Toxic Gas That Sterilizes Medical Devices Prompts Safety Rule Update
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Over the past two years, Madeline Beal has heard frustration and even bewilderment during public meetings about ethylene oxide, a cancer-causing gas that is used to sterilize half of the medical devices in the U.S.
Beal, senior risk communication adviser for the Environmental Protection Agency, has fielded questions about why the agency took so long to alert people who live near facilities that emit the chemical about unusually high amounts of the carcinogenic gas in their neighborhoods. Residents asked why the EPA couldn’t close those facilities, and they wanted to know how many people had developed cancer from their exposure.
“If you’re upset by the information you’re hearing tonight, if you’re angry, if it scares you to think about risk to your family, those are totally reasonable responses,” Beal told an audience in Laredo, Texas, in September 2022. “We think the risk levels near this facility are too high.”
There are about 90 sterilizing plants in the U.S. that use ethylene oxide, and for decades companies used the chemical to sterilize medical products without drawing much attention. Many medical device-makers send their products to the plants to be sterilized before they are shipped, typically to medical distribution companies.
But people living around these facilities have been jolted in recent years by a succession of warnings about cancer risk from the federal government and media reports, an awareness that has also spawned protests and lawsuits alleging medical harm.
The EPA is expected to meet a March 1 court-ordered deadline to finalize tighter safety rules around how the toxic gas is used. The proposed changes come in the wake of a 2016 agency report that found that long-term exposure to ethylene oxide is more dangerous than was previously thought.
But the anticipated final rules — the agency’s first regulatory update on ethylene oxide emissions in more than a decade — are expected to face pushback. Medical device-makers worry stricter regulation will increase costs and may put patients at higher risk of infection from devices, ranging from surgical kits to catheters, due to deficient sterilization. The new rules are also not likely to satisfy the concerns of environmentalists or members of the public, who already have expressed frustration about how long it took the federal government to sound the alarm.
“We have been breathing this air for 40 years,” said Connie Waller, 70, who lives with her husband, David, 75, within two miles of such a sterilizing plant in Covington, Georgia, east of Atlanta. “The only way to stop these chemicals is to hit them in their pocketbook, to get their attention.”
The EPA says data shows that long-term exposure to ethylene oxide can increase the risk of breast cancer and cancers of the white blood cells, such as non-Hodgkin lymphoma, myeloma, and lymphocytic leukemia. It can irritate the eyes, nose, throat, and lungs, and has been linked to damage to the brain and nervous and reproductive systems. Children are potentially more vulnerable, as are workers routinely exposed to the chemical, EPA officials say. The agency calculates the risk based on how much of the gas is in the air or near the sterilizing facility, the distance a person is from the plant, and how long the person is exposed.
Waller said she was diagnosed with breast cancer in 2004 and that her husband was found to have non-Hodgkin lymphoma eight years later.
A 2022 study of communities living near a sterilization facility in Laredo found the rates of acute lymphocytic leukemia and breast cancer were greater than expected based on statewide rates, a difference that was statistically significant.
Beal, the EPA risk adviser, who regularly meets with community members, acknowledges the public’s concerns. “We don’t think it’s OK for you to be at increased risk from something that you have no control over, that’s near your house,” she said. “We are working as fast as we can to get that risk reduced with the powers that we have available to us.”
In the meantime, local and state governments and industry groups have scrambled to defuse public outcry.
Hundreds of personal injury cases have been filed in communities near sterilizing plants. In 2020, New Mexico’s then-attorney general filed a lawsuit against a plant in Santa Teresa, and that case is ongoing. In a case that settled last year in suburban Atlanta, a company agreed to pay $35 million to 79 people who alleged ethylene oxide used at the plant caused cancer and other injuries.
In Cook County, Illinois, a jury in 2022 awarded $363 million to a woman who alleged exposure to ethylene oxide gas led to her breast cancer diagnosis. But, in another Illinois case, a jury ruled that the sterilizing company was not liable for a woman’s blood cancer claim.
