The Department of Veterans Affairs has long given Vietnam veterans disability compensation for illness connected to Agent Orange, widely used to defoliate Southeast Asian battlefields during the U.S. war.

Less well known: The powerful herbicide combination was also routinely used to kill weeds at domestic military bases. Those exposed to the chemicals at the bases are still waiting for the same benefits and, in some cases, are hitting a familiar obstacle — government opacity.

In February, VA proposed a rule that for the first time would allow compensation for Agent Orange exposure at 17 U.S. bases in a dozen states where the herbicide was tested, used or stored.

But the list excludes about four dozen bases where Pat Elder, an activist and director of the environmental advocacy group Military Poisons, says he’s documented the use or storage of Agent Orange. Among them is Fort Ord, a former Army base in Monterey County, Calif. Documents gathered by Elder and others, including a report by an Army agronomist, a journal article and records related to hazardous material cleanups, establish the use of Agent Orange at the facility.

“In training areas, such as Fort Ord, where poison oak has been extremely troublesome to military personnel, a well-organized chemical war has been waged against this woody plant pest,” reads a 1956 article in the journal the Military Engineer.

“Until Fort Ord is recognized by VA as a presumptive site, it’s probably going to be a long, difficult struggle to get some kind of compensation,” said Mike Duris, a veteran who trained at the base and was later diagnosed with prostate cancer.

VA considers prostate cancer a “presumptive condition” for Agent Orange disability compensation, meaning the agency presumes the illness is linked to exposure to the chemical. It acknowledges that those who served in specific locations were likely exposed and their illnesses are tied to military service. The designation expedites affected veterans’ disability claims.

Agent Orange is a 50-50 mixture of two chemicals known as 2,4-D and 2,4,5-T. Herbicides with the same chemical structure, although slightly modified, were widely available in the 1950s and ‘60s, sold commercially and used on practically every base in the United States, said Gerson Smoger, a lawyer who argued before the Supreme Court for Vietnam veterans to have the right to sue Agent Orange manufacturers.

2,4,5-T contains the dioxin TCDD, a known carcinogen linked to a number of cancers, chronic conditions and birth defects. The Environmental Protection Agency banned the use of 2,4,5-T in the United States in 1979.

VA says it based its proposed rule on information provided by the Defense Department, and that the Pentagon’s review “found no documentation of herbicide use, testing or storage at Fort Ord.”

Patricia Kime contributed reporting.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

MEMPHIS, Tenn. — For many years, Rose Sims had no idea what was going on inside a nondescript brick building on Florida Street a couple of miles from her modest one-story home on the southwestern side of town.

Like other residents, she got an unwelcome surprise in October 2022 at a public forum held by the Environmental Protection Agency at the historic Monumental Baptist Church, known for its role in the civil rights movement. The EPA notified the predominantly Black community that Sterilization Services of Tennessee —which began operations in the brick building in the 1970s — had been emitting unacceptably high levels of ethylene oxide, a toxic gas commonly used to disinfect medical devices.

Airborne emissions of the colorless gas can increase the risk of certain medical conditions, including breast cancer. Sims, who is 59 and Black, said she developed breast cancer in 2019, despite having no family history of it, and she suspects ethylene oxide was a contributing factor.

“I used to be outside a lot. I was in good health. All of a sudden, I got breast cancer,” she said.

Local advocates say the emissions are part of a pattern of environmental racism. The term is often applied when areas populated primarily by racial and ethnic minorities and members of low-socioeconomic backgrounds, like southwest Memphis, are burdened with a disproportionate amount of health hazards.

The drivers of environmental racism include the promise of tax breaks for industry to locate a facility in a heavily minority community, said Malini Ranganathan, an urban geographer at American University in Washington, D.C. The cheaper cost of land also is a factor, as is the concept of NIMBY — or “not in my backyard” — in which power brokers steer possible polluters to poorer areas of cities.

A manager at Sterilization Services’ corporate office in Richmond, Virginia, declined to answer questions from KFF Health News. An attorney with Leitner, Williams, Dooley & Napolitan, a law firm that represents the company, also declined to comment. Sterilization Services, in a legal filing asking for an ethylene oxide-related lawsuit to be dismissed, said the use of the gas, which sterilizes about half the medical devices in the U.S., is highly regulated to ensure public safety.

Besides southwest Memphis, there are nearly two dozen locales, mostly small cities — from Athens, Texas, to Groveland, Florida, and Ardmore, Oklahoma — where the EPA said in 2022 that plants sterilizing medical devices emit the gas at unusually high levels, potentially increasing a person’s risk of developing cancer.

The pollution issue is so bad in southwest Memphis that even though Sterilization Services planned to close shop by April 30, local community leaders have been hesitant to celebrate. In a letter last year to a local Congress member, the company said it has always complied with federal, state, and local regulations. The reason for its closure, it said, was a problem with renewing the building lease.

But many residents see it as just one small win in a bigger battle over environmental safety in the neighborhood.

“It’s still a cesspool of pollution,’’ said Yolonda Spinks, of the environmental advocacy organization Memphis Community Against Pollution, about a host of hazards the community faces.

The air in this part of the city has long been considered dangerous. An oil refinery spews a steady plume of white smoke. A coal plant has leaked ash into the ground and the groundwater. The coal plant was replaced by a natural gas power plant, and now the Tennessee Valley Authority, which provides electricity for local power companies, plans to build a new gas plant there. A continual stream of heavy trucks chug along nearby highways and roads. Other transportation sources of air pollution include the Memphis International Airport and barge traffic on the nearby Mississippi River.

Lead contamination is also a concern, not just in drinking water but in the soil from now-closed lead smelters, said Chunrong Jia, a professor of environmental health at the University of Memphis. Almost all the heavy industry in Shelby County — and the associated pollutants — are located in southwest Memphis, Jia added.

Sources of pollution are often “clustered in particular communities,” said Darya Minovi, a senior analyst with the Union of Concerned Scientists, a nonprofit that advocates for environmental justice. When it comes to sterilizing facilities that emit ethylene oxide, areas inhabited largely by Black, Hispanic, low-income, and non-English-speaking people are disproportionately exposed, the group has found.

Four sites that the EPA labeled high-risk are in low-income areas of Puerto Rico. Seven sterilizer plants operate in that U.S. territory.

The EPA, responding to public concerns and to deepened scientific understanding of the hazards of ethylene oxide, recently released rules that the agency said would greatly reduce emissions of the toxic gas from sterilizing facilities.

KeShaun Pearson, who was born and raised in south Memphis and has been active in fighting environmental threats, said he is frustrated that companies with dangerous emissions are allowed to create “toxic soup” in minority communities.

In the area where the sterilization plant is located, 87% of the residents are people of color, and, according to the Southern Environmental Law Center, life expectancy there is about 10 years lower than the average for the county and state. The population within 5 miles of the sterilizer plant is mostly low-income, according to the Union of Concerned Scientists.

Pearson was part of Memphis Community Against the Pipeline, a group formed in 2020 to stop a crude oil pipeline that would have run through Boxtown, a neighborhood established by emancipated slaves and freedmen after the signing of the Emancipation Proclamation of 1863.

That campaign, which received public support from former Vice President Al Gore and actress-activist Jane Fonda, succeeded. After the ethylene oxide danger surfaced in 2022, the group changed the last word of its name from “pipeline” to “pollution.”

Besides breast and lymphoid cancers, animal studies have linked inhaling the gas to tumors of the brain, lungs, connective tissue, uterus, and mammary glands.

Last year, with the help of the Southern Environmental Law Center, the south Memphis community group urged the Shelby County Health Department to declare the ethylene oxide situation a public health emergency and shut down the sterilizing plant. But the health department said the company had complied with its existing air permit and with the EPA’s rules and regulations.

A health department spokesperson, Joan Carr, said Shelby County enforces EPA regulations to ensure that companies comply with the federal Clean Air Act and that the agency has five air monitoring stations around the county to detect levels of other pollutants.

When the county and the Tennessee Department of Health did a cancer cluster study in 2023, the agencies found no evidence of the clustering of high rates of leukemia, non-Hodgkin lymphoma, or breast or stomach cancer near the facility. There were “hot and cold spots” of breast cancer found, but the study said it could not conclude that the clusters were linked to the facility.

Scientists have criticized the study’s methodology, saying it did not follow the Centers for Disease Control and Prevention’s recommendations for designing a cancer cluster investigation.

Meanwhile, several people have sued the sterilizing company, claiming their health has been affected by the ethylene oxide emissions. In a lawsuit seeking class-action status, Reginaé Kendrick, 21, said she was diagnosed with a brain tumor at age 6. Chemotherapy and radiation have stunted her growth, destroyed her hair follicles, and prevented her from going through puberty, said her mother, Robbie Kendrick.

In response to proposed stricter EPA regulations, meanwhile, the Tennessee attorney general helped lead 19 other state AGs in urging the agency to “forgo or defer regulating the use of EtO by commercial sterilizers.”

Sims said she’s glad her neighborhood will have one less thing to worry about once Sterilization Services departs. But her feelings about the closure remain tempered.

“Hope they don’t go to another residential area,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Cass Smith-Collins jumped through hoops to get the surgery that would match his chest to his gender.

Living in Las Vegas and then 50, he finally felt safe enough to come out as a transgender man. He had his wife’s support and a doctor’s letter showing he had a long history of gender dysphoria, the psychological distress felt when one’s sex assigned at birth and gender identity don’t match.

Although in-network providers were available, Smith-Collins selected Florida-based surgeon Charles Garramone, who markets himself as an early developer of female-to-male top surgery and says that he does not contract with insurance. Smith-Collins said he was willing to pay more to go out-of-network.

“I had one shot to get the chest that I should have been born with, and I wasn’t going to chance it to someone who was not an expert at his craft,” he said.

Smith-Collins arranged to spend a week in Florida and contacted friends there who could help him recover from the outpatient procedure, he said.

Garramone’s practice required that the patient agree to its financial policies, according to documents shared by Smith-Collins. One document stated that “full payment” of Garramone’s surgical fees is required four weeks in advance of surgery and that all payments to the practice are “non-refundable.”

Smith-Collins said he and his wife dipped into their retirement savings to cover the approximately $14,000 upfront. With prior authorization from his insurer in hand saying the procedure would be “covered,” he thought his insurance would reimburse anything he paid beyond his out-of-pocket maximum for out-of-network care: $6,900.

The day before surgery, Smith-Collins signed another agreement from the surgeon’s practice, outlining how it would file an out-of-network claim with his insurance. Any insurance payment would be received by the doctor, it said.

The procedure went well. Smith-Collins went home happy and relieved.

Then the bill came. Or in this case: The reimbursement didn’t.

The Patient: Cass Smith-Collins, now 52, who has employer-based coverage through UnitedHealthcare.

Medical Services: Double-incision top surgery with nipple grafts, plus lab work.

Service Provider: Aesthetic Plastic Surgery Institute, doing business as The Garramone Center, which is owned by Garramone, according to Florida public records.

Total Bill: The surgeon’s practice billed the patient and insurance a total of $120,987 for his work. It charged the patient about $14,000 upfront — which included $300 for lab work and a $1,000 reservation fee — and then billed the patient’s insurer an additional $106,687.

The surgeon later wrote the patient that the upfront fee was for the “cosmetic” portion of the surgery, while the insurance charge was for the “reconstructive” part. Initially, the insurer paid $2,193.54 toward the surgeon’s claim, and the patient received no reimbursement.

