2021-11-08 00:00:00 - Joint Committee on Mental Health, Substance Use and Recovery
2021-11-08 00:00:00 - Joint Committee on Mental Health, Substance Use and Recovery
(Part 2 of 2)
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uh Good afternoon everyone. Okay we're going to resume this hearing with testimony15 on S 1260 age 21 17. The first panel we have21 consists of dr kristi huff from the benzodiazepine information coalition joseph witt during dr rakesh john Alexis Ritvo from the University of Colorado School of Medicine, Patricia Halligan, Nicole Amberson. Uh dr Michael Bowen and James Davies. Just to give you time to prepare yourselves first up dr christoph Mr chair. Just I'm so sorry. We do have Suzanne Meador back on the phone. She knows to you star six to a nude herself when you're ready for her. I'm so sorry. Okay why don't we hear from Mr peter Now that way we can just start testimony a fresh on this new set of bills. I so appreciate your patience. Mhm. It Miss Meadows on the floor is yours.
[SUSANNE MEADOWS (CONCERNED CITIZEN):] Thank you so much. My name is Susanne Meadows I have an 18 year old son who suffers from um substance abuse disorder as well87 as other um mental health issues. I made the hard decision to have him suctioned on September 1st of this year and A little bit after his 18th birthday. And he was sent to Masback and I can tell you that our experience is that it's a dangerous, traumatizing filthy place. And that little was given to him in the way if it's anything of real help for his disease. Um He he was transported there. He sent 6-7 hours and transport from Lynn to Masback and Pembroke. I'm sorry and Plymouth and he was locked in the van and for a couple of hours alone when he did finally arrived, he was placed in solitary confinement in a cell for four days and he was denied phone privileges. He was also denied his very much needed um psych medications. Uh when, when he finally was able to call me on the fifth day, I sprang into action and I made numerous phone calls.I spoke to the head of nursing there, I spoke to the superintendent of the facility. I spoke to his caseworker and it still took three more days before he was given his psych meds, they put my son that real harm.
Um the medications that he takes aren't um, they're not shape176 to stop abruptly. Um That was really just the beginning of the problem181 though. Um It took him a week to get any meds.186 Um and and uh it was, it was just a horrible traumatizing experience for him. When I spoke to staff at the facility and asked whether he would be safe there, I was told he would be as safe as he made himself. In other words, he would he would not be safe. Um His caseworker. Uh Initially when I spoke to her, she assured me that she would keep a close eye on him given his age and um his situation and that she would meet with him every day. Well, I can tell you that did not happen. In fact, I was225 reaching out to her desperately to try to arrange for him to leave230 the facility and go to a privately funded rehab. Um that he very much wanted to go to and and I couldn't get in touch with her. She just doesn't answer her phone. She leaves the facility early in the day. Um Or she's not she's not reachable from the outside or from the inside. Okay My son um my son had access to illegal drugs um while he was in the facility um he was given the boxed warning that um no
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matter if you wouldn't mind just wrapping up the testimony, we appreciate that.
[MEADOWS:] Yeah. I mean I guess just in in short it was a very dangerous, traumatizing experience for both me and my son and as hard as I tried from the outside to help him, I really couldn't once he was in there he was not safe and he was not being given the treatment that he so desperately needed and then I thought he would get there when I sent him. He was treated like a criminal. And and um it's an experience that neither of us will soon forget and I implore you to do not repeat this crime against you know these folks who desperately need our help.
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Thank you for your testimony and I'm so sorry for what happened to you and your son. Are there any questions for Miss major Okay. Hearing none. Thank you for your testimony. And we're now going to come back to s 12 60 age 21 17. The first panel, the first person up dr Christine Hoff.
[CHRISTY HUFF (BENZODIAZEPINE INFORMATION COALITION):] [SB1260] [HB2117] So I'm here to testify in support of the informed consent bill for benzodiazepines. I'm a cardiologist and the director of Benzodiazepine Information Coalition. I'm also a survivor of taking benzodiazepines as prescribed at 31 months. Benzo free. I still suffer symptoms of protracted withdrawal and I'll provide a written summary of that experience. But today I'll be sharing some insights from my advocacy work. I've had the privilege of talking with thousands of individuals harmed by these drugs. The majority are good patients who took their medication as prescribed yet still experience adverse effects and prolonged and difficult withdrawals. We know between 15 to 44% of long term Benzo users experience moderate to severe withdrawal symptoms upon discontinuation and at least 10-15% can experience protracted symptoms lasting months to years, possibly even permanent.
390 Not everyone experiences a difficult withdrawal, but for those of us who do the impacts are devastating. After my own experience, I realized that I had received very little instruction on the risk of these drugs during my training. In fact, I myself, a pphysician had learned had to learn to taper from other patients and support groups. In september of 2020 the USFDA updated its Benzodiazepine boxed warning to include the serious413 risk of physical dependence and withdrawal. Prior to that warning. They did an extensive review on benzodiazepines and they documented numerous concerns that benzo safety advocates have been voicing for years. I'll review a few of those here. First. The benzo abuse and addiction primarily occur in the context of policy substance abuse and not in the as prescribed patient population. Next that adverse events can and do occur with prescribed therapeutic use that440 withdraw can last months or even years. The new warnings include the potential of the protracted withdrawal syndrome lasting 12 months or more. And lastly that position, education about Benzodiazepines safety is lacking.
The FDA is correct in this assessment. I have seen this in advocacy as well. This is leading to improper de prescribing where patients are being cut off too rapidly resulting in severe withdrawal symptoms and under recognition of adverse effects and long term risks which leads to misdiagnosis and unnecessary medical testing and treatment. This lack of education is translating into inadequate informed consent for patients. In the 2018 online survey, only 6% of Benzo users said they had been clearly warned that these drugs should be taken short term and they or that they were difficult to withdraw from. I feel strongly about the need for informed consent surrounding these drugs. So I authored a written consent form for use in clinical practice which includes the information I wish I had been told499 prior to starting a benzodiazepine. Today. I urge you to listen to the voices of those with lived experience patients are continuing to be harmed by the physician knowledge gaps surrounding these drugs and the resulting lack of informed consent. If passed. I believe this bill has the potential to save many lives. Thank you.
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Thank you. Dr huff. Do we have any actually Before we get to questions. We'll take the questions as a panel. Uh we will see if the next Panelist is available to testify joseph witt during. Hello, are you able to hear me? Yes. Okay.
[JOSEF WITT (BENZODIAZEPINE INFORMATION COALITION):] [SB1260] [HB2117] So dear members of the Joint Committee on Mental Health, substance use and recovery. I'm Dr. Josef Witt Doerring I sit on the medical advisory board of BIC. I'm board’s certified psychiatrist and I completed fellowship training and psychiatric drug development at Drexel and Janssen Research and development. After my fellowship, I worked at the FDA as a medical officer in the division of psychiatry where I reviewed emergent drug safety problems and proposed strategies to mitigate risk. Since then I've been working in private practice psychiatry And currently 75% of my practice involves treating patients that deal with protracted Benzodiazepine575 withdrawal. I'm here in support of the bill today and the reason is simple.
The legislation would help reduce the immense potential for harm that these commonly used medications can cause protracted withdrawal is a real and debilitating adverse reaction. Since 2020, the FDA has now mandated that pharmaceutical companies um who manufacture benzodiazepines update their labels to warn clinicians and patients about the serious risk of protracted withdrawal. Despite the updates to the current labeling. I support additional regulation at the state level. Although labelling helps,614 it really is an imperfect tool for ensuring that patients are warned about these serious risks. And the key reason is that physicians and pharmacists well frequently forego discussions of the risks due to visit time restraints. And this is especially true in underserved areas where clinicians may see up to four patients in an hour.
Ultimately, the patient will receive a medication with a folded label in the bag. Most patients may not read these dense small font packets of information and they will simply believe that if there was something serious that doctor or pharmacist would have told them about it. A652 state regulation that includes a proactive consenting process would ensure that all patients are aware of the serious risks of these commonly prescribed medications regardless of how long their doctors and pharmacists have to spend with them. And finally, I don't believe this regulation would inhibit the long term use670 of this medication for the patients that actually do needed. Rather, it would ensure that patients have the best available information and are prepared to have a collaborative discussion with their providers about the risks and benefits of these medications. Thank you for your time.
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Thank you dR690 with during any uh I'm sorry, I keep forgetting. This is a panel.702 We'll turn to questions at the end of Next up Dr Patricia Halligan. Dr Halligan, you're muted, still muted. Dr Halligan. All right, can you hear me now? All right, Sorry. I'm just used to zoom.
[PATRICIA HALLIGAN (BENZODIAZEPINE INFORMATION COALITION):] [SB1260] [HB2117] My name is Patricia Halligan. Uh I'm a practicing addiction psychiatrist for the past 24 years. Georgetown Med School Cornell for psychiatry residency and Medical University of south Carolina for an Addiction Psychiatry Fellowship. And I've been741 on the front lines of two epidemics over the past two decades and one is the Opioid epidemic. The other is the Benzodiazepine epidemic. I'm here to support the hundreds of patients who have knocked on my door uh who have taken long term benzodiazepines as prescribed and developed a worsening of depression, insomnia and anxiety, new onset memory problems and an inability to function at work, school and home. They are not suffering addiction. They have developed a physiologic dependence on benzodiazepines, which change their central nervous system. Benzos are not primary drugs of misuse. The prevalence of Benzo misuse is only 2.2% worldwide. What does the literature tell us about Benzos? The literature tells us there is no evidence that long term use of Benzodiazepines is associated with benefits.
The Journal of Clinical Medicine 2019 describes the following problems with long term Benzo use for all ages. Rebound anxiety, depression, decreased805 quality of life, 60% increase in motor vehicle accidents over sedation, impaired cognition and increased risk of suicide. Xanax is implicated in one third of all suicides. Xanax was prescribed 49 million times last year in America. It is the number two psychiatric medication most commonly prescribed in America. There is no efficacy for benzodiazepines in treating PTSD. In randomized clinical controlled trials. Benzos actually increased the likelihood of PTSD developing when given immediately following a trauma and increase the risk of suicide and veterans. A meta analysis of 19 studies over 13 years shows that cognitive impairment may permit persist in ex users for six months or more. Benzos may850 increase the risk of dementia. The American Geriatrics Society says avoid Benzos and Z drugs in older adults people 65 older. However, 1/3 of older adults in North America are prescribed either a Benzo or a Z drug. The percent of benzo prescriptions is increasing. The doses are increasing. One in three people On long term benzodiazepines will have difficulty discontinuing.
