Public Comment Now Open: Draft Tapering Guideline

[[Li...]]

Developed by a multidisciplinary group led by the American Society of Addiction Medicine (ASAM), the Clinical Practice Guideline on Benzodiazepine Tapering aims to assist clinicians in helping patients safely taper from their benzodiazepine medication, while minimizing withdrawal symptoms.

ASAM will open the public comment period for the guideline on June 17, 2024. The deadline to submit comments will be July 15, 2024. More information will be forthcoming.

JUNE 20, 2024 UPDATE:

The draft guideline is now open for public comment.   For more information … 

Benzodiazepine Tapering Guideline Overview:
https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

View/Download Draft Guideline:
https://downloads.asam.org/sitefinity-production-blobs/docs/default-source/guidelines/bzd-cpg-narrative-draft-for-public-comment.pdf?sfvrsn=6d96408_2

 

[[...]]

Thanks Libertas! Did find this searching for ASAM. I put the link in the edit field, and wonder if this is okay since you didn’t provide it in your post.  Please let me know! All the same, these guidelines are great  I know it’s taken many long hours from many, many ppl.  I’m so grateful for all the work that’s gone into this. Bravo!

Edited June 20 by [...]
https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

[[Li...]]

Hello @[...].  The draft guideline was not available when I wrote the first post in this thread so I could not provide a link to it.  Now that it has been released, it’s AOK to share the relevant links. I’ve added them to my first post — tip of the hat for finding them yourself!

A workgroup composed of folks from advocacy organizations, online peer support groups, and clinicians has been discussing how best to engage the benzodiazepine use/withdrawal community in providing feedback on the draft guideline.

Current thinking is that a good first step would be for community members to read the guideline with the goal of identifying the most pressing areas of concern to address in collective and/or individual responses.  For example, one concern I have is that the draft guideline is silent about the risks associated with tapering (e.g. neurological injury due to too rapid tapers, the possibility of a protracted recovery period extending well beyond the first month post-cessation). 

If you or other readers of this thread would like to participate in the priority identification process, please do so by sharing your concerns on this thread. 

[[Ca...]]

Lib if we post comments independently for the working group on that thread they will go to the FDA

i think the guidelines are very problematic and did not reflect the input of any groups except addiction medicine groups which have a vested interest in seeing people placed inpatient.

wouldn’t it be better to send comments to a point person for your work group?

[[Ca...]]

Or Lib are you suggesting we should post our comments in this BB thread? It’s confusing because the FDA site is linked right below your text but I believe you are asking for comments to be posted in this internal thread.

thanks

[[Li...]]

Hello @[Ca...].  I was suggesting we could begin by identifying, sharing, and discussing the concerns we have about the draft guideline on this thread.  The rationale is this will help us identify the most important issues to focus on when we submit individual or group comments to ASAM (see note below). 

All comments posted here will be shared with the aforementioned workgroup. 

Needless to say, you and all other members are welcome to submit comments directly to ASAM on an individual basis.

Note: The comments will not be submitted to the FDA but rather to ASAM (The American Society of Addiction Medicine).

ASAM was awarded a grant from the FDA to develop the guideline.  At this point, it is unknown what the FDA plans to do with the guideline after ASAM completes the final version.

Edited June 21 by [Li...]
Clarifications

[[Li...]]

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

i think the guidelines are very problematic and did not reflect the input of any groups except addiction medicine groups which have a vested interest in seeing people placed inpatient.

@[Ca...]

You may be onto something given that the organization that received the FDA grant is focused on addiction medicine.  It would be interesting to see the credentials and affiliations of everyone who was involved in the development of the draft guideline.  

[[Ca...]]

Understood. So we should just write our concerns on this thread and not post them individually to the agency or its subcontractor . I think that’s preferable especially since I don’t think the guidelines are in our best interests.  I just wanted people to realize that the first link took you to the document to post your comments for the agency. 

[[Ca...]]

Frankly I wouldn’t encourage anyone to submit individual comments to the ASAM. 

[[Li...]]

30 minutes ago, [[C...] said:

Frankly I wouldn’t encourage anyone to submit individual comments to the ASAM

I understand and agree that some individuals may be hesitant to submit comments using their real name.  That’s another reason why I thought some members might be more comfortable sharing and discussing their concerns about the draft guideline via this thread — one of the major advantages of BenzoBuddies compared to other platforms is anonymity.

