PHILADELPHIA — Irene Blair was expected to have another six to eight months to live in June, after her pancreatic cancer rapidly advanced to stage 4 less than a year after her initial diagnosis.

A new drug being tested in clinical trials around the world, including at Penn Medicine’s Abramson Cancer Center, was the 59-year-old grandmother from Newark, Del.’s best hope for more time.

The drug belongs to a class of pharmaceuticals long considered the holy grail of cancer research. It is a KRAS inhibitor, capable of blocking a protein that fuels an especially deadly cancer. Only 13% of pancreatic cancer patients are still alive five years after their diagnosis, the highest mortality rate of all cancers.

Called daraxonrasib, the drug is not considered a cure. But the results emerging from clinical trials point to the first major advancement in decades for a devastating cancer usually caught in late stages. Former Nebraska Sen. Ben Sasse last week disclosed in a blunt social media post that he was recently diagnosed with metastasized, stage-four pancreatic cancer and is “gonna die.”

In recent months, the federal government has sped up the review timeline for the drug made by California-based company Revolution Medicines, Inc., based on early clinical trial results.

Across 38 patients in a phase 1 trial, the drug appeared to double the survival time for at least half of patients compared to standard chemotherapy, from roughly seven months to 15.6 months.

“In pancreatic cancer, for too long, we haven’t had effective therapies beyond just chemotherapy,” said Mark O’Hara, Blair’s oncologist who leads multiple clinical trials testing KRAS inhibitors at Penn.

Blair started the therapy through a phase 3 trial in July. Within three weeks, her cancer-associated pain went away.

In October, her tumors looked stable or decreasing on scans. Her most recent December scan showed her cancer had not progressed.

Aside from occasional facial rashes, she feels normal. It’s a big improvement from how she felt previously on chemotherapy, which caused her to lose 35 pounds and become so weak she couldn’t walk.

The question now is how long the therapy can remain effective. Blair seeks extra time to “start living life.”

She officially retired from her job in real estate in May and wants to travel, with trips planned to see family in California and Florida.

Holidays have been especially hard for her.

“You just wonder, ‘Will I be here next year?’” she said.

How does the therapy work?

Cancer researchers have worked to design a drug targeting KRAS, a protein that acts like a “gas pedal” for cancer growth when mutated, since its discovery in 1982.

The mutant protein is like a pedal stuck in the down position, driving uncontrolled proliferation — which tumors thrive on. These mutations are found in a quarter of human cancers, mostly aggressive cancers of the pancreas, lung, and colon.

Scientists finally succeeded in 2021, when the first drugs capable of blocking KRAS were approved by the FDA for lung cancer. Dozens of KRAS inhibitors are now in various stages of development.

Daraxonrasib is one of the first tested for pancreatic cancer, a tumor type where nearly 90% of cases have these mutations. Also called a ‘pan-RAS inhibitor,’ it not only targets KRAS, but two other related proteins that drive cancer when mutated, HRAS and NRAS.

More than 90% of the 83 patients in a phase 1 trial saw their pancreatic cancer stall during treatment, and roughly 30% saw shrinkage.

While taking the drug, at least half of patients gained more than eight months before the cancer started progressing again.

The drug comes in the form of three pills, taken daily at home.

The most prevalent side effect is a rash — 91% of patients in a phase 1 trial experienced this symptom, with 8% having severe cases. It often shows up on the face or scalp and is similar to acne, O’Hara said.

Diarrhea, nausea, vomiting, and mouth sores are other common symptoms.

O’Hara said these are manageable with medications for most patients and still allow them to have a better quality of life than chemotherapy.

“I want to be able to give KRAS inhibitors to all my patients right now,” he said.

Looking forward

O’Hara runs multiple trials of KRAS inhibitors at Penn.

Some of them are testing the inhibitor as a treatment for patients with metastatic cancer after other options have stopped working. Another is evaluating its use in combination with chemotherapy as an initial approach.

“I’m looking for more tools to put in that toolbox, and I think this provides a new tool,” O’Hara said.

Ben Stanger, a gastroenterologist and scientist at Penn, has led experiments in mice that showed combining a KRAS inhibitor with immunotherapy may be more effective than using the former alone.

If this approach makes it into clinical trials as well, it could still take years to evaluate the safety and efficacy of the combination.

He believes KRAS inhibitors could be “a game-changer” for pancreatic cancer if approved, particularly if paired with other anti-cancer drugs.

“Goal number one would be to make pancreas cancer, instead of a death sentence, into a more ‘chronic’ disease that is treated over time,” he said.

The federal government has granted the drug Breakthrough Therapy and Orphan Drug designations.

In October, the drug was also one of the first selected for a new program that aims to accelerate review times for drugs from one year to as short as a month, potentially putting it on a faster path to approval.

Limited options

When Blair first started having back pain around May 2024, she thought it was a pulled muscle from kickboxing.

She put a heating pad on the back of her chair and went on with life.

After her father had a stroke that July, she got it checked out at the hospital where he was admitted.

A day later, she was diagnosed with stage 2B pancreatic cancer.