Even if the benzos are tapered very slowly. 15 to 20% of long term daily users will go on to develop a severe severe debilitating prolonged withdrawal syndrome that lasts on average nine months. I can last for years, patients can experience insomnia, skin crawling out to these, a mental fogginess depression, severe anxiety, tremors, muscle spasms and suicidal thinking. Delirium psychosis and death. While attempting to withdraw. They're suffering is the worst I've ever seen every day is a living hell for these patients. It's I a transgenic suffering. It doesn't have to happen. I took the Hippocratic oath when I became a physician Above all do no harm patients deserve informed consent when perspective Benzodiazepine, or Z drug. I do not prescribe them unless I am treating919 alcohol withdrawal or doing a long slow in 24 years. Other than those two conditions I've never prescribed benzodiazepine or a Z drug. Uh They925 need to know there's a one in three risk of severe withdrawal that typically lasts on average nine months plus and may persist for years. Thank you very much for listening.
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Thank you. Dr Halligan. Next up on the panel, we have Nicole Amberson. Uh Hi everybody. Can you hear me? And Okay, so
[NICOLE LAMBERSON (BENZODIAZEPINE INFORMATION COALITION):] [SB1260] [HB2117] I'm Nicole Lamberson and I'm a physician assistant that also serves on the medical advisory board of Benzodiazepine Information Coalition. I'm also a survivor of taking benzodiazepines and non benzodiazepines as prescribed. These medications nearly cost me my life their adverse effects and withdrawal. So severe suicide seemed a viable option. My struggle is not over nine years post cessation. I still suffer protracted syndrome debilitating enough that I'm unable to resume full time work. The irony is not lost on me that I was initially given these drugs for mild stress at work. Also, women are overwhelmingly the recipients of these drugs. I'm 43 now and this occurred during my childbearing years preventing me from motherhood. One important point to consider and understand is that the labelling of what happens when you try to stop these drugs as withdrawal does not do it justice.
This isn't just like stopping cigarettes and for the majority it is not an addiction. This problem occurs by following doctor's orders. The body and brain adapt and change in the drugs, chronic presence and physical dependence and tolerance are thus expected outcomes of prescription beyond a couple of weeks thousands I've met who developed this involuntary physical dependence, want nothing more than to be rid of these drugs forever. But it's not so simple. You can only peel away small percentages per month in tune with bodies painful objections, discontinuing benzodiazepines opened a portal to hell for me. I was mostly bed bound. I could not manage my daily life or leave the house. It has been torture. This1057 problem can be investigated with four steps. One, no new patients should be allowed long term prescriptions unless a rare severe exception. Two, prescriptions for new patients should1065 be kept short term.
Three, the patients already on long term Benzos need to be grandfathered in and allowed to remain on the drugs or taper off at a rate and speed that they not their doctor deemed tolerable and four any patient who receives a prescription gets fully informed consent. In the 60 some years since these drugs have been available, medicine has proven that it cannot self regulate with this issue and so something has to be done to protect vulnerable patients.1097 Anyone with a belief in the fundamentals of medical ethics should hold no objections to patients receiving fully informed consent as these drugs have well documented potential to cause harm. And patients deserve to know that. Please take heed of the testimony of those who are experts by experience. This drug classes being used inappropriately long term and is causing preventable suffering injury and death and the socio economic costs of this problem are immense. Never mind the other immeasurable costs to victims and their families. I'm willing to take questions if there are any. Thank you so much. T
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hank you. Mr Chairman. We will take questions once the panel is complete. Um, next up on the panel, dr Michael Bowen. Um I've got it now.
[MICHAEL BOHAN (BENZODIAZEPINE INFORMATION COALITION):] [SB1260] [HB2117] Good afternoon. I'm Michael Bohan, I'm a physician, I'm an addiction medicine specialist. I'm working in Virginia. Um my interest in addiction started in Chelsea Naval Hospital. It's no longer their guests to tell Chelsea Massachusetts um by the Tobin Bridge anyway, uh, started working in alcoholism treatment there helped to introduce alcoholism treatment to the Navy, um continued in the Navy. And my last tour in the Navy was at Naval Hospital Portsmouth. Whereas chief of medicine, I ran into many number of patients who were dependent upon benzodiazepines. They would, they would be coming to my office looking for increase in dose that their doctor wasn't going to give them as such. But anyway, I started a clinic then and started using long term detox programs used to SHOW NON-ESSENTIAL DIALOGUE
using diocese Chan Okay.
And I'd like to tell you what I that I think is one of the most important things. And maybe there's1211 a little class we're going to have now and that is um and then we'll start off with this phrase, all addicting drugs cause the symptoms that are designed to relieve in time. That is all addicting drug such as opiates and Senator economic drugs, alcohol. They will cause the symptoms are designed to relieve in time. An example, you prescribe opiates for pain and you take it for a while, tolerance sets in. You have to increase the dose you stock the opiates what you got more pain. Benzodiazepines taking for anxiety, gradually increase the dose over time, stop it and more more and more anxiety. The anxiety of course with the Benzos is long lasting and not like the withdrawal from alcohol and the opiates. Opiates are shorter withdrawal, but not1262 with Benzos, a few patients seem to get off okay, but most dont both seem to have a protracted uh and that's where we have to step in. So what's going on here is a uh I'll call it uncalled for an unexpected prolonged misery and this is something we see over and over again. I'll just give you some examples.
I walk onto the psychiatric unit. I heard this wailing going on, you know, and that wail I've heard over and over again from Benzo patients in high dose that has been stopped. No one wants to go see that patients, the nurses.don’t want to go to see the patient. I remember walking into the unit and I heard the wailing like I said to the patients doctor, I'll take that patient and so he said you will. So because I knew what the problem was and we knew1308 how to treat them. But that's the things like1310 this are going on all too much. Uh So getting back to the class again all addicting close close the symptoms are designed relief. So these these this is a dual effect of addictive drugs. This is a paradox. You know this is just the truth contained in the opposite and people have a hard time grasping it. I think most pharmacists and doctors don't seem to get this1353 idea of the dual effect of addicting drugs. Okay well anyway thank you very much.
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Thank you. Dr Bowen appreciate your testimony1361 and last up on the panel. James Davies Mr. Davies. Mhm. Yes Miss Hardman Mr. Davies cannot make it today. Thank you. Thank you to spend in written testimony. Thank you. Thank you so much. So that concludes this panel. Do we have any questions from committee members for any of the panelists? Okay, hearing none. Uh We will move on. I do see that Senator Keenan has rejoined us. Senator. Would you like to testify? Yes. Uh Thank you.
[SEN KEENAN:] [SB1293] [SB1294] Mr Thank you Chairman Madaro thank you. Chair Cyr for the opportunity to testify. I apologize I had to step out, go to a meeting. I'm glad I made it back in time and I appreciate your perseverance with the hearing I want to testify if I may on two bills. The first would be a Senate bill 1293 which is An Act allowing increased data access in opiate overdose deaths. This is a refile that was reported reported out favorably last session. You may recall that in 2015 we passed what came to be known as Chapter 55. And that requires the Secretary of Health and human services to produce reports of prescribing and treatment relative to opiate overdoses. I know there's been a topic of much of the conversation certainly earlier today. Um and one of the things in order for the secretary to produce this report, DPH gathers data from the prescription drug monitoring program, MassPAT, which have testified about this session before the Joint Committee On public health. They also got information from the opiate claims database, the criminal offender record information database, court activity record information.
I think they're up somewhere about 11 or 12 different databases that they utilize in order to inform us on policy. And just to give you a quick example of how what's been done is translated into policy. Just earlier today, I was on a call with the commissioner of the department of corrections, talking about medication assisted treatment within our correctional system And the medication assisted1482 treatment program was introduced as a result of a finding from the Chapter 55 reports to show that people coming out of our correctional facilities were at a much higher risk of dying of a drug overdose. And so while parents, thought that getting their child or a spouse start getting a loved one into a correctional facility meant at least that they would have access to treatment and that they would be safe. That was true. But little did they know and little did we know until this data was used that we were putting people at greater risk of dying of an overdose death. And so the Chapter 55 data is very important.
And what we're looking to do is to1524 add an additional uh database to their data collection efforts. And this would be information from the Department of Revenues. The agencies that use these reports, uh The agency that develops these reports1534 have expressed a desire to have this1536 data and included. And so Senate Bill 1293 just does that quite simply it amends Chapter 55 of the Act of 2015 to include income data from the DOER in these1548 reports which are called Public Health Data Warehouse or PHD. Reports. Chapter 55 is a national model for data collection and analysis Massachusetts has contacted regularly by other states, finding out how we did it, what it is we do and how we've been able to utilize that. they are anxious to copy what we've done. So it's a national model and adding this data at the Department of Revenue data would enhance our ability to collect the data and to translate it, Put it into useful policy. So I respect respectfully request a favor report out of committee again this session.
Um, the next bill is uh Senate bill 1294 which is an An Act strengthening prescription drug safety and drug stewardship. And I know earlier today there was some discussion about notifying physicians about when somebody has suffered an overdose and while this epidemic has changed and the pathway to addiction has changed somewhat during the course of this epidemic. We can't deny that prescribed medications still lead to dependency which ultimately leads to addiction. And so what this bill does Would be to basically make permanent this program that we now have in place, which is a drug stewardship program. Um, it's incredibly important as1630 we saw in the 2020 Sacha Lawsuit. Opioid drug manufacturers have basically in many cases played and uh outside role in creating the opioid epidemic. And while they have acknowledged it, some of them have to some degree, others have, as a result of litigation has been forced acknowledgement.
Very few of them would step up to address the number of prescribed medications that were out there in medicine chefs and in Holmes subject to diversion, which would lead again dependency and addiction. So the program that we put in place the past here in Massachusetts was for a drug stewardship program where drug take that program to be funded by the pharmaceutical companies. It's now facilitated by two vendors. And it is, they say it's it's financed in part by the opioid manufacturers and it's a way of holding them accountable.1680 They manufacture the medication, doctors prescribe it. Insurance companies pay for it. Insurance companies then pay for it through the premiums of people. All those excess pills that gave the pharmaceutical companies outsize profits are still out there and unused. Uh And this occurs on a rotating basis every time the prescriptions refilled. So this program is life saving. It's in place. But without this legislation Then the manufacturers obligation to fund the program will sunset on December 31, 2021. Again the program will sunset on1715 December 31, 2001. The funding of the program. So this legislation simply eliminates the sunset.
