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HHS Secretary Becerra Declares Public Health Emergency for Florida in Response to Hurricane Ian

HHS Gov News - September 26, 2022
U.S. Department of Health and Human Services Secretary Xavier Becerra declared a Public Health Emergency for the state of Florida in Response to Hurricane Ian.

Biden-Harris Administration Makes More Medicare Nursing Home Ownership Data Publicly Available, Improving Identification of Multiple Facilities Under Common Ownership

HHS Gov News - September 26, 2022
HHS has made additional data publicly available that provide more information about the ownership of all Medicare-certified nursing homes.

HHS Announces Initiative to Help Uninsured and Underinsured Americans Access COVID-19 Monoclonal Antibody Treatment

HHS Gov News - September 23, 2022
HHS announced a new effort to help uninsured and underinsured Americans access the COVID-19 monoclonal antibody treatment bebtelovimab.

HHS Announces Health Resources and Services Administration-Funded Health Centers Partnering With National Cancer Institute-Designated Cancer Centers to Improve Equity in Cancer Screening

HHS Gov News - September 23, 2022
Today, Health Resources and Services Administration awarded over $5 million to community health centers to facilitate access to life-saving cancer screenings.

In Jackson, the Water Is Back, but the Crisis Remains

Kaiser Health News:States - September 23, 2022

JACKSON, Miss. — In mid-September, Howard Sanders bumped down pothole-ridden streets in a white Cadillac weighed down with water bottles on his way to a home in Ward 3, a neglected neighborhood that he called “a war zone.”

Sanders, director of marketing and outreach for Central Mississippi Health Services, was then greeted at the door by Johnnie Jones. Since Jones’ hip surgery about a month ago, the 74-year-old had used a walker to get around and hadn’t been able to get to any of the city’s water distribution sites.

Jackson’s routine water woes became so dire in late August that President Joe Biden declared a state of emergency: Flooding and water treatment facility problems had shut down the majority-Black city’s water supply. Although water pressure returned and a boil-water advisory was lifted in mid-September, the problems aren’t over.

Bottled water is still a way of life. The city’s roughly 150,000 residents must stay alert — making sure they don’t rinse their toothbrushes with tap water, keeping their mouths closed while they shower, rethinking cooking plans, or budgeting for gas so they can drive around looking for water. Many residents purchase bottled water on top of paying water bills, meaning less money for everything else. For Jackson’s poorest and oldest residents, who can’t leave their homes or lift water cases, avoiding dubious water becomes just that much harder.

“We are shellshocked, we’re traumatized,” Sanders said.

Jackson’s water woes are a manifestation of a deeper health crisis in Mississippi, whose residents have pervasive chronic diseases. It is the state with the lowest life expectancy and the highest rate of infant mortality.

“The water is a window into that neglect that many people have experienced for much of their lives,” said Richard Mizelle Jr., a historian of medicine at the University of Houston. “Using bottled water for the rest of your life is not sustainable.”

But in Jackson an alternative doesn’t exist, said Dr. Robert Smith. He founded Central Mississippi Health Services in 1963 as an outgrowth of his work on civil rights, and the organization now operates four free clinics in the Jackson area. He often sees patients with multiple health conditions such as diabetes, hypertension, or heart problems. And unsafe water could lead to death for people who do their dialysis at home, immunocompromised individuals, or babies who drink formula, said Smith.

Residents filed a lawsuit this month against the city and private engineering firms responsible for the city’s water system, claiming they had experienced a host of health problems — dehydration, malnutrition, lead poisoning, E. coli exposure, hair loss, skin rashes, and digestive issues — as a result of contaminated water. The lawsuit alleges that Jackson’s water has elevated lead levels, a finding confirmed by the Mississippi State Department of Health.

While Jackson’s current water situation is extreme, many communities of color, low-income communities, and those with a large share of non-native English speakers also have unsafe water, said Erik Olson, senior strategic director for health and food at the Natural Resources Defense Council. These communities are more frequently subjected to Safe Drinking Water Act violations, according to a study by the nonprofit advocacy group. And it takes longer for those communities to come back into compliance with the law, Olson said.

The federal infrastructure bill passed last year includes $50 billion to improve the country’s drinking water and wastewater systems. Although Mississippi is set to receive $429 million of that funding over five years, Jackson must wait — and fight — for its share.

And communities often spend years with lingering illness and trauma. Five years after the start of the water crisis in Flint, Michigan, about 20% of the city’s adult residents had clinical depression, and nearly a quarter had post-traumatic stress disorder, according to a recent paper published in JAMA.

Jones, like many locals, hasn’t trusted Jackson’s water in decades. That distrust — and the constant vigilance, extra expenses, and hassle — add a layer of psychological strain.

“It is very stressful,” Jones said.

For the city’s poorest communities, the water crisis sits on top of existing stressors, including crime and unstable housing, said Dr. Obie McNair, chief operating officer of Central Mississippi Health Services. “It’s additive.”

Over time, that effort and adjustment take a toll, said Mauda Monger, chief operating officer at My Brother’s Keeper, a community health equity nonprofit in Jackson. Chronic stress and the inability to access care can exacerbate chronic illnesses and lead to preterm births, all of which are prevalent in Jackson. “Bad health outcomes don’t happen in a short period of time,” she said.

For Jackson’s health clinics, the water crisis has reshaped their role. To prevent health complications that can come from drinking or bathing in dirty water, they have been supplying the city’s most needy with clean water.

“We want to be a part of the solution,” McNair said.

Community health centers in the state have a long history of filling gaps in services for Mississippi’s poorest residents, said Terrence Shirley, CEO of the Community Health Center Association of Mississippi. “Back in the day, there were times when community health centers would actually go out and dig wells for their patients.”

Central Mississippi Health Services had been holding water giveaways for residents about two times a month since February 2021, when a winter storm left Jackson without water for weeks.

But in August, things got so bad again that Sanders implored listeners of a local radio show to call the center if they couldn’t get water. Many Jackson residents can’t make it to the city’s distribution sites because of work schedules, lack of transportation, or a physical impairment.

“Now, all of a sudden, I am the water man,” Sanders said.

Thelma Kinney Cornelius, 72, first heard about Sanders’ water deliveries from his radio appearances. She hasn’t been able to drive since her treatment for intestinal cancer in 2021. She rarely cooks these days. But she made an exception a few Sundays ago, going through a case of bottled water to make a pot of rice and peas.

“It’s a lot of adjustment trying to get into that routine,” said Cornelius. “It’s hard.”

The day that Jackson’s boil-water advisory was lifted, Sanders was diagnosed with a hernia, probably from lifting heavy water cases, he said. Still, the following day, Sanders drove around the Virden Addition neighborhood with other volunteers, knocking on people’s doors and asking whether they needed water.

He said he has no plans to stop water deliveries as Jackson residents continue to deal with the long-term fallout from the summer’s crisis. Residents are still worried about lead or other harmful contaminants lurking in the water.

“It’s like a little Third World country over here,” Sanders said. “In all honesty, we will probably be on this for the next year.”

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.

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Shattered Dreams and Bills in the Millions: Losing a Baby in America

Kaiser Health News:Medicaid - September 23, 2022

The day after his 8-month-old baby died, Kingsley Raspe opened the mail and found he had been sent to collections for her care.

That notice involved a paltry sum, $26.50 — absurd really, given he’d previously been told he owed $2.5 million for treatment of his newborn’s congenital heart defect and other disorders.

Raspe and his wife, Maddie, had endured watching doctors crack open the chest of their pigtailed daughter, Sterling, whom they called “sweet Sterly gurl.” The health team performed so many other procedures. But it couldn’t keep her — or her parents’ dreams for her — alive.

The bills lived on for them, as they do for many other families of premature and very sick infants who don’t survive.

“What a lasting tribute to the entire experience,” Kingsley said angrily. “The process was just so heartless.”

More than 300,000 U.S. families have infants who require advanced medical attention in newborn intensive care units every year. Some babies stay for months, quickly generating astronomical fees for highly specialized surgeries and round-the-clock care. The services are delivered, and in U.S. health care, billing follows. But for the smaller fraction of families whose children die, the burden can be too much to bear.

A patchwork of convoluted Medicaid-qualification rules seek to defray these kinds of bills for very sick children. But policies differ in each state, and many parents — especially those, like the Raspes, who have commercial insurance — don’t know to apply or think they won’t qualify.

Also, because many crises that befall premature or very sick babies are in-the-moment emergencies, there may not be time for the preapprovals that insurers often require for expensive interventions. That leaves parents in crisis — or in mourning — tasked with fighting with insurers to have treatment covered.

Three families detailed for KHN how medical bills compounded their suffering during a time when they were just trying to process their loss.

Bennett Markow

As the hospital in Reno, Nevada, was converting a parking garage into a covid-19 unit in November 2020, Bennett Markow came into the world four months early. He weighed less than a pound. His care team loved to sing “Bennie and the Jets” to him as a nod to the jet ventilator keeping his tiny lungs working.

On Jan. 20, 2021, when Bennett was 2 months old, his parents were told he needed to go to UC Davis Children’s Hospital in Sacramento, California, for specialized care that could keep him from going blind. The transfer team would be there in an hour. And the Nevada care team said that because it was an emergency, the family needn’t worry about their insurance or the method of transportation.

Bennett’s eye problem ended up being less severe than the doctors had feared. And Crissa Markow and her husband, A.J., were billed for the plane ride from REACH Air Medical Services, which turned out to be out of network. Jason Sorrick, vice president of government relations for REACH’s parent company, Global Medical Response, said the ride happened during a “lapse” in Bennett’s Medicaid coverage.

The Markows said there was no lapse. They hadn’t applied yet because they thought they wouldn’t qualify — the family is middle-class, and Bennett was on Crissa’s insurance. They did not know they should until a social worker at UC Davis gave them more information — after the flight.

Crissa Markow said her heart dropped to her toes when she realized she was being billed over $71,000, more than she makes in a year as a social worker. (The No Surprises Act, which aims to eliminate surprise billing, could have prevented some of the family’s headaches — but Bennett was born before it went into effect this year.)

Although Crissa was used to working toward solutions, the billing quagmires she found herself in while juggling Bennett’s care, her job, her other son, and the travel logistics to stay with Bennett about 2½ hours away from her home were overwhelming. Crissa estimates she spent six to eight hours a week dealing with medical bills to keep them from being sent to collections — which still happened.

Bennett died last July after doctors said his lungs could not fight anymore. The Markows spent their bereavement leave battling with insurers and other billing agencies.

Finally, Crissa called REACH, the air transport company, and said: “Look, my son died. I just want to be able to grieve, I want to focus on that. Dealing with this bill is traumatic. It’s a reminder every day I shouldn’t have to be fighting this.”

By October, the Markows had settled the bill with REACH on the condition that they not disclose the terms. Sorrick said that the company reaches agreements based on the financial and personal situations of each patient and their family and that the company’s patient advocates had talked to Crissa Markow 17 times.

“If every settlement amount was disclosed publicly, then those rates become the expectation of all patients and insurance providers,” Sorrick said. “Ultimately, that would lead to all patients wanting to pay below cost, making our services unsustainable.”

Crissa Markow’s employer-provided insurance paid $6.5 million for Bennett’s care, not including what was covered by Medicaid. The Markows paid roughly $6,500 out-of-pocket to hospitals and doctors on top of their REACH settlement. But it was not those amounts — which the couple would have happily paid to save their son — but the endless harassment and the hours spent on the phone that haunt them.

“I just wanted to be with Bennett; that’s all I wanted to do,” Crissa Markow said. “And I just spent hours on these phone calls.”

Jack Shickel

Jack Shickel was born with stunning silver hair and hypoplastic left heart syndrome. Even though he was surrounded by wires and tubes, the nurses at UVA Children’s Hospital would whisper to Jessica and her husband, Isaac, that they had a truly “cute” baby.