“My first thought is, ‘I’m dying,’” she said.

Had she been diagnosed earlier, she would have retired early, instead of worrying about saving money.

Instead, she spent her final working year undergoing surgery to remove part of her pancreas, spleen, and several lymph nodes, followed by 12 difficult sessions of chemotherapy.

When she finished her last session in March, Blair’s scans showed no evidence of the cancer. But by late April, her back pain returned.

Two months later, more scans showed that the cancer was now considered stage 4, as it had metastasized to her liver, forming 10 to 15 new tumors.

Her best option was to enter a clinical trial of daraxonrasib at Penn.

Much to her relief, she was chosen to receive the drug in July upon enrolling in a study in which half of patients are randomized to receive chemotherapy.

“It’s enabled me to start living again,” she said, but knows eventually the therapy will likely stop working.

In that case, doctors may try the standard chemotherapy — which usually works for three to four months — or test a different therapy based on her cancer’s genomic profile, O’Hara said.

For now, she described herself as “living scan to scan,” seeking as much time as possible with her son, grandchildren, and husband.

Blair’s next evaluation is in February. She hopes it shows her disease remains stable, and she can stay in the trial.

“The alternative, honestly, is death,” she said.

©2026 The Philadelphia Inquirer, LLC. Visit at inquirer.com. Distributed by Tribune Content Agency, LLC.

When Yraida Faneite was on trial for drug-related charges, the judge had to halt proceedings at one point because her period was so heavy that blood was running down her legs.

The same struggle followed her into a federal prison in Florida after she was convicted. For about a decade, officials allowed her only a small ration of menstrual products, and she couldn’t afford extra pads from the commissary. She bartered with other women. On her worst days, she tore up her own T-shirts and used them as makeshift pads.

When she told officers she needed to see a doctor and couldn’t safely continue a mandatory kitchen shift, she said, she was placed in solitary confinement. She eventually found out that her heavy bleeding was caused by cysts.

“I didn’t have enough napkins to use during my period. … No matter what you say, they don’t care,” recalled Faneite, who was released from prison in 2006 and went on to found the prison reentry nonprofit YG Institute.

Her experience echoes what researchers, advocates and formerly incarcerated people describe across prisons and jails nationwide: Even where menstrual products are available, limited supplies, low-quality products, strict disciplinary rules and delays in medical care can result in incarcerated people facing potentially avoidable health issues or disciplinary write-ups.

Access to menstrual products also has been a persistent issue in immigration detention centers, with recent reports and lawsuits alleging that women in some facilities have been unable to obtain or outright denied feminine hygiene products despite federal standards and law requiring sufficient and timely access.

A new report from the Prison Policy Initiative, a research and advocacy organization, says that menstruation is still regularly treated as a disciplinary matter — through contraband rules, work violations and sanitation write-ups — even in prisons and jails that provide free products.

These disciplinary actions can affect everything from parole eligibility to access to programming and services.

Women make up a growing share of the state prison population, which rose about 5% nationwide from 2022 to 2023, according to the latest data from the federal Bureau of Justice Statistics.

In recent years, more states have begun taking steps to improve access to menstrual products in jails and prisons, and to address the overall conditions that shape incarcerated women’s experiences.

The Ohio legislature last month passed legislation to strengthen access to period products for incarcerated people in jails and prisons. The bill is awaiting the governor’s signature. And Wisconsin lawmakers introduced a bill on the issue this month.

At least 24 states and Washington, D.C., require that people in state prisons or local jails have free access to menstrual products, according to the National Conference of State Legislatures. Federal correctional facilities have provided free products since 2017.

More than a dozen states have passed versions of the Dignity of Incarcerated Women Act, which includes provisions to improve basic conditions, such as access to and the quality of period products and pregnancy care.

Still, in most of the country, access depends on a patchwork of laws and corrections department policies. Nearly every state has a rule on the books about providing menstrual products, but the specifics, implementation and enforcement vary widely. Advocates say that leaves many incarcerated people without the consistent access they need.

“In the system that we have where there’s very little oversight, accountability, transparency, you have no easy way of enforcement,” said Miriam Vishniac, the founder and director of the Prison Flow Project, a database tracking access to menstrual products in U.S. jails and prisons.

In Alabama, the state Department of Corrections says it provides menstrual products — pads and tampons — free of charge. People can choose a monthly allotment of 30 pads, 30 tampons or a mix of both. Housing unit staff keep small supplemental supplies on hand and can issue additional products as needed, according to Rand Champion, the agency’s chief of communications.

In Colorado, corrections officials said staff are prohibited from using access to menstrual products as a behavior-management tool, and facilities are required to keep products stocked and available regardless of an individual’s financial status.

Maryland’s policy requires correctional facilities to provide menstrual products at no cost during admission or transfer, on a monthly basis and upon request. The state says it offers tampons, winged pads, and both light- and heavy-flow pads. The products must be provided in quantities appropriate to each person’s health needs. Corrections officials told Stateline there have been no recent challenges with implementation.

