BIC reaches out for input

Hi BB,

Received an email from Benzodiazepine Information Coalition asking to contact a representative who will be speaking (locally for me) about the benzo crisis. BIC is concerned this meeting may serve to distort this problem further. They asked for support in contacting the guest speaker directly to share any important talking points. Below is the email I sent to Wendy Ullman (Rep). She will be tackling this issue Wed. October 16th. In Doylestown, Pennsylvania.

My email is not long or eloquent but I’m hoping it drives some important points home. I welcome your feedback. Thank you for listening.!

Dear Ms. Ullman,

Before any more stigma surrounds these medications let me say they do work for serious anxiety sufferers like myself. Taking first Xanax then Clonzapam totaling over 10 years until a psychiatrist fearing for his license stopped my prescription abruptly and a long line of fear filled Dr.s in the following horror, withdrawal filled months after. All Refusing to reinstate my prescription for a safe withdrawal. I cannot write this without rage over what went on and what was endured since a scared, irresponsible Dr. decided to not renew my prescription with absolutely no discussion with me. I took them as prescribed, the drug acts on the gaba receptors altering the brain’s response to fearful or stressful situations. The drug works very well BUT not without other problems resulting. Now being off benzodiazepines for a year now I’m home bound most of the time. Unable to drive far or function safely.

What is most needed is the hysteria to diminish and the prescribing practices to be explored in a calm and rational manner. Stop yanking people off of them abruptly, empower Dr.s to be able to participate in the patients safe withdrawal. Educate the medical community on the facts that these drugs DO NOT safely leave the body in a few days but create a long excruciating, life changing experience in many.

Please talk to the voters about their very own experiences because the current information people are operating on is filled with stigma, misinformation and deadly lies if I may be so bold to say.

Thank you for listening to an injured , unheard benzodiazepine patient.

Regards,

Susan

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Hi BB,

Received an email from Benzodiazepine Information Coalition asking to contact a representative who will be speaking (locally for me) about the benzo crisis. BIC is concerned this meeting may serve to distort this problem further. They asked for support in contacting the guest speaker directly to share any important talking points. Below is the email I sent to Wendy Ullman (Rep). She will be tackling this issue Wed. October 16th. In Doylestown, Pennsylvania.

My email is not long or eloquent but I’m hoping it drives some important points home. I welcome your feedback. Thank you for listening.!

 

 

Dear Ms. Ullman,

Before any more stigma surrounds these medications let me say they do work for serious anxiety sufferers like myself. Taking first Xanax then Clonzapam totaling over 10 years until a psychiatrist fearing for his license stopped my prescription abruptly and a long line of fear filled Dr.s in the following horror, withdrawal filled months after. All Refusing to reinstate my prescription for a safe withdrawal. I cannot write this without rage over what went on and what was endured since a scared, irresponsible Dr. decided to not renew my prescription with absolutely no discussion with me. I took them as prescribed, the drug acts on the gaba receptors altering the brain’s response to fearful or stressful situations. The drug works very well BUT not without other problems resulting. Now being off benzodiazepines for a year now I’m home bound most of the time. Unable to drive far or function safely.

What is most needed is the hysteria to diminish and the prescribing practices to be explored in a calm and rational manner. Stop yanking people off of them abruptly, empower Dr.s to be able to participate in the patients safe withdrawal. Educate the medical community on the facts that these drugs DO NOT safely leave the body in a few days but create a long excruciating, life changing experience in many.

Please talk to the voters about their very own experiences because the current information people are operating on is filled with stigma, misinformation and deadly lies if I may be so bold to say.

Thank you for listening to an injured , unheard benzodiazepine patient.

Regards,

Susan

 

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i think it's concise. you covered a lot in a short space. what's the confusion/distortion of the problem BIC is concerned about?

Email from BIC inserted :

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Time Sensitive:

Your Voice is Needed before Wednesday, October 16th!!

Anyone can participate. Email or call Pennsylvania State Rep. Wendy Ullman's office and provide at least one critical talking point (listed below) about the prescribed benzodiazepine problem.

E-mail: RepUllman@pahouse.net

Call: 267-768-3670

On Wednesday, October 16, from 7-9 pm, at Doylestown Hospital, Pennsylvania State Rep. Wendy Ullman and PRO-ACT community organizer Elnora West will host a panel discussion, “Benzodiazepines: Our Other Prescription Drug Epidemic."

Ullman will be joined by a panel to include:

Amanda Johns, director of pharmacology at Aldie Counseling Center

Dr. Maryann Venezia, a psychiatrist at Lenape Valley Foundation

Christopher White, clinical supervisor at Bucks County Drug & Alcohol Commission

Joseph Yi, detox specialist and board-certified addiction psychiatrist

Dr. Paul Zazow, a psychiatrist.

