Avocado, Coconut & Lime Crumble Pots

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This one’s a refreshing snack or dessert, whose ingredients come together to make a very good essential fatty acid supplement. Coconut is a good source of MCTs, avocados are rich in omega 3, 6, and 9, while chia seeds are a great ALA omega 3 food, topping up the healthy balance.

You will need

  • flesh of 2 large ripe avocados
  • grated zest and juice of 2 limes
  • 3 tbsp coconut oil
  • 1 tbsp chia seeds
  • 2 tsp honey (omit if you prefer a less sweet dish)
  • 1 tsp desiccated coconut
  • 4 low-sugar oat biscuits

Method

(we suggest you read everything at least once before doing anything)

1) Blend the avocado, lime juice, coconut oil, honey, and half the desiccated coconut, in a food processor.

2) Scoop the mixture into 4 ramekins (or equivalent-sized glasses), making sure to leave a ½” gap at the top. Refrigerate for at least 2–4 hours (longer is fine if you’re not ready to serve yet).

3) Assemble, by crumbling the oat biscuits and sprinkling on top of each serving, along with the other half of the desiccated coconut, the lime zest, and the chia seeds.

4) Serve immediately:

Enjoy!

Want to learn more?

For those interested in some of the science of what we have going on today:

Take care!

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  • Health Insurers Limit Coverage of Prosthetic Limbs, Questioning Their Medical Necessity

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    When Michael Adams was researching health insurance options in 2023, he had one very specific requirement: coverage for prosthetic limbs.

    Adams, 51, lost his right leg to cancer 40 years ago, and he has worn out more legs than he can count. He picked a gold plan on the Colorado health insurance marketplace that covered prosthetics, including microprocessor-controlled knees like the one he has used for many years. That function adds stability and helps prevent falls.

    But when his leg needed replacing last January after about five years of everyday use, his new marketplace health plan wouldn’t authorize it. The roughly $50,000 leg with the electronically controlled knee wasn’t medically necessary, the insurer said, even though Colorado law leaves that determination up to the patient’s doctor, and his has prescribed a version of that leg for many years, starting when he had employer-sponsored coverage.

    “The electronic prosthetic knee is life-changing,” said Adams, who lives in Lafayette, Colorado, with his wife and two kids. Without it, “it would be like going back to having a wooden leg like I did when I was a kid.” The microprocessor in the knee responds to different surfaces and inclines, stiffening up if it detects movement that indicates its user is falling.

    People who need surgery to replace a joint typically don’t encounter similar coverage roadblocks. In 2021, 1.5 million knee or hip joint replacements were performed in United States hospitals and hospital-owned ambulatory facilities, according to the federal Agency for Healthcare Research and Quality, or AHRQ. The median price for a total hip or knee replacement without complications at top orthopedic hospitals was just over $68,000 in 2020, according to one analysis, though health plans often negotiate lower rates.

    To people in the amputee community, the coverage disparity amounts to discrimination.

    “Insurance covers a knee replacement if it’s covered with skin, but if it’s covered with plastic, it’s not going to cover it,” said Jeffrey Cain, a family physician and former chair of the board of the Amputee Coalition, an advocacy group. Cain wears two prosthetic legs, having lost his after an airplane accident nearly 30 years ago.

    AHIP, a trade group for health plans, said health plans generally provide coverage when the prosthetic is determined to be medically necessary, such as to replace a body part or function for walking and day-to-day activity. In practice, though, prosthetic coverage by private health plans varies tremendously, said Ashlie White, chief strategy and programs officer at the Amputee Coalition. Even though coverage for basic prostheses may be included in a plan, “often insurance companies will put caps on the devices and restrictions on the types of devices approved,” White said.

    An estimated 2.3 million people are living with limb loss in the U.S., according to an analysis by Avalere, a health care consulting company. That number is expected to as much as double in coming years as people age and a growing number lose limbs to diabetes, trauma, and other medical problems.

    Fewer than half of people with limb loss have been prescribed a prosthesis, according to a report by the AHRQ. Plans may deny coverage for prosthetic limbs by claiming they aren’t medically necessary or are experimental devices, even though microprocessor-controlled knees like Adams’ have been in use for decades.