Greg Crist, chief advocacy officer for the Advanced Medical Technology Association, a medical device trade group that says ethylene oxide is an effective and reliable sterilant, attributes the spate of lawsuits to the litigious nature of trial attorneys.
“If they smell blood in the water, they’ll go after it,” Crist said.
Most states have at least one sterilizing plant. According to the EPA, a handful, like California and North Carolina, have gone further than the agency and the federal Clean Air Act to regulate ethylene oxide emissions. After a media and political firestorm raised awareness about the metro Atlanta facilities, Georgia started requiring sterilizing plants that use the gas to report all leaks.
The proposed rules the EPA is set to finalize would set lower emissions limits for chemical plants and commercial sterilizers and increase some safety requirements for workers within these facilities. The agency is expected to set an 18-month deadline for commercial sterilizers to come into compliance with the emissions rules.
That would help at facilities that “cut corners,” with lax pollution controls that allow emissions of the gas into nearby communities, said Richard Peltier, a professor of environmental health sciences at the University of Massachusetts-Amherst. Stronger regulation also prevents the plants from remaining under the radar. “One of the dirty secrets is that a lot of it is self-regulated or self-policed,” Peltier added.
But the proposed rules did not include protections for workers at off-site warehouses that store sterilized products, which can continue to emit ethylene oxide. They also did not require air testing around the facilities, prompting debate about how effective they would be in protecting the health of nearby residents.
Industry officials also don’t expect an alternative that is as broadly effective as ethylene oxide to be developed anytime soon, though they support researching other methods. Current alternatives include steam, radiation, and hydrogen peroxide vapor.
Increasing the use of alternatives can reduce industry dependence on “the crutch of ethylene oxide,” said Darya Minovi, senior analyst with the Union of Concerned Scientists, an advocacy group.
But meeting the new guidelines will be disruptive to the industry, Crist said. He estimates companies will spend upward of $500 million to comply with the new EPA rules and could struggle to meet the agency’s 18-month timetable. Sterilization companies will also have difficulty adjusting to new rules on how workers handle the gas without a dip in efficiency, Crist said.
The Food and Drug Administration, which regulates drugs and medical devices, is also watching the regulatory moves closely and worries the updated emissions rule could “present some unique challenges” if implemented as proposed, said Audra Harrison, an FDA spokesperson. “The FDA is concerned about the rule’s effects on the availability of medical devices,” she added.
Other groups, like the American Chemistry Council and the Texas Commission on Environmental Quality, the state’s environmental agency, assert that ethylene oxide use isn’t as dangerous as the EPA says. The EPA’s toxicity assessment has “severe flaws” and is “overly conservative,” the council said in an emailed statement. Texas, which has several sterilizing plants, has said ethylene oxide isn’t as high a cancer risk as the agency claims, an assessment that the EPA has rejected.
Tracey Woodruff, a researcher at the University of California-San Francisco who previously worked at the EPA, said it can be hard for the agency to keep up with regulating chemicals like ethylene oxide because of constrained resources, the technical complications of rulemaking, and industry lobbying.
But she’s hopeful the EPA can strike a balance between its desire to reduce exposure and the desire of the FDA not to disrupt medical device sterilization. And scrutiny can also help the device sterilization industry think outside the box.
“We continue to discover these chemicals that we’ve already been exposed to were toxic, and we have high exposures,” she said. “Regulation is an innovation forcer.”
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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5 Ways to Beat Menopausal Weight Gain!
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As it turns out, “common” does not mean “inevitable”!
Health Coach Kait’s advice
Her 5 tips are…
- Understand your metabolism: otherwise you’re working the dark and will get random results. Learn about how different foods affect your metabolism, and note that hormonal changes due to menopause can mean that some food types have different effects now.
- Eat enough protein: one thing doesn’t change—protein helps with satiety, thus helping to avoid overeating.
- Focus on sleep: prioritizing sleep is essential for hormone regulation, and that means not just sex hormones, but also food-related hormones such as insulin, ghrelin, and leptin.