A recent article in "The Intelligencer" about the panel discussion quotes Ullman as saying, "It’s becoming clear that adult Americans have an addiction to prescription medications, not just opiates. I’m looking forward to an illuminating discussion about ways to end the benzodiazepine crisis in Pennsylvania.”

Major Public Health Concern

While we hope to be pleasantly surprised, the above quote containing addiction terminology erroneously used to describe what is actually the majority of the time a prescribed, iatrogenic (caused by medical care) problem is a red flag. Historically, lawmakers, medical providers (including psychiatrists and addiction medicine specialists), rehab and "detox" personnel, and the like have misunderstood and misrepresented the prescribed benzodiazepine problem. Without the affected-prescribed-patient firsthand experience and voice, we fear that Rep. Ullman and her panel could ultimately do more harm than good. If prescribed benzodiazepine physical dependence is allowed to be misrepresented as "addiction" and blamed on patients "misusing" or "abusing" benzodiazepines, as opposed to examining the true nature of the abuse of benzodiazepines that is occurring — overprescription, lack of informed consent, long-term prescription beyond recommended short-term (2-4 weeks or less) guidelines, the gross lack of medical education on proper deprescribing protocols, and negligent, over-rapid withdrawal practices — many Pennsylvania patients could be gravely harmed. This is a major public health concern for all Pennsylvania residents.

How to Help?

If Possible, You May Attend This Panel Discussion In Person!!

Aside from actually attending, there are two ways anyone (including PA and non-PA residents) can get involved:

(1) E-mail PA State Rep. Wendy Ullman: RepUllman@pahouse.net

(2) Call PA State Rep. Wendy Ullman's Office: 267-768-3670

Some Talking Points When You Make Contact:

Ask that Rep. Wendy Ullman consider adding the prescribed-harm patient experience/voice to her discussion panel.

Addiction/abuse and prescribed physical dependence are NOT synonymous — they are distinct phenomena. The differences are clearly defined in this FDA document.

Patients taking their benzodiazepines exactly as prescribed should NOT be subjected to typical addiction treatment (e.g. 12 steps and abstinence). These are inappropriate models and will cause harm, especially if already-physically-dependent patients are forced to cold-turkey or rapidly withdraw against their will (this is medically negligent and dangerous). The patient, NOT the doctor, should be in charge of the rate & speed of withdrawal.

Email or mention The Ashton Manual as expert guidance on prescribing and withdrawal. Other existing guidelines, including PA benzodiazepine prescribing guidelines, can be found here by scrolling down to the "Guidelines" section (bottom right).

If Rep. Wendy Ullman and others desire to make forward progress around the benzodiazepine issue, the following should be considered for implementation in PA:

require mandatory informed consent about the risks/dangers (prescribed physical dependence, withdrawal, addiction, protracted injury, severe adverse effects, etc.) of benzodiazepines to be provided by the prescriber and/or pharmacist and signed by patients at the time of prescription

produce PA state regulations that must be adhered to around prescribing & withdrawal which state that benzodiazepine prescriptions should be limited to short term (2-4 weeks or less) for most prescriptions. These guidelines should include a medical exception clause for the minority of patients who require benzodiazepines long-term (hospice, extreme cases, those patients already physically dependent who should not be forced to withdraw against their will).

call for mandatory medical education around the proper prescribing and deprescribing of benzodiazepines

guidelines that make clear that those patients who are already physically dependent via legitimate prescription should NOT be forced to taper or cold-turkey against their will.

CLICK HERE to E-mail PA State Rep. Wendy Ullman

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I sent her 4 links to keep her busy reading. I didn't like the "addiction" terminology. These people have to learn that most of us are NOT addicts. We have to change along with them. I still read about people on BB using the words "addiction" or "clean." Only the people who consider themselves true addicts ought to use those words.

Hi Terry,

Agree 100% about the addict stigma. When I was going through withdrawal hell that was how some treated me. Drug seeking behavior yada, yada. All I needed was to stabilize which never really happened since I was treated badly by the medical community as a whole. Spent 3 weeks in a psych hospital I went in to get help with withdrawal they turned around and put me in as involuntarily committed after they locked me in a room for 6 hours with paper clothes on, yes those disposable hospital clothes cuz they took mine from me. The whole thing was sick, twisted, malicious and misunderstood. Reminds me I should go back there to set the record straight. So much stigma.

Geez, I'm so, so sorry you had to go through that, V!!! When will they ever learn that we are in a separate category entirely???

But I must admit that I used the term "addiction" loosely for years. It wasn't until I read here on BB that that is an improper word to use.

It sounds like you were treated very badly when you were just trying to get help. So very sad...

At least you've found the right place to land at BB!!!

So glad I found BB Terry! I’d still be fumbling around in a dark place, BB has been a flashlight in a long dark hallway,  lol. Love you guys, and love that this forum exsists!

Vic