It’s hard to share my perspective without a little bit of background information. Twenty years ago, I completed my dermatologic cosmetic surgery fellowship and worked with UPMC to open an academically based cosmetic surgery center. Over the ensuing 20 years, I have trained numerous residents of various backgrounds (dermatology, plastic surgery, ear, nose and throat, ophthalmology) and have had eight formal fellows. I have lived through the evolution and growth in this field.
Yes, I have seen the worldwide interest rise for neuromodulators (Botox, Dysport, etc.), fillers (Restylane, Juvederm, etc.) and body contouring surgeries to say the least. However, the biggest change has been in the arena of light-based technologies, including a plethora of lasers, radiofrequency and ultrasound devices meant to tackle just about any problem. While the vast majority of patients seek these treatments for purely elective reasons, to enhance or maintain their appearance, I would like to discuss the patients who have true medical conditions that could benefit greatly from these technological advances.
Whether we like to admit it, as a society, we tend to judge people on their outward appearance. This is what drives patients, for example, to seek out neuromodulators to treat their “11’s” (glabellar lines) when people comment that they look angry. But what about the newborn with a port-wine stain that covers half their face and becomes nodular as the patient ages, or the neurofibromatosis patient with tumors springing up on their face and neck around puberty, or the patient who develops Perry-Romberg syndrome as a young adult and half of their face becomes atrophied through no fault of their own? These conditions cannot simply be covered up, even with the most creative application of makeup.
Now add to this the struggles of being a teenager today. As a parent of three teenagers, I see the challenges they face daily. Many teenagers have faced or witnessed bullying. Bullying has always existed; that is for certain. However, today’s teenagers face bullying in many new dimensions, making it even more difficult for the teenagers to cope at times. Since comments can be made on social media rather than directly to the teen’s face, the perpetrators of mean or rude messages find themselves at liberty to say things that they normally would not say if they had to do so face-to-face.
I will highlight this by discussing a case of a young, 15-year-old female who was referred to me for the treatment of widespread “epidermal nevus syndrome.” For the non-dermatologists, this is a hamartomatous growth that can be isolated to one part of the body, or as in her case, to various parts of her body but most noticeably on the face and neck. The patient has verruciform plaques that range from mildly thick to very thick and verrucous, thus making them impossible to conceal. She has been bullied to the point of depression, but with the support of her family, she has been receiving psychological counseling. Yet, without addressing her condition, I fail to see how she can be helped to overcome the root cause of these issues.
We know the devastating psychological costs that acne scarring, widespread psoriasis and horrible dermatoses have on patients. There are quality of life measurements published in the scientific literature on this topic.1,2,3 But since many conditions, like those I mentioned before, are rare, we do not have the scales available that measure the psychological impact on these patients. These patients exist in a grey zone where they must be suffering psychologically, but how do we convince insurance companies? Many do not qualify, simply because they do not have what is defined as a functional impairment.
I was fortunate that in the case of this young, 15-year-old patient, after the initial denial for coverage for treatment, her mother pushed relentlessly to have the case reviewed by someone with a dermatology background. Given the evaluator’s background (and approval) and the improved laser technology, we were able to treat her facial lesions and restore a great degree of normalcy to her appearance. She did not do this strictly for vanity. This was a painful procedure with a protracted recovery that she had to undergo willingly. At her six-week follow up, the change in both her appearance and her self-confidence was dramatic. She was smiling and making better eye contact!
She is now getting ready to undergo the treatment of the neck area. Is it purely for vanity? I say the answer is a resounding “No!” This is a chance at normalcy. She and her mother are aware of the significant risk of hypopigmentation and scarring when treating the neck, so we will simply be improving what we can and will not aim for 100% clearance. A vain person would have said to do so despite the risk. They did not. They are willing to aim for improvement instead.
Working in an academic setting with many devices and surgical procedures at my disposal, along with the improvement in technologies, it would be a shame not to put our knowledge to use to help patients with these facial or neck deformities. I look at the cost of the treatment as being greatly offset by the reduced need for long-term psychological care or even the reduction in the risk of suicidal behavior. We have only to turn on our televisions to see how teens can be bullied into harming themselves or others.
In closing, I find that my most rewarding patients are the Parry Romberg patient who is now more symmetric following a series of fat grafting, or the linear scleroderma (Coupe de Sabre) patient who can feel more confident going out in public following fat grafting and filler injections, or the neurofibromatosis patient who has fewer tumors jutting out from all parts of the face and neck.
I am lucky to have been able to treat conditions that once were very challenging, and best of all, we were seeing better outcomes than ever before. However, I find that the biggest obstacle to patient care is whether I can successfully convince the patient’s insurance carrier of the medical necessity of the treatment.
We need to revisit the definition of medical necessity or functional impairment to allow us to include patients who have conditions that cannot be concealed, especially on the face. Maybe the definition of functional impairment has to go beyond a strictly mechanical issue to include the psychological impact as well.
Again, the advances in technology today can be of so much benefit to so many patients with previously hard to treat conditions. Maybe the compromise would be to allow us to treat the face and neck lesions, at the very least, so that the patients can have some semblance of a normal life.
Br J Dermatol. 2019 May 17. doi: 10.1111/bjd.18135. A qualitative analysis of psychological distress in hidradenitis suppurativa. Keary E, Hevey D, Tobin AM
J Eur Acad Dermatol Venereol. 2017 Dec;31(12):1999-2009. doi: 10.1111/jdv.14460. Epub 2017 Aug 9. Depression and suicidality in psoriasis: review of the literature including the cytokine theory of depression. Koo J, Marangell LB, Nakamura M, Armstrong A, Jeon C, Bhutani T, Wu JJ
J Am Acad Dermatol. 2018 Sep;79(3):448-456.e30. doi: 10.1016/j.jaad.2018.03.017. Association of atopic dermatitis with depression, anxiety, and suicidal ideation in children and adults: A systematic review and meta-analysis. Rønnstad ATM1, Halling-Overgaard AS1, Hamann CR1, Skov L1, Egeberg A1, Thyssen JP2.