    Cain was instrumental in getting passed a 2000 Colorado law that requires insurers to cover prosthetic arms and legs at parity with Medicare, which requires coverage with a 20% coinsurance payment. Since that measure was enacted, about half of states have passed “insurance fairness” laws that require prosthetic coverage on par with other covered medical services in a plan or laws that require coverage of prostheses that enable people to do sports. But these laws apply only to plans regulated by the state. Over half of people with private coverage are in plans not governed by state law.

    The Medicare program’s 80% coverage of prosthetic limbs mirrors its coverage for other services. Still, an October report by the Government Accountability Office found that only 30% of beneficiaries who lost a limb in 2016 received a prosthesis in the following three years.

    Cost is a factor for many people.

    “No matter your coverage, most people have to pay something on that device,” White said. As a result, “many people will be on a payment plan for their device,” she said. Some may take out loans.

    The federal Consumer Financial Protection Bureau has proposed a rule that would prohibit lenders from repossessing medical devices such as wheelchairs and prosthetic limbs if people can’t repay their loans.

    “It is a replacement limb,” said White, whose organization has heard of several cases in which lenders have repossessed wheelchairs or prostheses. Repossession is “literally a punishment to the individual.”

    Adams ultimately owed a coinsurance payment of about $4,000 for his new leg, which reflected his portion of the insurer’s negotiated rate for the knee and foot portion of the leg but did not include the costly part that fits around his stump, which didn’t need replacing. The insurer approved the prosthetic leg on appeal, claiming it had made an administrative error, Adams said.

    “We’re fortunate that we’re able to afford that 20%,” said Adams, who is a self-employed leadership consultant.

    Leah Kaplan doesn’t have that financial flexibility. Born without a left hand, she did not have a prosthetic limb until a few years ago.

    Growing up, “I didn’t want more reasons to be stared at,” said Kaplan, 32, of her decision not to use a prosthesis. A few years ago, the cycling enthusiast got a prosthetic hand specially designed for use with her bike. That device was covered under the health plan she has through her county government job in Spokane, Washington, helping developmentally disabled people transition from school to work.

    But when she tried to get approval for a prosthetic hand to use for everyday activities, her health plan turned her down. The myoelectric hand she requested would respond to electrical impulses in her arm that would move the hand to perform certain actions. Without insurance coverage, the hand would cost her just over $46,000, which she said she can’t afford.

    Working with her doctor, she has appealed the decision to her insurer and been denied three times. Kaplan said she’s still not sure exactly what the rationale is, except that the insurer has questioned the medical necessity of the prosthetic hand. The next step is to file an appeal with an independent review organization certified by the state insurance commissioner’s office.

    A prosthetic hand is not a luxury device, Kaplan said. The prosthetic clinic has ordered the hand and made the customized socket that will fit around the end of her arm. But until insurance coverage is sorted out, she can’t use it.

    At this point she feels defeated. “I’ve been waiting for this for so long,” Kaplan 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.

    Subscribe to KFF Health News’ free Morning Briefing.

    This article first appeared on KFF Health News and is republished here under a Creative Commons license.

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  • Sleeping on Your Back after 50; Yay or Nay?

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    Sleeping Differently After 50

    Sleeping is one of those things that, at any age, can be hard to master. Some of our most popular articles have been on getting better sleep, and effective sleep aids, and we’ve had a range of specific sleep-related questions, like whether air purifiers actually improve your sleep.

    But perhaps there’s an underlying truth hidden in our opening sentence…is sleeping consistently difficult because the way we sleep should change according to our age?

    Inspired by Brad and Mike’s video below (which was published to their 5 million+ subscribers!), there are 4 main elements to consider when sleeping on your back after you’ve hit the 50-year mark:

    1. Degenerative Disk Disease: As you age, your spine may start to show signs of wear and tear, which directly affects comfort while lying on your back.
    2.  Sleep Apnea and Snoring: Sleep Apnea and snoring become more of an issue with age, and sleeping on your back can exacerbate these problems; when you sleep on your back, the soft tissues in your throat, as well as your tongue, “fall back” and partly obstruct your the airway.
    3.  Spinal Stenosis: Spinal Stenosis–the often-age-related narrowing of your spinal canal–can put pressure on the nerves that travel through the spine, which equally makes back-sleeping harder.
    4.  GERD: The all-too-familiar gastroesophageal reflux disease can be more problematic when lying flat on your back, as doing so can allow easy access for stomach acid to move upwards.

