed but are not in force due to Roe’s existence.

That’s exactly what anti-abortion forces seem to be hoping for. “Mississippi’s law, if upheld, brings us much closer to where we ought to be,” said Marjorie Dannenfelser, president of the Susan B. Anthony List, which funds anti-abortion candidates for public office. “This is America’s chance to step back from the brink of madness after all these long years. To turn the page on Roe’s onerous chapter and begin a more humane era — one where every child and every mother is safe under the mantle of law.”

The arguments Wednesday came just a month after the court took up arguments in two cases involving a Texas law, known as SB 8, that bans abortion after fetal cardiac activity can be detected, at about six weeks into pregnancy. Those arguments, however, focused not on the question of whether the Texas ban is unconstitutional, but on whether either the abortion providers or the federal government can challenge it in court.

The arguments last month focused on an unusual mechanism designed to prevent federal courts from blocking the law. State officials have no role in ensuring that the ban is obeyed; rather, the law leaves enforcement to the public, by authorizing civil lawsuits against not just anyone who performs an abortion, but anyone who “aids and abets” the performance of an abortion, which could include those who drive patients to an abortion clinic or counsel them. People who bring those suits and win would be guaranteed damages of at least $10,000.

A decision in the Mississippi case is not expected until summer. The Texas decision, however, could come anytime because the law is currently in effect.

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.

Hospitals Refused to Give Patients Ivermectin. Lockdowns and Political Pressure Followed.

KFF Health News, December 2, 2021

Recent conflicts have underlined the pressure on health care workers to provide unauthorized covid treatments, particularly in parts of the country where vaccination rates are low, government skepticism is high, and conservative leaders have championed the treatments.

This article was published on Thursday, December 2, 2021 in Kaiser Health News.

By Matt Volz

HELENA, Mont. — One Montana hospital went into lockdown and called police after a woman threatened violence because her relative was denied her request to be treated with ivermectin.

Officials of another Montana hospital accused public officials of threatening and harassing their health care workers for refusing to treat a politically connected covid-19 patient with that antiparasitic drug or hydroxychloroquine, another drug unauthorized by the Food and Drug Administration to treat covid.

And in neighboring Idaho, a medical resident said police had to be called to a hospital after a covid patient’s relative verbally abused her and threatened physical violence because she would not prescribe ivermectin or hydroxychloroquine, “drugs that are not beneficial in the treatment of covid-19,” she wrote.

These three conflicts, which occurred from September to November, underline the pressure on health care workers to provide unauthorized covid treatments, particularly in parts of the country where vaccination rates are low, government skepticism is high, and conservative leaders have championed the treatments.

“You’re going to have this from time to time, but it’s not the norm,” said Rich Rasmussen, president and CEO of the Montana Hospital Association. “The vast majority of patients are completely compliant and have good, robust conversations with their medical care team. But you’re going to have these outliers.”

Even before the pandemic, the health care and social assistance industry — which includes residential care facilities and child day care, among other services — led all U.S. industries in nonfatal workplace violence, according to the Bureau of Labor Statistics. Covid has made the problem worse, leading to hospital security upgrades, staff training and calls for increased federal regulation.

Ivermectin and other unauthorized covid treatments have become a major source of dispute in recent months. Lawsuits over hospitals’ refusals to provide ivermectin to patients have been filed in Texas, Florida, Illinois and elsewhere. The ivermectin harassment extends beyond U.S. borders to providers and public health officials worldwide, in such countries as Australia, Brazil and the United Kingdom. Even so, reports of threats of violence and harassment like those recently seen in the Northern Rocky Mountains region have been relatively rare.

Ivermectin is approved to treat parasites in animals, and low doses of the drug are approved to treat worms, head lice and certain skin conditions in humans. But the FDA has not authorized the drug to treat covid. The agency says that clinical trials are ongoing but that the current data does not show it is an effective covid treatment and taking higher-than-approved levels can lead to overdose.

Likewise, hydroxychloroquine can cause serious health problems and the drug does not help speed recovery or decrease the chance of dying of covid, according to the FDA.

