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


[...]

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Posted (edited)

 

The American Society of Addiction Medicine (ASAM) has released its draft guidance on benzodiazepine deprescribing for public review until July 19, 2024.

At Benzodiazepine Information Coalition, we believe this draft falls short in both capturing the patient experience and preparing providers to offer the best care.

We need your voice to help shape this crucial guidance.

Watch our new video to learn how taking a few moments to share your experience could help improve these guidelines.

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

Some of our concerns with the draft

  1. The entire post-withdrawal protracted experience is ignored. Providers and patients need this information to understand the stakes and participate in informed consent during the deprescribing process.
  2. It is not clear enough that physical dependence on prescribed benzodiazepines is not an addiction problem.
  3. Shared decision-making requires full informed consent, including the risks and benefits of both continuing and discontinuing prescribed benzodiazepines. Most serious long-term risks of cessation are absent from the guidance.
  4. Inpatient tapers are rapid and too fast for most patients. Facilities in the United States capable of facilitating a slow inpatient taper do not exist. Abrupt cessation or overly rapid cessation leaves the patient vulnerable to years of protracted symptoms.
  5. The starting taper range of 5-25% every 2 weeks is too large and fast for many patients. It should be no more than 5-10% every 4 weeks initially and can be adjusted based on patient response.
  6. The description of tapering strategies is insufficient and assumes preexisting knowledge that most providers do not possess. It needs to address strategies such as tolerance, interdose withdrawal, kindling, and liquid micro-tapering. Patients need their prescribers to know more than just how to break a pill in half.

ASAM Draft Guidance

We came up with some ideas for comments. We will add to the list when we have time. Cited comments are the best, but a general comment is helpful, too.

Potential Comments for ASAM

 

Read our Call To Action: Let’s Tell ASAM And The FDA The Truth!

More on the history. All About BIC, ASAM And The FDA!

 

FYI:

Anyone in the world can comment on the ASAM Draft Guidance. Location doesn't matter. All comments can be confidential with a unique fake name for both the comments and the disclosure statement.

 

 

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[Li...]

Tip of the hat to @[...] for assembling these materials!

I hope members will review them and provide comments on the draft guideline by July 19.

As an older adult, I am especially concerned about the recommendation on page 5, line 21 that states:

”Clinicians should taper BZD in most older adults unless there are compelling reasons for continuation.”  

I fear many older adults will be subjected to potentially harmful tapering practices if modifications in the draft guideline are not made.  

If members have questions or need assistance with submitting comments, please post to this thread. 

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[kn...]

@[Li...] My tech devices are limited right now to a small screen I phone that does not allow me to read the print on the downloaded document. Any advice?  I could just wait for a few days until I return home and have access to our large screen Mac. I’d still be able to weigh in before the deadline. My largest and most pressing advice would center around quality of life for older adults during this whole process. (WD) I really question the need for insisting that seniors beyond a certain age (70) should be forced to taper. I had no idea of the consequences of starting this and had taken Benzos for so long with absolutely no observable ill effects. I’ve wondered so many times if it would have been better to just stay the course. I hate to think that my family’s last memories of me will be the current state that I’m in. And even worse is the whole issue of me never finishing this in good stead and living out my remaining years in a state of regret.  Sad. 😢 

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[Re...]

It is upmost important for members of our community to comment. There will be a tremendous impact of the ASAM Guidelines. 

However, if these ASAM Guidelines are established incorrectly, like they are in this draft, many many people will continue to suffer benzodiazepine injury. 

 

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[Li...]

Hello @[kn...].  Per usual, you’ve hit the proverbial nail on the head — quality of life is incredibly important to older adults, yet this draft guideline does not include even one reference to this.  You’ve also identified another area of concern — the draft guideline fails to acknowledge there are  risks associated with tapering/deprescribing and consequently there is a need for informed consent regarding these risks.

You’ve been around here long enough to know you are not the only older adult who has been harmed by less-than-stellar tapering practices.  What happened to you breaks my heart. 

Re: advice on how to proceed … in your shoes, I’d wait until I had access to a device with a larger screen to submit comments.  In the interim, I’d skim through the draft guideline on my phone and jot down the page number and a note about any ‘red flags’ I encountered.

I deeply appreciate your willingness to engage in this important work.  You have already made two major contributions and I know more will be forthcoming. 
 

 

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[Li...]

Good news!  A member of the Benzo Warriors community has reported that she followed the excellent instructions provided by @[...] and was able to enter all of the suggested comments in under 30 minutes.  

Even if you can only enter one comment, PLEASE consider doing so.  For example, the Guideline does not give adequate attention to withdrawal symptoms.  Here’s a draft of my comment to address this weakness:

 

Page 6, line 6

To ensure appropriate diagnosis, monitoring, and management, it is imperative for clinicians to recognize that BZD withdrawal symptoms can be varied, variable, and sometimes debilitating.  Clinicians also need to be able to distinguish between relapse and withdrawal. 

It is also important for clinicians to recognize that some patients may have delayed onset symptoms as well as protracted symptoms after cessation. These post-cessation symptoms may last for days or weeks but sometimes can persist for months or years (see p. 320 in The Maudsley Deprescribing Guidelines for references). 

I strongly recommended referring clinicians to pages 316 - 326 in The Maudsley Deprescribing Guidelines (Horowitz & Taylor, 2024) and including Table 3.3 “Withdrawal effects from benzodiazepines” (p. 317) in the Guideline.

 

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[Le...]

I would really recommend considering what can be done pre taper. The better a persons health is before stressing it with a trial like this the more successful and less harmed they will be. A persons overall health and what can be done to improve it should be considered.  

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[Li...]

