A short while ago, I found myself once again in Room B-1 of The Massachusetts State House. Except now, I was calmer, more cognitively healed and far more aware of the stakes of what was about to transpire before me. It was September 12th and the second public hearing for H.3594, An Act Relative to Benzodiazepines and Non-Benzodiazepine Hypnotics, was being held. The ‘MA. Benzo Bill’ was filed by Representative Paul McMurtry of Dedham at the behest of Geraldine Burns and family. After an initial hearing in April 2016, an original version was sent to study during that legislative session for further review. It was now once again time for sides to present their testimonies before a new Joint Committee on Mental Health, Substance Use and Recovery.

Benzodiazepines are tranquillizers which include well-known names like Valium, Klonopin and Xanax. Non-Benzodiazepine Hypnotics are ‘Z Sleep Drugs’ such as Ambien and Lunesta. H. 3594 would require pharmacists to distribute pamphlets containing information on misuse and abuse, risk of dependency and addiction, handling and addiction treatment resources.

Although addiction is an extremely important concern for any abused substance, none of the victims who testified in support of this bill did so because of it. Instead, nearly all supporting Massachusetts residents (including myself) spoke of iatrogenic harm caused by taking this class of drug as prescribed. In fact, “as prescribed” has become a sort of motto for the community. The proposed legislation would require patients’ written informed consent regarding both the risk of substance abuse as well as the risk of long-term use. Prescription labels would also include a bolded cautionary statement regarding long-term use.

This would be a major legislative response to the prescribing patterns for these drugs today. The bill also seeks that prescriptions for less than a 10-day supply not be refilled. Finally, H. 3594 calls for a special commission to study safe discontinuation protocols that would minimize withdrawal symptoms. This is also a potential major development to the status quo in psychiatry today.

What the Opposition Had to Say

Three Boston area psychiatrists testified against the bill: Carl Salzman, Edward Silberman and Hilary Connery (who served as my former clinical director at McLean Hospital). Together, they are affiliated with the medical schools of both Harvard and Tufts University as well as Beth Israel, Massachusetts General and McLean Hospitals. Additionally, a longtime patient of Salzman’s testified. Both the Massachusetts Medical Society and Massachusetts Psychiatric Society submitted statements in opposition.

Salzman’s Testimony

Carl Salzman stated that he had not done research with benzos for some time, and that he had no relationship to any drug companies of any kind. He told the committee that benzodiazepines are “safe and effective” drugs when “prescribed in appropriate ways and monitored appropriately.” The drugs’ side effects, he said, “are relatively mild with appropriate doses.” He warned that New York State had previously regulated the prescribing of benzodiazepines with negative results. The New York Law required a government agency to monitor physician prescribing and patient use in an attempt to undermine illicit use. While benzo prescribing decreased, the legislation led to the use of “more toxic and addictive” barbiturates and alcohol, Salzman said. He stated that he would not repeat his testimony from 2016, but would resubmit in writing.

Here is what he wrote, and my response—as one of the advocates for the bill—to his claims.

Salzman: “Benzodiazepines do not cause Alzheimer’s disorder or other brain or emotional disorders.”

Response: Although I am unsure if anyone who submitted testimony in support of this bill mentioned Alzheimer’s, a large majority claimed cognitive impairment. As for the possible link of benzodiazepine use to Alzheimer’s, see here, here and here. Indeed, according to Salzman’s own written comments and study, these drugs impair cognitive function in the elderly. There is also abundant research documenting that long-term use of benzodiazepines is associated with cognitive decline.

Salzman: “It is impossible to commit suicide with these drugs alone.”

Response: His precise meaning here is unclear. Was Salzman referencing overdose, polypharmacy, true underlying depression/impulsivity or something else? However, it is clear that Salzman’s intent was to distance benzodiazepines from suicide, which is belied by research. In 2016, Dodds analyzed 17 studies examined this issue and concluded that benzos appear to cause an overall increase in the risk of attempting or completing suicide. Additionally, the FDA has mandated labels to warn of increased suicide risk in the case of Z sleep drugs.