After KFF Health News began reporting this story, the insurer reprocessed the surgeon’s claim and increased its payment to the practice to $97,738.46. Smith-Collins then received a reimbursement from Garramone of $7,245.

What Gives: Many patients write to Bill of the Month each year with their own tangled billing question. In many cases — including this one — the short answer is that the patient misunderstood their insurance coverage.

Smith-Collins was in a confusing situation. UnitedHealthcare said his out-of-network surgery would be “covered,” then it later told Smith-Collins it didn’t owe the reimbursement he had counted on. Then, after KFF Health News began reporting, he received a reimbursement.

Adding to the confusion were the practice’s financial polices, which set a pre-surgery payment deadline, gave the doctor control of any insurance payment, and left the patient vulnerable to more bills (though, fortunately, he received none).

Agreeing to an out-of-network provider’s own financial policy — which generally protects its ability to get paid and may be littered with confusing insurance and legal jargon — can create a binding contract that leaves a patient owing. In short, it can put the doctor in the driver’s seat, steering the money.

The agreement Smith-Collins signed the day before surgery says that the patient understands he is receiving out-of-network care and “may be responsible for additional costs for all services provided” by the out-of-network practice.

Federal billing protections shield patients from big, out-of-network bills — but not in cases in which the patient knowingly chose out-of-network care. Smith-Collins could have been on the hook for the difference between what his out-of-network doctor and insurer said the procedure should cost: nearly $102,000.

Emails show Smith-Collins had a couple of weeks to review a version of the practice’s out-of-network agreement before he signed it. But he said he likely hadn’t read the entire document because he was focused on his surgery and willing to agree to just about anything to get it.

“Surgery is an emotional experience for anyone, and that’s not an ideal time for anyone to sign a complex legal agreement,” said Marianne Udow-Phillips, a health policy instructor at the University of Michigan School of Public Health.

Udow-Phillips, who reviewed the agreement, said it includes complicated terms that could confuse consumers.

Another provision in the agreement says the surgeon’s upfront charges are “a separate fee that is not related to charges made to your insurance.”

Months after his procedure, having received no reimbursement, Smith-Collins contacted his surgeon, he said. Garramone replied to him in an email, explaining that UnitedHealthcare had paid for the “reconstructive aspect of the surgery” — while the thousands of dollars Smith-Collins paid upfront was for the “cosmetic portion.”

Filing an insurance claim had initially led to a payment for Garramone, but no refund for Smith-Collins.

Garramone did not respond to questions from KFF Health News for this article or to repeated requests for an interview.

Smith-Collins had miscalculated how much his insurance would pay for an out-of-network surgeon.

Documents show that before the procedure Smith-Collins received a receipt from Garramone’s practice marked “final payment” with a zero balance due, as well as prior authorization from UnitedHealthcare stating that the surgery performed by Garramone would be “covered.”

More from Bill of the Month

• A Mom’s $97,000 Question: How Was Her Baby’s Air-Ambulance Ride Not Medically Necessary? Mar 25, 2024
• Without Medicare Part B’s Shield, Patient’s Family Owes $81,000 for a Single Air-Ambulance Flight Feb 27, 2024
• The Colonoscopies Were Free. But the ‘Surgical Trays’ Came With $600 Price Tags. Jan 25, 2024

Read more

But out-of-network providers aren’t limited in what they can charge, and insurers don’t have a minimum they must pay.

An explanation of benefits, or EOB, statement shows Garramone submitted a claim to UnitedHealthcare for more than $106,000. Of that, UnitedHealthcare determined the maximum it would pay — known as the “allowed amount” — was about $4,400. A UnitedHealthcare representative later told Smith-Collins in an email that the total was based on what Medicare would have paid for the procedure.

Smith-Collins’ upfront charges of roughly $14,000 went well beyond the price the insurer deemed fair, and UnitedHealthcare wasn’t going to pay the difference. By UnitedHealthcare’s math, Smith-Collins’ share of its allowed amount was about $2,200, which is what counted toward his out-of-pocket costs. That meant, in the insurer’s eyes, Smith-Collins still hadn’t reached his $6,900 maximum for the year, so no refund.

Neither UnitedHealthcare nor the surgeon provided KFF Health News with billing codes, making it difficult to compare the surgeon’s charges to cost estimates for the procedure.

Garramone’s website says his fee varies depending on the size and difficulty of the procedure. The site says his prices reflect his experience and adds that “cheaper” may lead to “very poor results.”

Though he spent more than he expected, Smith-Collins said he’ll never regret the procedure. He said he had lived with thoughts of suicide since youth, having realized at a young age that his body didn’t match his identity and feared others would target him for being trans.

“It was a lifesaving thing,” he said. “I jumped through whatever hoops they wanted me to go through so I could get that surgery, so that I could finally be who I was.”

The Resolution: Smith-Collins submitted two appeals with his insurer, asking UnitedHealthcare to reimburse him for what he spent beyond his out-of-pocket maximum. The insurer denied both appeals, finding its payments were correct based on the terms of his plan, and said his case was not eligible for a third, outside review.

But after being contacted by KFF Health News, UnitedHealthcare reprocessed Garramone’s roughly $106,000 claim and increased its payment to the practice to $97,738.46.

Maria Gordon Shydlo, a UnitedHealthcare spokesperson, told KFF Health News the company’s initial determination was correct, but that it had reprocessed the claim so that Smith-Collins is “only” responsible for his patient share: $6,755.

“We are disappointed that this non-contracted provider elected to charge the member so much,” she said.

After that new payment, Garramone gave Smith-Collins a $7,245 refund in mid-April.

The Takeaway: Udow-Phillips, who worked in health insurance for decades and led provider services for Blue Cross Blue Shield of Michigan, said she had never seen a provider agreement like the one Smith-Collins signed.

Patients should consult a lawyer before signing any out-of-network agreements, she said, and they should make sure they understand prior authorization letters from insurers.

The prior authorization Smith-Collins received “doesn’t say covered in full, and it doesn’t say covered at what rate,” Udow-Phillips said, adding later, “I am sure [Smith-Collins] thought the prior authorization was for the cost of the procedure.”

Patients can seek in-network care to feel more secure about what insurance will cover and what their doctors might charge.

But for those who have a specific out-of-network doctor in mind, there are ways to try to avoid sticker shock, said Sabrina Corlette, a research professor and co-director of the Center on Health Insurance Reforms at Georgetown University:

• Patients should always ask insurers to define what “covered” means, specifically whether that means payment in full and for what expenses. And before making an upfront payment, patients should ask their insurer how much of that total it would reimburse.
• Patients also can ask their provider to agree in advance to accept any insurance reimbursement as payment in full, though there’s no requirement that they do so.
• And patients can try asking their insurer to provide an exact dollar estimate for their out-of-pocket costs and ask if they are refundable should insurance pick up the tab.

Bill of the Month is a crowdsourced investigation by KFF Health News 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!

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

When Change Healthcare, a subsidiary of UnitedHealth Group, got hit by a cyberattack this winter, a big chunk of the nation’s doctors, pharmacists, hospitals, and therapists stopped getting paid. The hack also limited health providers’ ability to share medical records and other information critical to patient care.

The cyberattack revealed an often overlooked part of how health care is paid for in the United States and raised concerns for antitrust advocates about how large UnitedHealth has grown.

Host Dan Weissmann speaks with reporters Brittany Trang of Stat News and Maureen Tkacik of The American Prospect about their reporting on the hack and what it says about antitrust enforcement of health care companies.

Dan Weissmann @danweissmann Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting. Credits Emily Pisacreta Producer Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: The Hack

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there. 

Brittany Trang is a reporter at STAT News– that’s a health care news outlet. We talked with Brittany’s colleague Bob Herman in our last episode. Like Bob, she’s been covering the business of health care. 

And for Brittany, this story starts with Bob flagging a story to their team. He… 

Brittany Trang: Dropped a link in the chat that said like, hey guys, I think we should write about this, question mark, and nobody replied, 

Dan: The story was about a cyber-attack against a company called Change Healthcare. 

Brittany Trang: I was like that sounds like a startup and I was like who cares about some sort of health tech startup 

Dan: But Bob kept bringing it up. 

Brittany Trang: And I finally clicked on the link, and I was like, oh no, this is a big deal. This touches most of the American healthcare system. 

Dan: Yeah, and it’s no joke. Change Healthcare is what’s called a data clearinghouse. And it’s a big one. It’s an important part of health care’s financial plumbing. Someone had gone in and basically hijacked their computer system and said, Unless we get $22 million dollars, we’re not giving it back. So Change went offline, and a huge chunk of the country’s Pharmacists, doctors, therapists, hospitals just stopped getting paid. And Change Healthcare stayed offline for weeks and weeks. As we record this, seven weeks in, big parts of it remain offline. And here’s this other thing: Change Healthcare is not a startup. It’s been around for like 20 years. And in late 2022, Change got purchased by another company– a company that’s starting to become a real recurring character on this show: UnitedHealth Group.

You may remember: They’re the country’s biggest insurance company AND they’ve got their hands in just about every other part of health care, in a big way. For instance, they’re the very biggest employer of physicians in the country, by a huge margin. They’ve got their own bank, which– among other things– offers payday loans to doctors. And they have a huge collection of companies that do back-end services. In our last episode we heard about Navi Health— and how, under United’s ownership, insurance companies have been using NaviHealth’s algorithm to cut off care for people in nursing homes. [Boy, yeah– that was a fun story…] And as we’ve been learning: When one company like this gets so big, their problems– like this cyber-attack– become everybody’s problem. And in this case, everybody’s problem seems to create an opportunity for United. We’ll break down how THAT could possibly work, but obviously it doesn’t seem like the way a lot of us would WANT things to work.. And we’ll end up talking about what we can maybe do about it. Not “we” as in a bunch of individuals trying to tackle an opponent this big. Good luck with that. But “we” as in the “We the people” of the United States Constitution. We may already be on the case. 

This is An Arm and a Leg– a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life, and bring you a show that’s entertaining, empowering, and useful. 

We’ll start with an attempt to answer what you’d think would be a simple question: What does Change Healthcare do?

Here’s Brittany Trang from STAT News again. 

Brittany Trang: It’s kind of like Visa or Mastercard or something. Like, when you go to the grocery store and you pay with a credit card, you are not putting your money directly into the pockets of the grocery store. There’s a middleman in there and change is that middleman, but for a ton of different things.

Dan: Like insurance claims. Brittany says hospitals and doctors offices often don’t submit claims directly to insurance companies. They send the claim to a middleman like Change. And then Change figures out where that claim needs to go next. Like: I’m sending a bunch of mail– I put it all in one mailbox, and the post office figures out how to get it where it goes. Except of course, there’s no paper here, no envelopes, no physical packages: All those claims are basically data. Which is why a company like Change is called a data clearinghouse. And even if a given provider uses some other clearinghouse– and of course there are others– Change may still be involved. Because INSURANCE companies like Aetna also use Change as a place to COLLECT claims from providers. On that side, Change is kind of like a post-office box. But claims are just one of the types of data that Change handles. For instance… 

Brittany Trang: when you went to the pharmacy counter or when you would check in at the doctor’s office and they take your insurance information and figure out like what you’re going to pay for this visit. Both of those processes were messed up. 