In the months after a Maryland law requiring correctional facilities to provide free menstrual products and maintain a sufficient supply took effect in 2018, advocates said women at the Correctional Institution for Women were still paying for tampons and relying on flimsy pads handed out each month. State officials acknowledged the policy was not being implemented consistently systemwide.

Rules and restrictions

The new report from the Prison Policy Initiative outlines several ways that prison and jail rules can indirectly penalize people who menstruate.

Some facilities classify having more pads or tampons than the allowed number as contraband, which can lead to confiscation or formal disciplinary actions. Rules on property and hygiene mean that leaking through uniforms or bedding may be treated as a violation.

Asking for additional menstrual products can sometimes be interpreted as abusing medical rules or “feigning illness.” And trading or sharing products with other incarcerated people may also be prohibited under unauthorized exchange rules, the report said.

“It’s just another reminder that they have no autonomy over themselves, over their bodies, over their lives,” said Alycia Welch, the associate director of the Prison and Jail Innovation Lab at the University of Texas at Austin.

Access is further complicated by shower schedules and clothing allocations, which can make it difficult to change products regularly. Items available for purchase at the commissary — including pads, tampons and pain relief — are often costly.

Transgender men, nonbinary people and older women who menstruate or experience irregular cycles may face additional scrutiny or confusion from staff when requesting menstrual products, creating further barriers, according to prison policy experts.

Disciplinary actions can include fines, loss of commissary privileges, restrictions on phone or visitation access or placement in segregation units.

Many advocates and formerly incarcerated people say that even in facilities that provide free menstrual products, the supplies are often of poor quality, with thin pads and low-absorbency tampons.

“We can’t just stop at creating these rules that mandate that people have access to these products,” Vishniac, of the Prison Flow Project, said. “There needs to be some kind of way of ensuring that it’s actually happening.”

Strengthening access in Ohio

The bill Ohio lawmakers unanimously passed would require that all incarcerated women in state or local correctional facilities have free access to feminine hygiene products. It also would mandate that facilities allow incarcerated women to shower once per day while menstruating.

The bill also would require safe, designated disposal containers for used menstrual products and prohibit denial of products based on race, sex, income, charge, disability or other protected traits and identities.

In 2022, the Ohio Department of Rehabilitation and Correction adopted a new policy requiring state prisons (but not jails) to provide free menstrual products; advocates, however, say there’s no mechanism to hold staff or facilities accountable.

While the bill does not lay out an explicit oversight mechanism, its language would give incarcerated women a clear legal standard they can reference if access is denied, said Kayelin Tiggs, an advocate who helped author the bill’s language. Tiggs created the Ohio Coalition for Menstrual Equity.

“The fact that we were able to pass it here with that anti-discrimination language is a good sign,” Tiggs said. “I feel like we could take this nationally.”

Stateline reporter Amanda Watford can be reached at ahernandez@stateline.org.

©2025 States Newsroom. Visit at stateline.org. Distributed by Tribune Content Agency, LLC.

Born 11 minutes after midnight at Lehigh Valley Hospital-Cedar Crest, Isabella Mia Bourdier-Corneil weighed in at 7 pounds, 10 ounces and measured 21 inches in length.

Parents Carissa Corneil and Victor Caraballo-Bourdier of Zionsville were the first family within the Jefferson Health Lehigh Valley network to welcome a 2026 baby, with four other local families celebrating arrivals between midnight and 4 a.m.

Ja’coby Asher Roberson arrived at 1:11 a.m. at St. Luke’s-Anderson Campus in Bethlehem Township. Parents Kobie Smith and Brian Roberson celebrated the birth of their son, who weighed 8 pounds, 6 ounces, and measured 21 inches in length.

While the family had been anticipating a New Year’s birth, they didn’t expect their first child’s time of birth to echo the month and day.

“Due date was actually Jan. 1st, so it was kind of perfect,” Smith said of the 1:11 a.m. birth on 1/1.

Being a new mother is a blessing, Smith said.

“I’m just grateful for the whole process,” Smith said, “and for everything — for him being healthy, and me also being healthy and him being the first baby of 2026.”

After the early morning birth and a photo shoot, the family is resting and recuperating, St. Luke’s spokesperson Wendy Kaiser said.

“We’re excited for the family,” Kaiser said.

Check back for updates.

The new year is a time when many try to start new good habits and commit to improving health and wellness.

But resolutions, lofty as they may be, can turn daunting quickly with all the advice and sometimes contradicting information coming at you from news reports, advertisers, influencers, friends and even politicians.

But they don’t have to be.

This year, The Associated Press got the downlow on all manner of health and wellness claims and fads. The good news is that the experts mostly say to keep it simple.

As 2026 arrives, here’s what you can skip, what you should pay attention to and how to get credible information when you are inevitably faced with more confusing claims next year.

Protein and fiber are important, but you probably don’t need to pay more

When it comes to your diet, experts say most people can skip the upcharge. If you’re eating enough, you’re probably getting enough protein and don’t need products that promise some big boost.

And it’s true that most people could use more fiber in their diets. But, please, ditch the “fiber-maxxing” trend. Instead, eat whole foods such as fruits, vegetables, beans and whole grains.

