URGENT! We Need Your Help by July 19! Draft Benzo Deprescribing Guidelines!

[[Li...]]

No apology needed, @[vo...].  Your posts are raising awareness about the resources BIC has provided to help us respond to the draft tapering guideline!

[[...]]

Email for a disability-friendly version of the draft guidance: tsafarian@asam.org 
ASAM Draft Guidance: https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

Edited July 13 by [...]

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Yesterday’s meeting with the American Society of Addiction Medicine about their draft guidance on deprescribing benzodiazepines went well. They seemed receptive and really want public feedback, so please leave a comment—don’t think others will do it for you! So far, only 50 patients have commented.

We were given an extension for the comment deadline; it's now July 26, but only for those who email asking for accommodation. Everyone else is July 19. ASAM also said an accessible version will be ready soon. You can email tsafarian@asam.org for a disability-friendly version of the draft guidance for those with dyslexia or who use devices to read.

 

If you have trouble reading the document due to its length, we recommend focusing on the first 13 pages, which contain an overview of the recommendations.

For example, here are two potentially dangerous recommendations on page 5 that we believe are worthy of commentary from those with lived experience:

Page 5, Line 21. Clinicians should taper BZD in most older adults unless there are compelling reasons for continuation.

We disagree with this and think it will create access issues and harm for older adults. Nobody should be forced to taper against their will or to spend their golden years neurologically disabled simply because the medical field, which made the older person physically dependent in the first place, has changed its stance.

 

Page 6, Line 1. The tapering process should be designed to minimize withdrawal symptoms while balancing the risk of continued BZD use. The initial pace of the BZD taper should generally include dose reductions of 5-25% every 2 to 4 weeks and no more than 25% every 2 weeks.

The upper end of this taper rate, 25%, is too fast for most patients, and we’re concerned providers will start at the higher rate, damaging their unsuspecting patients early on as they attempt to stop benzodiazepines. Starting slow and low is a much better approach. Even more importantly, the guidance doesn't mention the stakes of deprescribing, like protracted harm, at all. It should.

And here's two worthy of praise, that we want to encourage them to keep:

Page 5, Line 9. Approaches to BZD tapering should always be considered in collaboration with the patient utilizing shared decision-making strategies.

 We agree completely with this.

Page 6, Line 5. Tapering strategies should be tailored to the individual patient and adjusted based on patient response. Patients should be monitored for the emergence of BZD withdrawal signs and symptoms with each dose reduction. If significant signs or symptoms emerge the pace of the taper should be adjusted.

After not finding much evidence for any medication or treatment being particularly helpful, the ASAM committee listened to us and incorporated that, in lieu of any magic bullets, slowing tapers and being flexible is currently the best approach to tapering.

Watch our short video in the previous post from our medical director, Nicole Lamberson, PA,  for tips on accessibility, how to comment quickly, and more! Click HERE to access the guidance and leave your own comments today!

 

 

Edited July 12 by [...]

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Updated as ASAM clarified they didn't mean everyone gets an extension. We were given an extension for the comment deadline; it's now July 26, but only for those who email asking for accommodation. Everyone else is July 19. ASAM also said an accessible version will be ready soon. You can email tsafarian@asam.org for a disability-friendly version of the draft guidance for those with dyslexia or who use devices to read.

Edited July 12 by [...]

[[Li...]]

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Video updated with the inaccurate extension removed

 

 

[[Ma...]]

I’m wondering if this has happened to anyone else.. I submitted my comments. My husband went to submit his on my computer and we put ALL the comments in and it says “you have already taken this survey” when we went to submit.  Do we need to do it on a different computer or use a VPN or go to a different address. 

[[Ma...]]

On 11/07/2024 at 10:43, [[L...] said:

PLEASE ACT NOW!

As of yesterday, ASAM had received 50 patient responses to the draft tapering guideline.  Although this is a good start, we need many more patient responses to have an impact.

This guideline will affect YOUR care in the years to come.  Watch Angie Peacock’s video below to learn why YOUR participation is so important.

If you need help writing or submitting your response, Angie is holding a free Zoom meeting on Saturday, July 13 at 12 PM EST.   You do not need to register in advance.  The link to join is:

https://zoom.us/j/9913155194?pwd=NGk1VnZJSWducEdYaUExWEtwemcxUT09

also how will we know at the end of this how many comments were submitted?

[[Li...]]

@[Ma...].  First and foremost, major hat tip to you and your husband for participating in this mission critical effort!

Yes, I know at least one other person who received the ‘you have already submitted this survey’ message when they tried to submit a second wave of comments.  I don’t know what the fix was but will endeavor to find out and report back.

In the interim, I strongly encourage you to document this issue right away by sending an email to Taleen Safarian at ASAM. Her email address is:

tsafarian@asam.org

Provide as much detail as you can in your email.  For example: Did your husband use the same username you used?  If so, what was it?  Did he use the same device/browser?  If so, what device/browser?

I hope your husband saved his comments in a word processing document so he can re-submit them once this technical issue is resolved.

Re: getting a response count …

I suspect our friends at BIC have already requested this information from ASAM and will let us know.

[[Ms...]]

2 hours ago, [[L...] said:

@[Ma...].  First and foremost, major hat tip to you and your husband for participating in this mission critical effort!

Yes, I know at least one other person who received the ‘you have already submitted this survey’ message when they tried to submit a second wave of comments.  I don’t know what the fix was but will endeavor to find out and report back.