Dan: Yeah, and there’s more! Prior authorizations– like when your doctor checks in advance to make sure your insurance company is OK with paying for whatever. Those all go through companies like Change. So, if change is offline, do they do your MRI, or your surgery– and just hope it doesn’t get denied when Change comes back? And once claims get approved, data for payments goes through Change too. So payments– a lot of payments– just stopped going out. Here’s Brittany Trang. 

Brittany Trang: it’s just kind of flabbergasting how big this is. This collapsed most of healthcare in some way or another. 

Dan: Overall, the numbers are wild: Change reportedly processes 1.5 trillion dollars a year in claims. Maybe a third of everything that happens in healthcare. According to the American Hospital Association, 94 percent of hospitals said they were affected. Some more than others. Not all providers use Change as their primary clearinghouse. But lots do. And for them, everything just stopped. 

Brittany Trang: I talked to one provider she’s like, Oh, I can, I can talk. I’m, here today and tomorrow before we close. And I was like, before we close for spring break. And she said, no, we have 3 and 13 cents left in our bank account. Brittany says that provider got a last minute reprieve– an emergency loan from United. There have been two or three rounds of these loans so far, plus some advance payments from Medicare. But as the outage has dragged on– it started in February, and we’re recording this seven weeks later– it’s hard to know if those are going to be enough. At the end of March, I talked with Emily Benson. She runs a therapy practice in a Minneapolis suburb. Eight clinicians, mostly treating kids. She says the practice does maybe 70 or 80 thousand dollars worth of business a month. But then in February… Emily Benson: essentially everything went dark for us. 

Dan: United publicly acknowledged the Change hack on February 21st. But Emily Benson says she didn’t actually get a heads-up until almost a week later. 

Emily Benson: a lot of alarm bells went off, that was the end of the month. And so a lot of payments came due 

Dan: Her rent. Paychecks for her colleagues, and herself. 

Emily Benson: I mean, I was in a panic. Y’know, I didn’t know where I was going to go. 

Dan: She says she usually gets two payments a week from insurance, with everything passing through Change. But it’s not just the payments from insurance. Change also provides the documents that say how much an insurance company is GOING to pay for any given claim. 

Emily Benson: That’s a critical document because that tells me what does the family owe us. And then the beneficiary is also going to get that information. So they’re not surprised by what we charge them. So now every week we’re stacking up and stacking up these amounts that the family’s going to owe us. 

Dan: By the time we talked, Emily Benson had gotten two loans from United. About 40,000 each: maybe a month’s worth of billing for her, between the two loans. 

Emily Benson: That first one was wiped out. Pretty quickly because now we’re on week five I’m working on the second, um, installment that I got from united. But, you know, that’s half gone now too. So I don’t know what the next step is. We’re nowhere near. Getting claims processing yet and so. I’m kind of panicking Yeah. 

Emily Benson: it looks like the terms are within 45 days. You have to pay back that temporary loan. How am I going to do that if I don’t have claims coming? 

Dan: God. 

Emily Benson: I’m still panicking. 

Dan: I’ll bet. Oh my God. You’re very, you’re very calm for somebody in this situation. 

Emily Benson: Well, you know, I’ve had a lot of therapy of my own. That’s how you become a therapist. So panicking doesn’t help anyone. 

Dan: I guess that’s, I’ll take that under advisement. 

Dan: So, to pay back those loans– which are supposed to be repaid within 45 days– Emily Benson is gonna have to start getting paid again. As we spoke, she’d had been living without systems for filing claims and getting paid for five weeks. And even when those systems get moving again, she’s not gonna see all that money right away.

Emily Benson: Imagine the backlog and the clog. Five weeks worth of insurance claims I mean, we’re looking at a major traffic jam.

Dan: Oh myGod.Andif everybody were to work double time for the next five weeks, then it would be 10 weeks. But people can’t really work double time. 

Emily Benson: When you say that out loud, 

Dan: Sorry. 

Emily Benson: I don’t feel as grounded, 

Dan: I’m so sorry. 

Emily Benson: but, but, but it’s probably realistic. 

Dan: Other news outlets are talking to providers like Emily Benson all over the country. We’re recording this in mid-April. United hasn’t responded to our questions on this story, but their website says “We’re determined to make this right.” It says they’ve put out 4 point 7 billion dollars in emergency loans to providers so far. And it says that for the vast majority of Change Healthcare’s services, a restoration date is “still pending.” We have no idea what’s going to happen. What it’ll mean for our doctors, our therapists, our local hospitals. And look, there are elements of this story that go beyond health care. How many of us have personal health information– maybe financial information– that got seized by who the heck knows who in this? And yes, United’s getting some heat. They got a list of pointed questions from U.S. Representative Jamie Raskin. Their CEO is supposed to testify in a Senate hearing at the end of April. But as we’ll get into in a minute, this disaster– United’s disaster– could turn out to have a silver lining– for United: An opportunity to keep on growing. And that opportunity arises precisely because they’re so big, and doing so much business in so many parts of the medical-industrial complex. Which doesn’t sound great. It raises questions about the, uh, potential downsides for a lot of people, when individual companies get this freaking big. And it raises questions about what we can maybe do about it. And the answer is: Maybe more than we think. That’s all coming right up. 

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their reporters do amazing work, and we’re honored to be in cahoots with them. So, as we’ve seen, a company like United is so big that their problems become everybody’s problem. And at least in one case that I’ve seen so far, everybody’s problem can become United’s opportunity. That’s what happened in Oregon, and a reporter from Washington, DC, was in a position to make it a national story. 

Maureen Tkacik: My name is Maureen Tkacik, but you can call me Mo and I am the Investigations Editor at the American Prospect, and a Senior Fellow at the American Economic Liberties Project. 

Dan: The Prospect is a politically-progressive news magazine, and the Economic Liberties Project is a non-profit that pushes an anti-monopoly agenda. A lot of Mo’s reporting looks at how financial behemoths are looking like monopolists– especially in health care. So… 

Maureen Tkacik: have come to know United Healthcare, pretty well, over past, year or so, 

Dan: Looking at, for instance, how they gobble up medical practices. And as we mentioned, that kind of gobbling has made United the biggest employer of physicians in the country– by huge margins– in just the last few years. About one doc in ten now works for them, as employees or “affiliates.” As we’ve reported before, big players– like United, like big hospital systems, and like private equity groups– have been gobbling up medical practices for years. And: that kind of consolidation often leads to us paying more– and often for lousier healthcare. Moe Tkacik has been reporting on that kind of gobbling– and recently, she’d been looking at how the state of Oregon had been trying to slow it down. Then, in January 2024, a good-size medical group in Corvallis, Oregon said they were ready for United to gobble them up. The group is called the Corvallis Clinic, and it’s got more than a hundred docs. But United and the Clinic would have to go through a whole process to get approval from state regulators. That process includes: regulators asking the public for comments on the transaction. And in this case… 

Maureen Tkacik: they were. inundated with comments. 

Dan: Like 378 of them in just a few weeks. And the comments were overwhelmingly AGAINST the sale. In February, the regulators sent United and Corvallis a 5-page list of conditions under which they might approve a deal. A source of Moe’s sent me the document, which he got through a public-records request. The conditions are like, to not reduce service levels in the community for at least 10 years. To keep accepting non-United insurance. And to submit to a lot of monitoring. Then, as negotiations were starting, Change Healthcare went offline. And in early March, Moe got a tip: The clinic and United were gonna make an end run around this process. She talked with an anonymous insider at the clinic. Who told her: It turns out that all of the clinic’s billing had been connected to Change. 

Maureen Tkacik: So we’re talking about just a calamitous cash crunch. Their revenue came to a standstill 

Dan: And by the time Moe’s insider source learned what was up– this had been going on for two weeks. 

Maureen Tkacik: this source said that , Thursday, they all had a meeting and they were not sure they were going to be able to open their doors the following Monday. 

Dan: That was Thursday March 7. The next day, March 8th, lawyers for Corvallis Clinic filed an application for an emergency exemption from the normal review process. A week later, they got that exemption. And this time regulators had not demanded any conditions. As Moe’s story laid out, United’s problem– the Change Healthcare hack– became everybody’s problem, including Corvallis. And their problem seemed to have become United’s opportunity. To gobble up the practice without having to agree to any conditions from pesky regulators. And a postscript to the Corvallis Clinic story: Shortly after regulators approved that deal, United sent notices to thousands of patients at another clinic it had taken over in nearby Eugene, saying basically: We don’t have a doctor for you anymore. Goodbye and good luck. News reports said that clinic had lost more than 30 doctors since United took over. And among the public comments urging regulators to kibosh the Corvallis clinic, a bunch of people cited lousy experiences at that Eugene clinic under United’s ownership. This is the kind of thing that Moe Tkacik and her colleagues at the American Economic Liberties Project– and what’s become a kind of anti-monopoly movement– want to change. And here’s where this episode becomes maybe just a little less of a horror story, and maybe a little more of an action movie. Because the anti-monopoly movement has gotten a big backer in the last three years: The Biden Administration. In 2017, a woman named Lina Khan made a name for herself in legal circles when she published a paper arguing that Amazon had become the kind of super-dominant company that antitrust laws were designed to constrain. Lina Khan was a law student when she published that paper. In 2021, Joe Biden appointed her to lead the Federal Trade Commission. The FTC and the Department of Justice split the job of antitrust enforcement, and they’ve both become super-aggressive. They’ve filed big lawsuits against Google, Amazon, and– in March of this year– Apple. And gotten a fair amount of attention. As we were writing up this episode, Jon Stewart interviewed Lina Khan on “The Daily Show.” And here’s how she described her approach in that conversation. 

LK: We’ve really focused on how companies are behaving. Are they behaving in ways that suggest they can harm their customers, harm their suppliers, harm their workers, and get away with it? And that type of too big to care type approach is really what ends up signaling that a company has monopoly power because they can start mistreating you, but they know you’re stuck. 

Dan: Earlier this year, the Wall Street Journal reported that Lina Khan’s allies– antitrust folks at the Department of Justice are investigating United. Neither the Justice Department nor United has commented on that report. Meaning: Nobody’s denied it. So far, some of the Biden administration’s antitrust lawsuits have pan out, and some haven’t. Actually, in 2021, the Justice Department sued to prevent UnitedHealth Group from buying Change Healthcare. That one, they lost. But when the sued to block Penguin Random House from buying another giant publisher, Simon and Schuster, they won. And as Lina Khan told Jon Stewart, she and her colleagues aren’t just suing to prevent mergers. They sued to get infamous Pharma Bro Martin Skhreli banned for life from the pharma trade. And they won. And they’re looking at other ways big companies, especially in health care, screw people. 

LK: Just to give you one example, inhalers. They’ve been around for decades, but they still cost hundreds of dollars. So our staff took a close look and we’ve realized the, some of the patents that had been listed for these inhalers were improper. There were bogus. And so we sent hundreds of warning letters around these patents. And in the last few weeks, we’ve seen companies deal list these patents and three out of the four major manufacturers have now said, Within a couple of months, they’re going to cap how much Americans pay to just 35. 