Many benzodiazepine users attest to experiencing extreme suicidal ideation as a direct result of the drugs and nothing else. We know of many from the community who have succumbed to it. Often, loved ones and benzodiazepine users speak consciously of the link between the drug and suicide, sometimes in their suicide notes.

Salzman, on the potential for these drugs to do harm: “I would like to emphasize that while there are problems with these drugs, these problems are minor in degree and are mostly limited to those who abuse drugs and alcohol.”

Response: The notion that these drugs cause problems only in those who abuse drugs and alcohol is contradicted by the more than 150 people—from both the Commonwealth and beyond—who submitted personal testimonies. They tell of lives that have been ruined after taking benzodiazepines as prescribed, and how this occurred even though they had no history of drug abuse or alcohol abuse.

Salzman, on withdrawal: “In a majority of patients who take low therapeutic doses, abrupt withdrawal is not as uncomfortable as going cold turkey from daily coffee. Try it and see for yourself.” He also wrote that “the most likely cause of protracted withdrawal is the individual sensitivity of the patient to these meds. This is most likely genetic (which can’t be measured in advance).”

Response: These claims are far from those included in the American Psychiatric Association’s own Benzodiazepine Task Force Report and Committee, which Salzman chaired in 1990 and was intricately involved with. The report does not dismiss problems with these drugs as “minor,” but instead speaks of “disconcerting withdrawal symptoms that include tinnitus, depression, and a sensation of seasickness.” His testimony connects withdrawal severity to speed of taper, dose and other medications but does not say that discontinuance problems can occur at recommended tapering levels or in relation to long-term use. On the other hand, his report does.

Testimony by Salzman’s long-term patient

A longtime patient of Dr. Salzman spoke next. He said that he had taken a benzodiazepine for 16 years, and he characterized it as “an extremely favorable experience.” He informed the committee that to get “the right med [or dosage], you need an iterative trial by error process” which he later compared to “the fine tuning of a radio.”

Response: It may be that Carl Salzman’s patient falls into the category of people who do not experience problems discontinuing benzodiazepines. However, his particular experience does not negate the research findings and many patient accounts which speak of harmful side effects and horrible problems associated with discontinuing these drugs. Thus, it does not constitute an argument, in any way, against the need for a law that would require prescribers to warn that discontinuation problems may occur.

Edward Silberman’s testimony

Edward Silberman told the committee, “I am here to testify on behalf of the many patients I’ve seen who have spent years needlessly crippled by anxiety disorders because they couldn’t find a doctor who was willing to prescribe benzodiazepines.” He said that benzos were the “most effective” known drugs for panic disorder and panic attacks. Silberman claimed that there was “nobody to speak up for them because big pharma abandoned them decades ago in favor of a big push on antidepressants” and “believe me, nobody is paid to speak up for these medicines ever.” He then claimed that the drugs were not addictive in one sense, because they do not cause euphoria, but do have an abuse potential among just polysubstance abusers only. Silberman concluded several times that addiction populations should not impact other psychiatric populations.

In regard to the first hearing, the doctor said that he “heard horrible stories about people who had long-term cognitive consequences” and that he was and is very concerned. He commented, “I don’t understand those stories because in over 40 years of practice I’ve never seen a single person who has had that. I’ve never heard a colleague discuss such a patient and I’ve never read in the literature about such a patient. So it’s an extremely rare thing if and when it happens.”

Response: First, from 1996 to 2013, US benzo prescriptions increased by 30%, which belies Silberman’s claim that people have struggled to find a doctor willing to prescribe a benzodiazepine. Second, for a study showing Xanax harming panic disorder patients see here. Third, for evidence that use can lead to long-term cognitive decline, see patient testimony from the hearing or the wealth of supporting research.