A good skin care routine is not expensive or complicated

That 20-step skin care routine and $200 serum some TikToker sold you on? Dermatologists say you really don’t need it. Stay away from the beef tallow and slather on a good sunscreen instead (yes, even if you have darker skin ), they say.

And the same rule for simplicity applies to that hourlong “everything shower.” The best showers are simple and short, dermatologists say, no “double cleansing” required.

There are many simple ways to get that workout in

If the gym and all its equipment feel intimidating, you can drop the illusion that a good workout requires either. This year, the comeback of calisthenics put the focus back on no frills, bodyweight workouts you can do in the comfort of home. Research shows calisthenics helps with muscle strength and aerobic conditioning. You may eventually need weightlifting or other equipment, but it is a great place to start to build consistency and confidence.

Be wary of wellness fads and treatments — they are often too good to be true

Even if you imbibe too much this New Year’s Eve, doctors say you can do without “IV therapy” which have vitamins you can get more easily and cheaper in pill form — if you even need more, which is unlikely if you have a balanced diet. You’re pretty much just paying for “expensive urine,” one doctor said.

Same for “wellness” focused products like microbiome testing kits that generate information that doctors can’t actually act on. And if you don’t have diabetes, there’s scant evidence that you need a continuous glucose monitor.

To improve your health, go back to the basics

The idea of a panacea pill, product or routine can be enticing. But science already knows a lot about how to improve mental and physical health, and they are tried and true:

1. Whether you’re in the city or the country — walk more. Research shows walking is great for physical and mental health. It’s so good for you, doctors are literally prescribing time in the outdoors to their patients.

2. Take steps to get certain health metrics under control, like high blood pressure, which often goes undiagnosed and is known to cause a range of health problems down the road. Prioritize getting enough sleep, and make sure your family does too. Don’t just eat right — eat slower.

3. Give your mind some care too. Set better boundaries with your technology and regain and retrain your attention span. Build out your social networks and invest in all forms of love for the people around you.

These lifestyle changes don’t just make you feel better in the moment. Research shows they impact your life for years to come, by lowering the risk of dementia and many other health issues.

Don’t know who to trust? Start with your doctor

It can be tough to know who to listen to about your health, faced with compelling personal stories on social media from people who swear something worked from them, or clever marketing and advertising from companies that scare you or promise an easy fix.

Doubts have been raised this year about established medicine, including the safety of food dyes, fluoride dental treatments,hepatitis B shot for newborns, and hormone therapies for menopause.

While the medical system is not perfect, your doctor remains the best person to talk to about prevention, health concerns and potential treatments.

If you can’t get to a human doctor and turn to Dr. Google instead, be sure to follow these tips and never use it to diagnose yourself. When you do get that doctor’s appointment, you can make the most of it by bringing a list of written questions — and don’t hesitate to ask for any clarification you need.

The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.

WASHINGTON (AP) — Flu is rising rapidly across the U.S., driven by a new variant of the virus — and cases are expected to keep growing with holiday travel.

That variant, known as “subclade K,” led to early outbreaks in the United Kingdom, Japan and Canada. In the U.S., flu typically begins its winter march in December. On Tuesday, the Centers for Disease Control and Prevention reported high or very high levels of illness in more than half the states.

The CDC estimated there have been at least 7.5 million illnesses, 81,000 hospitalizations and 3,100 deaths from flu so far this season. That includes at least eight child deaths — and is based on data as of Dec. 20, before major holiday gatherings.

Some states are particularly hard-hit. New York’s health department said the week ending Dec. 20 marked the most flu cases the state had recorded in a single week since 2004: 71,000.

It’s far too soon to know if this flu season will be as severe as last winter’s.

But it’s not too late to get a flu shot, which health experts say can still prevent severe illness even if someone gets infected. While this year’s vaccine isn’t a perfect match to the subclade K strain, a preliminary analysis from the U.K. found it offered at least partial protection, lowering people’s risk of hospitalization.

According to the CDC, only about 42% of adults and children have gotten a flu vaccination so far this year.

What is subclade K flu?

The flu virus is a shape-shifter, constantly mutating, and it comes in multiple forms. There are two subtypes of Type A flu, and subclade K is a mutated version of one of them, named H3N2. That H3N2 strain is always harsh, especially for older adults.

Subclade K’s mutations aren’t enough of a change to be considered an entirely new kind of flu.

But they’re different enough to evade some of the protection from this year’s vaccine, said Andrew Pekosz, a virus expert at Johns Hopkins Bloomberg School of Public Health.

Will subclade K make people sicker?

The CDC said it’s too soon to know how severe this season will be.

Flu seasons dominated by any version of H3N2 tend to be bad, with more infections overall and more people becoming seriously ill. But Hopkins’ Pekosz cautioned it will take time to tease apart whether this subclade K version simply spreads more easily or also is more dangerous.

That question aside, the CDC notes there are some prescription medicines to treat flu — usually recommended for people at high risk of complications. But they generally need to be started a day or two after symptoms begin.

Who needs a flu vaccine?

