Do No Harm: Topical Steroids and Medical Negligence
Do No Harm: The Dangers of Medical Negligence
On March 16, 2018, a young man from Western Canada, (referred to hereafter simply as KJ in order to protect his identity and the privacy of his family and loved ones), posted an Audioslave video on his Facebook page with the simple message, “It’s time to turn out the lights.” Shortly thereafter, just as Chris Cornell, the lead singer of Audioslave had done the year before, KJ took his own life.
Conventionally handsome, with sparkling blue eyes and cheekbones that people more often than not pay to have, KJ appeared to have it all, and when he first contacted me in 2016 about his steroid damage, he spoke candidly about his girlfriend in Germany and his love of cooking. His life appeared well-rounded prior to him being treated for a fungal infection and his social media was littered with photos of his niece and nephew. And, If someone were to read the messages of condolence underneath his final Facebook post, they’d quickly discover that KJ was extremely respected and well-loved by his family and friends. The posts also reveal that fact that, in the last few years leading up to his death, he’d been struggling physical and mental health issues.
One of the most tragic aspects about KJ’s death and the decline of his mental health was the fact that both were, in many ways, completely avoidable. His death is one of many in a medical system where doctor accountability is practically non-existent and that leans too heavily on pharmaceuticals as a quick fix; even when the risk of negative side effects from treatment outweighs the benefits. And after the damage is done, especially in Canada, there is little support for those seeking answers and help due to a pervasive culture in this country of vigorously protecting the doctor over the patient. This fact is borne out in the statistics around malpractice complaints and cases in Canada.
A CBC investigative report this year found that were substantial obstacles for injured plaintiffs and their loved ones to obtain financial compensation for iatrogenic injuries. Not only did they find that the rate of injured patients and/or family members suing is in decline, the number of judgements in favour of the plaintiffs in the small amount of cases that actually make it to the courts stands at less than 2%. Sadly, this is not because Canada has nearly impeccable care and very few doctors making preventable mistakes. In fact, it’s quite the opposite. A thought-provoking video released by the University Health Network of hospitals in Toronto in 2015 stated that, in 2014 alone, more than 30 000 Canadians died from medical errors. But what about those people who are injured, but not to the point where they are needing care or unable to work? What about those whose quality of life is forever altered due to the carelessness of a doctor?
When KJ initially contacted me, he was searching for answers about the steroid atrophy on the skin of his penis and groin as well as possible treatments. He’d been given an antifungal and steroid combination cream by a dermatologist for jock itch. Not only are steroids not a viable treatment for jock itch (which is caused by fungal overgrowth), they usually make the situation worse. The only symptoms that cortisol might relieve in terms of jock itch is the actual itchiness and some of the pain from the inflammation associated with the condition. Having been told the cream contained hydrocortisone and to use it daily for two weeks on and then two weeks off, KJ trusted the doctor when he was given repeat prescriptions and used it for seven months. What he didn’t realize until much later was that the steroid contained in the cream he was using was actually betamethasone valerate, not hydrocortisone as he’d been led to believe. Betamethasone is a much stronger steroid than hydrocortisone and nearly all the inserts and medical sites I’ve researched strongly advise that it not be applied for more than two weeks nor is it appropriate for use on the face. Furthermore, the skin of the penis is thin and delicate and the entire groin area is nearly always under occlusion which means steroids can be absorbed more quickly and to a greater degree than on thicker, uncovered skin such as the hands or legs.
As Brianna Banos, the filmmaker behind the documentary, Preventable: Protecting Our Largest Organ, discovered during the course of her research, in India there was a huge issue concerning the same condition KJ had. People were able to purchase antifungal creams mixed with a steroid over the counter. As she explains, “many were using it without seeking a medical professional help. In doing so, the steroid was actually feeding the fungus and making it worse.” India, Banos says, took steps to stop the indiscriminate sale of these creams in order to rectify the problem.
In Canada, however, some dermatologists, like the one that KJ saw, continue to prescribe topical steroids in a cavalier manner for a variety of inappropriate conditions, including fungal infections and skin lightening. These same doctors often advise patients to use steroids long-term without adequate oversight which pretty much guarantees adverse side effects. And topical steroid side effects can be both cutaneous and systemic. These adverse effects include: rosacea, skin and fat atrophy, skin fragility and impaired healing, wrinkling, striae, purpura, spider veins, hypopigmentation, scarring, cataracts and glaucoma as well as suppression of the hypothalamic-pituitary-adrenal cortex which can lead to the development of Cushing’s Disease. Ironically, patients using steroids over a long period of time, even with breaks between usage, often find themselves having to apply more and more of the creams at a stronger potency just to reduce the flare-ups of skin conditions such as psoriasis or eczema. And when they try to stop using steroids, many will experience what is known as ‘topical steroid addiction’ or ‘red skin syndrome’.
This brings me back to KJ and his experience with a topical steroid that was prescribed by a Canadian dermatologist for seven months for use on his groin and penis. As the redness spread and the pain increased, KJ finally suggested to his prescribing dermatologist that the steroid component in the clotrimazole-betamethasone lotion might actually be the cause of the worsening condition of his skin. By that time, the thinned skin on areas of his penis was shiny and weeping fluid. Though the information in the leaflet for the medication indicates that jock itch should only be treated for two weeks, it also mentions ‘or as prescribed by your doctor’. Banos is adamant that this needs to change. “These inserts list a massive precaution about not using these drugs past a certain time frame (usually 2 weeks, max), but then people are put on this for YEARS because the insert states, ‘unless prescribed by your doctor’, completely undermining the necessary precaution in the first place, AND not putting any accountability on the prescriber.”