Dan: I think we should start paying a lot more attention to what Lina Khan and her colleagues are up to– and what their chances are. I’ve started reading up, and getting in touch with folks who are in this fight, and who are watching it closely. Because this is looking like the kind of action movie I kind of like. Meanwhile, I’m posting a link to Jon Stewart’s interview with Lina Khan wherever you’re listening to this. I’ll have a few other links for you in our newsletter– you can sign up for that at arm and a leg show dot com, slash, newsletter. And I’ll catch you in a few weeks. Till then, take care of yourself. 

This episode of an arm and a leg was produced by me, Dan Weissmann, with help from Emily Pisacreta, and edited by Ellen Weiss. Big thanks this time to the novelist, journalist and activist Cory Doctorow, who has been writing about the antitrust revival for years, breaking down complex, technical stories in clear, accessible ways. Thanks to professor Spencer Waller from the Loyola University Chicago law school for talking about antitrust with me. And thanks to Dr. John Santa in Oregon– for sharing material he got via a public-records request to the state, and for his observations. Adam Raymonda is our audio wizard. Our music is by Dave Weiner and blue dot sessions. Extra music in this episode from Epidemic Sound. Gabrielle Healy is our managing editor for audience. She edits the first aid kit newsletter. Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager. And Armand a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in depth journalism about healthcare in America and a core program at KFF, an independent source of health policy research, polling and journalism. Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax exempt donations. You can learn more about INN at INN. org. Finally, thanks to everybody who supports this show financially– you can join in any time at arm and a leg show dot com, slash, support– and thanks for listening.

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and the social platform X. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

And subscribe to “An Arm and a Leg” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

HHS shares its Plan for Promoting Responsible Use of Artificial Intelligence in Automated and Algorithmic Systems by State, Local, Tribal, and Territorial Governments in the Administration of Public Benefits

Foster care placement for LGBTQI+ children

Healthy Start funding will better support moms and babies to improve health

Monica Kelly was thrilled to learn she was expecting her second child.

The Tennessee mother was around 13 weeks pregnant when, according to a lawsuit filed against the state of Tennessee, doctors gave her the devastating news that her baby had Patau syndrome.

The genetic disorder causes serious developmental defects and often results in miscarriage, stillbirth, or death within one year of birth. Continuing her pregnancy, doctors told her, could put her at risk of infection and complications that include high blood pressure, organ failure, and death.

But they said they could not perform an abortion due to a Tennessee law banning most abortions that went into effect two months after the repeal of Roe v. Wade in June 2022, court records show.

So Kelly traveled to a northwestern Florida hospital to get an abortion while about 15 weeks pregnant. She is one of seven women and two doctors suing Tennessee because they say the state’s near-total abortion ban imperils the lives of pregnant women.

More than 25,000 women like Kelly traveled to Florida for an abortion over the past five years, state data shows. Most came from states such as Alabama, Louisiana, and Mississippi with little or no access to abortion, data from the Centers for Disease Control and Prevention shows. Hundreds traveled from as far as Texas.

But a recent Florida Supreme Court ruling paved the way for the Sunshine State to enforce a six-week ban beginning in May, effectively leaving women in much of the South with little or no access to abortion clinics. The ban could be short-lived if 60% of Florida voters in November approve a constitutional amendment adding the right to an abortion.

Related Coverage Conservative Justices Stir Trouble for Republican Politicians on Abortion Read More

In the meantime, nonprofit groups are warning they may not be able to meet the increased demand for help from women from Florida and other Southeastern states to travel for an abortion. They fear women who lack the resources will be forced to carry unwanted pregnancies to term because they cannot afford to travel to states where abortions are more available.

That could include women whose pregnancies, like Kelly’s, put them at risk.

“The six-week ban is really a problem not just for Florida but the entire Southeast,” said McKenna Kelley, a board member of the Tampa Bay Abortion Fund. “Florida was the last man standing in the Southeast for abortion access.”

Travel Bans and Stricter Limits

Supporters of the Florida restrictions aren’t backing down. Some want even stricter limits. Republican state Rep. Mike Beltran voted for both the 15-week and six-week bans. He said the vast majority of abortions are elective and that those related to medical complications make up a tiny fraction.

State data shows that 95% of abortions last year were either elective or performed due to social or economic reasons. More than 5% were related to issues with either the health of the mother or the fetus.

Beltran said he would support a ban on travel for abortions but knows it would be challenged in the courts. He would support measures that prevent employers from paying for workers to travel for abortions and such costs being tax-deductible, he said.

“I don’t think we should make it easier for people to travel for abortion,” he said. “We should put things in to prevent circumvention of the law.”

Both abortion bans were also supported by GOP state lawmaker Joel Rudman. As a physician, Rudman said, he has delivered more than 100 babies and sees nothing in the current law that sacrifices patient safety.

“It is a good commonsense law that provides reasonable exceptions yet respects the sanctity of life for both mother and child,” he said in a text message.

Last year, the first full year that many Southern states had bans in place, more than 7,700 women traveled to Florida for an abortion, an increase of roughly 59% compared with three years ago.

The Tampa Bay Abortion Fund, which is focused on helping local women, found itself assisting an influx of women from Arkansas, Georgia, Mississippi, Louisiana, and other states, Kelley said.

In 2023, it paid out more than $650,000 for appointment costs and over $67,000 in other expenses such as airplane tickets and lodging. Most of those who seek assistance are from low-income families including minorities or disabled people, Kelley said.

“We ask each person, ‘What can you contribute?’” she said. “Some say zero and that’s fine.” 

Florida’s new law will mean her group will have to pivot again. The focus will now be on helping people seeking abortions travel to other states.

But the destinations are farther and more expensive. Most women, she predicted, will head to New York, Illinois, or Washington, D.C. Clinic appointments in those states are often more expensive. The extra travel distance will mean help is needed with hotels and airfare.

North Carolina, which allows abortions through about 12 weeks of pregnancy, may be a slightly cheaper option for some women whose pregnancies are not as far along, she said.

Keeping up with that need is a concern, she said. Donations to the group soared to $755,000 in 2022, which Kelley described as “rage donations” made after the U.S. Supreme Court ended half a century of guaranteeing the federal right to an abortion.

The anger didn’t last. Donations in 2023 declined to $272,000, she said.

“We’re going to have huge problems on our hands in a few weeks,” she said. “A lot of people who need an abortion are not going to be able to access one. That’s really scary and sad.”

Gray Areas Lead to Confusion

The Chicago Abortion Fund is expecting that many women from Southeastern states will head its way.

Illinois offers abortions up until fetal viability — around 24 to 26 weeks. The state five years ago repealed its law requiring parents to be notified when their children seek an abortion.

About 3 in 10 abortions performed in Illinois two years ago — almost 17,000 — involved out-of-state residents, up from fewer than a quarter the previous year, according to state records.

The Chicago nonprofit has prided itself on not turning away requests for help over the past five years, said Qudsiyyah Shariyf, a deputy director. It is adding staffers, including Spanish-language speakers, to cope with an anticipated uptick in calls for help from Southern states. She hopes Florida voters will make the crisis short-lived.  

“We’re estimating we’ll need an additional $100,000 a month to meet that influx of folks from Florida and the South,” she said. “We know it’s going to be a really hard eight months until something potentially changes.”

Losing access to abortion, especially among vulnerable groups like pregnant teenagers and women with pregnancy complications, could also increase cases of mental illness such as depression, anxiety, and even post-traumatic stress disorder, said Silvia Kaminsky, a licensed marriage and family therapist in Miami.

related coverage Can a Fetus Be an Employee? States Are Testing the Boundaries of Personhood After ‘Dobbs’ Read More

Kaminsky, who serves as board president of the American Association for Marriage and Family Therapy, said the group has received calls from therapists seeking legal guidance about whether they can help a client who wants to travel for an abortion.

That’s especially true in states such as Alabama, Georgia, and Missouri that have passed laws granting “personhood” status to fetuses. Therapists in many states, including Florida, are required to report a client who intends to harm another individual.

“It’s creating all these gray areas that we didn’t have to deal with before,” Kaminsky said.

Deborah Dorbert of Lakeland, Florida, said that Florida's 15-week abortion limit put her health at risk and that she was forced to carry to term a baby with no chance of survival.

Her unborn child was diagnosed with Potter syndrome in November 2022. An ultrasound taken at 23 weeks of pregnancy showed that the fetus had not developed enough amniotic fluid and that its kidneys were undeveloped.

Doctors told her that her child would not survive outside the womb and that there was a high risk of a stillbirth and, for her, preeclampsia, a pregnancy complication that can result in high blood pressure, organ failure, and death.

One option doctors suggested was a pre-term inducement, essentially an abortion, Dorbert said.

Dorbert and her husband were heartbroken. They decided an abortion was their safest option.

At Lakeland Regional Health, she said, she was told her surgery would have to be approved by the hospital administration and its lawyers since Florida had that year enacted its 15-week abortion restriction.

Florida’s abortion law includes an exemption if two physicians certify in writing that a fetus has a fatal fetal abnormality and has not reached viability. But a month elapsed before she got an answer in her case. Her doctor told her the hospital did not feel they could legally perform the procedure and that she would have to carry the baby to term, Dorbert said.

Lakeland Regional Health did not respond to repeated calls and emails seeking comment.

Dorbert’s gynecologist had mentioned to her that some women traveled for an abortion. But Dorbert said she could not afford the trip and was concerned she might break the law by going out of state.

At 37 weeks, doctors agreed to induce Dorbert. She checked into Lakeland Regional Hospital in March 2023 and, after a long and painful labor, gave birth to a boy named Milo.

“When he was born, he was blue; he didn’t open his eyes; he didn’t cry,” she said. “The only sound you heard was him gasping for air every so often.”

She and her husband took turns holding Milo. They read him a book about a mother polar bear who tells her cub she will always love them. They sang Bob Marley and The Wailers’ “Three Little Birds” to Milo with its chorus that “every little thing is gonna be alright.”

Milo died in his mother’s arms 93 minutes after being born.

One year later, Dorbert is still dealing with the anguish. The grief is still “heavy” some days, she said.

She and her husband have discussed trying for another child, but Florida’s abortion laws have made her wary of another pregnancy with complications.

“It makes you angry and frustrated. I could not get the health care I needed and that my doctors advised for me,” she said. "I know I can’t go through what I went through again.”

This article was produced through a partnership between KFF Health News and the Tampa Bay Times.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

As a young GI at Fort Ord in Monterey County, California, Dean Osborn spent much of his time in the oceanside woodlands, training on soil and guzzling water from streams and aquifers now known to be contaminated with cancer-causing pollutants.

“They were marching the snot out of us,” he said, recalling his year and a half stationed on the base, from 1979 to 1980. He also remembers, not so fondly, the poison oak pervasive across the 28,000-acre installation that closed in 1994. He went on sick call at least three times because of the overwhelmingly itchy rash.

Mounting evidence shows that as far back as the 1950s, in an effort to kill the ubiquitous poison oak and other weeds at the Army base, the military experimented with and sprayed the powerful herbicide combination known colloquially as Agent Orange.

While the U.S. military used the herbicide to defoliate the dense jungles of Vietnam and adjoining countries, it was contaminating the land and waters of coastal California with the same chemicals, according to documents.

The Defense Department has publicly acknowledged that during the Vietnam War era it stored Agent Orange at the Naval Construction Battalion Center in Gulfport, Mississippi, and the former Kelly Air Force Base in Texas, and tested it at Florida’s Eglin Air Force Base.

