Childhood Vaccination Rates, a Rare Health Bright Spot in Struggling States, Are Slipping

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Jen Fisher can do only so much to keep her son safe from the types of infections that children can encounter at school. The rest, she said, is up to other students and parents in their hometown of Franklin, Tennessee.

Fisher’s son Raleigh, 12, lives with a congenital heart condition, which has left him with a weakened immune system. For his protection, Raleigh has received all the recommended vaccines for a child his age. But even with his vaccinations, a virus that might only sideline another child could sicken him and land him in the emergency room, Fisher said.

“We want everyone to be vaccinated so that illnesses like measles and things that have basically been eradicated don’t come back,” Fisher said. “Those can certainly have a very adverse effect on Raleigh.”

For much of Raleigh’s life, Fisher could take comfort in the high childhood vaccination rate in Tennessee — a public health bright spot in a conservative state with poor health outcomes and one of the shortest life expectancies in the nation.

Mississippi and West Virginia, two similarly conservative states with poor health outcomes and short life expectancies, also have some of the highest vaccination rates for kindergartners in the nation — a seeming contradiction that stems from the fact that childhood vaccination requirements don’t always align with states’ other characteristics, said James Colgrove, a Columbia University professor who studies factors that influence public health.

“The kinds of policies that states have don’t map neatly on to ‘red’ versus ‘blue’ or one region or another,” Colgrove said.

Advocates, doctors, public health officials, and researchers worry such public health bright spots in some states are fading: Many states have recently reported an increase in people opting out of vaccines for their kids as Americans’ views shift.

During the 2023-24 school year, the percentage of kindergartners exempted from one or more vaccinations rose to 3.3%, the highest ever reported, with increases in 40 states and Washington, D.C., according to Centers for Disease Control and Prevention data. Tennessee and Mississippi were among those with increases. Nearly all exemptions nationally were for nonmedical reasons.

Vaccine proponents worry anti-vaccine messaging could accelerate a growing “health freedom” movement that has been pushed by leaders in states such as Florida. Momentum against vaccines is likely to continue to grow with the election of Donald Trump as president and his proposed nomination of anti-vaccine activist Robert F. Kennedy Jr. as secretary of the Department of Health and Human Services.

Pediatricians in states with high exemption rates, such as Florida and Georgia, say they’re concerned by what they see — declining immunization levels for kindergartners, which could lead to a resurgence in vaccine-preventable diseases such as measles. The Florida Department of Health reported nonmedical exemption rates as high as 50% for children in some areas.

“The religious exemption is huge,” said Brandon Chatani, a pediatric infectious disease doctor in Orlando. “That has allowed for an easy way for these kids to enter schools without vaccines.”

In many states, it’s easier to get a religious exemption than a medical one, which often requires signoff from a doctor.

Over the past decade, California, Connecticut, Maine, and New York have removed religious and philosophical exemptions from school vaccination requirements. West Virginia has not had them.

Idaho, Alaska, and Utah had the highest exemption rates for the 2023-24 school year, according to the CDC. Those states allow parents or legal guardians to exempt their children for religious reasons by submitting a notarized form or a signed statement.

Florida and Georgia, with some of the lowest reported minimum vaccination rates for kindergartners, allow parents to exempt their children by submitting a form with the child’s school or day care.

Both states have reported declines in uptake of the measles, mumps, and rubella vaccine, which is one of the most common childhood shots. In Georgia, MMR coverage for kindergartners dropped to 88.4% in the 2023-24 school year from 93.1% in 2019-20, according to the CDC. Florida dropped to 88.1% from 93.5% during the same period.

Andi Shane, a pediatric infectious disease specialist in Atlanta, traces Georgia’s declining rates to families who lack access to a pediatrician. State policies on exemptions are also key, she said.

“There’s lots of data to support the fact that when personal belief exemptions are not permitted, that vaccination rates are higher,” she said.

In December, Georgia public health officials put out an advisory saying the state had recorded significantly more whooping cough cases than in the prior year. According to CDC data, Georgia reported 280 cases in 2024 compared with 96 the year before.

Until 2023, Mississippi was one of the few states that allowed parents to opt out of vaccinating their kids only for medical reasons — and only with the approval of a doctor. That gave it among the highest vaccination rates in the nation as of the 2023-24 school year.

“It’s one of the few things Mississippi has done well,” said Anita Henderson, a pediatrician who has practiced in the southern part of the state for nearly 30 years. In terms of health, she said, childhood vaccination rates were the state’s one “shining star.”

But that changed in April 2023 when a federal judge ordered state officials to start allowing religious exemptions. The ruling has emboldened many families, Henderson said.