The CDC and major medical societies all recommend a flu vaccine for just about everyone age 6 months and older. Despite lots of recent misinformation and confusion about vaccines, the flu recommendations haven’t changed.

Flu is particularly dangerous for people 65 and older, pregnant women, young children and people of any age who have chronic health problems, including asthma, diabetes, heart disease and weak immune systems.

The vaccines are brewed to protect against three influenza strains. Despite concern over that new H3N2 variant, they appear to be a good match against H1N1 and Type B flu that may also circulate this year, Pekosz said.

There are shots for all ages, as well as the nasal spray FluMist for ages 2 to 49. For the first time this year, some people may be eligible to vaccinate themselves with FluMist at home.

The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.

Then, when she turned 2, the seizures started. She suddenly began to lose skills. Three months later, Everly needed a feeding tube. Now, at 8, she can only move her eyes, allowing her to communicate via a screen.

Everly, whose family lives in Fort Collins, Colorado, has a rare mutation in a gene called FRRS1L, pronounced “frizzle,” which affects how cells in her brain communicate. Her parents, and other members of the tiny community of children with the condition, have worked with researchers and small-scale manufacturers to develop a treatment that could restore some of her ability to move — but only if they can raise $4 million to develop and test it.

Everly clearly understands what happens around her and loves school, where she learns in a mainstream classroom with support and has several best friends, said Chrissy Green, Everly’s mother. Still, she wants to do things she can’t, such as holding toys on her own or going on the occasional family trip with her brothers, Green said.

“These kids are in there, they want to play like other kids, they just can’t move,” she said.

Green is co-president of the foundation Finding Hope for FRRS1L, which is collecting funds for the next stage of drug development. Children with FRRS1L gene disorder, the foundation’s website says, “are trapped in a body they can’t move, however still retain high cognitive function, understanding, communication and awareness.”

Worldwide, only a few dozen children currently have a diagnosis of the same mutation in FRRS1L, meaning there’s little interest from drug companies. Families are on their own to fund research and, if all goes well, convince the U.S. Food and Drug Administration that the treatment is safe and effective enough to go on the market.

And, even if they succeed with the FDA, they’ll still face a battle with insurance companies that may not want to pay the steep price for a drug to correct a faulty gene. (Even though the families aren’t looking to make a profit, these types of treatments are expensive, and the company under contract to do the manufacturing isn’t doing it for free.)

Gene therapy involves replacing a faulty gene with a healthy one, usually via a harmless virus engineered to insert a specific snippet of genetic code. It has offered a new way to treat infants born without functioning immune systems, who previously relied on bone marrow transplants. Trials have also shown good results with a liver problem causing ammonia to build up in the body, and one form of inherited deafness.

The technology also carries risks. Patients have died after receiving gene therapies, with liver problems emerging as a potential risk.

Normally, drug companies take on the financial risk of turning basic research that’s often publicly funded into treatments, with the hope of eventually making a profit. For gene therapies, that model can break down because of the small number of patients. Green’s FRRS1L foundation knows of about three dozen patients worldwide, though other children with unexplained seizures could have the mutation.

A drug that treats so few patients will never be profitable, so parents are largely on their own in trying to fund research and development, said Neil Hackett, a researcher who has worked with families on gene therapies and advised the FRRS1L foundation. Usually, they can’t do it unless they happen to have one or more business-savvy parents with the time and resources to run a foundation while caring for a child with complex needs, he said.

“They need specific expertise, which is not easy to find, and they need massive amounts of money,” he said.

When they first received Everly’s diagnosis, her doctor told the family to make the most of the time they had left, because medicine couldn’t offer anything to extend her life or reduce her symptoms, Green said. She didn’t initially question that, but focused on loving her daughter and trading tips for daily life with other families via Facebook.

Green connected with a mother in London who had a child the same age as Everly. Viviana Rodriguez was exploring whether researchers had found any evidence to suggest they could repurpose existing drugs to reduce FRRS1L symptoms.

Through a “providential” series of events, one of Rodriguez’s contacts knew a doctor at the University of Texas Southwestern Medical Center who worked on gene therapies. That doctor had read a paper from a German researcher who bred mice with the FRSS1L mutation so he could study it. The German scientist had given the mice a gene therapy as part of his experiments, but his work wasn’t focused on the clinical applications, Green said.

Green and Rodriguez, along with a small group of other parents, formed the foundation to raise $400,000 for the UT Southwestern researchers to breed their own group of FRSS1L mice and give them a gene therapy in a study that was set up to show results. The mice that received the gene therapy had near-normal movement after it took effect, she said.

“We saw major recovery in the animals, so we’re really hopeful for our kids,” she said.

The next step was testing for toxic side effects, then finding a manufacturer who could do the complicated work of inserting the corrected gene into a harmless virus, Green said. If they can raise the necessary money and all goes as expected, children could receive their doses through a clinical trial starting in September, she said.

Many treatments that look promising in mice don’t pan out in humans. Even if they do, foundations must navigate the complex process of getting permission from the FDA to sell the treatment, Hackett said. Then they face the separate battle of convincing insurance companies, or national health systems serving patients in other countries, that they should pay for it, he said.