- Be smart about carbs: taking a lot of carbs at once can lead to insulin spikes and thus metabolic disorder, which in turn leads to fat in places you don’t want it (especially your liver and belly). Enjoying a low-carb diet, and/or pairing your carbs with proteins and fats, does a lot to help avoid insulin spikes too. Not mentioned in the video, but we’re going to mention here: don’t underestimate fiber’s role either, especially if you take it before the carbs, which is best for blood sugars, as it gives a buffer to the digestive process, thus slowing down absorption of carbs.
- Build muscle: if trying to avoid/lose fat, it’s tempting to focus on cardio, but we generally can’t exercise our way out of having fat, whereas having more muscle increases the body’s metabolic base rate, burning fat just by existing. So for this reason, enjoy muscle-building resistance exercises at least a few times per week.
For more information on each of these, enjoy:
Click Here If The Embedded Video Doesn’t Load Automatically!
Want to learn more?
You might also like to read:
Visceral Belly Fat & How To Lose It
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What Flexible Dieting Really Means
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When Flexibility Is The Dish Of The Day
This is Alan Aragon. Notwithstanding not being a “Dr. Alan Aragon”, he’s a research scientist with dozens of peer-reviewed nutrition science papers to his name, as well as being a personal trainer and fitness educator. Most importantly, he’s an ardent champion of making people’s pursuit of health and fitness more evidence-based.
We’ll be sharing some insights from a book of his that we haven’t reviewed yet, but we will link it at the bottom of today’s article in any case.
What does he want us to know?
First, get out of the 80s and into the 90s
In the world of popular dieting, the 80s were all about calorie-counting and low-fat diets. They did not particularly help.
In the 90s, it was discovered that not only was low-fat not the way to go, but also, regardless of the diet in question, rigid dieting leads to “disinhibition”, that is to say, there comes a point (usually not far into a diet) whereby one breaks the diet, at which point, the floodgates open and the dieter binges unhealthily.
Aragon would like to bring our attention to a number of studies that found this in various ways over the course of the 90s measuring various different metrics including rigid vs flexible dieting’s impacts on BMI, weight gain, weight loss, lean muscle mass changes, binge-eating, anxiety, depression, and so forth), but we only have so much room here, so here’s a 1999 study that’s pretty much the culmination of those:
Flexible vs. Rigid Dieting Strategies: Relationship with Adverse Behavioral Outcomes
So in short: trying to be very puritan about any aspect of dieting will not only not work, it will backfire.
Next, get out of the 90s into the 00s
…which is not only fun if you read “00s” out loud as “naughties”, but also actually appropriate in this case, because it is indeed important to be comfortable being a little bit naughty:
In 2000, Dr. Marika Tiggemann found that dichotomous perceptions of food (e.g. good/bad, clean/dirty, etc) were implicated as a dysfunctional cognitive style, and predicted not only eating disorders and mood disorders, but also adverse physical health outcomes:
Dieting and Cognitive Style: The Role of Current and Past Dieting Behaviour and Cognitions
This was rendered clearer, in terms of physical health outcomes, by Dr. Susan Byrne & Dr. Emma Dove, in 2009:
❝Weight loss was negatively associated with pre-treatment depression and frequency of treatment attendance, but not with dichotomous thinking. Females who regard their weight as unacceptably high and who think dichotomously may experience high levels of depression irrespective of their actual weight, while depression may be proportionate to the degree of obesity among those who do not think dichotomously❞
Aragon’s advice based on all this: while yes, some foods are better than others, it’s more useful to see foods as being part of a spectrum, rather than being absolutist or “black and white” about it.
Next: hit those perfect 10s… Imperfectly
The next decade expanded on this research, as science is wont to do, and for this one, Aragon shines a spotlight on Dr. Alice Berg’s 2018 study with obese women averaging 69 years of age, in which…
In other words (and in fact, to borrow Dr. Berg’s words from that paper),
❝encouraging a flexible approach to eating behavior and discouraging rigid adherence to a diet may lead to better intentional weight loss for overweight and obese older women❞
You may be wondering: what did this add to the studies from the 90s?