According to the Government Accountability Office, however, the Pentagon’s list of sites where herbicides were tested went more than a decade without being updated and lacked specificity. GAO analysts described the list in 2018 as “inaccurate and incomplete.”

Fort Ord was not included. It is among about four dozen bases that the government has excluded but where Pat Elder, an environmental activist, said he has documented the use or storage of Agent Orange.

According to a 1956 article in the journal The Military Engineer, the use of Agent Orange herbicides at Fort Ord led to a “drastic reduction in trainee dermatitis casualties.”

“In training areas, such as Fort Ord, where poison oak has been extremely troublesome to military personnel, a well-organized chemical war has been waged against this woody plant pest,” the article noted.

Other documents, including a report by an Army agronomist as well as documents related to hazardous material cleanups, point to the use of Agent Orange at the sprawling base that 1.5 million service members cycled through from 1917 to 1994.

‘The Most Toxic Chemical’

Agent Orange is a 50-50 mixture of two ingredients, known as 2,4-D and 2,4,5-T. Herbicides with the same chemical structure slightly modified were available off the shelf, sold commercially in massive amounts, and used at practically every base in the U.S., said Gerson Smoger, a lawyer who argued before the Supreme Court for Vietnam veterans to have the right to sue Agent Orange manufacturers. The combo was also used by farmers, forest workers, and other civilians across the country.

The chemical 2,4,5-T contains the dioxin 2,3,7,8-tetrachlorodibenzo-p-dioxin or TCDD, a known carcinogen linked to several cancers, chronic conditions, and birth defects. A recent Brown University study tied Agent Orange exposure to brain tissue damage similar to that caused by Alzheimer’s. Acknowledging its harm to human health, the Environmental Protection Agency banned the use of 2,4,5-T in the U.S. in 1979. Still, the other weed killer, 2,4-D is sold off-the-shelf today.

“The bottom line is TCDD is the most toxic chemical that man has ever made,” Smoger said.

For years, the Department of Veteran Affairs has provided vets who served in Vietnam disability compensation for diseases considered to be connected to exposure to Agent Orange for military use from 1962 to 1975.

Decades after Osborn’s military service, the 68-year-old veteran, who never served in Vietnam, has battled one health crisis after another: a spot on his left lung and kidney, hypothyroidism, and prostate cancer, an illness that has been tied to Agent Orange exposure.

He says many of his old buddies from Fort Ord are sick as well.

“Now we have cancers that we didn’t deserve,” Osborn said.

The VA considers prostate cancer a “presumptive condition” for Agent Orange disability compensation, acknowledging that those who served in specific locations were likely exposed and that their illnesses are tied to their military service. The designation expedites affected veterans’ claims.

But when Osborn requested his benefits, he was denied. The letter said the cancer was “more likely due to your age,” not military service.

“This didn’t happen because of my age. This is happening because we were stationed in the places that were being sprayed and contaminated,” he said.

Studies show that diseases caused by environmental factors can take years to emerge. And to make things more perplexing for veterans stationed at Fort Ord, contamination from other harmful chemicals, like the industrial cleaner trichloroethylene, have been well documented on the former base, landing it on the EPA’s Superfund site list in 1990.

“We typically expect to see the effect years down the line,” said Lawrence Liu, a doctor at City of Hope Comprehensive Cancer Center who has studied Agent Orange. “Carcinogens have additive effects.”

In February, the VA proposed a rule that for the first time would allow compensation to veterans for Agent Orange exposure at 17 U.S. bases in a dozen states where the herbicide was tested, used, or stored.

Fort Ord is not on that list either, because the VA’s list is based on the Defense Department’s 2019 update.

“It’s a very tricky question,” Smoger said, emphasizing how widely the herbicides were used both at military bases and by civilians for similar purposes. “On one hand, we were service. We were exposed. On the other hand, why are you different from the people across the road that are privately using it?”

The VA says that it based its proposed rule on information provided by the Defense Department.

“DoD’s review found no documentation of herbicide use, testing or storage at Fort Ord. Therefore, VA does not have sufficient evidence to extend a presumption of exposure to herbicides based on service at Fort Ord at this time,” VA press secretary Terrence Hayes said in an email.

The Documentation

Yet environmental activist Elder, with help from toxic and remediation specialist Denise Trabbic-Pointer and former VA physician Kyle Horton, compiled seven documents showing otherwise. They include a journal article, the agronomist report, and cleanup-related documents as recent as 1995 — all pointing to widespread herbicide use and experimentation as well as lasting contamination at the base.

Though the documents do not call the herbicide by its colorful nickname, they routinely cite the combination of 2,4-D and 2,4,5-T. A “hazardous waste minimization assessment” dated 1991 reported 80,000 pounds of herbicides used annually at Fort Ord. It separately lists 2,4,5-T as a product for which “substitutions are necessary to minimize the environmental impacts.”

The poison oak “control program” started in 1951, according to a report by Army agronomist Floyd Otter, four years before the U.S. deepened its involvement in Vietnam. Otter detailed the use of these chemicals alone and in combination with diesel oil or other compounds, at rates generally between “one to two gallons of liquid herbicide” per acre.

“In conclusion, we are fairly well satisfied with the methods,” Otter wrote, noting he was interested in “any way in which costs can be lowered or quicker kill obtained.”

An article published in California Agriculture more than a decade later includes before and after photos showing the effectiveness of chemical brush control used in a live-oak woodland at Fort Ord, again citing both chemicals in Agent Orange. The Defense Department did not respond to questions sent April 10 about the contamination or say when the Army stopped using 2,4,5-T at Fort Ord.

“What’s most compelling about Fort Ord is it was actually used for the same purpose it was used for in Vietnam — to kill plants — not just storing it,” said Julie Akey, a former Army linguist who worked at the base in the 1990s and later developed the rare blood cancer multiple myeloma.

Akey, who also worked with Elder, runs a Facebook group and keeps a list of people stationed on the base who later were diagnosed with cancer and other illnesses. So far, she has tallied more than 1,400 former Fort Ord residents who became sick.

Elder’s findings have galvanized the group to speak up during a public comment period for the VA’s proposed rule. Of 546 comments, 67 are from veterans and others urging the inclusion of Fort Ord. Hundreds of others have written in regarding the use of Agent Orange and other chemicals at their bases.

While the herbicide itself sticks around for only a short time, the contaminant TCDD can linger in sediment for decades, said Kenneth Olson, a professor emeritus of soil science at the University of Illinois Urbana-Champaign.

A 1995 report from the Army’s Sacramento Corps of Engineers, which documented chemicals detected in the soil at Fort Ord, found levels of TCDD at 3.5 parts per trillion, more than double the remediation goal at the time of 1.2 ppt. Olson calls the evidence convincing.

“It clearly supports the fact that 2,4,5-T with unknown amounts of dioxin TCDD was applied on the Fort Ord grounds and border fences,” Olson said. “Some military and civilian personnel would have been exposed.”

The Department of Defense has described the Agent Orange used in Vietnam as a “tactical herbicide,” more concentrated than what was commercially available in the U.S. But Olson said his research suggests that even if the grounds maintenance crew used commercial versions of 2,4,5-T, which was available in the federal supply catalog, the soldiers would have been exposed to the dioxin TCDD.

The half dozen veterans who spoke with KFF Health News said they want the military to take responsibility.

The Pentagon did not respond to questions regarding the upkeep of the list or the process for adding locations.

In the meantime, the Agency for Toxic Substances and Disease Registry is studying potential chemical exposure among people who worked and lived on Fort Ord between 1985 and 1994. However, the agency is evaluating drinking water for contaminants such as trichloroethylene and not contamination or pollution from other chemicals such as Agent Orange or those found in firefighting foams.

Other veterans are frustrated by the VA’s long process to recognize their illnesses and believe they were sickened by exposure at Fort Ord.

“Until Fort Ord is recognized by the VA as a presumptive site, it’s probably going to be a long, difficult struggle to get some kind of compensation,” said Mike Duris, a 72-year-old veteran diagnosed with prostate cancer four years ago who ultimately underwent surgery.

Like so many others, he wonders about the connection to his training at Fort Ord in the early ’70s — drinking the contaminated water and marching, crawling, and digging holes in the dirt.

“Often, where there is smoke, there’s fire,” Duris said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Hace más de 60 años, legisladores en Colorado adoptaron la idea de que la intervención temprana podría prevenir el abuso infantil y salvar vidas. El requisito del estado de que ciertos profesionales informaran a las autoridades cuando sospechaban que un niño había sido maltratado o descuidado fue una de las primeras leyes de informes obligatorios en la nación.

Desde entonces, estas leyes se han expandido a nivel nacional para abarcar más tipos de maltrato, incluido el abandono, que ahora representa la mayoría de los informes, y han aumentado el número de profesiones obligadas a informar. En algunos estados, se requiere que todos los adultos informen lo que sospechan que pueda ser un caso de abuso o negligencia.

Pero ahora hay esfuerzos en Colorado y otros estados para revertir estas leyes, argumentando que el resultado ha sido demasiados informes infundados, que perjudican desproporcionadamente a las familias que son pobres, negras, indígenas o tienen miembros con discapacidades.

“Hay una larga y deprimente historia basada en el enfoque de que nuestra respuesta principal a una familia en dificultades es reportar”, dijo Mical Raz, médica e historiadora de la Universidad de Rochester en Nueva York. “Ahora hay una gran cantidad de evidencia que demuestra que más informes no están asociados con mejores resultados para los niños”.

Stephanie Villafuerte, defensora del pueblo para la protección infantil de Colorado, supervisa un grupo de trabajo para reexaminar las leyes de informes obligatorios del estado. Dijo que el grupo busca equilibrar la necesidad de informar casos legítimos de abuso y negligencia con el deseo de eliminar informes inapropiados.

“Esto está diseñado para ayudar a las personas que se ven afectadas de manera desproporcionada”, dijo Villafuerte. “Espero que la combinación de estos esfuerzos pueda marcar la diferencia”.

A algunos críticos les preocupa que los cambios a la ley pueda dar lugar a que se pasen por alto casos de abuso. Los trabajadores médicos y de cuidado infantil que forman parte del grupo de trabajo han expresado preocupación sobre la responsabilidad legal.

Aunque es raro que las personas sean acusadas penalmente por no informar, también pueden enfrentar responsabilidad civil o repercusiones profesionales, incluidas amenazas a sus licencias.

El ser reportado a los servicios de protección infantil se está volviendo cada vez más común. Más de 1 de cada 3 niños en el país será objeto de una investigación de abuso y negligencia infantil para cuando cumplan 18 años, según una estimación que se cita con frecuencia, un estudio de 2017 financiado por la Oficina de Niños del Departamento de Salud y Servicios Humanos.

A las familias negras y nativas americanas, las familias pobres y los padres o niños con discapacidades se las mira con lupa. La investigación ha encontrado que, entre estos grupos, los padres tienen más probabilidades de perder los derechos parentales y los niños tienen más probabilidades de terminar en hogares temporales.

En una abrumadora mayoría de investigaciones, no se confirma ningún abuso o negligencia. Sin embargo, los que estudian cómo afectan estas investigaciones a las familias las describen como aterradoras y aislantes.

En Colorado, el número de informes de abuso y negligencia infantil ha aumentado un 42% en la última década, y alcanzó un récord de 117,762 el año pasado, según datos estatales. Aproximadamente, otras 100,000 llamadas a la línea directa no se contaron como informes porque eran solicitudes de información o se referían a asuntos como la manutención de los hijos o la protección de adultos, dijeron oficiales del Departamento de Servicios Humanos de Colorado.