It makes the program permanently funded by the manufacturers. Um This bill received a favorable report last session. It was in the Senate version of the opioid bill Care Act two sessions ago but it was removed in conference. So it was even adopted in the Senate version of the FY22 budget as a five year extension of the sunset. Um, So it's our hope that you know, we will get beyond these other vehicles and do it through this this bill this legislation and that it would make the program permanent. This program saves lives. This legislation does not cost the commonwealth money. In fact, it saves us money and medical and legal spending and helps keep our waterways even our waterways cleaner. The program has been successful. Should remain. And I respectfully urge a swift favorable report of the legislation. I'd be happy to answer any questions that you may have on either of these bills and I very much appreciate the opportunity to present testimony.
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Certainly Senator, do we have1785 any questions for senator keenan? Okay, seeing none. We're going to return to S 12 th 21 17 for the second panel consisting of Geraldine Burns in Sonia. Stay below Miss Burns please. Floor is yours. Thank you.
[GERALDINE BURNS (BENZODIAZEPINE INFORMATION COALITION):] [SB1260] [HB2117] Thank you. Mr Chairman and Senator Cyr And I want to thank this committee for hearing our stories and facts about this class of medications. Want to make a point of saying that I'm not1810 against these drugs. Um I want to look at some of the fact that we've gone over these past years and things dr Charles Woodfield in his book. Not crazy. You may not be mentally ill. States. Benzodiazepines have one of them debilitating withdrawal reaction in all of medicine. 1961 in the Journal of American Medicine. Dr James, White’s, article menstrual irregularities, the effect. First year we were here just about every woman who testified had either DNC get younger, childbearing ages given this class of medical distribution, I had an unnecessary hysterectomy at 41. If you google benzodiazepines and dementia any articles three by Harvard Health publishing from Harvard Medical School.
Can you imagine what happens to somebody in the 20 to thirties who went into their jobs with a minor issue 20-40 years later having symptoms of adventure and must now suffer horrific withdrawals trying to get off this medication. 60% of all opioid-related deaths involved Benzodiazepines, my own niece died from this combination taken as prescribed. They have now been two symposiums on benzodiazepines, television specialist documentaries, organizations. Set up 20 books written by survivors. Books written by medical profession, numerous online support groups to help those suffering other countries have organizations where you else We still have nothing in the 25 years I've been advocating As we were first here in 2016 becoming more and more known about the horrible withdrawals. In the long term suffering events of as beens. People are walking into the doctor's offices to sign stating1918 they are no longer prescribing Benzodiazepines. People are being cut off cold Turkey 1979 when Senator Ted Kennedy led hearings on legislative reform for Benzodiazepine, no policy change occurring.
Can you imagine if we're trying to do what we're doing today happened back then and many wouldn't have had to live on disability, many would have been able to continue with their careers, many wouldn't have had their marriage is dissolved or the fuck away from them. And then money would have had the retirement cut down to nothing. Many would have been saved from the suffering. They've gone through those that have killed himself because1952 their withdrawal was so brutally ever now. Their families continue with the suffering of missing loved ones. None of us are here today, speaking for ourselves, we are speaking on behalf of those coming after us. This truly is an estrogenic illness dr, drug induced and each one of us here testifying has been harmed. None of us were warned of the potential dangers of this class of medication. I'm sure any doctor that testifies against this bill knows that there are problems with the lack of they themselves are not fully educated. Will save lives. Thank you.
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Thank you Miss Burns Next, we will hear testimony from, from sonia steve blow from the Benzodiazepine information coalition. Hi, can hear me okay. Right,2003
[SONJA STYBLO (BENZODIAZEPINE INFORMATION COALITION):] [SB1260] [HB2117] Yes, Okay, my name. Sonja. I'm a licensed social worker, lifelong mass resident. I'm a board member of BIC. I'm also a medically harmed, busy victim. My personal story repeats others that you'll hear here today, almost2018 verbatim. I want to provide big picture context for the following testimonies. The harm these people have experienced is the result of their central nervous systems adapting to their long term medications in ways that are not yet fully understood even by the Massachusetts medical society. You've probably heard the term brain plasticity. It's a phenomenon that we know has been underestimated medicine to date? That we're just beginning to grasp more in a sizable minority of long term Benzo patients. It's what accounts for some people's excruciating experiences.
Large segments of long term patients2055 experience the following backfiring loss of efficacy, additional problems once on psychiatric and physical, painstakingly long taper, sometimes years and are euphemistically term protracted withdrawal2061 syndromes that can last for years after stopping these drugs, such as I experience when I was extremely ill for three years after discontinuing Klonopin, A litany of providers incorrectly told me that I couldn't still2074 be affected by the drugs. It was so long out of my system. Part of this medically created epidemic is that its problems are often insidious to providers and patients alike and people can easily misinterpret their problems as underlying states as you'll hear these effects are torturers disabling and too often life ending in a power imbalance victims have been harmed and delegitimized by systems that are supposed to aid them.
It doesn't help that populations commonly prescribed these drugs are elderly, so called psych patients or women. 2:1. We are literally here speaking truth to power today. I'll add that the National Association of Social Workers Massachusetts chapter in Mental health legal advisors committee endorsed the Benzo belt. Do you think that old guard professionals you're going to overnight admit or see that such harm has been perpetrated on their watch past oppositional testimony has alleged that people experiencing problems usually abuse their prescriptions. That following tapering protocols is enough to prevent harm. And adequate pharmacological help is available for the small2136 number of withdrawal syndrome patients. None of this is accurate. It's time for a favorable passed. This is the Benzo bills for session. Many committee members are new gratefully.
Last session. The bill was reported out before the pandemic brought efforts cannot be sustained much longer by unpaid citizens simultaneously trying to rebuild their lives. In 1979, Senator Ted Kennedy Ted Kennedy held a subcommittee hearing on the dangers of Benzodiazepines. The committee ultimately recommended labelling for short term use like what we're asking for those recommendations were never followed through decades later. It's hard to contemplate the wreckage, affording patients and farm consent is the very least it should be done in response to2180 this major consumer rights wonder. By the end of this week, I'm going forward every committee member testimony that includes research. I would appreciate confirmation that the chairs will consider this testimony for me. Thank you.
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Thank you. And yes, we will consider any testimony folks send our way until early december. I believe so. Please if you have anything additional to add send it our way. Um Any questions for the panelists. Okay with that. We'll move on to individuals testifying on these bills? Jack Hobson Dupont? But it. Okay. Hello? Hello. Hello. We2225 can hear you want to
[JACK HOBSON (CONCERNED CITIZEN):] [SB1260] [HB2117] You please take it away. Oh you can okay. Uh I'm 74 years old and the author of the Benzo book available in hard copy on amazon and for free online for those who can't afford to buy it. Uh So I was a young guy in the swinging2245 60s and I and all of my friends, you teen Lee use drugs, illegal drugs like marijuana as well as pharmaceuticals, we use off label by which I mean it was socially acceptable at a party to go into some of these parents bathroom and steal a few volumes out of their medicine chest. I even got addicted to a hypnotic called Quaaludes for about a year before they were taken off the market. Then a movie came out called I'm Dancing as Fast as I can about a career woman who got strung out on valiant. It showed in terrifying detail how getting off of that drug could be an unimaginable nightmare. Even in the druggie counterculture, it became common knowledge2287 that Valium was dangerous, infinitely harder to kick than even heroin.
So I and my fellow hippies shied away from rating medicine cabinets and America's housewives got off of Valium. Um I grew up, cleaned up, straightened up, got married, had a kid had a career in computer software. My doctor put me on the antidepressant affects her, but that caused me to feel agitated. He then prescribed Xanax for the agitation when he said it was a tranquilizer. I initially declined it, telling him I had been a drug addict in my twenties and I didn't want to risk taking something like that. He assured me it was “Safe and effective.” After I was taking Xanax for about a month I started to wean myself often. I took it dutifully right before bed so I never knew there was a high associated with it, but I just didn't feel right taking a tranquilizer one day, idly mentioned to my therapist that I was weaning off the Xanax and she said almost casually, “really you're doing so well, you should just keep taking it.”
And so I did. I came that close to avoiding the utter hell. I went through years later trying to get myself safely off that damn rock even after getting2355 off it, I never fully recovered it, compromised the rest of my life. Even now,2359 15 years later I rarely sleep more than four hours a night. If either of these health care professionals Had told me that Xanax was the same basic drug as Valium only 20 times more potent. I never would have taken it or if they had told me that while it was an incredibly useful drug in the short term. But that with long term music can cause rebound anxiety that would be greater than the anxiety I originally presented. I wouldn't have taken it but they2398 didn't, I wasn't offered the opportunity for informed consent. There was no being informed about it. Thank you very much.
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Thank you. Thank you sir. Any questions from committee members? Okay next up we have Bernard Silverdale from the Alliance for Benzodiazepine Best practices. Good afternoon. Can you hear me? Yes sir.
[BERNIE SILVERNAIL (ALLIANCE FOR BENZODIAZEPINE BEST PRACTICES):] [SB1260] [HB2117] Okay well thank you for giving me this opportunity to testify. Are in favor of these bills. My name is Bernie Silverdale. I co founded the Alliance for Benzodiazepine Best Practices2435 along with a 35 year addiction medicine specialist. Dr steven Right. My wife was injured by benzodiazepines after 15 years as an RN Carey experienced atrial2449 fibrillation despite no prior history of anxiety disorder. The A fib was misdiagnosed as anxiety and she was put on Xanax and Valium, both of which are Benzodiazepines. She used these2465 drugs for about two months and developed dozens of new symptoms including depressions association and pelvic pain. Her doctor said quote Benzodiazepines don't cost those symptoms. Another doctor helped her recognize that Benzodiazepines were indeed the problem. She self tapered for 3.5 years. She had over 70 symptoms including severe anxiety and thoughts of suicide.
She is now seven years. Benzodiazepine free and still suffers every day for almost2499 11 years. She has never had a day symptom free. Well this injury goes by many names including Benzodiazepine protracted withdrawal. Benzodiazepine withdrawal syndrome. Post acute withdrawal syndrome. Benzodiazepine injuries syndrome. Benjamin. Benzodiazepine induced neurological dysfunction. And that's the reason we formed the Alliance for Benzodiazepine best practices, ABBP. Our organization is three years old. We have 20 medical professionals plus others on board. We are 100% evidence based and perform real science. We delivered seeming courses to over 2600 prescribers. We published the most complete book on benzodiazepines SHOW NON-ESSENTIAL DIALOGUE
and seven peer reviewed papers. And with the FDA we've been working on a Benzodiazepine education project for Prescribers. Well we've also reviewed over 600 papers on this problem. What have we discovered first?