    Alternatives to Back Sleeping

    Referencing the Mayo Clinic’s Sleep Facility’s director, Dr. Virend Somers, today’s video suggests a simple solution: sleeping on your side. The video goes into a bit more detail but, as you know, here at 10almonds we like to cut to the chase. 

    Modifications for Back Sleeping

    If you’re a lifelong back-sleeping and cannot bear the idea of changing to your side, or your stomach, then there are a few modifications that you can make to ease any pain and discomfort.

    Most solutions revolve around either leg wedges or pillow adjustments. For instance, if you’re suffering from back pain, try propping your knees up. Or if GERD is your worst enemy, a wedge pillow could help keep that acid down.

    As can be expected, the video dives into more detail:

    How was the video? If you’ve discovered any great videos yourself that you’d like to share with fellow 10almonds readers, then please do email them to us!

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  • Psychoactive Drugs Are Having a Moment. The FDA Will Soon Weigh In.

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    Lori Tipton is among the growing number of people who say that MDMA, also known as ecstasy, saved their lives.

    Raised in New Orleans by a mother with untreated bipolar disorder who later killed herself and two others, Tipton said she endured layers of trauma that eventually forced her to seek treatment for crippling anxiety and hypervigilance. For 10 years nothing helped, and she began to wonder if she was “unfixable.”

    Then she answered an ad for a clinical trial for MDMA-assisted therapy to treat post-traumatic stress disorder. Tipton said the results were immediate, and she is convinced the drug could help a lot of people. But even as regulators weigh approval of the first MDMA-based treatment, she’s worried that it won’t reach those who need it most.

    “The main thing that I’m always concerned about is just accessibility,” the 43-year-old nonprofit project manager said. “I don’t want to see this become just another expensive add-on therapy for people who can afford it when people are dying every day by their own hand because of PTSD.”

    MDMA is part of a new wave of psychoactive drugs that show great potential for treating conditions such as severe depression and PTSD. Investors are piling into the nascent field, and a host of medications based on MDMA, LSD, psychedelic mushrooms, ketamine, the South American plant mixture ayahuasca, and the African plant ibogaine are now under development, and in some cases vying for approval by the Food and Drug Administration.

    Proponents hope the efforts could yield the first major new therapies for mental illness since the introduction of modern antidepressants in the 1980s. But not all researchers are convinced that their benefits have been validated, or properly weighed against the risks. And they can be difficult to assess using traditional clinical trials.

    The first MDMA-assisted assisted therapy appeared to be on track for FDA approval this August, but a recent report from an independent review committee challenged the integrity of the trial data from the drug’s maker, Lykos Therapeutics, a startup founded by a psychedelic research and advocacy group. The FDA will convene a panel of independent investigators on June 4 to determine whether to recommend the drug’s approval.

    Proponents of the new therapies also worry that the FDA will impose treatment protocols, such as requiring multiple trained clinicians to monitor a patient for extended periods, that will render them far too expensive for most people.

    Tipton’s MDMA-assisted therapy included three eight-hour medication sessions overseen by two therapists, each followed by an overnight stay at the facility and an integration session the following day.

    “It does seem that some of these molecules can be administered safely,” said David Olson, director of the University of California-Davis Institute for Psychedelics and Neurotherapeutics. “I think the question is can they be administered safely at the scale needed to really make major improvements in mental health care.”

    Breakthrough Therapies?

    Psychedelics and other psychoactive substances, among the medicines with the oldest recorded use, have long been recognized for their potential therapeutic benefits. Modern research on them started in the mid-20th century, but clinical trial results didn’t live up to the claims of advocates, and they eventually got a bad name both from their use as party drugs and from rogue CIA experiments that involved dosing unsuspecting individuals.

    The 1970 Controlled Substances Act made most psychoactive drugs illegal before any treatments were brought to market, and MDMA was classified as a Schedule 1 substance in 1985, which effectively ended any research. It wasn’t until 2000 that scientists at Johns Hopkins University were granted regulatory approval to study psilocybin anew.

    Ketamine was in a different category, having been approved as an anesthetic in 1970. In the early 2000s, researchers discovered its antidepressant effects, and a ketamine-based therapy, Spravato, received FDA approval in 2019. Doctors can also prescribe generic ketamine off-label, and hundreds of clinics have sprung up across the nation. A clinical trial is underway to evaluate ketamine’s effectiveness in treating suicidal depression when used with other psychiatric medications.

