Today, Benzodiazepine Information Coalition turned five. Looking back, I can’t believe how far we’ve come. Help us keep going.
Celebrating Our Progress
When I founded BIC in 2016, there wasn’t much out there. A lot has changed. In 2016, there were just a few Facebook groups; now there are hundreds. A handful of YouTube videos has grown into thousands. BenzoBuddies membership was less than 30,000 users; now it’s over 87,000. I view this growth as a positive. It’s not happening because more patients have been harmed (after all, patients have been consistently harmed by benzos for the last sixty years)—it’s an indication that more patients know why they are harmed. Because of this awareness, they’re joining these groups and accessing life-saving information online that their doctors cannot provide.
I commend everyone out there who is raising awareness and offering their help and support to other suffering people. I’m constantly amazed by the compassion, strength and bravery of so many of those I’ve had the honor to meet in this community, on my own journey back to health.
Making Strides at BIC
I’m extremely proud of our team at BIC and what we have contributed to benzodiazepine awareness in the last five years. Our website and social media continue to expand, reaching more and more people in need of accurate, safe information and help. We’ve assisted more than forty media outlets with benzodiazepine coverage, including Lisa Ling’s Benzo Crisis episode, and have even more stories coming out in 2021 and 2022. Through conferences and other events, we’ve spoken to thousands of physicians. We’ve participated in countless podcasts.
Our efforts to encourage our community to report benzo harm resulted in the FDA’s latest benzodiazepine black box, warning of the risks of physical dependence, long-term withdrawal syndromes, abuse, and addiction. The FDA’s Division of Pharmacovigilance (DPV) even mentioned our campaign in their review:
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.
In the realm of tapering, our (free) publication of the Ashton Manual is ranked consistently as the top one or two on Amazon for both psychopharmacology and medical drug guides. Our (free) Benzodiazepine Tapering Strategies and Solutions resource is wildly popular on our website, providing desperately needed guidance. We continue to participate in Colorado’s Benzo Action Work Group, with the aim of designing a pilot tapering clinic.
We’ve also published a (free) informed consent form for use in clinical practice. And recently, our director, Dr. Christy Huff, spoke about patient lived experience at the Duke Margolis/FDA conference on safe use of benzodiazepines. In addition, BIC is actively collaborating in medical research, with publications forthcoming.
I know without a doubt that our efforts are educating physicians and saving patient lives. On the other hand, while we have made some headway, there is much work to be done: patients are still being harmed and left to navigate their suffering without much information or medical help.
The fact is that benzodiazepine prescribing is changing, with or without us, in ways that have the potential to cause more harm. Our battle moving forward is to keep the patient voice in the conversation—and we need your help to do it.
How You Can Help
Our volunteer team has committed to continuing our work in 2022. Starting now, and through the end of the year, I am asking those who care about this cause and are in a position to give or fundraise to contribute in some way. With most of our work performed by our capable volunteers, nearly every dollar donated goes directly towards benzodiazepine awareness efforts. We are a 501(c)3 nonprofit organization, and donations are tax deductible.
This is how to support us:
- Donate directly via our website.
- Donate directly on our Facebook page or on Instagram.
- Start a fundraiser to benefit us on Facebook.
- Choose us as your Amazon Smile charity.
- Volunteer for grant writing, or any other grant help.
(For the rest of the year we are offering a free BIC T-shirt for any fundraiser or donation over $100.)
I’m incredibly grateful for our team, our community, our supporters, and anyone else who has helped this cause along the way. Let’s keep going.
JC was working on her Masters in Clinical Psychology when she became disabled by taking Ativan as prescribed by her physician. JC founded Benzodiazepine Information Coalition in 2016 to facilitate awareness, education, research and change. JC also volunteers with Colorado’s Benzodiazepine Action Work Group.