The withdrawal and injury syndromes are pervasive after four weeks of use and they are often more severe than opioid withdrawal. Second, there are no definitive studies of benzodiazepine withdrawal and an injury and injury. For example between 10 and 85% are effective depending on which study you read. Several third item is several studies claim that benzodiazepines are safe. Most of these were too short term to see the actual injury syndrome and number four from working with the FDA. We know that they are aware that most prescribers we're not trained about Benzodiazepine long term use problems. Most don't know the injuries syndrome and most do2607 not know how to safely taper Benzodiazepine patients. Our conclusion informed consent is needed to inform these prescribers as well as the patients. We support these bills and thank you.
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Thank you so much for your testimony. Any questions from committee members? Okay. Seeing none. Next up we have jennifer Niles. Mhm. We
[JENIFFER NILES (CONCERNED CITIZEN):] [SB1260] [HB2117] hi I'd first like to thank the chairman Madaro Cyr and the committee2617 for being here today. My name is Jennifer Niles and2620 I'm 39 years old. I'm a long term resident of Massachusetts and I'm here to speak in support of informed consent. I'm a recipient of a daily taken as prescribed long term 15 year Klonopin prescription, which I tapered in 2016 and have now been off for a total of five years. I'm here today to speak about the worsening of anxiety symptoms when Klonopin or any benzodiazepine is prescribed for anxiety or panic symptoms. Now, panic attacks for me first began when I was 12 years old after a traumatic incident that I reported to the police, I handled it responsibly and efficiently in the moment memorized the license plate and called the police so I could protect other people. But a week later I started having panic2666 attacks, which I came to understand what called anxiety and I resolve these with the power of my mind and by 14 had made a full recovery
When I was 17. Panic attacks came back into my life when prescribed antidepressant treatment, which then lead to treatment with chronic in and once on Klonopin daily every single day I reached a point where when I took a right turn off the highway when I meant to go left, I actually had to pull into a parking lot and call for help because I couldn't think myself through the situation and was experiencing just levels of fear and confusion that didn't allow2707 me to do something as simple as turn around and go in the other direction. This was labeled as mental illness and treated with a long term mood stabilizer, a low dose antipsychotic hospital. So I'm here today to ask that you please support the passing of these very important bills for informed consent. So patients have more of an opportunity to be treated for what they're really going through rather than labeled with psychiatric diagnoses and signed up for long term care. Thank you.
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Thank you. Is not. Do we have any questions from committee members? Go okay, next step we have mary kissel.
[MARY KINSELL (CONCERNED CITIZEN):] [SB1260] [HB2117] Yeah. Hello, can you hear me? Yes, we can. I'm trying to turn on my camera here. Wait a second. Um, well, I'll2764 start um I have a very personal interest in this bill because of the injury and disability that my daughter care has suffered over the course of a nine year recovery from doctor prescribed Klonopin the effects of this drug impaired her ability to function in every aspect of her life. She has not been able to work and has had to rely on disability assistance. I have testified in the2789 past because of my daughter could2790 not today. I'm so pleased that she is also on the list to provide testimony. Karen was prescribed content for the panic attacks she experienced after her father's death. She was 37 at the time, a fully functioning competent adult who had earned a master's degree and held a number of responsible positions.
She had two young Children aged three and 6. She was given no warning about the hazards of clinic and use. Nor does she have any way of knowing that the drug manufacturer recommends it primarily for short term use. Within months2828 you began experiencing a bewildering variety of physical symptoms. Health declined in many ways, including the emergence of joint and muscle pain, gastrointestinal problems, increased anxiety and depression and2841 sleep disturbance. Through her online research, she discovered that thousands of others were suffering similar symptoms. The team to be directly related to their use of Benzos. After taking this drug for five years, she decided to begin withdrawing from it in 2012. Although this withdrawal was done under medical supervision, physician involved did not follow accepted guidelines for safe withdrawal. A rapid taper was conducted over three months, resulting in severe and long term withdrawal symptoms, the anxiety, terror states and losses and cognitive function.
Karen suffered when the drug was out of her system. We're worse than when she was on it. She was left with nervous system damage and extreme hypersensitivity to every stimulus in her environment, making day to day tasks either impossible or dauntingly stressful. It's been truly heartbreaking for all involved. Children are announced 17 and 20, but for almost 14 years of their childhood, they had to cope with having a mom who was extremely limited in what she could do and where she could go as a single parent. Karen had to have either family members or other caregivers live with her in order to keep the house running. She had to miss most family events in2920 school activities. Only recently have her symptoms largely abated and her functioning improved. This gradual recovery is uneven however, and subject to setbacks in times of stress. If this bill becomes law, patients will be better informed and fewer families will suffer. The trauma rss experienced. Thank you.
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Mhm. Thank you for your testimony. Do we have any questions from committee members from? MS council? Yeah. Mhm. Okay, next up we have Beth Harris r they're just checking the sound real quick. You're good to go.
[KARIN JERVERT (CONCERNED CITIZEN):] [SB1260] [HB2117] Um Good afternoon. My name is Karen Jerbert and today I'm advocating and reading testimony for Beth Harris. Their testimony is as follows. Thank you to the representatives for letting me speak. Today I am a certified pure specialist with 13 years’ experience and I'm a survivor of benzodiazepines. I have been following medical professionals in my long term benzodiazepine prescriptions for decades. I had no clue how disabling the benzodiazepines and non-benzodiazepine hypnotics were for people using them as prescribed or discontinuing them. I have taken all the risks, initiative planning research and responsibility for reducing my Klonopin. I have yet to meet any Dr. that knows any best practices or even evidence based practices to help myself or other patients taper.
I live in fear my doctor's will change or restrict my access to lower doses of my benzodiazepine and try to force me to increase my dose as a result of withdrawing. I have new mental and emotional challenges. Tremors, blurred vision, headaches tonight us migraines. First of my life exhaustion, pervasive insomnia, extreme restlessness, sensory disabilities and increased PTSD. It is impossible to work. I am reluctant to go outside my home because it is overwhelming to my central nervous system and involves days of recovery. I have one international online peer support meeting run by the Wildflower Alliance. This has been a lifeline for myself and many in our community prescribed benzodiazepine harm exists even if some professionals blame patients and attribute tolerance, withdrawal3075 challenges to mental illness which I would describe as ignorance and possible malpractice.
I was uninformed when I followed my medical professionals into this dangerous and Pontet potentially deadly quagmire. I feel fortunate that systemic benzodiazepine medical harm did not kill me. I have long term concerns about potential dementia. I am a white patient who has had many privileges and it has still been horrific. It is long past due that benzodiazepine and benzodiazepine. Hypnotic patients should be afforded informed consent. It is the very least that should be done. We also need withdrawal prescription protection as well. We cannot wait any longer people are dying while more people are being prescribed this complicated drug. Please pass S 1260 H 2117. The Benzo bill this session. Thank you very much.
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Thank you for the testimony. Any questions from committee members? Mhm. Seeing none. Next up, we'll have Rebecca rusts.
[REBECCA RUSS (CONCERNED CITIZEN):] [SB1260] [HB2117] Hi, hi, good afternoon. Members of the board. My name is Rebecca Russ. I am a nurse, mother, recent grandmother and resident of the state of Massachusetts since 1983. Uh in the emergency room in October of 2002 for a back spasm that I had suffered after an injury on the job. After seeing a local neurologist, I was kept on the Benzodiazepines Valium for about 15 years. I took it as prescribed. I was given 10 mg tablets which I could take up to four times daily for muscle spasm. I never took that much. Typically, I would take 5-10 mg at bedtime. During that time, I slowly began to suffer what seemed like unrelated symptoms. Those symptoms chiefly being hypothyroidism, vision changes and loss of vision, a slowly worsening generalized anxiety order of which I had never had anxiety, insomnia, symptoms of air hunger not made better with the use of an inhaler dizzy spells, Random heart palpitations and all with no physical explanation.
As to after successful spine injections treatment, I stopped taking the Valium. I was no longer in pain. Suddenly my unrelated symptoms became much worse. The generalized anxiety order turned into panic attacks. The insomnia was crippling. My thyroid became uncontrolled the air hunger. Like somebody was sitting on my chest. The palpitations just multiple times daily. Mhm. Um I'll still with no physical explanation and I began to develop agora phobia. I never had issues with anxiety before taking benzodiazepines unknown to myself and doctors at the time. These are all symptoms of inter dose withdrawal and benzodiazepine injury. My general practitioner at that time gave me SHOW NON-ESSENTIAL DIALOGUE
at a van for the insomnia because I was going days at a time without sleeping. The dose was 0.5 mg at bedtime. I took it exactly as prescribed for the first couple of weeks. It worked well. Then those unrelated symptoms started insidiously creeping back in along with new more terrifying ones.
The right side of my face would go numb, constant, intense head pressure, like the world's worst sinus infection, a perpetual numbness in my toes and up the side of my leg, episodes of sudden onset, extreme tachycardia and high blood pressure for which I was given Matobo law and licensure pro more pills. All still with no physical explanation and panic attacks. These might have been the most troubling out of nowhere with3318 no warning. I would suddenly be gripped with indescribable terror of impending doom and would literally be unable to function if I were driving, I would have to pull over till it passed. If I3326 were in a store, I would have to run and hide, go sit in my car. Social situations became impossible. I began to miss more and more work chewing up my sick days no one could figure out what was wrong with me. And like my life began to fall apart. I started to think maybe it was all somehow related to Benzodiazepines. After stumbling across the website, Benzo buddies researching symptoms and called my doctor.
She cut off my prescription immediately, and that is when the mouth of how opened up and swallowed me. Some of the worst symptoms I suffered were crippling, insomnia, aphantasia Tremors, SHOW NON-ESSENTIAL DIALOGUE
f asia, mutinous, terrifying hallucinations, dangerous tachycardia and hypertensive crisis crushing depression and suicidal ideation, extreme depersonalization and the realization, a constant state of terror, like panic, had tension and pressure. So bad it felt as if my skull was trying to rip itself apart. I was unable to work or even leave the house. I was completely dependent on friends and family for my needs. Sometimes I couldn't even walk to the bathroom without help because the dizziness was so bad. I found a new doctor who reinstated me on my original dose of 10 mg of Valium at that time and slowly tapered me off per ashton. Manual guidelines recommended to me on Benzo buddies.
Over the course of nine months, I credit her and those I found on the internet on that Benzo buddies site with saving my life after a year and a half away, I was finally able to return to work and now, here I am 3.5 years out and my symptoms have for the most part disappeared. But for a few lingering Ayers My vision has never recovered. I will still get small panic attacks here and there, episodes of air hunger with transient moments of head pressure and tension. I don't get any more. I feel them. I know what they are has expired.
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Ms Russ. If you wouldn't mind, you can also send us uh, you know, any further testimony you have, you can send to what you've written form and we'll be sure to taking into consideration. Okay?
[RUSS:] Okay. If you have any questions, please feel free to ask me.