But his congenital disorder meant the left side of his heart never fully developed. Each year in the U.S., over a thousand babies are born with the syndrome.

After two surgeries, Jack’s heart could not pump enough blood on its own. He made it 35 days.

Weeks after his death, when the Shickels were trying to muddle through life without him in Harrisonburg, Virginia, they called the hospital billing department about two confusing bills. They were then told the full cost of his care was $3.4 million.

“I laughed and then cried,” Jessica said. “He was worth every penny to us, but that’s basically $100,000 a day.”

Bills from out-of-network labs and other prior approval notifications continued to overwhelm their mailbox. Eventually, they figured out how to get Medicaid. The Shickels ended up paying only $470.26.

Jessica got the final bills in March, seven months after Jack’s death.

She noted that all of this was happening as the University of Virginia Health System said it was rolling back its aggressive billing practices after a KHN investigation found the prestigious university hospital was putting liens on people’s homes to recoup medical debt.

UVA Health spokesperson Eric Swensen expressed condolences to the Shickel family and added that the health system works to help patients navigate the “complex process” of evaluating financial assistance, including Medicaid coverage.

After KHN reached out for comment, the Shickels got a call from UVA saying that the hospital was refunding their payment.

The hospital care team had given the family a pamphlet about what to do when grieving, but a more useful one, Jessica said, would have been titled “How Do You Deal With Medical Bills After Your Child Has Died?”

Sterling Raspe

Kingsley Raspe likes to say Sterling was “one special little lady” — not only did she have the same congenital heart defect as Jack Shickel, but she was also diagnosed with Kabuki syndrome, a rare disorder that can severely affect development. Sterling also had hearing loss, spinal cord issues, and a compromised immune system.

An explanation of benefits from the Raspes’ commercial insurance indicated the couple would need to pay $2.5 million for Sterling’s care — an amount so large the numbers didn’t all fit in the column. Even Kingsley’s suspicion that the $2.5 million charge was likely erroneous — in large part or in whole — didn’t erase the sheer panic he felt when he saw the number.

A computer programmer making $90,000 a year, Kingsley had decent insurance. He frantically Googled “medical bankruptcy.”

Sterling had been denied Medicaid, which is available to children with complex medical problems in some states. Kingsley had filed an application for the government insurance, which had to be submitted by mail from the family home in Gary, Indiana. In doing so, he broke the strict protocols on covid exposure set early in the pandemic at the Ronald McDonald charity house near the Illinois hospital where Sterling was being treated and jeopardized his ability to stay there.

In rejecting the application, Indiana cited an income threshold and other technical reasons.

Everyone kept telling Kingsley and Maddie to get divorced so Sterling would qualify for Medicaid. But that wasn’t an option for Kingsley, a British citizen who is in the U.S. on a green card after meeting Maddie on Tinder.

Ultimately, Kingsley’s insurer revised the faulty notice that he owed $2.5 million. The family was told the mistake had occurred because Sterling’s initial hospital stay and surgeries had not been preapproved, although Kingsley said the heart defect was discovered halfway through the pregnancy, making surgery inevitable.

Throughout Sterling’s life, Kingsley did his programming job at his daughter’s bedside, in her hospital room. As a web developer, he created visualizations that break down Sterling’s expensive care — it helped him make sense of it all. But he cries when he remembers those days.

He hates that Sterling’s life can be reduced to a 2-inch stack of printed-out medical bills and the phone calls he still must endure from errant billers.

Despite receiving a plethora of other bills in the tens of thousands, he and his wife eventually paid their $4,000 deductible, along with a smattering of smaller charges and fees for equipment rentals that weren’t covered. In April, Maddie gave birth to a son, Wren, and Kingsley said he knows Sterling served as her brother’s guardian angel.

“My daughter passed away. I’m not unscathed, but I’m not in financial ruin. The same can’t be said for every family,” he said. “How lucky am I? I went through the worst thing imaginable, and I consider myself lucky — what kind of weird, messed-up logic is that?”

Navigating the NICU

Contact your insurance company to talk through your NICU stay costs, including what is covered and what is not. If your baby’s not already on your plan, make sure to add them.

Speak to a social worker immediately about applying for Medicaid or the Supplemental Security Income program, known as SSI. If your child qualifies, it can dramatically reduce your personal cost for a child with extensive medical bills.

The March of Dimes offers a “My NICU Baby” app designed to help you wade through the overwhelming experience. The nonprofit says the app can help you learn about caring for your baby in the NICU and at home, as well as monitor your baby’s progress, manage your own health, and keep track of your to-do list and questions.

If particular insurers or bills are confusing, reach out to your state insurance office. All states offer consumer support, and some states have dedicated advocates who can help you.

Kingsley Raspe also compiled advice for other families navigating neonatal intensive care unit stays for their babies.

Bill of the Month is a crowdsourced investigation by KHN and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

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.

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Hemp-Derived Delta-8 Skirts Marijuana Laws and Raises Health Concerns

Kaiser Health News:Health Industry - September 23, 2022

Suzan Kennedy has smoked marijuana, and says her Wisconsin roots mean she can handle booze, so she was not concerned earlier this year when a bartender in St. Paul, Minnesota, described a cocktail with the cannabinoid delta-8 THC as “a little bit potent.”

Hours after enjoying the tasty drink and the silliness that reminded Kennedy of a high from weed, she said, she started to feel “really shaky and faint” before collapsing in her friend’s arms. Kennedy regained consciousness and recovered, but her distaste for delta-8 remains, even though the substance is legal at the federal level, unlike marijuana.

“I’m not one to really tell people what to do,” said Kennedy, 35, who lives in Milwaukee and works in software sales. But if a friend tried to order a delta-8 drink, “I would tell them, ‘Absolutely not. You’re not putting that in your body.’”

The FDA and some marijuana industry experts share Kennedy’s concerns. At least a dozen states have banned the hemp-derived drug, including Colorado, Montana, New York, and Oregon, which have legalized marijuana. But delta-8 manufacturers call the concerns unfounded and say they’re driven by marijuana businesses trying to protect their market share.

So what is the difference? The flower of the marijuana plant, oil derived from it, and edibles made from those contain delta-9 tetrahydrocannabinol, the substance that produces the drug’s high, and can be legally sold only at dispensaries in states that have legalized marijuana. Similar products that contain delta-8 THC are sold online and at bars and retailers across much of the U.S., including some places where pot remains illegal. That’s because a 2018 federal law legalized hemp, a variety of the cannabis plant. Hemp isn’t allowed to contain more than 0.3% of the psychotropic delta-9 THC found in marijuana.

The concerns about delta-8 are largely focused on how it’s made. Delta-8 is typically produced by dissolving CBD — a compound found in cannabis plants — in solvents, such as toluene that is often found in paint thinner. Some people in the marijuana industry say that process leaves potentially harmful residue. A study published in the journal Chemical Research in Toxicology last year found lead, mercury, and silicon in delta-8 electronic cigarettes.

The FDA has issued warnings about the “serious health risks” of delta-8, citing concerns about the conversion process, and has received more than 100 reports of people hallucinating, vomiting, and losing consciousness, among other issues, after consuming it. From January 2021 through this February, national poison control centers received more than 2,300 delta-8 cases, 70% of which required the users to be evaluated at health care facilities, according to the FDA.

Delta-8 is “just the obvious solution to people who want to have access to cannabis but live in a state where it’s illegal,” said Dr. Peter Grinspoon, a primary care physician at Massachusetts General Hospital and a longtime medical cannabis provider. “You can either get in a lot of trouble buying cannabis, or you can get delta-8.”

Grinspoon described delta-8 as about half as potent as marijuana. But because of the lack of research into delta-8’s possible benefits and the absence of regulation, he would not recommend his patients use it. If it were regulated like Massachusetts’ medical and recreational marijuana programs, he said, harmful contaminants could be flagged or removed.

Christopher Hudalla, chief scientific officer at ProVerde Laboratories, a Massachusetts marijuana and hemp testing company, said he has examined thousands of delta-8 products and all contained contaminants that could be harmful to consumers’ health.

Delta-8 has “incredible potential as a therapeutic” because it has many of the same benefits as marijuana, minus some of the intoxication, said Hudalla. “But delta-8, like unicorns, doesn’t exist. What does exist in the market is synthetic mixtures of unknown garbage.”

Justin Journay, owner of the delta-8 brand 3Chi, is skeptical of the concerns about the products. He started the company in 2018 after hemp oil provided relief for his shoulder pain. He soon started wondering what other cannabinoids in hemp could do. “‘There’s got to be some gold in those hills,’” Journay recalled thinking. He said his Indiana-based company now has more than 300 employees and sponsors a NASCAR team.

When asked about the FDA’s reports of bad reactions, Journay said: “There are risks with THC. There absolutely are. There are risks with cheeseburgers.”

He attributes the side effects to taking too much. “We say, ‘Start low.’ You can always take more,” Journay said.

Journay said that he understands concerns about contaminants in delta-8 products and that his company was conducting tests to identify the tiny portion of substances that remain unknown, which he asserts are cannabinoids from the plant.

An analysis of 3Chi delta-8 oil conducted by Hudalla’s firm last year and posted on 3Chi’s website found multiple unidentified compounds that “do not occur naturally” and thus “would not be recommended for human consumption.” Delta-8 oil is still sold on 3Chi’s site.

Journay said the analysis found that only 0.4% of the oil contained unknown compounds. “How can they then definitively say that compound isn’t natural when they don’t even know what it is?” he said in an email.

“The vast majority of negative information out there and the push to make delta-8 illegal is coming from the marijuana industries,” Journay said. “It’s cutting into their profit margins, which is funny that the marijuana guys would all of a sudden be for prohibition.”

Delta-8 products do appear to be significantly cheaper than weed. For example, Curaleaf, one of the world’s largest cannabis companies, offers packages of gummies that contain 100 milligrams of delta-9 THC for $25, plus sales tax, at a Massachusetts dispensary. At 3Chi, gummies with 400 milligrams of delta-8 cost $29.99 online, with no tax.

Journay’s criticism of the marijuana industry holds some truth, said Chris Lindsey, government relations director for the Marijuana Policy Project, which advocates for legalization of marijuana for adults. “We see this happen in every single adult-use legalization state,” said Lindsey. “Their established medical cannabis industry will sometimes be your loudest opponents, and that’s a business thing. That’s not a marijuana thing.”

Still, the bans might not be working fully. In New York, which banned delta-8 in 2021, Lindsey said, it’s available at any bodega.

In July, Minnesota implemented a law that limits the amount of THC, including delta-8, allowed in hemp products outside of its medical marijuana program. News reports said the law would wipe out delta-8. But the state cannot “control what’s being sold over the internet outside of Minnesota and shipped in,” said Maren Schroeder, policy director for Sensible Change Minnesota, which aims to legalize recreational cannabis for adults.

Max Barber, a writer and editor in Minneapolis, remains interested in delta-8 despite his state’s restrictions. Even though he could likely obtain a medical marijuana prescription because he has an anxiety disorder and chronic sleep problems, he hasn’t pursued it because pot made his anxiety worse. He used CBD oil but found the effects inconsistent. In March 2021, he tried a 10-milligram delta-8 gummy.

“It got me pretty high, which I don’t enjoy,” he said.

Then he found what he considers the right dosage for him: one-third of a gummy, which he takes in the evening. He said he now gets between six and eight hours of sleep each night, has less anxiety, and is better able to focus. “I have become kind of an evangelist for delta-8 for everyone I know who has sleep problems,” said Barber, who bought enough gummies to last for months after the new law went into effect.

To address concerns about delta-8, the federal government should regulate it and make accessing cannabis easier for consumers, said Paul Armentano, deputy director of the National Organization for the Reform of Marijuana Laws.

He pointed to a recent study in the International Journal of Drug Policy showing that the number of Google searches for delta-8 in the U.S. soared in 2021 and that interest was especially high in states that restricted cannabis use. “In an environment where whole-plant cannabis is legally available, there would be little to no demand for these alternative products,” said Armentano.

