On November 8, 2021, Sonja Styblo spoke to the Joint Committee on Mental Health Substance and Use and Recovery in Massachusetts legislature to lobby for the passage of Benzodiazepine Bills S. 1260 and H.2117: An Act Relative to Benzodiazepines and Non-benzodiazepine Hypnotics. Her opening message was straightforward: “We are here speaking truth to power today.”

Sonja Styblo
Sonja Styblo

Styblo has been urging the Massachusetts Legislature to pass this bill for years now. She is a licensed social worker—and now community organizer—who identifies as a “psychiatric survivor.” She suffered terribly from taking benzodiazepines for years, just as she was prescribed. The proposed legislation would require prescribers of benzodiazepines to provide patients with information regarding the risks of benzodiazepines, including long-term harms.

In this interview, Styblo discusses the history of the Benzodiazepine Bill, its current status, the purpose of the legislation, and why she and others have so vigorously pursued this legislation.

 

Gianna D’Ambrozio and Timothy McCarthy: Could you introduce yourself?

Sonja Styblo: I’m an LMSW who graduated in 2019 in social work. I primarily identify with being a psychiatric survivor. I like that term. And professionally, what I’m doing now is I started a job on the other side of the country counseling, mostly refugees, in psychotherapy.

 

D’Ambrozio/McCarthy: What does that term “psychiatric survivor” mean to you personally?

Styblo: My understanding is it came about in the 1970s. I like it because it packs a punch for people who aren’t familiar with psychiatry. It tells of how people can be harmed by these systems. I think it’s attention-grabbing. It’s part of a movement and gives meaning to your life and to your suffering. And it has the term “survivor,” which is always good.

 

D’Ambrozio/McCarthy: What is the benzo bill? How did it come about?

Styblo: It wasn’t my baby at all. It was [the baby] of a woman who’s been just a godsend working on this issue.

It’s such a depressing issue. Most people usually might do a little advocacy, but she is an exception—she has probably been at this for decades. Her name is Geraldine Burns. And she has been sort of a “grandmother” connecting other people with other people—like Malcolm Gladwell style—creating a kind of movement here, or just providing connections to other people and information sharing.

Her son [Garrett Burns] works at the Massachusetts State House. This has been a prominent theme in their family’s life … They have probably talked to thousands of people. And they’ve seen all of the fallout from this problem. Her son is a lawyer who wrote the benzo bill.

When I started to get a little bit better and to get back in the world, I found some local Facebook groups … I had very slight training, macro training, in my social work program, and I said, “Okay, this is something I could latch my wagon to, and maybe help a little bit.”

 

D’Ambrozio/McCarthy: Can you tell us a bit about the history of the bill, and a quick review of what the bill is?

Styblo: Like a lot of bills, it’s not just pertaining to one issue, and it has wording that we hope will be palatable to other legislatures, so other [state] legislatures will pick it up. There’s a lot of debate about the concern of addiction with these drugs, as well as harm from long-term use. We really care about the long-term-use part, and the risks associated with that. These drugs are so often prescribed long-term. We want to codify a formal and informed consent process whereby a practitioner has to hand someone a paper with some kind of verbiage warning about long-term risks, and the patients would have to sign it. It would also be nice to put something on the label [about long-term risks].

 

D’Ambrozio/McCarthy: So you’re really focusing on the long-term effects of using these drugs. Do you deliberately separate yourself from folks who have become physically and psychologically addicted to these drugs? And how does that relationship work?

Styblo: Probably every day, at least one of us sends somebody information from the FDA about the difference between dependence addiction and harm from long-term use. Of course, addiction issues have their place. But we really want to put the onus on the medical establishment, not on the patient, and sadly, “addiction” sometimes puts it on the patient. And that’s a whole other problem, we don’t need another uphill battle.

Psychiatrists, really powerful old-guard guys in Boston, have testified against the bill. And that was part of their strategy, to basically say that “good patients” shouldn’t have to suffer because of people who have abused their medications. But it’s just very wrong to blame people who’ve taken these drugs as prescribed.

 

D’Ambrozio/McCarthy: A lot of people who become addicted start by taking the drugs as prescribed, but we won’t go down that road. Who testified in opposition?