In Missoula, Montana, the Community Medical Center was placed on lockdown and police were called on Nov. 17 after a woman reportedly threatened violence over how her relative was being treated, according to a Police Department statement. Nobody was arrested.

“The family member was upset the patient was not treated with ivermectin,” Lt. Eddie McLean said Tuesday.

Hospital spokesperson Megan Condra confirmed on Wednesday that the patient’s relative demanded ivermectin, but she said the patient was not there for covid, though she declined to disclose the patient’s medical issue. The main entrance of the hospital was locked to control who entered the building, Condra added, but the hospital’s formal lockdown procedures were not implemented.

The scare was reminiscent of one that happened in Idaho in September. Dr. Ashley Carvalho, who is completing her medical residency training in Boise, wrote in an op-ed in the Idaho Capital Sun that she was verbally abused and threatened with both physical violence and a lawsuit by a patient’s relative after she refused to prescribe ivermectin or hydroxychloroquine.

“My patient was struggling to breathe, but the family refused to allow me to provide care,” Carvalho wrote. “A call to the police was the only solution.”

An 82-year-old woman who was active in Montana Republican politics was admitted to St. Peter’s Health, the hospital in Helena, with covid in October. According to a November report by a special counsel appointed by state lawmakers, a family friend contacted Chief Deputy Attorney General Kris Hansen, a former Republican state senator, with multiple complaints: Hospital officials had not delivered a power-of-attorney document left by relatives for the patient to sign, she was denied her preferred medical treatment, she was cut off from her family, and the family worried hospital officials might prevent her from leaving. The patient later died.

That complaint led to the involvement of Republican Attorney General Austin Knudsen, who texted a lobbyist for the Montana Hospital Association who is also on St. Peter’s board of directors. An image of the exchange was included in the report.

“I’m about to send law enforcement in and file unlawful restraint charges,” Knudsen wrote to Mark Taylor, who responded that he would make inquiries.

“This has been going on since yesterday and I was hoping the hospital would do the right thing. But my patience is wearing thin,” the attorney general added.

A Montana Highway Patrol trooper was sent to the hospital to take the statement of the patient’s family members. Hansen also participated in a conference call with multiple health care providers in which she talked about the “legal ramifications” of withholding documents and the patient’s preferred treatment, which included ivermectin and hydroxychloroquine.

Public Service Commissioner Jennifer Fielder, a former Republican state senator, left a three-minute voicemail on a hospital line saying the patient’s friends in the Senate would not be too happy to learn of the care St. Peter’s was providing, according to the special counsel’s report.

Fielder and the patient’s daughter also cited a “right to try” law that Montana legislators passed in 2015 that allows terminally ill patients to seek experimental treatments. But a legal analysis written for the Montana Medical Association says that while the law does not require a provider to prescribe a particular medication if a patient demands it, it could give a provider legal immunity if the provider decides to prescribe the treatment, according to the Montana State News Bureau.

The report did not offer any conclusions or allegations of wrongdoing.

Hospital officials said before and after the report’s release that their health care providers were threatened and harassed when they refused to administer certain treatments for covid.

“We stand by our assertion that the involvement of public officials in clinical care is inappropriate; that individuals leveraged their official positions in an attempt to influence clinical care; and that some of the exchanges that took place were threatening or harassing,” spokesperson Katie Gallagher said in a statement.

“Further, we reviewed all medical and legal records related to this patient’s care and verified that our teams provided care in accordance with clinical best practice, hospital policy and patient rights,” Gallagher added.

The attorney general’s office did not respond to a request for comment but told the Montana Free Press in a statement that nobody at the state agency threatened anyone.

Rasmussen, the head of the Montana Hospital Association, said St. Peter’s officials have not reached out to the group for assistance. He downplayed the attorney general’s intervention in Helena, saying it often happens that people who know medical leaders or trustees will advocate on behalf of a relative or friend.

“Is this situation different? Certainly, because it’s from the attorney general,” Rasmussen said. “But I think the AG was responding to a constituent. Others would reach out to whoever they know on the hospital board.”