Lindsey, of the Marijuana Policy Project, isn’t so sure that would matter. When he first learned of delta-8’s growing popularity in 2021, he thought it would go the way of drugs like K2 or Spice that he said fall between the regulatory rules long enough to get on shelves before eventually getting shut down.

“That didn’t materialize,” said Lindsey. “The more that we understand about that plant, the more of these different cannabinoids are going to come out.” And that, he said, will in turn spur interest from consumers and businesses.

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.

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KHN’s ‘What the Health?’: Biden Declares the Pandemic ‘Over’

Kaiser Health News:Health Industry - September 22, 2022

Can’t see the audio player? Click here to listen on Acast. You can also listen on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

President Joe Biden’s declaration in a national interview that the covid-19 pandemic is “over” has complicated his own administration’s efforts to get Congress to provide more funding for treatments and vaccines, and to get the public to go get yet another booster.

Meanwhile, concerns about a return of medical inflation for the first time in a decade is helping boost insurance premiums, and private companies are scrambling to claim their piece of the health care spending pie.

This week’s panelists are Julie Rovner of KHN, Anna Edney of Bloomberg News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Lauren Weber of KHN.

Among the takeaways from this week’s episode:

  • Biden’s comment to “60 Minutes” that the pandemic was over — even though covid is still an issue — highlights the difficulty in communicating to the public how to transition from a public health crisis to a public health problem.
  • Much of the country may agree with the president, as evidenced by fewer people using face masks regularly and a decreased number of commercial restrictions related to covid. But several hundred people are still dying each day, a high toll often overlooked.
  • Insurance premiums appear to be on the upswing this fall, even though medical costs have not been rising as quickly as other parts of the economy in recent months. The increase may reflect insurers’ concerns that, coming out of the covid crisis, consumers will be seeking more medical services.
  • One aspect of health business that is driving up costs is the increased investment by private equity companies, which are expanding their reach beyond emergency room doctors and a few other specialties to a wider range of medical services, including gastroenterology and ophthalmology.
  • Another concern for the future of health costs is the move toward consolidation in health care. Among recent developments on that front were Amazon’s announcement it is moving into primary care with the purchase of One Medical and CVS’ decision to buy home health care company Signify Health.
  • Abortion policies continue to make news in various states. West Virginia passed a law that restricts nearly all abortions; several Utah Republican legislators sent cease-and-desist letters to abortion providers in their state; and Puerto Rico has a new political party campaigning on the issue of trying to curb the commonwealth’s liberal abortion law.
  • While Democrats hope the issue of abortion will swing more voters their way in the midterm elections, it’s not clear whether overall support for abortion will be a deciding issue for voters in more conservative states and bring any changes.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read, too:

Julie Rovner: The Anchorage Daily News’ “Many Alaska Pharmacies Are Understaffed, Leading to Sporadic Hours and Patients Turned Away,” by Annie Berman

Joanne Kenen: Capital B’s “Clinicians Dismiss Black Women’s Pain. The Consequences Are Dire,” by Margo Snipe

Anna Edney: The Guardian’s “Fury Over ‘Forever Chemicals’ as US States Spread Toxic Sewage Sludge,” by Tom Perkins

Lauren Weber: KHN’s “Doctors Rush to Use Supreme Court Ruling to Escape Opioid Charges,” by Brett Kelman

Also mentioned in this week’s episode:

To hear all our podcasts, click here.

And subscribe to KHN’s What the Health? on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.

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.

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HHS Approves 12-month Extension of Postpartum Medicaid and CHIP Coverage in North Carolina

HHS Gov News - September 22, 2022
Up to an additional 28,000 people will now be eligible for Medicaid or CHIP for a full year after pregnancy in North Carolina

Padres con hijos muy enfermos encuentran consuelo y esperanza en la ayuda de hospicio en el hogar

Kaiser Health News:Marketplace - September 22, 2022

Pomona, California.- Cuando conoces por primera vez a Aaron Martinez, de 17 meses, no es evidente que algo está catastróficamente mal.

Lo que ves es un hermoso niño pequeño con piel suave y brillante, abundante cabello castaño y una sonrisa cautivadora. Lo que escuchas son arrullos y gritos que no indican de inmediato que hay algo  mal.

Pero sus padres, Adriana Pinedo y Héctor Martínez, saben bien la dolorosa verdad.

Aunque los médicos y la partera de Adriana habían descrito el embarazo como “perfecto” durante los nueve meses, Aaron nació con la mayoría de las células cerebrales muertas, como resultado de dos accidentes cerebrovasculares y una hemorragia masiva que sufrió mientras estaba en el útero.

Los médicos no están seguros de qué causó las anomalías que dejaron a Aaron prácticamente sin función cognitiva ni movilidad física. Su voluminosa cabellera esconde una cabeza cuya circunferencia es demasiado pequeña para su edad. Tiene epilepsia, lo que desencadena múltiples convulsiones al día, y su sonrisa no siempre es lo que parece. “Podría ser una sonrisa; podría ser una convulsión”, dijo su madre.

Poco después del nacimiento de Aaron, los doctores le dijeron a Adriana, de 34 años, y a Héctor, de 35, que no había esperanza y que debían “dejar que la naturaleza siguiera su curso”. Meses después se enterarían de que los médicos no esperaban que el niño viviera más de cinco días. El día 5, sus padres lo pusieron bajo cuidados paliativos en el hogar, lo que ha continuado hasta su segundo año de vida.

La familia recibe visitas semanales de enfermeras de cuidados paliativos, terapeutas, trabajadores sociales y un capellán en el pequeño apartamento de una habitación que alquilan en una casa de familia, en una tranquila calle residencial en esta ciudad del Inland Empire.

Uno de los criterios principales para el cuidado de hospicio, establecido por Medicare principalmente para personas mayores pero que también aplica a niños, es un diagnóstico de seis meses o menos de vida. Sin embargo, en el transcurso de 17 meses, el equipo médico de Aaron ha vuelto a certificar repetidamente su elegibilidad para cuidados paliativos.

Según una disposición de la Ley de Cuidado de Salud a Bajo Precio (ACA) de 2010, a los niños inscritos en Medicaid o en el Programa de Seguro Médico Infantil (CHIP) se les permite, a diferencia de los adultos, estar en cuidados paliativos mientras continúan recibiendo atención curativa, o para prolongar la vida. Las aseguradoras comerciales no están obligadas a cubrir esta “atención concurrente”, como se la denomina, pero ahora muchas la cubren.

A más de una década de su creación, se reconoce ampliamente que la atención concurrente ha mejorado la calidad de vida de muchos niños con enfermedades terminales, aliviado el estrés de la familia y, en algunos casos, mantenido la esperanza de una cura. Pero el acuerdo puede contribuir a un doloroso dilema para padres como Adriana y Héctor, quienes se debaten entre su feroz compromiso con su hijo y la futilidad de saber que su condición lo deja sin esperanza en un futuro.

“Podríamos perder una vida, pero si sigue viviendo así, perderemos tres”, dijo Adriana. “No hay calidad de vida para él ni para nosotros”

Los médicos de Aaron ahora dicen que posiblemente podría vivir por años. Su cuerpo no ha dejado de crecer desde que nació. Está en el percentil 96 de estatura para su edad y su peso está en el promedio.

Sus padres han hablado sobre “graduarlo” del hospicio. Pero nunca está estable por mucho tiempo, y agradecen las visitas del equipo de cuidados paliativos. Las convulsiones, a veces 30 al día, son un asalto persistente a su cerebro y, a medida que crece, se deben cambiar los medicamentos para controlarlas o recalibrar las dosis. Está en riesgo continuo de problemas gastrointestinales y acumulación de líquido potencialmente mortal en sus pulmones.

Adriana, que trabaja desde casa para una organización de salud pública sin fines de lucro, pasa gran parte de su tiempo con Aaron, mientras Héctor trabaja como paisajista. Dijo que ha elegido vivir el momento, porque de lo contrario su mente divaga hacia un futuro en el que “él podría morir, o no, y terminaré cambiando los pañales de un hombre de 40 años”.  Cualquiera de eso, dijo, “va a ser terrible”.

Si bien el cáncer es una de las principales enfermedades que afectan a los niños en cuidados paliativos, muchos otros, como Aaron, tienen defectos congénitos raros, deficiencias neurológicas graves o deficiencias metabólicas poco comunes.

“Tenemos enfermedades que las familias nos dicen que son uno de los 10 casos en el mundo”, dijo el doctor Glen Komatsu, director médico de TrinityKids Care, con sede en Torrance, que brinda servicios de hospicio en el hogar a Aaron y a más de 70 niños en los condados de Los Ángeles y Orange.

En los años previos a la implementación de ACA, defensores de la salud pediátrica presionaron mucho por la provisión de atención concurrente. Sin la posibilidad de cuidados para prolongar la vida o la esperanza de una cura, muchos padres se negaban a llevar a sus hijos con enfermedades terminales a un hospicio, pensando que equivalía a darse por vencidos.

Eso significaba que toda la familia perdía el apoyo que el hospicio puede brindar, no solo alivio del dolor y consuelo para el niño moribundo, sino atención emocional y espiritual para los padres y hermanos bajo presión extrema.

TrinityKids Care, administrado por Providence, el gran sistema nacional de salud católico, no solo envía enfermeras, trabajadores sociales y capellanes a los hogares. Para los pacientes participantes y sus hermanos, también ofrece proyectos de arte y ciencia, clases de ejercicios, películas y música. Durante la pandemia, estas actividades se llevaron a cabo a través de Zoom y voluntarios llevaban los suministros necesarios a los hogares de los niños.

La capacidad de obtener tratamientos que prolonguen sus vidas es una de las principales razones por las que los niños en cuidados concurrentes tienen más probabilidades que los adultos de sobrevivir al diagnóstico de seis meses de vida requerido para el hospicio.

“La atención concurrente, por su propia intención, muy claramente extenderá sus vidas, y al extender sus vidas ya no serán elegibles para cuidados paliativos si se utiliza el criterio de expectativa de vida de seis meses”, dijo el doctor David Steinhorn, médico de cuidados intensivos pediátricos en Virginia, que ha ayudado a desarrollar numerosos programas de cuidados paliativos infantiles en el país.

Otro factor es que los niños, incluso los enfermos, son simplemente más fuertes que muchas personas mayores.

“Los niños enfermos suelen estar sanos, excepto por un órgano”, dijo la doctora Debra Lotstein, jefa de la división de confort y cuidados paliativos del Children’s Hospital Los Angeles. “Pueden tener cáncer en el cuerpo, pero sus corazones y sus pulmones están bien, en comparación con una persona de 90 años que, de base, no es tan resistente”.

Todos los órganos vitales de Aaron Martinez, excepto su cerebro, parecen estar funcionando. “Ha habido momentos en los que lo traemos, y la enfermera mira el expediente y lo mira, y no puede creer que sea ese niño”, dijo Héctor, su padre.

Cuando los niños superan la expectativa de vida de seis meses, se les debe volver a certificar para permanecer en el hospicio. Steinhorn dijo que, en muchos casos, está dispuesto a volver a certificar a sus pacientes pediátricos indefinidamente.

Incluso con médicos que los defienden, no siempre es fácil para los niños recibir cuidados paliativos. La mayoría de los hospicios atienden principalmente a adultos y son reacios a aceptar niños.

“El hospicio dirá: ‘No tenemos la capacidad para tratar niños. Nuestras enfermeras no están capacitadas. Es diferente. Simplemente no podemos hacerlo’”, dijo Lori Butterworth, cofundadora de Children’s Hospice and Palliative Care Coalition of California en Watsonville. “La otra razón es no querer, porque es existencialmente devastador, triste y duro”.