Theoretically, a foundation could keep a treatment in reserve for patients diagnosed with the FRSS1L mutation in the future, but that likely isn’t feasible, Hackett said.

“At the end, I think you have to turn it over to a commercial entity, and I don’t think anyone knows what that looks like,” he said.

Green is hopeful, however, that the treatment she’s trying to fund will not only help children like Everly, but also ease the path for future gene therapies.

“All the diseases can kind of help each other move forward,” she said.

Starting Thursday, Americans in five states who get government help paying for groceries will see new restrictions on soda, candy and other foods they can buy with those benefits.

Indiana, Iowa, Nebraska, Utah and West Virginia are the first of at least 18 states to enact waivers prohibiting the purchase of certain foods through the Supplemental Nutrition Assistance Program, or SNAP.

It’s part of a push by Health Secretary Robert F. Kennedy Jr. and Agriculture Secretary Brooke Rollins to urge states to strip foods regarded as unhealthy from the $100 billion federal program — long known as food stamps — that serves 42 million Americans.

“We cannot continue a system that forces taxpayers to fund programs that make people sick and then pay a second time to treat the illnesses those very programs help create,” Kennedy said in a statement in December.

The efforts are aimed at reducing chronic diseases such as obesity and diabetes associated with sweetened drinks and other treats, a key goal of Kennedy’s Make America Healthy Again effort.

But retail industry and health policy experts said state SNAP programs, already under pressure from steep budget cuts, are unprepared for the complex changes, with no complete lists of the foods affected and technical point-of-sale challenges that vary by state and store. And research remains mixed about whether restricting SNAP purchases improves diet quality and health.

The National Retail Federation, a trade association, predicted longer checkout lines and more customer complaints as SNAP recipients learn which foods are affected by the new waivers.

“It’s a disaster waiting to happen of people trying to buy food and being rejected,” said Kate Bauer, a nutrition science expert at the University of Michigan.

A report by the National Grocers Association and other industry trade groups estimated that implementing SNAP restrictions would cost U.S. retailers $1.6 billion initially and $759 million each year going forward.

“Punishing SNAP recipients means we all get to pay more at the grocery store,” said Gina Plata-Nino, SNAP director for the anti-hunger advocacy group Food Research & Action Center.

The waivers are a departure from decades of federal policy first enacted in 1964 and later authorized by the Food and Nutrition Act of 2008, which said SNAP benefits can be used for “any food or food product intended for human consumption,” except alcohol and ready-to-eat hot foods. The law also says SNAP can’t pay for tobacco.

In the past, lawmakers have proposed stopping SNAP from paying for expensive meats like steak or so-called junk foods, such as chips and ice cream.

But previous waiver requests were denied based on USDA research concluding that restrictions would be costly and complicated to implement, and that they might not change recipients’ buying habits or reduce health problems such as obesity.

Under the second Trump administration, however, states have been encouraged and even incentivized to seek waivers – and they responded.

“This isn’t the usual top-down, one-size-fits-all public health agenda,” Indiana Gov. Mike Braun said when he announced his state’s request last spring. “We’re focused on root causes, transparent information and real results.”

The five state waivers that take effect Jan. 1 affect about 1.4 million people. Utah and West Virginia will ban the use of SNAP to buy soda and soft drinks, while Nebraska will prohibit soda and energy drinks. Indiana will target soft drinks and candy. In Iowa, which has the most restrictive rules to date, the SNAP limits affect taxable foods, including soda and candy, but also certain prepared foods.

“The items list does not provide enough specific information to prepare a SNAP participant to go to the grocery store,” Plata-Nino wrote in a blog post. “Many additional items — including certain prepared foods — will also be disallowed, even though they are not clearly identified in the notice to households.”

Marc Craig, 47, of Des Moines, said he has been living in his car since October. He said the new waivers will make it more difficult to determine how to use the $298 in SNAP benefits he receives each month, while also increasing the stigma he feels at the cash register.

“They treat people that get food stamps like we’re not people,” Craig said.

SNAP waivers enacted now and in the coming months will run for two years, with the option to extend them for an additional three, according to the Agriculture Department. Each state is required to assess the impact of the changes.

Health experts worry that the waivers ignore larger factors affecting the health of SNAP recipients, said Anand Parekh, a medical doctor who is the chief health policy officer at the University of Michigan School of Public Health.

“This doesn’t solve the two fundamental problems, which is healthy food in this country is not affordable and unhealthy food is cheap and ubiquitous,” he said.

The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.

WASHINGTON (AP) — In the whirlwind first year of President Donald Trump’s second term, some of the most polarizing changes have taken place within the Department of Health and Human Services, where Robert F. Kennedy Jr. has openly rebuffed the medical establishment as he converts the ideas of his Make America Healthy Again movement into public policy.

Since entering office in February, the health secretary has overseen a dramatic reshaping of the agencies he oversees, including eliminating thousands of jobs and freezing or canceling billions of dollars for scientific research. As part of his campaign against chronic disease, he has redrawn the government’s position on topics such as seed oils, fluoride and Tylenol. He also has repeatedly used his authority to promote discredited ideas about vaccines.