Hilary Connery’s testimony

The final person to testify against the bill was Hilary Connery, who argued that informed consent must be tailored to the individual seeking care, balancing their personal risks with anticipated benefits. “These decisions and discussions are the prescriber-patient collaborative and privilege. We are concerned that the proposed process overemphasizes the potential dangers of these medications and may inadvertently harm those who need acute and chronic care giving the impression of dangerousness not supported well by the evidence,” she said.

Response: As can be seen in both oral and written testimonies for this bill, doctors prescribing benzodiazepines regularly tell of how “safe and effective” they are while failing to accurately warn of risks. This bill would not be necessary if doctors fulfilled their duty to provide patients with informed consent.

The committee’s questioning of the psychiatrists

Several committee members inquired about whether there was a difference in the prescribing practices of psychiatrists and general practitioners, and this led to a sense that the problem lay with non-psychiatrists prescribing the drugs. Salzman replied that he “teaches non-psychiatrists all the time because [he] feels that it is his responsibility to do what this bill fixes which is to inform people how to use these drugs.” During the question-and-answer session, Salzman and others said they already saw many patients who were reluctant to take benzos because of what they had heard from others, and that this led many of the patients to then take other “drugs with worse side effects and that are not as effective as the benzodiazepines for anxiety.”

The committee’s vice-chair, Paul Ryan, noted that pharmaceutical companies had helped foster an opiate crisis with their misleading marketing of those drugs, and he then drew an analogy to the proposed benzodiazepine bill. “We have created this in a system where the drug companies are lying… We try to regulate the bad players. We need the good players on our side. I don’t see anything wrong with a pamphlet.”

Salzman replied that in regard to benzodiazepines, informed consent was already being delivered to patients, both in the form of warnings about drinking and driving and in the form of information about how to get off the drugs and possible side effects while doing so.

Response: The majority of those who spoke in favor of the bill addressed the question of who initially prescribed them a benzodiazepine, and they all said that their benzodiazepines had been prescribed by a psychiatrist. The misleading pharmaceutical marketing that created an opioid crisis is the same type of marketing that created a benzodiazepine crisis. As for informed consent, the reason we have sought to get this bill passed is because we patients were never warned about the harms that could ensue from taking these drugs or in withdrawing from them.

Supporting Testimony

Sixteen people testified in person in support of the bill. They were allies, those of us directly harmed from benzodiazepine prescriptions and our co-victim families.

These personal testimonies presented an entirely different understanding of the “safety and effectiveness” of these drugs.

Robert Whitaker

Robert Whitaker provided a historical overview of benzodiazepines. When introduced in the early 1960s, they were understood to be very “safe, effective and non-addictive,” but by the late 1970s that understanding had changed. Government agencies in the U.S. and the U.K. had concluded that these drugs were addictive and that their “effectiveness” disappeared after a few weeks, and thus should be limited to short-term use. He stated that the British Medical Journal editorialized at that time that perhaps the drugs should be banned. However, he said, the market for benzodiazepines was revitalized when Xanax was approved as a treatment for panic disorder. The published studies of Xanax, when it was tested for panic disorder, he told the committee, exemplified why the proposed bill was necessary.

The trial data showed that those given Xanax were doing better than the placebo group at four weeks. This was the result used to market the drug to the public. However, by the end of six weeks, there was no statistically significant difference between the two groups. Then, at eight weeks, the patients were withdrawn from their drug treatment (Xanax or placebo), and at the end of 14 weeks, the Xanax-withdrawn patients were doing much worse. Thirty-nine percent deteriorated significantly and had to start taking Xanax again; 35 percent experienced rebound panic and anxiety worse than they had experienced at baseline; and 35 percent experienced new debilitating symptoms, physical and emotional.

“The proposed bill is about informed consent,” he told the committee. “Medicine’s own literature says that there are problems with these drugs, and yet that literature was never communicated to the public, and that is what you are going to hear from the patients today.”

Video: https://www.youtube.com/watch?v=71emdGu_SN4

Richard Lewis

Richard Lewis, MEd, spoke about the hazards of using benzodiazepines in conjunction with opiate use. He estimated that 30-50 percent of opiate-related deaths in America also involve the taking of a benzodiazepine, and that 60 percent of opiate users take a benzodiazepine on a regular basis.