Las finanzas también juegan un papel. El cuidado de hospicio en el hogar se paga a una tarifa diaria establecida por Medicare (un poco más de $200 por día durante los primeros dos meses, alrededor de $161 por día después) y generalmente es la misma para niños y adultos. Los niños, en particular aquellos con enfermedades raras, a menudo requieren cuidados más intensivos e innovadores, por lo que el pago no alcanza tanto.

La provisión de atención concurrente ha hecho que el cuidado de pacientes pediátricos sea más viable para las organizaciones de cuidados paliativos, dijeron Steinhorn y otros. Según ACA, muchos de los gastos de ciertos medicamentos y servicios médicos pueden trasladarse al seguro primario del paciente, dejando a los hospicios responsables por el alivio del dolor y la atención de confort.

Aún así, la cantidad relativamente pequeña de niños que mueren cada año por dolencias prolongadas difícilmente hace que el hospicio pediátrico sea una línea de negocios atractiva en una industria que anhela crecer, especialmente una en la que los inversores de capital privado están activos y buscan pagos grandes.

En California, solo 21 de 1,336 hospicios informaron tener un programa de cuidados paliativos pediátricos especializado, y 59 dijeron que atendían al menos a un paciente menor de 21 años, según un análisis de datos estatales de 2020 realizado por Cordt Kassner, director ejecutivo de Hospice Analytics en Colorado Springs, Colorado .

Los proveedores de cuidados paliativos que atienden a niños a menudo se enfrentan a un desafío más básico: incluso con la posibilidad de atención concurrente, muchos padres aún equiparan el cuidado de hospicio con la aceptación de la muerte.

Ese fue inicialmente el caso de Matt y Reese Sonnen, residentes de Los Ángeles cuya hija, Layla, nació con un trastorno convulsivo que no tenía nombre: su cerebro simplemente no se había desarrollado en el útero y una resonancia magnética mostró que “líquido había ocupado el espacio en donde no estaba el cerebro”, dijo su madre.

Cuando el equipo de Layla mencionó por primera vez el hospicio, “estaba en el auto hablando por teléfono y casi choco”, recordó Reese. “El primer pensamiento que me vino a la mente fue: ‘Es el final’, pero sentimos que ella no estaba cerca de eso, porque era fuerte, era poderosa. Era mi niña. Iba a superar esto”.

Aproximadamente tres meses después, cuando el sistema nervioso de Layla se deterioró y se retorcía de dolor, sus padres acordaron inscribirla en un hospicio con TrinityKids Care. Murió a las pocas semanas, poco después de su segundo cumpleaños. Estaba en los brazos de su madre, con Matt cerca.

“De repente, Layla exhaló una gran bocanada de aire. La enfermera me miró y dijo: ‘Ese fue su último aliento’. Literalmente estaba respirando su último aliento”, relató Reese. “Nunca quise volver a respirar, porque ahora sentía que la tenía en mis pulmones. No me hagas reír, no me hagas exhalar”.

Los padres de Layla no se arrepienten de su decisión de internarla en un hospicio. “Fue la decisión absolutamente correcta y, en retrospectiva, deberíamos haberlo hecho antes”, dijo Matt. “Estaba sufriendo y nosotros teníamos puestas anteojeras”.

Adriana Pinedo dijo que está “infinitamente agradecida” por el cuidado de hospicio, a pesar de la angustia por la condición de Aaron. A veces, la trabajadora social se detiene, dijo, solo para saludar y dejar un café con leche, un pequeño gesto que puede sentirse muy alentador. “Han sido nuestro salvavidas”, dijo.

Adriana habla de una amiga suya que tiene un bebé sano, también llamado Aaron, que está embarazada de su segundo hijo. “Están viviendo todas las cosas que estaban en nuestra lista. Y los quiero mucho”, dijo Adriana. “Pero es casi difícil de mirar, porque es como mirar las cosas que no obtuviste. Es como el día de Navidad, mirando a través de la ventana a la casa del vecino, y estás sentado allí en el frío”.

Sin embargo, parece palpablemente dividida entre ese remordimiento sombrío y el amor incondicional que los padres sienten por sus hijos. En un momento, Adriana se interrumpió a media frase y se volvió hacia su hijo, que estaba en los brazos de Héctor: “Sí, papi, eres tan lindo y sigues siendo mi sueño hecho realidad”.

Esta historia fue producida por KHN, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

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.

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Opponents of California’s Abortion Rights Measure Mislead on Expense to Taxpayers

Kaiser Health News:States - September 22, 2022

“With Proposition 1, the number of abortion seekers from other states will soar even higher, costing taxpayers millions more.”

California Together, No on Proposition 1, on its website, Aug. 16, 2022

California Together, a campaign led by religious and anti-abortion groups, is hoping to persuade voters to reject a ballot measure that would cement the right to abortion in the state’s constitution. The group is warning that taxpayers will be on the hook for an influx of abortion seekers from out of state.

Proposition 1 was placed on the ballot by the Democratic-controlled legislature in response to the U.S. Supreme Court’s decision to overturn Roe v. Wade. If passed, it would protect an individual’s “fundamental right to choose to have an abortion,” along with the right to birth control.

California Together’s website says: “With Proposition 1, the number of abortion seekers from other states will soar even higher, costing taxpayers millions more.”

The campaign raised similar cost concerns in a voter information guide that will be mailed out to every registered voter ahead of the Nov. 8 election. One prominent argument is that Proposition 1 will turn California into a “sanctuary state” for abortion seekers, including those in late-term pregnancy — and that would be a drain on tax dollars.

We decided to take a closer look at those eye-catching statements to see how well they hold up when broken down.

We reached out to California Together to find out the basis for its arguments against the measure. The campaign cited an analysis from the pro-abortion rights Guttmacher Institute, which estimated before Roe was overturned that the number of women ages 15 to 49 whose nearest abortion provider would be in California would increase 3,000% in response to state abortion bans. The Guttmacher analysis said most of California’s out-of-state patients would likely come from Arizona because it’s within driving distance.

California Together does not cite a specific cost to taxpayers for the measure. Rather, it points to millions of dollars the state has already allocated to support abortion and reproductive health services as an indication of how much more the state could spend if the proposed amendment passes.

Sources indicate that people are already coming to the state for abortion services.

Jessica Pinckney, executive director of Oakland-based Access Reproductive Justice, which provides financial and emotional support for people who have abortions in California, said the organization had experienced an increase in out-of-state calls even before the high court ruled in June. Pinckney anticipates handling more cases as more states restrict abortion — regardless of Proposition 1’s outcome.

Will It Cost Taxpayers Millions?

In its fiscal year 2022-23 budget, California committed more than $200 million to expanding reproductive health care services, including $20 million for a fund to cover the travel expenses of abortion seekers, regardless of what state they live in. Once it’s up and running in 2023, the fund will provide grants to nonprofit organizations that help women with transportation and lodging.

However, none of that spending is connected to Proposition 1, said Carolyn Chu, chief deputy legislative analyst at the nonpartisan Legislative Analyst’s Office. It’s already allocated in the budget and will be doled out next year regardless of what happens with the ballot measure.

In the end, the Legislative Analyst’s Office found “no direct fiscal effect” if Proposition 1 passes because Californians already have abortion protections. And people traveling from out of state don’t qualify for state-subsidized health programs, such as Medi-Cal, the state’s Medicaid program, Chu added in an interview. “If people were to travel to California for services, including abortion, that does not mean they’re eligible for Medi-Cal,” she said.

Still, Proposition 1 opponents see the cost argument playing out in a different way.

Richard Temple, a campaign strategist for California Together, said a “no” vote will send lawmakers a mandate to stop the support fund. “Defeat Prop. 1, and you send a loud signal to the legislature and to the governor that you don’t want to pay for those kinds of expenses for people coming in from out of state,” Temple said.

What About an Influx of Abortion Seekers?

A key element of California Together’s argument is pegged to the idea that California will become a sanctuary state for abortion seekers. Opponents assert that Proposition 1 opens the door to a new legal interpretation of the state’s Reproductive Privacy Act. Currently, that law allows abortion up to the point of viability, usually around the 24th week of pregnancy, or later to protect the life or health of the patient.

An argument made in the voter guide against the constitutional amendment is that it would allow all late-term abortions “even when the mother’s life is not in danger, even when the healthy baby could survive outside the womb.”

Because the proposition says the state can’t interfere with the right to abortion, opponents argue that current law restricting most abortions after viability will become unconstitutional. They contend that without restrictions, California will draw thousands, possibly millions, of women in late-term pregnancy.

Statistically, that’s unlikely. The state doesn’t report abortion figures, but nationwide only 1% of abortions happen at 21 weeks or later, according to the Centers for Disease Control and Prevention.

Whether there will be a new interpretation if Proposition 1 passes is up for debate.

UCLA law professor Cary Franklin, who specializes in reproductive rights, said that just because Proposition 1 establishes a general right to abortion doesn’t mean all abortion would become legal. Constitutional language is always broad, and laws and regulations can add restrictions to those rights. For example, she said, the Second Amendment to the U.S. Constitution grants the right to bear arms, but laws and regulations restrict children from purchasing guns.

“The amendment doesn’t displace any of that law,” Franklin said.

But current law was written and interpreted under California’s current constitution, which doesn’t have an explicit right to abortion, said Tom Campbell, a former legislator who teaches law at Chapman University. If Proposition 1 passes, courts might interpret things differently. “Any restriction imposed by the state on abortion would have to be reconsidered,” Campbell said.

The Legislative Analyst’s Office concluded that “whether a court might interpret the proposition to expand reproductive rights beyond existing law is unclear.”

California voters will soon have their say.

Polling has found widespread support for the constitutional amendment. An August survey by the Berkeley IGS Poll found 71% of voters would vote “yes” on Proposition 1. A September survey by the Public Policy Institute of California pegged support at 69%.

Our Ruling

California Together warns voters: “With Proposition 1, the number of abortion seekers from other states will soar even higher, costing taxpayers millions more.”

Proposition 1 would protect an individual’s “fundamental right to choose to have an abortion.”

While it could lead to more people coming to California for abortion services, that’s already happening, even before voters decide on the measure.

In addition, Proposition 1 doesn’t allocate any new spending. So the $20 million state fund to cover travel expenses for abortion seekers would exist regardless of whether the constitutional amendment is adopted. Bottom line: A nonpartisan analyst found there will be no direct fiscal impact to the state, and out-of-state residents don’t qualify for state-subsidized health programs.

It’s speculative that Proposition 1 would expand abortion rights beyond what’s currently allowed or that the state would allocate more money for out-of-state residents.

Because the statement contains some truth but ignores critical facts to give a different impression, we rate the statement Mostly False.

Sources

California Together, No on Proposition 1, “Q&A: What You Should Know About Prop 1,” accessed Aug. 22, 2022

Legislative Analyst’s Office, Analysis of Proposition 1, accessed Aug. 22, 2022

Email interview with Kelli Reid, director of client services at McNally Temple Associates, Aug. 24, 2022

Phone interview with Carolyn Chu, chief deputy legislative analyst, Legislative Analyst’s Office, Sept. 12, 2022

CalMatters, “California Fails to Collect Basic Abortion Data — Even as It Invites an Out-of-State Influx,” June 27, 2022

California Health Benefits Review Program, “Analysis of California Senate Bill 245 Abortion Services: Cost Sharing,” accessed Sept. 12, 2022

SB 1142, Abortion Services, accessed Sept. 12, 2022

Phone interview with Richard Temple, campaign strategist for California Together, Sept. 12, 2022

Phone interview with Cary Franklin, law professor at UCLA School of Law, Sept. 13, 2022

Phone interview with Luke Koushmaro, senior policy analyst, Legislative Analyst’s Office, Sept. 13, 2022

Gov. Gavin Newsom, remarks in Sacramento, California, June 27, 2022

Public Policy Institute of California, “PPIC Statewide Survey: Californians and Their Government,” accessed Sept. 13, 2022

California state budget, Health and human services summary document, accessed Sept. 14, 2022

Phone interview with Jessica Pinckney, executive director of Access Reproductive Justice, Sept. 15, 2022

Phone interview with Tom Campbell, law professor at Chapman University, Sept. 15, 2022

SB 1301, Reproductive Privacy Act, accessed Sept. 19, 2022

Email interview with H.D. Palmer, deputy director for external affairs at the California Department of Finance, Sept. 20, 2022

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

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.