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Yes. Do we have any questions from committee members? Okay, hearing none. Next up, we'll have marty cook. Hello? Okay. Yes.
[MAMIE COOK (CONCERNED CITIZEN):] [SB1260] [HB2117] Okay. Um deep thanks to the committee and representatives for being here today In 2003 at my yearly physical, my trusted primary care doctor. Many years prescribes Xanax to me for work3492 stress. I was3493 initially grateful for the medication and believe that it helped a great deal. Eight years later in 2011, I was diagnosed with breast cancer. I had3502 a double mastectomy. The four days in the hospital following my surgery were excruciating both physically and emotionally. The pain from surgery was to be expected that the serious side effect. Other serious side effects were not everything was too bright, too loud, too hot, too uncomfortable. Once I was home I remained uneasy, sad and fearful. I would learn later that these are all symptoms of benzodiazepine withdrawal. Five years later in 2016 I was feeling increasingly unwell with excessive menstrual bleeding, chronic anaemia and gastrointestinal problems.
A gastroenterologist arrest3540 suggested I stopped taking Xanax after trying and failing to taper at the rate my primary care doctor suggested I entered a detox center where they gave me Sena Barber it'll to prevent seizures and to monitor for the risk of fatality that can be caused by sudden cessation of benzodiazepines. For the first year after stopping Xanax, I could not sleep, eat or drink without discomfort. I had severe cognitive impairment, memory loss, no short term memory at all. I experienced dizziness, nausea, migraines, sensory disturbances, muscle pain, night terrors, involuntary tongue thrusting, frequent urination, depersonalization, anxiety and more Some of these symptoms, such as depersonalization still linger When3590 my father died in March 2021, it has been four years since I had truly felt connected to him. After a lifetime of closeness and love. I learned through experiencing this cute for acute withdrawal in 2017
That what I experienced in 2011, following my mastectomy was a slight3611 aversion at the same same syndrome due to the interaction between Xanax and an antibiotic. I was prescribed at the time I have not been anemic since I stopped taking Xanax in 2017 and I understand now that the Xanax caused the hormonal and3629 menstrual issues that resulted in the uterine ablation with permanent consequences. Had I known the risk and the potential for negative life altering outcomes? I never would have chosen to fill that first prescription. We need informed consent to become the law. The potential loss of physical, emotional and psychological health as a result of these medications. It is devastating but preventable. We want others to be informed of the possible side effects from withdrawal risks of benzodiazepine Houston cessation. Help please help us do the right thing. Thank you.
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Mhm. Thank you. Do we have any questions from committee members? Okay next up we have john state Yeah. Good afternoon. Can you hear me? Ok. Yes, sir.
[JOHN STAIGHT (CONCERNED CITIZEN):] [SB1260] [HB2117] All right. My name is John Staight. I'm a patient testifying today from Colorado where our state legislature recently passed HB 2117 S 1260. Which requires prescribers to query the PMP for benzodiazepine prescriptions and works to establish the following one limits on Bernadette Benzodiazepine prescriptions for certain conditions to board rulemaking to allow for appropriate tapering off Benzodiazepines to avoid abrupt discontinuation and three cmi requirements regarding best practices for prescribing Benzodiazepines. I was first prescribed Xanax in my late teens when I became anxious during a transition the transition from high school to college life. I was diagnosed with an anxiety disorder and for the next 31 years I was prescribed Benzodiazepine by the psychiatrist. I saw I always took my medication exactly as prescribed, I was a trusting, compliant patient.
I told every doctor I ever saw that I was on Xanax. None ever expressed a concern about it. In 2013 my health began to decline for no apparent reason. I experienced bizarre physical symptoms and crippling cognitive impairment. Over the next four years, I saw dozens of doctors and medical specialists about my ever growing list of symptoms. They had no answers. By 2017, my wife and I were convinced I was dying of a disease. Not yet diagnosed that fall, I3766 was referred to the Mayo Clinic where I went, underwent a very thorough two week long neurological work up, I was diagnosed3774 with suspected autoimmune encephalitis, for which I was given weeks of IV steroid infusions, followed by weeks of IVIg infusions. After showing no improvement. My diagnosis was changed to possible genetic, possibly the genetic form of ALS. I had watched my sister die a horrible death from ALS and I was terrified.
I asked my Mayo clinic doctor the same question I had asked every doctor to that point, could my symptoms be related to my medication? The answer was always no, It's not your medication. Then one winter morning in 2018 I woke up in all of my symptoms were unbearably intense. I3810 left the house in a desperate state and I was acutely suicidal3815 for the first time in my life. My seven-year-old son and five-year-old daughter almost lost their daddy that day. In the days? Just prior my doctor had reduced my volume dose, which I now know sent me further into acute benzodiazepine withdrawal. My wife and I googled Valium withdrawal, Xanax and Xanax withdrawal. We found online pure support sites and the Ashton manual where every single one of my symptoms was listed. We couldn't believe it.
I had been to dozens of doctors in the prestigious Mayo clinic and they could not recognize the withdrawal symptoms associated with one of the most commonly prescribed classes of medication. Benzodiazepines which have been in use for more than 60 years. I now know that the benzodiazepine intolerance, my prescriptions caused actually caused the chronic anxiety and depression I suffered from for years for decades. I'm still tapering off my benzodiazepine and is a tortuous multiyear process during which I can no longer work. If doctors cannot or will not become educated on the dangers of this class of medication, then I believe it is the responsibility of the legislature to step in and protect the public. If I had been given written informed consent at any point in my 31-year history of taking Benzodiazepines with cycle of psychiatry, genetic harm could have been stopped. Thank you.
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Thank you. Mr State. Any questions from3898 committee members? Can3900 you please call DR Ritvo and Martelly Next. Any questions from? Excuse me? Any3905 questions from committee members for the last uh Panelist speaker. Okay, I do see in the chat a couple of things I want to address. First of all, the meeting is still being recorded. Whoever asked that. Second of all, Yes, we did call on Dr Alexis Ritvo earlier. I understand that you were unable to make it then, so please feel free to join now to testify.
[ALEXIS RITVO (COLORADO CONSORTIUM FOR PRESCRIPTION DRUG ABUSE PREVENTION):] [SB1260] [HB2117] Thank you all and I'm sorry that I wasn't able to be there earlier. I had3939 to get my four-year-old tested for COVID unexpectedly. Um so uh chair and members of the committee, thank you for the opportunity to speak to you today. My name is Dr. Alexis Ritvo. I'm a board certified addiction psychiatrist and assistant professor of psychiatry and the program director for addiction psychiatry fellowship at the University of Colorado School of Medicine. I'm here today, representing myself and the Benzodiazepine action workgroup with the Colorado construction for prescription drug abuse for which I am founder and co-chair. I'm here to express my support of the Massachusetts. Senate Bill 1260 House Bill 2117. Benzodiazepines are powerful controlled substance that inhibit the central nervous system and are most commonly used to treat insomnia, anxiety, seizures, alcohol withdrawal and muscle spasms. Several medical experts have referred to prescription benzodiazepines as the next prescription opioid epidemic?
I see a lot of similarities with current trends in benzodiazepine prescribing and how the opioid epidemic began with increasing opioid prescribing for pain without proper understanding an education of prescribers and patients about the risks of long term prescription use. The percentage of medical visits where Benzodiazepine were prescribed have doubled from 2003 to 2015. And half of those prescriptions came from primary care where physicians we know um and providers are given very little time to see patients to address a lot of issues and often prescribing the medication as much faster. Um The thing that they can do rather than trying to get them to other, more evidence based long term care.
Um We also know that while evidence says that patients really shouldn't beyond these medications beyond 2-4 weeks, that they end up with tolerance and many long term risks that majority once they are started will be continued on on these medications long term. Um and again, that's often because of a lack of other resources um and lack of education. Um I can say this has even affected me personally. A few months ago I learned immediate family member of mine had been prescribed Xanax for anxiety related to a medical issue. Um and this was prescribed by a very well-known community primary care physician. And I was kind of shocked to learn that um they did not even ask my family member if they understood that by taking this regularly Beyond4087 2-4 weeks, they developed physical dependence.
Um and if they were to stop it abruptly um they could risk withdrawal symptoms, worsening of their symptoms, maybe even um uh rebound or a debilitating seizure. So, um I think we need to think about the injury that um some patients experience with long term benzo use kind of parallel to long COVID syndrome. I think there's a lot, we don't know about it and it causes a myriad of symptoms, but that doesn't mean that it doesn't exist. It's that we need more research. Um I will say the last thing I'll say is that we were able to pack at um to provide mandatory drug monitor checks as well as initial prescription describing Pencils for someone that had not had a script in the past 12 months. And so I think this bill is a direction with informed consent. Thank you so much a little bit.
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Thank you. Dr Ritvo. And I hope your child tests negative. It is safe and healthy to any questions for dr Ritvo. Okay. Uh next we will hear from attorney Amy Parco.
[AMIEE PARCO (CONCERNED CITIZEN):] [SB1260] [HB2117] Thank you. My name is Amiee Parco and I live in Winthrop Massachusetts with my two Children in a lifelong Massachusetts resident. I am an attorney and I represent survivors of domestic violence in restraining orders and family court. I've been free of benzodiazepines for almost five years. And this is my story. I was prescribed a low dose of Klonopin. Benzodiazepine after experiencing insomnia while going through a high conflict divorce in 2009, my doctor warned me that this medicine would be habit could be habit forming and that if I took it more than when I was prescribed, I4200 would be I could become addicted. I always took my medicine exactly as prescribed. The medicine stopped working. So my doctor continued to my prescription periodically. By 2014, my prescription was for two mg of Klonopin4212 per day.
After five years on Klonopin, my divorce was over and my life was in a good place. I was happy. I was healthy, had sold my business of 12 years and I was about to start my lifelong dream of attending law school. The medication was no longer doing anything and I couldn't feel any effects. So I went to my doctor and I asked her if I could stop taking the medication. My doctor told me that I should have tape for the medication. So she prescribed me a much lower dose. She wished wished me luck, that was it. I immediately began experiencing what I now know was Benzodiazepine withdrawal syndrome. My symptoms included sleep problems, anxiety, weight loss, shaking hand, tremors, night sweats and cognitive difficulty. My worst symptoms were fatigue and weakness as well as intense muscle pains, spasms and cramping.