He added that hospitals have procedures in place that allow family members of patients to take their complaints to a supervisor or other hospital leader without resorting to threats.

Hospitals in the region that have watched the allegations of threats and harassment unfold declined to comment on their procedures to handle such conflicts.

“We respect the independent medical judgment of our providers who practice medicine consistent with approved, authorized treatment and recognized clinical standards,” said Bozeman Health spokesperson Lauren Brendel.

Tanner Gooch, a spokesperson for SCL Health Montana, which operates hospitals in Billings, Butte and Miles City, said SCL does not endorse ivermectin or other covid treatments that haven’t been approved by the FDA but doesn’t ban them, either.

“Ultimately, the treatment decisions are at the discretion of the provider,” Gooch said. “To our knowledge, no covid-19 patients have been treated with ivermectin at our hospitals.”

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No Extra Resources for Children Orphaned by Covid

KFF Health News, December 1, 2021

No concerted government effort exists to help the estimated 140,000 children who have lost a parent to COVID-19.

This article was published on Wednesday, December 1, 2021 in Kaiser Health News.

By Sarah Varney and Jason Kane, PBS NewsHour

The number of U.S. deaths from covid-19 has surpassed 778,000. Left behind are tens of thousands of children — some orphaned — after their parents or a grandparent who cared for them died. In this report, co-produced with PBS NewsHour, KHN correspondent Sarah Varney looks at the risks these grieving children face to their well-being, both in the short and long term. No concerted government effort exists to help the estimated 140,000 children who have lost a parent — or even to identify them.

Betty Hamilton of Eastman, Georgia, took in her five grandsons, ages 4 to 10, after their father died suddenly of covid in August. They had already lost their mom in a car crash years ago. With no financial help from the government, except food stamps and Medicaid, she struggles to provide the basics: keeping them fed and clothed as they grow.

But for these kids and countless others, the unaddressed emotional needs seem the greatest risk. Stressful events can be “biologically embedded,” says one expert, and their unresolved grief and depression can haunt them for life, leaving them economically disadvantaged.

For Older Adults, Smelling the Roses May Be More Difficult

KFF Health News, December 1, 2021

The complex workings of the olfactory system have not been mapped in detail yet, and much remains unknown.

This article was published on Wednesday, December 1, 2021 in Kaiser Health News.

By Judith Graham

The reports from covid-19 patients are disconcerting. Only a few hours before, they were enjoying a cup of pungent coffee or the fragrance of flowers in a garden. Then, as if a switch had been flipped, those smells disappeared.

Young and old alike are affected — more than 80% to 90% of those diagnosed with the virus, according to some estimates. While most people recover in a few months, 16% take half a year or longer to do so, research has found. According to new estimates, up to 1.6 million Americans have chronic smell problems due to covid.

Seniors are especially vulnerable, experts suggest. “We know that many older adults have a compromised sense of smell to begin with. Add to that the insult of covid, and it made these problems worse,” said Dr. Jayant Pinto, a professor of surgery and specialist in sinus and nasal diseases at the University of Chicago Medical Center.

Recent data highlights the interaction between covid, advanced age and loss of smell. When Italian researchers evaluated 101 patients who’d been hospitalized for mild to moderate covid, 50 showed objective signs of smell impairment six months later. Those 65 or older were nearly twice as likely to be impaired; those 75 or older were more than 2½ times as likely.

Most people aren’t aware of the extent to which smell can be diminished in later life. More than half of 65- to 80-year-olds have some degree of smell loss, or olfactory dysfunction, as it’s known in the scientific literature. That rises to as high as 80% for those even older. People affected often report concerns about safety, less enjoyment eating and an impaired quality of life.

But because the ability to detect, identify and discriminate among odors declines gradually, most older adults — up to 75% of those with some degree of smell loss — don’t realize they’re affected.

