In 2017, Benzodiazepine Information Coalition initiated a campaign reporting patient harm to the FDA through their MedWatch Adverse Event Reporting System. Many of the Facebook groups, BenzoBuddies and World Benzodiazepine Awareness Day joined in. We shared our message far and wide, with volunteers spending hours on the phone helping some patients too sick to fill out their own form without support. Thousands of benzodiazepine harmed patients stepped up and participated. As a result, the FDA reports increased.
In September, 2020 the FDA announced their plans to change all benzodiazepine labeling, declaring it insufficient. They also announced their plans to add a black box based on new concerns about withdrawal issues with benzodiazepines, including long term post-withdrawal complications. In the near future BIC will write a summary of of all these changes and our findings from our Freedom of Information Act request. In the meantime, for those interested, the full response to our Freedom of Information Act request can be viewed by clicking here.
I am pleased to see that our work together as a community has made a real, tangible difference. Our reporting campaign is mentioned on page 16 of this FOIA request stating:
DPV conducted a search of FAERS and completed a pharmacovigilance memorandum in January 2018 in response to an observed increase in benzodiazepine AE reports submitted by patients describing prolonged symptoms after benzodiazepine withdrawal and failed attempts at discontinuation of benzodiazepines . DPV found that this increase in reporting was likely due to an online call to action by the Benzodiazepine Information Coalition soliciting all patients injured by benzodiazepines to report their experiences to the FDA. However, DPV also identified several themes in the FAERS reports, including: lack of physician education/knowledge regarding benzodiazepine prescribing, lack of patient education by the physician at the time of prescribing, or a prescribed tapering schedule that did not prevent withdrawal symptoms (i.e. taper was too rapid).
While we need to wade through all of the information to gain a fuller picture, this FDA announcement brings us hope that useful, life-saving change is coming. It’s clear, from an initial reading, that the FDA still doesn’t understand how slowly these drugs need to be tapered for many or that their available dosages are too large for safe cessation. I ask anyone who has not yet reported their harm to do it now. Report by clicking here.
Before BIC, BALA (Benzodiazepine Awareness and Legal Action), a (now closed) Facebook group I co-founded around 2014/2015, had a motto that we frequently repeated. “Together we are heard, together we are strong.” We have proven that true. Let’s keep going!
I wish all of our American readers a Happy Thanksgiving! For those who are too sick to celebrate, please don’t lose hope. Remember to join us on December 1st (Giving Tuesday) as we ask for support to continue this important work. We’re getting closer and closer to solving this thing.
JC Curle was working on her Masters in Clinical Psychology when she became disabled by taking Ativan as prescribed by her physician. She founded Benzodiazepine Information Coalition in 2016 to facilitate awareness, education, research and change.