The most unusual symptoms I experienced was something called agenesia, which can be described as sort of an uneasy feeling in your body. Um for me, this meant constant feeling of pins and needles in my feet, the kind you get when you're sort of sitting on your feet and your foot falls asleep except it wouldn't go away. It drove me bananas. I spent three years tapering off Klonopin. I worked with four different primary care doctors and at least three psychiatrists. None of them had any advice other than to taper more slowly or just go back on the Klonopin. Most recommended an antidepressant. Even though I had never been depressed. I was treated as a drug seeker, a drug user and a crazy person. One time I was even accused of forging a prescription because my psychiatrist forgot to sign it and the4316 pharmacist came after me and the doctor did and nobody believed me, it was painful.
I was completely alone until I found an online support group, like many others here. The people I met online taught me how to use a pill splitter and break one pill up into many micro doses. I learned how to use a food scale to make sure the doses were4337 exact one time I tried to add pill powder into a liquid to make my micro doses even smaller to avoid the pain and problems. I was having my kitchen looks like a science lab.4349 These kinds of sites are not run by medical professionals and they should not be permitted to be giving this kind of care just in closing my life is so much better now. I'm feeling much better. I still work with a therapist to process the problem of what happened to me and I just ask you all today to pay attention and to um passed this bill. Thank you.
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Thank you. Mr Marco. Any questions from committee members? Yeah. Okay. Next up we have Joan de Jalen. Hi. One second. Good time. All right. Mhm. Mhm.
[JOAN DALIN (BENZO WARRIOR COMMUNITY):] [SB1260] [HB2117] Hi. I'm Joan Dalin and known as Joanna. I'm a resident of North Hampton Massachusetts and a doctoral candidate in psychology on leave with four years of counseling experience. I'm also an admin to Benzo warrior community, an internet group of 2000 people with benzodiazepine stories, much like my own I strongly support informed consent. My Ben's story begins with the Xanax. I was prescribed 20 years ago for grief and panic after a loss. I experienced many debilitating symptoms during the two years. I took Xanax as prescribed by my doctor and withdrawal symptoms during a two-year taper. During that time, I almost lost my life to a terrifying symptom called aphantasia, which made me feel that I had to walk or run faster than my body was capable of moving. I survived a second taper in 2012 after I was prescribed Valium in 2010 for anxiety and depression.
Today's story, however, begins in 2018. My mother had just died of brain cancer which caused brief and panic again. Although he knew my Benzo history. My psychiatrist prescribed Klonopin. I know it's dangerous. I had learned the hard way, but when I brought up its pros and cons, my doctor reassured me that I was the only patient he was aware of who had these issues. He believed it would be safe if he took only a quote low dose of up to 1.5 mg per day. I wanted to believe this and I trust that he believes it himself in hindsight. I think he had seen the adverse effects of Benzos that attributed them to the worsening4485 of preexisting conditions. By March of 2019, I was stuck in a terror state. I was no longer able to feel happiness, motivation or even a sense of connection that brought me solace not to myself, others nature or God.
I became unable to work and had to resign from my pre doctoral internship. My doctor recognized that the problem was likely to Klonopin and we agreed it was time for me to taper. Over the next two years experienced over 60 emotional4513 and physical symptoms as I slowly tapered. The worst of these was a milder but unrelenting version of the agitation I had experienced 20 years previously aphantasia I have heard the symptom described as inhumane or torture. It is not an exaggeration. I didn't know. And my doctor hadn't warned me that your central nervous system can become sensitized to previous withdrawals. This was my third time, tapering. My symptoms were so bad that I couldn't care for myself.
The financial and emotional toll was extreme. I've been Benzo free for six months now, but that is not the end of my story. I still experience debilitating symptoms every day, including aphantasia and I'm still not well enough to return to my doctoral program most days.4557 In fact, it's hard to get dressed or shower. My testimony raises an aspect of informed consent that is sometimes ignored. It's impossible for an uninformed doctor to facilitate informed consent. Informed consent requires informed doctors. If the Benzo bill is passed, doctors will have to be better informed. Please prevent future Benzo injuries bypassing the Benzo bill. Thank you for hearing my story.
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Apologies. I was muted but thank you for your testimony. Do we have any questions from committee members? Mhm. Okay. Next up we have Cheryl ST john
[SHERYL ST. JOHN (CONCERNED CITIZEN):] [SB1260] [HB2117] Good afternoon, I'm Cheryl. Um so I wanted to testify regarding my sister, my sister Shannon Roy was prescribed Klonopin from her nurse practitioner for roughly 20 years. My sister was successful, beautiful in love life. In December of 2017. She started to have flu-like symptoms that would not subside. She was feeling anxious and she could not drive to work or accomplish life's normal routines. She eventually stopped working and was on disability. She progressively got worse and she knew the Klonopin was no longer working in causing an adverse reaction. Doctor wanted to prescribe her different benzos or high doses of Klonopin. but she knew that she could not go back to take another Benzo again. My sister's entire body eight and she never slept. She had zapping in her head as she called it, in her brain, in her brain when she tried to sleep. The nights were pure hell and the days are not much better.
It was heartbreaking watching her go through this and hard for my family to understand. We4673 did not know about Benzo withdrawals and we were counting on the health care system to help her. But Dr. after Dr. dismissed her and told her that there was no such thing as having these symptoms for this long from Benzo withdrawal. At this point, she was eight or so months, eight months or so. Um still living in hell. And those were her words, her world was turned upside down, her words verbatim. She did not want to go to a psychiatric hospital because she was never mentally ill. She just had anxiety when sleeping like millions of people do. She was losing all hope and agreed to go to an appointment at Mclean Hospital. My4711 mom took4712 her after a full day of evaluation.
Maclean told my sister that she did not belong there. That she does not need a psychiatric hospital but need medical help. The medical doctors told her it was all in her head, the health care system failed her. She went home and I promised her we would keep fighting this and find the right doctor who would help her. She hugged me and said she wanted to be alone and tried to sleep. I respected that and told her I loved her and I'd see her the4742 next day. Later that night, August 11, 2018. She ended her life. I will feel the guilt for the rest of my life. For not being able to save her vented withdrawal is4762 very real and prescribed as need to understand the effects. These drugs have one term effects on the brain. Thank you so much for listening. Mhm. Any questions?
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Thank you for your testimony and questions. Committee members. Mhm. Okay. Uh Next up Charlene Katsuji the Benzodiazepine coalition. Yeah. Mhm. Is Miss Cassidy with us, is that okay? Okay. Next up, Paula Mooney, you're muted. Miss moody. Mhm. We got you now. Okay, thank you.
[PAULA MOONEY (CONCERNED CITIZEN):] [SB1260] [HB2117] Um Yes, my name is Paula Mooney Um when I was in my 20s, I met with a doctorate. Yes. General Hospital for help dealing with migraines. I left that appointment with prescriptions for three mg of Klonopin and an antidepressant of 150 mg. I'm4847 now in my 60s and a mere shadow of my former self for over three decades. Doctors automatically filled these prescriptions, never questioning why the meds were prescribed how long it had been taking them? Nothing. I owned a private school and enjoyed working with young Children and their parents for nine years until my health started spiraling out of control anxiety, panic attacks, diagnoses of auto immune disorders. I developed serious gynecological problems that required numerous medical procedures. Ultimately, it was diagnosed with cancer.
I also called off my wedding at clinics. I couldn't explain4897 why because I didn't know myself. I didn't time realize the enormity of this mistake which resulted in my never being able to have Children. Eventually I had to sell my school and my home and moved back in with my parents until they passed away thankfully. I was blessed with wonderful siblings who have kept me in the family home. Another heartbreaking side effect of this drug is agora phobia. I didn't understand why. I was no longer4937 comfortable going out in public with people whom I knew well. People call for just so long and then they give up. I've lost most of my friends. My world was closing in on me. I began developing signs of dementia. I began falling resulting in4960 several concussions. A very dear lifelong friend, we never gave up on me, began checking in on me.
She4968 gave me the Ashton4970 manual and then took me to my doctor who said she suspected that many of my helped issues were related to long term use of Klonopin. She wanted me4987 off the4989 drug and referred me to a specialist for help. Yeah. I also met with well renowned neuropsychologist at Brigham and women's hospital where I learned that I've suffered permanent cognitive impairment I struggle daily with focusing on simple tasks, formulating my thoughts simply remembering. How is5016 this allowed to continue for over 40 years? I can't recover the years I've lost. I'm sorry, I can't recover the years I've lost.5029 But this bill will prevent what happened to me from happening to others. Thank you for listening. It is my sincere5040 hope that you will give serious consideration to passing this bill.
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Thank you appreciate your time. Do we have any questions from this movie? Okay, next up we have lisa nash.
[LISA NASH (CONCERNED CITIZEN):] [SB1260] [HB2117] Hi, thank you in advance for listening to my story. I was a software startup consultant for 35 years. I have not been able to work in almost five years and I'm now on disability. I would like to share my experience about the consequences of taking a bet. Benzos prescribed. I was prescribed Xanax for a medical procedure that I had done 22 times. I was never like thousands of others prescribe Xanax for anxiety. But as a muscle relaxer I began to have symptoms that my doctor thought were coming from my neck injury. But after he researched more about the side effects of Xanax, he realized all of the symptoms were exactly the same. My list of symptoms is very long to save time. I will not speak about them but will include them in my written testimony. What was the5102 root cause of my severe symptoms my neck or side effects from Xanax. The only way to find out was to taper off the Xanax.
When I asked my primary care doctor who had prescribed the Xanax to me for years, how do I safely slowly taper? His response was that he had no idea how he had never tapered anyone before. He then demanded I do an extremely rapid taper that made me bedridden for months. He would no longer prescribe Xanax to me and left me stranded, risking seizure and5139 death from a cold turkey withdrawal, sending me to the emergency room who would help me. I searched and searched until I found Dr. Edward Silberman, the chief of psychiatry at Tufts. When he looked at my CVNs Xanax history, he became so upset by the extremely unsafe taper and said that my primary care doctor would have killed me if the taper had continued. He told me to stop the taper immediately. I was 95 lb of completely bedridden.
We weren't sure I would be able to make it to my daughter's wedding. I felt and looked like I was dying. He has me on a slow body guided taper. His reminder to me is always to remember that this is a marathon, not a sprint. I've been tapering for over two years now. Two years of my life taken from me with an unknown amount more to go. He figured out that I was alerted to the entered ingredients from the generic form Xanax called Alprazolam that cause symptoms of my extreme facial swelling. He also acknowledged to me, he also apologized to me from my unnecessary suffering due to my primary cares, lack of knowledge. I have lost everything. My job, my life savings, my house, my ability to do things. I used to do my family, me.
My Children won't speak to me. They think I'm a drug addict. I've lost all of my old friends. If I had been made aware that after nine days of taking this drug, that it would take years to get off and destroyed my life, I never would have taken it. Let's educate everyone. So what has happened to me? It doesn't happen to you. Let Dr Silberman be used as the people call the doctor should treat a patient who is tapering off a Benzo to Keefe Let's use our experience to teach other doctors how to take for their patients comfortably. Education is the answer. Would you want this to happen to you? Please pass this bill to prevent future harm? Let's be the leaders, John F Kennedy wanted us to be if not Now, then when? Why would anyone else suffer necessarily? Thank you so much for listening and please please pass this bill, prevent future harm.
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Thank you Any questions from committee members. Okay, I do just want to pause and just expressed gratitude for all those who are sharing such personal stories on this important subject matter. I recognized as do my fellow committee members that this is not easy to dive deep into your personal lives and share these stories and I want you to know that we as members of the legislature are better off for hearing your perspectives and they will absolutely be included in the deliberations on these pieces of legislation. So thank you so much to all of you. Um Next we will hear from robert maloney.
[ROBERT MULLONEY (CONCERNED CITIZEN):] [SB1260] [HB2117] Thank you and good afternoon Chairs. Madaro and Cyr. My name is Robert Mulloney and I am a retired police officer. I loved my job unfortunately after 20 plus years of service and numerous injuries, I retired much earlier than I would have liked the year’s pain pills became a daily way of life for me, but I made the decision to stop5339 opioids and I detoxed at home, I endured three weeks of absolute hell. But then with the exception of some residual effects it was over. I adopted a healthy lifestyle, joined a gym and ate properly things were looking up with one glaring exception. My5360 ability to sleep, it never came back. I was prescribed Ambien, I had to learn for myself that this type of drug would be even harder to stop than opioids and that even with the slow taper I will return to an even more hellish and drawn out withdrawal than before and that my natural sleep may never come back. I respectfully ask that you pass this bill and leave a legacy of healing and compassion. Thank you.
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Thank you sir. Any questions from committee members for mr maloney? Yeah. Okay, next we'll hear from dr peter Martelly5408 Martelly. Sorry.
[PETER MARTELLY (CONCERNED CITIZEN):] [SB1260] [HB2117] Hi good afternoon, thank you. Uh and thanks to everyone for sharing. Uh I'm retired obstetrician gynecologist. I have extensive experience in hospital administration, patient safety, risk management, and medical education. My last three years of practice, I was the medical director of methadone clinic here in fall river Massachusetts serving over 800 patients a day. I also have an extensive knowledge as far as the abuse of benzodiazepines. And thanks to Geraldine Burns uh was enlisted in learning much more about them and how to taper and communicate with my primary care colleagues uh in order to get patients detox benzodiazepine use. I think one of the5456 things this bill impresses me with is that is uh ability to enhance communication between practitioners and their patients. Uh to foster the promotion of uh knowledge of these widely prescribed and often misused medications. Um So thank you very much for your time and thanks to my colleagues as well.
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Thank you sir. Any questions for dr Martelly. Okay, I do just want to remind committee members that5493 there was a poll in your in box that is closing at five p.m. So in just about 15 minutes if you have not already replied to the poll please do so Next we will hear from Canada. So Sullivan Sutherland. Mhm. Mhm. Can you hear me okay? Sorry thank you. Um
[CANDACE O’SULLIVAN (CONCERNED CITIZEN):] [SB1260] [HB2117] Thank you all for being here allowing me to testify today. My name5531 is Candace O’Sullivan of Sutherland. I strongly support this bill. Massachusetts residents since 1971. Software engineer 35 years zoning board of appeals, Vice chair in my town until prescribed drugs left me disabled and dependent on SSDII On March 2016 in the 1990s. My primary care doctor prescribed me SHOW NON-ESSENTIAL DIALOGUE
at a van Ambien daily to deal with stress relating to my mother dying of cancer. I develop dependence, withdrawal symptoms that resulted in the addition of more drug prescriptions. My original symptoms worsened and new ones began to appear. My advanced doses were increased due to drug tolerance and my symptoms worsened. I was referred to a psychiatrist but they proved unable to taper me.
In 2007. I tapered off the advance, losing 95 pounds due to horrific withdrawal symptoms in 2008 when my husband passed away from being overprescribed opiates and benzodiazepines himself. My out of an prescription was reinstated to six mg A day plus with uh Ambien I was alone with no family or wake. I now believe the increase in advance cause fibroids resulting in my hysterectomy. Mhm. My employer of over 20 years. Dell EMC. Stop paying me I qualified for SSDII disability in 2016. Not my employer, Dell EMC Dell Technologies out long term disability plan. Then my employer Dell Technologies, Dell EMC kicked me to the curb in 2018. This drug cocktail caused me amnesia, cognitive problems, autoimmune symptoms, neuromuscular disease, chronic pain and mental health issues that made me unable to work.
It all began with symptoms caused by me at of an ambient prescription. At a certain point I realized my problems for the result of poly drugging. That all began with my benzodiazepine hypnotics prescription. I contacted a rehab add care in Worcester but was told my Dell EMC blue cross blue shield plan would not cover add of an ambient taken as prescribed drug sensation versus alcohol or drug abuse. I believe my doctor tapered me too fast though he follows standards of care. My health greatly declined. I was sick in bed unable5693 to drive alone and was using adult bladder control diapers for over a year.
There were no resources to help me save for Facebook withdrawal groups where I found other people in similar situations, experienced the same horrific mental and physical pain of as prescribed withdrawal. Since dropping all prescribed pharmaceuticals, I am physically improving my third three kidney disease completely reversed. I lost 95 pounds a second time and my Parkinson's the story of competitive drug withdrawal blah blah blah. I am grateful to God I am alive for recognizing it was a prescribed Polly Bergen. Starting with a benzodiazepine. Please pass H 1739 SB5739 2266. It will prevent harm if we had been given fully informed consent. My deceased husband Alex Sutherland and I would never have taken these drugs which led to his death and my disability and decades of pain and suffering. Thank you.
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Thank you miss. So Sullivan Sutherland. Anything questions from committee members. Okay, next up, Karen Saleh, Dexia's apologies if I mispronounced that.
[KAREN PSALEDAKIS (CONCERNED CITIZEN):] [SB1260] [HB2117] That's exactly right. Mhm. Uh yep. Just silent. P um My name is Karen Psaledakis. I live in Medford, Mass. I've been a Mass resident all my life. My mother Mary Kinssel spoke earlier. So I was taking Klonopin as prescribed by my doctor from June of 2007. After having a panic attack when my father died until February 2012. Over this time my health decline in many ways, including the5803 emergence of nerve joint and muscle pain, gastric problems, increased anxiety and depression, rain fog, confusion, sleep disturbances, exercise intolerance and other strange symptoms. After much research online, I found thousands of others suffering with similar symptoms that seem to be directly related to their use of Benzos. Benzodiazepines and then began my journey to withdraw from Klonopin. But sadly psychiatrists on the5828 whole do not know how to safely withdraw people from this class of drug.
So what should have been at least a two-year taper ended up being two months and was supervised by a holistic detox center in Arizona which cost my family thousands. I had to hospitalizations. After returning from the detox centre at which time. more psychiatric drugs were added in an attempt to treat quote unquote to quote unquote, treat the withdrawal in my supposed quote unquote underlying condition. In the years following this period I have had to completely alter my life and lifestyle Prior to this medical crisis, I was a successful professional writing grants and managing programs for a large community action agency. I have a masters in nonprofit management from the Heller School of Brandeis5873 and my future was bright and full of promise. When Benzos entered my life, all that changed. I can no longer work and had to apply for disability as a single parent with no partner, I had to find live in assistance so that I could5888 continue to care for my Children.
In the early days of my healing I was so cognitively impaired, I could not even figure out how to make a sandwich. I would open the refrigerator and stare at the contents. I knew what needed, what I needed, but somehow cannot put the pieces together. The most heartbreaking aspect to all of this is how my kids have had to cope with a Mom who is extremely limited in what she can do and where she can go. And although I've done my best to support them emotionally and coordinate logistics from the couch, I've had to miss most of the outing school performances and the like fast forward to today. My life is so much fuller than the early days of this injury. I no longer need assistance to run my household and I no longer crippled by terror, anxiety, agoraphobia and depression.
I go about my days with more normality, but I'm still healing after nearly a decade. I still get very symptomatic. If I push too much for exert too strenuously, I still struggle to make plans and keep them because the way I feel so variable travelling continues to be mostly inaccessible because of how long stretches in cars leave me internally rattled for hours and sometimes days. The far reaching consequences of this kind of nervous system injury are hard to comprehend, but they are very real. And the awareness about the5965 dangers of this class of drugs remained far from adequate. If this pencil bill were in place years ago, I most certainly would have avoided the immeasurable suffering that my family and I have endured. Thank you very much.
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Thank you for your testimony. Do we have any questions from committee members? Okay. Uh, next up, we will hear from Holloway Hardiman,
[HOLLY HARDMAN (CONCERNED CITIZEN):] [SB1260] [HB2117] Good afternoon chairs and members of the joint committee. Thank you for holding this6002 hearing today. I'm also grateful to all the brave Benzodiazepine victims who are here yet. I know only too well that more people who could be here are not those who are too ill or disabled, those who are too ashamed, those who have little faith in a system that betrayed them terribly. Those who are angry and worried that they would lose their temper here because they feel like victims of a crime because they knew they deserve to be warned of the risks Benzodiazepines pose. I did too. I gave my doctor every opportunity to warn me. I was prescribed Klonopin in the mid-nineties for chronic fatigue syndrome. My doctor told me this was a well-researched protocol. I6043 asked if Klonopin was like Valium telling her that it did not want to take a Valium like drug.
She assured me that Klonopin was safe, telling me that it had been6053 developed to address risks that Valium posed and that would slow my6058 overactive CFS system down. She further elaborated that people took it for their entire lives and that as I was living with a decent degree of New York city stress Klonopin was also great for taking the edge off her words. I have since wondered if that claim wasn't borrowed from a farm, a sales rep since I have heard the same language used many, many times over the years to promote the so called safety of Benzodiazepines. Years later actually, the very day I learned by googling that I could have seizures if I stopped Khan up and abruptly I found the Ashton manual a guide using the research of the late Professor heather Ashton of Newcastle University.
Her tapering guide has been helping people around the world for many years. Yet my doctor knew nothing of it. Too few do. After showing the6107 Ashley manual to my doctor, I did secure her promise to help me taper. As absurd as it seems. Midway through my taper, my doctor's office decided not to refill my prescription. No more refills for you. I was told by my pharmacist in Williamstown Mass. My doctor's office was ready to cut me off after prescribing Klonopin willingly for over 10 years, knowing that many times I never even feel the prescription and knowing that6133 while I was tapering6134 I was at that point taking less than a quarter of what had been prescribed for me as a daily dose. My story is not uncommon.