    Ketamine’s apparent effectiveness sparked renewed interest in the therapeutic potential of other psychoactive substances.

    They fall into distinct categories: MDMA is an entactogen, also known as an empathogen, which induces a sense of connectedness and emotional communion, while LSD, psylocibin, and ibogaine are psychedelics, which create altered perceptual states. Ketamine is a dissociative anesthetic, though it can produce hallucinations at the right dose.

    Despite the drugs’ differences, Olson said they all create neuroplasticity and allow the brain to heal damaged neural circuits, which imaging shows can be shriveled up in patients with addiction, depression, and PTSD.

    “All of these brain conditions are really disorders of neural circuits,” Olson said. “We’re basically looking for medicines that can regrow these neurons.”

    Psychedelics are particularly good at doing this, he said, and hold promise for treating diseases including Alzheimer’s.

    A number of psychoactive drugs have now received the FDA’s “breakthrough therapy” designation, which expedites development and review of drugs with the potential to treat serious conditions.

    But standard clinical trials, in which one group of patients is given the drug and a control group is given a placebo, have proven problematic, for the simple reason that people have no trouble determining whether they’ve gotten the real thing.

    The final clinical trial for Lykos’ MDMA treatment showed that 71% of participants no longer met the criteria for PTSD after 18 weeks of taking the drug versus 48% in the control group.

    A March report by the Institute for Clinical and Economic Review, an independent research group, questioned the company’s clinical trial results and challenged the objectivity of MDMA advocates who participated in the study as both patients and therapists. The institute also questioned the drug’s cost-effectiveness, which insurers factor into coverage decisions.

    Lykos, a public benefit company, was formed in 2014 as an offshoot of the Multidisciplinary Association for Psychedelic Studies, a nonprofit that has invested more than $150 million into psychedelic research and advocacy.

    The company said its researchers developed their studies in partnership with the FDA and used independent raters to ensure the reliability and validity of the results.

    “We stand behind the design and results of our clinical trials,” a Lykos spokesperson said in an email.

    There are other hazards too. Psychoactive substances can put patients in vulnerable states, making them potential victims for financial exploitation or other types of abuse. In Lykos’ second clinical trial, two therapists were found to have spooned, cuddled, blindfolded, and pinned down a female patient who was in distress.

    The substances can also cause shallow breathing, heart issues, and hyperthermia.

    To mitigate risks, the FDA can put restrictions on how drugs are administered.

    “These are incredibly potent molecules and having them available in vending machines is probably a bad idea,” said Hayim Raclaw of Negev Capital, a venture capital fund focused on psychedelic drug development.

    But if the protocols are too stringent, access is likely to be limited.

    Rachel del Dosso, a trauma therapist in the greater Los Angeles area who offers ketamine-assisted therapy, said she’s been following the research on drugs like MDMA and psilocybin and is excited for their therapeutic potential but has reservations about the practicalities of treatment.

    “As a therapist in clinical practice, I’ve been thinking through how could I make that accessible,” she said. “Because it would cost a lot for [patients] to have me with them for the whole thing.”

    Del Dosso said a group therapy model, which is sometimes used in ketamine therapy, could help scale the adoption of other psychoactive treatments, too.

    Artificial Intelligence and Analogs

    Researchers expect plenty of new discoveries in the field. One of the companies Negev has invested in, Mindstate Design Labs, uses artificial intelligence to analyze “trip reports,” or self-reported drug experiences, to identify potentially therapeutic molecules. Mindstate has asked the FDA to green-light a clinical trial of the first molecule identified through this method, 5-MeO-MiPT, also known as moxy.

    AlphaFold, an AI program developed by Google’s DeepMind, has identified thousands of potential psychedelic molecules.

    There’s also a lot of work going into so-called analog compounds, which have the therapeutic effects of hallucinogens but without the hallucinations. The maker of a psilocybin analog announced in March that the FDA had granted it breakthrough therapy status.

    “If you can harness the neuroplasticity-promoting properties of LSD while also creating an antipsychotic version of it, then that can be pretty powerful,” Olson said.

    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.

    Subscribe to KFF Health News’ free Morning Briefing.

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  • Flax Seeds vs Pumpkin Seeds – Which is Healthier?

    10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.

    Our Verdict

    When comparing flax seeds to pumpkin seeds, we picked the flax.

    Why?