In the interim, I strongly encourage you to document this issue right away by sending an email to Taleen Safarian at ASAM. Her email address is:

tsafarian@asam.org

Provide as much detail as you can in your email.  For example: Did your husband use the same username you used?  If so, what was it?  Did he use the same device/browser?  If so, what device/browser?

I hope your husband saved his comments in a word processing document so he can re-submit them once this technical issue is resolved.

Re: getting a response count …

I suspect our friends at BIC have already requested this information from ASAM and will let us know.

This happened to me. I emailed Taleen and she sent me a new link. It took like a day. Fortunately, I had saved my comments so I didn't have to start over.

[[Ma...]]

12 minutes ago, [[M...] said:

This happened to me. I emailed Taleen and she sent me a new link. It took like a day. Fortunately, I had saved my comments so I didn't have to start over.

Hmmm I’m wondering if I just use a different computer if it’ll work. I just don’t want to go through the work of doing ALL the comments again to get to the end and it say SORRY lol

[[...]]

 

One of our co-founders, JC, explains the first 13 pages of the document and highlights what's important to comment on.

Direct link the guidance: https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

Remember your comments are due July 19! Anyone worldwide can comment!

 

[[Ma...]]

.

Edited July 13 by [Ma...]

[[Ma...]]

3 hours ago, [[L...] said:

@[Ma...].  First and foremost, major hat tip to you and your husband for participating in this mission critical effort!

Yes, I know at least one other person who received the ‘you have already submitted this survey’ message when they tried to submit a second wave of comments.  I don’t know what the fix was but will endeavor to find out and report back.

In the interim, I strongly encourage you to document this issue right away by sending an email to Taleen Safarian at ASAM. Her email address is:

tsafarian@asam.org

Provide as much detail as you can in your email.  For example: Did your husband use the same username you used?  If so, what was it?  Did he use the same device/browser?  If so, what device/browser?

I hope your husband saved his comments in a word processing document so he can re-submit them once this technical issue is resolved.

Re: getting a response count …

I suspect our friends at BIC have already requested this information from ASAM and will let us know.

Ok so I just submitted it on my husbands computer and it went through. I plan to do the same from my parents and grandmothers, as they have watched me go through this. So itll be me, my husband, parents, grandmother, brother and good friend.

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If you're only able to leave one comment, here's an idea. 

 

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Tell ASAM to not force physically dependent older adults off benzodiazepines! 

Page 5, Line 21

Full video: https://www.youtube.com/watch?v=IYe-5lcVgg8

Comment ideas: https://www.benzoinfo.com/2024/07/01/asam-potential-comments/

Link to Guidance: https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

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A good ASAM rec that could be a little better. Leave a comment and let ASAM know what you think. Comments close July 19! Page 7, Line 4 Link to guidance: https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

[[Li...]]

To view an example of the comments submitted by one of our members plus share yours, visit:

 

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Whose clinical consensus?  Why Did ASAM Exclude Deprescribing Experts?

The ASAM document is based on clinical consensus from a group of people who are not recognized as experts in deprescribing. Why were the physicians most experienced with deprescribing and benzodiazepine harm excluded? Let them know what you think by leaving a comment here: https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

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A question we received on our Instagram today. (Follow us @BzInfoCoalition) 

Q: Would this be a law or recommendation? Lots can’t do this. Has this ASAM had this is place before?

A: The American Society of Addiction Medicine (ASAM) is operating under a 1.7 million dollar FDA grant to establish deprescribing guidelines. Most medical societies have partnered with ASAM and are likely to endorse these guidelines. 

The importance of the patient voice cannot be overstated. Without patient participation to correct ASAM's misguided track, everything is likely to worsen in the foreseeable future. However, if patients provide their feedback and it is adopted, things will improve, and more resources could be dedicated to helping those of us harmed by benzodiazepines taken as prescribed. 

ASAM did incorporate some of BIC's feedback in their first draft, so it's not hopeless, but we need more pressure from those with lived experience who have fought this battle. We recognize that providing feedback to ASAM hasn't been straightforward, but collectively, we must make the effort.

Reminder that all comments are due July 19.

Go here to comment: https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering 

Edited July 15 by [...]

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Hey ASAM! 25% reductions every 2-4 weeks is much too fast!

 

In lieu of evidence, recommend CBT!

 

The most dangerous part of the ASAM Deprescribing Draft Guidance for prescribed patients

Reminder that all comments are due July 19.

Go here to comment: https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

Quick summary:

• You can use a fake name for your comments
• You must do a disclosure (with the same name)
• A general comment can be left page 0 line 0, or specific comments (see here for specific comment ideas: https://www.benzoinfo.com/2024/07/01/asam-potential-comments/
• If you go back to comment again and get locked out, email Taleen at tsafarian@asam.org and she will send you a link to continue commenting. 

 

[[Ma...]]

Well we got 5 comments from me and my family 🙏

[[Li...]]

This is fantastic news, @[Ma...].  Tip of the hat to you and your family for speaking out!

[[Ms...]]

One of my friends commented. My mother tried to comment and got locked out. "You already took this survey" Taleen said to clear cookies and try again, or use this link: https://www.research.net/r/FN6WX9B

Hopefully they get enough comments to realize they made some glaring oversights. 

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ASAM Benzodiazepine Deprescribing Guidance is nothing like The Maudsley Deprescribing Guidelines

Tell ASAM to be more like Maudsley! https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

Maudsley Deprescribing Guidelines from Amazon here: https://a.co/d/8mqbe9z