My pharmacist opened up and told me that Benzo prescribing was out of control in our area, that she was seeing many customers struggling with Benzodiazepines adverse effects. They had no idea why they had punishing symptoms like brain zaps, agitation, unexplained panic, severe pain, aphantasia and malfunctioning GI tracts. I asked her if she would consider speaking at one of the earlier hearings held here for Benzodiazepine legislation. No way. She said she would lose her job. What does6176 that tell you? Something is very wrong. This legislation is urgently needed. As citizens, we have a basic right to informed consent. If doctors are not respecting that, then I believe it is your task to legislative. One more thing. You know, who else is not here. Those whose horrific benzo symptoms drove them to suicide. There are many listening. Please cast this bill.
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Yeah, thank you. Do we have any questions for Miss Hardman? Okay next up we have Ron afsa Mr Obama. Are you with us about Stephen Bishop? It's Ron offside. Can you hear me now? Yes sir. Please
[RON AFFSA (CONCERNED CITIZEN):] [SB1260] [HB2117] Thank you. I have two stories of desert devastation caused by the promiscuous prescribing of benzodiazepines. One is of my own and the other is of my sister who sadly ended her life as a result In 2013 I was started on half a milligram of out of an ironically because of an adverse effect called the realization of another drug which was prescribed off label for chronic fatigue. I was given no warnings are informed consent about Benzos and the possible tolerance6268 and dependency which could develop within a short period of time. Unbeknownst to me, a dependency marked by newfound anxiety was developing and within two weeks my dose was doubled to one mg, then increased to 1.5. When this didn't help I was switched to Valium, the doctor prescribed five mg tablets and said I could take up to four of them a day play with it. He said when that failed, I was switched to Xanax then back to SHOW NON-ESSENTIAL DIALOGUE
add even.
This experimentation went on for about a year and did nothing for the deal realization. But I had developed an anxiety which I had never had After exhaustive research. I was fortunate enough to meet people who are educated about these drugs and this condition with which I was suffering. I knew I now knew that this was dependency. Had the prescribing doctors educated me before I began these drugs, I certainly wouldn't have gone beyond the 2-4-week guideline. At this point, however, it was too late. I realized I had to stop taking these substances. What I didn't realize was how much worse the nightmare was about to get. I was told by a doctor to taper at two faster rate, which caused further anxiety, resulting in a need to reinstate the drug. This happened twice and lead to kindling and my third and final taper, it was even more difficult than drawn out. My final taper took a6349 year and four months. I've been drug free for over five years,6354 but I still suffer from protracted withdrawal symptoms.
My sister wasn't as fortunate. She had been on and off Benzodiazepine Klonopin for years since college and became sicker and sicker from dependency as the years went by. Her doctors. Not considering she may have been ill from the drug misdiagnosed her with various physical conditions and treated her as such. All while her dose of Klonopin was being increased. Eventually she was up to four mg of Clinton as she became tolerant to that the introduced withdrawal became unbearable at this point, her does who has increased to six mg and was prescribed the major tranquilizers, Zyprexa. Eventually the withdrawal anxiety came back with a vengeance and on the morning of October 13, 2015, she ended her life. The irony here was that she was a drug and alcohol counselor and didn't realize that what she was taken was worse than where her clients was taken. We're taking, I hope this and other testimonies will prompt you to finally pass this bill. Thank you.
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Thank you for your testimony. Any questions from committee members? Okay, next up Stephen Bishop.
[STEPHEN BISHOP (CONCERNED CITIZEN):] [SB1260] [HB2117] All right, thank you everybody for listening. I was prescribed the benzodiazepine for minor anxiety from running my food trucks. I took the medication as prescribed and it worked. Klonopin three times a day. I felt good. The anxiety was gone over a period of time. Years, probably the anxiety was increasing. I began developing other symptoms that I didn't have prior to6460 taking this medication. Severe headaches, worsening anxiety like like my foot on the gas pedal all the time. I could not control the anxiety. Little did I know I was intolerance withdrawal. I went to a detox out in California and they stripped me off this medication within one week. I stayed there for three months. Everybody that was coming in from alcohol withdrawal of opiate withdrawal.
They were all going home in 1-3 weeks. I was there for three months and I wasn't feeling better. I was feeling worse. I came home and I met with my doctor and I had to re estate to feel better.In order to function. My doctor prescribed me 40 mg of Valium and I did a slow taper over a period of two years. The last benzoyl across my lip was on 9th 2017. Today, 8 2021. Over 15 months off and still suffering protracted withdrawal symptoms that complicate my life on a daily basis. I still experience a laundry list of symptoms, severe head pressure. Like somebody's6525 got their fist around my brain or my brain is too big for my skull coordinators, stomach issues, exercise intolerance. After every workout. I have a half an hour panic attack over stimulation of a broken nervous system. Deep bone and muscle aches that no pain reliever takes the pain away.
Most days I feel like I have the flu a heavy dose of it but I just6550 learned to function Hill If my doctor was knowledgeable about benzodiazepines and I was told of the dangers I would have looked for another alternative. I never would have taken this drug. The quick fix6564 that I was given was the ultimate nightmare. Mhm People are turning to the online support groups because their doctors do not have the knowledge the doctors are also turning to the online support groups due to me. Educating my own new doctor, his office is no longer prescribing Benzodiazepines as he is trying to educate himself. I know it's too late for me, but if this bill is passed, it will save others from going through this an indescribable help. Thank you to the committee and thank you for listening to the testimony and thank you all. Benzo worries.
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Mhm. Thank you. Any questions from committee members. Ok, Last person to testify on this set of bills. Lauren o martian,
[LAUREN OMARTIAN (CONCERNED CITIZEN):] [SB1260] [HB2117] good afternoon chairs and members of the committee and greetings to all my fellow warriors. This is actually my fourth time testifying in five6642 years. The reader's digest version of my story begins in 1982 when I walked into a routine physical with my general practitioner and walked out with a prescription for Xanax. Xanax was my gateway drug to psychosis, hospitalizations, multiple medications and electro convulsive therapy. The possibilities of a self-determined life were wiped away with one scribble of a prescription. 19 years after my last inpatient hospitalization, I was taking SHOW NON-ESSENTIAL DIALOGUE
at a van as prescribed Byline Harvard affiliated psychiatrists of 23 years.
I had no idea fear of the perilous risks associated with its use. Mhm. In October 2015, an Angel led me to Robert Whitaker's anatomy of an epidemic. I was captivated it appalled by what I was reading.6714 My story is woven into the stories he chronicles finally decades of6718 physiological complaints validated by everyday people and formal white papers. I started slowly tapering off SHOW NON-ESSENTIAL DIALOGUE
at a van in November of the same year. The process was grueling headaches, dizziness, nausea, cold sweats, insomnia nightmares. And you know, I still have the night terrors almost every night. Um goes on and on, alarming weight loss in a row, apathy, apathy, Jha electrifying neo sharp electrical pain.
Um you know, I could go on and on about the symptoms on the point that I want to make in my particular case. Um, I'm 60 years old for me, this is permanent neurological injury from the top of my head to the bottom my feet. My body just doesn't function properly because the symptoms are so severe and so unpredictable. I'm unable to work. My story is not unique. Um, there's many others with similar, sometimes even more heartbreaking um like stories and I just would like to and with some reflection that I feel we're at6798 a fork in the road. Um on one side it's do the right thing. The other side is just look away. Um, do the right thing or look the other way I urge the committee to do the former. Thank you.
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Thank you. Any questions from committee members. Okay, we will now be shifting to S 12 9 before an act strengthening prescription drug safety and drugs stewardship scott cassell from product stewardship Institute.
[SCOTT CASSEL (PRODUCT STEWARDSHIP INSTITUTE):] [SB1294] Uh, chair Madaro and members of the6839 committee, my name is Scott Cassel. I'm the CEO and founder of the Product Stewardship Institute or PSI. I uh, I'm here to express support for S 1294 An Act strengthening prescription drug safety and drug stewardship. PSI, our organization is a 20 year old national nonprofit based here in Boston. And before starting PSI in 2000, I was the director of waste policy for Massachusetts uh, in the environmental secretary. Our organization worked closely with Senator Keenan and others to enact the current Massachusetts law that holds pharmaceutical companies responsible for setting6881 up convenient no cost drug take back kiosks and pharmacies and other locations across the commonwealth. And it also requires them to provide collection mail back opportunities.
Drug take back6893 programs are considered the safest most effective drug disposal6897 solution by the vast majority of local state and federal agencies. These drugs, excuse me. These programs keep old drugs out of our homes, which helps reduce opioid addiction. It also keeps drugs out of our waterways to reduce contamination from pharmaceutical compounds. Unfortunately, when the Massachusetts law was enacted, it contained a sunset clause that would end this program in Massachusetts on December 31 of this year, no6925 other law in the country like this one has such a sunset. There are six other states and another 23 local governments that also require the pharmaceutical industry to finance and manage the take back of unwanted medication. The latest laws were enacted in New York Maine and Oregon.
S 1294 would remove the sunset clause that is in Massachusetts. Current law that is a first step While we believe the sunset should be removed by passing S 1294. The law should eventually be upgraded to bring it in line with best practices of pharmaceutical take back programs across the country, including stronger convenience standards to ensure that collection is accessible to all those in Massachusetts, broader outreach and education initiatives6978 to increase public awareness of the program, a mechanism whereby the Department of Public Health can evaluate these programs and recommend modifications and strengthen, strengthening them and more robust annual reporting requirements to ensure programme transparency and effectiveness. Thank you.
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Mhm. Thank you for your testimony. Any questions from committee members? Okay. Um and I believe yes, we have a just two more people signed up transitioning to S 12 68 an7019 act to facilitate access to treatment and its house companion bill age 2079 act relative to create a universal consent process to share sensitive health information between health care providers. We have Dan Olshansky from the behavioral health network incorporated Mr O'shea, Linsky Yeah. Okay. Okay, the last person signed up to testify is Kevin slickened mayor director of professional practice but. Okay. Mhm. Mhm.7078 Mr slick in their Mhm. Okay, well that concludes today's hearing for all those who signed up to testify if there are folks who did not get a chance to testify because they didn't sign up in advance or um did not want to testify orally. We do encourage you to submit written testimony that will be reviewed by the committee. I want to thank L. I. S. Fear help in hosting this hearing. I want to thank all those who have testified that this was a long and a long day and we had a lot of difficult called testimony. So thank you for sticking with us and thanks and gratitude to my fellow committee members for sticking through throughout the duration of today's hearing until we see each other again at the next hearing. Thank you all very much and have a great evening. Thank you all. Thank you. Mr. Chairman
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