Accutane’s IPledge dehumanizes transgender patients

Imagine a man seeking treatment for severe acne, and in order to gain access to a powerful acne treatment, he had to take a pregnancy test every month. Sounds crazy, right?

Yet that is exactly what my patient, a college student specializing in filmmaking, had to do.

His acne outbreak, which he compared to “the lava healing Anakin Skywalker’s face in Star Wars” occurred a few years after puberty, his first ever. This new acne breakout was part of a bigger transition – and the hormones he started taking to confirm his identity as a man.

The transition is a particularly vulnerable time. People in transition have usually gone through a long process before reaching out to doctors to help them define their gender identity. They have faced years of frustration at not being in the right “skin”. And for those who are pursuing the big step of starting hormone therapy, their bodies often respond in ways that resemble punishment. Regardless of age, their body can react like a teenager’s – a second puberty sets in. Although the body usually adapts over time, it can be quite difficult to get through it.

As the director of an LGBTQ and HIV-focused dermatology clinic at the University of Pennsylvania (called PRIDE Clinic, for PRoviding Integrated Dermatology for Everyone), I have seen this scenario often in my transgender patients – the acne blazing from the onset of testosterone.

We tried standard acne regimens – topical and systemic antibiotics – but they weren’t effective. Testosterone, for which my patient was paying over $ 300 a month out of pocket because he did not have financial support for his transition, was clearly the root cause of his acne. But if he stopped taking testosterone, his physical transition would either stop or reverse.

He decided to lower his testosterone, a heavy and emotional decision, as it meant that his outward appearance would start to become more feminine. Additionally, we have decided to launch isotretinoin, a potent anti-acne drug better known as Accutane. Although some on the Internet forums discuss in detail the controversies surrounding it (the popular r / Accutane subreddit is one example), dermatologists have a broad consensus that Accutane, a derivative of vitamin A, is one of the most powerful and effective tools we have for combating acne.

But the simple act of trying to acquire the drug added to her problems.

A major concern and a side effect of Accutane is a significant risk of birth defects if a person using it becomes pregnant. As a result, the FDA mandated a risk management program called I promise for all patients taking Accutane to confirm their understanding of the risks of pregnancy during treatment (“I pledge not to get pregnant”, more or less). To “get involved”, you must register in one of the following three categories: man, woman without pregnancy potential or woman with pregnancy potential.

But what if you don’t fit into one of these categories? Does laboratory surveillance in the context of relationships without the potential for pregnancy make sense?

To be clear, a transgender man with a uterus who has vaginal sex can still get pregnant, and it’s important to prevent birth defects. But, despite all the cumbersome obstacles, curious questions, and outdated gender norms, this program has not actually reduced the incidence of pregnancy among people taking Accutane. Oddly enough, other drugs with similar risks of birth defects, such as methotrexate and lithium, do not have a required schedule.

Not only did my patient have to legally register as a woman to get Accutane, she also had to use her birth name and take monthly pregnancy tests. He repeatedly called this experience “dehumanizing”.

Accutane has greatly improved his acne, and the hope is to eventually bring him back to testosterone without this side effect.

It is unfortunate that a well-intentioned drug access program not only achieves its stated goal of preventing pregnancy, but also creates real barriers and stigmatizes the transgender population.

Transgender patients are a vulnerable and underserved population, which is why we founded our LGBT-focused dermatology clinic, in partnership with centers such as the Philadelphia Children’s Hospital Gender and Sexuality Development Clinic and the Mazzoni Center. Just dealing with acne in this population can quickly become a big task. Along with facing many obstacles, many of which are dermatology-related, we know that serious health risks remain, such as depression and anxiety. In addition, transgender women, for example, may be particularly exposed to HIV and illicit injectable silicone use, which can be fatal.

Healthcare strives to learn how to meet the needs of the transgender population, estimated at around 0.6% of all Americans. But just like puberty (and second puberty), there are still many growing pains. A 2015 survey of transgender people showed that 15% said they were asked unnecessary or invasive questions. Oddly, 1% even said they had been sexually assaulted in health care settings.

In a time with increase proposed bans to limit access of transgender youth to school sports and gender-affirming care, improving our healthcare system is imperative to make everyone feel welcome, so that my patient and others like him not only reconcile their gender identity, but also feel respected in doctors’ offices.

Jules Lipoff is Assistant Professor of Dermatology at the Perelman School of Medicine at the University of Pennsylvania.


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