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This story can be republished for free (details).

Death Is Anything but a Dying Business as Private Equity Cashes In

Kaiser Health News:Health Industry - September 22, 2022

Private equity firms are investing in health care from cradle to grave, and in that latter category quite literally. A small but growing percentage of the funeral home industry — and the broader death care market — is being gobbled up by private equity-backed firms attracted by high profit margins, predictable income, and the eventual deaths of tens of millions of baby boomers.

The funeral home industry is in many ways a prime target for private equity, which looks for markets that are highly fragmented and could benefit from consolidation. By cobbling together chains of funeral homes, these firms can leverage economies of scale in purchasing, improve marketing strategies, and share administrative functions.

According to industry officials, about 19,000 funeral homes make up the $23 billion industry in the U.S., at least 80% of which remain privately owned and operated — mostly mom and pop businesses, with a few regional chains thrown in. The remaining 20%, or about 3,800 homes, are owned by funeral home chains, and private equity-backed firms own about 1,000 of those.

Consumer advocates worry that private equity firms will follow the lead of publicly traded companies that have built large chains of funeral homes and raised prices for consumers. “The real master that’s being served is not the grieving family who’s paying the bill — it’s the shareholder,” said Joshua Slocum, executive director of the Funeral Consumers Alliance, a nonprofit that seeks to educate consumers about funeral costs and services.

Although funeral price data is not readily available to the public, surveys by the local affiliates of the alliance have found that when publicly traded or private equity-backed chains acquire individual funeral homes, price hikes tend to follow.

In Tucson, Arizona, for example, when a local owner sold Angel Valley Funeral Home in 2019 to private equity-backed Foundation Partners Group, prices increased from $425 to $760 for a cremation, from $1,840 to $2,485 for a burial with no viewing or visitation, and from $3,405 to $4,480 for a full, economical funeral.

In the Arizona city of Mesa, the sale of Lakeshore Mortuary to the publicly traded funeral home chain Service Corporation International led to price increases for a cremation from $1,565 in 2018 to $1,770 in 2021, for a burial from $2,795 to $3,680, and for an economical funeral from $4,385 to $5,090.

“We believe our pricing is competitive and reasonable in the markets in which we operate,” a Service Corporation International official said in an email.

Details of those price increases were provided by Martha Lundgren, a member of the Funeral Consumers Alliance of Arizona’s board. She said funeral home acquisitions have led to the cancellation of pricing agreements negotiated on behalf of consumers who are members of the alliance. In 2020, a cremation at Adair Dodge Chapel in Tucson cost members $395, nearly two-thirds off the $1,100 standard price. But after Foundation Partners Group acquired the funeral home, the member pricing agreement was canceled, and the price of a direct cremation rose to $1,370.

Foundation Partners Group officials said the price increases partly reflect the higher price of supplies, such as caskets, as well as increasing labor costs. But most of the increases, they said, represent a move to a more transparent pricing system that includes administrative and transportation fees that other funeral homes add on later.

“We don’t take advantage of people in there when they’re not thinking clearly,” said Kent Robertson, the company’s president and CEO. “That’s just not who we are.”

A big surge of consolidation happened in the U.S. funeral home industry in the late 1980s and early 1990s, and again around 2010, said Chris Cruger, a Phoenix-based consultant to the industry. And acquisitions have reached a feverish pace in the past two to three years. Many investors are banking on a significant uptick in demand for death care services in the coming years as 73 million baby boomers, the oldest of whom will be in their late 70s, continue to age.

“Sheer demographics are obviously in everybody’s favor here,” Cruger said. Funeral homes have attractive margins already, and combining them into chains to share administrative costs could boost profits even more.

Meanwhile, many funeral home owner-operators are reaching retirement age and have no one in the family willing to take over. A 2021 survey by the National Funeral Directors Association found that 27% of owners planned to sell their business or retire within five years.

The desire to sell, combined with the investment money pouring into the field, has driven prices for funeral homes to new heights. Before private equity turned its eye to funeral homes, they were selling for three to five times their annual revenue. “Now I’m hearing seven to nine,” said Barbara Kemmis, executive director of the Cremation Association of North America, a trade group for the cremation industry.

The value in funeral homes lies in more than their brick-and-mortar assets. Funeral home directors are often integral parts of their communities and have established significant goodwill with their neighbors. So when corporate chains acquire these homes, they rarely change the name and often keep the former owners around to smooth the transition.

Tony Kumming, president of the NewBridge Group in Tampa, Florida, helps broker funeral home sales. Many of his clients remain skeptical of the large firms and often will take less money to sell to someone they believe won’t stain their hard-earned reputations. Most former owners plan to live in the community and don’t want their friends and neighbors to be mistreated. “I’m not saying someone is going to take half of what another company is offering,” Kumming said. “But there’s two big pieces to a sale now: That’s money and the right fit.”

Five years ago, when Robert Olthof decided to sell his family’s funeral home in Elmira, New York, he contacted some of the large publicly traded funeral home chains. But as representatives from multiple companies visited him to make their offers, Olthof realized that none of the big chains had sent someone versed in the service side of the business. “They sent their accountants, and they sent their lawyers,” he recalled. “Everything was about the numbers, the numbers, the numbers. And I didn’t like that.”

Instead, Olthof sold to Greg Rollins, a former funeral director who had amassed a privately owned, 90-site chain of funeral homes throughout the Northeast. Rollins had offered less money than the big chains had, but he knew what it was like to be awoken at 2:30 a.m. and put on a suit to go help a grieving family. He knew what it was like to bury a child.

“I can’t put a dollar-amount value on how much it’s really worth selling to a person who is a funeral director themselves,” Olthof said. “Because moving forward, your name is still going to be on the front of that building.”

Victoria Haneman, a Creighton University School of Law professor who studies the funeral home industry, worries that new corporate ownership might be devastating for grieving families. “They are not behaving like normal, rational consumers,” she said. “They’re not bargain-shopping because death is viewed as an inappropriate time to bargain-shop.”

For most families, a funeral will be one of the largest expenses they ever incur. But they often enter the shopping process cognitively impaired by grief and unsure of what is customary or appropriate.

Only 1 in 5 consumers visit more than one funeral home to obtain a price list, according to a 2022 survey commissioned by the Consumer Federation of America. And online comparisons are virtually impossible — a study by the federation and the Funeral Consumers Alliance found that just 18% of the funeral homes they sampled listed their prices on their websites. As a result, families generally lean heavily on the expertise of a single funeral director, who has a motive to sell them the most expensive options. So consumers can be pushed into buying packages for open-casket funerals that include embalming and other services that drive up the cost and may be unnecessary.

“Is that sort of pickled, shellacked, cosmetized, preserved corpse where the future will be? I don’t know that the answer is ‘yes,’” Haneman said. “And I think there are investors who are betting that it’s not.”

Foundation Partners Group is a prime example. Backed by the private equity firm Access Holdings, the funeral home chain shifted five years ago to acquiring funeral homes with high cremation rates. Cremation rates nationally have been steadily climbing over the past two decades, with nearly 58% of families now choosing cremation over casket burials. Foundation Partners expects that rate to hit 70% by 2030.

The company has acquired more than 75 businesses in high-cremation states, including Arizona, California, Colorado, and Florida. Most of those funeral homes average a bit over 150 funerals per year.

Individual funeral homes “don’t have access to marketing budgets, they don’t have access to safety and health plans and benefits and these different things,” said Robertson, the Foundation Partners CEO. “And because we have the ability to drive marketing and do other things, we also take that 150-call firm to maybe 200 calls.”

Robertson said the funeral home industry is different from other sectors that private equity firms might consider investing in, describing it as a calling comparable to working in hospice care. Foundation Partners is fortunate their backers understand the service part of the industry, as well as the financials, he said. “Private equity firms aren’t necessarily known for having deep compassion for people. They’re more known for their financial returns,” he said. “To get both is really important.”

Foundation Partners owns Tulip Cremation, an online service that allows people to order a cremation with just a few clicks — and without having to set foot in a funeral home. Tulip currently operates in nine states where Foundation Partners has funeral homes. The company expects the service to eventually operate nationally.

Haneman said innovative approaches like Tulip’s are sorely needed in the funeral home industry, which has barely changed in 100 years. “It’s absurd to me that the average cost of a funeral is running $7,000 to $10,000,” she said. “People need less expensive options, and innovation is going to get us there.” Tulip charges less than $1,000 for a cremation; ashes are mailed back to the families.

Other online cremation services are Solace Cremation, Smart Cremation, and Lumen Cremation.

“Private equity investment has the potential to go one of two directions: It’s either going to entrench status quo and drive price, or the purpose of the investment is going to be disruption,” Haneman said. “And disruption promises the possibility of bringing more affordable processes to market.”

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.

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Buy and Bust: After Platinum Health Took Control of Noble Sites, All Hospital Workers Were Fired

Kaiser Health News:Health Industry - September 22, 2022

The news, under Noble Health letterhead, arrived at 5:05 p.m. on a Friday, with the subject line: “Urgent Notice.” Audrain Community Hospital, Paul Huemann’s workplace of 32 years, was letting workers go.

Word travels fast in a small town. Huemann’s wife, Kym, first heard the bad news in the car when a friend who’d gotten the letter, too, texted.

“Your termination was not foreseeable,” said the letter, dated Sept. 8 and signed Platinum Health Systems, adding that the firing was permanent “with no recourse” and that the “medical facility will be shuttered.”

“I don’t know what my next steps are,” said 52-year-old Huemann, who supervised the laboratory at the Audrain hospital.

The future for the Huemanns, hundreds of other workers, and thousands of patients in two small Missouri towns began to unravel long before that afternoon. The drama playing out in Paul Huemann’s hometown is familiar to many who live in rural America: Communities are so desperate to keep their hospital open that they’re willing to gamble on any buyer, including those backed by private equity.

Sometimes they lose.

Noble Health, a three-year-old private equity-backed startup, had acquired Audrain and nearby Callaway Community Hospital during the pandemic. In March, it suspended all hospital services and later furloughed 181 employees, state records show. 

Noble — facing staggering debt, more than a dozen lawsuits, and at least two federal investigations — struck a deal to sell the hospitals in April to Platinum Neighbors, which is affiliated with Texas-based Platinum Team Management and Platinum Health Systems. In late June, Platinum asked Missouri officials to extend until Sept. 21 a deadline to reopen the hospitals. On Tuesday, Platinum officials told KHN that, “on behalf of Noble,” they asked Missouri regulators for an additional 30-day extension “in an attempt to explore all alternatives for reopening these facilities,” Ryann Gordon, Platinum’s director of marketing, said. “The backpay and health benefits of the employees is of utmost importance.”

Hours before the licensing deadline Wednesday, Platinum submitted a request for a 90-day variance. Missouri regulations do not allow another extension within a year, said Lisa Cox, a spokesperson for the Missouri Department of Health and Senior Services. So the state “worked with them” and granted the request, she said.

Platinum said the hospitals need time to complete construction projects. Audrain’s “emergency room area” has broken windows, and Callaway’s hospital needs “critical repair to the plumbing,” according to the state approval letter. The hospitals can change ownership during the 90 days, Cox said.

Cory Countryman, president of Platinum Health Systems, confirmed the termination of the remaining hospital staff. “We are working with multiple partners to reopen the hospitals,” he said.

