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the underestimated impact of mild-to-moderate eczema
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this article was produced by the healthing editorial team with the support of a grant fromarcutis canada. whilearcutis canadamade the production of this article possible, they did not have any editorial influence or control over the content, including review prior to publication.
about 20 per cent of canadian children currently live with atopic dermatitis (ad), also known as eczema. symptoms, including severe itchiness, dry skin and inflamed rashes, can make life more challenging for children and their caregivers. there are different levels of the disease, ranging from mild to severe, with the mild-to-moderate designation sitting right there in the middle.
for those living with mild-to-moderate, access to adequate medications often comes with its own challenges, especially when certain medications don’t provide relief, but they don’t necessarily qualify for something stronger. but even though mild-to-moderate is often referred to as “not that bad” the symptoms that arise can affect quality of life significantly.
“it’s a huge pet peeve of mine, actually. i hear it all the time. ‘oh, it’s just eczema. you’re going to grow out of it,’” said dr. rebecca levy, a pediatric dermatologist with sickkids hospital and centenary hospital. “so much about that is inaccurate and not reflective of what the patients are experiencing. we know that even the mild-to-moderate patients have huge disruptions in their lives, their health and their quality of life.”
it’s never just eczema. severe, relentless itching, whether it covers a large area or a small one, can feel unbearable.
“it really does affect the whole family when even one person has atopic dermatitis,” said dr. melinda gooderham, dermatologist and clinical researcher based in peterborough, ont.
what are the effects of undertreated eczema?
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eczema is a challenging condition to deal with, especially when treatment options fail to provide relief. lack of sleep is one example that can set off a chain reaction, disrupting the whole family’s quality of life and leading to poor concentration the next day.
for the child experiencing it, the symptoms themselves can feel impossible to ignore, but it’s more than that.
“if there’s visible disease, that can lead to teasing at school,” said dr. gooderham, noting that other kids may ask if it’s contagious when it’s not. “it can really affect everything from sleep to mood to how you feel about yourself, your self-worth, and that can also impact the family.”
on the caregiver side, “if your child’s not sleeping, you’re not sleeping,” meaning that the whole house is forced to deal with disrupted sleep and the consequences of that, such as concentration, low mood and mental health.
the caregiver also has to ensure that their child is well taken care of, which can take a lot of time and effort out of their day, time that could be better spent doing other things with their child if they only had medication that works.
“a lot of the treatment regimens include daily bathing and moisturizing and topical treatment application, and so that is in addition to already caring for your child and feeding them and clothing them and all the other things that you need to do as a parent.”
as children get older, those effects can be amplified as they try to navigate through life and figure out who they are as people.
“those impacts on quality of life start to impact school function,” said dr. levy. “in older kids, we see a lot of mental health disorders arising. there can be social isolation because they don’t feel confident in how their skin looks. they become withdrawn. they may not participate in activities … so this is a huge, far-reaching condition with many different facets.”
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crystal sullivan knows this part all too well, having two of her three children diagnosed with ad at young ages.
her oldest, who is now 18, started experiencing eczema when she was between four and five years old, while her youngest, who is now seven, was also diagnosed around the same time. her children’s experiences were starkly different, mainly because of where ad treatment was at the time of their diagnosis.
“my oldest daughter, hers was right on her face so it was something you just see every day, and it would crack and bleed, and it was awful, and it went on forever,” she said. “it almost looked like it was burnt with acid because it was so flared up all the time, and all i had at the time was the cortisone steroid creams,” she said. “they typically thin your skin, and i thought at such a young age, it was such a horrible product to have to use almost daily; otherwise, you would have to experience these horrible flare-ups.”
she also tried everything else she could get her hands on, from over-the-counter creams and prescription creams to oatmeal baths, all to no avail.
“there wasn’t one product that i didn’t try,” sullivan said.
her daughter still dealt with her symptoms throughout childhood and adolescence because her condition wasn’t bad enough to use oral or systemic therapy, but it wasn’t mild enough to find relief with the very limited options that were available. and while it started to lessen as she got older, the extreme case of it being on her face, you can tell that there was “obviously a bit of trauma to it.”