And the key here is: rather than being observational, this was interventional. In other words, rather than simply observing what happened to people who thought one way or another, this study took people who had a rigid, dichotomous approach to food, and gave them a 6-month behavioral intervention (in other words, support encouraging them to be more flexible and open in their approach to food), and found that this indeed improved matters for them.
Which means, it’s not a matter of fate or predisposition, as it could have been back in the 90s, per “some people are just like that; who’s to say which factor causes which”. Instead, now we know that this is an approach that can be adopted, and it can be expected to work.
Beyond weight loss
Now, so far we’ve talked mostly about weight loss, and only touched on other health outcomes. This is because:
- weight loss a very common goal for many
- it’s easy to measure so there’s a lot of science for it
Incidentally, if it’s a goal of yours, here’s what 10almonds had to say about that, along with two follow-up articles for other related goals:
Spoiler: we agree with Aragon, and recommend a relaxed and flexible approach to all three of these things
Aragon’s evidence-based approach to nutrition has found that this holds true for other aspects of healthy eating, too. For example…
To count or not to count?
It’s hard to do evidence-based anything without counting, and so Aragon talks a lot about this. Indeed, he does a lot of counting in scientific papers of his own, such as:
and
The effect of protein timing on muscle strength and hypertrophy: a meta-analysis
…as well as non-protein-related but diet-related topics such as:
But! For the at-home health enthusiast, Aragon recommends that the answer to the question “to count or not to count?” is “both”:
- Start off by indeed counting and tracking everything that is important to you (per whatever your current personal health intervention is, so it might be about calories, or grams of protein, or grams of carbs, or a certain fat balance, or something else entirely)
- Switch to a more relaxed counting approach once you get used to the above. By now you probably know the macros for a lot of your common meals, snacks, etc, and can tally them in your head without worrying about weighing portions and knowing the exact figures.
- Alternatively, count moderately standardized portions of relevant foods, such as “three servings of beans or legumes per day” or “no more than one portion of refined carbohydrates per day”
- Eventually, let habit take the wheel. Assuming you have established good dietary habits, this will now do you just fine.
This latter is the point whereby the advice (that Aragon also champions) of “allow yourself an unhealthy indulgence of 10–20% of your daily food”, as a budget of “discretionary calories”, eventually becomes redundant—because chances are, you’re no longer craving that donut, and at a certain point, eating foods far outside the range of healthiness you usually eat is not even something that you would feel inclined to do if offered.
But until that kicks in, allow yourself that budget of whatever unhealthy thing you enjoy, and (this next part is important…) do enjoy it.
Because it is no good whatsoever eating that cream-filled chocolate croissant and then feeling guilty about it; that’s the dichotomous thinking we had back in the 80s. Decide in advance you’re going to eat and enjoy it, then eat and enjoy it, then look back on it with a sense of “that was enjoyable” and move on.
The flipside of this is that the importance of allowing oneself a “little treat” is that doing so actively helps ensure that the “little treat” remains “little”. Without giving oneself permission, then suddenly, “well, since I broke my diet, I might as well throw the whole thing out the window and try again on Monday”.
On enjoying food fully, by the way:
Mindful Eating: How To Get More Nutrition Out Of The Same Food
Want to know more from Alan Aragon?
Today we’ve been working heavily from this book of his; we haven’t reviewed it yet, but we do recommend checking it out:
Enjoy!
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Beetroot vs Eggplant – Which is Healthier?
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Our Verdict
When comparing beetroot to eggplant, we picked the beetroot.
Why?
It’s close!
In terms of macros, they’re equal on fiber, while beetroot has slightly more protein and carbs. In both cases, despite being quite firm vegetables when raw, they are nevertheless both mostly water. We’re calling this category a tie.