That could involve a new owner. One prospect is Owen Shuler, a Georgia-based entrepreneur, who said he is thinking about buying them. Shuler, who was reached by phone after he’d visited the rural communities, said, “I love what I see.”

“It’s heartbreaking as to what has occurred,” said Shuler, whose companies include Bankers Realty Corp. and Shuler Capital Corp. If he bought the hospitals, he said, he would do so as managing director of his new venture, CareONE Global. “In terms of the due diligence, I do not like what I’m seeing and learning,” he said. What he concluded from his review is that “private equity and venture capital need to be kept the heck out of health care.”

On his LinkedIn profile, Shuler said he “brings a lifelong perspective from a family owned skilled care business” as well as expertise in “telemedicine and healthcare services.”

Shuler, who confirmed the hospitals were saddled with substantial debt — “in the ballpark” of $45 million to $50 million — said, “I am not prepared to go on the record about business strategy quite yet.” He said his approach would be “holistic” and include telehealth. Many industry leaders have argued telehealth is a way to bring high-quality medicine to rural communities that can’t afford, and don’t need, a full platoon of specialists on-site.

“Our target is acquiring hospitals in rural and disadvantaged areas and introducing our capabilities to them,” Shuler said, adding that fixing the two “basically broken” Missouri hospitals from the bottom up would be “much easier than trying to go into a healthy system.”

Still, it’s unclear whether Shuler or another buyer will come through and what it would take to reopen them after years of ownership instability and financial trouble.

Venture capital and private equity firm Nueterra Capital launched Noble in December 2019 with executives who had never run a hospital, including Donald R. Peterson, a co-founder who prior to joining Noble had been accused of Medicare fraud. Peterson settled that case without admitting wrongdoing and in August 2019 agreed to be excluded for five years from Medicare, Medicaid, and all other federal health programs, according to the Health and Human Services Office of Inspector General.

Federal regulators did not block the acquisition in which Peterson was involved. “All ownership and managing control information is self-reported,” said Centers for Medicare & Medicaid Services spokesperson Kristen Clemens.

It didn’t take long for problems to surface under Noble Health’s stewardship. Noble has accepted nearly $20 million in federal covid-19 relief funds, including $4.8 million from paycheck protection programs, according to public records.

Yet doctors, nurses, and patients saw evidence that the new owners were skimping on services — failing to pay for and stock surgical supplies and drugs. In Callaway, state inspectors determined that conditions in the hospital endangered patients. Former workers provided KHN bills and pay stubs they said showed Noble had also stopped paying for employee health, dental, vision, and life insurance benefits.

After employees filed complaints about surprise medical bills, the Department of Labor’s Employee Benefits Security Administration launched an investigation in early March, according to a letter sent to the company and obtained by KHN. The department confirmed a second investigation by another one of its divisions, Wage and Hour, into Noble’s management of its Audrain hospital and clinic.

In April, Noble struck a deal to sell both hospitals for $2 and a stock transfer to Platinum, which assumed all liabilities, according to the agreement. In a June 22 letter to state regulators about the hospitals’ operating licenses, Platinum said, “We are requesting this continuance as Noble Health stock has been transferred to Platinum Medical Management.”

While visiting the hospitals in April, Countryman told employees it was a “priority” to pay the back wages Noble owed them.

Neither Noble nor Platinum made good on that in the months since, employees contend. In addition to the federal investigations, nine wage claims — the largest for $355,000 — have been filed against Noble in Kansas, according to data provided through a Kansas Open Records Act request.

By early August, others were recognizing the employee complaints. Principal, which provided dental and vision care coverage, sent letters to workers saying it would not demand that any worker repay benefits the insurer covered after Noble stopped sending premiums for employee coverage. “This situation is not typical,” wrote Principal spokesperson Ashley Miller in an email.

Huemann, as laboratory supervisor, was among the workers who weren’t furloughed in the spring. They reported for work every day in the hopes that the Audrain hospital would reopen. Huemann checked reagents and kept machines operational even as money for supplies was tight.

“We couldn’t get anything,” Huemann said, “so we were living with what we had.”

Huemann, who provided pay stubs to KHN, said he received a paycheck from Noble in late March. He said he did not receive another paycheck until late May. He received regular paychecks in June and early July. But his second July check, under Platinum, was a week late. His final paycheck arrived Aug. 8 and was also late.

His last seven checks came from three companies. They were all on Platinum’s watch: Initially Platinum Neighbors issued the checks, then Callaway County Community Hospital, and finally Noble Health Audrain Inc.

“Everyone cashed their check as soon as they got it,” Huemann said. “There are so many red flags. But you know, we’re at their mercy, we have no control, and we’re still thankful they are saving us.”

The check stubs also show the hospital’s operators deducted $1,385 in total from Huemann’s pay for insurance. The medical insurance was supposed to be with Blue Cross and Blue Shield of Texas, but Huemann said he never received a card and could not confirm coverage.

“I called four or five times on different days,” he said. “They could never find me no matter how they looked me up, with Social Security or date of birth, or anything.”

Countryman referred all financial questions to Platinum’s corporate offices. Ryan Cole, chief executive of Platinum Team, did not directly respond to calls and emails seeking comment.

Some doctors left town as the upheaval swallowed the hospitals.

Others, such as family medicine doctor Diane Jacobi and her nurse practitioner, Regina Hill, joined MU Health Care, affiliated with the University of Missouri, in Mexico, Missouri, the 11,000-person town where Audrain Community Hospital is located.

Jacobi said her patients want local care. “I don’t know if you’re a mama, but if you’re in labor, the idea that you have to spend 45 minutes in a car on the way to the hospital is nerve-wracking,” she said. “It’s safer if you have care.”

Lou Leonatti, an attorney who lives in Mexico, said he feels so strongly that the community needs a hospital and emergency care that he provided loans last year to Noble so the company could meet payroll. Leonatti’s personal $60,000 loan, with an interest rate of about 3%, was due in January but, he said, remains unpaid.

Leonatti helped start Project Sunrise, a local economic development group. If a new agreement is not reached, he said, “we would like to have a Plan B available.”

Peterson, who helped launch Noble’s failed effort to turn around the two Missouri hospitals, seems to have found his Plan B in Dubai. “I’m sitting in the Emirates Air lounge in Dubai marveling at the experience being afforded me at the tender age of 68,” he wrote on LinkedIn. “I’ll be in Riyadh for the next week finishing up due diligence on launching a new business there.”

The post made Tonya Linthacum, a nurse practitioner who worked at Audrain’s cancer screening center for more than two decades, furious. She said that he “destroyed a lot of people’s lives and livelihoods,” adding that “to have someone dupe you like that” and “going on with no consequences. It’s just not the way the world is supposed to be.”

Peterson declined to comment.

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.

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Shift in Child Hospice Care Is a Lifeline for Parents Seeking a Measure of Comfort and Hope

Kaiser Health News:Health Industry - September 22, 2022

POMONA, Calif. — When you first meet 17-month-old Aaron Martinez, it’s not obvious that something is catastrophically wrong.

What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that don’t immediately signal anything is horribly awry.

But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.

Although Adriana’s doctors and midwife had described the pregnancy as “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.

Doctors aren’t sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. “It could be a smile; it could be a seizure,” his mother said.

Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should “let nature take its course.” They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.

The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.

One of the main criteria for hospice care, established by Medicare largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team has repeatedly recertified his hospice eligibility.

Under a provision of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.

More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.

“We could lose a life, but if he continues to live this way, we’ll lose three,” said Adriana. “There’s no quality of life for him or for us.”

Aaron’s doctors now say he could conceivably live for years. His body hasn’t stopped growing since he was born. He’s in the 96th percentile for height for his age, and his weight is about average.

His parents have talked about “graduating” him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.

Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.” Either of those, she said, “are going to suck.”

While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies. 

“We have diseases that families tell us are one of 10 cases in the world,” said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.

In the years leading up to the ACA’s implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.

TrinityKids Care, run by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the children’s homes.

The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.

“Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous children’s hospice programs across the U.S.

Another factor is that kids, even sick ones, are simply more robust than many older people.

“Sick kids are often otherwise healthy, except for one organ,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.”

All of Aaron Martinez’s vital organs, except for his brain, seem to be working. “There have been times when we’ve brought him in, and the nurse looks at the chart and looks at him, and she can’t believe it’s that child,” said his father, Hector.

When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.

Even with doctors advocating for them, it’s not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.

“The hospice will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,’” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting to, because it’s existentially devastating and sad and hard.”

Finances also play a role. Home hospice care is paid at a per diem rate set by Medicare — slightly over $200 a day for the first two months, about $161 a day after that — and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesn’t stretch as far.

The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patient’s primary insurance, leaving hospices responsible for pain relief and comfort care.

Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.

In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to an analysis of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.

Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.

When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘It is just the end,’ but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.”

About three months later, as Layla’s nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mother’s arms, with Matt close by.

“All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing in her last breath,” Reese recounted. “I never wanted to breathe again, because now I felt I had her in my lungs. Don’t make me laugh, don’t make me exhale.”

Layla’s parents have no regrets about their decision to put her in hospice. “It was the absolute right decision, and in hindsight we should have done it sooner,” Matt said. “She was suffering, and we had blinders on.”

Adriana Pinedo said she is “infinitely grateful” for hospice, despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They’ve been our lifeline,” she said.

Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. “All the stuff that was on our list, they’re living. And I love them dearly,” Adriana said. “But it’s almost hard to look, because it’s like looking at the stuff that you didn’t get. It’s like Christmas Day, staring through the window at the neighbor’s house, and you’re sitting there in the cold.”

Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hector’s arms: “Yes, Papi, you are so stinking cute, and you are still my dream come true.”

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

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.

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HHS Delivers First National Strategy to Support Family Caregivers

HHS Gov News - September 21, 2022
National Strategy to Support Family Caregivers

HHS Secretary Becerra Declares Public Health Emergency for Puerto Rico after Hurricane Fiona

HHS Gov News - September 21, 2022
HHS Secretary Xavier Becerra declares a Public Health Emergency for the U.S. territory of Puerto Rico due to the flooding impact of Hurricane Fiona.

Pruebas genéticas crean oportunidades de tratamiento, pero también confusión, entre las pacientes de cáncer de mama

Kaiser Health News:Marketplace - September 21, 2022

La última década ha sido testigo de una rápida expansión de las pruebas genéticas, que incluyen nuevos instrumentos para informar a las pacientes, a las que se les ha diagnosticado cáncer de mama, sobre el riesgo de recurrencia y para orientar su tratamiento.

Pero la relevancia clínica de muchas de las mutaciones hereditarias que ahora pueden identificarse sigue sin estar clara, y los expertos no se ponen de acuerdo sobre cuándo y cómo desplegar las nuevas pruebas disponibles. A veces, los pacientes tienen que pagar de su bolsillo por exámenes que todavía no son el estándar de atención, e incluso los oncólogos más actualizados pueden no estar seguros de cómo incorporar la avalancha de nueva información a lo que solían ser los protocolos de tratamiento estándar.

Hace un cuarto de siglo, Myriad Genetics introdujo la primera prueba genética del cáncer de mama para las mutaciones BRCA, dos genes asociados a un riesgo elevado de padecer cáncer de mama, abriendo la puerta a una nueva era en las pruebas genéticas.

Las mutaciones en los genes BRCA1 y BRCA2 son responsables de hasta la mitad de los cánceres de mama hereditarios, y las personas con una mutación problemática en uno de esos genes tienen entre un 45% y un 72% de probabilidades de desarrollar cáncer de mama a lo largo de su vida. También pueden tener un mayor riesgo de padecer cáncer de ovario, y otros tipos de cáncer, que las personas sin mutaciones dañinas en el BRCA.

Pero el significado clínico es menos claro para muchas otras pruebas genéticas.