Styblo: A number of really high up psychiatrists … people in prominent positions who are well-known names. One, for instance, was the chief of psychiatry at Mass General Hospital.

 

D’Ambrozio/McCarthy: This is something we’re trying to understand, the opposition to this bill. You explained that the psychiatrists make the argument that “good patients” should not suffer because of people who misuse the drugs. In what way are these “good patients” suffering because of the proposed bill? What is negative about providing informed consent regarding the prescribing of these drugs?

Styblo: They’re really empty arguments. One was “it would be stigmatizing.” One of the first versions of the bill states that we wanted a warning [of potential harms] printed on orange paper. They made such a lame argument that patients would feel stigmatized if they got informed consent information on orange paper from their pharmacist.

There are many theories about this resistance. Most people will say it’s because of pharmaceutical money. But one of the psychiatrists said in response, “benzodiazepines don’t really make that much money anymore.” Frankly, I don’t know, and I don’t have the journalistic time to investigate that.

My own personal theory is I think the psychiatrists don’t want to look like fools. It’s bad for their reputation that they’ve gotten this issue so wrong for years. There are probably nefarious forces in the background, and there certainly was such in the 1970s, where there was a shady pharmaceutical cover-up and stuff like that. But actual people who show up to testify against this—and Robert Whitaker has that in his second book on this—have a guild interest, basically, [and] they don’t want to look like imbeciles.

 

D’Ambrozio/McCarthy: This is clearly a huge public health problem, and it’s not being addressed as it should be. And you and others have so vigorously pushed this benzo bill legislation… How do you think that it  will provide a solution to these problems that we’re facing? Obviously, it’s not going to provide a solution to everything. But in your opinion, what do you think it will do? What’s the best outcome of this bill?

Styblo: Frankly, I think it allows people the opportunity to consider that long-term use might not be the best decision. The bill is not going to prevent [long-term] use. But it will give people pause. And maybe some can do their own research.

Some of the prescribers, who may have been prescribing benzodiazepines for decades, are going to have to look into the research. This is another reason for the resistance, and why all these powerful men have testified against the bill. This bill would require a new way of doing things . . . it would require shared decision-making. There would no longer be this unequal footing, and that’s an affront to people in positions of authority.

 

D’Ambrozio/McCarthy: So this legislation wouldn’t prevent the filling of prescriptions. Instead, it seeks to provide consumers with more complete information, and thus they can make informed decisions about the drugs with their providers in a shared decision-making manner. What’s the current status of the bill? What are the next steps to getting it enacted?

Styblo: This is our fourth filing. On our third, we had the best traction in the legislature that we have had so far. It  was reported out of committee, and then the pandemic struck. My conjecture is that the pandemic really sidelined legislative initiatives at the State House, and other things were prioritized, like public safety measures related to walking around in public spaces. And ours is a difficult-to-understand issue.

So this is our fourth filing. Massachusetts has two-year sessions, so maybe we’re on years six to eight since it was first filed. And a big date just passed in February [2022]: the Committee on Mental Health and Substance Use Recovery had to rule if it was going to go to study the issue more, and if not, it could be shelved and sort of die, that is not get out of committee and move on for debate. At this stage, we have no idea what the committee ruled … I think we’ll find out in the next couple of months what they decided.

 

D’Ambrozio/McCarthy: What an arduous process. Is there political alignment either in favor of or in opposition to the bill? Do you see it being partisan at all? Democrats or Republicans, conservatives or liberal folks being more drawn in favor of the bill, or in opposition to it?

Styblo: Personally, I haven’t seen it one way or the other. We’ve had Democratic and Republican support in terms of people who have sponsored it.

 

D’Ambrozio/McCarthy: Have you gotten public support?

Styblo: Here’s the deal. I’m not like some Ralph Nader … I’m doing this while simultaneously trying to rebuild my life. We are truly citizen activists, and we do what we can. Most of us are sick [from the benzodiazepines]. If I were a millionaire, I would spend every waking second of my time trying to get this out there. You can only do so much and try to keep your psyche sane and try to rebuild your life … It’s not the focus of my everyday life. I’m just trying to do what little I can with my little MSW education.

