“Benzodiazepines help some people.” This common response to our message of patient harm prevention is echoed throughout our online platforms. In some ways, who can blame these commenters? The opioid epidemic, to which the media frequently and errantly compares benzodiazepines, was a disaster for chronic pain patients. Forced withdrawal from benzodiazepines is both common and inhumane. At first glance, our message, without consideration and context, may seem threatening. The truth is we at Benzodiazepine Information Coalition (BIC) are advocating for all patients, including those having success on benzos. Perhaps I can provide some clarification.
To begin, don’t worry — we know benzos help some people. We aren’t arguing that they don’t. We seek to improve patient safety. BIC’s mission is not to ban or restrict benzodiazepines. As long as patients are receiving accurate informed consent, we do not seek to control anyone’s personal medical decisions. Just the opposite — we use our platform to fight for patients who wish to remain on benzodiazepines should anyone attempt to force them off.
BIC’s mission is not to ban or restrict benzodiazepines. As long as patients are receiving accurate informed consent, we do not seek to control anyone’s personal medical decisions.
We are aware that benzodiazepines can be quite useful intermittently and in the short-term (weeks) and acknowledge that there are a small percentage of patients for whom long-term use, with fully informed consent of all risks, may prove beneficial. We also know that a minority of patients, for reasons completely unknown, experience zero problems on the medication long term and have no trouble stopping them no matter what discontinuation method is used. None of this is news to us.
Patient Safety Matters
Some patients reporting success on a medication doesn’t mean that the failures can be dismissed. What we’ve found is that medical providers are often inadequately trained regarding benzodiazepines. Doctors are prescribing and deprescribing benzodiazepines without having full knowledge of the consequences; impeding their patients from providing fully informed consent.
These medications carry, amongst other problems, a risk of a dangerous and lengthy withdrawal syndrome that can continue months to years beyond cessation. Estimates say that a majority of patients on long-term benzodiazepines will experience some sort of withdrawal, with a significant percentage being severe and long-lasting.
Benzo-created problems are nothing to scoff at. One of the longest, nastiest and most disabling syndromes in existence is caused by stopping these medications. Even from patients who have experienced other tragedies—like cancer, the death of a child, or war, testimonies flood our inboxes naming this benzodiazepine-created syndrome as the worst experience of their life. There are typically resources available to assist and support people through the most tragic events in their lives, yet meaningful support for victims of prescribed harm remains nonexistent. Instead of receiving compassion and care, suffering is often denied and attacked, patients are blamed and falsely labeled as addicts, or accused of “fear mongering” or “pill shaming.”
Even from patients who have experienced other tragedies—like cancer, the death of a child, or war, testimonies flood our inboxes naming this benzodiazepine-created syndrome as the worst experience of their life.
The patient cost of this prescribed harm epidemic is too high. Beyond serious and dangerous withdrawals, some patients develop neurological damage when stopping which can persist for years after the last dose. Additionally, some patients develop adverse effects on the medication that are misdiagnosed and unrecognized as benzo-related. Tragically, in response, the benzo doses are often increased, creating a never ending loop of illness.
Many benzo harmed patients, after receiving inadequate or dangerous direction from their prescriber, identify the problem on their own. This has led to the evolution of large online patient communities where benzo harmed people from all walks of life, even medical professionals, exchange information and provide each other with support. Consulting the internet for guidance on benzo harm because answers aren’t available from the medical field is unacceptable, but it is currently the norm.
Everyone Benefits From Accurate Benzo Education
This isn’t an “us versus them” situation, nor should it be pitting the “good outcome” patients against the bad. All outcomes deserve a seat at the table. Many of the “good outcome” patients will become harmed. A lot of us were once considered to be “good outcomes,” blissfully ignorant of the horror ahead. Silencing our efforts to improve patient safety creates harm, even for the patients benzos currently help.
When we are speaking about harm, we are not arguing that anyone should be restricted or removed from their prescription. This is dangerous and can result in disability or even death! We are calling for reliable research and education so medicine can improve their knowledge base around this issue and patients receive better care.
Some people become upset with prescription-related activism of any kind, believing that drawing any attention to the issue will mimic the opioid crisis, where compliant patients are involuntarily detoxed from medications they needed to function. This is exactly what accurate education would prevent! Calls for forced withdrawal, extreme restrictions or total bans occur when prescribers and the media erroneously place all benzo-related issues under the umbrella of addiction. All of our work vocally opposes this approach. In our engagements with media, we aggressively call for a stop to identifying prescribed patients as addicts, to make clear on the distinction between drug abuse and prescribed physical dependence, and to cease relaying a false, alarmist and quite frankly, patient blaming, narrative about benzodiazepines to the public.
Shifting the focus of a discussion about patient harm to an argument about benefit is essentially saying that the lives of harmed patients don’t matter.
Shifting the focus of a discussion about patient harm to an argument about benefit is essentially saying that the lives of harmed patients don’t matter. Part of the medical field’s responsibility is to avoid preventable harm and revise educational curriculum when more accurate information is presented. Making the risks of medical treatments known before we participate in them and insisting doctors are adequately trained to understand and effectively manage poor outcomes of their prescribing is a public health service. Denying this discussion because “benzos help some people” diverts us from the reality that many patients are abandoned, harmed and killed by current benzodiazepine practices. Everyone should care about that.
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.