Numerous doctors and other professionals submitted written testimony in support of H.3594. Of particular note is that of neuroscientist Dr. Giovanucci. His cutting-edge research may elucidate neurobiology underlying the types of horrific reactions claimed by those testifying for the bill. For additional testimonies see here, here and here.

Personal accounts

The testimonies by those of us harmed by benzodiazepines and our loved ones was harrowing. Although the accounts may have differed in some personal details, they sounded recurrent themes. (See Michelle’s below.)

Some of us were prescribed benzodiazepines by psychiatrists for stress, insomnia, or after reacting to an uncomfortable life event, like a death of a loved one. Others spoke of being prescribed a benzo for a physical reason. Over time, a number of us said that our original target symptoms—anxiety, depression, etc.—became worse, and new physical or psychological problems developed. But almost without exception, our deterioration was not connected to our benzodiazepine use.

Many of us began to see more specialists. Increased anxiety and depression seem to be the most ubiquitous problems in general. Many of us told of then being prescribed a cocktail of other drugs—antidepressants, antipsychotics, higher doses of anxiolytics and so on. This led to more physical problems like chronic infections, memory lapses, muscle issues and many more. We were on paths to disability. Confused and unable to understand what was happening, we began to go for more medical tests and had procedures as invasive as surgeries.

At some point, for whichever reasons, we withdrew from the drugs. In our testimony, we spoke of prolonged syndromes which resemble severe alcohol withdrawal in some ways except that they were unmediated, unrelenting and no one believed us. We used the words “hell,” “torture” and “nightmare.” The symptoms we spoke about included: psychosis, akathisia, hypersensitivity to environmental stimuli like light, tinnitus, tachycardia, hallucinations, terror states, severe nausea, ataxia, seizures, incontinence, insomnia to the point of sleeping only a few hours a night, GI problems, cognition problems and personality changes. One man lifted his shirt to the hearing room to expose his distended and discolored stomach, explaining, “This is what benzo belly looks like.” Someone made the point that one symptom is tough, but together all the symptoms are a nightmare.

Video: https://www.youtube.com/watch?v=47lIXk63V1E

A common element to our stories was the utter disregard of our suffering by many service providers and their ignorance of such problems. In her written testimony, JC Curle stated that she had seen around 70 different types of specialists before an adroit psychologist connected her problems to her long-term benzodiazepine use. Aiyana from Holyoke, MA wrote about how the depression she struggled with from her teenage years until just under 30 was only connected to her benzo use when a technician overlooking her ECT application told her that the drugs both disqualified her for the procedure and caused depression. Another Massachusetts resident, who began her prescription in 1982, claimed that Xanax eventually did lead her to ECT. As for myself, I was looking into a vagus nerve implant for my benzo-induced depression after just several years of PRN use. We told of different routes to connecting the dots between our problems and drugs, but perhaps the most common and shocking was through doing our own simple research on the internet.

We spoke of lost years and lost chances. One woman said, “The possibilities of a self-determined life were wiped away with one scribble of a prescription.” We told of educational pursuits interrupted, businesses lost and entire families adversely affected. David Cope spoke of his pride at having been a young naval officer, and how he was now a disabled veteran at age 32, all because he followed his doctor’s orders in taking Ativan.

I wrote about how time with my ailing and dying mother was robbed. I was prescribed Klonopin for PTSD and sleep-related issues stemming from her being delusional and volatile during my childhood following brain surgery. After commitments, guardian ad litems, restraining orders, family estrangements, loss of our home and so on, my mother managed to remain medication non-compliant to the end of her life out of paranoia and surprisingly greatly improved with time. Sadly, while she was returning to herself, I was willingly walking down a psychiatric path to hell.