We’ve had some pretty good publicity. [My colleague] consulted with Lisa Ling on her CNN show (“This is Life with Lisa Ling”) a few years ago and that was kind of a big deal. And they did a really good job. And [CNN] actually got this issue pretty right.

We definitely get crazy hate mail from members of the public who say “don’t take [benzos] away; I need it for my sleep” or something like that. People get really offended when you threaten their “reality.”

 

D’Ambrozio/McCarthy: Are you also receiving support from doctors and psychiatrists?

Styblo: We are, yes. At this last hearing we had some fantastic people testify. All the way from “older” guys who can see through the nonsense and who really understand this issue and understand dependence and how the brain adapts, and to newer psychiatrists who are thinking this is a radically new issue that they’re looking at.

That was a big change from the first hearing. At the first hearing, it was very hard to find professionals to testify for us. Since I’ve been looking at this issue these past years there have been some really positive changes.

 

D’Ambrozio/McCarthy: What can the readers of Mad in America do to get involved?

Styblo: Thank you for asking that question. It’s doing simple things, like just calling your legislator. I have for years have been begging people who’ve been harmed to make one phone call. And it’s very hard to do. It’s a very hard population to mobilize. And beyond that, just helping to get the issue out of the closet … That’s definitely happening more and more, so just helping to break that taboo of discussing it.

We really need to have better press and I keep going back to the fact it’s such a complicated issue to explain. There are some documentaries coming out … I think that will be positive. I think word of mouth will help too.

Anecdotally, I’ve heard during the last couple of years about people coming into hospitals and the first thing they’ll say is, “I don’t want to use drugs.” So people are talking more about it.

 

D’Ambrozio/McCarthy: How can we as mental health practitioners, social workers, mental health counselors, and psychologists support this effort?

Styblo: For me, to keep my job, there’s obviously a hierarchy and you kind of have to defer to the medical authority. A lot of the time, I think, you can plant seeds, but you have to be very careful for your own sake. If you do counseling, you could ask people questions like, “oh, so since you’ve been on your cocktail, have things gotten worse or have they gotten better?” And just like any other counseling, you have to have people arrive at decisions on their own. All you can do is plant the seeds.

 

D’Ambrozio/McCarthy: Any last words for us?

Styblo: More than most other people, I understand how discouraging this work can be. I can tell you a million stories that make it depressing … I’m sort of doing the bare minimum to keep my sanity half the time. Yet, these collective grassroots efforts have still accomplished a lot. For instance, on an off chance, I reached out to my senator and actually took advantage of constituent hours to speak to him over coffee. He ended up filing a Senate version of the bill. Beautiful things happen, too. It’s about trying.

***

MIA Reports are supported, in part, by a grant from the Open Society Foundations.

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Gianna D'Ambrozio
Gianna D'Ambrozio, LMSW (she/her) is a Ph.D. student in the Counseling Psychology program at the University of Massachusetts Boston. She is a Licensed Master Social Worker in New York State, receiving her MSW degree from New York University in 2021. Currently, Gianna is conducting research on the risks of psychotropic polypharmacy in children and alternative therapeutic interventions.
Timothy McCarthy
Tim McCarthy is a masters student in Mental Health Counseling at the University of Massachusetts Boston. He is the Executive Director of Craig’s Doors, a non-profit network of homeless shelters. His interests include alternative approaches to substance use disorder, the relationship between homelessness and mental illness, and the medicalization of the human experience.

5 COMMENTS

  1. The article: ” But one of the psychiatrists said in response, “benzodiazepines don’t really make that much money anymore.”

    Benzos are not pharma’s big sellers, but the problems that Benzos eventually build the gateway to poly prescribing- additional drugs ostensibly to address the illness that the Benzo RX, itself, has caused.

    I agree that Benzos, themselves, do not make a lot of money. However, the benzo-altered patient must make ongoing payments to the prescribing psychiatrist to prevent the devastatingly painful withdrawal from the prescribed Benzo.

    The parallel to organized crime/drug dealing is unmistakable .
    Related: An actual sudden Benzo-ban would pose an immediate danger to those in withdrawal as well as those who are unaware of their Benzo-dependent status.

    In other words, 1) patients must be given adequate time to plan their medication escapes. 2) Will the medical camp let all of these paying customers leave without an accusation that patients are not competent to make their own decisions and so must be court-ordered to take whatever said licensed prescriber demands?
    This is alarming.