In the category of vitamins, beetroot has more of vitamins A, B2, B9, and C, while eggplant has more of vitamins B3, B5, B6, E, and K. That’s a marginal victory for eggplant.
When it comes to minerals, however, beetroot has more calcium, copper, iron, magnesium, manganese, phosphorus, potassium, selenium, and zinc, while eggplant is not higher in any minerals. A clear and easy win for beetroot this time.
In terms of polyphenols, both have good-but-different health-giving polyphenols to share, including the quercetin in beetroot and caffeic acid in eggplant—nothing that would tip one ahead of the other, though.
All in all, the categories added up are balanced, but beetroot won the minerals category much more convincingly than eggplant won the vitamins category, so we’re giving this one to beetroot, even if only on tie-breakers!
Of course, enjoy either or both; diversity is good 😎
Want to learn more?
You might like to read:
Beetroot For More Than Just Your Blood Pressure ← more beetroot benefits
Take care!
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A drug that can extend your life by 25%? Don’t hold your breath
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Every few weeks or months, the media reports on a new study that tantalisingly dangles the possibility of a new drug to give us longer, healthier lives.
The latest study centres around a drug involved in targeting interleukin-11, a protein involved in inflammation. Blocking this protein appeared to help mice stave off disease and extend their life by more than 20%.
If only defying the ravages of time could be achieved through such a simple and effort-free way – by taking a pill. But as is so often the case, the real-world significance of these findings falls a fair way short of the hype.
Halfpoint/Shutterstock The role of inflammation in disease and ageing
Chronic inflammation in the body plays a role in causing disease and accelerating ageing. In fact, a relatively new label has been coined to represent this: “inflammaging”.
While acute inflammation is an important response to infection or injury, if inflammation persists in the body, it can be very damaging.
A number of lifestyle, environmental and societal drivers contribute to chronic inflammation in the modern world. These are largely the factors we already know are associated with disease and ageing, including poor diet, lack of exercise, obesity, stress, lack of sleep, lack of social connection and pollution.
While addressing these issues directly is one of the keys to addressing chronic inflammation, disease and ageing, there are a number of research groups also exploring how to treat chronic inflammation with pharmaceuticals. Their goal is to target and modify the molecular and chemical pathways involved in the inflammatory process itself.
What the latest research shows
This new interleukin-11 research was conducted in mice and involved a number of separate components.
In one component of this research, interleukin-11 was genetically knocked out in mice. This means the gene for this chemical mediator was removed from these mice, resulting in the mice no longer being able to produce this mediator at all.
In this part of the study, the mice’s lives were extended by over 20%, on average.
Another component of this research involved treating older mice with a drug that blocks interleukin-11.
Injecting this drug into 75-week old mice (equivalent to 55-year-old humans) was found to extend the life of mice by 22-25%.
These treated mice were less likely to get cancer and had lower cholesterol levels, lower body weight and improved muscle strength and metabolism.
From these combined results, the authors concluded, quite reasonably, that blocking interleukin-11 may potentially be a key to mitigating age-related health effects and improving lifespan in both mice and humans.
Why you shouldn’t be getting excited just yet
There are several reasons to be cautious of these findings.
First and most importantly, this was a study in mice. It may be stating the obvious, but mice are very different to humans. As such, this finding in a mouse model is a long way down the evidence hierarchy in terms of its weight.
Research shows only about 5% of promising findings in animals carry over to humans. Put another way, approximately 95% of promising findings in animals may not be translated to specific therapies for humans.
Second, this is only one study. Ideally, we would be looking to have these findings confirmed by other researchers before even considering moving on to the next stage in the knowledge discovery process and examining whether these findings may be true for humans.
We generally require a larger body of evidence before we get too excited about any new research findings and even consider the possibility of human trials.
Third, even if everything remains positive and follow-up studies support the findings of this current study, it can take decades for a new finding like this to be translated to successful therapies in humans.
Until then, we can focus on doing the things we already know make a huge difference to health and longevity: eating well, exercising, maintaining a healthy weight, reducing stress and nurturing social relationships.