“not that it’s noticeable, but to somebody who knows that it was there,” said sullivan. “if i was staring at myself and i knew i’d gone through something like that, i would know that there was, so i don’t feel that i have that same with my youngest with the product that she was able to or the medication that we were able to use.”
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for her youngest, whose ad appeared in the creases of her arms and elbows and up the backs of her legs, she knew the drill. there were creams, ointments and everything else, but nothing seemed to work, just as it had when her oldest was dealing with it. kids would ask her what was wrong with her legs at school, and sometimes it got so bad it looked like scabies.
“it hurts because you’re trying everything and you can’t help them,” said sullivan. “
but when she saw a facebook post about a potential clinical trial for a new eczema drug, she went for it. the medication they were trialling was a new non-steroidal topical option, zoryve. it has worked wonders for her youngest, with sullivan calling it a game-changer.
drug access for the mild-to-moderate club
innovation has continued to make way for people living with mild-to-moderate eczema, but “access has not caught up,” said dr. gooderham. several new topicals and non-steroidal options have emerged, including jak inhibitors, pde4 inhibitors, and aryl hydrocarbon receptor agonists, all of which calm inflammation, restore the skin and are safer than steroids. but new options don’t always mean access is easy.
“there’s developing the new treatments, which take many, many years of studies and voluntary participants in the clinical trials, and then you get approval from health canada or the fda. you can have a product available in the pharmacy, but then access is the issue,” said dr. gooderham. “if you have private insurance, you have a better chance of accessing these new therapies. whereas public reimbursement lags behind.”
so, when a family doesn’t have private insurance, or what they need isn’t covered under public reimbursement, they’re left to continue to deal with medications that either don’t work, pay out of pocket or wait until the eczema gets bad enough to be covered for severe drugs.
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“the major limiter there is cost,” said dr. levy. “in reality, there’s a huge number of medications which are not covered by the public payer … and the vast majority of non-steroidal medications, even some topical steroids, are not covered.”
she continued, “generally speaking, kids who need systemic therapies can get it, insurance or not. it’s really the kids who don’t quite meet the severity criteria. so, let’s say they’re just under where they would qualify for systemic therapy, and they’re stuck with many, many fewer options.”
those children who are just under the cusp of severe disease and can’t gain access to medications that could help typically get worse, too.
“it’s very frustrating. i can only imagine for the parent and the child. it’s also frustrating for the prescriber because we really want to give our patients the best treatment that we can give them, the safest treatment and the most effective treatment,” said dr. gooderham. “it’s almost like we’ve set ourselves up to not manage the milder patients, wait for them to get severe, and then have even more expensive treatments and more systemic therapy to manage them at that point.”
what’s being done to expand eczema treatment access?
while equitable access to eczema treatment for mild-to-moderate patients isn’t where it should be, many advocacy groups are pushing to get certain medications covered so patients can find relief before their condition worsens.
“in a perfect world, all the medications would be covered,” said dr. levy.
but understanding what mild-to-moderate really means is an important step in getting people, specifically those who make decisions regarding the medical reimbursement of these drugs, to make more equitable decisions.
“mild-to-moderate is such a spectrum, right?” said dr. gooderham. “and most patients with atopic dermatitis fall into that. so, they look at the numbers; this is the largest group of patients with eczema or atopic dermatitis. you know, if we pay for this cream, we’re going to have to pay for it for everyone. so, i think there should be a happy medium where we find out who the patients are who really need it?”
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it’s not about prescribing to everyone, but allowing clinicians to use their own discernment when prescribing medications without forgetting the mild-to-moderate group altogether.
dr. gooderham believes that, at the very least, there should be a limited-use code applied to certain medications so that when doctors believe it could help their patients, they could prescribe using the code.
for sullivan and her daughters, she’s grateful she got access to a newer drug through a clinical trial, but she hopes other children can get the same relief her daughters have found.
“i just hope that everybody has access to it, that if kids or adults or anybody are suffering from something that’s so unnecessary and can be treated, i’ve seen the results. by the time the night’s over and it’s the next day, you’re already in the drying-up healing phase. it’s remarkable,” she said.
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