  2. I have read the interview, we have been affected first hand by a reckless prescribing manner. My son was 18 when he first started seeing a sleep doctor. He was over 18 so Hippa very much in play prevented me from the necessary information I needed. My son developed a sleep disorder???? no tests ever done. could not fall asleep or stay a sleep. upon his first visit to his sleep doctor. The following was given.
    Trazodone HCL 1/2 to one pill at bedtime 30 days. 10 days later Ambien 10mg, another rx for Trazodone same mg 30 day, Vistaril 50 1-2 tabs 60 day, Seroquel 50 mg 1-2 tabs.60 days. 30 days later Restoril 30 mg 1 tab, Neurontin 300 mg 30day, Seroquel 200 30 day. A note stating she ” will initiate cocktail of SSRI, GABA stimulation to induce and maintain sleep” 5 days later Halcion 25 1 tab. Two weeks later. Gabapentin 600mg, Halcion 25 1 tab 30 day. Fluvoxamine Maleate 100 1 tab 30day. Restoril 30 mg 1 tab 30 day. Do the math for the prior two months, shocking amounts of drugs. We had no idea what she was doing, however we knew something was wrong, we had the extreme up-downs, sick and throwing up everyday. nausea every day. with no explanation of what the hell was going on.
    This method went on for 2 1/2 years. It took getting his records the day after he died to explain what was going on. Once I had a very clear picture I reached out to the local DEA office because it was painfully clear what she was doing.
    4 months prior he had some kind of reaction to all the meds and was put in the hospital he had total renal failure, his CK level was off the chart. Klonopin was added as well.
    He returned to the sleep doctor about a week or so after his release. She decides she will try something new. she prescribes Xyrem and edluar. The pharmacist refused to fill it because of a deadly inter action. So the doctor re-sent the rx changing to Ambien. He still refused to fill the Xyrem. So the doctor called the pharmaceutical company and had the Rx sent directly to my son. They sent a note to her warning her of all the meds he was on. he still took it. Got very ill but did not die. He tried to withdraw off all the meds with the MD. He was having a bad time with Klonopin. Until one day he had enough and took his life. He had just turned 22. The MD informed me that its so hard to get off Klonopin. its like your brain is on fire. This is just one drug what about all the rest. The doctor got away with wrongful death. The doctors need to held accountable. I did go after her with the medical malpractice board. They would never revel what they did, so I posted the story on her web site and she is no longer treating in my state. I am in the process of righting a book that will include his records with the doctors signature on all the orders. Because people don’t always believe until they see the written proof, which I have and own. My records were used by the board. My story is an example of easy this can happen and how ruthless some doctors can be. To see the mass amounts of drugs is absolutely sick making. Let me ask this question? This law if passed will include a label with a cautionary statement explaining the risks associated with long term use. What about the doctors who are prescribing all this crap for long term use???? like in our case, I found three rx for triazolam in his file, all written with different rx numbers. A note for all three printed and given to patient. What would have stopped him from pharmacy hoping and having them all filed? he would have had 45 pills. 23 days later she did it again this time with 3 months of refills. I took this over to the pharmacy that filled it and asked is this correct. you filled three different rx’s for the same drug at the same time. I was told yes. No one is held accountable. How will this law safe Guard this crap from happening? She got away with it. This doctor had 7 offices??? she advertised herself as and anesthesiologist, oncologist, pain-med, psychiatrist, she was only licensed in Sleep, pulmonologist. My story is heart breaking and sick making at the same time. I had the assurance of those who looked at his case and I was told the same thing. my son was given enough meds to kill and elephant. No one took the case. The shift is now to educate people and warn about these things. We are a pill happy society. My story plays out everyday over and over. If you want change the prescribing doctors need to held accountable.!!! I promise if a doctor would have told my son that getting off klonopin was like your brain is on fire. He might not have taken it. This is my sobering story.

    • OMG, what a horrific experience!!! This sounds like malpractice even by their own standards. The doctor was warned by a pharmacist and the drug company but continued anyway. I’m SO sorry you have to go through all this! And I hope you find some sense of peace and justice in the future.

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