El aumento de los informes se puede rastrear hasta una política que alienta a una amplia gama de profesionales —incluidos el personal escolar y médico, terapeutas, entrenadores, miembros del clero, bomberos, veterinarios, dentistas y trabajadores sociales— a llamar a una línea directa cada vez que tengan una preocupación.   

Estas llamadas no reflejan un aumento en el maltrato. Más de dos tercios de los informes que reciben las agencias en Colorado se desestiman porque no cumplen con el umbral para la investigación. De los niños cuyos casos se evalúan, se comprueba que el 21% ha sufrido abuso o negligencia. El número real de casos confirmados no ha aumentado en la última década.

Si bien los estudios no demuestran que las leyes que obligan a informar mantengan seguros a los niños, informó el grupo de trabajo de Colorado en enero, hay evidencia de daño. “El informe obligatorio impacta desproporcionadamente a las familias de color”, iniciando el contacto entre los servicios de protección infantil y familias que no presentan preocupaciones por abuso o negligencia, dijo el grupo de trabajo.

Este grupo también está analizando si una mejor selección podría mitigar “el impacto desproporcionado del informe obligatorio en comunidades con recursos limitados, comunidades de color y personas con discapacidades”.

También señaló que la única forma de informar preocupaciones sobre un niño es con un informe formal a una línea directa. Sin embargo, muchas de esas llamadas no son para informar sobre abuso en absoluto, sino intentos de conectar a niños y familias con recursos como alimentos o asistencia para la vivienda.

Los que llaman a la línea directa pueden querer ayudar, pero las familias que son objeto de informes erróneos de abuso y negligencia rara vez lo ven de esa manera.

Esto incluye a Meighen Lovelace, que vive en una zona rural de Colorado y que pidió a KFF Health News que no revelara su ciudad natal por temor a atraer la atención no deseada de funcionarios locales. Para la hija de Lovelace, que es neurodivergente y tiene discapacidades físicas, los informes comenzaron en 2015, cuando empezó el preescolar a los 4 años.

Los maestros y proveedores médicos que hacían los informes a menudo sugerían que la agencia de servicios humanos del condado podría ayudar a la familia de Lovelace. Pero las investigaciones que siguieron fueron invasivas y traumáticas.

“Nuestro mayor temor latente es, ‘¿van a llevarse a nuestros hijos?'”, dijo Lovelace, quien es defensora de la Colorado Cross-Disability Coalition, una organización que aboga por los derechos civiles de las personas con discapacidades.

“Tenemos miedo de pedir ayuda. Nos está impidiendo ingresar a los servicios debido al miedo al bienestar infantil”, expresó.

Funcionarios de servicios humanos, estatales y del condado, dijeron que no podían comentar sobre casos específicos.

El grupo de trabajo de Colorado planea sugerir aclarar las definiciones de abuso y negligencia bajo la ley de informe obligatorio del estado. Los que tienen que informar no deben “hacer un informe únicamente debido a la raza, clase o género de una familia/niño”, ni debido a una vivienda, muebles, ingresos o ropa inadecuados. Además, no debe haber un informe basado únicamente en el “estado de discapacidad del menor, padre o tutor”, según la recomendación preliminar del grupo.

También planean recomendar capacitación adicional para los que tienen la obligación de informar, ayuda para profesionales que están decidiendo si hacer una llamada o no, y un número de teléfono alternativo, o “línea directa cálida”, para casos en los que los que llaman creen que una familia necesita ayuda material, en lugar de vigilancia.

Los críticos dicen que estos cambios podrían dejar a más niños vulnerables a abusos no denunciados.

“Me preocupa que agregando sistemas como la línea directa cálida, se nos escabullan los casos en lo que los niños están en verdadero peligro, y que no reciban ayuda”, dijo Hollynd Hoskins, abogada que representa a víctimas de abuso infantil.

Hoskins ha demandado a profesionales que no informan sus sospechas.

El grupo de trabajo de Colorado incluye a funcionarios de salud y educación, fiscales, defensores de las víctimas, representantes del bienestar infantil del condado y abogados, así como a cinco personas que tienen experiencia en el sistema de bienestar infantil. Planea finalizar sus recomendaciones a principios del próximo año con la esperanza de que los legisladores estatales consideren cambios en la política en 2025. La implementación de cualquier nueva ley podría llevar varios años.

Colorado es uno de varios estados, incluidos Nueva York y California, que han considerado recientemente cambios para restringir, en lugar de expandir, el informe sobre supuestos abusos.

En la ciudad de Nueva York, se está capacitando a los maestros para que lo piensen dos veces antes de hacer un informe, mientras que el estado de Nueva York introdujo una “línea directa cálida” para ayudar a conectar a las familias con recursos como vivienda y cuidado infantil.

En California, un grupo de trabajo estatal destinado a cambiar del “informe obligatorio al apoyo comunitario” está planeando recomendaciones similares a las de Colorado.

Entre los que abogan por el cambio están las personas con experiencia en el sistema de bienestar infantil. Incluyen a Maleeka Jihad, quien lidera la Coalición MJCF con sede en Denver, que aboga por la abolición del informe obligatorio junto con el resto del sistema de bienestar infantil, citando su daño a las comunidades negras, nativas americanas y latinas.

“El informe obligatorio es otra forma de mantenernos vigilados por blancos [no hispanos]”, dijo Jihad. A él mismo cuando era niño lo arrebataron del cuidado de un padre amoroso y lo colocaron en el sistema temporal.

La reforma no es suficiente, dijo. “Sabemos lo que necesitamos, y generalmente son fondos y recursos”. Algunos de estos recursos —como vivienda asequible y cuidado infantil— no existen a un nivel suficiente para todas las familias de Colorado que los necesitan, dijo Jihad.  

Otros servicios están disponibles, pero hay que encontrarlos. Lovelace dijo que los informes disminuyeron después que la familia obtuvo la ayuda que necesitaba, en forma de una exención de Medicaid que pagaba por atención especializada para las discapacidades de su hija.

Ahora, la niña está en séptimo grado y le va bien. Ninguno de los trabajadores sociales que visitaron a la familia mencionó la exención, dijo Lovelace. “Realmente creo que no sabían nada al respecto”.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Céline Gounder, KFF Health News’ senior fellow and editor-at-large for public health, discussed the latest bird flu developments on CBS’ “CBS Mornings” on April 25.

• Click here to watch Gounder on “CBS Mornings”

KFF Health News senior correspondent Aneri Pattani discussed the details of Tennessee’s distribution of $80 million in opioid settlement funds on WPLN’s “Morning Edition” on April 22.

• Click here to hear Pattani on “Morning Edition”
• Read Pattani’s series “Payback: Tracking the Opioid Settlement Cash”

KFF Health News contributor Andy Miller discussed water fluoridation on WUGA’s “The Georgia Health Report” on April 19.

• Click here to hear Miller on “The Georgia Health Report”
• Read Miller’s “As Bans Spread, Fluoride in Drinking Water Divides Communities Across the US”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Today, Friday, April 26, Secretary Becerra released the following statement.

The press release announces 12 winners in the first phase of the $1 million Environmental Justice Community Innovator Challenge.

The Office for Civil Rights (OCR) and the Centers for Medicare & Medicaid Services (CMS) issued a final rule under Section 1557 of the Affordable Care Act (ACA)

In the 2020 elections, then-candidate Joe Biden and many of his congressional colleagues loudly advocated for a federal “public option” health insurance plan. It was framed, at the time, as part of his incoming administration’s response to the pandemic.

“Low-income Americans will be automatically enrolled in the public option at zero cost to them, though they may choose to opt out at any time,” Democrats promised in their party platform.

But since Biden entered office, it’s been crickets. The president hasn’t uttered the phrase “public option” since December 2020, according to factba.se, which tracks his public remarks.

Why the disappearing act? In a word: politics.

“Out of the gate you’d have a huge powerful lobby against the public option — the hospitals — since providers have the most to lose: lots of money,” said Matthew Fiedler, an economist at the Brookings Institution who has studied payment disparities between insurance plans. The health-care industry is the largest lobbying sector in Washington, with more than $132 million spent annually just by hospitals and nursing homes, according to OpenSecrets.

For those who’ve forgotten, the idea was to create a government-sponsored insurance plan to compete with commercial insurers under the Affordable Care Act. The concept, previously backed by President Barack Obama, didn’t make it into the final version of the ACA due to opposition from pretty much everyone in health care.

In theory, a public option structured like Medicare, Medicaid or the military’s Tricare program could save billions in health-care spending by both the federal government and consumers because (like the existing federal plans) it would pay health providers less than commercial insurers. Fiedler said the public option could possibly save money, relative to commercial insurance, even if it paid as much as double Medicare’s rates.

And without having to earn a profit, such a plan could spend more money on patient care.

Unsurprisingly, insurers opposed the public option, but Fiedler said it’s hospital opposition that keeps it shelved.

As an example, Fiedler points to Medicare drug price negotiation, another long shot Democratic priority. Biden got that across the finish line as part of his 2022 Inflation Reduction Act.

“Congress didn’t want to pick a fight with hospitals, but they’re willing to take on drug companies,” Fiedler said.

Biden’s party hasn’t yet put together its official platform for the 2024 election, so perhaps the public option will reappear on his agenda. Spokespeople for his reelection campaign and the White House didn’t respond to emailed questions about it.

The idea still has many fans: Led by Colorado, some states have sought to create their own versions, though their plans rely on commercial insurers to administer the coverage. Insurers were able to tank public option proposals in Connecticut, and they’ve complained that they would lose money under Colorado’s proposal.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Private Medicaid health plans lost millions of members in the past year as pandemic protections that prohibited states from dropping anyone from the government program expired.

But despite Medicaid’s unwinding, as it’s known, at least two of the five largest publicly traded companies selling plans have continued to increase revenue from the program, according to their latest earnings reports.

“It’s a very interesting paradox,” said Andy Schneider, a research professor at Georgetown University’s McCourt School of Public Policy, of plans’ Medicaid revenue increasing despite enrollment drops.

Medicaid, the state-federal health program for low-income and disabled people, is administered by states. But most people enrolled in the program get their health care through insurers contracted by states, including UnitedHealthcare, Centene, and Molina.

The companies persuaded states to pay them more money per Medicaid enrollee under the assumption that younger and healthier people were dropping out — presumably for Obamacare coverage or employer-based health insurance, or because they didn’t see the need to get coverage — leaving behind an older and sicker population to cover, their executives have told investors.

Several of the companies reported that states have made midyear and retrospective changes in their payments to plans to account for the worsening health status of members.

In an earnings call with analysts on April 25, Molina Healthcare CEO Joe Zubretsky said 19 states increased their payment rates this year to adjust for sicker Medicaid enrollees. “States have been very responsive,” Zubretsky said. “We couldn’t be more pleased with the way our state customers have responded to having rates be commensurate with normal cost trends and trends that have been influenced by the acuity shift.”

Health plans have faced much uncertainty during the Medicaid unwinding, as states began reassessing enrollees’ eligibility and dropping those deemed no longer qualified or who lost coverage because of procedural errors. Before the unwinding, plans said they expected the overall risk profile of their members to go up because those remaining in the program would be sicker.