    Looking at the macros first, they are equal on protein, and flax seeds have a lot more fiber while pumpkin seeds have a lot more carbs. We’re going to prioritise fiber over carbs and call this a win for flax.

    In terms of vitamins, flax seeds have a lot more of vitamins B1, B2, B3, B5, B6, B7, B9, C, E, K, and choline, while pumpkin seeds have a tiny bit more vitamin A. An easy win for flax here.

    When it comes to minerals, flax has multiples more calcium, copper, iron, magnesium, manganese, phosphorus, and selenium, while pumpkin seeds have more zinc. Another win for flax.

    Adding up the sections makes for a clear overall win for flax, but by all means enjoy either or both; diversity is good!

    Want to learn more?

    You might like to read:

    What’s Your Plant Diversity Score? ← seeds count as plants!

    Enjoy!

    Don’t Forget…

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  • Red Light, Go!

    10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.

    Casting Yourself In A Healthier Light

    In Tuesday’s newsletter, we asked you for your opinion of red light therapy (henceforth: RLT), and got the above-depicted, below-described, set of responses:

    • About 51% said “I have no idea whether light therapy works or not”
    • About 24% said “Red light therapy is a valuable skin rejuvenation therapy”
    • About 23% said “I have not previously heard of red light therapy”
    • One (1) person said: “Red light therapy is a scam to sell shiny gadgets”

    A number of subscribers wrote with personal anecdotes of using red light therapy to beneficial effect, for example:

    ❝My husband used red light therapy after surgery on his hand. It did seem to speed healing of the incision and there is very minimal scarring. I would like to know if the red light really helped or if he was just lucky❞

    ~ 10almonds subscriber

    And one wrote to report having observed mixed results amongst friends, per:

    ❝Some people it works, others I’ve seen it breaks them out❞

    ~ 10almonds subscriber

    So, what does the science say?

    RLT rejuvenates skin, insofar as it reduces wrinkles and fine lines: True or False?

    True! This one’s pretty clear-cut, so we’ll just give one example study of many, which found:

    ❝The treated subjects experienced significantly improved skin complexion and skin feeling, profilometrically assessed skin roughness, and ultrasonographically measured collagen density.

    The blinded clinical evaluation of photographs confirmed significant improvement in the intervention groups compared with the control❞

    ~ Dr. Alexander Wunsch & Dr. Karsten Matuschka

    Read in full: A Controlled Trial to Determine the Efficacy of Red and Near-Infrared Light Treatment in Patient Satisfaction, Reduction of Fine Lines, Wrinkles, Skin Roughness, and Intradermal Collagen Density Increase

    RLT helps speed up healing of wounds: True or False?

    True! There is less science for this than the above claim, but the studies that have been done are quite compelling, for example this NASA technology study found that…

    ❝LED produced improvement of greater than 40% in musculoskeletal training injuries in Navy SEAL team members, and decreased wound healing time in crew members aboard a U.S. Naval submarine.❞

    ~ Dr. Harry Whelan et al.

    Read more: Effect of NASA light-emitting diode irradiation on wound healing

    RLT’s benefits are only skin-deep: True or False?

    False, probably, but we’d love to see more science for this, to be sure.

    However, it does look like wavelengths in the near-infrared spectrum reduce the abnormal tau protein and neurofibrillary tangles associated with Alzheimer’s disease, resulting in increased blood flow to the brain, and a decrease in neuroinflammation:

    Therapeutic Potential of Photobiomodulation In Alzheimer’s Disease: A Systematic Review

    Would you like to try RLT for yourself?

    There are some contraindications, for example:

    • if you have photosensitivity (for obvious reasons)
    • if you have Lupus (mostly because of the above)
    • if you have hyperthyroidism (because if you use RLT to your neck as well as face, it may help stimulate thyroid function, which in your case is not what you want)

    As ever, please check with your own doctor if you’re not completely sure; we can’t cover all bases here, and cannot speak for your individual circumstances.

    For most people though, it’s very safe, and if you’d like to try it, here’s an example product on Amazon, and by all means do read reviews and shop around for the ideal device for you

    Take care! 😎

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    Learn to Age Gracefully

    Join the 98k+ American women taking control of their health & aging with our 100% free (and fun!) daily emails:

  • Overdosing on Chemo: A Common Gene Test Could Save Hundreds of Lives Each Year

    10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.

    One January morning in 2021, Carol Rosen took a standard treatment for metastatic breast cancer. Three gruesome weeks later, she died in excruciating pain from the very drug meant to prolong her life.