“We are seeing more and more skepticism, more and more vaccine hesitancy, and a lack of confidence because of this ruling,” she said.

State officials have granted more than 5,000 religious exemptions since the court order allowing them, according to the state health department. Daniel Edney, the state health officer, said most of the requests have come from “more affluent” residents in “pockets” of the state.

“Most people listen to the expert opinions of their pediatricians and family medicine doctors to stay on the vaccine schedule, because it’s what is best to protect their children,” he said.

West Virginia’s vaccine law — which hasn’t allowed nonmedical exemptions — also could soon change, Matthew Christiansen said in December before he resigned as the state’s health officer.

A bill that would have broadened exemptions made it through the legislature last year but was vetoed by outgoing Republican Gov. Jim Justice. The new governor, Republican Pat Morrisey, has been a vocal critic of vaccine mandates. And just a day after being inaugurated, he issued an executive order to propose provisions by Feb. 1 that could allow religious and conscientious exemptions.

“I want to send a message that if you have a religious belief, then we’re going to have an exception,” he said at a Jan. 14 press conference. “We’re not going to be the outlier.”

People asserting their personal freedoms to decline vaccines for their kids can ultimately curtail the ability of others to live full lives, Christiansen said. “Kids getting measles and mumps and polio and being paralyzed for their whole life is an impediment on personal freedom and autonomy for those kids,” he said.

Since the covid pandemic, anti-vaccine sentiment has been growing in Tennessee. One organization, Stand for Health Freedom, drafted a letter for constituents to send to their state lawmakers calling for the resignation of the medical director of Tennessee’s Vaccine-Preventable Diseases and Immunization Program. The group said she demonstrated a “lack of respect for the informed consent rights” of the people.

“They feel emboldened by the idea that this presidential administration seems to feel very strongly that a lot of these issues should be taken back to the states,” said Emily Delikat, director of Tennessee Families for Vaccines, a pro-vaccine group.

Ultimately, like many effective public health interventions, vaccines are a victim of their own success, said Henderson, the Mississippi pediatrician. Most people haven’t seen outbreaks of measles or polio, so they forget how dangerous the diseases are, she said.

“It may unfortunately take a resurgence of those diseases to raise awareness to the fact that these are dangerous, these are deadly, these are preventable,” she said. “I hope it doesn’t come to that.”

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

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  • Semaglutide for Weight Loss?

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    Semaglutide for weight loss?

    Semaglutide is the new kid on the weight-loss block, but it’s looking promising (with some caveats!).

    Most popularly by brand names Ozempic and Wegovy, it was first trialled to help diabetics*, and is now sought-after by the rest of the population too. So far, only Wegovy is FDA-approved for weight loss. It contains more semaglutide than Ozempic, and was developed specifically for weight loss, rather than for diabetes.

    *Specifically: diabetics with type 2 diabetes. Because it works by helping the pancreas to make insulin, it’s of no help whatsoever to T1D folks, sadly. If you’re T1D and reading this though, today’s book of the day is for you!

    First things first: does it work as marketed for diabetes?

    It does! At a cost: a very common side effect is gastrointestinal problems—same as for tirzepatide, which (like semaglutide) is a GLP-1 agonist, meaning it works the same way. Here’s how they measure up:

    As you can see, both of them work wonders for pancreatic function and insulin sensitivity!

    And, both of them were quite unpleasant for around 20% of participants:

    ❝Tirzepatide, oral and SC semaglutide has a favourable efficacy in treating T2DM. Gastrointestinal adverse events were highly recorded in tirzepatide, oral and SC semaglutide groups.❞

    ~ Zaazouee et al., 2022

    What about for weight loss, if not diabetic?

    It works just the same! With just the same likelihood of gastro-intestinal unpleasantries, though. There’s a very good study that was done with 1,961 overweight adults; here it is:

    Once-Weekly Semaglutide in Adults with Overweight or Obesity

    The most interesting things here are the positive results and the side effects:

    ❝The mean change in body weight from baseline to week 68 was −14.9% in the semaglutide group as compared with −2.4% with placebo, for an estimated treatment difference of −12.4 percentage points (95% confidence interval [CI], −13.4 to −11.5; P<0.001).❞

    ~ Wilding et al., 2021

    In other words: if you take this, you’re almost certainly going to get something like 6x better weight loss results than doing the same thing without it.

    ❝Nausea and diarrhea were the most common adverse events with semaglutide; they were typically transient and mild-to-moderate in severity and subsided with time. More participants in the semaglutide group than in the placebo group discontinued treatment owing to gastrointestinal events (59 [4.5%] vs. 5 [0.8%])❞

    ~ ibid.