Excellent point, @[Le...]!  I hope you will submit a comment about this to ASAM.  Let me know if you have questions or need help with the submission process. 

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[Li...]

I just finished reading Appendix I. Sample Tapering Schedules and Case Descriptions starting on Page 130, Line 1.  Here are my initial, draft comments:

  1. The importance of risk stratification based on patient history should be highlighted. In particular, clinicians need to be aware that older adults often present with multiple risk factors for severe withdrawal.  If such risk factors are present, the clinician should give strong consideration to initiating the taper at a trial rate of 5% or less. See pages 350-352 in The Maudsley Deprescribing Guidelines (Horowitz & Taylor, 2024).
  2. Informed consent re: the risks of tapering/deprescribing is not provided; patients are informed of the ‘possibility of withdrawal symptoms’ and it’s implied that the clinician will be able to keep these ‘tolerable’ (this may or may not be possible especially if the taper rate is too fast).
  3. The tapering schedules use the cut and hold method achieved via pill-splitting. No mention is made of alternative techniques to achieve ‘small enough’ doses for mini- or micro-tapers (e.g. manufacturer’s liquids, compounded liquids, shaving-and-weighing) or of alternative reduction intervals (e.g. daily, series of daily reductions followed by brief holds, alternating days, weekly, bi-weekly).  
  4. No mention is made of the importance of making proportional versus linear reductions (i.e. reductions are calculated based on the current dose not the original dose so reductions get smaller as the dose gets lower).
  5. Ms. D on page 131 and Ms. L on page 133 are both prescribed antidepressants.  Informed consent re: the risks of taking/stopping ADs is not provided. 
  6. Mr. M’s case (Page 132, line 5) involves skipping doses at the end of the taper.  Per Framer (2021):

“What is clear from our thousands of case reports: Never, ever, skip doses to taper. The drug blood level fluctuations from intermittent dosing are highly effective in engendering kindling reactions. As clinicians have long been aware that a forgotten dose can bring on withdrawal symptoms, it is unaccountable why skipping doses is at all recommended as a tapering strategy.” (p. 8 ).

Citation:

Framer A. What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications. Ther Adv Psychopharmacol. 2021 Mar 16;11:2045125321991274.

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Two Ways to Receive Help with Your ASAM Draft Comments

 

Many have asked for help participating in the American Society of Addiction Medicine's Deprescribing Draft Guidance comment period, ending on July 19.

Here are two ways to receive assistance:

1. Attend a free Zoom on July 13, 2024

 

If you need help filling out your ASAM Deprescribing Guidance, Angela Peacock, a coach in the benzo harm community, has offered her time and experience to help others fill out their forms. Watch her video above to see WHY your comments are so important. 

Angela can be reached at angela@apeacockconsulting.com with questions. 

She also is holding a Zoom to do comments together on July 13 at 12 PM EST. The link to join the free Zoom meeting is https://zoom.us/j/9913155194?pwd=NGk1VnZJSWducEdYaUExWEtwemcxUT09
 
2. Ask ASAM to help make the commenting process accessible for individuals with disabilities
 
If your ability to comment is limited by your benzo experience, or another disability, email Taleen Safarian, ASAM's Senior Manager of Science & Dissemination, at tsafarian@asam.org as soon as possible and let her know how ASAM could help you read the document and leave a commentSince all comments are due by July 19, we urge you to send this email promptly.

 

 

 

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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

 

 

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Thank you for letting us know you plan to submit a response @[Ma...]!

I hope other members will follow your lead.

As Angie says in her video, no one coming to our rescue on this … we have to help ourselves.

 

 

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@[Li...] and @[Le...]...if you haven't already, you may want to watch some of the ones on BIC's website too. I did earlier this week and it helped to affirm what I feel we are all going through, how many of us got stuck on these stupid pills (no doctor smart enough to ONLY prescribe them short term) and how we deal with the withdrawals.

https://www.benzoinfo.com/resources/#videos

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@[Le...] Guidelines like this can have a ripple effect in other countries so it’s great you are interested in learning more.  I also hope you’ll submit comments — the public comment period is open to anyone, not just people who live in the United States.

@[vo...] Yes, BIC has many excellent resources.  For example, this blog contains examples of comments you and other members can use in your responses to the draft tapering guideline:

Potential Comments for ASAM Draft Guideline
 

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15 minutes ago, [[L...] said:

@[Le...] Guidelines like this can have a ripple effect in other countries so it’s great you are interested in learning more.  I also hope you’ll submit comments — the public comment period is open to anyone, not just people who live in the United States.

@[vo...] Yes, BIC has many excellent resources.  For example, this blog contains examples of comments you and other members can use in your responses to the draft tapering guideline:

Potential Comments for ASAM Draft Guideline
 

Thank you!

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You’re welcome @[vo...].  Here’s another BIC resource you and other readers of this thread might find helpful.  In the video linked below, Nicole Lamberson (the medical director for BIC) explains the importance of patient participation in the open comment period for the draft tapering guideline.  Beginning around the 3 minute mark, Nicole provides step by step instructions on how to access the guideline and submit comments.

 

 

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1 hour ago, [[L...] said:

You’re welcome @[vo...].  Here’s another BIC resource you and other readers of this thread might find helpful.  In the video linked below, Nicole Lamberson (the medical director for BIC) explains the importance of patient participation in the open comment period for the draft tapering guideline.  Beginning around the 3 minute mark, Nicole provides step by step instructions on how to access the guideline and submit comments.

Thank you. I saw this video posted in this thread. I'll be watching the video tonight! I apologize for including sending you the documentaries. I missed seeing that you were a team member, so of course you are already well aware of those videos. Again, my apologies.

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