Hassan Vally, Associate Professor, Epidemiology, Deakin University
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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Why do I need to get up during the night to wee? Is this normal?
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It can be normal to wake up once or even twice during the night to wee, especially as we get older.
One in three adults over 30 makes at least two trips to the bathroom every night.
Waking up from sleep to urinate on a regular basis is called nocturia. It’s one of the most commonly reported bothersome urinary symptoms (others include urgency and poor stream).
So what causes nocturia, and how can it affect wellbeing?
A range of causes
Nocturia can be caused by a variety of medical conditions, such as heart or kidney problems, poorly controlled diabetes, bladder infections, an overactive bladder, or gastrointestinal issues. Other causes include pregnancy, medications and consumption of alcohol or caffeine before bed.
While nocturia causes disrupted sleep, the reverse is true as well. Having broken sleep, or insomnia, can also cause nocturia.
When we sleep, an antidiuretic hormone is released that slows down the rate at which our kidneys produce urine. If we lie awake at night, less of this hormone is released, meaning we continue to produce normal rates of urine. This can accelerate the rate at which we fill our bladder and need to get up during the night.
Stress, anxiety and watching television late into the night are common causes of insomnia.
Sometimes we need to get up late at night to pee.
Christian MoroEffects of nocturia on daily functioning
The recommended amount of sleep for adults is between seven and nine hours per night. The more times you have to get up in the night to go to the bathroom, the more this impacts sleep quantity and quality.
Decreased sleep can result in increased tiredness during the day, poor concentration, forgetfulness, changes in mood and impaired work performance.
If you’re missing out on quality sleep due to nighttime trips to the bathroom, this can affect your quality of life.
In more severe cases, nocturia has been compared to having a similar impact on quality of life as diabetes, high blood pressure, chest pain, and some forms of arthritis. Also, frequent disruptions to quality and quantity of sleep can have longer-term health impacts.
Nocturia not only upsets sleep, but also increases the risk of falls from moving around in the dark to go to the bathroom.
Further, it can affect sleep partners or others in the household who may be disturbed when you get out of bed.
Can you have a ‘small bladder’?
It’s a common misconception that your trips to the bathroom are correlated with the size of your bladder. It’s also unlikely your bladder is smaller relative to your other organs.
If you find you are having to wee more than your friends, this could be due to body size. A smaller person drinking the same amount of fluids as someone larger will simply need to go the bathroom more often.
If you find you are going to the bathroom quite a lot during the day and evening (more than eight times in 24 hours), this could be a symptom of an overactive bladder. This often presents as frequent and sudden urges to urinate.
If you are concerned about any lower urinary tract symptoms, it’s worth having a chat with your family GP.
There are some medications that can assist in the management of nocturia, and your doctor will also be able to help identify any underlying causes of needing to go to the toilet during the night.
A happy and healthy bladder
Here are some tips to maintain a happy and healthy bladder, and reduce the risk you’ll be up at night:
- make your sleep environment comfortable, with a suitable mattress and sheets to suit the temperature
- get to bed early, and limit screens, or activites before bed
- limit foods and drinks that irritate the bladder, such as coffee or alcohol, especially before bedtime
- sit in a relaxed position when urinating, and allow time for the bladder to completely empty
- practice pelvic floor muscle exercises
- drink an adequate amount of fluids during the day, and avoid becoming dehydrated
- maintain a healthy lifestyle, eat nutritious foods and do not do anything harmful to the body such as smoking or using illicit drugs
- review your medications, as the time you take some pharmaceuticals may affect urine production or sleep
- if you have swollen legs, raise them a few hours before bedtime to let the fluid drain.
Christian Moro, Associate Professor of Science & Medicine, Bond University and Charlotte Phelps, Senior Teaching Fellow, Medical Program, Bond University
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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What is childhood dementia? And how could new research help?
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“Childhood” and “dementia” are two words we wish we didn’t have to use together. But sadly, around 1,400 Australian children and young people live with currently untreatable childhood dementia.