The department’s rapid transformation has garnered praise from MAHA supporters who say they long viewed HHS as corrupt and untrustworthy and have been waiting for such a disruption. And both Democrats and Republicans have applauded some of the agency’s actions, including efforts to encourage healthy eating and exercise, and deals to lower the prices of costly drugs.

But many of the drastic changes Kennedy has led at the department are raising grave concerns among doctors and public health experts.

“At least in the immediate or intermediate future, the United States is going to be hobbled and hollowed out in its scientific leadership,” said Lawrence Gostin, a Georgetown University public health law professor who was removed from a National Institutes of Health advisory board earlier this year with a letter that said he was no longer needed. “I think it will be extraordinarily difficult to reverse all the damage.”

HHS spokesperson Andrew Nixon denied any threat to scientific expertise at the agency and lauded its work.

“In 2025, the Department confronted long-standing public health challenges with transparency, courage, and gold-standard science,” Nixon said in a statement. “HHS will carry this momentum into 2026 to strengthen accountability, put patients first, and protect public health.”

The overhaul comes alongside broader uncertainties in the nation’s health system, including Medicaid cuts passed by Congress this year and expiring Affordable Care Act subsidies that are putting millions of Americans’ insurance coverage in jeopardy.

Here’s a closer look at Kennedy’s first year leading the nation’s health agency:

Kennedy’s vaccine views ripple across the department

After many years spent publicly assailing vaccines, Kennedy sought during his confirmation process to reassure senators he wouldn’t take a wrecking ball to vaccine science. But less than a year later, his health department has repeatedly pushed the limits of those commitments.

In May, Kennedy announced the Centers for Disease Control and Prevention would no longer recommend COVID-19 vaccines for healthy children and pregnant women — a move immediately questioned by public health experts who saw no new data to justify the change.

In June, Kennedy fired an entire 17-member CDC vaccine advisory committee — later installing several of his own replacements, including multiple vaccine skeptics.

That group has made decisions that have shocked medical professionals, including declining to recommend COVID-19 shots for anyone, adding new restrictions on a combination shot against chickenpox, measles, mumps and rubella and reversing the longstanding recommendation that all babies receive a hepatitis B shot at birth.

Kennedy in November also personally directed the CDC to abandon its position that vaccines do not cause autism, without supplying any new evidence to support the change. While he left the old language on the website to keep a promise he made to Republican Sen. Bill Cassidy, he added a disclaimer saying it remained because of the agreement.

Public health researchers and advocates strongly refute the updated website and note that scientists have thoroughly explored the issue in rigorous research spanning decades, all pointing to the same conclusion that vaccines don’t cause autism.

Kennedy has promised a wide-ranging effort to study environmental factors that potentially contribute to autism and in an Oval Office event with Trump in September promoted unproven and in some cases discredited ties between Tylenol, vaccines and the complex brain disorder.

Kennedy reconfigures HHS with massive staffing and research cuts

Within two months of taking office, Kennedy announced a sweeping restructuring of HHS that would shut down entire agencies, consolidate others into a new one focused on chronic disease and lay off some 10,000 employees on top of 10,000 others who had already taken buyouts.

While parts of the effort are still tied up in court, thousands of the mass layoffs were allowed to stand. Those and voluntary departures significantly thinned out the sprawling $1.7 trillion department, which oversees food and hospital inspections, health insurance for roughly half of the country and vaccine recommendations.

Kennedy also has fired or forced out several leaders at HHS, among them four directors at the National Institutes of Health, the Food and Drug Administration’s former vaccine chief and a director of the CDC whom he had hired less than a month earlier.

On top of staffing cuts, he has overseen significant cuts to scientific research. That includes NIH slashing billions of dollars in research projects and the termination of $500 million in contracts to develop vaccines using mRNA technology.

Amid the cuts, Kennedy has proposed or funded some new research on topics related to his MAHA goals, including autism, Lyme disease and food additives.

MAHA gains momentum, despite some stumbles

Kennedy started using the phrase “MAHA” on the campaign trail last year to describe his crusade against toxic exposures and childhood chronic disease, but 2025 was the year it became ingrained in the national lexicon.

In his tenure so far, the health secretary has made it the centerpiece of his work, using the MAHA branding to wage war on ultra-processed foods, pressure companies to phase out artificial food dyes, criticize fluoride in drinking water and push to ban junk food from the program that subsidizes grocery store runs for low-income Americans.

The idea has even spread beyond Kennedy’s agency across the federal government.

Defense Secretary Pete Hegseth has appeared with Kennedy to promote fitness with pull-up displays. Transportation Secretary Sean Duffy teamed up with Kennedy in early December to announce $1 billion in funding for airports to install resources like playgrounds and nursing pods for mothers and babies. And Environmental Protection Agency administrator Lee Zeldin recently announced he is working toward unveiling a MAHA agenda with health-related goals for his own department.