Hundreds of people sent in testimony from around the world. One was Stacy Fisk of Middlefield, MA, who was unable to make the commute to Boston because her ten-year-old daughter Ash had suffered 16 major seizures two days prior. Stacy now believes that following a doctor’s orders to start Ash, who was born with a seizure disorder, on benzodiazepine maintenance therapy at age four was the worse decision of her life. After she did, she saw emotional and cognitive declines in her daughter, as well as her seizures getting worse. Once she concluded that the Clorazepate was doing Ash more harm than good, her daughter’s neurologist tapered her too quickly and made her seizure activity even worse. Stacy wrote, “Ashley is the most loving, laid-back, beautiful little girl anyone could ever hope for. When she is in withdrawal, her depression and anger is so severe that I just cry and cry because I know she can’t help the way she feels. It truly is a nightmare.”

There were many other Massachusetts residents that were too ill to attend who also sent testimony. They were there in spirit. Hear Karen from Medford’s story as told by NPR.

Laura Delano and I tried to address the insidiousness of what we believe is happening. Laura, who was once a patient of one of the opposing doctors, said that it took her years to put together the pieces of the impact that the psychiatric drugs had on her, including the benzodiazepine she was prescribed for seven years. She elaborated, “When you are looking at your patient’s experiences, and when you as a patient are looking at your own experiences, through the filter of mental illness […] it makes it very easy to not see the negative effects of the drugs themselves.” In my testimony, I tried to counter claims similar to those made by Dr. Silberman, i.e. that he “has never seen these types of reactions in 40 years of practice.” I believe him when he says that he does not understand or recognize our stories. It is extraordinarily unlikely, however, that he has never had a patient (with conscious awareness or not) before him experiencing the effects of benzodiazepines that we all claimed.

Being “written off” seems par for the course for iatrogenic benzodiazepine harm. Gender politics no doubt comes into play; benzodiazepines are prescribed to women twice as many times as they are to men. This is a fact not lost on Geraldine Burns who believes benzodiazepine use affected her menstruation, leading her to have an unnecessary hysterectomy. In earlier days of psychiatry women who were deemed hysterical were hysterectomized in an attempt to deal with a “wandering womb.” When I began to convulse and hold rigid catatonic positions at a month after discontinuing a benzo in my mid-twenties, I myself was told that I was suffering from conversion disorder as a symptom of a larger “somatization disorder.”

I finished my testimony by saying that while I understood that it was asking a lot to concede that top experts could be incorrect, I asked them not to commit an “appeal to authority” fallacy. Chairwoman Garlick asked if any committee members had any questions. They did not. She stated, “It seems to me that what I may be hearing is that prescribers themselves may not understand the impact of this medication. Do you think that’s a fair statement?”

Will this bill become law?

Lawmaking is an arduous, messy business. This is especially true when it’s controversial. H. 3594 must be reported out of its initial Committee of Mental Health, Substance Use and Recovery by February 7th, 2018. A decision to pass, not pass or be sent to study again is largely made on majority rule with the opinions of the Chair weighing heavily. Without detailing the many steps ahead, at least this first hearing appeared fairly impactful.

The personal accounts, which included testimony by family members who have seen their loved ones lose their lives, were powerful, particularly in their cumulative effect. Such testimony could not be dismissed as merely a few “anecdotes,” and the final remark by the Committee Chairwoman, that perhaps the prescribers of benzodiazepines weren’t really fully aware of their negative effects, suggested that she had been at least impacted.

“I’m very encouraged by some of the questions that came from the committee members and I have a great deal of faith that the committee will take our concerns into consideration before making any decision on whether to move the bill forward,” said Geraldine Burns.

But as Representative McMurtry noted at the September 12th hearing, H. 3594 has been a true grassroots effort, which means we need help. There are several ways to stay connected and be made aware of future times and ways this legislation will need a show of public support. You can email me directly to be added to a mailing list at [email protected], or you can follow Facebook page “Massachusetts Bill H.3594: Informed Consent for Benzodiazepines & Z Drugs.” (Additionally, to file an FDA report, see here.)

Let’s finally do this.