Over the course of approximately a year, KJ contacted me, expressing his disbelief and frustration with the fact that he wasn’t fully informed about the potential adverse effects of the steroid cream and about the gravity of the damage done to his skin by a dermatologist. After all, dermatologists are who we look to to help protect the health and integrity of our skin, our largest organ, not to damage it beyond repair. On different occasions, KJ wrote, “I simply can’t believe it…This is traumatizing” and, “It’s unbearable.” He also told me that the skin was still so thinned and red after being off the steroid cream for more than a year, he was sure that the damage was permanent though he continued searching for answers as to how he might safely heal his skin and ease his pain.
What KJ was looking for was support, validation of his iatrogenic injuries and help rectifying the damage done to him. This is where the medical system let him down a second time. Rather than immediately admitting the iatrogenic nature of his injury and supporting him, the dermatologist, according to KJ, for months refused to, “recognize that anything was wrong.” As atrophy on areas where the epidermis and dermis are thin, such as the face and genitals, is the most common adverse side effect of prolonged topical steroid use, there should’ve been no question after seven months of use that the shiny, reddened skin on KJ’s groin and penis was due to atrophy which also causes damage to the skin’s protective barrier. Eventually, after the skin showed no sign of healing, the doctor conceded that there was an issue in the areas where the steroid had been used, and recommended that Retin-A and laser be tried in an attempt to, presumably, thicken the skin. According to doctors I spoke with, including UK burns specialist, Mr. Jeremy Rawlins, lasers should not be used on thin, steroid damaged skin due to the risk of burns. Regardless, by that time, KJ’s trust in this doctor and the medical community was so eroded, he didn’t attempt either suggestion. The sad thing is, once steroid atrophy and scarring sets in, there is no viable treatment that will get the skin back to a healthy, thick condition. Think of aged skin. There is currently no way to reverse atrophy and regenerate skin though dermal substitutes, such as Matriderm, and some cellular treatments such as PRP and stem cell fat grafting are being used in revolutionary ways to help burns patients.
The last time KJ communicated with me was in December of 2017. Less than three months later, he took his life. Sadly, his experience is not unique. Every year, thousands of people around the globe are injured, some severely, by the indiscriminate prescribing of topical steroids. This includes patients whose lives are put on hold while they go through the often debilitating process of topical steroid withdrawal. Unable to work or to socialize, many of these people end up completely reliant on family members and loved ones. Many are so desperate, they turn to immune modulating drugs like Dupilumab to try to get their lives back. While I was out for a drink with my friend, Adrian, the other night, we talked about the writing of this article. He wasn’t surprised by KJ’s story at all. “I have a friend who was also prescribed a steroid for the same issue,” he told me. “Now the skin at the base of his penis is so thin, it tears when he has sex.”
The thing is, KJ’s story isn’t just about the dangers of long-term topical steroid use or the careless prescribing of the same to patients by Canadian dermatologists and doctors. It’s about a system in which doctors are so protected, some don’t feel the need to fully inform patients before treatment nor to disclose an iatrogenic injury when one occurs. And, although the College of Physicians and Surgeons of Ontario’s website states that full consent includes the disclosure of any harm to the patient that happens as a result of treatment, in reality, that doesn’t take place. The CPSO clearly states that, “harm means an unintended outcome arising during the course of treatment, which may be reasonably expected to negatively affect a patient’s health and/or quality of life.” Surely, the atrophying of skin to the point where it is unbearable to touch, including against the fabric of underwear, meets the definition of a side effect that can be reasonably predicted to alter someone’s quality of life and, at the very least, his sexual health. It’s also the story of a young man left with the psychological trauma of being injured and then abandoned after putting his trust into the doctor-patient fiduciary relationship. Suhein Beck, author of Topical Steroid Side Effects, dedicates an entire chapter in her book to post-traumatic stress disorder induced by TSW. Lastly, KJ’s story is about a system that continues to rely too heavily on traditional drugs that generate large profits for pharmaceutical companies, rather than demanding better, more advanced and innovative treatments for patients. Perhaps author Beck sums it up best: “If the truth was known about topical steroids, the dermatology industry would be forced to go back into research and development to innovate new alternatives. Until the truth comes out, they will keep this dependent and toxic love affair with corticosteroids.”
Sources:
College of Physicians and Surgeons of Ontario, “Disclosure of Harm.” https://www.cpso.on.ca/Physicians/Policies-Guidance/Policies/Disclosure-of-Harm
Fukaya, Mototsugu et. al. “Topical Steroid addiction in atopic dermatitis.” Drug, healthcare and patient safety vol.6 131–8. 14 Oct. 2014, doi: 10.2147/DHPS.56920
Noshee, Habiba and Andrew Culbert, “As fewer patients sue their doctor, the rate of winning malpractice suits is dropping too.” CBC News April 18, 2019, https://www.cbc.ca/news/health/medical-malpractice-doctors-lawsuits-canada-1.4913960
UHN Toronto, “UHN pioneers discussion about medical errors in Canada.” June 17, 2015. https://www.youtube.com/watch?v=emouSWPr5xA&t=8s
Interview between Mary Jennifer Payne and Brianna Banos, July 19, 2019.
Interview between Mary Jennifer Payne and Suhein Beck, July 20, 2019.