Broadly speaking, childhood dementia is caused by any one of more than 100 rare genetic disorders. Although the causes differ from dementia acquired later in life, the progressive nature of the illness is the same.
Half of infants and children diagnosed with childhood dementia will not reach their tenth birthday, and most will die before turning 18.
Yet this devastating condition has lacked awareness, and importantly, the research attention needed to work towards treatments and a cure.
More about the causes
Most types of childhood dementia are caused by mutations (or mistakes) in our DNA. These mistakes lead to a range of rare genetic disorders, which in turn cause childhood dementia.
Two-thirds of childhood dementia disorders are caused by “inborn errors of metabolism”. This means the metabolic pathways involved in the breakdown of carbohydrates, lipids, fatty acids and proteins in the body fail.
As a result, nerve pathways fail to function, neurons (nerve cells that send messages around the body) die, and progressive cognitive decline occurs.
Childhood dementia is linked to rare genetic disorders. maxim ibragimov/Shutterstock What happens to children with childhood dementia?
Most children initially appear unaffected. But after a period of apparently normal development, children with childhood dementia progressively lose all previously acquired skills and abilities, such as talking, walking, learning, remembering and reasoning.
Childhood dementia also leads to significant changes in behaviour, such as aggression and hyperactivity. Severe sleep disturbance is common and vision and hearing can also be affected. Many children have seizures.
The age when symptoms start can vary, depending partly on the particular genetic disorder causing the dementia, but the average is around two years old. The symptoms are caused by significant, progressive brain damage.
Are there any treatments available?
Childhood dementia treatments currently under evaluation or approved are for a very limited number of disorders, and are only available in some parts of the world. These include gene replacement, gene-modified cell therapy and protein or enzyme replacement therapy. Enzyme replacement therapy is available in Australia for one form of childhood dementia. These therapies attempt to “fix” the problems causing the disease, and have shown promising results.
Other experimental therapies include ones that target faulty protein production or reduce inflammation in the brain.
Research attention is lacking
Death rates for Australian children with cancer nearly halved between 1997 and 2017 thanks to research that has enabled the development of multiple treatments. But over recent decades, nothing has changed for children with dementia.
In 2017–2023, research for childhood cancer received over four times more funding per patient compared to funding for childhood dementia. This is despite childhood dementia causing a similar number of deaths each year as childhood cancer.
The success for childhood cancer sufferers in recent decades demonstrates how adequately funding medical research can lead to improvements in patient outcomes.
Dementia is not just a disease of older people. Miljan Zivkovic/Shutterstock Another bottleneck for childhood dementia patients in Australia is the lack of access to clinical trials. An analysis published in March this year showed that in December 2023, only two clinical trials were recruiting patients with childhood dementia in Australia.
Worldwide however, 54 trials were recruiting, meaning Australian patients and their families are left watching patients in other parts of the world receive potentially lifesaving treatments, with no recourse themselves.
That said, we’ve seen a slowing in the establishment of clinical trials for childhood dementia across the world in recent years.
In addition, we know from consultation with families that current care and support systems are not meeting the needs of children with dementia and their families.
New research
Recently, we were awarded new funding for our research on childhood dementia. This will help us continue and expand studies that seek to develop lifesaving treatments.
More broadly, we need to see increased funding in Australia and around the world for research to develop and translate treatments for the broad spectrum of childhood dementia conditions.
Dr Kristina Elvidge, head of research at the Childhood Dementia Initiative, and Megan Maack, director and CEO, contributed to this article.
Kim Hemsley, Head, Childhood Dementia Research Group, Flinders Health and Medical Research Institute, College of Medicine and Public Health, Flinders University; Nicholas Smith, Head, Paediatric Neurodegenerative Diseases Research Group, University of Adelaide, and Siti Mubarokah, Research Associate, Childhood Dementia Research Group, Flinders Health and Medical Research Institute, College of Medicine and Public Health, Flinders University
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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