UnitedHealthcare, Centene, and Molina had Medicaid revenue increases ranging from 3% to 18% in 2023, according to KFF. The two other large Medicaid insurers, Elevance and CVS Health, do not break out Medicaid-specific revenue.

The Medicaid enrollment of the five companies collectively declined by about 10% from the end of March 2023 through the end of December 2023, from 44.2 million people to 39.9 million, KFF data shows.

In the first quarter of 2024, UnitedHealth’s Medicaid revenue rose to $20.5 billion, up from $18.8 billion in the same quarter of 2023.

Molina on April 24 reported nearly $7.5 billion in Medicaid revenue in the first quarter of 2024, up from $6.3 billion in the same quarter a year earlier.

On April 26, Centene reported that its Medicaid enrollment fell 18.5% to 13.3 million in the first quarter of 2024 compared with the same period a year ago. The company’s Medicaid revenue dipped 3% to $22.2 billion.

Unlike UnitedHealthcare, whose Medicaid enrollment fell to 7.7 million in March 2024 from 8.4 million a year prior, Molina’s Medicaid enrollment rose in the first quarter of 2024 to 5.1 million from 4.8 million in March 2023. Molina’s enrollment jump last year was partly a result of its having bought a Medicaid plan in Wisconsin and gained a new Medicaid contract in Iowa, the company said in its earnings news release.

Molina added 1 million members because states were prohibited from terminating Medicaid coverage during the pandemic. The company has lost 550,000 of those people during the unwinding and expects to lose an additional 50,000 by June.

About 90% of Molina Medicaid members have gone through the redetermination process, Zubretsky said.

The corporate giants also offset the enrollment losses by getting more Medicaid money from states, which they use to pass on higher payments to certain facilities or providers, Schneider said. By holding the money temporarily, the companies can count these “directed payments” as revenue.

Medicaid health plans were big winners during the pandemic after the federal government prohibited states from dropping people from the program, leading to a surge in enrollment to about 93 million Americans.

States made efforts to limit health plans’ profits by clawing back some payments above certain thresholds, said Elizabeth Hinton, an associate director at KFF.

But once the prohibition on dropping Medicaid enrollees was lifted last spring, the plans faced uncertainty. It was unclear how many people would lose coverage or when it would happen. Since the unwinding began, more than 20 million people have been dropped from the rolls.

Medicaid enrollees’ health care costs were lower during the pandemic, and some states decided to exclude pandemic-era cost data as they considered how to set payment rates for 2024. That provided yet another win for the Medicaid health plans.

Most states are expected to complete their Medicaid unwinding processes this year.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Una mañana de enero de 2021, Carol Rosen recibió un tratamiento estándar para el cáncer de mama metastásico. Murió después de tres semanas de sufrimiento, con un dolor insoportable causado por la misma droga que debería haber ayudado a prolongar su vida.

Rosen, maestra jubilada de 70 años, pasó sus últimos días angustiada, sufriendo de diarrea intensa, náuseas y dolorosas llagas en la boca que le impedían comer, beber y, finalmente, hablar. La piel se le desprendía del cuerpo. Sus riñones y su hígado habían dejado de funcionar. “Tu cuerpo arde desde”, dijo la hija de Rosen, Lindsay Murray, de Andover, Massachusetts.

Rosen fue una de los más de 275,000 pacientes con cáncer en los Estados Unidos a quienes cada año se les administra fluorouracilo, también conocido como 5-FU, o que toman un medicamento casi idéntico en forma de pastilla llamado capecitabina, como ella lo hacía.

Estos tipos de quimioterapia comunes son difíciles de tolerar en general, pero para los pacientes que tienen deficiencia de una enzima que metaboliza la droga, puede ser una tortura o causar la muerte.

La toxicidad por fluorouracilo ocurre porque los medicamentos permanecen en el cuerpo durante horas en vez de ser metabolizados y excretados rápidamente.

Se estima que las drogas matan a 1 de cada 1,000 pacientes que las toman —cientos de personas cada año— y hacen que 1 de cada 50 pacientes se enfermen gravemente o deban ser internados. Los médicos pueden realizar pruebas para detectar la deficiencia y obtener resultados en una semana, y así determinar si cambiar de medicamento o reducir la dosis para los pacientes que tienen la variante genética asociada con el riesgo.

Sin embargo, una encuesta reciente encontró que sólo el 3% de los oncólogos piden las pruebas de forma habitual antes de administrar 5-FU o capecitabina a sus pacientes. Esto se debe a que las pautas de tratamiento del cáncer más aceptadas en el país, emitidas por la Red Nacional Integral del Cáncer, no recomiendan las pruebas de manera preventiva.

La Administración de Alimentos y Medicamentos (FDA) agregó nuevas advertencias sobre los riesgos letales del 5-FU a la etiqueta del medicamento el 21 de marzo pasado, después de consultas de KFF Health News sobre la política de la agencia con respecto a la droga. Sin embargo, no exigió que los médicos realicen la prueba antes de recetar tratamientos de quimioterapia.

La agencia, cuyo plan para reforzar la supervisión de las pruebas de laboratorio fue abordado en una audiencia en la Cámara de Representantes, también el 21 de marzo, dijo que no podía recomendar las pruebas de toxicidad del 5-FU porque nunca las había revisado.

Pero actualmente la FDA no revisa la mayoría de las pruebas de diagnóstico, dijo Daniel Hertz, profesor asociado de la Escuela de Farmacia de la Universidad de Michigan. Durante años, Hertz, junto con otros médicos y farmacéuticos, ha solicitado a la FDA que agregue la máxima advertencia (llamada “caja negra”) a la etiqueta del medicamento, para instar a los profesionales que lo recetan a realizar las pruebas para detectar la deficiencia de la enzima.

“La FDA tiene la responsabilidad de asegurar que los medicamentos se utilicen de forma segura y eficaz”, dijo. La falta de esta advertencia, afirmó, “es una abdicación de su responsabilidad”.

Las nuevas advertencias son “un pequeño paso adelante, pero no el cambio radical que necesitamos”, afirmó.

Europa lidera en seguridad

Las autoridades farmacéuticas británicas y de la Unión Europea recomiendan la prueba desde 2020. En Estados Unidos, un número pequeño pero creciente de hospitales, grupos profesionales y defensores de la salud, incluyendo la Sociedad Americana del Cáncer, también recomiendan las pruebas de forma rutinaria.

La mayoría de las aseguradoras estadounidenses, tanto públicas como privadas, cubren las pruebas, que Medicare reembolsa por $175, aunque pueden costar más dependiendo de cuántas variantes detectan.

En sus últimas directrices sobre el cáncer de colon, el panel de la Red Nacional Integral del Cáncer señaló que no todas las personas que portan la variante genética se enferman cuando toman el medicamento, y que recetar dosis más bajas para estos pacientes podría privarlos de curarse o de tener una remisión del cáncer. Muchos médicos del panel, incluyendo Wells Messersmith, oncólogo de la Universidad de Colorado, dijeron que nunca han registrado una muerte por 5-FU.

En los hospitales europeos, se empieza con la mitad o un cuarto de la dosis de 5-FU para los pacientes cuyas pruebas muestran que metabolizan la droga lentamente. Luego, se aumenta la dosis si el paciente responde bien al medicamento. Los defensores de este abordaje dicen que las autoridades estadounidenses de oncología están demorando el tratamiento innecesariamente, y perjudicando a las personas.

“Creo que se trata de una terquedad de parte de las personas que participan en estos paneles”, dijo Gabriel Brooks, oncólogo e investigador del Dartmouth Cancer Center. “Piensan: ‘Somos oncólogos, los medicamentos son nuestras herramientas, no queremos buscar razones para no usar nuestras herramientas’”.

Los oncólogos están acostumbrados a la toxicidad de la quimioterapia y tienden a tener una actitud de “sin dolor no hay recompensa”, dijo. El 5-FU se utiliza desde la década de 1950.

Por otro lado, “cualquiera que haya perdido un paciente de esta manera va a querer someter a todos a las pruebas”, dijo Robert Diasio, de la Clínica Mayo, quien ayudó a realizar importantes estudios sobre la deficiencia genética en 1988.

Muchos oncólogos utilizan las pruebas genéticas para determinar cuál de los costosos medicamentos disponibles usar para reducir el tamaño de un tumor. Pero no siempre sucede lo mismo con las pruebas genéticas destinadas a mejorar la seguridad de los medicamentos, dijo Mark Fleury, director de políticas de Cancer Action Network, una organización defensora sin fines de lucro de la Sociedad Americana del Cáncer.

En el caso de medicamentos nuevos, cuando se trata de pruebas para determinar si son apropiados para cada paciente, “hay muchas más fuerzas alineadas para que se realicen estas pruebas”, dijo Fleury. “Pero estas fuerzas y grupos interesados no están involucrados” con una droga genérica como el 5-FU, que fue aprobada por primera vez en 1962 y cuesta aproximadamente $17 por mes.

Carol Rosen fue una de más de 1,000 pacientes tratadas con fluoropirimidina en 2021.

Su hija estaba desconsolada y furiosa después de la muerte de Rosen. “Quería demandar al hospital. Quería demandar al oncólogo”, dijo Murray. “Pero me di cuenta que eso no era lo que mi mamá hubiera querido”.

Le escribió al director de control de calidad del Dana-Farber, Joe Jacobson, para instarlo a realizar las pruebas de forma rutinaria. Jacobson respondió el mismo día, y el hospital adoptó rápidamente un sistema de pruebas que ahora cubre a más del 90% de los pacientes que podrían ser tratados con fluoropirimidina. Se detectaron alrededor de 50 pacientes con variantes de riesgo en los primeros 10 meses, dijo Jacobson.

Dana-Farber utiliza una prueba de la Clínica Mayo que detecta ocho variantes potencialmente riesgosas del gen. Los hospitales de Veterans Affairs utilizan una prueba que detecta 11 variantes, mientras que la mayoría de los demás identifican sólo cuatro variantes.

Distintas pruebas para distintas ascendencias

Cuantas más variantes detecte una prueba, mejores son las posibilidades de encontrar variantes genéticas menos comunes en poblaciones étnicamente diversas. Por ejemplo, las deficiencias más peligrosas en personas de ascendencia africana y europea, respectivamente, son causadas por distintas variantes.

Hay pruebas que pueden identificar cientos de variantes que afectan el metabolismo de la droga, pero tardan más y son más caras.

Estas son tristes realidades para Scott Kapoor, un médico de urgencias que vive cerca de Toronto cuyo hermano, Anil Kapoor, murió en febrero de 2023 de toxicidad por 5-FU.

Anil Kapoor era un conocido urólogo y cirujano, investigador, médico y un amigo divertido: a su funeral fueron cientos de personas. Su muerte a los 58 años, unas pocas semanas después que le diagnosticaran cáncer de colon en estadio 4, sorprendió y enfureció a su familia.

El sistema de salud de Ontario, donde se trató Kapoor, recién había empezado a realizar pruebas para detectar cuatro variantes genéticas, identificadas por estudios desarrollados en poblaciones principalmente europeas. Anil Kapoor y sus hermanos, hijos de inmigrantes de la India nacidos en Canadá, son portadores de una variante genética que parece estar asociada con las personas de ascendencia del sur de Asia.