    In other words: you have about a 3% chance of having unpleasant enough side effects that you don’t want to continue treatment (contrast this with the 20%ish chance of unpleasant side effects of any extent)!

    Any other downsides we should know about?

    If you stop taking it, weight regain is likely. For example, a participant in one of the above-mentioned studies who lost 22% of her body weight with the drug’s help, says:

    ❝Now that I am no longer taking the drug, unfortunately, my weight is returning to what it used to be. It felt effortless losing weight while on the trial, but now it has gone back to feeling like a constant battle with food. I hope that, if the drug can be approved for people like me, my [doctor] will be able to prescribe the drug for me in the future.❞

    ~ Jan, a trial participant at UCLH

    Source: Gamechanger drug for treating obesity cuts body weight by 20% <- University College London Hospitals (NHS)

    Is it injection-only, or is there an oral option?

    An oral option exists, but (so far) is on the market only in the form of Rybelsus, another (slightly older) drug containing semaglutide, and it’s (so far) only FDA-approved for diabetes, not for weight loss. See:

    A new era for oral peptides: SNAC and the development of oral semaglutide for the treatment of type 2 diabetes ← for the science

    FDA approves first oral GLP-1 treatment for type 2 diabetes ← For the FDA statement

    Where can I get these?

    Availability and prescribing regulations vary by country (because the FDA’s authority stops at the US borders), but here is the website for each of them if you’d like to learn more / consider if they might help you:

    Rybelsus / Ozempic / Wegovy

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  • What you need to know about endometriosis

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    Endometriosis affects one in 10 people with a uterus who are of reproductive age. This condition occurs when tissue similar to the endometrium—the inner lining of the uterus—grows on organs outside of the uterus, causing severe pain that impacts patients’ quality of life.

    Read on to learn more about endometriosis: What it is, how it’s diagnosed and treated, where patients can find support, and more.

    What is endometriosis, and what areas of the body can it affect?

    The endometrium is the tissue that lines the inside of the uterus and sheds during each menstrual cycle. Endometriosis occurs when endometrial-like tissue grows outside of the uterus.

    This tissue can typically grow in the pelvic region and may affect the outside of the uterus, fallopian tubes, ovaries, vagina, bladder, intestines, and rectum. It has also been observed outside of the pelvis on the lungs, spleen, liver, and brain.

    What are the symptoms?

    Symptoms may include pelvic pain and cramping before or during menstrual periods, heavy menstrual bleeding, bleeding or spotting between periods, pain with bowel movements or urination, pain during or after sex or orgasm, fatigue, nausea, bloating, and infertility.

    The pain associated with this condition has been linked to depression, anxiety, and eating disorders. A meta-analysis published in 2019 found that more than two-thirds of patients with endometriosis report psychological stress due to their symptoms.

    Who is at risk?

    Endometriosis most commonly occurs in people with a uterus between the ages of 25 and 40, but it can also affect pre-pubescent and post-menopausal people. In rare cases, it has been documented in cisgender men.

    Scientists still don’t know what causes the endometrial-like tissue to grow, but research shows that people with a family history of endometriosis are at a higher risk of developing the condition. Other risk factors include early menstruation, short menstrual cycles, high estrogen, low body mass, and starting menopause at an older age.

    There is no known way to prevent endometriosis.

    How does endometriosis affect fertility?

    Up to 50 percent of people with endometriosis may struggle to get pregnant. Adhesions and scarring on the fallopian tubes and ovaries as well as changes in hormones and egg quality can contribute to infertility.

    Additionally, when patients with this condition are able to conceive, they may face an increased risk of pregnancy complications and adverse pregnancy outcomes.

    Treating endometriosis, taking fertility medications, and using assistive reproductive technology like in vitro fertilization can improve fertility outcomes.

    How is endometriosis diagnosed, and what challenges do patients face when seeking a diagnosis?

    A doctor may perform a pelvic exam and request an ultrasound or MRI. These exams and tests help identify cysts or other unusual tissue that may indicate endometriosis.

    Endometriosis can only be confirmed through a surgical laparoscopy (although less-invasive diagnostic tests are currently in development). During the procedure, a surgeon makes a small cut in the patient’s abdomen and inserts a thin scope to check for endometrial-like tissue outside of the uterus. The surgeon may take a biopsy, or a small sample, and send it to a lab.

    It takes an average of 10 years for patients to be properly diagnosed with endometriosis. A 2023 U.K. study found that stigma around menstrual health, the normalization of menstrual pain, and a lack of medical training about the condition contribute to delayed diagnoses. Patients also report that health care providers dismiss their pain and attribute their symptoms to psychological factors.