A host of factors are believed to contribute to age-related smell loss, including a reduction in the number of olfactory sensory neurons in the nose, which are essential for detecting odors; changes in stem cells that replenish these neurons every few months; atrophy of the processing center for smell in the brain, called the olfactory bulb; and the shrinkage of brain centers closely connected with the olfactory bulb, such as the hippocampus, a region central to learning and memory.

Also, environmental toxic substances such as air pollution play a part, research shows. “Olfactory neurons in your nose are basically little pieces of your brain hanging out in the outside world,” and exposure to them over time damages those neurons and the tissues that support them, explained Pamela Dalton, a principal investigator at the Monell Chemical Senses Center, a smell and taste research institute in Philadelphia.

Still, the complex workings of the olfactory system have not been mapped in detail yet, and much remains unknown, said Dr. Sandeep Robert Datta, a professor of neurobiology at Harvard Medical School.

“We tend to think of our sense of smell as primarily aesthetic,” he said. “What’s very clear is that it’s far more important. The olfactory system plays a key role in maintaining our emotional well-being and connecting us with the world.”

Datta experienced this after having a bone marrow transplant followed by chemotherapy years ago. Unable to smell or taste food, he said, he felt “very disoriented” in his environment.

Common consequences of smell loss include a loss of appetite (without smell, taste is deeply compromised), difficulty monitoring personal hygiene, depression and an inability to detect noxious fumes. In older adults, this can lead to weight loss, malnutrition, frailty, inadequate personal care, and accidents caused by gas leaks or fires.

Jerome Pisano, 75, of Bloomington, Illinois, has been living with smell loss for five years. Repeated tests and consultations with physicians haven’t pinpointed a reason for this ailment, and sometimes he feels “hopeless,” Pisano admitted.

Before he became smell-impaired, Pisano was certified as a wine specialist. He has an 800-bottle wine cellar. “I can’t appreciate that as much as I’d like. I miss the smell of cut grass. Flowers. My wife’s cooking,” he said. “It certainly does decrease my quality of life.”

Smell loss is also associated in various research studies with a higher risk of death for older adults. One study, authored by Pinto and colleagues, found that older adults with olfactory dysfunction were nearly three times as likely to die over a period of five years as seniors whose sense of smell remained intact.

“Our sense of smell signals how our nervous system is doing and how well our brain is doing overall,” Pinto said. According to a review published earlier this year, 90% of people with early-stage Parkinson’s disease and more than 80% of people with Alzheimer’s disease have olfactory dysfunction — a symptom that can precede other symptoms by many years.

There is no treatment for smell loss associated with neurological illness or head trauma, but if someone has persistent sinus problems or allergies that cause congestion, an over-the-counter antihistamine or nasal steroid spray can help. Usually, smell returns in a few weeks.

For smell loss following a viral infection, the picture is less clear. It’s not known, yet, which viruses are associated with olfactory dysfunction, why they damage smell and what trajectory recovery takes. Covid may help shine a light on this since it has inspired a wave of research on olfaction loss around the world.

“What characteristics make people more vulnerable to a persistent loss of smell after a virus? We don’t know that, but I think we will because that research is underway and we’ve never had a cohort [of people with smell loss] this large to study,” said Dalton, of the Monell center.

Some experts recommend smell training, noting evidence of efficacy and no indication of harm. This involves sniffing four distinct scents (often eucalyptus, lemon, rose and cloves) twice a day for 30 seconds each, usually for four weeks. Sometimes the practice is combined with pictures of the items being smelled, a form of visual reinforcement.

The theory is that “practice, practice, practice” will stimulate the olfactory system, said Charles Greer, a professor of neurosurgery and neuroscience at Yale School of Medicine. Although scientific support isn’t well established, he said, he often recommends that people who think their smell is declining “get a shelf full of spices and smell them on a regular basis.”

Richard Doty, director of the University of Pennsylvania’s Smell and Taste Center, remains skeptical. He’s writing a review of smell training and notes that 20% to 30% of people with viral infections and smell loss recover in a relatively short time, whether or not they pursue this therapy.

“The main thing we recommend is avoid polluted environments and get your full complement of vitamins,” since several vitamins play an important role in maintaining the olfactory system, he said.

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