In 2017, Benzodiazepine Information Coalition (BIC) led a community-wide reporting drive through MedWatch, the FDA’s adverse event reporting program, which, in part, resulted in the 2020 FDA boxed warning on benzodiazepines. To read more about the warning go here.
In response to the warning, the FDA awarded a $1,670,555 grant to the American Society of Addiction Medicine (ASAM) to formulate benzodiazepine deprescribing guidelines. ASAM recruited members of the benzo-harmed community, including members of BIC, to serve on the patient advisory panel during the guideline creation.
All eligible members of both BIC’s and the Alliance for Benzodiazepine Best Practice’s Medical Advisory Board applied to serve on the ASAM-elected medical advisory panel, but, unfortunately, none were accepted. We believe it was an egregious error to exclude all eligible medical professionals from the two most experienced nonprofit organizations at the forefront of this public health crisis.
In February, 2024, ASAM shared the literature review outline with the patient panel. The review found that the literature was very sparse on this topic and, as such, there was little evidence for best practices in benzodiazepine deprescribing or adjunctive treatments.
Later, the patient panel was presented with a draft outline for the guidance. The patient panel expressed serious concern over many of the recommendations in that draft guidance. Many, including two MDs with lived experience, volunteered to help the committee get it right, but the patient panel was not engaged further.
Instead, ASAM let us know they would post their completed guidance on their website. It is open for public feedback until July 19, 2024. The patient panel is scheduled to meet again with the ASAM in July for a “benzodiazepine tapering guideline listening session” for a chance to verbally address feedback on the draft benzodiazepine tapering guideline that was sent out for public comment. The public is not invited to attend this session, but two members of our organization will be there.
It’s important for anyone who cares about this issue to provide feedback on this draft, as comments may be incorporated in the final deprescribing guidelines. We believe these final guidelines could be the go-to for prescribers in the US for the next many years. The final guidance should be completed and released in early 2025. Click the button below to leave your comments and have your voice heard!
July 27, 2024 Update: The comment period is now closed
This was my comment on the ASAM Draft:
The problems with the proposed draft have already been clearly addressed by medical professionals.
The very fact that no medical professional with the lived experience of the hellish symptoms of benzodiazepine taper and/or withdrawal was included in the formation of this draft is more than disheartening, and, frankly, a very curious decision that gives this old man a shudder of raw fear.
After decades of disregarded evidence, the FDA at last placed a warning on the labels.
Now, it seems some physicians and psychiatric service groups can’t get the patients off quickly enough, never mind the ubiquitous evidence available on the internet, particularly YouTube and the comments on Benzodiazepine patient support YT channels, that tapering and withdrawal are often literal torture.
Prescribers need to know that many, if not most, people who have been prescribed these medications for weeks or months (in my case, thirty years) are not just “in danger” of becoming physically dependent…they are already physically dependent. I am already physically dependent, imprisoned by this medication that I now vehemently detest. It is too late to take us off the medications to avoid physical dependency.
I have been through some of these experiences. There simply are no words to describe the mental and physical anguish of tapering too quickly, and I do mean “just” a taper. The only time my benzodiazepine was stopped altogether was when a prescriber attempted to switch me from one benzodiazepine to another benzodiazepine. For whatever reason, it did not work. My mind was like a hurricane, pulling itself apart. It was not wrong thinking that caused these symptoms. It was because the benzodiazepine I had taken for years had been abruptly discontinued.
Any attempted description of benzodiazepine tapers and/or withdrawal would be limited by the imagination of anyone who has not experienced this. The most common descriptives I seem to see in the comments of people’s experience are “hell” and “living hell”.
I’m not trying to burn bridges, or be adversarial. I am trying desperately to be forthright:
Where, from you, is the clear and steady alarm regarding the horrors that await a large percentage of benzodiazepine users who completely discontinue the medications, even with a slow taper? Where is the information to instill the humane fear in prescribers that taking patients (especially seniors) off benzodiazepines can be sentencing them to protracted post withdrawal symptoms, even permanent debilitation with physical pain and mental torment that has caused some, in despair, to even taken their own lives to escape those unbearable symptoms?
Your telling patients how they must come off benzodiazepines, if you have not experienced it, in view of all the testimonies and evidence, is more than astonishing. It is breathtakingly terrifying.