    Rosen, a 70-year-old retired schoolteacher, passed her final days in anguish, enduring severe diarrhea and nausea and terrible sores in her mouth that kept her from eating, drinking, and, eventually, speaking. Skin peeled off her body. Her kidneys and liver failed. “Your body burns from the inside out,” said Rosen’s daughter, Lindsay Murray, of Andover, Massachusetts.

    Rosen was one of more than 275,000 cancer patients in the United States who are infused each year with fluorouracil, known as 5-FU, or, as in Rosen’s case, take a nearly identical drug in pill form called capecitabine. These common types of chemotherapy are no picnic for anyone, but for patients who are deficient in an enzyme that metabolizes the drugs, they can be torturous or deadly.

    Those patients essentially overdose because the drugs stay in the body for hours rather than being quickly metabolized and excreted. The drugs kill an estimated 1 in 1,000 patients who take them — hundreds each year — and severely sicken or hospitalize 1 in 50. Doctors can test for the deficiency and get results within a week — and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk.

    Yet a recent survey found that only 3% of U.S. oncologists routinely order the tests before dosing patients with 5-FU or capecitabine. That’s because the most widely followed U.S. cancer treatment guidelines — issued by the National Comprehensive Cancer Network — don’t recommend preemptive testing.

    The FDA added new warnings about the lethal risks of 5-FU to the drug’s label on March 21 following queries from KFF Health News about its policy. However, it did not require doctors to administer the test before prescribing the chemotherapy.

    The agency, whose plan to expand its oversight of laboratory testing was the subject of a House hearing, also March 21, has said it could not endorse the 5-FU toxicity tests because it’s never reviewed them.

    But the FDA at present does not review most diagnostic tests, said Daniel Hertz, an associate professor at the University of Michigan College of Pharmacy. For years, with other doctors and pharmacists, he has petitioned the FDA to put a black box warning on the drug’s label urging prescribers to test for the deficiency.

    “FDA has responsibility to assure that drugs are used safely and effectively,” he said. The failure to warn, he said, “is an abdication of their responsibility.”

    The update is “a small step in the right direction, but not the sea change we need,” he said.

    Europe Ahead on Safety

    British and European Union drug authorities have recommended the testing since 2020. A small but growing number of U.S. hospital systems, professional groups, and health advocates, including the American Cancer Society, also endorse routine testing. Most U.S. insurers, private and public, will cover the tests, which Medicare reimburses for $175, although tests may cost more depending on how many variants they screen for.

    In its latest guidelines on colon cancer, the Cancer Network panel noted that not everyone with a risky gene variant gets sick from the drug, and that lower dosing for patients carrying such a variant could rob them of a cure or remission. Many doctors on the panel, including the University of Colorado oncologist Wells Messersmith, have said they have never witnessed a 5-FU death.

    In European hospitals, the practice is to start patients with a half- or quarter-dose of 5-FU if tests show a patient is a poor metabolizer, then raise the dose if the patient responds well to the drug. Advocates for the approach say American oncology leaders are dragging their feet unnecessarily, and harming people in the process.

    “I think it’s the intransigence of people sitting on these panels, the mindset of ‘We are oncologists, drugs are our tools, we don’t want to go looking for reasons not to use our tools,’” said Gabriel Brooks, an oncologist and researcher at the Dartmouth Cancer Center.

    Oncologists are accustomed to chemotherapy’s toxicity and tend to have a “no pain, no gain” attitude, he said. 5-FU has been in use since the 1950s.

    Yet “anybody who’s had a patient die like this will want to test everyone,” said Robert Diasio of the Mayo Clinic, who helped carry out major studies of the genetic deficiency in 1988.

    Oncologists often deploy genetic tests to match tumors in cancer patients with the expensive drugs used to shrink them. But the same can’t always be said for gene tests aimed at improving safety, said Mark Fleury, policy director at the American Cancer Society’s Cancer Action Network.

    When a test can show whether a new drug is appropriate, “there are a lot more forces aligned to ensure that testing is done,” he said. “The same stakeholders and forces are not involved” with a generic like 5-FU, first approved in 1962, and costing roughly $17 for a month’s treatment.

