When I was 17 and a freshman in college, I began taking isotretinoin – a medication more commonly known by its former brand name, Accutane – to treat my severe acne. After taking two pills every day for six months, I successfully finished my treatment, and today the shallow scars on my cheeks are the only visible hint of the process.
I’m very thankful to be free of the acne that once made me miserable, but I’ll never forget the equally miserable experience of being a woman on Accutane and being condescended to and disrespected by both my prescriber and the FDA every step of the way.
There’s a shared understanding between past and present acne-sufferers that every aspect of the Accutane experience is absolutely the worst, but that much is to be expected for a substance so strong it doubles as a chemotherapy drug to treat some types of cancer.
Accutane has been linked to vision loss, bone and muscle weakness, hair loss, nausea, fatigue, and in some instances, depression and suicidal thoughts. The scary side effects usually account for a lot of the press and controversy surrounding the drug, but the exhausting FDA rules and policies associated with it don’t generate nearly as much outrage as they should, even as they continue to torment patients.
In 2006, the FDA launched iPledge, a self-described “risk management program” that aims to prevent patients who are capable of having children from getting pregnant during treatment, because babies exposed to isotretinoin during pregnancy are at risk of developing birth defects.
While it makes sense that patients should be well-informed about the risks of becoming pregnant while on Accutane, iPledge is downright invasive. All patients are required to register with iPledge, but as a patient who could become pregnant, I was subjected to a series of additional rigid rules.
Before I could even get my initial prescription, I had to complete two negative pregnancy tests a month apart from each other. I also had to commit to using two types of birth control throughout the duration of the treatment and discuss in lengthy detail with my prescriber my commitment to both birth control and safe sex.
Every month after that, I had to take – you guessed it – another pregnancy test before I could get a refill. In fact, each month I had a seven-day window of time to get my blood drawn for a pregnancy test, have that pregnancy test sent over to my prescriber, visit my prescriber in person to be interrogated about whether I plan to become pregnant, have my prescriber input my information into the iPledge system and call in the prescription, correctly answer an online quiz about safe sex on the iPledge website and then, finally, go pick up the prescription from the pharmacy.
If for whatever reason it took longer than seven days to do all these things, or if any one step went wrong, I risked getting locked out of the iPledge system and being unable to continue treatment until one whole month later (after another negative pregnancy test, of course).
Everything that could go wrong did go wrong at least once.
During the first month, I had to get my blood drawn twice in one week because nobody thought to tell me that iPledge only accepts pregnancy tests that are more than 30 days apart, and my first blood draw was completely void because it was a day or two early.
As a busy full-time student alone in New York with no transportation, trudging through the snow from my dorm room to the nearest LabCorp to have my blood drawn at 7 in the morning was not how I wanted to be spending my time – especially because the only reason I was going was to prove, over and over, that I was not pregnant.
The next month, I was locked out of the iPledge system and unable to receive my prescription for a month because my prescriber made a mistake while inputting my information. I sat on hold for hours in between classes trying to speak to an iPledge customer service person in hope that I could resume my treatment if I just explained the simple error and verified my information. No one would budge – policy was policy, no matter how useless.
The fact that any of this happened is not okay, but when I started looking more into iPledge’s history, I realized that my misadventures were just the tip of the iceberg.
One afternoon I unearthed an old iPledge video called Be Prepared, Be Protected. “You are only abstinent if you know you will not be tempted to have sex,” the video’s narrator says between cheesy montages of teenage girls looking distraught. “Think about it. Are you really abstinent?”
“I thought I was abstinent, I guess I didn’t know what abstinence really means. Now I do,” one of the girls says wistfully.
Abstinence is an acceptable form of birth control for Accutane patients, but iPledge’s messaging to patients, including this bizarre video, insinuates that patients are irresponsible, unintelligent and can’t be trusted to make their own choices about sex. I think that’s what all my anger really boils down to – it’s the way these rules demean and infantilize patients in every way imaginable.
Even the design of the pill packs somehow felt insulting. Every time I took out an individual pill, I had to peel back a little printed drawing of a pregnant woman with a big red X through it.
Ironically, my list of moral and ethical grievances has piled so high that I often completely forget about how awful it physically felt to be on Accutane. During my six months of treatment, I experienced nearly every side effect that I was warned about – my bones and muscles felt fragile, I broke out into hives constantly, my skin and eyes became painfully dry and I suffered constant fatigue and headaches that would leave me feeling winded after walking up the driveway. But the patient experience at a basic human level was far worse, at least for me, than any of those side effects.
My experience with iPledge is just one manifestation of the way that our healthcare industry consistently fails marginalized groups of people, whether it be gender or racial minorities. It’s a privilege to say that this has been my only serious negative medical experience – jarring, harmful and wildly insensitive medical experiences are the norm for trans and queer patients and patients of color, especially when it comes to Black patients.
In fact, iPledge itself has little to no regard for patients’ sexualities and gender identities. The system categorizes patients as female (can get pregnant) and male (can’t get pregnant), and I can only imagine the skepticism and disrespect that openly queer and trans patients are met with when trying to get a prescription.
It’s instances like these that make me question why and how we still haven’t grasped the fact that medicine, science and social justice are all inextricably linked: I can only speak for the college-age demographic, but I’m amazed by the number of STEM students I encounter that have no understanding of social issues because they don’t think it applies to their field.
There are so many medical professionals who think it’s not in their interest to care about reproductive rights, gender, race and social justice, but this lack of concern is part of the reason why ignorant and uninformed policies like iPledge are still in effect. If we’re serious about changing outdated medical policies that harm patients, we’ve got to start by addressing the ideas and attitudes upon which they are founded.