Las pruebas de los genes BRCA1 y BRCA2 solían costar miles de dólares. Ahora, por una fracción de ese precio, los médicos pueden pedir a los laboratorios comerciales paneles de pruebas multigénicas que buscan mutaciones en docenas de genes. Algunas empresas de venta directa al consumidor ofrecen paneles de detección por unos pocos cientos de dólares, aunque su fiabilidad varía.

Cuando Jen Carbary fue diagnosticada con cáncer de mama en 2017 a la edad de 44 años, las pruebas genéticas identificaron una mutación en un gen llamado PALB2 que aumenta significativamente el riesgo de desarrollar cáncer de mama. Las directrices sugieren que las pacientes con cáncer de mama con una mutación PALB2, al igual que las que tienen mutaciones BRCA1 y BRCA2, consideren someterse a una mastectomía para reducir la posibilidad de una recurrencia del cáncer.

“Ojalá las pruebas genéticas fueran el estándar de atención médica”, dijo Carbary, que no debía nada por la prueba porque su aseguradora la cubrió.

Carbary, que vive en Sterling Heights (Michigan), contó que los resultados de las pruebas la reafirmaron en su decisión de someterse a una doble mastectomía y proporcionaron información importante a los miembros de su familia, entre ellos a su hija de 21 años y su hijo de 18, que probablemente se someterán a las pruebas a mediados de los 20 años o al iniciar los 30.

Pero a algunos expertos en cáncer de mama les preocupa que la generalización de las pruebas pueda identificar también mutaciones genéticas cuyo impacto no esté claro, lo que crearía ansiedad y llevaría a realizar más pruebas y tratamientos de dudoso valor que podrían aumentar los costos para el sistema sanitario.

También puede confundir al paciente.

“Ocurre a menudo que las pacientes acuden a nosotros después de obtener resultados confusos en otros lugares”, indicó el doctor Mark Robson, jefe del servicio de medicina mamaria del Memorial Sloan Kettering Cancer Center de Nueva York. Robson explicó que el centro oncológico cuenta con un servicio de genética clínica, formado por médicos y asesores genéticos, que ayuda a las personas a tomar decisiones sobre cómo gestionar los resultados de este tipo de pruebas.

Para las personas diagnosticadas con cáncer de mama, muchos grupos profesionales, incluida la influyente National Comprehensive Cancer Network (NCCN), recomiendan limitar las pruebas a ciertas personas, incluidas las que tienen factores de alto riesgo, como antecedentes familiares de cáncer de mama; las que tienen 45 años o menos cuando son diagnosticadas; y las que tienen ascendencia judía asquenazí.

Pero en 2019, la Sociedad Americana de Cirujanos de Mama (ASBrS) recomendó un enfoque diferente: Ofrecer pruebas genéticas a todas las pacientes que sean diagnosticadas o tengan antecedentes personales de cáncer de mama. La recomendación fue controvertida.

“Las directrices de la NCCN cubren a la mayoría de las mujeres que necesitan pruebas, pero nosotros queríamos hacerlas a todas”, señaló el doctor Eric Manahan, cirujano general en Dalton, Georgia, y miembro de la junta directiva de la ASBrS.

Las mutaciones en otros genes que se asocian al cáncer de mama son mucho menos comunes que las mutaciones en el BRCA1 y el BRCA2 y, por lo general, no aumentan tanto el riesgo de desarrollar cáncer de mama. El impacto de estos genes en el cáncer puede ser menos claro que el de los genes BRCA, cuya detección se lleva a cabo desde mediados de los años noventa.

Y la respuesta adecuada a las mutaciones menos comunes —ya sea una mastectomía para reducir el riesgo o un cribado intensivo— a menudo no está clara.

“Las cosas se vuelven cada vez más confusas cuando se examinan otros genes”, afirmó el doctor Steven Katz, profesor de medicina y políticas sanitarias de la Universidad de Michigan. “Los riesgos tienden a ser menores para diferentes tipos de cáncer, y menos seguros y más variables. Puede que llegues a preguntarte: ‘¿Por qué tengo que saber esto?”.

Una vez diagnosticado el cáncer de mama, las pruebas genéticas pueden ayudar a tomar decisiones sobre el tipo de cirugía que se debe realizar; por ejemplo, un alto riesgo de recurrencia o un nuevo cáncer de mama puede hacer que algunas personas opten por una cirugía más extensa, como una doble mastectomía. Las pruebas también pueden proporcionar información importante a los miembros de la familia sobre su posible riesgo de cáncer.

(Este tipo de pruebas genéticas, llamadas “de línea germinal”, examina las mutaciones en los genes que las personas heredan de sus padres. Es diferente de las pruebas genómicas de los tumores, que examinan genes o proteínas específicos de las células cancerosas y pueden ayudar a los médicos a entender el ritmo de división de las células cancerosas, por ejemplo, y la probabilidad de que el cáncer reaparezca).

Cada vez más, las pruebas genéticas de la línea germinal también pueden ayudar a orientar otras decisiones de tratamiento. Algunas pacientes con cáncer de mama metastásico que presentan mutaciones en los genes BRCA1 o BRCA2 pueden ser buenas candidatas para los inhibidores de PARP, fármacos contra el cáncer que atacan a los tumores con mutaciones en esos genes.

Pero las pruebas genéticas que descubren mutaciones heredadas en muchos otros genes arrojan una información menos clara, aunque los resultados positivos pueden alarmar a las personas.

En el Memorial Sloan Kettering, los especialistas en cáncer se centran en la “capacidad de acción terapéutica”, afirmó Robson. ¿Ayudarán las pruebas a alguien a decidir si debe someterse a una doble mastectomía o le proporcionarán otra orientación importante? “Una política de pruebas para todo el mundo identificará muy pocas mutaciones mamarias BRCA adicionales, pero costará mucho”, añadió.

En consecuencia, los médicos debaten cuál es la mejor manera de desplegar e incorporar los nuevos conocimientos genéticos. Y las aseguradoras tratan de averiguar qué es lo que deben pagar.

Hay una subutilización de las pruebas que la ciencia dice que son relevantes y una sobreutilización de las pruebas que, según los expertos, proporcionan información que no puede interpretarse con ninguna certeza científica.

El resultado puede ser la confusión de las pacientes a las que se les acaba de diagnosticar un cáncer de mama, ya que se enfrentan a los gastos de las pruebas genéticas y, en ocasiones, a una escasa orientación sobre el tratamiento adecuado.

Algunos médicos afirman que el primer paso es asegurarse de que el pequeño grupo de personas que se beneficiaría claramente se someta a las pruebas genéticas cuyo significado se entiende con claridad. Solo el 15% de las pacientes con cáncer de mama que cumplían con las directrices de pruebas selectas de la NCCN para el cáncer hereditario recibieron pruebas genéticas, según un estudio de 2017 que examinó los datos de una encuesta nacional de salud entre 2005 y 2015.

“Yo diría que nuestro enfoque debe estar en las personas con alto riesgo de cáncer de mama que ni siquiera están identificadas todavía”, expresó la doctora Tuya Pal, directora para las disparidades de salud del cáncer en el Centro de Cáncer Vanderbilt-Ingram y vicepresidenta del panel de directrices de la NCCN para la evaluación genética/familiar de alto riesgo de cáncer de mama, ovario y páncreas.

Los pacientes pueden caer en el olvido porque nadie les dice que deben hacerse la prueba. En un análisis, el 56% de las pacientes con cáncer de mama de alto riesgo que no se sometieron a pruebas genéticas afirmaron que sus médicos no se lo recomendaron.

Incluso si los médicos recomiendan las pruebas genéticas, pueden carecer de la experiencia necesaria para determinar qué pruebas se necesitan y cómo interpretar los resultados. Esa es la función de los asesores genéticos, pero no hay muchos disponibles.

Las consecuencias pueden ser graves. En un estudio de 666 pacientes con cáncer de mama que se sometieron a pruebas genéticas, la mitad de las que tenían un riesgo medio de padecer un cáncer hereditario se sometieron a una doble mastectomía por haber encontrado “variantes de significado incierto“, que no requieren acción clínica. Hasta la mitad de los cirujanos informaron de que trataban a estas pacientes del mismo modo que a las que tenían mutaciones cancerígenas.

“El grueso de nuestra investigación diría que aún hay margen de mejora en lo que respecta a que los médicos obtengan la formación que necesitan”, afirmó la doctora Allison Kurian, directora del programa de genética clínica del cáncer femenino de la Universidad de Stanford y coautora del estudio.

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.

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La leche de fórmula puede ser adecuada para los bebés, pero expertos advierten que los niños pequeños no la necesitan

Kaiser Health News:Health Industry - September 21, 2022

Las fórmulas para niños pequeños son un negocio floreciente en Estados Unidos: las ventas de estas bebidas se han duplicado con creces en los últimos años, ya que las empresas han convencido a los padres de que sus hijos necesitan ese refuerzo. Muchos expertos, sin embargo, advierten que estos productos, diseñados para niños de 1 a 3 años, no cubren las necesidades nutricionales más allá de lo que ofrece la dieta típica de un niño pequeño, están sujetos a menos regulaciones que los preparados para lactantes y son caros.

Además, algunos padres alimentan a los bebés con las versiones para niños pequeños, a pesar de que no cumplen con las normas federales para las fórmulas para lactantes y pueden no proporcionar a los bebés los nutrientes adecuados para mantener su crecimiento.

Los pediatras y funcionarios federales de salud señalan que cuando la mayoría de los niños cumple un año, pueden comenzar a beber leche de vaca o un sustituto de la leche a base de plantas sin azúcar. En una declaración de “consenso” de 2019, la Academia Americana de Pediatría y otras organizaciones de salud y nutrición recomendaron no usar fórmulas para niños pequeños, al indicar que “no ofrecen ningún valor nutricional único más allá de lo que se podría obtener con alimentos saludables; además, pueden aportar azúcares añadidos a la dieta.” Las fórmulas para niños pequeños suelen contener edulcorantes y grasas que añaden calorías.

Algunas de las mismas empresas que producen fórmulas para lactantes —como Enfamil, Gerber y Similac— también fabrican fórmulas para niños pequeños, al igual que algunas marcas más pequeñas y de boutique que anuncian que tienen cualidades orgánicas u otras cualidades especiales. Las fórmulas para niños pequeños están disponibles en casi todos los lugares en los que se venden fórmulas para bebés y se promocionan como productos que aportan nutrientes adicionales para ayudar al desarrollo del cerebro, el sistema inmunitario y los ojos de los niños, entre otros beneficios. Son diferentes de las fórmulas médicas prescritas para niños con necesidades específicas.

Un estudio realizado en 2020 reveló que las ventas de fórmulas para niños pequeños en Estados Unidos aumentaron a 92 millones de dólares en 2015, frente a los 39 millones de 2006.

Los padres suelen confundirse con el marketing de las fórmulas, según un estudio dirigido por Jennifer Harris, investigadora de marketing y salud pública de la Universidad de Connecticut. La investigadora descubrió que el 60% de los cuidadores creía falsamente que las fórmulas para niños pequeños tienen nutrientes que no pueden obtener de otros alimentos.

El doctor Anthony Porto, gastroenterólogo pediátrico y profesor de pediatría de la Universidad de Yale, afirmó que le preocupa que estos productos puedan aportar a los niños pequeños más nutrientes y calorías de los que necesitan. A diferencia de lo que se diseña para los bebés, la fórmula para niños pequeños no tiene normas nutricionales: los expertos afirman que es imposible estandarizar un suplemento para la dieta de los niños pequeños porque no hay dos niños iguales.

En los grupos de discusión, dijo Harris, los padres dicen que alimentan a sus hijos con leche de fórmula para llenar las lagunas nutricionales cuando un niño no está comiendo lo suficiente, una preocupación común entre los padres.

“Los bebés suelen ser comedores voraces”, dijo el doctor Stephen Daniels, presidente de pediatría del Hospital Infantil de Colorado. Pero alrededor del primer año de edad, el crecimiento de los niños se estanca, dijo, y “de repente ya no tienen el hambre de antes”. Eso puede preocupar a los padres, añadió, pero “es un fenómeno completamente normal”.