    Additionally, endometriosis has typically been studied among white, cisgender populations. Data on the prevalence of endometriosis among people of color and transgender people is limited, so patients in those communities face additional barriers to care.

    What treatment options are available?

    Treatment for endometriosis depends on its severity. Management options include:

    • Over-the-counter pain medication to alleviate pelvic pain
    • Hormonal birth control to facilitate lighter, less painful periods
    • Hormonal medications such as gonadotropin-releasing hormone (GnRH) or danazol, which stop the production of hormones that cause menstruation
    • Progestin therapy, which may stop the growth of endometriosis tissue
    • Aromatase inhibitors, which reduce estrogen

    In some cases, a doctor may perform a laparoscopic surgery to remove endometrial-like tissue.

    Depending on the severity of the patient’s symptoms and scar tissue, some doctors may also recommend a hysterectomy, or the removal of the uterus, to alleviate symptoms. Doctors may also recommend removing the patient’s ovaries, inducing early menopause to potentially improve pain.

    Where can people living with endometriosis find support?

    Given the documented mental health impacts of endometriosis, patients with this condition may benefit from therapy, as well as support from others living with the same symptoms. Some peer support organizations include:

    For more information, talk to your health care provider.

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

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  • Eating on the Wild Side: – by Jo Robinson

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    The author is an investigative journalist, and it shows here, as she leaves no stone unturned in her quest for the truth in the face of many food myths.

    She covers a lot of “popular wisdom” things that are varyingly true or false, or sometimes even both—in the case of food lore that’s a good rule of thumb, but has notable exceptions (e.g. “more colorful and/or darker-colored fruits/vegetables contain more nutrients”, which is a very good rule of thumb until one meets a cauliflower, for example).

    She also covers food preparation myths, and how, to give one example, in spite of the popularity of “less cooked is better”, in some cases certain cooking methods will indeed destroy nutrients; in others, certain cooking methods will improve nutritional availability. Either by destroying an adjacent antinutrient (e.g. phytates), or by breaking something down into a more manageable form that our body can absorb. Knowing which is which, is important.

    The book is organized by kinds of food, and does exclusively cover plants, but there’s more than enough material for any omnivore to enjoy.

    The style is… Journalistic, it would be fair to say. Which is not surprising, given the author. But it means that it is written in a fairly narrative way, to draw the reader in and make it an enjoyable read while still being informative in all parts (there is no padding). In terms of science, the in-the-prose science is as minimal as possible to still convey what needs to be conveyed, while 25 pages of bibliography stack up at the end to show that indeed, this journalist cites sources.

    Bottom line: this is a really enjoyable book, packed with a wealth of knowledge, and is perfect to uplift your cooking by knowing your ingredients a little more intimately!

    Click here to check out Eating On The Wild Side, and, enjoy!

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  • Ear Today, Gone Tomorrow

    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.

    It’s Q&A Day at 10almonds!

    Have a question or a request? You can always hit “reply” to any of our emails, or use the feedback widget at the bottom!

    In cases where we’ve already covered something, we might link to what we wrote before, but will always be happy to revisit any of our topics again in the future too—there’s always more to say!

    As ever: if the question/request can be answered briefly, we’ll do it here in our Q&A Thursday edition. If not, we’ll make a main feature of it shortly afterwards!

    So, no question/request too big or small

    ❝Have just had microsuction to remove wax from my ears. A not unpleasant experience but would appreciate your guidance on how best to discourage the buildup of wax in the first place.❞

    Well, certainly do not prod or poke it, and that includes with cotton buds (Q-Tips, for the Americans amongst us). That pushes more down than that it extracts, and creates a denser base of wax.

    There is no evidence that ear candles help, and they can cause harm.

    Further reading: Experts update best practices for diagnosis and treatment of earwax (cerumen impaction)

    Ear drops can help, and if you want a home-remedy edition, olive oil or almond oil can be used; these oils dissolve the wax quite quickly (in fancier words: they are cerumenolytic agents); washing with water (e.g. in the shower or bath) is then all that’s needed. However, to avoid infection, ensure you are using a high-purity oil, and get one to use just for that; don’t just grab a bottle from the kitchen.

