Today I sent this written testimony to the Massachusetts state house on behalf of Meghan. It explain some of what we have been going through these past years.
I, Zachary Stein, Ed.D (Harvard, 2014), here offer written testimony in support of Massachusetts House Act 4062, which proposes to alter the processes involved in prescribing benzodiazepines and to increase public awareness of the risks associated with this class of drug.
Our Story: Four Years of Hell
Over four years ago my wife, Meghan Byrnes, began to suffer from an iatrogenic injury resulting from taking klonopin (a commonly prescribed benzodiazepine). Let me clarify that last sentence: Meghan was made profoundly ill simply from faithfully following her doctor’s orders (this is what iatrogenic means: illness resulting from medical treatment). She did not abuse the drug or display any addictive behaviors, nor is what happened a result of some bad combination of drugs. To make a long story short: she took klonopin for 7 years to help with anxiety and work related stress. She took this medication only as prescribed, while living a healthy, active, and productive lifestyle. After beginning to experience increasing side effects such as severe gastrointestinal pain, muscle tightness, memory loss, and increasing anxiety, Meghan began a physician supported 11 month taper off the drug. After completing her taper, my athletic wife was quickly rendered 95% bedridden and too weak to stand, profoundly cognitively impaired with symptoms resembling dementia, and overwhelmed with excruciating psychological, neurological, and physical pain – all from taking a medication that was supposed to help, but eventually harmed instead. Today she is still disabled, but slowly recovering.
As her husband and now also as her caregiver, I have been with Meghan everyday to witness this horrific and almost unbearable suffering, which was brought on by no fault of her own, nor through chance or genetics, but rather through the negligence of the Massachusetts health care system in which we found ourselves. Had this proposed law been in place, my wife and I would not be living the broken and tragic lives we now live. It is my hope that this law will be passed, and that others will be spared our fate.
Like so many others, we were told that the low-dose benzodiazepine Meghan was given was perfectly safe, and we had no reason to question this. I was a graduate student at Harvard at the time, and she was being advised by the well-respected head of psychiatry at the university’s student health services. We felt no need to question his guidance. Some critics of the proposed law claim that doctors should be free to use their discretion and judgment when explaining the risks and benefits of benzodiazepines. However, most doctors I have spoken with (including the one who wrote prescriptions for Meghan) appear to be entirely unaware (or at least deeply misinformed) about the potential dangers, and yet are quick to prescribe it for daily, long-term use – a treatment that even the drug’s manufacturers advise against. If the head of the department of mental health services at one of the most prestigious universities in the country was unaware of the risks, what are we to assume about other prescribers? This must change.
I understand that it is hard to believe this story. I find it hard to believe myself sometimes. How can Meghan’s life have been nearly destroyed by a pharmaceutical drug that was supposed to make it easier? But as we began to look around to try to make sense of what was happening, it quickly became clear that Meghan is far from alone. Benzos have ruined many lives across this country. And to be clear, the majority of those harmed were simply following their doctors orders and taking their medication as prescribed. I reiterate this fact because the only stories that run in the media about the dangers of prescription drugs are stories about addiction and abuse. In fact, the main story of benzodiazepine harm is one of iatrogenesis – not addiction.
The Story of Benzos: The Need for Care, Attention, and Informational Transparency
Although benzodiazepines may be appropriate for a few limited and short-term conditions, they are overwhelmingly prescribed as a treat-all for anxiety, stress, and sleep-related conditions, among other ailments. Its widespread useage is favored by doctors because it really does stop anxiety and induce sleep, quicker and more effectively than most anything else. But the mechanisms by which it operates strongly impair essential neurotransmitter functions, and over time this can result in debilitating brain damage, memory loss, sleep disorders, endocrine and hormonal problems, cognitive disability and dementia, HPA axis and vagus nerve dysfunction, dysautonomia, and a worsening of the very anxiety the drug was originally intended to treat (among many other symptoms). Although these initial neurotransmitter adaptations can occur in as little as a few weeks of daily use, the damage is often slow and insidious, and can take years to present itself. While some of these findings are recent (such as the link between benzodiazepine use and dementia), much of this vital information has been known by researches for decades (in fact, there are over 1600 scientific articles describing the dangers of benzodiazepines.)
According to the American Medical Association, iatrogenic illness is the third leading cause of death in the United States, and over half of these deaths are due to adverse reactions to pharmaceutical drugs. Let that sink in for a minute. You are more likely to die from receiving medical treatments than to die of almost anything else. This is not some fringe, conspiratorial, or anti-science rhetoric; this is data published by the AMA [pdf]. And these statistics only represent deaths, whereas most of those burdened by iatrogenic conditions are not killed outright; instead they are the living dead, often having been profoundly debilitated and disabled. Likewise, this data only represents what happens in hospital settings. When we look at outpatient care, the numbers obviously rise even higher, and there is every reason to suspect that adverse reactions to prescription drugs may in fact be the highest leading cause of death and disability in this country.
The evidence is clear that there needs to be major changes in prescribing practices involving this powerful and dangerous class of medication. However, this proposed law to better regulate benzodiazepines does not hinge upon debates over scientific findings, the FDA, or the pharmaceutical industry. Think what you will on these topics. This law is about a common sense way of increasing transparency and information for doctors and patients, which allows for greater carefulness and attention to be given to each prescription written.
The legal system ought to be primarily about protecting the least well off and most vulnerable among us. Who fits this description better then a desperately sick person in a doctor’s office? This law simply proposes to bring greater carefulness, attention, and informational transparency to bear in what is often an already difficult and confusing situation. What reason could there be to impose limitations on carefulness, attention, and informational transparency? These qualities should characterize every nook and cranny of our health care system. Arguments in favor of slowing the expansion of these essential facets of health care only make sense in the context of deception, greed, or both.
This law ought to be seen less as a condemnation of a certain class of drug which needs new “controls,” and more as an example for how the future of medical care ought to evolve. All healthcare practices should be undertaken with as much care, attention and informational transparency as possible. If Massachusetts seeks to remain at the cutting edge of medical practice and treatments, then it should be leading the way in the social and cultural dimensions of healthcare, which includes mandatory and clear communication with patients about the risks of their treatment.