Si los padres tienen dudas sobre la dieta de sus hijos, dijo Daniels, deben consultar a un pediatra o a un médico de familia.

Blanche Lincoln, presidenta del Infant Nutrition Council of America, que representa a los fabricantes de Enfamil, Gerber, Similac y las marcas blancas, dijo en un correo electrónico que las fórmulas para niños pequeños pueden ser útiles porque pueden llenar “las brechas nutricionales durante este período de transición a los alimentos de mesa”. Lincoln, una exsenadora de Arkansas, dijo que las bebidas “ayudan a contribuir a las necesidades nutricionales específicas de los niños pequeños, proporcionando energía y nutrientes importantes, así como vitaminas y minerales esenciales durante este importante período de crecimiento y desarrollo”.

Pero la leche de fórmula para niños pequeños no solo la ingieren ellos, sino también los bebés.

En un estudio reciente, Porto y sus colegas descubrieron que el 5% de los padres de los lactantes declaró haber dado a sus bebés bebidas promocionadas para el grupo de mayor edad. Y la investigación de Harris indicó que el 22% de los padres de bebés mayores de 6 meses había alimentado a sus bebés con leche de fórmula para niños pequeños en el mes anterior. Ambos estudios se realizaron antes de la reciente escasez de fórmula, lo que puede haber agravado el problema.

“Las fórmulas para lactantes y las fórmulas para niños pequeños suelen estar una al lado de la otra en el supermercado”, explica Harris. “Se parecen, pero las fórmulas para niños pequeños son más baratas que las fórmulas para bebés. Así que la gente las confunde y coge la que no es. O piensan: ‘Oh, esta es más barata. Voy a comprar esta”.

Según un correo electrónico de la portavoz de la FDA, Lindsay Haake, las bebidas para niños pequeños no se ajustan a la definición de fórmula infantil, por lo que no están sujetas a los mismos requisitos. Eso significa que no tienen que someterse a los ensayos clínicos y a las pruebas de seguridad de patógenos que hacen las versiones para bebés. “A diferencia de los preparados para lactantes, los preparados para niños pequeños no son necesarios para satisfacer las necesidades nutricionales de los consumidores a los que van destinados”, dijo Haake.

En una declaración a KHN, el Infant Nutrition Council of America dijo: “Las bebidas para niños pequeños tienen un uso y una composición nutricional distintos a los de la fórmula infantil; ambos no son intercambiables. El etiquetado de las bebidas nutricionales para niños pequeños identifica explícitamente el producto como una bebida para niños pequeños destinada a niños de 12 meses o más en la parte delantera de la etiqueta del envase”.

Sin embargo, varias marcas caras de fórmulas para niños pequeños hechas por empresas más pequeñas -que a menudo se anuncian como elaborados con leche de cabra, leche entera A2 (que carece de una proteína láctea común) o ingredientes veganos que no son de soja-, sí cumplen los requisitos nutricionales para los bebés, y algunos lo anuncian.

Harris argumentó que esto también confunde a los padres y no debería permitirse. El hecho de que una fórmula para niños pequeños tenga los ingredientes nutricionales exigidos por la FDA para las fórmulas infantiles no significa que haya cumplido con las demás pruebas exigidas a las fórmulas infantiles, dijo.

Los reguladores federales no han obligado a ninguna de las empresas a retirar esos productos. En un correo electrónico, la portavoz de la FDA, Marianna Naum, dijo: “La FDA no comenta sobre posibles acciones para hacer cumplir (la ley)”.

Una empresa, Nature ‘s One, cuyas fórmulas para niños pequeños se llaman “Baby’s Only”, recibió cartas de advertencia hace una década de la FDA sobre el hecho de que las promocionara para bebés. Ese caso se cerró en 2016. El sitio web de la compañía dice que la fórmula Baby’s Only “cumple con los requisitos de nutrientes para bebés” y que “Baby’s Only Organic® puede servirse hasta los 3 años de edad“. Sus detractores dicen que ese lenguaje implica que la fórmula está bien para los bebés menores de 1 año. El sitio web de la compañía y su cuenta de Instagram tienen testimonios de padres que indican que alimentan a sus bebés con la fórmula, así como fotos de bebés bebiéndola.

Jay Highman, director general y presidente de Nature’s One, dijo que Baby’s Only está claramente etiquetada como una fórmula para niños pequeños y que en la parte posterior de la lata se indica que “Baby’s Only está destinada a un niño pequeño de 1 año de edad o más o cuando lo indique un profesional de la salud.” También dijo que desde el lanzamiento de la empresa en 1999, sus fórmulas han cumplido todas las normas nutricionales, de fabricación y de seguridad exigidas a las fórmulas infantiles, aunque no tengan que hacerlo. “Nos comportamos como si fuéramos una fórmula para bebés, pero la vendíamos como una fórmula para niños pequeños”, dijo Highman.

Dijo que los ensayos clínicos exigidos por la FDA son una gran barrera para sacar al mercado una nueva fórmula infantil y que muchos otros países no exigen un ensayo clínico. Baby’s Only ha completado recientemente un ensayo clínico, dijo, y la empresa espera poder venderlo pronto como fórmula infantil.

Sin embargo, los pediatras y los expertos en nutrición siguen advirtiendo a los padres sobre el uso de las bebidas para niños pequeños. “No hay duda de que las fórmulas para lactantes son muy importantes durante el primer año de vida”, afirma Daniels. Pero no recomienda la versión para niños pequeños “porque no es tan útil, porque es confusa, porque es cara”.

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.

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Covid Still Kills, but the Demographics of Its Victims Are Shifting

Kaiser Health News:States - September 21, 2022

As California settles into a third year of pandemic, covid-19 continues to pose a serious threat of death. But the number of people dying — and the demographics of those falling victim — has shifted notably from the first two years.

Given the collective immunity people have garnered through a combination of mass vaccination and protections built from earlier infections, Californians overall were far less likely to die from covid in 2022, when the omicron variant dominated, than during the first two years of the pandemic, when other variants were largely at play, amplifying a national trend.

Still, each week, the virus is killing hundreds of Californians, hitting hardest among the unvaccinated. The virus remained among the state’s leading causes of death in July, trailing heart disease, cancer, stroke, and Alzheimer’s disease but outpacing diabetes, accidental death, and a host of other debilitating diseases. In the first seven months of the year, about 13,500 California residents died of covid, according to preliminary death certificate data from the state Department of Public Health. By comparison, the virus killed about 31,400 people in 2020 and almost 44,000 in 2021.

From April 2020 through December 2021, covid killed an average of 3,600 people a month, making it the third-leading cause of death in the state cumulatively for that time period, behind heart disease and cancer. From December 2020 through February 2021, it briefly overtook heart disease as the leading cause of death, taking the lives of more than 38,300 Californians in just three months. During its most recent peak, in January 2022, covid took about 5,900 lives.

Covid fell out of the top 10 causes of death for a brief period in the spring only to reenter this summer as the omicron variant continued to mutate. In July, even with more than 70% of Californians fully vaccinated, covid was the fifth-leading cause of death, cutting short more than 1,000 lives, state data show.

Clearly vaccinations made a difference. Covid death rates fell in recent months as covid shots and prior infections afforded much of the population significant protection against severe illness, said Dr. Timothy Brewer, a professor of medicine and epidemiology at UCLA. Brewer said the omicron variant, while more transmissible than earlier strains, appears to be a milder version of the virus. Research into that question is ongoing, but preliminary data suggests omicron is less likely to cause serious disease and death, according to the Centers for Disease Control and Prevention, which also notes that the severity of symptoms can be affected by vaccination status, age, and other health conditions.

The decline in deaths was particularly striking among California’s Latino population.

In 2020 and 2021, Latino residents accounted for 47% of covid deaths in California — about 35,400 deaths — although they make up 40% of the state’s population. By comparison, Latinos accounted for 34% of covid deaths from January through July 2022, according to state data. That translates to about 4,600 deaths.

Conversely, the proportion of covid deaths involving white residents increased from 32% in the first two years of the pandemic to 44% in the first seven months of 2022. That equates to 24,400 deaths involving white residents in 2020-21 and about 6,000 deaths in the first seven months of 2022. White people make up about 35% of the state’s population.

Researchers point to several factors in the shift. During the first two years of the pandemic, large numbers of the workers deemed essential, who continued to report to job sites in person, were Latino, while white residents were more likely to be employed in occupations that allowed them to work from home, U.S. Census Bureau surveys show.

“They just got exposed more,” said Dr. George Rutherford, a professor of epidemiology and biostatistics at the University of California-San Francisco. “They're doing essential jobs and had to leave the house and go to work.”

An imbalance in remote work remains, census data shows, but today the large majority of both Latino and white workers in California are reporting to work in person.

Seciah Aquino, deputy director of the Latino Coalition for a Healthy California, said efforts to make sure that testing, treatment, and vaccinations were available to underserved communities of color also had an impact. And because Latino communities were hit so hard during the pandemic, she said, many California Latinos are still wearing masks. “They are still making sure that they're staying home if they're sick,” she said. “They're still abiding by those policies even if the greater narrative is changing.”

Age is also a key factor in the demographic shifts, Brewer said.

Californians age 75 and older made up 53% of covid deaths through July in 2022, up from 46% in 2020 and 2021. Only about 6% of the state’s residents are 75 and older. And white Californians 75 and older outnumber Latinos in that age group about 3 to 1.

In the initial vaccination rollout, California prioritized seniors, first responders, and other essential workers, and for several months in 2021 older residents were much more likely to be vaccinated than younger Californians.

“Now, the vaccination rates have caught up pretty much with everybody except for kids, people under 18,” Brewer said. “You're seeing it go back to what we saw before, which is that age remains the most important risk factor for death.”

More than 86% of Californians age 65 and older have completed their primary covid shot series. But the protection afforded by vaccines wanes over time, and since many seniors got their shots early, enough time passed between their second shot and the omicron wave of early 2022 to leave them vulnerable. About one-third of Californians 65 and older had not received a booster by early 2022, when the omicron wave peaked, and about one-quarter still haven’t received a booster.

Geographic shifts in covid prevalence have occurred throughout the pandemic: Outbreaks hit one area while another is spared, and then another community serves as the epicenter a few months later.

Residents of the San Francisco-Oakland metro area accounted for 7.8% of the state’s deaths in 2022, through early September, up from 5.4% in 2020-21. The area is home to about 12% of the state’s residents. The Sacramento metro area has also accounted for a higher share of covid deaths this year: 6% in 2022 versus 4.5% in 2020-21.

At the same time, Los Angeles-Long Beach-Anaheim metro residents made up 42% of covid deaths in 2022, down slightly from 43% in 2020-21. The area is home to about 33% of the state’s residents. A similar dip happened in the nearby Riverside-San Bernardino metro area.

Again, age could be a factor in the geographic shifts. A higher proportion of residents in San Francisco and Sacramento are 75 and older than in Los Angeles and Riverside, census data show.

It’s unclear whether this shift will last. As the Los Angeles Times reported, covid deaths grew at a faster pace in July in L.A. County than they did in the Bay Area.

The data also shows that vaccination remains one of the strongest deterrents to death from covid. From January through July, unvaccinated Californians died at roughly five times the rate as vaccinated Californians. But the gap has narrowed. From April through December 2021, California's unvaccinated residents died, on average, at around 10 times the rate of vaccinated Californians.

Brewer said the gap lessened because the omicron variant was more likely than earlier variants to “break through” and cause infection in vaccinated Californians. The omicron variant, while less deadly, also infected many more people than earlier variants.

This trend, too, may prove short-lived: The next generation of covid booster shots are rolling out across the state.

Phillip Reese is a data reporting specialist and an assistant professor of journalism at California State University-Sacramento.

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

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.

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