    For your convenience, here is an example of medical grade almond oil (with dropper!) on Amazon

    ❝Every article had relevance to me. I ❤️ whole fruit, it’s my go to treat. I use ice packs to ease my arthritic knee pain, works well. I’ve read and loved Dr Gawande’s books. Great handful of almonds today❞

    While this wasn’t a question, and we don’t usually publish feedback here, I (your writer here, hi) misread that as “ice picks” in the first instance, an implement we’ve probably all wanted to use to relieve pain at some point, but certainly not recommendable! Anyway, the momentary confusion made me smile, so I thought I’d share the silly thought. Smiling is infectious, and all that… And it’s certainly good for the health!

    More seriously, glad you enjoyed!

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  • What you need to know about menopause

    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.

    Menopause describes the time when a person with ovaries has gone one full year without a menstrual period. Reaching this phase is a natural aging process that marks the end of reproductive years.

    Read on to learn more about the causes, stages, signs, and management of menopause.

    What causes menopause?

    As you age, your ovaries begin making less estrogen and progesterone—two of the hormones involved in menstruation—and your fertility declines, causing menopause.

    Most people begin perimenopause, the transitional time that ends in menopause, in their late 40s, but it can start earlier. On average, people in the U.S. experience menopause in their early 50s.

    Your body may reach early menopause for a variety of reasons, including having an oophorectomy, a surgery that removes the ovaries. In this case, the hormonal changes happen abruptly rather than gradually.

    Chemotherapy and radiation therapy for cancer patients may also induce menopause, as these treatments may impact ovary function.

    What are the stages of menopause?

    There are three stages:

    • Perimenopause typically occurs eight to 10 years before menopause happens. During this stage, estrogen production begins to decline and ovaries release eggs less frequently.
    • Menopause marks the point when you have gone 12 consecutive months without a menstrual period. This means the ovaries have stopped releasing eggs and producing estrogen.
    • Postmenopause describes the time after menopause. Once your body reaches this phase, it remains there for the rest of your life.

    How do the stages of menopause affect fertility?

    Your ovaries still produce eggs during perimenopause, so it is still possible to get pregnant during that stage. If you do not wish to become pregnant, continue using your preferred form of birth control throughout perimenopause.

    Once you’ve reached menopause, you can no longer get pregnant naturally. People who would like to become pregnant after that may pursue in vitro fertilization (IVF) using eggs that were frozen earlier in life or donor eggs.

    What are the signs of menopause?

    Hormonal shifts result in a number of bodily changes. Signs you are approaching menopause may include:

    • Hot flashes (a sudden feeling of warmth).
    • Irregular menstrual periods, or unusually heavy or light menstrual periods.
    • Night sweats and/or cold flashes.
    • Insomnia.
    • Slowed metabolism.
    • Irritability, mood swings, and depression.
    • Vaginal dryness.
    • Changes in libido.
    • Dry skin, eyes, and/or mouth.
    • Worsening of premenstrual syndrome (PMS).
    • Urinary urgency (a sudden need to urinate).
    • Brain fog.

    How can I manage the effects of menopause?

    You may not need any treatment to manage the effects of menopause. However, if the effects are disrupting your life, your doctor may prescribe hormone therapy.

    If you have had a hysterectomy, your doctor may prescribe estrogen therapy (ET), which may be administered via a pill, patch, cream, spray, or vaginal ring. If you still have a uterus, your doctor may prescribe estrogen progesterone/progestin hormone therapy (EPT), which is sometimes called “combination therapy.”

    Both of these therapies work by replacing the hormones your body has stopped making, which can reduce the physical and mental effects of menopause.

    Other treatment options may include antidepressants, which can help manage mood swings and hot flashes; prescription creams to alleviate vaginal dryness; or gabapentin, an anti-seizure medication that has been shown to reduce hot flashes.

    Lifestyle changes may help alleviate the effects on their own or in combination with prescription medication. Those changes include:

    • Incorporating movement into your daily life.
    • Limiting caffeine and alcohol.
    • Quitting smoking.
    • Maintaining a regular sleep schedule.
    • Practicing relaxation techniques, such as meditation.
    • Consuming foods rich in plant estrogens, such as grains, beans, fruits, vegetables, and seeds.
    • Seeking support from a therapist and from loved ones.

    What health risks are associated with menopause?

    Having lower levels of estrogen may put you at greater risk of certain health complications, including osteoporosis and coronary artery disease.

    Osteoporosis occurs when bones lose their density, increasing the risk of fractures. A 2022 study found that the prevalence of osteoporotic fractures in postmenopausal women was 82.2 percent.

    Coronary artery disease occurs when the arteries that send blood to your heart become narrow or blocked with fatty plaque.

    Estrogen therapy can reduce your risk of osteoporosis and coronary artery disease by preserving bone mass and maintaining cardiovascular function.

    For more information, talk to your health care provider.

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

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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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