    Oncology is not the only area in medicine in which scientific advances, many of them taxpayer-funded, lag in implementation. For instance, few cardiologists test patients before they go on Plavix, a brand name for the anti-blood-clotting agent clopidogrel, although it doesn’t prevent blood clots as it’s supposed to in a quarter of the 4 million Americans prescribed it each year. In 2021, the state of Hawaii won an $834 million judgment from drugmakers it accused of falsely advertising the drug as safe and effective for Native Hawaiians, more than half of whom lack the main enzyme to process clopidogrel.

    The fluoropyrimidine enzyme deficiency numbers are smaller — and people with the deficiency aren’t at severe risk if they use topical cream forms of the drug for skin cancers. Yet even a single miserable, medically caused death was meaningful to the Dana-Farber Cancer Institute, where Carol Rosen was among more than 1,000 patients treated with fluoropyrimidine in 2021.

    Her daughter was grief-stricken and furious after Rosen’s death. “I wanted to sue the hospital. I wanted to sue the oncologist,” Murray said. “But I realized that wasn’t what my mom would want.”

    Instead, she wrote Dana-Farber’s chief quality officer, Joe Jacobson, urging routine testing. He responded the same day, and the hospital quickly adopted a testing system that now covers more than 90% of prospective fluoropyrimidine patients. About 50 patients with risky variants were detected in the first 10 months, Jacobson said.

    Dana-Farber uses a Mayo Clinic test that searches for eight potentially dangerous variants of the relevant gene. Veterans Affairs hospitals use a 11-variant test, while most others check for only four variants.

    Different Tests May Be Needed for Different Ancestries

    The more variants a test screens for, the better the chance of finding rarer gene forms in ethnically diverse populations. For example, different variants are responsible for the worst deficiencies in people of African and European ancestry, respectively. There are tests that scan for hundreds of variants that might slow metabolism of the drug, but they take longer and cost more.

    These are bitter facts for Scott Kapoor, a Toronto-area emergency room physician whose brother, Anil Kapoor, died in February 2023 of 5-FU poisoning.

    Anil Kapoor was a well-known urologist and surgeon, an outgoing speaker, researcher, clinician, and irreverent friend whose funeral drew hundreds. His death at age 58, only weeks after he was diagnosed with stage 4 colon cancer, stunned and infuriated his family.

    In Ontario, where Kapoor was treated, the health system had just begun testing for four gene variants discovered in studies of mostly European populations. Anil Kapoor and his siblings, the Canadian-born children of Indian immigrants, carry a gene form that’s apparently associated with South Asian ancestry.

    Scott Kapoor supports broader testing for the defect — only about half of Toronto’s inhabitants are of European descent — and argues that an antidote to fluoropyrimidine poisoning, approved by the FDA in 2015, should be on hand. However, it works only for a few days after ingestion of the drug and definitive symptoms often take longer to emerge.

    Most importantly, he said, patients must be aware of the risk. “You tell them, ‘I am going to give you a drug with a 1 in 1,000 chance of killing you. You can take this test. Most patients would be, ‘I want to get that test and I’ll pay for it,’ or they’d just say, ‘Cut the dose in half.’”

    Alan Venook, the University of California-San Francisco oncologist who co-chairs the panel that sets guidelines for colorectal cancers at the National Comprehensive Cancer Network, has led resistance to mandatory testing because the answers provided by the test, in his view, are often murky and could lead to undertreatment.

    “If one patient is not cured, then you giveth and you taketh away,” he said. “Maybe you took it away by not giving adequate treatment.”

    Instead of testing and potentially cutting a first dose of curative therapy, “I err on the latter, acknowledging they will get sick,” he said. About 25 years ago, one of his patients died of 5-FU toxicity and “I regret that dearly,” he said. “But unhelpful information may lead us in the wrong direction.”

    In September, seven months after his brother’s death, Kapoor was boarding a cruise ship on the Tyrrhenian Sea near Rome when he happened to meet a woman whose husband, Atlanta municipal judge Gary Markwell, had died the year before after taking a single 5-FU dose at age 77.

    “I was like … that’s exactly what happened to my brother.”

    Murray senses momentum toward mandatory testing. In 2022, the Oregon Health & Science University paid $1 million to settle a suit after an overdose death.

    “What’s going to break that barrier is the lawsuits, and the big institutions like Dana-Farber who are implementing programs and seeing them succeed,” she said. “I think providers are going to feel kind of bullied into a corner. They’re going to continue to hear from families and they are going to have to do something 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.

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