Scott Kapoor apoya pruebas más extensas para detectar la mutación, ya que sólo alrededor de la mitad de los habitantes de Toronto son de ascendencia europea, y sostiene que el antídoto contra la toxicidad por fluoropirimidina, aprobado por la FDA en 2015, debería estar fácilmente disponible.

Sin embargo, este antídoto sólo funciona por unos días después del consumo del fármaco, y los síntomas definitivos suelen tardar más tiempo en aparecer.

Lo más importante, dijo, es que los pacientes estén al tanto del riesgo. “Les dices: ‘Te voy a dar un medicamento que tiene una probabilidad de 1 entre 1,000 de matarte. Puedes hacerte esta prueba’. La mayoría de los pacientes dirán: ‘Quiero hacerme esa prueba y la pagaré’, o simplemente: ‘Reduzca la dosis a la mitad’”.

Murray percibe un impulso por las pruebas obligatorias. En 2022, la Universidad de Ciencias y Salud de Oregon pagó $1 millón para resolver una demanda tras una muerte por sobredosis.

“Lo que va a romper esa barrera son las demandas y las grandes instituciones como Dana-Farber que están implementando programas y viendo cómo tienen éxito”, dijo. “Creo que los proveedores se sentirán acorralados. Van a seguir escuchando a las familias y tendrán que hacer algo al respecto”.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

With little pomp, California launched two apps at the start of the year offering free behavioral health services to youths to help them cope with everything from living with anxiety to body acceptance.

Through their phones, young people and some caregivers can meet BrightLife Kids and Soluna coaches, some who specialize in peer support or substance use disorders, for roughly 30-minute virtual counseling sessions that are best suited to those with more mild needs, typically those without a clinical diagnosis. The apps also feature self-directed activities, such as white noise sessions, guided breathing, and videos of ocean waves to help users relax.

“We believe they’re going to have not just great impact, but wide impact across California, especially in places where maybe it’s not so easy to find an in-person behavioral health visit or the kind of coaching and supports that parents and young people need,” said Gov. Gavin Newsom’s health secretary, Mark Ghaly, during the Jan. 16 announcement.

The apps represent one of the Democratic governor’s major forays into health technology and come with four-year contracts valued at $498 million. California is believed to be the first state to offer a mental health app with free coaching to all young residents, according to the Department of Health Care Services, which operates the program.

However, the rollout has been slow. So slow that one of the companies has missed a deadline to make its app available on Android phones. Only about 15,000 of the state’s 12.6 million children and young adults have signed up for the apps, and school counselors say they’ve never heard of them.

Advocates for youth question the wisdom of investing taxpayer dollars in two private companies. Social workers are concerned the companies’ coaches won’t properly identify youths who need referrals for clinical care. And the spending is drawing lawmaker scrutiny amid a state deficit pegged at as much as $73 billion.

An App for That

Newsom’s administration says the apps fill a need for young Californians and their families to access professional telehealth for free, in multiple languages, and outside of standard 9-to-5 hours. It’s part of Newsom’s sweeping $4.7 billion master plan for kids’ mental health, which was introduced in 2022 to increase access to mental health and substance use support services. In addition to launching virtual tools such as the teletherapy apps, the initiative is working to expand workforce capacity, especially in underserved areas.

“The reality is that we are rarely 6 feet away from our devices,” said Sohil Sud, director of Newsom’s Children and Youth Behavioral Health Initiative. “The question is how we can leverage technology as a resource for all California youth and families, not in place of, but in addition to, other behavioral health services that are being developed and expanded.”

The virtual platforms come amid rising depression and suicide rates among youth and a shortage of mental health providers. Nearly half of California youths from the ages of 12 to 17 report having recently struggled with mental health issues, with nearly a third experiencing serious psychological distress, according to a 2021 study by the UCLA Center for Health Policy Research. These rates are even higher for multiracial youths and those from low-income families.

But those supporting youth mental health at the local level question whether the apps will move the needle on climbing depression and suicide rates.

“It’s fair to applaud the state of California for aggressively seeking new tools,” said Alex Briscoe of California Children’s Trust, a statewide initiative that, along with more than 100 local partners, works to improve the social and emotional health of children. “We just don’t see it as fundamental. And we don’t believe the youth mental health crisis will be solved by technology projects built by a professional class who don’t share the lived experience of marginalized communities.”

The apps, BrightLife Kids and Soluna, are operated by two companies: Brightline, a 5-year-old venture capital-backed startup; and Kooth, a London-based publicly traded company that has experience in the U.K. and has also signed on some schools in Kentucky and Pennsylvania and a health plan in Illinois. In the first five months of Kooth’s Pennsylvania pilot, 6% of students who had access to the app signed up.

Brightline and Kooth represent a growing number of health tech firms seeking to profit in this space. They beat out dozens of other bidders including international consulting companies and other youth telehealth platforms that had already snapped up contracts in California.

Although the service is intended to be free with no insurance requirement, Brightline’s app, BrightLife Kids, is folded into and only accessible through the company’s main app, which asks for insurance information and directs users to paid licensed counseling options alongside the free coaching. After KFF Health News questioned why the free coaching was advertised below paid options, Brightline reordered the page so that, even if a child has high-acuity needs, free coaching shows up first.

The apps take an expansive view of behavioral health, making the tools available to all California youth under age 26 as well as caregivers of babies, toddlers, and children 12 and under. When KFF Health News asked to speak with an app user, Brightline connected a reporter with a mother whose 3-year-old daughter was learning to sleep on her own.

‘It’s Like Crickets’

Despite being months into the launch and having millions in marketing funds, the companies don’t have a definitive rollout timeline. Brightline said it hopes to have deployed teams across the state to present the tools in person by midyear. Kooth said developing a strategy to hit every school would be “the main focus for this calendar year.”

“It’s a big state — 58 counties,” Bob McCullough of Kooth said. “It’ll take us a while to get to all of them.”

Brightline’s contract states that the company was required to launch downloadable apps for iOS and Android phones by January, but so far BrightLife Kids is available only on Apple phones. Brightline said it’s aiming to launch the Android version over the summer.

“Nobody’s really done anything like this at this magnitude, I think, in the U.S. before,” said Naomi Allen, a co-founder and the CEO of Brightline. “We’re very much in the early innings. We’re already learning a lot.”

The contracts, obtained by KFF Health News through a records request, show the companies operating the two apps could earn as much as $498 million through the contract term, which ends in June 2027, months after Newsom is set to leave office. And the state is spending hundreds of millions more on Newsom’s virtual behavioral health strategy. The state said it aims to make the apps available long-term, depending on usage.

The state said 15,000 people signed up in the first three months. When KFF Health News asked how many of those users actively engaged with the app, it declined to say, noting that data would be released this summer.

KFF Health News reached out to nearly a dozen California mental health professionals and youths. None of them were aware of the apps.

“I’m not hearing anything,” said Loretta Whitson, executive director of the California Association of School Counselors. “It’s like crickets.”

Whitson said she doesn’t think the apps are on “anyone’s” radar in schools, and she doesn’t know of any schools that are actively advertising them. Brightline will be presenting its tool to the counselor association in May, but Whitson said the company didn’t reach out to plan the meeting; she did.

Concern Over Referrals

Whitson isn’t comfortable promoting the apps just yet. Although both companies said they have a clinical team on staff to assist, Whitson said she’s concerned that the coaches, who aren’t all licensed therapists, won’t have the training to detect when users need more help and refer them to clinical care.

This sentiment was echoed by other school-based social workers, who also noted the apps’ duplicative nature — in some counties, like Los Angeles, youths can access free virtual counseling sessions through Hazel Health, a for-profit company. Nonprofits, too, have entered this space. For example, Teen Line, a peer-to-peer hotline operated by Southern California-based Didi Hirsch Mental Health Services, is free nationwide.

While the state is also funneling money to the schools as part of Newsom’s master plan, students and school-based mental health professionals voiced confusion at the large app investment when, in many school districts, few in-person counseling roles exist, and in some cases are dwindling.

Kelly Merchant, a student at College of the Desert in Palm Desert, noted that it can be hard to access in-person therapy at her school. She believes the community college, which has about 15,000 students, has only one full-time counselor and one part-time bilingual counselor. She and several students interviewed by KFF Health News said they appreciated having engaging content on their phone and the ability to speak to a coach, but all said they’d prefer in-person therapy.

“There are a lot of people who are seeking therapy, and people close to me that I know. But their insurances are taking forever, and they’re on the waitlist,” Merchant said. “And, like, you’re seeing all these people struggle.”

Fiscal conservatives question whether the money could be spent more effectively, like to bolster county efforts and existing youth behavioral health programs.

Republican state Sen. Roger Niello, vice chair of the Senate Budget and Fiscal Review Committee, noted that California is forecasted to face deficits for the next three years, and taxpayer watchdogs worry the apps might cost even more in the long run.

“What starts as a small financial commitment can become uncontrollable expenses down the road,” said Susan Shelley of the Howard Jarvis Taxpayers Association.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

HHS announced today that 20 states have been selected to participate in two technical assistance programs.

The Biden administration wants to make it easier for Americans to get dental care. But don’t try booking an appointment just yet.

A new regulation out this month allows states to include adult dental care as a benefit that health insurers must cover under the Affordable Care Act. Following record ACA enrollment this year, the proposal represents an election-year aspiration for the future of Obamacare: It doesn’t require states to do anything, even as it shows off President Biden’s intention to make the ACA a more robust safety net.

“It’s huge, really significant,” said Colin Reusch, director of policy at Community Catalyst, a health coverage advocacy group. He said the new Biden administration rule represents “one of the first real changes” to coverage provisions of the law since it passed in 2010.

But like so much in health care, expanding access to dental services is a lot more complicated than it sounds.

An estimated 68.5 million U.S. adults lacked dental insurance in 2023, according to the nonprofit CareQuest Institute for Oral Health. That’s more than 2.5 times the roughly 26 million Americans of all ages who lack health insurance.

And millions of Americans lost dental coverage in the past year as part of the Medicaid “unwinding” that dropped low-income people who had been covered by the program during the pandemic.

At the same time, untreated dental disease is estimated to cost the United States more than $45 billion in lost productivity annually, according to the Centers for Disease Control and Prevention, and it’s linked to a long list of even more serious health problems, including heart disease and diabetes.

Still, efforts to expand U.S. dental coverage have long foundered on the shoals of cost. When people have dental insurance, they tend to use it. So including the coverage in a health insurance policy can raise overall premiums.

That’s one reason traditional Medicare coverage explicitly excludes most dental care. (Many private Medicare Advantage plans offer some dental coverage as an enticement for seniors to join.)

An effort to add a dental benefit to Medicare was stripped from Biden’s “Build Back Better” legislation before it was passed in 2022 as the Inflation Reduction Act. Instead, the administration clarified and expanded the limited circumstances in which Medicare can cover dental care. Any progress on oral health — including giving states the option to require coverage for adults — is seen by advocates as a victory. Dental coverage for children is already an essential benefit under the ACA.

But whether they actually get coverage depends on states affirmatively adding dental benefits to benchmark plans in the ACA’s insurance marketplaces. Those plans not only determine what services Affordable Care Act insurance has to cover, but also set parameters for state-employee and many private-employer health plans.

Reusch said a few states are considering the change, but it will be a while until anything is certain. States have until May 2025 to decide whether to add dental care to benchmark ACA plans; the benefit wouldn’t be effective until the 2027 plan year.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).