MAHA has earned widespread popularity among the American public — even as it has endured some administration foibles. In May, for example, HHS faced scrutiny for releasing a MAHA report that contained several citations to studies that didn’t exist.

But to the extent that the initiative has included calls to action that aren’t based on science — such as urging distrust in vaccines or promoting raw milk, which is far more likely than pasteurized milk to lead to illness — critics say it can be dangerous.

WASHINGTON, D.C. — Possible E. coli contamination has led to the recall of a food product distributed to retailers in several states, according to the U.S. Department of Agriculture’s Food Safety and Inspection Service.

Mountain West Food Group LLC, an Idaho-based company, is recalling about 2,855 pounds of raw ground beef after routine testing by the department’s FSIS detected E. coli O26. The product was produced Dec. 16 and shipped to distributors in California, Colorado, Idaho, Montana, Pennsylvania and Washington.

The recall involves one-pound vacuum-sealed packages labeled “Forward Farms Grass-Fed Ground Beef” with a use-or-freeze-by date of Jan. 13 of next year. The packages have establishment number “EST. 2083,” which appears on the side of the packaging, the recall said.

No illnesses have been confirmed in connection with the recalled product, according to federal officials, but consumers are urged to check their refrigerators and freezers and avoid consuming it.

According to health experts, E. coli O26 is a strain of Shiga toxin-producing E. coli that can cause symptoms such as diarrhea, vomiting and abdominal cramps. In some cases, infections can lead to more serious complications, particularly in young children, older adults and people with weakened immune systems.

Consumers who purchased the recalled product should throw it away or return it to the place of purchase.

Officials also advised consumers to follow safe food-handling practices and ensure raw meat products are cooked to an internal temperature of 160 degrees Fahrenheit using a food thermometer.

©2025 Advance Local Media LLC. Visit cleveland.com. Distributed by Tribune Content Agency, LLC.

Many consumers feel pride in avoiding the glazed pastries in the supermarket and instead opting for “all natural” granola that comes packed with extra protein. Same goes for low-fat yogurts “made with real fruit,” “organic” plant-based milks and bottled “superfood” smoothies.

Buyer beware: Healthy grocery buzzwords like those often cover up an unhealthy amount of sugar.

Added sugars are difficult to quickly spot because many companies use clever marketing to distract consumers, said Nicole Avena, a professor of neuroscience and psychiatry at Mount Sinai Medical School and Princeton University who has studied added sugars.

Avena said while some health-forward brands know people are starting to become aware of the hazards of added sugars, “a lot of the bigger brands don’t worry so much about people’s health.”

Here’s how to spot hidden sugars and what to do about it.

What to look for

Along with saturated fat and salt, eating excess sugar is linked to heart disease, obesity, diabetes and other health risks.

The average American consumes 17 teaspoons of added sugar a day, which adds up to 57 pounds per year, according to the American Heart Association. About half of that comes from beverages, but much of the rest is sneaked into cereal, salsa, prepared sandwiches, dairy products, bottled sauces and baked goods, including many brands of whole-grain bread.

To help control sugar intake, start by checking the nutrition label. Since 2021, food companies have been required to list the quantity of added sugars separately from total sugar content. But the plan backfired, Avena said.

Companies reduced common sweeteners like refined beet sugar and high-fructose corn syrup but added alternatives, such as monk fruit and the sugar alcohol erythritol, which aren’t considered “added sugars” under FDA regulations.

“Now our foods are even more sweet than they were back in 2020,” Avena said.

What should you do?

Collin Popp, a dietitian and professor at NYU Langone Health, said the current FDA recommendation allows for some flexibility. People should get no more than 10% of their calories from added sugar, which amounts to about 50 grams per day if eating 2,000 calories, or a bit more than what’s in a typical can of soda.

But that might be too flexible, Popp said.

“I would actually like to see that be less than 5%, and closer to zero for some, if they have diabetes or prediabetes,” he said.

The key is to be mindful of what you’re eating, even if the product seems healthy or if the package is labeled organic, Popp said. Roasted nuts, plant-based milks and wasabi peas, for example, can include a surprising amount of added sugars. So can English muffins and Greek yogurt.

One Chobani black cherry yogurt, for example, has zero grams of fat but 9 grams of added sugar, or more than 2 teaspoons. Silk brand almond milk has 7 grams per cup.

Popp recommends taking control of how much sugar goes into your food. That could mean buying plain yogurt and adding honey or berries, or asking the barista if you can put your own oat milk into your coffee.

Taking from one column to add to another

Although they lower the calorie content of foods, artificial sweeteners like stevia and sugar alcohols may not be better because they can encourage people to overeat, Avena said. She said research shows that sweet flavors are what activate the reward center of the brain, not the sugar itself.

That’s not to write off sugar alternatives, including allulose for people with Type 1 diabetes since it doesn’t affect blood sugar.

But for the general public, minimizing dependence on the overall sweetness of food is key to improving health, she said.

“Don’t let the food companies decide how much sugar you’re eating,” Avena said.

Albert Stumm writes about food, travel and wellness. Find his work at www.albertstumm.com.