When meds taken “as prescribed” still cause harm

“I was a good patient, and I paid the ultimate price.”

Geraldine Burns, patient advocate

When someone develops a physical dependence on a medication, others might assume that they were taking too much or abusing the drug. However, there is growing recognition in the medical community that some medications can lead to physical dependence and withdrawal, even when taken exactly as directed by a doctor.

For example, many patients who were prescribed opioids after an injury or routine surgery found themselves dependent on the drug. The Centers for Disease Control & Prevention (CDC) emphasizes in their Rx Awareness campaign that opioid side effects such as tolerance and withdrawal symptoms can happen, even when the medication is taken as directed.

For the past several years, a group of advocates has been sounding the alarm about a similar phenomenon with benzodiazepines, or “benzos” — a class of medications commonly prescribed for anxiety and insomnia, including Xanax, Ativan, and Klonopin. The use of benzos increased tremendously in the beginning of the 2000s; according to the US Food and Drug Administration, the total quantity of benzodiazepine prescriptions adults filled more than tripled from 1996 to 2013. The pandemic and associated stresses appears to have spurred an increase in benzo use among women in particular.

While benzos are meant to be prescribed for short-term use, half of the people who receive them end up taking them for two months or more. An estimated 30% of patients prescribed benzos experience withdrawal, with symptoms that can range from psychological (anxiety, depression, and suicidal thoughts) to physical (fatigue, tremors, and muscle tics) to mental (brain fog and forgetfulness). For those who have suffered years of debilitating effects from benzodiazepine withdrawal (some call themselves “benzo survivors”), raising awareness both among patients and doctors about the potential impact of these drugs has become a calling.

The upcoming documentary film, “As Prescribed,” created by benzo survivor and filmmaker Holly Hardman, shares the stories of people in all stages of benzo withdrawal — some in the middle of the tapering process, some just beginning their journey, and others who have recovered. I was lucky enough to get a sneak peek of this work in progress. Through emotional interviews, Hardman shows the massive impact benzos have had on these individuals’ physical, social, and financial health.

Trailer for “As Prescribed” documentary

The medium lends itself particularly well to showing the physical effect of benzos. In one gutting scene, the father of a man struggling with psychiatric drug tolerance and withdrawal symptoms becomes emotional when looking at old photos of his son; his once ebullient child has become gaunt and emotionless. In another happier example, the film shows a woman recovering from withdrawal. In the later stages of recovery, you see her eyes have become more alert and her physical tics have receded. These “before and after” examples are powerful to watch.

The film also touches on the disparate impact of benzo withdrawal for people of color. When Sam, a young Black man in San Jose, had an anxiety attack from Klonopin withdrawal, he encounters stigma from the health care system. “They treat me like a crack addict,” Sam said.

Although many of these survivors’ stories involve loss, their resilience and desire to help others avoid a similar situation are central to the film. The documentary tracks the progress of the “Benzo Bill” in Massachusetts, which would require written informed consent from patients before being prescribed a benzodiazepine and establish protocols for safe tapering of these medications. The journey of the MA legislation shows some of the obstacles that advocates face and the importance of collaboration between patients and doctors.

“As Prescribed” shines a light on a lesser-known drug epidemic, putting the personal stories of survivors in the context of our broken health care system. Learn more about “As Prescribed” and keep an eye out for the release later in 2022.