[[Ca...]]

I agree. I don't think I want to give my name to the American SOCIETY of Addiction Medicine..I will start receiving rehab brochures and I also don't want to be red flagged at pharmacies.....

[[...]]

Per ASAM:

 

The responses will not be published anywhere. They will only be reviewed internally. You are welcome to complete the survey anonymously if you wish!

 

 

 

[[Ms...]]

On 22/06/2024 at 02:15, [[C...] said:

I agree. I don't think I want to give my name to the American SOCIETY of Addiction Medicine..I will start receiving rehab brochures and I also don't want to be red flagged at pharmacies.....

This idea is unhelpful because it suggests an unlikely scenario. ASAM does not even send out rehabilitation brochures and is not patient-focused. More patients speaking up to voice their dissatisfaction could prompt a review of their guidelines. I hope nobody is discouraged from commenting due to unfounded fears.

[[Ca...]]

The reference to rehab brochures was irony. I believe it is patient oriented or at least purportedly so. Their mission is per their website "...to define one national set of criteria for providing outcome-oriented and results-based care in addictions treatment. Today the criteria have become the most widely used and comprehensive set of guidelines for placement, continued stay and transfer/discharge of patients with addiction and co-occuring disorders."

I hope people do voice their concerns and I would prefer it if comments were submitted by one workgroup taking input from members here and elsewhere.

I reviewed the draft guidelines only preliminarily so far and did not see a reference to being able to submit anonymously. If that is an option, then great. 

[[Ms...]]

10 hours ago, [[C...] said:

I hope people do voice their concerns and I would prefer it if comments were submitted by one workgroup taking input from members here and elsewhere.

I reviewed the draft guidelines only preliminarily so far and did not see a reference to being able to submit anonymously. If that is an option, then great. 

ASAM will not care about one entry from one group. They have no way to verify this reflects patient experience as lived experience is, by nature, uncited. They may care about many entries saying the same thing. The guidelines totally ignore the stakes and make no mention of protracted harm.

[[Li...]]

In response to member questions and concerns shared on this thread as well as via Private Messages, I prepared a list of questions to ask ASAM.  Our friends at the Benzodiazepine Information Coalition generously agreed to submit them to ASAM on our behalf.  Below are the questions (in bold) followed by ASAM’s responses.

 

Will individuals be able to respond anonymously?   Yes, they can enter a dummy name and location on the survey/comment form as well as on the disclosure form.  They should use a unique name — not Anonymous or a common name like John Smith.

Does ASAM’s online survey platform collect device information (e.g. IP address, location, device type)? The platform we use (SurveyMonkey) does collect IP address, but ASAM deletes that information.

Some individuals will only be able to submit a limited number of comments at a time before they need to take a break.  How will this be handled?  The platform does not allow users to save progress to return to later. They should be sure to submit their response(s) before each break, and then start a new form when they’re ready to submit comments again. They should use the same name (or unique dummy name) for all of their responses.

Does everyone need to complete the disclosure form?  Yes. Anyone who has involvement in the content of the guideline is required to complete a disclosure form. This is to ensure the integrity of the guideline, and to be transparent about any biases that may have occurred.  Even for someone who is just responding to the public comment period, we still need their relationships disclosed as well as their employer if they are industry. Again, they can use a unique dummy name and location.

How many times will respondents have to complete the disclosure form?  Once?  Or each time they initiate a commenting session? They will only need to complete the disclosure form once. 

 

 

 

 

[[...]]

Check out our call to action about this 

 

[[Ms...]]

On 23/06/2024 at 20:30, [[C...] said:

I reviewed the draft guidelines only preliminarily so far and did not see a reference to being able to submit anonymously. If that is an option, then great. 

It's on the survey, and they also informed me directly.

You will be redirected to a Disclosure form at the end of this survey. If you are a patient who wishes to remain anonymous, please provide a unique fake name on both this survey and the disclosure form (i.e., not John Doe). Please ensure the name is the same on both forms.

[Guest [Do...]]

Hi, a video has been added to help people send their reviews.

 

 

[[Li...]]

Thank you @[Do...]. Our friends at @[...] have been hard at work. In addition to this video, they have prepared several other excellent resources to help us understand and comment on the ASAM draft tapering guideline.  To view them, visit: